May 22, 2003
Dear Denise,
Thank you for such kind thoughts and words of encouragement. I know how busy
everything gets so I appreciate that you made the time to read thru all this
stuff. It makes me feel like I am actually helping someone, instead of just
sifting through my own baggage. Thank you again.
Take care,tammy
May 07, 2003
Reflections
This story is a compilation of my somewhat dusky memories and the numerous
repetitions my dad gave the tale. A story told over the many years while I was
growing up and over the years after I left home.
I think I was about 4 years old when I saw and fell in love with a bright shiny
new red orange bicycle. It had training wheels and tassel streamers on the
handlebars at the Western Auto for about $35. There was still snow on the
ground so I guess it was still winter or at least early spring. My Dad had
offered to buy it for me as an early birthday present. Dad had said I had
stubbornly refused, saying that I wanted to do it myself. My mother said that I
had this “damned independence streak” even then.
I had this little metal globe bank that I carefully saved all of my monies in.
I don’t really know how long it took but I know it took quite some time for me
to accumulate $35 in pennies, nickels and dimes, in the late 1960’s. The big
day came when I had amassed my small fortune, my sisters helped me count, wrap,
and roll all of it, in hopes of taking it to the bank to change into paper
money to make my purchase at the Western Auto for my dream cycle.
The Saturday morning had finally come. My dad had taken off early from work to
take me to the store. My father said not to worry about changing the money over
to bills because it would mean more to the guys, that he knew, at the store if
they knew I had worked and saved for the bicycle.
I remember wearing my shoulder length hair in pig tails with black velvet
ribbons, a dress my father had picked out and gotten for me for my birthday the
year before a well worn favorite brown, black and gray plaid dress, the little
bobby socks with the lace around the edges the ones that mom liked, with my
favorite shoes. My high top Converse all star (boy’s sneakers). (Although I
didn’t know that wearing boy’s sneakers was a fashion faux pass at the time.)
I put all of my money in this washed out metal peanut butter pail with a lid.
My dad carried the heavy pail out and put it on the passenger side floorboard
for me. I had felt like a very big girl. I had felt very special because I was
able to ride to town with Dad, all by myself and sit up in the front seat. My
two brothers and sisters were all out playing at home. So off we went to the
store.
Of course, back then, things were different and they used to let me stand in
the seat next to Dad, so I could see out the car’s windshield. But, we had to
mind our manners with Dad. I climbed up next to him as carefully I as I could
without stepping or stomping on him. I stood so that I could see without
bothering him, too much. I learned to sit-slide down in the seat before he
stopped or when he was in traffic. Dad’s right arm or mom’s left arm would
automatically swoop out to stop us from being propelled forward into the dash
or “out the windshield” as they had always warned us.
When we got to the store, my dad had said we would leave my money pail in the
car until he made sure they still had my bicycle. Although, I think he had
intended to pay for it with his money. I thought my Dad was busy talking to
someone and so I didn’t want to interrupt the adults. Interrupting the adults
was a crime of great magnitude, while I was growing up.
However, I was always under my father’s watchful eye. He saw me going towards
the store’s door and asked me what I was doing. He said that I told him that I
didn’t want to bother him because he was busy talking so I was going to get my
money pail. He asked if I wanted help and that I had told him no. He said I had
that “determined look” about me.
My dad said he watched as jumped up and climbed into the car window (because
the car doors were too big and heavy for me to open) then took my money pail
and dropped it out of the car window, and out onto the sidewalk. (Without
breaking the pail.) His car had been parked just outside the store window. He
said I was panting and grunting, struggling with its weight. Dad watched as I
dragged it further into the store and up to the counter to the new store clerk.
The new store clerk that day was Mr. Boshart’s Aunt Velma and she was filling
in for Mr. Boshart because he was sick.
At first I had thought she was kind of scary or intimidating. Miss Aunt Velma
was a tall lady, (taller than my dad) with strong straight, chiseled more
handsome features than feminine. She wore the red lipstick popular at that
time, had arched black eyebrows above bright green eyes, (the color of
tarnished brass) and had her blue-black hair in a loose bun. She wore a dark
gray dress with a black sweater with a (brooch) pin with some sort of posies on
it. She wore dark hose with black shoes. They were men’s shoes.
She smiled at me. She wasn’t scary anymore. She had a dazzling smile that
reached every inch of her face and made her eyes sparkle. She had the brightest
and straightest teeth I had ever seen. My father said that he reminded me that
it was rude to stare and that I told him I couldn’t help it because when she
smiled, she looked like a movie star. I gushed, that she was so pretty!
Her smile dimmed and she eyed me studying me for a moment and said quietly she
wasn’t used to hearing that sort of thing, especially from children. Dad said
that I was like him; I said what I meant and meant what I said.
She seemed pleased with the explanation my father had given her. “Aunt Velma”
patiently counted out the money from my pail and spoke to my dad. They allowed
me permission to ride my new bicycle through the store and out of the front
door to my father’s car, Life was grand, all was right with the world.
May 01, 2003
i have this thing about hospitals, after sitting for several days with my
brother and father-in-law before they passed away. i get wound up, nervous, and
anxious just talking or thinking about it.
my mom was very sick with a flu virus (severe diarhea and vomitting) and she
lives in a long term care facillity (or nursing home as they used to be
called.) i spent the night with her on sunday. I stayed up. I sat with her,
held the basin for her, ect. (i don't want to be too graphic.) i didn't go home
until i couldn't go any more on monday night.
my sense of smell is over halfway gone,unfortunately, it came in handy the
other night.
mom is getting better slowly. she is 72 and has had a few strokes. a really big
one that put her in a coma for 3 and half months,left her right side paralysed,
and a few "mini" strokes that created more havoc on her tiny body. she is tough.
i watched other residents as they passed me here and there,and they watched me.
for me, at 38 and no longer able to live alone, the nursing home was a scarey
place to be. a place to be when i become too much to take care of medically at
home. in my reality it is a fear to be faced. it sucks but there it is.
here my mom is sick, and mom would tell the nurses that i had advanced pd. she
told them i was tough.
April 27, 2003
A poem for Johnny (my viking biker)
Wants
I may be rusted
I may be flat busted
Weathered, and old
But...
I want to live,
a life with no regrets
a life with happiness
a life with small comforts
I want a life
without meds,
without pain,
without Doctors.
I want peace
I need peace
I need you
I love you
More than anything else I want.
April 14, 2003
Well hello, I haven't fallen off the face of the Earth, as some must have
believed. lol
I get a little lost sometimes and don't know quite where to start. I just seem
to stay lost for a while, hidden, yet in plain sight. I still have some
excellent days of on-time, they are fewer, and far between. I suppose that's
why I am so grateful for whatever time I do get to have. I've been progressing.
Sometimes, I'd rather have people think I was being lazy, than having a bad
day. To me, lazy seems to imply a temporary state of being. I'm not in denial,
it just seems a little more hopeful for me, to be lazy. Sometimes I just get
busy, over do and then the bottom falls out. I crash. I get back up and do it
all again. acccck
take care,
I'll try to sort some more out later. Here's some pics to look at if you'd like.
toadie's web albums
http://community.webshots.com/user/toadies_pwp_page
February 21, 2003
I really shouldn't try to write a journal entry while I'm so sleepy that my
head bobs so bad that I'm pecking at the keyboard with my nose to type. lol
I've noticed that when I write or type, I'm prone to leaving letters out. Like
cook book would become cok bok, or would - wold, it seems that double letters
re more difficult to spot for me. I'm not sure if it's because I often skim
stuff. Initially I glance it over, to sit down later so that I can seriously
read or study something as the case may be.
The problem with being tremor dominate is that everything will tremor, my
toungue, ears, eye muscles, face ect. There are times when the muscles around
my eyes jitter, it's hard to pay attention and read something so sometimes,
someone else has to read for me.
The problem with progressing from one stage to the next is becoming more rigid.
The stiffness and pain are even harder to hide from. I think I would rather
have my tremors than this feeling that rigamortis is setting in on me.
Yes my meds have been adjusted, the continous sinemet saga. The problem with
the sinemet "shortage" has bitten me in the ass. I can only get generic.
Yes, yes, I know, there [i]isn't[/i] supposed to be that much difference
between the brand name sinemet and generics. But, I'm not typical a pwp. either
February 14, 2003
I'm having a hard time right now. My right side is showing more signs of
progression. My right arm and leg become heavy, stiff, leaden. The top of my
right foot catches on stairs and such, I'm not sure where my legs and feet
always are. I'm not sure how I got here so fast.but I do wonder at the speed
that pd seems to have built up. Just hopesometimess 60 work everaydy, and now I
struggle. No I'm not compltetely surrendering or giving in.
i'm leaving off more lettrs, I also stutter type.lol especially when i type
with my nose as itis
February 12, 2003
Well, I guess it’s time to write about the real me, stuff that’s been going on
with me. If you know me, I talk a lot about nothing until I’ve sifted through
stuff enough that I’m ready to really talk.
I’ve gained a lot of weight. I say it’s a lot for me; it’s about 25-30 pounds.
But, in retrospect I seem to do a winter hibernation gain every year. Kind of
like the bears do, gaining enough body fat to live off from during their winter
nap, waking up in the spring thin and hungry. I just don’t do the winter nap
but I do wake up hungry. Lol
I have a harder time every year trying to loose the weight. Usually I refuse to
buy a larger size in pants and starve myself down to my regular size jeans.
This year I bought 2 pairs of jeans, they are the only pants left to fit me
outside of my sweats. Accck
I tend to over analyze stuff in general. Trying to figure out why I act the way
I do or feel like I do, sometimes. From the time I was 17 years old, until I
was about 30, I was very concerned with my weight. My weight was somewhere
between 100-110 pounds for about 10 years. I worried about getting fat so much
that I couldn‘t keep a scale in the house.
Hindsight is said to be 20-20, I can see patterns of basically starving myself
to be thin. Living off caffeine and nicotine for days on end. I started to
wonder why and where this unhealthy obsession and fear of getting “fat” came
from.
It took me many years to figure out that my hang up with my weight went back to
a forgotten incident when I was a senior in high school. I had spent most of my
Christmas vacation gorging on holiday goodies. Mom would make 5-pound cake pans
of homemade fudge, a deep rich chocolate, chocolate with raisins, peanut butter
and a brown sugar fudge called penuche. My mom and my sister pulled me aside
and told me that I was getting fat. They expressed their concern and told me
that it was for my own good. But, somehow it got lost in translation.
I remember feeling like they were ganging up on me. My 17-year-old head had a
brain full of a being 17. I just felt that they were being mean to me. I got
some kind of flu virus and developed bronchitis, a week later. I missed 2 weeks
of school. Over that horrible 2-week period of coughing, vomiting and diarrhea,
I also lost 20 pounds. Viola, the birth of an eating disorder.
I’m not sure that I forgot about it or just chose not to remember it. But, at
30, I had finally come to terms with it, become comfortable with my body and
myself. Johnny is very supportive. He thinks I‘m pretty and makes me feel
pretty. He tells me that my weight is fine, just as long as I don’t out grow
his clothes. Lol
Now, with that entire story aside, you are wondering what all this has to do
with Pd, right?
Well, when my weight goes up to much, my meds fluctuate even more. I find
myself with more problems being stiff (like a stuffed taxidermy project),
akinetic; dystonia (feeling like I have marbles in my butt muscles or like I’m
sitting on golf balls) and my balance problems are increasing. A simple nudge
or bump can send me reeling or make me fall over.
Ode to a regular life, I’ve never been a “regular or normal” person before so I
really am not all that sure I’m missing much.
My diet is so limited because of protein interferences, chicken, turkey, fish,
even pasta dishes (that are very high in carbs) cause my meds to stop working
or make the meds actions barely perceptible. I lack or don’t produce enough of
certain stomach enzymes cause most fruit to go right through me in twenty
minutes and a fatty food intolerance make pork, greasy, spicy foods a no-no.
But, I have can eat beef and found a love for junk food.
I’m also trying to quit smoking. I’m using the patches and they seem to be
working well, when I remember to put them on. I have a keen craving for
chocolate. Instead of smoking I absently have eaten a ½ pound bag of M&Ms,
Raisanett’s or a bag of chocolate chips, chunks to be exact.
So now I will have to stop and think before I eat stuff. I also have to think
before I speak and it’s another a new concept for me. I’m just going to have to
exercise (accck) and try to eat right. I’ll let you know how it’s going or not
going, if the case may be.
February 11, 2003
I feel better after that little tantrum.lol
February 11, 2003
Christopher was late for school yesterday, so I had to write an excuse for him.
It took 11 sheets of paper before I could get a note written large enough to be
read.
By the time I got done, I was ready to tell them at school that it's none of
their business why he's late, he made it to school.
Why do I have to write these stupid notes that end up in a round file (trash
can) that no one reads, anyway?
acccck
February 10, 2003
Saturday, we went to a big Motorcycle swap meet in Syracuse. It was loud and
crowded, and bumper-to-bumper people. I found quite corners to stand in and
watch people pass when I could. A sea of black leather, Harley t-shirts,
baseball caps, do-rags, boots, and tattoos. Most of the folks were very polite
and didn't seem to mind my profoundly noticeable tremor. Occasionally as I was
navigating through the throngs of people, I would bump into someone and
apologize.
One such victim was a very large man that had stopped quickly to visit with his
friends. I wasn't fully paying attention, stepped on the back of his boots, and
ran into his back. He was heavily tattooed, muscled and about 3 inches, or so,
taller than my son Christopher (who stands 6'-6" in boots). As I looked up, the
man’s face was transformed from the common but well-practiced look of
disinterest to a shocked, startled that anyone would dare such a thing. I
didn't understand that look until much later. But I understood the glaring
scowl of this mountain of a man, I smiled as brightly as I could and apologized.
His dour nature seemed to ease as he realized that I only came up to a little
above his elbow. He smiled an acceptance of my apology. He turned and stepped
to the side so that I could pass by, giving me the full view of the colors on
the back of his leather jacket. He was a Hell's Angel.
I found and fell in love with a black 1947 Harley Davidson trike with a thick
black leather seat in the back that reminded me of old horse carriage buggy
seats. A kick-starter. I wouldn't be able to keep her up and running because of
parts being expensive, having to have parts hand made (machined) due to being
obsolete or unavailable.
We had a lot of fun. I found that there is one place left that I don’t feel as
self-conscious about my appearance. (You know, masking, drooling, stuff like
that) I can still have a simple, genuine smile and make a badass biker stop
grimacing and smile.
February 06, 2003
I thought that it would only be fair to mention that there are a few bikers,
who act just as badly and have attitudes like you would not believe.
February 06, 2003
Well,it's been a while. I've been keeping pretty busy, there just doesn't seem
to be time enough in the day to do all the things I need to and want to, even
if I don't sleep at night.
At any rate, I've been working on some arts and crafts. I'm not painting and
making stuff to sell, just family gifts. If you've ever seen a tremor dominant
parky with a hot glue gun, then you can appreciate all this stuff.
My daughter picks on me, picture me wearing a Harley tee-shirt, logger boots,
Harley belt, with these plastic carry boxes full of fleece, hot glue sticks,
glue gun, satins, laces, ribbons, bows, and tiny roses. Grumbling bad words
when I burn my fingers with some posey or another glued to the back of my hand,
forehead or some such.
It's not that I think I'm a gifted artist, it relaxes me, it makes me feel
better. Beauty is in the eye of the beholder. I like loud bikes over the tinkle
of fine chrystal, yet I can no longer tolerate the mall's crowds or throngs of
people rushing at me, it overwhelms me.
I suppose it's because bikers seem to be a more accepting of disabilities as
group, than most. Some people have talked down to me because I ride a
motorcycle. I had a lady in the grocery store call her child and hiss at the
child, that she should stay away from me. Only this time it's because I'm
carrying my helmet, or wearing my leathers and not because of pd tremors.
If you've ever seen some one in a car or truck talking on a cell phone,
(instead of driving). I've seen them run a light, stop sign or perform to
numerous to count stupid acts. (these are the drivers who aggravate everyone on
their way to someplace)
These are the same kind of people who say they could or see my 275 pound
husband on his 630 pound Harley. They cutout in front of us, try to broadside
us, ride on our butts, pass in an unsafe manner, and in general fail to realize
we have a claim to the road, just as any other vehicle. This is a reason people
wear leather on bikes.
Generally they are quick to judge me and don't even think about that I was just
a band mom with a conversion van a few years ago. I'm not angry I'm just
puzzled at such.
Well I reckon I should close this for now, I'm not real sure where I going with
all this blather. lol
January 18, 2003
It is cold,cold,cold! We've been getting hammered by an arctic cold wave and
lake effect snow storms. Whiteouts(the absence of visibility due to blowing or
drifting snow, sometimes it's because it snows horizontally), closed schools,
closed roads, stores closing early to let their employees get home.
The snow is about hip deep in places, drifts higher in others. It's been at
least -20 degrees F. all week. It is -30 degrees outside right now. When it
gets that cold its hard to heat the house. It's hard to get a fire started and
keep it going in the wood stove. Below zero temperatures make your skin dry
out, make your hair dry out, but if you go out with wet hair it will freeze.
Meds seem to be hit and miss. But, at least they are still working to some
degree. It's better than a sharp stick in the eye, anyway.
well i'm finally getting sleepy, acck the kids are on the couch and loveseat,
guess i'll get the chair,lol
January 02, 2003
Well, it’s been a while. The time away from cyber world has been healing and
I’ve had some time to sort some things out.
The cold and snow here have caused me to cease or at least severely limit, most
of my outside activities because if I get too cold, I get stiff as a mannequin
or my tremors kick in and it takes a long while for them to calm down enough
for me to be able to do anything. Hell, you could put me in a tub and throw in
a load of clothes to be washed and spun dry. Hehehe
At any rate, we drove to Alabama for a week long visit with my mother-in-law
for the holidays. The bright, sunny 50-70 degree weather down there was a
stark contrast to the sleet, snow, ice of below 0-30 degree weather we’ve been
having here. The holidays were really pleasant, a kind and gentle place to be
with a strong sense of family. We all missed my father-in-law but found comfort
in sharing funny or fond stories of him. Johnny and I had a wonderful time and
spent a lot of time together.
Both of the kids have their cars on the road now. Jennifer has skidded into two
snow banks and buried her car. I had to pull her out of one bank after Chris
and I dug her out. She said she had only been going about 10 miles an hour.
(not a likely explanation, for the car was buried in hip deep snow from the
front bumper to the mid-passenger door and I know how she drives anyway, lol)
Christopher got his driver’s license last month. He found an older model car
that has room for his 6‘-5” 275 pound frame. He has to push the seat all the
way back and recline the back. He can still close the car door. He has trouble
with cars not having enough room for his legs. There’s not enough room between
the door and steering wheel, causing him to get stuck inside the vehicle or the
car doors won’t close. He loves driving anywhere and everywhere.
I'll have to write some more later. I get tired easy, I'm fighting with a nasty
cold. You know, the usual coughing fits and lovely stuff like that.
November 10, 2002
Life with Pd and the weather here are full of contradictions.
The weather here yesterday was absolutely gorgeous. It got up past 40 degrees
and the sun came out to grace us with it's warmth and light. I had an
excellent "ON" day. I pulled my bike out of the arn and got her up and running,
had a very nice ride over to my brother's old house to visit. I had to ask my
sister-in-law to braid my hair for me, I told her it's funny how I couldn't
braid my own hair sometimes,(exceopt to tie it in knots) but could ride my
bike. Stayed a while, took my next dose of meds, great day no lapse or down
time between doses.
I spent a few days down in the woods, cleaning out my Dad's old hunting camp.
Critters, racoons mostly, had gotten in and destroyed or scattered virtually
everything. It felt good to get it taken care of. As I cleaned up the mess. I
felt a peacefulness from being outside and enjoyed the nature all around me.
I watched about 30 turkeys of various sizes grazing, picking, pecking and such
for quite some time. I listened to the large birds crash and bang through the
congested tree branches, flapping their wings and sounding like an old John
Deere tractor. They really are quite noisy when they think they are unobserved.
Yet they hide on tiny tree limbs and think no one can see them. lol
I had to laugh at one turkey that flew up and landed on a tree branch about the
size of your index finger. The great bird teetered back and forth trying to
find his balance. It was then that the branch broke and the turkey flapped in
mid-air and hovered over space for a few seconds, like in a cartoon. Then he
decided to attempt another landing on a bigger branch. (one that might support
his heft)
November 10, 2002
Life with Pd and the weather here are full of contradictions.
The weather here yesterday was absolutely gorgeous. It got up past 40 degrees
and the sun came out to grace us with it's warmth and light. I had an
excellent "ON" day. I pulled my bike out of the arn and got her up and running,
had a very nice ride over to my brother's old house to visit. I had to ask my
sister-in-law to braid my hair for me, I told her it's funny how I couldn't
braid my own hair sometimes,(exceopt to tie it in knots) but could ride my
bike. Stayed a while, took my next dose of meds, great day no lapse or down
time between doses.
I spent a few days down in the woods, cleaning out my Dad's old hunting camp.
Critters, racoons mostly, had gotten in and destroyed or scattered virtually
everything. I felt a peacefulness down there.
I watched about 30 turkeys of various sizes grazing, picking, pecking and such
for quite some time. I listened to the large birds crash and bang through the
congested tree branches, flapping their wings and sounding like an old John
Deere tractor. They really are quite noisy when they think they are unobserved.
Yet they hide on tiny tree limbs and think no one can see them. lol
I had to laugh at one turkey that flew up and landed on a tree branch about the
size of your index finger. The great bird teetered back and forth trying to
find his balance. It was then that the branch broke and the turkey flapped in
mid-air and hovered over space for a few seconds, like in a cartoon. Then he
decided to attempt another landing on a bigger branch. (one that might support
his heft)
November 07, 2002
Well, it’s been a week since my meltdown. You know, for some reason I can’t
stay away too long. I don’t know why it is though. Lol
A long time ago, I thought that when you went to the Doctor’s, you would find,
get or be relieved of whatever ailed you. Maybe it wasn’t right off, but
eventually within a few weeks. I always hated taking pills or medicine, unless,
I absolutely had to. I had no idea that there was a trial and error with
medicines or combinations of medicines. I never actually believed all of what a
Doctor said as Gospel.
It seems like a lifetime ago. I didn’t have to take anything. I had a choice as
to putting up with whatever, or taking medicine. My first neurologist had a
theory of “the patient failing the treatment“ placing the blame on the patient
for meds not working as they should. I’ve learned that the treatment can fail
the patient, because you can do everything you are supposed to do and the meds
don‘t work for you.
Twelve years of being a part of a medical system have taught me a great deal.
I’m still learning something new all the time. I suppose that’s why they call
it a Medical Practice, because it hasn’t been perfected yet. lol
I’ve been feeling a lot better for the last few days. My Doctor’s appointment
went okay. I still have pd. Doesn’t that suck?
At any rate, He doubled my effexor, which seems to be working quite well. I
noticed quite a difference within a few days. I also started taking some stuff
I call a “magical sleeping potion“, it’s called sonata, it actually works. I
sleep a deep restful sleep and wake up feeling refreshed. I was up for a couple
of days before I remembered I had the stuff. (I hear you, “Give that girl a
DUH! card.” lol) But, I’ve slept every night, all night, for the last four
days. I’m not groggy or hung over in the morning. I just feel like
aaaaaaaaaahhh. I can’t remember the last time I slept all night, much less for
multiple days. Maybe that’s why I didn’t realize what a big difference sleeping
can make.
If you know me very well, you know that I tend to talk a lot about nothing
before I get to the real heart of something.
Johnny and I have had some really long talks. It has been very difficult for
him. It’s been hard for me but I’ve had to lay a lot of stuff on the table,
stuff that I don’t like to talk or think about. It feels like I’m peeling back
a layer of skin, but it’s been a necessary evil for me. I know that something
is there or happens whether I say it out loud or not, but somehow, it seems
have more power when I give it a voice. But, I’ve had to say all the things
out loud that I have been aware of, known or felt about my progression with
pd.
It’s been a tough week for acceptances. I’m in the advanced stages of pd. I
can’t drive very far by myself, anymore. The farthest I can go alone, is to my
brother’s house about 17 miles away and the local grocery stores, about ten
miles away. After that, I have to take someone with me. I have to carry the
cell phone everywhere, even at home when I go out to the barn to work on some
piddle projects, I have going on.
I’ve had to turn over the checkbook and the bills to Johnny. The same reasons
that I am unemployable are the same reasons that I can no longer handle the
finances. I am unreliable, undependable and irresponsible. I have noticed that
I no longer have a grasp on time, money or consequences. As in the consequences
don’t mean the same to me, they are real and present, but I might do something
impulsive or stupid despite the consequences.
For instance, it’s not that I buy extravagant things like expensive jewelry or
clothes for myself, I’m still cheap. I spend a little two or three times a
week, on gadgets or stuff for the house or for the kids if they want something.
I have a hard time not spending money on someone else. But, it all adds up and
in reality, I’m pissing money away that we don’t really have. Unfortunately, it
leaves Johnny feeling like he’s working his ass off and has nothing to show for
it. Despite all the warnings and resultant problems, I can’t seem to find a
compromise or balance for my impulsive spending ways, so I just stay out of the
stores, and out of the money.
I’m not going into everything and I haven’t said all this, as a list of
complaints or as an “Oh woe is me fest“. It’s what I’ve had to do to make
Johnny open his eyes really wide so that he can see me as I am now, and not as
I used to be. Although it’s probably partially my own fault, because I am very
adept at acting like I’m feeling much better than I really am. Bless his heart,
that is where he is having so much trouble. As Carl said, there’s no point in
comparing myself now to what I was like before. The bottom line is that we have
to deal with the here and now me.
By no means do I see all this as a surrender to pd, I’m not the type to simply
lie down and take whatever. I never have been submissive or a doormat, I may
not be the force to be reckoned with, that I once was. I’m still filling every
minute of everyday with living out loud and doing things despite pd. I still
have my spirit of peace, freedom and independence along with my fierce
loyalty. I hug my ugly little beastie called pd and still manage to flip him
off occasionally.
October 29, 2002
There are times when I feel like that this journal thing has outlived it's
purpose. Perhaps people really read all this and wonder if I will ever shut
up,lol
as in "My God woman! You can only talk about your life and life with pd so
much!"
I really hope this veiw into my home, family and life will be of help to
someone. Make them realize that you can have a good life despite a pd dx or (to
spite pd, maybe ?). I'm going to be stepping back for a while. An hour, a
week, a month, a year, I don't know. I'm feeling like deleteing all of this,
essentially erasing my existance here. But, I think the darkness of depression
is creeping up on me, warping my perceptions, making me feel overly self-
concious. I have been sleeping everyother day or two, and its causing me
problems that I need to get resolved. So I'll have to get an appointment, talk
to the dr about ambien for sleeping, and see if the sleep deprivation issue is
what's causing the funk, or if the funk is causing the sleep deprivation. Life
with pd can be a paradox.
I'd like to take this opportunity to say Thank you to the silent majority, who
have kept on reading and let you know, I apprciate your tenacity greatly. Thank
God, and Thank yall for supporting me, holding my hand and providing a safe
haven for me.
Please take care. Love yall toadie
October 25, 2002
At any rate, if you haven't fallen asleep yet, lol, that is where my story
begins.
The other day I went down to the woods to scavenge through the old parts and
such. The dogs, Weenie, Schoocher and our neighbor's dog Bum-Bum follow me
everywhere, so when I go for a ride, they have to ride in the Jeep or follow
along. Christopher has gotten Weenie is so spoiled, that she thinks she has to
ride with everyone, no matter where they are going.
Anyway, when I got down to the woods, Weenie started chasing and barking at
something. She had gotten beneath an old truck and had something cornered. The
truck was sitting on the ground and the only way to see what she was after was
to move some old downed tree limbs, so that I could open the hood. I cleared
the debris from the hood, with Weenie’s high pitched, ear piercing, barking
going on at the same time, and finally opened the heavy old truck hood.
Ahhhhhhhh, Sh**!!
I found a rather large scared and disoriented porcupine, weighing about 35
pounds, trying to find some escape route, moving or attempting to move in
circles, on the top of the old truck’s engine. On reflex, I dropped the old
hood, with a loud bang.
Weenie is tenacious, and has a “big dog complex” (she thinks she is a big dog)
she was digging and flinging dirt, barking ferociously, trying to get at the
porcupine. So I pulled Weenie out from underneath the front of the truck before
she could get loaded up with a face full of quills. I should have guessed what
was under the truck because Schoocher had already checked to see what Weenie
was after and wanted no part of it. She has been tagged by a porcupine a couple
of times.
After I deposited Weenie on the back seat of the Jeep, I managed to gather up
the other two dogs, with ease, loaded them in the Jeep, and took them back up
to the house. The dogs can be like errant children at times. Lol
Porcupines are slow moving, generally like to be left alone to graze and munch
on wood and such. Most of them try to get away from whatever is bothering them
before they defend themselves with their quills. My Dad said that he
accidentally stepped on one in the dark while visiting the outhouse when he was
a kid, and it didn’t quill him.
The quills are very sharp, you have to trim the ends off and squeeze the air
out of the quill’s shaft to remove them with a pair of pliers. Usually the dog
is in pain, discomfort, or scared, so I give them some “magic butter” that
eases their pain and calms them. (A little pat of butter wrapped around a low
dose of Benedryl). The process to assure all of the quills are taken out can be
tedious, long and hard both on the dog and me. So I try to be as calm, quiet
and gentle as possible. It is a necessary evil, lest the puncture wounds become
infected. Unfortunately, I’ve spent several hours removing quills and treating
the wounds, to dog’s faces and bodies when they have had a run in with a
porcupine.
I managed to find a couple of cables to use to put across a couple our
driveways to prevent access. Mostly to keep some (neighbor- a relative term
here) four-wheelers without any regard for the damage they cause, or other
people's property. I would never drive up across their front yard have a party,
throw beer cans and other trash all over their yard. I would never throw the
Jeep into 4-wheel drive to rip and tear across their yards, leaving tire track
gashes in the Earth, for them to deal with. This may sound like an exaggeration
but this is how I compare what a few idiots do, and there is always a rare few
who make any group cringe.
October 25, 2002
An older gentleman built our home in 1976. He was a contractor and did much of
the work himself. He and his wife retired and lived here until they passed
away. The house was on the market for 4-5 years (in estate) before I found the
classified ad in the paper. I knew the neck of the woods it was in, so I had a
keen interest in it and the price was very reasonable. It sat smack dab in the
middle of nowhere, still wild and wooly with bears, deer, foxes, and other
assorted critters. An area where neighbor is a relative term, the closest house
can be a 1/4 to 1/2 mile (or more) away.
I called the real estate lady, who promptly told me that this wasn't a peach or
mauve color scheme house, that an older gentleman had designed and decorated
the house. I said, well ok, may I go see it? She said well, go by and take a
look and if you're still interested, give me a call and we'll make an
appointment so that you and your family can take a tour or what have you.
My brother, David and I went to see the house, standing on our toes in the snow
to peer into the empty house's windows. We were peeking and gabbing, I saw dark
paneling, wood was a predominant feature, a pumpkin colored carpet in the
living room, and of course, the avocado and harvest gold tile with the matching
shag carpet. Most likely the couple were shorter, or smaller people because we
only have 7-foot ceilings. (Chris is 6'- 5") so he has to duck his head
sometimes.
I fell in love with it, called Johnny to let him know about "our find". We all
loaded up (my brother, Johnny and the kids, and me) took a look at the house
again, and then we made our appointment. We got the grand tour.
We bought the house. It sits on a curve in the middle of a dead end road. State
land borders the backside of the 22 acres, and we pay school and property taxes
on it in two counties. The curve is the dividing line, so we are the only ones
on our road to live in a different county. On the rare occasion, when we have
to call the police, the Sheriff and State Troopers argue about jurisdiction
issues. (Mostly the local Sheriff’s deputies or dispatchers).
At any rate the older gentleman that built the house, never threw anything
away. So there are a few old junk cars, trucks and a bus stashed back in the
woods. Some are filled with pieces, parts, nuts, bolts and other assorted
hardware. The top of my barn had the parts and accessories for most of an old
John Deere tractor, to include windshields and bumpers from assorted vehicles.
I spent most of last summer evicting the parts and accessories from the barn’s
attic. I cleaned it up, built shelves for storage, hung some old Christmas
lights and turned it into my workshop/studio/hide-away.
Did I mention that one day last week, I had to stop for a 400 pound hog in the
road. Christopher and I stopped to let someone know about it when another
neighbor man stopped by. The hog belonged to a guy about a half mile up the
hill, he said. He chased the hog back to his owner. He told us that the hog
had "broken out" of his pen (by completely tearing the fence down). But the hog
had been happily munching on various neighbors flowers and making the
neighborhood dogs mad by scarfing up their dogfood.
October 25, 2002
The repeated visits of the boogieman in our woods have given me pause. We have
taken a good look at the security for our home and garage. We installed new
locks and hasps on the doors in the barn where it was required. We did some
routine stuff to maintain security. So that once you get inside the house or
barn, no one is getting in there with you, and you can leave it without worry.
With the advent of colder weather sinking in, and the beginning of hunting
season, our boogieman has only put in one visit in the last two weeks. Last
week I heard noises near the side of the barn by the woods, so I started the
Jeep as quietly as possible, turned it around to face the woods, using the high
beams to pierce the dark. It scared him out of the woods. I heard him running
through the thick undergrowth and trip over a fallen tree, landing with a solid
WHUMPH! Followed by a male voice saying, “oww! sh**!”
He got back up and left. I haven’t seen or heard from him since. But, we think
it might be someone just passing through the property while they are enroot to
another destination or perhaps poaching. Hunting out of season or at night. In
which case the poacher needs to exercise more caution, so he won’t be injured
accidentally by another poacher hunting on State’s land or our’s by an
inexperienced hunter.
October 16, 2002
If you'd like, my new addy is (toadie_64@hotmail.com) I'm not good at keeping
my end of the e-mail because I have so many hit or miss days. I may just take
some time to do some painting. see ya after a while,
take care,
toadie
October 13, 2002
You know, sometimes, I don't realize that I have so many stories that may seem
horrible, depressing, or bad to someone else. I've carried these stories around
for so long that they don't seem all that bad, they are a part of me, a part of
growing, learning and changing. These stories went into making me who and what
I am, whether it's a tale of my dysfunctional familiy, or some turbulance along
the way. The rough and unvarnished stuff created strength, character,
resilience, and tenacity. At least I would like to think so.
I can still find the good in just about everything. I can still be thankful for
every breathe I take.
Life is too short to hang onto a load of the negative, to allow the darkness or
bitterness to overshadow the light. The light of love, happiness, joy, and
feeling like all is right with the world. I just let it fall away from me when
I can, it's just a part of living to learn, forgive, and move on. Forgiveness
doesn't mean that you condone what was done, have to have the same relationship
with who (m?) ever, it' helps you to heal.
There really is a brighter day out there, you know. I can hear you now, yeah-
yeah and all that happy doo-dah. Well I'm going to send this out before it gets
lost in cyberspace. I do't really know if anyone is reading this or not but
it's here.
October 12, 2002
There was a question from AnnT on the MGH PD forum about turning 21. I thought
my rather lenghthly reply would be better suited for here. So here it goes,lol
21st Birthday
http://neuro-mancer.mgh.harvard.edu/ubb/Forum71/HTML/007200.html
It was a time pre-pd, and pre-Internet. I weighed about 100 pounds, I worked
out with weights an hour every other day, ran 4 miles every day, and was still
practicing some gymnastics. I ate whatever I wanted, whenever I wanted, and
didn't worry about it. I didn't drink alcohol (for 10 years), and had quit
smoking. I had even stopped swearing. I suppose, in some ways, I was the
healthiest physically, mentally and spiritually that I had ever been in my
life. Financially, I won't even get into. Lol
We lived on a Military Base in San Antonio, Texas, a place I grew to love
because of its rugged beauty (it was also a virtual cultural melting pot and
the town never sleeps). I also learned to dislike it, at the same time, because
all the houses were bunched up, so you looked out your living room into someone
else's living room or house. Acccck. Its crime rate in 86 was ranked #3 or 4
over a #7 Atlanta and #9 New York (City).
On my 21st birthday, I was diagnosed with Severe Cervical Dysplasia, with pre-
cancer cells present. I underwent a series of tests, more tests and several
biopsies. I was advised of various treatments and at that time I was given
surgical recommendations for complete hysterectomy.
I had been married all of 3 years, I had 2 children, one less than 2 years old,
the other was only 3-4 months old. I had heard the Big "C" word. I had assumed
it meant death. I went through a special kind of hell over the next few months,
waiting worrying, wondering about the tests and what was next.
I worried about things like: What to do? What about my kids? What about Johnny?
I went for a Second Opinion and when none of the tests results came back the
same or conclusively as my first sets of tests from the military hospital.
Subsequently I went for 3rd Opinion and another series of tests, which had the
same results as my 2nd Opinion Doctor's.
To make a long story short, (or longer) the test results in my military medical
file had been misfiled. I had someone else's test results. Ultimately, I was
fine. My health was fine. However, it was an up-hill climb to have all of the
other patient's tests result filed properly and have her notified of the
mistake in filing. I didn't rest, or drop it despite all the red tape, in order
to make the military hospital correct its mistake.
I felt that she needed to attain appropriate medical treatment, without proper
treatment, the results could be fatal. The weight of someone else’s life was a
heavy thing for one so young, at the time. But, I couldn't put my head down at
night, without knowing with certainty that she was getting care.
Medical treatments have made so many advances. Here's a site about Cervical
Dysplasia. http://www.gynalternatives.com/cervical_dysplasia_treatment.htm
Since that time, (thankfully) things in my life haven't been quite so dramatic.
I learned not to trust everything a Doctor says as gospel and that they aren't
as infallible as I had once believed. I learned to take responsibility for my
medical care and that of my family. I learned to research everything. I
wouldn't want through go back to that period of time, but I gained many
valuable life lessons from it. Many of which have helped me with coping with a
diagnosis of Pd at 26.
Here’s a little time line of a few years of my life, if it is of interest, I
don't mean to over share.
Hmmmmmn, I had been very busy.
June 82 - I graduated HS, at 17
July 82- I joined the Army (after 3 of my scholarships had been declined for
me "in my best interest".
Sep 82 - I turned 18
Jan 83 - met the Light Of My Life
May 83 - Married my Robert Redford look-alike
June 83- Medical (Honorable) Discharge from Active duty into Reserves due to
complications with pregnancy (elevated BP, ect)
December 83 I was 19, and had my 10 pound 4 oz, daughter- Jennifer - (I had
gained 35 pounds & losing 55 pounds over the next 3-4 months
June 85 - I was 20, and had a 10 pound 1/2 oz, son, Christopher (I had gained
40 pounds, losing 50 pounds over the next 2-3 months)
September 85- I turned 21 and was (Mis-) Diagnosed with Severe Cervical
Dysplasia
October 09, 2002
I’ve been over doing it all.
I wnet down to the woods and cleared out a trailpath using an axe to chop down
smaller trees. There is an old school bus filled with old saw blades, nuts,
bolts an assorted other parts. My goal is to clean out the path so I can ride
back in with the Jeep to get some old but useful stuff out of the bus. So my
shoulders have been sore for 3 days now. lol Someday, maybe I'll learn. Not
very likely though.
I’ve spent a good bit of time tidying up the top area of the barn (our garage)
and managed to turn it into a creative haven. I strung some old Christmas
lights up, you know the ones that get so tangled up when the kids put them away
that it takes three hours to untangle them. Then when you finally get them
untangled and plug them in, there’s one bulb blown somewhere on the string, so
that section of lights won’t work. So you have to test each of the 30 bulbs in
that section, to find out which one isn’t working. Accck..
I’ve been doing some painting, re-finishing in some cases, as well as sanding,
staining, and finishing new projects or furniture. I’ve also been doing some
stenciling on a medicine chest. I decided to sand, repaint, and stencil our old
bathroom medicine cabinet, rather than spend about fifty plus dollars on a new
one.
So I trudge out to the barn with all of my noisy projects. It’s where I like to
go to draw, sketch, paint, do my charcoal drawings, sort out my mental laundry.
Actually, I go out to the barn whenever I need some quiet time and space for
myself. I take Scoocher with me, she’s our beagle mix, she and the cat follow
me everywhere, anyway.
I like to leave the back door open and sit in the dark to watch the starry
night sky, feeling the windy breezes, or just watching the clouds roll by. I
watch the sun rise, as bright colors creep and sneak into the night’s inky blue
domain, as night gives way to the day with a resigned sigh. The birds are
boisterous at 4:00 a.m. in the summer, however, with the coolness of autumn,
they don’t start their din until well past 6:30 a.m. By then, the morning mists
creep out of the woods and into the meadow, stealing across open fields,
shrouding areas in thick fog that burns away with the sun’s piercing rays.
A couple of months ago, I heard noises out in the woods behind the barn, at
first I thought it was deer walking or feeding at night. As I listened the
sounds became clearer, there was someone walking near the side of our barn, in
our woods, it was about 2:00 a.m. I just packed up my toys and headed for the
house. I told Johnny about it in the morning and of course, he poo-pooed me
saying, don’t worry about it, it’s probably just dogs or deer.
Then one night, Christopher and I had just gotten home from a (my parky time)
shopping trip, about 11:00- 11:30 p.m. I had just parked the Jeep in the barn
and gotten out, when we heard a scratching noise at the backdoors. I thought it
had been one of our dogs, so I opened the door to investigate. There was the
distinct sound of someone walking back into our woods. Christopher bowed up. He
yelled into the night woods, then he went up to the house to get a flashlight
and his Dad. They scoured the edges of the thick woods in the dark, to no avail.
Johnny was very unhappy about all that. (but he no longer poo-pooed me. He
could only assume they were up to no good. He didn’t know if they were staking
out the barn for our motorcycles, or his tools, or the off chance they were
stalking me. I was too scared to entertained that thought.
Since we don’t know who it could be, or what they are doing walking around in
the dark through some of the nastiest part of our woods. It’s thick with
thorns, brambles, stick-tights, mossy and jagged rocks, uneven ground, and an
old barbed wire fence that is still up in places. They must know the woods well
enough to walk it in the dark. We thought it might have been a certain
neighbor, because all the night woods walking noises stopped for about a month,
after he had been arrested and subsequently jailed, for threatening to burn
down his neighbor’s house.
At any rate, about 5:00 a.m. Monday, I had finally turned out the barns lights
to take a nap, when I saw some lights reflecting from the very back of the
meadow behind our barn where it borders with State land. I watched in the dark,
as someone pushed, pulled and hoisted on their 3-wheeler to turn it around with
out starting it. I don’t know who it was, how long they had been there, if they
had been sitting in the dark all night, or why they were there. When it was
daylight I went down and checked the tracks, it was a 3-wheeler. They are most
likely just staking out the barn for Johnny’s tools or the 3 Harleys, Chris’s
Honda and Jennifer’s old Yamaha. Apparently they wanted to leave without being
noticed.
There’s not much I can do, other than lock up the barn at night and stay in the
house. But, it still pisses me off. This is our home, our property. I suppose
that a tremor dominant parky with a rifle should be scarey enough to send the
biggest badass away. But, these days you can never tell what is in someone’s
head, or what has made them the way they are, drugs and alcohol can make an
untrustworthy idiot out of anyone. I have no idea of why they are there, or if
they are armed or not. I sincerely hope they not.
October 02, 2002
Johnny and I had a long talk. No more long road trips for me unless he can go
with me. He says he just worries about me too much, he gets besides himself. PD
is a large part of it, and a smaller part is the road itself and the way the
world today is another part.
I can understand why he gets so worried, I know it's because he loves me and
that he is genuinely upset by waiting and wondering, even if I call frequently
he still worries. I give his feelings heavy consideration, he already does so
much for me and the kids, he must get exhausted from trying to take care of me
and working full time.
Although, I am not liking the idea of giving up road trips to pd, I can not
allow my pride to cause my husband undue worry, hardship, or anxiety. I do not
want to become a burden to anyone, much less have someone I love so dear,
constantly agonizing over my health, safety, and well being. It sucks but there
it is.
September 28, 2002
I am putting this here, because I wasn't sure if Carol got my e-mail. Johnny
said he didn't get any e-mail from me when I sent some to him.
Dear Carol,
It is with our love and from the depths of my heart that I give you this
writing. I hope this will capture a part of his spirit on paper. I know Carl
would be embarrassed by all of this, but I hope he would be smiling to know
that we noticed what a wonderful, kind, caring, loving and generous person he
was. I have a couple of pics that you might like later or when you are feeling
up to it. I would imagine that everything must be overwhelming and sort of
surrealistic for you (and Erika) right now. Please know that we love you both
and care for you so much.
With all my love,
toadie
An Uncommon Man
He had a boyish grin that lit his whole face.
His eyes were so expressive that they spoke volumes.
His eyes sparkled and danced with life, merriment, laughter or gleamed with
genuine interest or darkened with a shared worry.
His eyes allowed a glimpse into his warm and open nature.
He offered his hand in friendship without condition.
He generously shared of himself, his time, patience, and understanding.
He offered his sage advise, wisdom and knowledge in a helpful and caring way.
He had an ease about him that is only seen in people who are genuinely at peace
within themselves.
I admired and respected Carl for his intelligence and many fine qualities.
His deep love, devotion, dedication, and respect for his wife were clearly
evident for all to see.
My husband and I had remarked many times about how Carl always spoke so highly
of Carol.
It was refreshing and plain to see that Carl absolutely adored Carol.
Indeed, their relationship seemed to have been strengthened through the
adversities of PD.
They seemed to share an unbreakable bond that marked them as soul-mates,
forever.
I feel very privileged, honored, and fortunate to have been able to meet both
Carl and Periwinkle in person.
I have read so many of their valuable contributions to the MGH forums and the
PLWP sites in the last three years.
I will miss Carl’s easy smile, his kind and caring heart, and his plain, no-
nonsense way of looking at life.
He had a generous spirit who lived, loved, laughed and shared the positive in a
way that no one else could.
I have only to look at the twinkling of the stars in a Summer’s night sky to be
reminded of the wonder of an uncommon man.
September 15, 2002
15 September 02
(about 10:00 a.m.)
I’m not very good at talking about my own real problems. I’ve always been very
adept at acting like I feel much better than I really am. I suppose I am
difficult to “read” person, anyway. But, I feel like I can talk about this in
the relative safety of my journal. I will send this out as a mass mailing, in
hopes of reaching out to those I know and love.
The darkness of depression had nearly engulfed every aspect of my life. The
vicious cycle of sleep deprivation was feeding into the depression, causing my
symptoms and meds to fluctuate even more. The depression from symptoms
spiraling out of control and the violent bull riding dyskinesias from protein
interferences, had taken more than a pound of flesh. Also, combining the time
it takes to fine tune meds and adjust to changes in dosages. All of this had
gone well past a pity party. I had sunk.
When I had bought my motorcycle, I had intended to work until it was paid off.
However, sometimes life with Pd has ideas for your plans. I have been retired
for a year, now. I had to face the reality of selling my motorcycle as a way of
solving some of our financial woes. I don’t get to ride as much as I used to.
But, it has its sentimental value in what she has represented to me. The biting
reality of losing my bike is like reaching up and tearing out my own eyes. I
know that the bike is just a thing.
My Harley has become a part of me, she was a dream made real, I need to feel
that sense of peace and freedom, the joys of seeing and feeling nature closer
than you can in any other vehicle, the call of the road and wind. It was also a
battle with Pd and me that I had fought long and hard to win. At this point in
time I need to be able to see, hear and touch this 500 ponds of steel. I know
its “just” motorcycle to some people. I cannot explain the unexplainable need
to ride a motorcycle. Basically, I haven’t been able to take losing one more
thing to pd. (I don’t get to ride as much.)
I finally discussed my fears of losing my bike with Johnny. He looked
everything (the bills and such) over and determined that I could still keep my
bike.
My own judgment had become clouded. I had no ambition to be or do anything. I
am 37 years old and in the advanced stages of Pd, I depend upon and consume
some 510 pills a month, but the meds aren’t always working. My balance is
becoming more affected. I do what I’m supposed to do but the PD keeps
progressing. I may or may not be a DBS candidate. I still think of DBS as a
short-term fix for a long-term problem, but it has been a blessing and miracle
for many. What if I am a candidate? Will I have to have brain surgeries every 3-
5 years? I couldn’t tell how far gone I was, until I had the prevailing
thoughts of “When is it going to stop? I don’t want to do this any more, it‘s
too hard.”
That is not a good place to be. I had to ask Johnny to help me. Everything had
become too overwhelming. Just calling to make an appointment was too much,
because I would end up with the answering machine receptionist thing. You know,
the one that the Drs office has that says; for the eternal run around - push #
1, for more problems than you already have - push #2, or to do the hokey pokey -
push #3. When everything is too much and too big, the last thing you want to
deal with is an automated response.
The descent into what I had no longer thought of, as a temporary hell was a
slow and gradual one. I was impatient because it was a somewhat slow recovery.
I have been taking Effexor, slowly titrating the dosage as per the Dr. Maybe,
somewhere in my mind, I was expecting to “bounce” back or take anti-depressants
and feel instantly better. But, it doesn’t work that way. It takes a lot of
time, effort and work.
I suppose that I should offer my apologies for stepping well back, at times no
communicating or just plain hiding from the people who know me well and love
me. I know how much energy we expend contending with ourselves, this disease,
how heavy a toll all of this stuff can be on our relationships and us.
Honestly, I was afraid of pulling anyone else into the dark with me. At the
time, I didn’t see or understand that they might have been able to reach me and
help pull me out sooner. Please forgive me. I don’t think anything has scared
the crap out of me quite as much. I am slowly getting and feeling better.
September 03, 2002
The dredges of darkness are finally lifting like a foggy veil. I haven't been
sleeping. I think I've slept about 4-6 hours this week. It would be nice to
have it all at one time but, it doesn't seem to work out that way for me.
Our land borders up against State Land. It is nice because we aren't likely to
gain any new neighbors soon. I've been out working in the barn (actually it's
a big boxy 2-story, 4 stall garage but it's barn red so that's where the "barn"
comes from) I finished building a cupboard, sanding, staining, and put
polyeurthane seal on it. I figure that if I can't sleep, I might as well do
something useful.
The other day I was outback, walking in our woods, when I happened upon a small
buck. He was about 1-2 years old, with 2 stubby antlers that were about 3-4
inches tall and two small buttons (horns) in the front. He stopped in his
tracks and looked at me. He cocked his head to the left and then to the right.
He was gazing at me intently, trying to figure out what kind of critter I was.
He was about twenty feet away from me when he stomped his left front hoof at
me. I stomped my right foot at him, trying to mimick him. He blew, (whew) at
me. So I made a blowing sound back. He stomped his left hoof. So I stomped my
left foot. He suddenly darted off the path we were on, his white tail flagging,
and hid. He peered at me from his hiding place behind a small branch that was
about the size of a broom handle.
September 01, 2002
I'm not trying to blame anyone else for my mistakes, I do have regrets for some
of the things I've said or done. As a part of trying to set things aright, I
can only hope to learn and not repeat those same mistakes. Sometimes it is very
hard to deal with the changes from progression. I feel that I have to visit the
bin of "I used to be" without rolling in self pity. I think there have been a
lot of misunderstandings that Johnny and I are trying to get straightened out.
We talked about some things and he is taking the checkbook back (much to my
relief.)
Fear and anger are only a few letters apart. I think love will have to overcome
what obstacles present themselves along the way. Even if the obstacle happens
to be me.
August 30, 2002
Oh my, the month has flown by. I haven’t been on-line in weeks because I’ve
been so busy with the kids and around the house.
I had an excellent “On” day, rode my bike to the shop to get the tach and
speedometer fixed as they had stopped working about 2 months ago. It turned out
to be a burned out ground wire. I had such a good day, but I paid for it about
a week.
There hasn’t been much rain here, and we have a well, so I have had to start
taking the clothes to the laundry to wash. I found a stray cat while waiting
for my clothes one evening. I already have four dogs so I wasn’t sure if the
cat would get along with the dogs or if the dogs would bother the cat. But,
they all get along quite well. Kitty likes to lay on my mouse pad and walk
across the keyboard. She also likes to play with her reflection in the
monitor.lol
Christopher had his hernia surgery yesterday. When woke up after he came out of
surgery and was in the recovery room the nurse asked him if he was hungry and
offered him some muffins or toast. He asked for meat. lol He is recovering
nicely.
Jennifer decided to work over the summer to save for college. A few weeks ago,
she quit her two part time jobs to take one full-time position on a
construction crew for a local general contractor. She drives a backhoe, has a
tool belt, hammer, measure tape and a about a hundred black and blue spots from
lifting and lugging on equipment.
I had one jealous wife and a girlfriend call. Their husband or boyfriend have
never worked with a woman before, so they were feeling threatened by Jennifer.
I think I was pleasant to them.
I think Jennifer is befuddled as to what she wants to do. I don’t know anyone
who had a definite idea of who and what they wanted to be at 18. I told Jen
that it’s ok; it’s all a part of the journey. Learning, falling, getting skid
marks on your face and learning to get back up. The only way not to make
mistakes is if you don’t do anything.
The heart is such a fragile thing. My mind is a full of confused and rambling
thoughts. I’m not sure where to start really, but I guess I should start at the
beginning, or at least what I think is the beginning.
I have been having some problems, over the last few weeks. I can’t seem to
communicate well with others. I have a hard time talking about things in
general, searching for routine words, stuttering, fumbling and faltering, only
to have some cuss word fall out with ease.
Over the years I’ve gotten to be more like my father. Although my dad wasn’t
formally diagnosed with Pd, we had the same tremor, I had even let him try some
of my Sinemet and it had worked. But, Dad said he didn’t want to take any more
GD dope. Dad was private (as in keeping a lot of things to himself), guarded,
reserved and grumpy to a degree. He didn’t sleep at night, often for days.
Usually I’m grumpy when unrelenting or unrelieved pain has been an issue. I
have tried everything to induce sleep, but I still can’t sleep at night. Not
sleeping for a few days causes my symptoms to increase and my patience level to
become nearly non-existent. By the third day, I try to steer clear of everyone
and everything. It’s all too much for me; I’m either as silly as the day is
long or as charming as a wounded Grizzly bear.
At any rate, Johnny’s 20 years of service (Army) comes in handy, because I can
be as blunt as a sledgehammer and colorful with my adjectives.
There are times when I think I’m being plain and clearly conveying an idea or
whatever I’m trying to get across, only to feel that I’m speaking in tongue.
Especially when Johnny gives me that look. You know, a perplexed look of “What
are you talking about?”
I get frustrated. I suppose we both do. But, sometimes, I have to wonder if the
real reason that he’s staring at me with that look of bewilderment is because I
put my bra on outside of my clothes. (As far as I know, I haven’t done that,
yet. lol)
At any rate, when I stopped working Johnny handed the checkbook over to me to
do. When he had retired from the service in 1995, he had taken it over for me.
At that point in time I was working as a drafter/designer for a louver company
in Alabama. For about 2-3 years my average workweek was 60-70 hours,
occasionally a project required even more. Our workload was so heavy that we
were working Monday through Thursday for 12 hours (6:00 am - 6:00 pm) then a 10
hour Friday (6:00 am - 4:00 pm) and 6-8 hours on Saturdays (6:00 am- noon or
2:00 pm). The drawings were highly technical; the grueling pace of work was
both mentally and physically demanding to keep up with. I used geometry and
trig calculations on a daily basis. I simply had no time to do the checkbook,
spend money or live for that matter.
All I had to do was go to work and make money. Frankly, I liked it better that
way. I didn’t have to worry about the bills and such because Johnny did all of
that. If we ran short or needed extra money, I just worked more. I wasn’t good
at a lot of things but I was good at making money. In retrospect, it came at a
high cost. My health and relationships suffered. I had to get to know my kids
again when I left that job to move back to New York.
I wince when I think of the times that Johnny or the kids would ask me why I
worked so much, and my reply was “you like to eat don‘t you?”
Well, I got off on a tangent there. Anyway, I kept telling Johnny that I
couldn’t do this (the checkbook) anymore. I’m impulsive, I forget to mail
bills, sometimes the days blend together and I don’t even know what day it is.
But, I forced myself to be organized. My obsessive-compulsive tendencies
feasted on it, I made calendars of the dates when we get paid and all the
bills, when they come in, when they are due, and how much is due. Finally
making a listing all of the bills for the entire month by the dates due.
I would check on the Internet banking to make sure I had written down all the
debit card charges. But, I still screwed up the checkbook. I forgot to take out
the automatic installment payments (the bank takes loan payments directly from
the checking account.)
Prior to finding out that I had made a mess of the checkbook, I had asked
Johnny if I could go on a trip. Well, after the combinations of my screw ups
with the checkbook and my forgetting stuff around the house were too much for
Johnny. He was very unhappy. He blew up. All of a sudden everything that he
was unhappy about for the last 6 months came out. I wasn’t sure if I knew this
Johnny. I had thought things were fine,
I think he has been feeling neglected. He didn’t want me to go on another trip,
traipsing around the country by myself. I’m spending too much time on Pd stuff,
and spending too much money. I’m cheap so I spend about $20 at a time.
Shoes are my downfall - there’s not much to compare with finding a good pair of
shoes on the clearance rack for rock bottom prices and hitting the Dollar
stores and such but it all adds up. So, it’s not just my impulsive spending.
I’ve spent too much time, attention and money. I’m trying to make amends. As
bad as I made a mess, he still doesn’t want the checkbook back. I don’t want it
either, it’s too much responsibility for me.
It seems like when you think you have figured out the rules, something happens
and you find out you’re not even playing the right game.
August 08, 2002
I've been having some revalations. I took some advice from a good friend. I'll
explain later. I have to go pick up Chris from summer school right now. gotta
go.
August 05, 2002
Learning to fall, learning to fly.
I've been busy wrestling some of my own pd demons. I am grateful to those who
have encouraged and supported me, it helped me to step back and gain another
perspective. I'll be ready to write that story soon.
My daughter finished her English class in summer school. She is waiting for her
diploma to arrive in the mail.
She had a falling out with her "best" friend Marie. Jennifer called Marie to
visit with her (as usual) one day last week, when Marie informed Jennifer that
she was going to be making changes her life and that Jennifer no longer had a
part in it.
A tearful Jennifer replied, "So, you're saying that I'm not good enough to be
your friend, anymore?"
Marie said, "Basicly,yes."
This was so out of character for Marie, I was dumbfounded. I could find no
other reasonable explanation to comfort my daughter with. The only thing I
could tell her was that perhaps she's angry and lashing out at you.
Marie did the was the usual "telling the friends", amused that she had made
Jennifer cry.
I told Jennifer that it should serve as a warning to their "friends" as to
Marie. Perceptions are not always as they seem.
I couldn't understand the need to be so mean. There usually is a lot more going
on than what I'm being privledged to. The group dynamics of teens rarely makes
sense to me.
Generally I stay out of the children's business and try to let them resolve
their own difficulties. However, I am tempted to step in on this to get to the
bottom of this mess.
(Perhaps, at least to have my say (which will have to be heavily edited so, I
will sound more mentally challanged than I already am. I think my head would
explode if I absolutely could not swear.)
I have been there several times, with family, friends, co-workers, even a few
pwps, ect. I remember what those words felt like. I've tried very hard not to
do that.
I chose to walk away. Scarred but somewhat wiser. A lot less trusting, maybe a
little tougher. I suppose it's one of the reasons I have shyed away from
people. I've accumulated a wall around myself, that few are allowed within.
I just don't want my daughter to have to become leathery like me, but I suppose
that unfortunately, it is all a part of growing, changing and learning to fly.
Jennifer has a kind and forgiving heart, I wish that mine was as kind and
generous as hers.
What does this have to do with pd?
I'm not sure, but I suppose being as kind and forgiving to ourselves as we are
with others is another one of those areas that I need to work on.
Lately I've been working on stuff around the house. I've been backing away from
the computer slowly but surely. Most of my e-mail is spam now,so perhaps it's
getting time to step back some more. (I appologize if I have neglected you.)
July 25, 2002
I don't know, I'm not sure of what I'm looking to do with this journal. It
seems that I'm serving my own selfish interest, sorting my own mental laundry.
I had started this with the intention of trying to help someone know they
aren't alone. To let someone know that it's ok to hurt, it's ok to cry, it's ok
to get pissed off, just get back up, always get back up. And if you can't get
back up, someone can and will help you, just take a hand. Asking for and
accepting help, well, that takes time. Any advice?
July 23, 2002
In the similar spirit of some other journalists, in case anyone has missed my
warped theories of living with pd, they're rather a simple ideas.
don't take anything for granted
(that means you should be nice to the your significant other and make sure you
let them know how special they are, maybe ask them out for a date?)
live life [b]outloud[/b] (a little louder can be nice, you know)
do the best you can with what you've got
try to find humor in everything if possible, it helps
and it takes more muscles to frown than smile.
and don't forget to thank the Big Man upstairs, (I appologize for my blank draw
or lack of wording to accomodate political correctness)
well that's it for my 2:00 am outburst,lol
July 23, 2002
I started a small project today and sorted out all of my tools, sandapaper,
screwdrivers, saws (hand saws), putty knioves, scissors, drill bits, ect. I
decided to undertake the project of putting contact paper on a rather large
shoe box that had a handle. (yes, Chris's size 15 boots originally resided in
the box)
Needless to say, I won't have to shave my legs for months, as a matter of fact
it will take months for any body hair that got caught by the errant contact
paper. I'm just glad that I didn't get the sticky mess wrapped around my head.
Personally, I'm starting to feel that the sale and subsequent use of contact
paper to tremor dominant parkies should be illeagle from this day forward.
But, the box came out so pretty that I don't want to store my assorted
sandpapers in it. oh my....
July 22, 2002
I followed my New York bound brother and the boys, up 95, until it was time for
me to turn off and head for North Carolina. It takes me a good deal longer to
get places driving by myself, mostly because I prefer driving at night. I tend
to dawdle more in the daytime. I stop for as long as I need and when I need to.
I realized some time ago that my body is in a whole different time zone than
the rest of my family.
But, this time I had a particular destination in mind. I started calling my
friend but was unable to reach her. But, as soon as I got within the city
limits signs I called Johnny and he was able to get hold of my friend. Actually
when I had called her house the line was busy, Johnny was speaking to her. We
finally got hooked up and we were able to meet at a rest stop not far from her
home.
I've been searching for the right words to describe staying and visiting with
my freind for a few days. I'm not sure I'll be able to do her justice but I'll
try to convey what's in my heart. The visit was somewhat humbling because she
already has so much stuff going on in her own life, but she set her own
problems aside and helped me sort out all the gunk in my head, but I think it
helped her at the same time. Her spirit is very giving, a gentle salve for my
road weary soul. My visit with Sandy was very healing.
I didn't realize I had so much baggage until we started to talk about
everything and anything. I found myself sorting out things that I hadn't
realized were bothering me. An accumulation of stuff. I don't open up and talk
about things, I keep a lot to myself.
I believe that generally speaking, you can't change anyone but yourself and
that you can't expect to change how someone thinks or feels with a few words,
especially when there's often a lifetime of experieneces behind them.
However, Sandy had a way of restoring my faith in people, just by being
herself. No, she doesn't walk around the house polishing her halo or wearing
pink chiffon, or some other fru-fru thing. lol She wears a tee-shirt, her bib-
shorts and bare feet. Just like me.
I'm used to getting a large pizza with Christopher, it doesn't last long. But
with just the two of us and a large pizza, we ate pizza, for days. We stayed up
late, doing regular girly stuff and a little parky stuff, chatting, and talking
in our sleep. Sandy didn't seem to mind me sleeping in her arm chair. (I do
that at home, sometimes.)
I worried about Sandy because she wouldn't eat her supper by herself, she would
wait for me. I don't eat until real late because of the protien intereference
with my meds. I also worried that I would scare her when I had a bout of
dyskinesia and dystonia that would rival bull-riding. But, she is made of
tougher stuff.
At any rate, I hope you can tell that I had a really great time with Sandy. I
just can not say enough good things about her to let you know that she is just
as wonderful in person as she is on the Porch. The peaceful feelings of
finding, meeting and getting to know your long lost sister, being yourself,
warts and all. Sharing so much in common, sometimes it got a little spooky,lol.
I hope that she had fun too and that I was able to help her close to the way
she helped me. I have been somewhat selfish about sharing my visit with Sandy.
I was thinking to hoarde it all to myself, but, I reconsidered and tried to
find the words that would bring such a beautiful person's spirit to life on
paper.
July 18, 2002
Jennifer and Christopher had summer school. English bit them both in the butt.
Johnny wasn't able to take time off from work. He would have enjoyed all the
festivities, foods, meeting and visiting with new people. I tried to be on my
best behavior and step outside myself and to try to enjoy everything as it came
along.
At times, it all got to be a bit much for me. I tend to be shy and prefer to be
outside doing something. Anything outside. I tend to sit back and observe
others without being intrusive.
South Carolina was beautiful. It's very hot this time of year, so we had to
tease the kids about getting married in July. January or February (when it's
snowing and temps drop well below zero here) South Carolina would be absolutely
georgeous weather for us. lol
My new niece's parents are a very nice couple.They really are lovely people.
They are polar opposites in many of the same ways that Johnny and I are. Her
Dad is as outgoing as her Mom is shy. He is also retiring after 28 years in the
Marine Corps.
I mentioned that he will probably go through a sort of identity crisis. I think
it's a phenomena that happens when you have big changes in your life, careers,
a new family, loss of a loved one, or due to change in your health. Always
questioning yourself, checking and re-thinking priorities, and learning to
accept all the things that change inevitably brings.
I had to tease my new niece about washing out and wearing one of my favorite
Harley tank tops to the Wedding. Her jaw dropped to the floor in a most funny
way. She continued to be polite and courteous while she tried to tell if I was
serious or not. The whole time my brother and sister-in-law had told the kids
that he was wearing jeans and a shirt to the Wedding, and that was that.
I had stayed up two nights to make an album as a Wedding Gift. I had scanned in
a bunch of pics from when Joe was little and then his Mom add captions or
whatever she liked to. It helped my sister-in-law through the jitters. It gives
Rachael something from the past and with many blank pages, she can start her
own new family album.
As they say down South, we clean up real good. My brother looked sharp in his
tux, my sister-in-law shimmered and my nephews gleamed in their tuxes. My other
new niece looked beautiful, as usual. I wore a coral colored dress instead of
my Harley shirt and shorts, but I took the pics, so you don't get to see me in
it. My nephews said I looked real nice (their check is in the mail)lol.
The Reception was fun. There were little silver bells on the tables and when
you rang them the newly weds were supposed to kiss. A little nervous energy and
my right hand tremors, so I teased them by letting the bell rest in my parky
hand. I told them that they would wear out before the tinkling bell would.lol
After everything. We all went back to our rooms to pack for the ride home.
July 17, 2002
roses
i think back
conjuring many memories
some muddy, murky with time
swaying ever so softly
to and fro, gently
time has no meaning
dancing with the light
a long kiss by a summer's knight
the cool breezes enraptured
the pages
change so quickly
defie that horrid dragon
fireflies glowing
gentle breezes blowing
time has no meaning to her
she tightly wraps her arms around her love o'light
as she heads into that long good night.
with every bit of fight defiance her delight
July 16, 2002
Well, I’m back. I had been on the road for about the last week and a half.
Almost two weeks. I’ve been busy catching up with Johnny and the kids. Doing
general household stuff. Cleaning out the fridge, getting groceries, doing
laundry, and such. It’s amazing how quickly time passes and stuff to do
accumulates. Lol
Long road trips take a heavy toll on me, traveling, as a group was a little
more difficult. Sitting still for hours at a time, having to take my meds on
time, not being able to eat because of protein interferences, not being able to
stop and move around, as I would like are some of the problems. Minor
inconveniences to some people but with Pd, they can be major challenges.
To me, it all depends on what you are willing to do and for whom you are
willing to do it (all) for. There are some people that, I don’t mind
doing “whatever it takes.” However, most of us know that there are times when
no matter what you are willing and wanting to do, your pd riddled body will not
allow it, and you just aren’t able to do.
The road to South Carolina was long hot and humid, but we made it. The weather
was sunny and pleasant, so I took the top down on the Jeep; I had thought it
would be cooler with the top down since I don‘t have an air conditioner. Not a
good idea for a long road trip. Air conditioning is a plus but not really
required up here. However, I had forgotten that in the South, air conditioning
is a not luxury but a necessity.
We traveled as a caravan of 3 cars with my brother and sister-in-law in lead,
Jason (my oldest nephew) and me in the middle and Mike and his wife Tera (the
middle nephew) in tow. We had a late start, about 11:00 am. So the anticipated
17-hour trip turned into a grueling 24 hours. We stopped to rest for about 4
hours at a rest area in Virginia. There were only a few light smatterings of
rain but it helped to cool off the ride.
After spending the majority of the day being blistered and pounded by the sun,
heat, humidity, wind and passing tractor-trailers, my brother and my nephews
helped me put the top up for the night. My brother and my nephews helped drive
me about half way to Virginia. I hadn’t slept the night before the trip and the
combination of heat, humidity and trying to maintain a “regular” people’s
driving pace, played hell with my Pd.
My nephew, Jason, was driving and I was riding shotgun, when I missed my meds
by 15 minutes. I ended up in full throttle tremors. My head, neck, jaws,
tongue, hands, arms, feet, legs - in other words, anything and everything that
can tremor, will. It scared the tar out of Jason. Because it all happened so
quickly and he hadn’t seen me in full blown tremors in such a long time.
After we stopped to rest for a while, I felt a whole lot better. We started
back on the road at about 1:00 am. My brother and sister-in-law rode in the
first car, I rode solo, and my oldest nephew followed us up in the back as he
drove for his younger brother Mike. My brother and I fell into a groove. I ran
block so he could pass cars and tractor-trailers with ease and weave through
traffic, as we needed to. Since everyone else was asleep we didn’t have to stop
as often and made good progress in time and mileage. I drove about 9-10 hours
straight. Eventually, turning the Jeep’s helm over to Tera.
We all were hot, stinky, sticky and bone tired. Regardless, we made it in about
10:00 am Wednesday morning. For me it was around $60 in gas.
The wedding was planned for Saturday, (July 6 at 3:00 pm.)
I'll have to do this in installments.My time and attention span are shot. I
really must appologize to those I have alienated in my travels. I have a narrow
focus at times and don't mean to overlook anyone.
In case anyone is interested I've put the wedding pics on a my pwp web page.
here are all the addys of the albums I added to Webshots
Pwps Unwinding After PAN
http://community.webshots.com/album/41140028pRvGQG
Shake Rattle & Roll Walk for PD 2002 pics
http://community.webshots.com/album/41150175sJozgy
Parky Mixer
http://community.webshots.com/album/41152123yvedeT
DC-1
http://community.webshots.com/album/41153412XULBXu
DC - 2
http://community.webshots.com/album/41154300ARPgyM
DC-3
http://community.webshots.com/album/41156121knwjdF
DC-4
http://community.webshots.com/album/41159463GkOAPM
Lake George (Americade Bike Rally)
http://community.webshots.com/album/41156691UpEJRd
Lake George pics (more)
http://community.webshots.com/album/41157553cjrgmz
Just Me, toadie
http://community.webshots.com/album/41159955XVPmCu
My Beasties (Dogs) & Yard
http://community.webshots.com/album/41160215BQlgpI
Retaining Wall
http://community.webshots.com/album/41161762jaHqfM
My parky art
http://community.webshots.com/album/41162555uJHSqQ
For My Brother
http://community.webshots.com/album/41572808yUNJFb
Wedding Pics I
http://community.webshots.com/album/43707373OlVVrs
Wedding Pics II
http://community.webshots.com/album/43790086txpuzR
Wedding Pics III
http://community.webshots.com/album/43794213zTtAVj
Wedding Pics IV
http://community.webshots.com/album/43811752vNatMf
July 02, 2002
Oooh Boy.
I'm supposed to be packed and ready to leave for South Carolina at 8:00 am (my
(Marine) nephew is getting married on July 8.) My oldest brother has 3 boys or
I really should say young men, one is in the National Gaurd,one is in the Army
and the yougest went into the Marines. The Army nephew just got married a
couple of weeks ago.
I have my clothes in wash baskets in the living room to sort out and pare down
the clothes to what I'll really wear. I"m planning to visit a friend on the way
home, I'm really looking forward to seeing her again. I just hope we don't get
into too much mischief.lol
So if you don't hear from me for a while, I don't think we're getting tattoos,
but I guess we will have to wait and see.lol
Take care,
toadie
June 28, 2002
I finally remembered the word I was looking for. Bradyphrenia - my mind is slow
as dirt grows. I really shouldn't attempt humor/fun in my sleep, it doesn't come
across well. acccck
June 26, 2002
I suppose one of the things that I take for granted when I write in here is that
I talk about doing a lot of stuff, the stuff that I do is often in a different
time frame than the rest of the world. I do things at a different pace, kind of
like bursts of when I feel good or up to doing stuff. Mostly a little at a time,
so I end up with 5-6 projects going on at once, sometimes it's because I have a
short attention span, and sometimes I start things as a tangent to something
else.
A project may start out by going to get the mail, and then finding a box to put
it in for Johnny to sort out his stuff, later. That's how I ended up refinishing
a little chest that I bought for 4 bucks. It was an ugly greenish black, I
sanded it, stripped the icky color off, now it's a lighter oak color with new
hinges and a lion's head for a opening handle. But, I didn't mention that I've
been working on the thing for 2-3 months and just got it finished the day before
yesterday.lol
I can do some physical things easier than the mental things. On off days or
particularly fuzzy days, I tend to do things that I'm familiar with, that I
don't have to think about. Like hanging wash or cleaning and such. It takes me
hours to sit down to balance the check book. Mostly because I do some of it,
have to stop and do something else, and then it takes me a while to regain my
train of thought.
The rather simple math has become mental aerobics, and is hard for me to get a
grip on. I did geometric and trig calculations everyday at work, but the last
year I worked, the formulas sifted away like sand. Eventually it was like I had
never seen them before. It is like that now. I have days when I feel mentally
clear, sharp and focused. I suppose that has been one of the more difficult
things for me to deal with.
I think that the motor fluctuations are more difficult for Johnny and the kids
to understand. I think it's hard for even other pwps to understand. Everyone is
effected so differently and most people forget that I'm 37, with over 11 years
of pd behind me and I feel like I'm probably in my 60's in some ways.
It's not just the physical symptoms but the lack of clarity, a hitch in the
thought processes, slowness, rigidity like a stiffness of the brain, maybe? The
Doctor can't tell me for sure if it's due to the progression of the disease,
side effects of the chemical cocktails I ingest to function, sleep deprivation
or depression but he says he thinks it's a combination. Well, that's a safe
answer,lol.
A lot of people have told me that depression causes the same symptoms and they
are all correct from what I've read and researched. Depression also causes sleep
disturbances. If anyone has a sleep disturbance, it's me.lol But, it's one that
I've had all of my life, I think the pd or meds just magnify it. My Mother says
I stopped sleeping at night when I was about 18 months old, and that I never
really slept much even before that. And sleep deprivation causes depression.
This is how most of my projects start, lol. I start doing or talking about one
thing and go off on completely different tangent. I wish I could learn to focus
on a regular basis, instead of short bursts. Sometimes I feel like I'm simple
minded. I used to be clear, sharp, focused or "smart" (on a regular basis), now
I carry around a card that says I'm not drunk, I just have PD.
I'm just sorting through some stuff because Johnny and I ran into some trouble
with motor fluctations. I can't predict reactions, when or what food will
interefere with my meds. I'm also undergoing the slow and steady increase in
Mirapex. (acck I learned last time that too much too fast causes head spins) He
has a hard time with some of this stuff, watching, you know. I don't mean to
whine or complain, just sorting laundry, so to speak.
June 26, 2002
I suppose one of the things that I take for granted when I write in here is that
I talk about doing a lot of stuff, the stuff that I do is often in a different
time frame than the rest of the world. I do things at a different pace, kind of
like bursts of when I feel good or up to doing stuff. Mostly a little at a time,
so I end up with 5-6 projects going on at once, sometimes it's because I have a
short attention span, and sometimes I start things as a tangent to something
else.
A project may start out by going to get the mail, and then finding a box to put
it in for Johnny to sort out his stuff, later. That's how I ended up refinishing
a little chest that I bought for 4 bucks. It was an ugly greenish black, I
sanded it, stripped the icky color off, now it's a lighter oak color with new
hinges and a lion's head for a opening handle. But, I didn't mention that I've
been working on the thing for 2-3 months and just got it finished the day before
yesterday.lol
I can do some physical things easier than the mental things. On off days or
particularly fuzzy days, I tend to do things that I'm familiar with, that I
don't have to think about. Like hanging wash or cleaning and such. It takes me
hours to sit down to balance the check book. Mostly because I do some of it,
have to stop and do something else, and then it takes me a while to regain my
train of thought.
The rather simple math has become mental aerobics, and is hard for me to get a
grip on. I did geometric and trig calculations everyday at work, but the last
year I worked, the formulas sifted away like sand. Eventually it was like I had
never seen them before. It is like that now. I have days when I feel mentally
clear, sharp and focused. I suppose that has been one of the more difficult
things for me to deal with.
I think that the motor fluctuations are more difficult for Johnny and the kids
to understand. I think it's hard for even other pwps to understand. Everyone is
effected so differently and most people forget that I'm 37, with over 11 years
of pd behind me and I feel like I'm probably in my 60's in some ways.
It's not just the physical symptoms but the lack of clarity, a hitch in the
thought processes, slowness, rigidity like a stiffness of the brain, maybe? The
Doctor can't tell me for sure if it's due to the progression of the disease,
side effects of the chemical cocktails I ingest to function, sleep deprivation
or depression but he says he thinks it's a combination. Well, that's a safe
answer,lol.
A lot of people have told me that depression causes the same symptoms and they
are all correct from what I've read and researched. Depression also causes sleep
disturbances. If anyone has a sleep disturbance, it's me.lol But, it's one that
I've had all of my life, I think the pd or meds just magnify it. My Mother says
I stopped sleeping at night when I was about 18 months old, and that I never
really slept much even before that. And sleep deprivation causes depression.
This is how most of my projects start, lol. I start doing or talking about one
thing and go off on completely different tangent. I wish I could learn to focus
on a regular basis, instead of short bursts. Sometimes I feel like I'm simple
minded. I used to be clear, sharp, focused or "smart" (on a regular basis), now
I carry around a card that says I'm not drunk, I just have PD.
I'm just sorting through some stuff because Johnny and I ran into some trouble
with motor fluctations. I can't predict reactions, when or what food will
interefere with my meds. I'm also undergoing the slow and steady increase in
Mirapex. (acck I learned last time that too much too fast causes head spins) He
has a hard time with some of this stuff, watching, you know. I don't mean to
whine or complain, just sorting laundry, so to speak.
June 25, 2002
ooops
June 25, 2002
Oh my, it's 3:15 am, again.
I'm up wandering through the house. I've been spackling, sanding, peeling wall
paper, spray painting some little projects,painting some with acryllics,
washing clothes, hanging them on the clothes line to dry, listening to the kids
bicker, listening to Johnny bellow at the bickerers (or bickeringers?lol) and
it's not even noon yet. acccck
At any rate, my nephew ,Michael, got married on Friday, (June 14). He made the
appointment with the Justice of Peace, told his brother Jason that he was
getting married on Friday at 2:00 pm. And you know what he did? Then asked his
intended if she wanted to get married.
(If I had found out all that, about Johnny, I proabably would have told him no.
Just because,lol and hope he would ask again later,) The wedding ceremony was
simple and the kids were very happy. We had a cook out for them afterwards.
My nephew that is in the Marines is getting married (in a Church Ceremony) on
July 6 in South Carolina with 75 people in the wedding. I've had to scour the
stores for months now, trying to find something that doesn't make me look too
tacky or cheesey, too old and frumpy, or like somebody pushing 40 trying to look
20 something.
With the Saleslady's help, I found 3 really nice dreses. None of them are black.
One is a cream colored, a bright coral pinky colored and the last is a brilliant
green with bright blue flowers, they are all a simple dress design. (They used
to call it an A-line style, I believe.)
Now I have to find shoes. acck.
Today was so hot outside that I left the doors and windows out of the Jeep,
unfortunately, it was dark when I had to drive home It seemed like forever. The
only thing that I had to wear was the dress-bag to keep my legs warm. It rattled
but it kept my legs warm enough on me. Chris kept laughing at me, wearing my
dress bag as a skirt
June 25, 2002
Oh my, it's 3:15 am, again.
I'm up wandering through the house. I've been spackling, sanding, peeling wall
paper, spray painting some little projects,painting some with acryllics,
washing clothes, hanging them on the clothes line to dry, listening to the kids
bicker, listening to Johnny bellow at the bickerers (or bickeringers?lol) and
it's not even noon yet. acccck
At any rate, my nephew ,Michael, got married on Friday, (June 14). He made the
appointment with the Justice of Peace, told his brother Jason that he was
getting married on Friday at 2:00 pm. And you know what he did? Then asked his
intended if she wanted to get married.
(If I had found out all that, about Johnny, I proabably would have told him no.
Just because,lol and hope he would ask again later,) The wedding ceremony was
simple and the kids were very happy. We had a cook out for them afterwards.
My nephew that is in the Marines is getting married (in a Church Ceremony) on
July 6 in South Carolina with 75 people in the wedding. I've had to scour the
stores for months now, trying to find something that doesn't make me look too
tacky or cheesey, too old and frumpy, or like somebody pushing 40 trying to look
20 something.
With the Saleslady's help, I found 3 really nice dreses. None of them are black.
One is a cream colored, a bright coral pinky colored and the last is a brilliant
green with bright blue flowers, they are all a simple dress design. (They used
to call it an A-line style, I believe.)
Now I have to find shoes. acck.
Today was so hot outside that I left the doors and windows out of the Jeep,
unfortunately, it was dark when I had to drive home It seemed like forever. The
only thing that I had to wear was the dress-bag to keep my legs warm. It rattled
but it kept my legs warm enough on me. Chris kept laughing at me, wearing my
dress bag as a skirt
June 20, 2002
Hello?
Is there anybody out there?
June 19, 2002
Hi,
I'm going to copy/paste this here for anyone who would like to see some parky
pics. I've protected the pages with pwp pics so it's not for the general public.
However, if you are uncomfortable with your image on the web, please drop me an
e-mail (toadie) toadtales@hotmail.com and I'll remove it at your request, no
questions asked. I'm rather gaurded about my own privacy and would not want to
disrespect anyone's privacy.
If you have a few minutes, please Check out these photo albums I uploaded to
Webshots!
Pwps Unwinding After PAN
http://cards.webshots.com/cp-27782393-WrAY-album/41140028pRvGQG
Shake Rattle & Roll Walk for PD 2002 pics
http://cards.webshots.com/cp-27782393-WrAY-album/41150175sJozgy
Parky Mixer
http://cards.webshots.com/cp-27782393-WrAY-album/41152123yvedeT
Just Me, toadie
http://cards.webshots.com/cp-27782393-WrAY-album/41159955XVPmCu
parky art
http://cards.webshots.com/cp-27782393-WrAY-album/41162555uJHSqQ
hehehe,
let me know what you think?
love,
tammy (toadie)
June 15, 2002
I haven't been doing any writing lately, I haven't had much interest or when I
re-read what I wrote, it sounds stilted, self-concious or more like a school
report to me. I haven't been reading anything. No attention span. I type a
sentence or two of this and get up to do something else. Fidgity.
I've been painting,(doing some artsy-fartsy stuff)working on some small wood
working projects. Refinishing a little chest that I bought. It was this awful
greenish,doo-doo brown mix. To me, it was the color of brackish water. I sanded
it, stripped the doo-doo stain color and stained it with a golden oak finish. I
bought nice new decorative (yet functional) hinges but forgot where I put them.
So I have that little chore to do.
I've been working on some projects around the house. I took all of the stuff on
the shelves, moved the pantry cupboard and fridge out of the kitchen and put it
all in the dining room. I took all the stuff off the bathroom walls, so that I
can have the walls free to spackle, sand, paint with primer and wall paper or
paint. I haven't decided which rooms I'll paint or wall paper, yet.
I'm cheap. (Or should I say, I have to be frugal on our budget.) I haunt the
clearance racks, everywhere. I have paint and paper because I hit the clearance
rack at the local wall/floor covering store and found some really good deals.
Over 2-3 trips to the store, I found these bundles of wall paper. (1 bundle has
7 rolls, 1 bundle has 5 rolls (27 inch length), and 1 has 4 rolls, along with 2
single rolls, for about 30 bucks. I bought adhesive instead of relying on the
wall paper's self goo. I picked easy to match or no match pattern paper after my
experience with the complicated pattern and demon possessed wall paper. (The
ornate and intricate pattern paper that I had thought was so beautiful, slid off
the walls, stuck to me, or something it wasn't supposed to. I said a lot of bad
words that day.)
On another note, this is a conversation that I overheard from the kids the other
day.
Christopher came up from his room and asked Jennifer,
"What happened to the dining room?"
(It was neat and clean just a few minutes ago)
Jennifer simply replied "Mom."
Christopher said "Oh, ok."
They have become used to my odd ways of starting something and (eventually)
finishing it, but on my own parky schedule. Yes. Im talking a little about
nothing and eventually I'll get to the point.
I'm going to have to go back to the Doctor. There's nothing wrong with my Dr, he
is very nice. I just hate going to the Dr. I always wait until I'm absolutely
miserable or to sick to stand, to go. (This stubborn aversion is how I got
pneumononia about 6 years ago. When I finally went to the Dr (Johnny made me go
and took me up there), my lungs were at less than 20% lung capacity. I was the
walking dead. I ended up in the hospital for 2 weeks.)
At any rate, I'm miserable with the protien interferences. Everything
intereferes. It's more limits. I've tried all the protien tips and hints. But,
now but high protein foods like turkey, chicken, fish, mushrooms are like poison
to me. They interfere with meds and cause dyskinesias straight from hell. It's
gradually gotten worse, so now when I eat, I go "Off". To say that I don't look
forward to changing meds, adding them or increasing them would be a slight
understatement, but it's a necessary "evil".
I really wish this shit would just go away, but it isn't so I'll just keep on
rolling with the punches. I feel like I'm landing a few of my own punches,
whenever I do have a good day and can ride my bike, or sneak something that I
like to eat without going "Off".
June 07, 2002
The Road Trip
We officially started out at 8:00 p.m. Friday (5/24). Chris and I are both night
owls, so we talked and played CDs through out most of the night. I hadn’t taken
into consideration that I just can’t drive the long hours that I used to. I only
drive about 2 hours by myself, usually. I would drive for 2-4 hours and then
have to stop for an hour to move around and get Christopher something to eat.
He’s perpetually hungry. And I have to stretch and pee all the time.
I was expecting the trip to be in the neighborhood of 12-14 hours. When I
reached Toledo, Ohio at about 9:30 am eastern time, I called Joan’s house and
spoke to her wonderful husband, Stan, and after he patiently listened to me,
babbling on for several minutes, I asked him to let her know I was on the way. I
had planned to surprise her and just show up at the College in Peoria, where the
Symposium was to be held. But, the surprise was on me. lol I felt like I had
been driving forever and hadn’t gotten there or anywhere, yet.
As we journeyed out, we kept studying the map and I kept notes of towns to look
for to assure us that we were going in the right direction. However, the road
direction signs would list some odd destination like Des Moines (Iowa) instead
of the sign for Joliet (the one that we scoured road signs for.) I completely
missed the exchange from 80/90 to 80 and ended up taking the Grand tour of
Chicago at rush hour.
The traffic had slowed to a virtual stand still, door handle to door handle and
bumper to bumper. If there was a space large enough for a V.W. bug to fit in
between my car and the car in front of me, an 18-wheeler would try to squeeze
in. I kept telling Christopher “I can’t believe this. I’m not supposed to be
here. I think I’m going to die.” followed by what Chris described as a
ritualistic sounding chant.
The traffic was either at a stagnant pace or whizzing past, because after I got
over the initial shock, fear and intimidation, I tried to just go with the flow
of traffic, I sat in the slow lane with cars whipping past me as though I was
sitting still. The whole time Christopher is both boggled by the map and
directions on the road signs and horrified at sheer volume of traffic.
After taking several exits to roads that said they were going towards Joliet,
(instead of continuing on our current course northbound to Detroit, I wanted to
go somewhere at least south bound). But, it was fruitless, we were to never see
another direction sign of that road again on that exit. We finally stopped at a
gas station. I had about a quarter of a tank of gas, but I didn’t know when or
where the next gas station would be. I had to get gas and directions, so I chose
the one that had the cheapest gas prices of the three stations located on an
extremely busy intersection. 1.89 for medium unleaded.
I’m a die hard bumpkin. I’ve survived or driven through some of the worse
weather conditions, I lived in South Alabama for 10 years and I won’t talk about
having to stop on a main highway on the way to work, for an alligator to cross
the road. accck lol
I am sure folks who choose to live in big cities and have become used to all of
the traffic and city life, would be just as frightened as I was, if they were
removed from their city element and dropped into our slow rural life style.
Although our wildlife randomly pops up unexpectedly and makes noises. It’s
generally more afraid of people.
We eventually found our hotel in Chillicothe around 7:00 pm and called Joan
Snyder. Nanny came over to get us. I was so happy to see Nanny that I forgot to
do anything to my hair and didn’t tie my shoes. She has brightened many days
with the song of hope in her heart. Joan was so wonderful to see. She has a
warm and generous heart. She opened her arms and home to me and Christopher. We
felt warm and welcomed by her family. Chris and Joan’s son seemed to hit it
right off. I felt like I was home.
I appologized for missing most of the events on Saturday. I was a mess but I had
made it.
Toad, Nanny, Christopher and I walked together for the pd walk. I felt special
to share such a bright, beautiful warm day with so many wonderful people. I just
can’t say enough good things about Joan, her Mom, Ali, Mitch, Stan and Holly
Angus (a pretty lady who works her hiney off. Joan says so)
I could go on and on. But, I’ll let you read Jes’ story.
The drive back was almost uneventful. Except when I woke Christopher up at 4:50
am, by yelling because an 18 wheeler had come out of a merge lane and traveled
across 3 lanes to get to the outer lane. The lane that I was in. I stepped on
the gas to get past the tractor trailer's blind spot, or I would have been
flattened by the broad side of the truck against the concrete lane barriers.
It was a good trip, long, tiring but, I was able to spend all weekend with my 16
son. And share some time with some fine folks.
June 06, 2002
Prologue
Johnny and I had planned to go to Chillicothe on Memorial Day week-end. We had
planned to take both of the kids as a family event. But, my daughter had to work
on Saturday (5/25) and was the Drum Majorette in a parade on Monday, so Johnny
was going to stay home to keep an eye on her. So Christopher and I packed up
the Jeep to head for Chillicothe. Joan’s Shake, Rattle and Roll event.
It wasn’t quite that simple. On (5/23) I had an appointment to get a new starter
put on my Jeep because the bendix was going out. Of course, they didn’t have
one in stock and had to order one. It wouldn’t be in until (5/29). They assured
me that the starter wasn’t that bad yet, and I wouldn’t get stuck or stranded
anywhere between here and Illionois. I told them that if I did get stranded,
they were going to hear about it because I would be very unhappy.
Then Christopher had a DR’s appointment for a rather nasty ingrown toenail on
hisbig toe. They were going to remove the nail, but he pleaded with them to post-
pone it so that he could make the trip with me. So the Dr. gave him some more
anti-biotic and special instructions. Johnny takes Chris tomorrow (6/7) to have
the out patient surgery (toe nail removal) done. I think I can do any other body
part but feet. I suppose it’s because my feet have become so sensitive and the
Mamma thing. I couldn’t watch that and know how much pain it would cause my
little boy. (even if he’s 16 years old, 6’-5” and 275 pounds.)
Well we got all packed up and left the house about 4pm. The computer program
that had generated the directions also listed a driving time of 13 1/2 hours. I
thought I had plenty of time to get to Chillicothe before the 9:30 am Symposium
started. I stopped about 25 miles from our home, in Watertown to get gas. I went
by the Mall to feed Christopher. Christopher had a major sandal blow-out, so I
had to look for size 15 sandals. He needed the sandals because they allow his
bad toe to remain free from the pressure of a shoe’s toebox and restriction of
socks.
They aren’t easy to find, so I had to do some leg work. We happened upon a pair
in his size, and at a reasonable price, after we had already been through almost
all of the other stores with any shoes. I was getting so down, that I was afraid
I was going to have to get him some shower shoes or flip-flops that his feet
would inevitably hang over the sides or nds off. At least until I could find
something better. But I was glad that didn’t happen.
While Christopher ate his supper in the Jeep, I had to go potty. I told him
which store I was going to and left the keys, my supper, the cell phone, and
purse with him. I had my wallet in my jacket pocket. At any rate, I had a parky
lapse of time. I had gone potty and then decided at the last minute, to look for
some sandals for myself. (I have gangly eighth grade boy’s feet so I’m a little
self-conscious of exposing my toes to the public. Especially my right foot (my
ugly foot) with it’s rigid, dystonic monkey toes.) I found two pair, a brown
pair and a red pair. (a buy one get one 1/2 off sale) I had left Christopher to
eat his dinner and was gone for a total of 30 minutes.
I went back out to the Jeep expecting to see an impatient Christopher, ready to
hit the road. But, instead I was locked out, with no keys and my purse, cell
phone and supper sitting on the front seat in plain view. So I unzipped the side
window and climbed in and over the seats. I was unlocking and opening the
passenger door when Christopher came up. The sudden huge presence at the door,
when there hadn’t been anyone around just moments earlier, scared the shit out
of me and I yelled, Christopher yelled back in surprise. He didn’t know who was
breaking into our Jeep and was going to slam the door on the perpetrator’s head
until he saw that it was just me.
I had been seated comfortably before the mall security came by to visit me. Just
curious looks as to why I would break into my car.
Christopher didn’t know how long I had been gone, he doesn’t have a good sense
of time either. So he went to the store I said I was going to, looked around,
and couldn’t find me. (I was trying on shoes on the bench at the end of the shoe
display racks, so he probably didn’t see me.) At any rate, he went out to the
mall and had he paged. He found out later that you can’t hear the mall page in
the stores, you can only hear the page if you are in the mall hallways or
between the stores.
Bless his heart, Christopher panicked. He thought that I had frozen some where
or that someone had tried to mug me for the trip money that I was carrying. So
Christopher didn’t know what else to do, so he called his Dad at home, about
5minutes before I came back to the Jeep. Needless to say, Johnny was very upset
and worried because we had left the house some 2 hours ago. Johnny raced to the
mall not knowing what in the world was going on and where I was.
I had to wait to leave (or have the trip officially get underway) an extra 30-45
minutes for Johnny to arrive, so that he would know we were OK. I was sure he
was going to tell me that the trip was off because I was flaky. But, I explained
what had happened. That we had stopped to feed Christopher and find a pair of
size 15 sandals (which is where the two hours was spent or went) He was so
relieved. He just told Chris to page me at the store next time or to stay with
me. So poor Christopher stuck to me like a burr the whole rest of the trip.
June 06, 2002
These last few weeks have just blown right past me. I was going to take
yesterday off to breathe, but, you know me. That didn’t work out. lol
I guess I’ll start with the PAN forum. Johnny and I traveled the 8 or so hour
drive down to Washington, DC, the scenery and company was very nice. We chatted
most of the way with some companionable moments of silence. Johnny’s not much of
a talker, unless you get him started on bikes or sports. lol
It was really nice to meet old friends, new friends and put faces with handles
or nicknames from the forums. I was really surprised at how many people I knew
or should say recognized their names or writings from the forums. I wasn’t sure
what to expect, so I was a little apprehensive. I was afraid that it would be a
little stuffy as far as dressing up and such. But, it was a comfortable
atmosphere or environment, most everyone was very real, warm and kind.
The PAN classes were very informative. There were many presentations, Doctors
from all over the world talking about their studies and the newest treatments,
successes and some failures. It was all at a fast pace, so I was a little
overwhelmed with trying to learn and absorb so much at one time. I think I tend
to be a little driven to “get it all” at times. There was so much to learn, see,
observe, and do. But, pd tends to get in the way. It seems like pd symptoms
flair at times when you would rather be concentrating on doing something else.
Food and drinks were present through out the day, so I would eat lunch or a
piece of pie, only to go “off” and do one of three things, tremor, become slow
and stiff as a taxidermy project or start waving with dyskinesia from the
protein interference. My right hand kind of pulls up by my right shoulder and
twists, so I look like I’m waving, while my right foot does this Mr. Ed kind of
stomp. (A lady waved at me, as she passed our table, she must have thought I was
waving to her. So I did my best “Hey how ya doin’?” hehehe
The legal assistants from the Senators’ offices were very helpful with tips on
writing or contacting your Senator. They said they did like form letters, and
would rather see your personal details or your story before a form letter. I was
surprised to hear that they thought hand-written letters carried more weight
than typed. (I suppose I would just mention that someone else is writing this
letter for me. My printing is so small that I could probably write a letter on
the back of a match book.) I just remember from school that all business letters
should be typed because it was neater and showed that you took the time to make
the extra effort to type it out. Things change.
At any rate. I went home exhausted, overloaded and a little sad to leave my new
friends and old friends behind. The PAN Forum was important to me for several
reasons. I hear a clock ticking in my head, I don’t know how long I will be able
to do some of this stuff, but I feel a need to start something, do something,
make some noise. I didn’t know how long I would be able to work, ride my Harley
or anything else, so I’ll just start small and work up. Just do the best that I
can.
On a personal note, I really enjoyed getting to know and spend time with Patti
Hager, her husband Ron, Carol and Carl Mc Cloud, Chosh, Nan, Brenda, Jaye, YPD
(Mike) Peggy, Emily, Sunshine, Paula (I missed you) Greg and AJ. I hope I didn’t
forget anyone, so please forgive me for my memory. I enjoyed getting to meet
Paul (River Sticks), Carolyn (from Florida), Indigogo, Tom Berdine, Marcy, Sue
(Bee and her sister), Barbara Davidson, and so many others. I really do
appologize if I missed your name, there were so many people. So many Dedicated,
hard working folks, just doing what they felt was needed.
Tenacity is a very pretty and impressive lady to meet in person, to me, I was in
awe (or awe-struck) by her, much in the same way when I first met Joan Snyder,
I was star struck. I could barely speak an intelligent thought. I must have
seemed more simple-minded than I already am.
This may not seem like much, but it was a big step for me. I did a speech for my
son’s English class. I passed out oven mitts and asked them to write their names
or try to use a pen. I used a giggle ball that shakes to give them an idea of
what tremors are like. I got permission from the Principal and took my 3 month
supply of meds in. When the kids saw how much medicine I have to take to “look
this good”, they started asking questions. Questions like ”Isn’t there something
better?”
My son says the kids still ask about me, and have kept the notes that I passed
out to them about PD. He said they were all quiet, listening, and they still
remember parts of my speech. He says they don’t do that for just anyone. lol If
I can get a teen-ager to stop long enough to listen, you would think I could get
an adult to. I want to make a lot of people listen, not just to me, but the
voice of the PD community as a whole. I want to make people listen before my
murky voice is taken away or silenced by the progression of this damned disease.
There are times that I wish I had my loud and clear “pig calling” voice of many
moons ago. lol
June 05, 2002
I have been off-line due to a veritible flood of too much stuff to do. I am
taking the time to breathe today. But, as soon as the flurry of activities slow
down to a dull roar, I will try to post all my PAN thoughts and other assorted
tales from the road, on the way to Shake, Rattle and Roll.
May 18, 2002
Well it's 1:00 am. I'm supposed to be packed or getting ready for the PAN forum.
It's about 8 hours driving or so from here. We leave here around 4 or so this
morning.
I'm a little apprehensive because I really don't know what to expect, but I'll
live. I'm trying to step outside of my normal level of shyness. It's hard but I
hear a clock ticking time is running out, not just for me, but for many others.
I feel a need to do something. It's like watching this disease as it unleashes
itself without prejudice and feed it's own relentless pursuits from an unwary
host.
I'm also worried about trying to cram information in my head and having it ooze
out when I'm not paying attention. gotta finish packing, now. I hope to see some
familiar faces.
May 17, 2002
Befuddled
I was the chunky girl that the other kids loved to tease in middle school
(6,7,8th grades). You probably went to school with the same kids that I did.
My parents had a woodstove that was their sole source of heat. We used about 100
cords of wood a year. The trees were carefully selected by my Dad and came from
my parents woods. My Mom and Dad were unable to do a lot of the physical work so
by ninth grade, most of my summer vacations were spent loading, unloading,
piling, stacking, splitting a good portion of the 100 cords of wood. I was
fortunate that my Dad had built a hydraulic wood splitter, so I only had the
kindling to split by hand.
This was before it was fashionable for women to have healthy muscles. The kids
picked on me for having such wide shoulders and big muscles. However, my new
strength was born of long hours of working and I had aquired a toughness from
working with the wood, learning to overlook injuries like smashing fingers,
blood blisters, slivers, turned ankles and such. I also developed a short
tolerance level to crap, and the kids left me alone, and stopped picking on me.
I also learned a little about people. Sometimes when the other kids cut you
down, it's because they were feeling bad (scared or unsure) about being
themselves and you just happened along to catch a potshot. Gradually, I became a
little more social.
I ran into a lady that I went to high school with, some 20 years ago.
The first thing she said was "Miss Piggy!"
"Is that really you?"
I had to bite my tounge as a rather caustic and unpleasant reply would have
flown from my mouth, wrecklessly. This thinking before I speak, is a new concept
for me. I'm not sure I can always do it.
I told her that no one has called me that in years. I sensed she was in need of
some type of attention. I set aside my baggage and listened to her pour her
life's stories of the last 20 years.
I saw her in the grocery store the other day. I said a "hey, how are you doin?"
She turned towards me, gave me dirty looks and walked away. I ain't got a clue
what her problem is. I didn't pee in her cornflakes, as far as I know.
Some things and people never change.
May 16, 2002
I forgot to mention that I went completely off my rocker.
I traded in my sensible 6 cylinder Buick for a Silver Jeep Wrangler. It's loud
inside, has a lot of road noise, and rides like a truck. I absolutely love it.
The kids are still secretly wondering where my common sense has gone to. If you
happen to see some stray common sense wondering around (with the rest of my
mind), please send it back. (Johnny approved of it, so he's just as bad,lol)
May 16, 2002
I had a wonderful Mother's Day. The kids took me (and Johnny) out to dinner and
let me pick out a present. I have a new 1/3 sheet sander so I can work on some
of my larger projects like a cabinet and drywall. I love it. They paid for
everything by themselves. It makes it more special to me because they used their
own hard earned money.
May 16, 2002
I'm still trying to catch up,lol
May 16, 2002
Let me see, where did I leave off?
Oh, last Sunday (5/5) we took Christopher out on the road for a short motorcycle
ride. A beautiful sunshiney day, with low winds and the temperature was in the
low 50's. Chris wore his Dad's big Harley coat for protection from the wind and
such. He had such a good time and did really well riding his tall Honda (450cc).
He said he has to get better at his "take offs", so he can keep up with me. But,
his Dad told him, he was doing fine. Sometimes, Johnny has a hard time keeping
up with me.
We were almost home when I got a cold chill and about a minute later, my left
leg started to tremor. We were close to a small park, so I pulled over and let
Johnny know I couldn't finish the ride. I asked him if he could take Chris home
and bring back the car, then he could ride my bike home. The car is an
automatic, so I can drive short distances, and still get home safely as long as
I'm not "too off".
Needless to say he brought the truck back, backed it up and parked it against a
small hill. He rode my bike up and around the park, down a small incline and
onto the ramps leading into the back of his truck, to load my bike on the back.
We got into the truck to leave, of course, the truck wouldn't start. The battery
was dead. He fussed with the truck for a while to no avail. Johnny was very
unhappy as he didn't have his jumper cables with him, was forced to unload the
bike,and having to leave me at the park while I continued to go more "off".
Unloading a 500 pound motorcycle uphill in the grass was quite an adventure. I
wasn't able to help much as I watched Johhny as he tried to wrestle the top
heavy beastie to back up and out of the truck's bed. It was a quieta show of
sheer strength and determination. After several minutes, grunts, groans and bad
words, he finally got the bike out. He pulled the bike back as far as he could
while I wrestled with picking up the tailgate, so he could edge the front wheel
around to steer the bike out and around the back of the truck bed. He rode
my "little" Sporty home, and came back with the car and jumper cables for the
truck.
Meantime, the mosquitos, black flies, gnats and other assorted critters were
swarming around my head and face, apparently trying to enter any and all
orifices, they could find. I finally succumbed to sitting in the stuffy truck
while I waited for Johnny to come back. I was worried that a policeman might
happen onto the a "But, Officer, it's really not what it looks like" scene.
Picture me without any keys, sweating to death, wearing all my leathers,
waiting, and napping in a dead truck that is parked against a side hill (in a T
position - with the truck's front wheels on the black top with the rest of the
truck on the shoulder of the road).
Johnny came back and after 2 tries finally got the truck's battery to run long
enough to get it home, where it promptly died again. When I got home, my right
side was shot. No arm swing on the right side. My right leg and foot were
dragging, causing deep scratches on the top of my right boot, on the way up the
concrete porch steps. The kids helped me get my boots off, then helped me peal
off all the layers of bike clothes.
I have learned to listen to that particular kind of cold chill as my body's
warning that I'm going to go very "off". I also learned how much the effects of
very little to no sleep magnifies pd symptoms. I have to remember that the
things that didn't bother me last year or the year before, have changed as my pd
continues to progress. I never ride unless I'm very "On", and have learned to
listen to my body's warnings, so I'm not in denial, I know that I will
be "voluntarily" forced (by pd) to give up my bike, somewhere in the near
future. It sucks, but, there it is.
May 08, 2002
Another Chapter in Time
Oh my, where do I start? Somewhere near the beginning, I suppose.
There has been so much going on in the last few weeks. Last week, (5/1-5/3)
Johnny attended an AutoCad class for work down in Syracuse, about 90 miles south
of where we live. So, I ran away from home and stayed with him while he went to
his classes. The idea was for me to hang out and take a break from the house,
kids,dogs, you know, the whole nine yards.
On May 1, I wasn’t too sure about this idea, of just hanging out at the (Big)
Mall while Johnny went to his classes. I was on day 3 without sleep. Johnny
drove down and then he went to his classes. I drove myself over to the (Big)
Mall. (I keep saying big mall because they are going to expand it and when they
are finished, it is supposed to be bigger than the Mall of America.)
The mall wasn’t open yet, so I waited out in the car and cleaned up the empty
Mountain Dew and Pepsi bottles and such that my kids leave me as presents. At any
rate, I was begining to doubt that this was such a good idea. My people skills
are somewhat lacking when I’m so sleep deprived. I eventually wandered into the
bookstore. I wandered around trying to find my way in the store’s layout, I had
wanted to pick up the Michael J. Fox book. Greg said that there was a lot of
swearing in it, so I just had to get it. lol
I waited patiently as the lady at the desk answered the phone. She was very
dramatic in appearance, wearing some black sleeveless lace thing, shiny black
pointed shoes, black slacks, and black satin opera gloves. Her hair was a flat
black hair color, that looks more like she patiently colored it with a black
magic marker. Her pallor was very light, almost a pasty white, so her choices of
black eye make-up and deep red lipstick appeared slightly unflattering on her
rather delicate and refined features. Smothered beneath all that spackle was the
appearance of a beautiful lady with sparkling brown eyes.
At any rate, a nice and rather knowledgeable guy came over to help me. He went
through the company’s computer, found a list of all the PD books that they had,
and located them all on the stacks for me. I ordered the “Eat Well, Stay Well”
(the pd diet book). I have long ago given up trying to find pd books at any of
the local bookstores, even the larger chains don’t have any pd books dated
remotely close to this century. Up here everything has to be special ordered and
then they usually tack such a high shipping fee on the item, that you could have
driven there to get it yourself.
I gathered all the books that they had there and went to the bookstore’s cafe,
settled into drinking a very large mocha expresso and read. I haven’t sat and
read anything in years. Generally, I don’t have the attention span. But, it was
quiet and peaceful in my own little world. I read “Saving Milly” for a while and
then read 25 pages of the MJF book. I stayed there reading until 1:00 or so in
the afternoon. I also explored their CD department and found some good CDs. It
was really nice not to have to be anywhere, or be anything to anyone for a
while, just cruising the mall.
My Dad was in the Merchant Marines, I am the youngest of 5 kids who all went in
the Service, I was in the military 4 years, my husband retired after 20 years of
Service and I have 2 kids in Public School. I have a different level of
tolerance to cursing, so it doesn’t really bother me. I should say that the only
time it really bothered me was when I was reading a Johanna Lindsey book and the
leading man (the underdog) kept saying the f- word, when it was out of place in
time and context to the story.
Normally I would read the old historical romance novels or the horror genre, as
an escape from reality. I had read most of the “required” reading books from High
School in middle school and spent many frozen winter days and nights reading
whatever I could get my hands on, even sneaking any and all of my older sister’s
Shakespeare books. That’s why I didn’t read anything heavy or of great literary
importance. I had been a voracious reader, pouring through huge books within
hours or days. But, that was one book that I just put the book down. I was
irritated that I had spent money on it when it could have been better spent
elsewhere.
Oops, sorry I went off on a tangent. Let me see, where was I? Oh, I had to pick
up Johnny and then we went to the Dinosaur. A biker bar/b-b-q restaurant. The
food is always good, the beer is always cold and the service is excellent had my
customary beef brisket sandwich plate with beans and fries. I didn’t eat the
bread and didn’t get the “Mr.Ed thing” (a kind of right foot stomp) dyskinesia
that I usually get from protein interference. But, I did have to get my
Chocolate Icebox pie to eat later,because I was way too full. lol
Although, during the week the restaurant is usually full of college kids and
yuppies. I only have problems with the shallow ones, they are sometimes mean
without intending to be, they just believe all the outlaw biker stereotypes.
When we are just regular people that happen to ride motorcycles. I mean the rude
ones who stare at me or how I dress like I’m less or not good enough. The kind
of men that call me a “biker bitch” under their breathe because they are afraid
to say it louder, or women who tell their dates that they could be a biker
chick, thinking that being a biker is all about the clothes. I hate it when
ladies pull their little children back and act like I’m going to eat them. But,
I think that stupid people are a universal problem.
I actually slept really well and got back up on Thursday (5/2) feeling well
rested and ready to tackle the mall again. I farted around at the mall until it
was time to pick up Johnny. I tried on a bra thing at Victoria’s Secret. I
didn’t get it. It was the right size, but not a good style for me. Apparently
you have to have surgically enhanced or anti-gravity boobs to wear it because
the underwires came across the middle part of my old lady boobs, no matter how
much I adjusted the straps or hung upside down to try to get the thing to fit.
It just wouldn’t fit. lol
We went to eat at a steak house that was very good. There was a lady, with a
mosquito like voice, that had been sitting behind us, when she noticed my Bengal
tiger tattoo. She said “Oh my God! Oh my God! She has a tiger on her back!!!”
I nearly fell out of my booth chair laughing, it seemed like she had said it so
loud because I didn’t know I had this big tiger tattoo on my back. I suppose
someone could sneak up on me and put it there, without me knowing about it. lol
We had a fire alarm go off that night at the hotel. It scared the be-geebers out
of me. It turned out to be a false alarm, which was good. However, all the fire
trucks, police and such made quite a racket. I eventually unwound and went to
sleep around midnight, an early bedtime for me.
Friday, (5/3) Johnny only had classes in the morning until 11:00 am. I stayed at
the hotel instead of venturing out, as I was afraid to spend any more money. I
had bought 5 pd books, 4 cds and actually found a pair of high-top women’s
sneakers that I can wear despite my right foot with it rigid dystonic monkey
toes. I packed up our stuff and waited for Johnny. Drinking coffee and reading.
Ahhhhh, that was nice.
We went home. The kids had cleaned the house, and it was nice. Jennifer had been
pretty busy with school, and she started a new job at an office supply business.
Christopher had actually done his schoolwork.
The time away from all of it was really good. Johnny and I had spent a lot of
time talking to each other about anything and everything. Johnny said he enjoyed
having me all to himself because I pour so much love, affection and attention on
him. I really liked not having to compete with the t.v., kids, or dogs for
attention, too. I was able to cut down on my smoking a lot while we were gone. I
only smoked 3 on Wednesday (5/1), 2 on Thursday (5/2) and blew it all when we
got home on Friday night. Johnny had taken Christopher to a bullhead supper that
they were having from his old job. I picked Jenni up from work and took her to
the mall and Wal-mart, so that she could get some last minute things for her
prom. The stress of everyday life had returned with a vengence.
Saturday morning,(5/4) I droped Jennifer off to work at her new job, and drove
Christopher up to the Farmer’s co-op to try on the new boots that we had to
special order for him. Size 14 logger boots, boots generally run truer to size
than the sneakers that he wears a size 15 in. The boots fit him well and he was
so happy, until he had to pay for them, lol. Christopher passed his tests for
both of his driving permits, car and motorcycle. He has been practicing riding
his bike out behind our barn, every chance he can. He loves it. He’s 6’-5” sock
footed, the logger boots add a couple of inches to his height so he stands about
6’7”. When he rides on the road with us he wears Johnnys’ big leather Harley
jacket, Christopher looks so huge. It’s hard to believe he is only 16, soon to
be 17 in June.
I’ve let him drive the car, I took him over to a closed store’s empty parking
lot and let him practice driving the car. He has to put the driver’s seat back
as far as it will go, and tilt the seat back to have clearance room for his
head. lol We used the parking space lines as road lanes and he drove around and
around just getting the feel of the car, stopping, turning and using his turn
signals. My car is really light on the gas and steering, so he had to learn to
adjust his large hands and feet. We are still practicing easing on and off the
gas and brakes. lol
Jennifer had her Senior Prom, Saturday night (the prom was a lock-in). Her date
was a boy named Dustin. He is 19, has a job, his own truck and is 6’-6” tall
with a medium build, his nick name is “Ogre”, but he’s not as heavy muscled and
bone-built as Chris. He came over early to meet us and looked very sharp in his
tux with a pewter gray tie. He’s a very nice kid, polite, shy, and he was very
nervous. I took their pictures and had to get him laughing about stuff so he
would be a little more at ease.
Jennifer’s best friend, Marie, came over with her “date”, Pat. Marie had to pay
for her own prom ticket, meal and was supposed to drive him to the prom and all.
But, they decided to all ride together with Jennifer and Dusty. Marie is a very
pretty and sweet girl, she’s very responsible and one of the best influences on
Jennifer, that I’ve ever seen. Marie is like one of our kids. I met Pat. I
didn’t know him from Adam’s house cat, but for some reason had an instant
dislike for him. I took some more pictures of the girls and then the couples
together.
Jennifer loked beautiful, she had done her hair, by herself, in this kind of
upsweet do with little curly ringlets and a light touchof make-up, wearing a
long sparkley purpley gown and her silvery heels. She loves to wear heels, but
usually the guys are shorter than she is, even with flats. Her height isn’t a
problem with Dusty. They made such a pretty couple. They both had a very good
time. As it turned out, Pat ditched Marie to go with his friends, so Marie
stayed with Jennifer and Dusty most of the time. Jennifer told their friends
that Marie had ditched Pat, because Marie was feeling so hurt. Christopher was
very unhappy about Pat, he is a little sweet on Marie and very protective of her.
chapter 2 will follow as soon as I can get it writtten,lol
April 27, 2002
Well, I put in an application for a scholarship to the PAN forum. I sent in the
registration page and made reservations at the hotel, hopefully everything got
in within time. It's a big step for me, I'm not all that good with crowds so
hopefully I'll be able to keep my composure and not embarrass myself too bad.
Somehow I have that feeling like standing at the edge of a dock. It's really hot
outside. The water feels warm, but you know the water is fed from a deep
underground spring. Should you ease into the icey water and get used to it or
just jump in?
If you're like me, cold water makes my tremors worse, I start shaking enough to
compete with an outboard evinrude. Sometimes, I just jump in anyway.
At any rate, I'm going to try this.
It finally stopped snowing here late yesterday afternoon. Maybe spring is really
on it's way, maybe winter is just threatening to hang around.
I've been doing some painting, art and crafts stuff, it's calming. Except when
Weeney starts barking, then I feel like the cat in the cartoon. Hanging upside
down from the ceiling while Weeney keeps barking.lol
April 24, 2002
Today is starting out as quite beautiful. The sun is bright in the brilliant
azure sky. Quite a contrast to waking up to snow on Monday (4/22), we had a
couple of inches of snow accumulation but it melted yesterday, (YES! Hopefully
spring is here,lol).
I've been thinking about how I used to be very responsible, over-responsible so
at times. Lots of obligations, reliable, punctual, I had heavy work load and
intense focus on career. At least, I wasn't a ladder-climber, stepping on others
to get where I wanted. I was just a work-aholic and whenever Johnny or the kids
would ask me if I had to work so many hours, my reply was "you like to eat,
don't you?" (I cringe to remember it now)
I'm not sure if people really understand what I mean when I say "I worked my ass
off to get where I am today." (retired on disability at 37)
At any rate, I'm going to attempt to do the bills for a while. Johnny has a full
plate right now, so it will be a stretch for me. I did the bills and finance
stuff until Johnny retired from the service in '95. At that time I was working
12 hours 4 days, 10 hours on Friday and 6-8 hours on Saturdays. (I did that for
a little over 3 years). I had become overwhelmed with too many obligations and
had over-extended myself to a breaking point. Something had to go, so I pawned
the bills and groceries off onto Johnny. He was going to college in drafting
school, then.
At first, he was waiting for me to go to the grocery store on Saturday after I
got off from work. I finally told him that if he could manage a multi-million
dollar pharmacy budget for the last 8 years of his military career, a hundred
dollar a week grocery budget shouldn't be too awful. I settled in to just going
to work and making money. I was good at it( making money). I liked it that way.
I didn't have to worry about bills and when they were due and such. If we needed
extra money, I worked more.
Things are different now. I've had to learn how to adjust to going from our
combined work incomes, to my disability income and Johnny's income. My SSDI came
out to be about 1/3 (32.4%) of what I made in a month. My long term disability
insurance has turned out to be a saving grace, to keep feeding those ever-hungry
children of mine. I'm not complaining, just trying to give a little clarity.
I've become very impulsive, "idle shopping" Johnny calls it. I used to go to
stores or spend hours at the mall and buy a cup of coffee or not spend anything.
I have time now, so I buy things for the house. You know, fat handled gadgets
for the kitchen and curtains. I've accumulated a few tools for doing minor
repairs or small projects, a tremor dominant parky with an E-zacto knife can be
scary.lol
I found out what a bad mix credit cards and impulse buying, along with
forgetting what, where and how much I spent. Sometimes buying two of
something.I'm still paying off my Christmas learning experience. I volunteered
to give up the credit card. It wasn't an extavegant spending but enough to be a
painful learning experience and a wake up call to my new reality. I can't go
back to work and make more money. While I was working (outside the house) we
always used cash for Christmas presents. We did the best we could with what we
had and that was that. We are going back to that.
I don't know how anyone can live and eat, sole dependent upon SSDI, even if you
don't have kids. How can you just support yourself? What about meds? coffee?
My parents did it, but I have no idea of how they managed to cope with 5 kids at
home and going down to 1/3 of Dad's income. Mom didn't work at a paying job. She
did plenty of work, though. We had a small farm, Mom was taking care of the farm
work, feeding cows, horses, kids, and such.
Since we didn't have much money, we invented our own games. They made some of
our more unpleasant chores fun, until we got caught. Like cleaning the barn. The
cows stalls. We threw cow manure at each other with pitch forks. In the winter
throwing frozen cow poop that would smack with a thud. In the summer, dried cow
manure exploded in a poof of poop dust. My brothers always seemed to enjoy
hitting me in the head with clumps of poop.
We all were hoping that you didn't get hit in the face or with an oozy one,
because it was nasty and Mom would get pissed at the dirty clothes. We called
horse manure road apples. Once in a while, I could throw a "good" one like a
soft ball and I could smack my big brothers in the back of the head. This is how
I got to be very good at dodge ball.
Ahhhh, the good ole days.lol
April 23, 2002
I know. I shouldn't be posting to this in the middle of the night, as I end up
prattling on for a while about something that only makes sense to me, by the
way, it's 2:45 a.m. here. From my last couple of posts I've learned not to post
when my hormones are raging. I end up saying "come on menopause!" perhaps it's
not funny to some folks, but I'm hoping that my meds will work once in a while,
after the hormone monster goes away.
This past week has been a series of struggles. Christopher took his written exam
for his drivers licence and motorcycle permit, and passed them both. He's 6'-5",
now They made him squat to take his pic and when he sits in the driver's seat of
the car, I swear the boy has to lay down and sit in the backseat. Jennifer is
back home after spending the week at her Uncle's
My eyes are starting to get that jitter, and my head is trying to smack on the
keyboard, so ill close for now.
April 18, 2002
My meds don't usually work well enough for me to do any high functioning
activities, until late in the afternoon. I don't eat during the day, hoping that
my meds will eventually kick in.
I reckon I'll have to go back to the drs, to see what else there may be on the
shelf for me. Anything high in protein (or anything related to food) intereferes
with my meds. High protein like chicken, portabella mushrooms, cause dyskinesias
from hell. I now have a fear of food. I could ride a mechanical bull on it's
highest rodeo setting and probably take a nap.
I've been able to ride my bike for short distances of about 20 miles one way
before pd creeps in and I have to wait for the next dose of meds.
My meds never kicked in today, so I couldn't ride my Harley, again. I've gone
from 7000 miles my first year, 2200 miles last year, and now I can ride about 20
miles or so at a time. I suppose it's better than a sharp stick in the eye. I
hate this disease for all that it interferes with, right now. I suppose I sound
like an angry child stomping my foot and pouting.
I know I shouldn't be so selfish and complain. But, it just sucks really bad.
Yes, I know think of the good things. I can wear size 4 and 6 now.
April 13, 2002
oh my, i can't find the words to let you know how much your replies have touched
me, made me think and gave me the heart to come back here (standing up
straight). thank you for taking time out of your day to help me get back up. i
appreciate the hand up. will talk some more later when i can find some proper
reply, i hope a sincere and heartfelt thank you will due for a start.
April 11, 2002
i'm still forgetting things.
i have a need for some advice. i'm not sure if i'm just self-concious but i
think i tend to make people uncomfortable. even other pwps. i don't think it's
the harley stuff or tatoos. i think it's that way with pwps because i'm often
their mirror image of their past (as in post dbs) or a future that has yet to
come.
a little leather has made me calloused to rude public remarks to my ocassional
displays physical symptoms. bouts of rigidity, tremors,(the drunk walk combo)
and dyskinesias from eating protien.
i've run out of stuff to talk about. i suppose that's why i've been away so
long, i've had pd for 11 years at 37 and am on ssdi. is that scary or what?
as to my mental fuzzies that few seem to understand, i've heard "well, duh..",
one too many times, and it instantly pisses me off.
April 11, 2002
johnny had a "routine" physical, his cholesteral is up, so we are doing the low
& no fat thing. mmmmm mmmm veggies. (the closest i get to fruit is pop tarts.
lol) i seem to be able to eat junk like jelly beans and gummy bears, but real
food continues to interfere with my meds. we are waiting for some test results
on johnny.
i'm trying to quit smoking, again. it seems like it would be easier to be turned
loose from a dance with the devil. i smoked for 14 years, quit 5 years and
picked it up again 2 years ago. boy, was i stupid for dabbling.
johnny despises it. his dad died from emphasema. i was with johnny and his
family, while his dad was in the hospital. his father had times when he no
longer recognized or knew johnny. i'll leave it at that.
his next dr appointment is on may 6, he would rather wait until then to get the
test results. if you ignore it, it will go away... or if you don't say it
outloud, then it isn't real.
March 12, 2002
Ahhhh, I'm back, the fog has lifted...
Years ago, I used to be pretty handy with the sewing machine. Although my
husband was very gifted with a stapler and duct tape when he was a bachelor.
I made a lot of the kids clothes, simple dresses for Jennifer with a dab of
extra lace and ribbons, like Jenni’s long favored ballet skirt, a fru-fru
concoction with an elastic waist and frothy thin fabric with tiny pink rose
buds. Don’t tell anyone she used to love to wear pink,lol
This was back in the day when button holes were a bane to me. But, I made
our curtains, slip covers for furniture, bed ruffles, shams, I even squeaked out
a few quilts. I made my brother, Dave, a quilt from denim and Harley
bandanas for his birthday in June. It took me most of a year to finish because
the fabrics were so thick that much of the time I ended up hand sewing with
the use of pliers, until I could afford another 2-3 sets of leather needles for
my sewing machine. The quilt was so heavy that my brother only used it in the
winter when it was well below zero outside. lol
I had learned to master the sewing machine bobbins that had become
tempermental on my aging sewing machine. I still had a love for using my
Dad’s old Singer treddal.
I stare in awe at the modern computerized sewing machines, with a host of
models to choose from. I liken it to the dumbness I feel when I look at the
multiple shelves of hair coloring products. I don’t know anything about all
that stuff, it’s too confusing, so I buy the same highlighter frosting kit that
I’ve been using for years. It works, to blend my gray hair from streaks to
“highlights” but my gray hair is now in stripes, and is taking over.
At any rate, I have learned of a marvelous thing called fusion tape when I
hemmed my winter thermal backed drapes using it. You have to be cautious
with the backing, so it doesn’t melt.
I’ve been having some good days and a few rough ones, mostly because I
overdo it on the good days. It seems that I exist in a different time zone than
the rest of the family. They pop out of bed at 5:00 a.m. while I’m usually on
my way to bed. I start moving in the late afternoon and keep going while they
run down at 9:30 or 10:00 p.m. However, even though I haven’t been
sleeping at night, I still don’t have time to do everything I would like to or
want to accomplish. So I try to make the best of it and remember what my
Dad used to say; ”You can eat a big old bear, all by yourself ; one bite at a
time.”
I’ve actually started to slow down, instead of spakling at night when I can’t
sleep, I actually read a magzine article. Yes it was on Harleys,lol I also have
started to watch movies at night. I haven’t been able to sit thru an entire
movie in a long time. I usually get up and start doing something else while the
previews are on. Sometimes, I sit in here and listen to a movie on the t.v. in
the living room. An old habit of listening for the kids. But, I think I will make
an attempt at reading a book (nothing of literary import, without motorcycles
or pictures).
Our area was struck hard recently by a fire that burned nine buildings on one
block, in town. The local departmant store reently closed, causing more hardship
to the victims families trying to find rides 25-30 one way trip trying to
replace their lost items.
March 08, 2002
Your Eyes
Your eyes tell me the little things.
The ones you can’t put into words.
Thoughts, that are hard to share.
Feelings, emotions, the things you can not say.
Sparkling with mirth, mischief,
Dancing with merriment.
Frolicking and flirting with new love.
Aye, they have even smoldered with ire.
I have seen the pride of a new father.
The warm glow of tenderness, passion and desire.
They’ve darkened with pain and the sorrow of grief.
The comfort of passing shared secrets in a glance.
Your eyes promise a lasting love.
Ever present, strong, and enduring.
Despite the fickleness of life’s challenges.
A love tinged with time, patience and understanding.
Your eyes have shown me what is in your heart.
They have told me what is hard for you to say.
My face and voice can’t always convey what I feel.
Just look into my eyes, my Love.
for Johnny ~^~
March 06, 2002
Well I think I’m done with my “oh my gosh, will you look at what all these
drugs will do?“ It’s good to know the signs and symptom warnings, so I can step
back when I need to re-group, re-evaluate, or take a break.
I used to have over 60 pairs of shoes, a pack rat at heart, I would buy shoes
then find out at some later point in time, that my right foot hated them. Now,
I can try on a pair and within 10 minutes or less, I know whether I’ll be able
to wear them or not. Some shoes seem to cause what I call “instant” dystonia.
While my big toe points upward, the last three toes on my right foot will curl
under my foot and into a knot. This is my signal that my monkey toes will not
tolerate that shoe, at all. I can’t wear backless shoes because they will
inevitably fly off as I’m walking. The kids like to tease me about throwing a
shoe (like an old horse.) hehehe
I’ve always had problems with dystonia in my face, jaws, neck, back, legs and
feet. I’ve developed something new, the knots of dystonia are starting to run
amok on my forehead and face. You can physically feel the knots below the skin
on my forehead or knots around the joints of my jaws. The tightness can make a
mild headache become one of the migraine type, where I have to have it dark and
quiet. I sometimes joke about it being like something out of “The Exorcist“. I
have to wait for meds to kick in and sometimes use a heating pad to try to
relax the muscles. I’ve never been one to nap, however, I found out that a nap
with a heating pad on my forehead is good for the face charley horses. Acck.
If you notice that the meds effect you certain ways, they may effect others in
a like fashion. Maybe you know someone, who won’t forgive a bad childhood much
less an un-intentional slight. I like to find some sense of peace, I try to
make amends. I’ve gotten too old, in some ways. I think you make apologies and
go on. Learning to forgive ourselves as easily as we forgive others is a step
towards growing and healing, in more than one way. I prefer to think of it as
allowing someone the freedom to be themselves without judging them too harshly
and continue trying to see them in a kind light. does this make sense to anyone
besides me?
March 05, 2002
I am grateful to the people who have held my hand on a dark or scary night,
helped me up and dusted me off, or brought me back to the land of the living.
I'm also grateful to the many journalers who have been very supportive.
Especially to Johnny, who has helped me and stood by me (and I don't know how
he does it.) Thank you.
March 05, 2002
Last week with raging hormones, it wasn’t a good time to stop taking effexor.
Of course, being a hard head, I did it anyway, after a slow downward titration,
over the last couple of weeks. Today, I’m starting to feel more like myself and
better. Perhaps, I should wait until I've rested to post this long ramble
but....
I’ve been doing some thinking. I can hear it now, ohhhhh nooooo; I wish she
would stop doing that. At any rate, I was thinking about how different
everybody handles Pd and meds. I hope this will make some kind of sense, even
though I ramble off on (a few) tangents.
Recently, I told someone I had Pd. I honestly expected them to walk away. When
they acted like, “what difference should that make?” I was shocked in a way,
back to another perspective. A few years ago I felt the same way.
It seems like I’ve become used to people walking away or a similar kind of
response, you know, like when you were dating and a guy says he‘ll call you.
Why should Pd matter?
I’m still me, just a little different. Well, a lot different now.
I don’t think I’m an avid fan of discourse, havoc or just plain being mean.
I’ve probably isolated myself more than bringing chaos to others. I’ve always
been the apologetic, trying to keep peace, always worrying about bringing
someone else down.
I’ve lost contact with a lot of people; some of it was my own doing. Some is
just due to the progression and more demands that are placed upon me. Some of
it was mutual, some losses were due to the fact that they also have pd.
Sometimes it’s like people remember you as you were the last time they saw you.
Their Pd has progressed, but they forget that yours may have, too. Kind of like
when I see people I grew up with and I remember them as 16 or 17, only now they
are pushing 40, like me.
Sometimes, there becomes a separation.
It seems like there are some things, only “old timers“ and the care partners
know and understand. As time drums on, I’ve noticed that there are some aspects
of Pd that can’t be explained very well to someone else. But, I don’t live
with other pwps. (But, how do I start a local support group, when I can’t
balance the checkbook? Years of daily trig calculations have just sifted away.
I start a bunch of projects and may eventually finish them, even if it takes me
months.) I don’t think I try to fool myself as passing myself off as a “normal”
but, I try to live and function as best that I can despite pd. Perhaps to spite
pd in some cases. Although I’ve never had one, I think it must be like I waking
up with a perpetual Pd “coyote date”.
About 3 or 4 years ago, I could go for days, weeks, sometimes a month or more
without feeling that I had Pd, (that bad). My meds worked well, in relatively
low doses, I worked. Unfortunately as I continued to hammer out the hours that
turned into months and years of work, my meds increased, and eventually became
high doses at shorter and shorter periods of time.
Instead of slowing down, I kept on.
Eventually I had to take twice the amount of Sinemet that I do now. It was
becoming less and less effective, developing end of dose failures, dystonia,
and dyskinesias from hell.
Along with such high doses of Sinemet come the personality changes, taking
things the wrong way, (as personal criticism), hypersensitivity, easily
agitated, crying at nothing and pissed off at nothing, sleep deprivation (I
mean going 68 hours without any sleep while working full time), depression, did
I mention paranoia, on and on it goes. It’s so scary to feel your life
careening out of control. But, control can be an illusion, sometimes.
I lost a lot of friends, pushing people away, mostly through neglect. Driving
them away at times with my selfish foul temper, not considering what they might
be going through. I had thought that I wanted to be left in alone in peace to
lick my wounds. I no longer could handle the world and anything it slung at me.
I had a narrow focus on work, feeding kids, but mostly a false pride that
nearly killed me. I was like a wounded Grizzly.
For that I am truly sorry and regret if hurt their feelings in any way.
I didn’t expect any of them to come back, nor should I. There are the very few
who knew, cared or understood, what was me being a butt hole, when it was me
pissed off at pd and not at them, and what was way too much Sinemet. Despite
some of my (fuzzy) attempts to get attention, I felt ignored, quite often. A
few will never forgive me, perhaps that’s as it should be.
Anger had been my defense mechanism for years; it kept me from crying from the
physical pains of Pd and the scars Pd has left on my psyche. Anger warded off
the despairs. But, I’ve had to learn to channel the anger and focus on
something positive. It was a negative and draining force on me. I started
painting landscapes, and got into arts and crafts. It calms me.
After I stopped working, I disappeared from the forums for months, except to
look up more useless web sites. I didn’t want to be around anyone at all
really. I didn’t feel that I could talk to anyone. I was lost and trying to
find my way. There weren’t any quick fixes for me, but to be patient, adjust to
a new and different med load. But, I also felt like I was being forced into
another major life decision because of pd. (More choices being yanked away.)
I was looking into DBS. I haven’t been officially ruled out, however, with my
family history of strokes, (they may find a cure for pd but there is no cure
for a stroke.) My allergies to meds like aspirin, codeine, keflex,
erythromycin, penicillin, tetracycline, I feel that I have to be realistic and
can’t pin all of my hopes on DBS. No, I haven’t talked myself out of it before
I try, I just have to give what some of the drs say a little credit for a
change. I suppose it’s like expecting the worse so I can’t be disappointed if I
am officially ruled out.
Through all this rambling, I’ve just realized I‘ve been to hell and back in the
last year or two. I don’t think I’ve written it all down quite like this
before. I don’t want to be misunderstood; I’m not making excuses for myself or
using Pd as an excuse for bad behavior. I think I’m just sorting out all this
stuff, more as a warning to prevent others from going through all these things.
I don’t think others need to have a Pd crisis, to slow down.
February 27, 2002
Thank you Carol.
I had to let you know that I found out this afternoon that I had been approved
for SSDI. My long term disability company sent me a letter stating that they
had been notified that I had been awarded SSDI benefits. I also have 2 weeks to
repay overpayments.
I checked online and have to send for a letter of verification? Social Security
didn't leave me a note, card, nasty-gram or answer machine message, to
say "aye, no, maybe so, kiss my foot" or anything. They just put the money in
the bank. Direct deposit. 7 weeks, altogether. From Jan 2, from my disability
interview appointment to the direct deposit on the Feb. 20. (that I just found
out about today)
I can breathe again. I've been so wound up in knots, worried, waiting,
wondering, when is the other shoe going to drop. how much more paperwork?
ackkkk... Maybe I'll get a dragon tatoo,now.lol not sure where I'll put it tho.
I'll figure it out when or if I get there.lol
February 27, 2002
This will probably be my last entry for a while. I need to take a break from
the cyber world. Been having lots of protein interferences, can't eat a thing
without it interefering, I even wrote a letter to "ask the dietician". She was
very kind and patient with her replies, it's on the Feb 24 "A. T. D." digest if
you are interested. It’s gotten pretty hard, so I haven’t written anyone in
ages, seldom talk on the phone anymore, and it’s just time to let go for a
while. So take care, rest well and in comfort.
February 20, 2002
I'm learning a lot about patience. As I read the other journals, I feel a
little odd. It seems that my pd is progressing at a strong gallop, my mind is
as slow as my body. I have to concentrate on staying focused, it's hard to
remember things, I'm not at all clear as I once was.
I don't know what is from pd, meds, or sleep deprivation or depression or all
of the the above. I've been sleeping every 2 maybe 3 days. Mostly when I'm so
exhausted that I crash. But, my family (my kids mostly) get frustrated with me
at times because I don't remember talking about something like a school
function or mostly my daughter's concerts.
We have a big calender on the wall by the phone (where Jennifer lives) where
all appointments and the kids activities are supposed to be jotted down. When
they don't put a note up there about something, then spring a meeting or
something on me, they get irritated with me because "we talked about it 2 weeks
ago." acccccccckkkk
Anyway, I saw a clip on the CBS news last night about Alzheimer's patients and
caregivers. One lady must have been extremely burnt out, emotionally exhausted,
drained and spent. Her husband was 55 when he was diagnosed, and 6 years later,
she appeared to be somewhat callosed and unkind about her husband. She said
that he was her husband but wasn't, he isn't the same man any more, she said
she felt like a widow.
I stared at the tv, aghast. I couldn't believe what she was saying with her
husband within earshot and on national tv. I asked Johnny rather bluntly if he
felt that way about me. Even sometimes? He looked at me and picked his jaw off
the floor, he too, was shocked at the woman's remarks. He said, "NO, I can't
believe someone would speak in public about their spouse or feel that way. I
know it must be hard for her and she is probably very tired, maybe that's
what's wrong."
To me it was scary.
At any rate, the kids are out of school this week and today I have to go to
town with Christopher to try to find him some jeans with a 36 inseam. He has
had a growth spurt, he's 6'-5" now. (and he's not done growing yet.)
Jennifer is volunteering as an aide at the daycare where my sister-in-law
works. We tease her about all the boys calling. There's a list on the phone
message board of boys with names like Moose, Josh, Orien (O Ryan), Andy, and a
list too long to name. I wish there were more than a few polite ones. I always
remember the rude ones. They remember me and their manners after I remind them.
hehehe
No big and tall shops around here, closest ones are 90 miles away. So we will
just try the places that sell Levis for now, as long as they don't cost a
fortune.Well, we are off to the big city.hehehe
February 12, 2002
This month’s weather has started off with a vengeance. The temperature has been
below zero for a few days straight. It’s hard to get outside much.
The main SSDI office in Buffalo sent me an 18-page forms to fill out. It was
pretty similar to the SSDI application. I typed out my responses and Johnny
edited and Jennifer typed it all out. At any rate,it's all done and out of my
hair.
I had bought one of those unfinished plant stands with the intention of sanding
and painting the finish on myself. I plan to use it to display Johnny’s ever-
growing collection of Harley miniatures. At any rate, I was sanding one of the
shelves tonight when I happened to look down at my hands. Rough, dry and
calloused, covered in scars from cuts and burns (battle scars) from cooking.
With chipped or broken nails. Lol
In the not too distant past I received compliments for having such “pretty
hands“. My nails were long, all I did was smooth and round the edges. I didn’t
pay that much attention to them because the moment fussed with them, my nails
would break or chip.
After living and working the Deep South for over 10 years, I fell into that
thing from of never leaving the house without a full face of make-up and doing
your hair. My, my, things change so quickly. Lol
Now, I’m suffering from PMS, (Parked Motorcycle Syndrome. lol ) So, I donned my
favorite Harley tank top, with my “old lady or Grandma” black sweater, and my
best black jeans, Sunday (2/10). We went to the bike swap meet in Syracuse. We
took my nephew with us and most of the time I ended up walking between Jason
and Johnny. Lol
We went to the Dinosaur, (a biker b-b-q restaurant) and had some of the best
food this side of the Mason Dixon. Jason and I had a chocolate ice box pie that
was out of this world. Hehehe My sister gave me their cook book for Christmas
so I think I’ll tackle the pie recipe first.
Today, I sorted through my collection of paperback books and will take them up
to my Mom to sift through. She’s an avid reader and will share the books with
anyone who wants one.
I’ve been doing the usual house stuff, a little arts and crafts like painting
and such. I’ll close for now and talk some more later.
February 03, 2002
I really shouldn't post stories when I haven't slept in two days. All of my
emotions become magnified. I have to step back sometimes and separate emotions
from the truth about some situation.
At times I feel like no one is paying attention to me, or I feel like I'm all
alone. The truth is that people do care and are listening, and that I'm never
alone, at least not here or at home.
I'll try to write some more, later.
January 30, 2002
I feel like I'm searching for something, I'm not really sure what it is. I just
have this feeling that it is just out of reach. On the pd forum, there was a
couple of posts relating to suicide. It dredged up the darkness and despair
surrounding my brother-in-law's death by a self-inflicted gunshot to the head.
He left no comprehendable answers, everything was taken with him. There are no
answers. A long term solution to a temporary problem.
I'll admit I still get angry with him, for being so selfish. Perhaps I could
understand it better if he had a terminal illness, but he was physically
healthy. I can't understand, why or what made him leave this world and my
sister behind, to wallow in her own pain and anguish before she could get up
and start to live again, without him. The ghastly legacy he left behind to the
two innocent little girls. They will never know their Daddy's laugh, smile or
how he beamed about their birth. The girl's will never know their real Daddy in
this lifetime.
As I said, I believe he was selfish. He couldn't have thought of anything
besides his own pain. Perhaps, his pain overwhelmed him, as horrible as things
must have been to him. We never saw any signs.
Maybe that closure is what I'm looking for, I don't know. I don't think anyone
will ever really know: The whys? It's too late now. My sister is beginning to
pick up the pieces of her life and trying to move on. She was stuck in limbo,
for almost 5 years.
I talk too much sometimes. I should try to give this all over to the Lord and
let him worry or guide me.
Probably an overshare.
January 28, 2002
Well, it's 1:20 am, Poco Oso and I are eating chex mix and gummi-bears. We have
become very attached to each other. Poco seems to sense the difference in me
and seems to be more patient when I try to put her leash on and take her out.
She weighs over a hundred pounds, but doesn't drag me down the stairs and out
in the yard, like she does the kids.
She is a great pyrenese and chocolate lab mix, I've gotten used to how big she
is, but, my sister came to visit and commented that Poco was huge. It was like
I hadn't seen or noticed how large Poco really is. When she sits on the floor,
and I'm sitting in a chair, Poco is at eye level with me. When she stands up on
her hind legs, she is as tall as me or maybe even taller, and I'm 5'4".
When she wants attention from Johnny, Poco will get up on his lap, as though
she was a tea-cup poodle. When she's playing, she will put her head down and
roll on him. He says he must need a bath, because she's rolling on him like
they roll in dead stuff.lol
I had forgotten that Jenni might want to read this stuff. She and her brother
are very protective of me.
January 27, 2002
I had my appointments with the two SSDI appointed Drs. (The stress of these
appointments and filling out more paperwork, of course, my meds are worth a
poop, so my tremors are full blown- no voice, head bobs, jaws, both arms and
legs)
One was last Saturday (1/19) with a Doctor X, (I was taller than him and
outweighed him). He was pleasant and polite enough. I don't think he was a
neuro because he didn't do the usual neuro test stuff.
At any rate, he took a nickle out of his pocket and gave it to me. Then told me
to pass the nickle from my (bad tremor right) hand to the left tremor hand and
then asked me what it was.
"was it a quarter? dime?"
"No. It's a nickle."I said.
He said, "that's good. we are done now."
I told Johnny, well I hope that doesn't mean he thinks that I can make change
and go to work at Mickey D's.
I had an appointment with my regular Dr on 1/22. I still have pd. Doesn't that
suck? Upped my mirapex. He doubled the Effexor to 75 mg, he's trying to make me
sleep at night. At any rate I've been sleeping every 2 days. It's been pretty
cold here, -10 to -15 below zero, (which seems to magnify my pd).Poco my 2 year
old 100+ puppy and I have been grazing (eating food and junk) at night.
Then I had an appointemnt Friday, (1/25) with the Psychologist. That was
interesting. He was asking me idle questions, then commented about his back
pain at L-4 and L-5. Then asked me if I had any feelings of suicide? I told
him, no.
Then,he asks me to count from 100 backwards by 3's. I asked him if he meant
from 99 back, he said no 100. It took me a while to figure it out. Tells me to
remember 4 words, then asked me to repeat these numbers after him and goes
through a list of numbers. I did ok until he got to 5 digit numbers, he said
them so fast.
I just looked at him and said holy s***! oops,pardon me. Huh-What? Then he
asked me if I was feeling suicidal, did I want to commit suicide?
I said "just because I couldn't repeat the numbers you said? No."
He said that's not what I meant but that's ok.
It was strange.
Well I have to eat my supper, Christopher made lasagna. He has a talant for
cooking so we are building his recipe base. At 16, he's 6'-5" and 245 pounds,
at least he won't starve. I told him that, he needs to know how to cook. The
lasagna is really good, too. Bless her heart, my sister-in-law can burn water.
Today the temperature was up to 40 degrees (above zero:) I didn't even have to
wear a jacket. I would have gotten the bike out but I can't get thru the 4 feet
of snow on the sides of the garage where the snow slid off the roof.hehehe
January 22, 2002
Oh my, I don't know where to start. I don't really have much to talk about.
Maybe I'm talked out for a while. Yeah, I hear ya, that will be the day.
I'm sorting stuff out into piles, like mental wash. You know how it goes, some
days you are the pigeon and some days you are the statue.
January 19, 2002
accck it's 3:20 am, i really need to get a life. i'll let you know how my
appointment goes. i doubt they'll have anything new to say. sometimes, one dr
has tried to out-do the one before. maybe i don't have pd after all. maybe it's
just chicken pox or poison ivy, that you can put calamine lotion on and it goes
away eventually. or maybe a band aid. ah well....
January 15, 2002
Well, it has started. The Social Security Disability Dance - Limbo, Mamba,
Hokey Pokey or whatever you want to call it.
At any rate, I received an 18 page packet to fill out from THE BIG office in
Buffalo. It is pretty much the same as the original disability application.
They have a longer and more detailed or specific ADL section. And now they want
me to “Explain what exactly I do from the time I get up until I go to bed.” I
ain’t kidding that’s one of the questions. They ask if I have trouble getting
along with others. lol I think that's in the parky manual, too much sinemet,
dyskinesias, sleep deprivation, and so on, can make a Saint ill tempered.
Should I tell them I have a shirt that says "CAUTION does not play well with
others"
That list of what I do all day, should be fun, since I’ve gone back to sleeping
every other day or two.
The letters say that their office is responsible for making disability
determinations. So, it’s most likely that they will never see me. They will see
my file, a stack of paperwork that represents my medical and work history. The
process is already making me feel like a paper doll, created from type written
words on reports. Accccck.
The Office, also sent me two appointments with Specialists. One is scheduled
for Saturday? Jan 19, in reference to “a movement problem”, they will pay for
all the tests to include a “nerve examination”. I’m not exactly sure what that
is, but that’s what it says in all capital letters, here.
The other appointment is in reference to “my depression” and they will pay for
all tests including “mental examination” (all in caps).
Evaluations from assorted folks, I can‘t find on the AMA site, and the letters
don’t say what they are specialists in. I don’t know if I should study for
these tests, to have my head and nerves examined. lol i just gotta keep some
kind of a sense of humor about it...
January 13, 2002
too cool
thank you pwinkle,
:) toadie
January 13, 2002
test
1
2
?
