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Thursday, February 24, 2005
How does one imagine a molestation? I suppose if one was unsure of what
happened it may be turned into an imaginary scene. Whatever the case, I
know for a fact the molestation was not imagined. I am not into
being "fashionable".
I confronted my brother a couple of years ago about the incidences. Not to
validate their authenticity, but to hear his side. Try to find peace with
it somehow. He not only knew what I was talking about, he said he often
wondered if that is why I went "amok" in my teens.
I am sure that many have imagined such a thing, and I am just as equally
sure that I did not.
Sunday, January 23, 2005
I think 2005 is greeting me differently than years previous. I am calmer
in situations and I believe the wisdom I have earned is finally
benefitting me. There are no additions of medications, and no huge
humbling experience, (not more so than usual). I think this is contributed
to two things. God and age.
The way I am looking at things now, at least today...heehee, is from the
standpoint that I paid my dues in full, now I can sit back and see what it
is I paid for. As I think about it, I wonder if at times I have read way
too much into situations because I thought it necessary to do so. Man, is
that exhausting
I am tired. And this kind of tired brings me new life. I am letting go and
accepting.
Sunday, November 21, 2004
The first leg of my new journey into myself is a hard issue that I have
not had a head on face to face look at yet. I have talked about it for
years, even had counseling for it. But, I have not conquered it. I guess I
have felt that I have done ok without reopening that wound. However, for
some reason it is beginning to fester. There may be several reasons
contributing to the timing. Whatever the case.. it is time to cleanse this
part of me.
When I was 9 or 10 my older brother began to sexually abuse me. He would
sneak in my room at night while I was asleep, crawl in my bed, and begin
to do things that my naivety had no idea of. I knew it was not right
somehow. There was no showing of emotion between mom and dad.. just an
occasional kiss. And absolutely NO talk about sex. So, the actions of my
brother went on for quite awhile before my innocense gave way to wisdom
that I was gaining the hard way.
What was hard then, and is also hard now is the fact that it felt good. As
a child, I didnt understand it was "dirty". The physical sensations felt
good. Thats all I knew about it. When I entered Jr. High, I had no idea it
was the wrong thing to do. As I stated, there was never any talk about it
at home, so I assumed it was what you did with a boy you liked. I found
out through tough experience that it wasnt what you did with a boy you
wanted to like you.
Girls are still having difficulty. I met a 13 year old awhile ago that
became a prostitute and stripper in some underage pervert thing. I wrote
this poem for her.
The Puppet
She smiles with calculation
and forces a bright giggle
for the delight of those who named her.
Not knowing how to cry out loud
she covers her silent tears with make-up
and lives the life
of being their creation.
Brutal rumors follow her walk.
She holds her head high above snickers
while averting her eyes from pointing fingers.
She knows what they think
She knows....
but will not defend herself.
There are no fantacies of infatuation.
The reality of her world
has attached strings
that have woven into knots
and strangled her heart.
They smile and tug at her
while she goes along with the game.
Stuck in the self-destuctive continuum,
her youth is sacrificed for their desires.
Her return being a high
that she has paid dearly for.
Biting her painted lips
she pretends that they are more
than just an audience watching her perform.
She closes her eyes
and bobs for apples in braids
They watch her slowly remove her clothing.
She cannot remember when it turned into this.
The need for being cared for
has turned into something beyond her control.
She has become the puppet they play with
Dancing and twirling in their wind.
Her mind calls to her.
But the force of the wind is deafening.
Soon
the strings will weaken and break
She will fall
and be forced to learn
how to live.
©Laura Jeanne Dean
I have not seen her for many months now. I hope she is alright. I tried to
help her bring down her wall, but she wasnt ready.. not at that time
anyway. It just tears me up knowing that there are other girls going
through the same anguish that I went through. I want to reach out and
yell to them.. "YOU ARE NOT ALONE!" That is one of the worst things about
going through incest and it's aftermath. YOu feel SO alone. So very much
alone.
I did confront my brother a few years ago. He said he had always wondered
if that is what caused me to become so rebellious as a teen. He
acknowleged the act. He even acknowledged it was wrong. But, he did not
take responsibility for it. No sort of apology at all. What did end up
happening was he began to let out all of his emotions of how HE was
raised. This turned the whole course of our meeting from his abuse towards
me to the abuse HE had to deal with. It no longer was my feelings being
discussed. Again... I felt alone.
My brother and I are very sparce these days. I have become quite bitter.
And, that is not good at all. The strange thing is I have always, and
probably always will...defend him. My brother is so much the way my father
was that this surprises me. Ah well... God is working..
We're on the tip of the iceberg Anita. Are you ready for the tital wave
when it finally crashes into the sea?
Saturday, November 20, 2004
I am healing. This time I AM healing.
When you have a part of your body that hurts, it may take awhile to figure
out what is wrong. You may have to go from doctor to doctor, try different
meds, dial up, tune in and out, do cartwheels and dance under a carrot
wiggled above your reach before you finally are on the right track to what
is wrong.
I think I am done dancing.. My legs are tired and I want to heal.
Emotionally, and mentally. I found another councelor.. A woman. Big
difference. The other counselor was fantastic, but since he was a man, I
didnt really take his advice as being very sound. Great guy, probably a
great counselor. But not for me.
So...now I get to figure me out. I have partially. I am always looking for
more answers though. And I dont know why. It could be that all the residue
that is from my past has built up a sheen over my reality now. I know
somewhere beneath that residue is me. Somewhere...
There are subjects I have not tackled inwardly that must be opened up and
gone through with a fine tooth comb. Not just me talking about what has
happened... but, feeling.. FEELING what happened. I want to do this.
Indeed, I NEED to do this.
Tomorrow, I begin.
Tuesday, October 19, 2004
The blessings in life are hard earned, but so appreciated when they arrive.
I am beginning to realize that expectations hinder my development in many
areas. I cannot learn how to love, understand, forgive, witness, grieve,
or rejoice fully if stipulations have been planted in my mindset. There
cannot be boundaries on feelings. The bars I have hidden behind are ones I
have put up myself. No incident from the past built the foundation of my
jail. Nor has any present situation kept me inside of it looking out...
Its all in mindset... and outlook.
I am seeing what a trap ptsd can be. It is too easy to hide behind the
guise of its label instead of learning through its teachings. In many
ways... I have felt like I have been robbed, and desperately search for
justification. When none is found, the part stolen then requires
fullfilment of some kind. So it turns into a game of... the world owes me
bigtime... and I wont accept any less than ...........
After all, I survived.. now i need to pat myself on the back and make
others do so too..
How wrong... how misguided and wrong. How human.
God let me wander in this labyrinth for awhile. Each trail that ended up a
dead end humbled me. I began to develope conclusions and loose
expectations. I learned to look into things, not at things.
And when I finally did see... really see
God did reward me.
Monday, October 18, 2004
As the song says.... "what a long, strange trip it's been."
Major thinking, adapting, analyzing, soul-searching and just plain ol
contemplating life goin on here. I dont really know why... maybe it just
had to happen. I have decided it is easier to go with the flow of how my
brain decides to work rather than battle it. I cannot change what slides
through it, nor can I change the speed or direction of my impulsive
thoughts. What I can do is try to cope with the fact that it will not
change... and most importantly... there is nothing wrong with my thoughts
changing. It is me... it is ME
I used to be into astrology pretty heavy. Could tell a persons sign by
talking to them. But, it began to turn into stereotyping and I backed off.
However, some of the traits still stick in my mind. My birthday is May
23... gemini... not right in the middle but on taurus cusp.. oh yea...
stubborn as a bull for sure...Now add in the fact that my rising sign is
that of Leo... (had my chart done). ok. So, now you have someone who is
always changing their decision, is stubborn about the right to change the
decision, and is DAMN sure the new decision is the RIGHT one. At least
until something makes more sense.... then everything again gets changed
leaving people I know with jaws that are developing arthritis.
Add pd and pd med side effects... shake, and stand back. THe upcoming
explosion will doubtlessly leave some kind of message in its wake. And
usually it will require alot of brain power.
I have decided that there is an acceptance of self that does not require a
bunch of psycho mumbo jumbo. I dont need to read therapeutic phrasing, nor
do i need to write my thoughts down to process later. I dont need to write
or sing my feelings out, I dont need to throw things, I dont need to look
at past sufferings or accomplishments, I dont need to look in the mirror,
I dont need to learn yoga, astrology, or what society thinks I need to
learn.
All I need to do is close my eyes...
and relax
Thursday, June 17, 2004
Forgive me for not writing. I have been going through many things that
confuse me enough, I dont think it is fair to confuse those of you
reading. I am doing well.. and continue to find strength in my Lord.
Thursday, March 18, 2004
I had someone say something to me today about my poetry. Since my words
come from my soul, it really made me stop to think. I always knew my
poems were of dark matters. Things such as child abuse, teenage suicide,
and gangstahs arent exactly light. This person acknowleged this to me
today and asked me if I had any light poetry.
Know something? I dont.
I dont think I am being negative in my outlook, just realistic. But,
perhaps my realism is negative. Perhaps I have had too much heaped on my
plate. Perhaps it is time for a different perspective.
How does one pull of the dulldrums of the past when the present doesnt
seem much rosier? The future is not even considered, which also creates
a bitterness. I am trying very hard to keep a smile on my face, although
sometimes it feels like a mask.
God has blessed me with many things. One of them being friends who care.
I am very thankful for them and for Him. Sometimes, I dont think I would
be able to continue with out.
Ok...
So, how do I do this? Any ideas?
Monday, February 23, 2004
Do you ever reach a point where you get tired of trying to prove who you
are to people? Or get tired of explaining the reason behind things that
you have done in the past? Do you get sick of people deciding for you
that they know whats best? Do you feel like screaming just to be heard?
Good grief. Sometimes I think that there is an assumption that my brain
is fried more than it is.
I feel like moaning today, but if I moan around my family i am in their
minds having an attack of pd depression and wont listen seriously to why
I moan. If i ask them questions, I am having pd anxiety. If I speak my
mind loudly, I am having a menapause problem. If I do anything outside of
be quiet and sit in my room..they justify my emotions with some physical
ailment and toss them aside.
Sure... I know all about the emotional problems associated with pd and
menapause. But, I also think I am intellegent enough to be able to
distinguish the difference between having irrational thoughts and
thoughts that are soundly based. Give me a break...I am human even though
I have pd.
Thank God for my counselor...Thank God for you guys.. Thank God for my
self esteem... thank God for dignity and thank God for keeping me on
track with my life. When I begin to question my worlds craziness, I look
to Him and He assures me Im fine. Im His... and He makes sure of it.
Wednesday, February 11, 2004
I have given my life to God, and He is taking care of me. I feel as
though a lesson is about finished and He is making sure I have learned it
properly. I have come to the conclusion that since I am supposed to learn
through my mistakes, I am sitting at genius level.
My marriage is back on track. I am not going to question the past, nor am
I going to ponder the future of it. One day at a time. I am glad
actually. Marriages have become disposable and I give both my husband and
myself too much credit to fit our marriage into that catagory. Sure,
there are some major things that have happened.. but I feel that God can
and does work wonders. We have to have faith... and patience.
My counselor asked a question that made me think.... seriously. How do I
want to live the rest of my life? The dreamer inside of me had to make
way for the realist in my answer. The dreamer wants to live in peace
according to my standards. But, the realist knows that cant be so in a
marriage. There is also my husbands standards that must be considered. We
are both human... and we both need to learn acceptance and compromise.
Through understanding this.... we can gain peace.
I love him... and he loves me... we are learning each other. God is
showing us how to.
Wednesday, February 04, 2004
I have decided to quit thinking so much about other stuff and concentrate
on my music for awhile
Monday, January 26, 2004
I am seperated from my husband. Now, I am living with my mom. I dont know
what will happen... if there is a chance for restoration, or if there has
been too much water under the bridge for this marriage to survive
anything.
Need alot of quiet thinking time..
Thursday, January 08, 2004
My husband is seeing my counselor now. He went last night... even though
he was extremey tired having only a few hours of sleep the night before
due to being called out to work twice. He works for the city public
utility dept. as an electrician. In charge of all of the traffic signals
in our county. We had a huge snowstorm. and he is in high demand. But, he
still went to the counseling appt.
When he came home, he showed me he wants to work things out. Not in
words, but in actions. He cleaned the kitchen, made lunch for me for
today and came to bed holding me very tightly.
So, now what do I do?
I love him, but I am afraid.
Tuesday, January 06, 2004
I have a friend who has purchased a building right on the main street of
our little town. He is renting out rooms there and is letting me have one
FOR FREE>.. It is a quaint room. In an old brick building built over 100
years ago. Lots of charm. The window overlooks puget sound. There is a
community kitchen and bath.
Cameo is staying with my mom, but has to finish up highschool here. She
will be coming here 3 days a week. I discussed staying in the room with
me while she is here. She likes the idea. When she returns to moms, I
will be going with her.
Mom has a big house... and she is 78 years old. I am hoping that she will
allow me to move in permanently. She needs me as much as I need her right
now.
Monday, January 05, 2004
I believe in angels... yes, I do..
A couple of years ago, I went through one of the worst health things I
have ever gone through. Nearly as bad as the encephalitis... the thing
that was so bad about it all was that it did not have to happen. I was
misdiagnosed.
I had a super top notch neurologist... only took special and "unique"
patients of which I was one. He retired and I got handed over to another
so called top neuro. On my second visit there, she put me on amantidine.
My brain injury from the encephalitis makes me very prone to side effects
of meds. One side effect of amantadine is anxiety. And I got a huge dose
of it. So badly I was panting like a dog, and ended up in the er twice in
one week.
The second time there, the resident doc called my neuro to ask what was
going on. It was then that I heard words that everyone who has a neuro
disease wants to hear. After 17 years of being dxd I heard the words.. my
neuro said.."I dont think she has PD."
I went to see her that week and she informed me that in her opinion, I
had an anxiety disorder... not pd... I posted in the mgh forums this
whole time. To save typing I will copy and paste here my posts.
posted 11-27-2000
Alot has been goin on here--made another trip into the emergency room
last night. Severe dystonia accompanied by severe shaking and pain.
Cause??? amantadine! Yep, side effects of a pd drug..While there the er
doc informed me that not only amantadine can cause not only this type of
side effect along with seizues, but mirapex can as well. This guy was
extremely knowledgeable with pd and questioned my diagnosis. He went on
to tell me that alot of pd drugs actually have side effects that are
other pd symptoms.. Consulting my new neuro at the Evergreen Parkinson
Center, he passed her words along to me--"WE DONT REALLY KNOW WHAT SHE
HAS!" After 17 years of being told I have pdism, of being put on so many
different drugs to find that right combination, it may end up that they
have been trying to treat side effects of the drugs they had me on that
were disguising the real problem. WE DONT REALLY KNOW WHAT SHE HAS!! For
17 years! Well, all I can say is HURRAY!
Ok, I need your help. I have an appt with my neuro Wed. And I am going to
make some demands. I have been doing alot of ressearch into my specific
problem and have run into a few stumbling blocks.. I want to be able to
have stuff all together to hand to the neuro and say "this is what I
would like to do to try to find out what I have!" Finally- a neuro
actually acknowledged they don't know everything and didn't just stick
pdism on me, and in knowing this I think that now, maybe, my input will
actually be heard and maybe even considered..what I need help with is-
I am going to ask to somehow be taken off of my drugs to find out the
effects that each one has. They tried this a few years ago, but only kept
me off for 1 day. i found out later that it takes quite awhile for some
of these drugs to leave your system. Any advice to put to the doc as to
how I can go through withdrawel safely?
I want the hospital records of 27 years ago when I had my bout of
encephelitis, menangitis, and shingles. The doc who treated me retired a
long time ago with no way to find him, and the hospital says they have no
access to records that old. i vaguely remember being told i made some
medical record book or whatever due to the rareity of the case, how can I
locate those records?
I want a PET scan. I have been trying to find out the closest place to
Seattle that may have one.
Mona (I think it was Mona) posted her dxn as being dopamine dystonia,(I
think). I would like to talk to her but don't know how to reach her.
I would like a list of all of the side effects of not only just the pd
drugs, but how they may or may not work together.. The ones I am on are:
sinemet cr25/100 every three hours
sinemet 25/100- whenever cr doesn't work
mirapex 1 mg three ditems daily
comtan 200 mg every three hours with sinemet
amitriptline- 75 mg nightly
loestrine nightly
benedryl- two tabs nightly
I would like to find out all conditions that sinemet is beneficial in
treating since originally being told 17 years ago that I had pdism due to
the fact that it was the only disease that responded to sinemet.
I would like to know if anyone else has suffered from severe side effect
problems of some pd drug.
If there is anybody that knows about post - encephalitis problems other
than pd
And, please, if anyone has any other ideas that may help pin down what it
is I have- it's worth a shot in trying.. I don't want to end up "never
really knowing what I have" as the ER doc said last night..
My doc appt is Wed...
one more requset,, Please,, say a little prayer,, and maybe cross your
fingers
Posted 2-19-2001
Well, Im down to 50 mgs of amytripline. It has not been easy. But, the
less and less i take, the more and more my rigidity, stiffness, and pain
go away. found out the severe tremers are caused from the sinemet, and as
I go down on the amytripline, i also go down on the sinemet. They have me
on lorazapam to be taken only for the first 2 or 3 days after a new
reduction. My daily doses are:
Effexor xr 225 mg in am
seraquil 25 mg in am
sinemet 25/100 cr in am
sinemet 25/100 cr every 5 hours
decreasing when feeling able to
seraquil 100 mg at bed
klonazapam 2 mg at bed
amytripline 50 mg at bed
the amytripline is being decreased at 5 mg every 10 days.
This is the most fabulous time I have had in years! I have a direction, I
know where this is going, I am feeling like a person again.. My head is
clear, my thought processes are normal, my memory is back. And this is
only half way home. Imagine when i get all of the way there
Posted 3-11-2001
Ok, makin this short..... I am offically in the hospital. Came in Friday
before last... Out tomorrow, so, I have limited time at this computer.
I am in the mental ward. Why? Because. When they decided I did not have
pd, they decided I did have anxiety. So, I got put onto tphese anti-phyco
drugs....
effexor- 225 mg
seraquil- 125 mg
lorazapan- 4-6 mg
amytripline 100 mg
and still on sinemet cr25/100
now..
I don't know if I told you all what has happened or if I have been too
zombieized to. They took me off of all my pd drugs. except sinemet.. went
through huge dts.. huge. 17 years worth in some cases. tried to take me
off amytripline. had me down from 100 mgs to nearly off and found out it
was controlling anxiety, put me back on and upped it back up to 100 mgs.
my mind and body were going nuts.
hense- the anti phsycotics. excuse the spelling. right now I don't give a
rats ass. anyways, the new drugs added before I was done dting off the
old made me try to commit suicide. But. That is NOT why I am in the
mental ward. oh, my phyciatrist new I tried to end it. He knew and just
advised I back off of the lorazapan some. that's it. but, when you are on
that dose, you cannot just back off. These high doses were supposedly
implemented until I was over the dts. problem was, I couldn't make it
that long. THAT was not anticipated. I am in here because my last regular
visit to my NEW doc the phsyciatrist- (my neurologist shook her hands of
the new dxn and preffered to just deal with my sinemet until it was safe
to take me off of it)had my husband carrying me into the office cuz my
body was shutting down. The doc didn't know what to think, so I am in the
hospital. In the mental ward...
not enough...
I get in here and am told by the following phsyciatrist here that I was
going off all drugs... again.... except the sinemet...MORE DTS!!!! Now,
to help me through these dts I am put on ----2200 MGS NEURONTIN !!!!!!
I finally make it to the end of those dts. Then it was time to figure out
if I need the sinemet. Apparently, in their opinion, I dont.. So,, they
begin to take me off... I am down to 1/4 tab of reg. 25/100 and
everything, EVER"YTHING shuts down. peeing
on myself- you name it. except
... my attitude was still intact.. The phsyciatrist shakes his head and
asks a different neuro to pop in... A neuro who SPECIALIZES in atypical
cases such as mine. One look and he says. You are dangerously low on
sinemet. You need it boosted now. Immediatly and fast. AND you need
mirapex. NOW!
next day--- im walking, talking and flippin off this whole dang place..
yes, I am one pissed off biker bitch.
dxn---- NON PROGRESSIVE ATYPICAL POST ENCEPHALITIC PDISM>
drugs----sinemet, mirapex...
thats all folks
While I was laying in the hospital, a nurse came in. A male nurse.. He is
the only one who seemed to know that there was nothing wrong with me
mentally. He began to pay special attention to my needs. Finally, when I
fell out of bed while trying to roll over.. the nurse had had it. I heard
him say to the doc..."this is not a mental patient and we are not
equipped to handle her problem here... you need to find out what is
really going on."
If that nurse was not there for me... I would not have made it. The
attentiveness was so needed...I know I gained resolve through it.
About a year ago, I decided to contact that nurse and thank him. I called
the hospital...there had not been a male nurse on that floor for over 5
years. I gave his description... nope... I even gave a first name... nope.
Yes, I believe in angels.
Sunday, January 04, 2004
Please pray for strength and resolve.
Sunday, January 04, 2004
I prepare to move out.
Wednesday, December 31, 2003
The blessings of adversity.
I have gone through some major things in my life. Many times, I look
towards the heavens and ask God.. why me? why so much? and what next?
Then His answer comes in ways such as i just experienced in the
chatroom...
To help others
I am reminded of a girlfriend who lost her father whom she adored to
cancer. He lingered for quite some time and it was devestating for my
friend to watch as he succommened to his illness. She was a fairly new
Christian and would ask "why"?
A while after her father passed, she was put in the path of a complete
stanger who was experiencing something very similiar. My friend was able
to help this person through the horrible suffering of losing a loved one
because she had been there. She could relate. She shared the persons
knowledge of pain and frustration.
Sometimes, it is easier not to question. Sometimes it is easier to just
have faith.
Sunday, December 28, 2003
On to looking at a new year. 2004.. Good grief, that came fast. Now for
setting new year resolutions... Ones that hopefully I can keep.
The first resolution I make is to give myself a break. If I cannot follow
through on the other resolutions, I am not going to beat myself up over
it..
1. quit smoking... And stay off the blasted things. Jan 1st I put the
patch back on...
2. Do something with my domain .. Harleys Angels.. Not sure yet where to
go with it, but I really want to do SOMETHING>
3.. Sit down and write.. seriously write.. I have about 3 million poems
that need to be finished. And a book I am writing on.. It stiumlates the
mind for me to write. Need to.. need to.
4.. Create more songs... same as above.
5.. attempt... REALLY attempt to control my anger. This is becoming a
must as pd advances.
6.. do some kind.. any kind .. of pd advocasy.
7. loose weight. I have never had to worry about this before, but since
the dbs I have put on 20 lbs. This is going to be difficult since I am
also quitting smoking.
8. Laugh more..attempt to look at life in a less serious mode.
9. Read my bible more.. give it ALL to God. Not just what I want to.
and 10..cerish what i have and not expect more than what God has blessed
me with.
Keepin my fingers crossed
Friday, December 26, 2003
Christmas is not over for me yet this year. The celebrating will continue
on through the 1st of Jan.
Yesterday, Christmas day, Jasmine and Chloe were here to open gifts with
me and Jim. That lasted an entire 30 minutes. Then we sat around for
about another hour trying to figure out what to do with the rest of the
day. I decided to take up my brothers offer of visiting his family and
indulging in some Christmas dinner there.
My mother, brother, his wife and 2 daughters were there. Along with
Jasmine, Chloe and Jim. And my wayward cousin... Guy. This man is a story
in itself, and deserves an entire posting dedicated to his life. But, not
today.
We did the usual Christmas family stuff. My sister and her husband didnt
show, which has become so typical that it is not even discussed any
more.. its just assumed. I havent seen her in 2 years now. Oh well... her
loss... She may venture out my way tomorrow which is when the family
plans on coming over to my house for a potluck dinner... because... MY
OLDEST DAUGHTER COMES HOME FOR A VISIT!
Yep, Melissa and her fiance are flying in from Oklahoma for a week. I get
her one day, which is fine. I know my daughter well enough to know she
will be gadding around with Mark in tow untill she nearly drops. Im lucky
to have her for an hour..AND I GET A DAY!
Sunday, I rest...
Monday my granddaughter turns 7...big birthday party planned at Chuckie
Cheeses... and...MY YOUNGEST DAUGHTER COMES HOME FROM HAWAII!!
Oh Lord, give me the strength to make it through these blessings...
and..Thank You for them.
Thursday, December 18, 2003
As Christmas nears, I think of many things. I do anyway, but the coming
of the season when families merge and we strive to all get along makes me
ponder the meaning of "family".
My family... not meaning my children and I, but my siblings, have never
really gotten along well. Christmas is about the only time I see my
sister although she doesnt live far at all from me. We are entirely
different people, and I strongly believe that if we werent related we
would never know each other. We dont really do now. We know each others
pasts, but not what we have become since moving out of the family home so
many years ago.
Her husband goes with the flow.
My brother and I see each other, but we have a wall up. Its as though we
want to block something out and if we allow ourselves to know the other,
our wall has to come down. That would mean an exposure to a pain that
neither of us wants.
His wife yearns to keep family peace. His children cannot understand, but
are trying to.
My mother tries to hold onto us.
My father is deceased.
My children are beginning to show signs of the adult children rivelry
that my siblings and I have. They love each other, but have drifted and
no longer know each other well.
My husband tries to keep up.
Christmas...
We celebrate the birth of our Lord. He came to us knowing He would
suffer. For us.. He didnt want the pain, but He came and endured for us.
No other reason.... just out of His love for us. All of us... doesnt
matter what kind of home we grew up in. Doesnt matter where we work now,
or if we work at all. Doesnt matter if we are alchoholics, drug addicts,
lazy, overweight, overworked, or overdone. None of what we do or have
done in our lifes... Christ died for us... as we are...
Now,
I think its time we try to get along... for celebration of Him.
Monday, December 15, 2003
Very thought provocing week last week. PD was especially hard the last
couple of days, and that always puts things in a different perspective.
Especially when my granddaughter is here.
I actually have 2 granddaughters. My second will be 2 years old this
month. I dont see her though, because my daughter adopted her out and it
was a very difficult thing for her to decide to do. She made special
effort in selecting a sound, Christian family. And, I think she chose
well. I met them when Caroline was born... they are special people. As
is my daughter.
The parents of Caroline assured me that I could send them items for her
and she would receive them. I was compiling a photo book and memory book
for her, but in the bustle of moving last november, have misplaced
them... and there is another thing I am unsure of... is it a good thing
for me to do?
Caroline is in a happy, secure environment that God has chosen for her. I
am not quite convinced it is a good thing for her to be aware of outside
things until the parents are ready... If that day comes...
I often wonder how she is doing. I would love to have seen her take her
first step and hear her first words. She looks identical to my daughter
and other granddaughter in the pics I have seen. It is difficult to look
at a picture of her and not shed a tear of remorse.
But, I am a mother to my daughter. And, although I may not completely
approve of some of her choices, this one I will give her my fullest
support on. She had a very difficult time in the first year following the
adoption. And I am thankful I could be there for her when she needed me.
Adopted Pride
I held your small body only once.
The time I spent with you was brief,
but it will stay with me for the rest of my life.
You blessed me with a yawn and briefly opened your eyes.
I looked at you content in my arms,
and saw my daughter.
The peace which surrounded us during the interlude
allowed me to relish in your beauty.
I embedded each detail of you into my memory.
The delicacy of your small toes
and your mass of soft brown hair is stored in my heart.
The perfection of your face will never leave me.
I met your new family.
The name you will claim is one to be proud of.
My daughter took special care in finding you
the best parents the world had to offer.
You will grow up surrounded by joy,
and my ears will be listening for the sound of your laughter.
Your mother wants you to know of your lineage,
and I will tell you with pictures and written letters.
The songs I would sing to you
on nights when your mind needed a lullaby,
and the true stories that only a grandma could share,
will drift into your ears though I will be far away.
My daughter has given a gift to the world.
While I bask in the cozy warmth of your vision,
I tell her how proud I am of her.
Ahead of you there is a whole world to explore.
With each new discovery you find,
your grandma will smile and shed a tear.
©January 2002
Laura Jeanne Dean
Merry Christmas Caroline
Friday, December 12, 2003
I had to serve my tenant with eviction papers yesterday. It is very hard
to do. Last month, my husband and I had to chase her down for the rent.
This month, here it is the middle of the month, and I still havent gotten
all of the rent. I know she is trying, but when I went to see about the
rent, my house was trashed and there were whiskey bottles everywhere.
The grandkids she had were taken from her because the authorities found
out about an old warrent she had. So, I think she may have felt like she
lost her purpose. I let her use an antique dresser I had, and when I went
over there, it was sitting outside in the rain... ruined.. the carpet is
completely toast.. and it was new last year. When I remarked how bad it
was, she said.. "thats how it was when I moved in. Dont you remember? Oh
yea, you have Parkinsons". geez and gimme a break.
I feel badly for people that are so lost. But, I cannot help them. Only
God can help them.
So, now I need to figure out what to do with my house. It is completely
trashed. I dont have the finances to fix it up, nor the energy. My hubby?
Yea, right...If I attempt to sell it the way it is, I will get nothing
for it. But, I cannot afford the monthly mortgage payment either.
This saddens me. It was my dream when i purchased it 15 years ago. Now,
it has turned into a monster hanging around my neck. I wonder what kind
of a test this is.. God, please enlighten me here... It makes it so that
I no longer desire to help anyone.
Friday, December 05, 2003
A Christmas Challenge
Winter’s cold breath has arrived in it’s dignified manner
gently announcing its entrance with a slow sigh
Fallen leaves escape to the air to dance pirouettes
And are soon joined by falling crystals
Sent down from a smoky white sky.
My senses are beckoned by a needful desire
To plunge headfast into the seasons numbing chill
I send to my heart a challenge
To unleash it’s decaying steadfast principals
That have been stifled too long behind thick walls
And grasp at the life giving nourishment
As the cold penetrates and revives my soul
The breeze laughs it’s way through my bitter spirit
Not allowing the stagnant thoughts to cling
Or even leave a miniature amount of residue behind
Forcing me to gulp in it’s feast of stark contrast
I no longer can be blinded by selfish, self-taught woes
My eyes are suddenly forced wide open
I am now alive
Buried deeply in my archive of memories
Is the joy of the Christmas of childhood
It now comes forth with a single bound
Not being detoured by the stench of souring detatchment
It sings upon it’s appearances arrival
And slides as smoothly into my new being
As my tongue used to slide down a candy cane
No more will the feelings of burdened labor
Stumble through stores full of Christmas presents
Nor will a smile be positioned upon a mask
On the ready for another’s approval
No more will this once hollow shell sit back
Just to acknowledge the gaiety of familiar faces
Wishing a moment that the festivities would soon cease
So that the normal daily events of life would return
My arms have now opened wide
Ready to embrace the festivities and joy of this special day
They no longer are weighted from self-imposed disabling anchors
My Lord has freed my soul through rebirth in His love
And on this special day of days
I can now, finally, truthfully and wholly
Joyously celebrate His birth to us all.
Friday, December 05, 2003
It is 9 pm... I am ready for bed. I need to stress here that I have
lapsed into pd depression for awhile. but, God and all of His grace has
again pulled me up out of it. Thank you Father.
After 19 years, it is difficult at times to keep my head up. I usually
try to be optimistic... but there are times, especially around the
holidays, when it wanes... and frustration begins to build. Sometimes, I
just want to shut it all down. Then I realize something.... I am here.
God wants me here for a reason. And I come to the conclusion that He is
not keeping me here to be unhappy. God is a loving God. He has given me
what I need to be happy. It just gets lost in the clutter of life at
times and I need to scrounge around and find it.
As Christmas nears, I have to try harder to keep from dwelling on
negativity. It is all in the mindset. I know sometimes it seems
impossible to come up out of a deep hole... but, I know that survival
instinct has shown me in the past that the fresh air is outside of the
hole... as is the light.
So, again... I have managed to dig in my steel toes, and climb the wall
out of my hole. God allowed me to find the strength in myself to get to
the top. And man... is it nice to breathe and see again.
Saturday, November 29, 2003
I have come to the conclusion that I have a broken spirit. The only thing
that can help is prayer.
Thursday, November 20, 2003
I am trying to write a poem to my dad. Writers block big time. It is
getting hard to formulate thoughts. Not that the thoughts wont come out,
but just when i am on a roll... bam... pd hits and i need to go down.
Then the thought kinda just is muffled when I get back to it.
It is hard to reflect when there is so much to reflect on. Sometimes, I
just want to be a droid. This poem to my dad began as a Christmas poem,
but so many things got tied into it, I really dont know where to go with
it. Poetry in me is so deep that when I finish a poem, I am literally
exhausted.
I want to write to my daughters, my mother, my friend who was dying of
cancer but is now in remission, my hubby, and myself. I want to cry with
them, laugh with them, sing praises to God with them... but, I cant get
it out right now. Dont know why. Maybe its too much.
I think instead I will take a break from reflecting today. Life is what
it is... sometimes dwelling on it makes things way too stark. I dont want
to be blinded. I am happy to just see.
Monday, November 17, 2003
Things are coming together here. The counselor made a suggestion that
took me quite by surprise. That Cameo move in with my mother. Mom
agreed, so over the weekend, my nest did become empty.
There are many reasons this move was suggested. Cameo is 18 now, and
although she is a fantastic kid... she has some problems that I cannot
handle any more. She has taken my bank card and caused my acct to become
600 dollars overdrawn, she also has stolen money several times out of my
wallet when I am physically down. She has a problem with this.. and
though I have tried to understand and help... I cannot be consistant.
Another problem is that she has horrible feelings towards her step
father... my hubby Jim. There have been reasons for her to develope some
of these feelings... but, she needs to get away and distance herself from
this place to be able to sort them out and get on with life. She will
never be able to do that here.
It is a difficult choice for me to make. Cameo is my baby, and I have
tried very hard to communicate with her. In retrospect, however, maybe I
have tried too hard. Sometimes guilt for not being able to be the mom I
think she needs overlaps into her world and may even distort her idea of
what kind of mom she really has.
I have come to a conclusion. I am who I am and I do what I can do. I can
do no more than that, and I will be content.
Thursday, November 13, 2003
Today my mother goes with me to my counseling appt. My mom has a
difficult time with what is happening with my pd... and I asked her to
join me to hear things from my counselor that I have a hard time
expressing. He has had alot of experience dealing with families of loved
ones suffering from a neurological condition. Hopefully, my mom will have
some of her questions answered.. and hopefully I will too.
My mom had to take care of my grandmother on my fathers side for many
many years. My grandma lived in our basement as I grew up. Her and my
mother had a love/hate relationship. My grandma grew up quite wealthy and
married an english professor. They only had one child... my father. My
mother grew up very poor. Her dad was a farmer with 10 children. My mom
has told me stories of how her and her twin sister used to have to take
turns going to school because they only had one pair of shoes between
them.
I think that my grandma made it difficult for mom. I remember as a child
that grandma would treat mom almost like a maid. Mom resented it, Im
sure. As grandma got older... mom was very dutiful towards her. She would
cook her seperate meals, clean her messes, and ... be her caregiver.
This continued until my grandma passed at the age of 91. No nursing
homes... just mom.
I can imagine how difficult it is for her to look at her daughter
advancing. She has buried her head for a long time. But, she can no
longer be in denial. PD is here and is advancing. Mom... its time to open
your eyes and see who your daughter really is.
Monday, November 10, 2003
Monday morning and it looks like day three of feeling great! I love it.
I cannot believe the change lately in my husband. He has been cooking
dinner every night, cleaning the house, giving me money without me having
to ask, rubbing my feet and back, calling from work to make sure Im
feeling ok, etc. etc. He even made me some lunches and put them in the
freezer so I wouldnt have to make lunch.. PRAISE GOD! ohhhhh... almost
forgot... HE asked ME if we could go to church...Now I know Gods hand is
on this marriage.
I have been very close to divorce many times. Finally I realized
something. Or should I say, God dropped a neon cow on my head. I am
stubborn and my pride has kept me from giving my marriage to God. He kept
saying to me, "how can I do My work when you keep trying to do it for
me?" I would hear Him, but continued trying to solve something that I
couldnt. Once I gave it to Him... REALLY gave it to Him, He is doing what
I couldnt... He knows my needs, and He knows my hubbys needs. What a
patient, loving God.
Being human is very hard. It is a peace once I realized that I am human
with human faults and God will help me to understand things about myself
that no other human can. He knows me better than I know myself and works
miracles with what I have to offer Him.
It is difficult to learn forgiveness. This is one of the lessons He
teaches me on a continual basis. I think I am finally getting to the
point of understanding it. I have written poems and have to keep
rereading them so they sink in... but, I know my Lord knows my heart and
is opening my eyes more and more all of the time.
Finding Each Other
What happens when the wind of reality
blows away clouds that once blanketed our senses,
and the sunlight that at one time penetrated our bond
becomes too brilliant for our understanding?
Where do we go when the road to the future
is blanched stark, no longer showing direction?
What happens when small annoyances become major burdens;
and the expectation level is raised,
while the acceptance level is lowered?
Which words can the knight in shining armor use
to adequately cover pain when battle wounds surface?
The princess has grown weary hearing words
that her bitter heart cannot understand the meaning of.
Separately they withdraw into thoughts of fleeing,
as the once majestic castle no longer feels like home.
The glitter fades, masks fall off
and marks are made.
The shoe won't drop, feelings wane
and curiosity stops.
What happens to forgotten plans
when daily life tolls each hour?
Has the perfect light forever faded from our sight?
God lays His mighty hand upon our injured hearts.
Revealing each of us as people who have experienced
our own struggles, hardships, luck and happiness;
crossroads and detours, gains and losses.
We learn that these are the puzzle pieces
that God used in creating who we are.
Once solid acceptance of each other
is embedded in our hearts,
We can see past the infatuation
and our Lord will guide us down our path,
hand in hand with the person He chose for us.
The Mountain
Standing beside the cold cinders
that once charred my thoughts,
I see a flame struggle to survive.
There is no air within my battered soul
To fuel it's desire to live.
Defeated, it pops in rebellion and fades away
Leaving me alone in silence.
I wander over to stir my remnants
and find nothing recognizable to claim.
The years I lived lay as dust,
Softly subdued upon the earth.
There is no need to mourn my loss
The emptiness holds no feeling
A gentle wind begins to waft round me.
Clearing the air of my old debris
to prepare the ground for sanctification.
I stand in awe as I watch His mighty hand
gathering my scattered ashes
to build a magnificent mountain.
The skies send a light to illuminate a cross
rising upon the crest of the hill.
My Lord is giving His life
for the one I have already spent.
The nails pounding into His omnipotence
send a flowing river of His blood
down the slope to where my feet rest.
I drop to my knees in humility
as I witness the immenseness of His sacrifice.
All of the questions I have asked in turmoil
have vanished in the light of His answer.
As the nourishment of His love heals my wounds,
His grace shows me my purpose.
I will search no longer.
The Lord has laid my path to heaven
and I will climb the mountain He built for me.
As my legs grow weary and cause me to stumble,
His love will strengthen my resilience
and guide me to the top of the hill
where I will enter His almighty gate.
Sunday, November 09, 2003
I feel great this morning! I love it when my days start like this. Sets
the tone of the day. Thank you God. I told my husband to go fishing or
something. He needs to take a break, and it is easier for him to when I
feel ok.
Things are getting better with my marriage. There are still many issues
to be resolved, but they are working out. The stress of PD in the home is
huge, and it eats at us. I believe God is working with both of us though.
We are both trying to figure out how to cope with a disease that wants
control and He is the only one who can show us how to.
We began the weekend on a bad note that quickly turned around. Instead of
us both harboring bad feelings, we actually began to communicate. Wow.
What a concept here. That is one area where there has been alot of
difficulty. Neither of us really know how to do it, and trying to tell 2
adults how to ccmmunicate is next to impossible. Especially when both are
used to doing it our way. A battle of wills, so to speak. What a
difference it makes when the defences are put down and you listen...
really listen.. to the other person.
We both grew up in dysfunctional homes, and we both went through rotten
marriages. The walls have been up for many years. I guess it just takes
awhile and alot of love and patience to realize that we are not going to
destroy each other. God is guiding us towards that..
So, today I start out good... HIP HIP HORRAY!!
Friday, November 07, 2003
Had another callibration on Wed. This one did really make a difference. I
have cut my sinemet in half! i now take 1/4 of a 25/100 every 3 hours
instead of 1/2. Wow. Feeling less side effects. Less dyskenesias, less
cognitive impairment... YIPPEE!!
Am seeing a new neurologist. This guy works with OHSU, but hes located in
Seattle. Much closer. Very very good. The programmer is very good too.
Thats all he does, and he is the only programmer there. The thing I like
about him is that is extremely gentle. Makes a world of difference. My
last callibration was more difficult because they turned up settings
quite quickly and it was hard on my body. This guy was very slow... and
he plans on continuing to be.
I thought i was set at 4.0 on one side. But, i was only 3.6. Now, I am
4.0. This setting is not as high as it sounds becuase of the combination
used. Hard to explain. The other side is set at about 1.3. The programmer
said my batteries should last for 5-6 years.
I read something quite interesting in the notes from OHSU. In their
opinion, judging from medical records they attained prior to my
diagnosis, they think i may have had pd as long as 23 years. That is and
isnt a surprise. I remember feeling strange since the encephalitis... so
it makes sense that pd would begin about that time.
Another 3 months till the next callibration.. So far, so good.
Wednesday, November 05, 2003
Today I had to face an acceptance. Another loss. I can no longer handle
my part in the finances. I had to face reality and sign over my soc sec
check to my husband. My choice. I had to. And, it hurts very badly.
I used to be so on top of things. Single mother raising 3 kids. buying a
home, buying and selling antiques, running a leather business.. Now, I
cant even keep a checkbook. I try. Try very hard. But, there is no
concentration in me left to do it. When checks bounce, and you loose the
checkbook one too many times.. you have to face the reality. Give it up.
I have known it for awhile. But, fought it. I began getting angry and
tried to fight my way out. But, in the end.... I forfeited.. White
flagged.. surrendered... PD has won this battle. But, the war is not over
yet.
It is also my 5th wedding anniversary and the first anniversary of our
new home. I spent it yelling at my husband out of sheer frustration of
loss. So, consequently, I sit here... alone.... thinking
Monday, November 03, 2003
You, Inside of Me
Why do I condemn you, when you are my own?
I abhor you, despise you, cannot find your home'
You are my limbs that disown me whenever you desire
My brain that wont shut down when I want to retire
You disgrace me with advancing disfiguration
and allow me no doubt of your continuation
the pendulum swings when I attempt to control you
and medicinal side effects add to the brew
I stumble to find a clear path to follow
as you cover my vision with unstable tomorrows
purposefully quivering at the stress i am given
i cannot control you, and its my body you are in
at night, on my knees, i pray that this ends
and ask God to show me what His will intends
He lays out His hands to nourish a soul spent
and shows me who I have become through your advent
the things that i had once taken for granted
are luxuries now that humilities been planted
and time which once was a sparce commodity
is here for me to spend with friends and family
to trade you away would change nature itself
i cant be who i am if you're put on a shelf
so, i will look at you now.. straight in the face
and know I will live with you.. with my Lords grace
I will wake up each morning, and challenge your melee
for my vision has cleared, and I now see my way
my body may have you as a permanent guest
but, you cant have my soul
that.. the Lord has blessed
Untying the Gag Order
Can I slide away, ride away, hide, undecide away
Leaving no clue of my new existance?
Undoing, ungluing, excluding the protruding
zit that has become my bane and resistance..
My surly, snarly, whacked out behaviour
Is not hue nor shadow of a once flattering silhouette
Beguiled, betrayed, taken out, my bed unmade
Creates thoughts never known to throw out the sheets wet.
The unseen, unclean, scared unrepaired
joke of a body is as foreign as desert
I try to absorb, reward, retard, then discard
This displacement of creation I have to inherit
To fantasize, visualize, scrutinize and penalize
Gives the ball in motion too much room to roll
When it comes down, it hits ground and rebounds
and freshens its mark with a much stronger toll
I freeze, gaze, do a 360 and hurl
to be masochistic is not my cup of tea
My eyes have found skies that He sanctifies
and His glory is all I need to find me.
Friday, October 31, 2003
I went to my counselor yesterday. I go twice a week now... very
beneficial. He wants me to begin writing a book of my life. Thinks I have
a fascinating story to tell. Weird. To me .. it has just been my life.
I guess I may give it a go. There have been alot of bad times which
writing helps me deal with, and there have been alot of good times which
I tend to forget and writing helps me remember. Writing will also help me
remember who I am. Which is a very important thing in this stage of the
game. I think I like my counselor.. very wise man.
Yesterday, we spent alot of time talking about the biker days and what it
meant to me to buy my own harley. I rode so much on the back and under
the whim of who I was riding with that I decided I wanted to ride when I
wanted to ride. There is nothing at all to describe the feeling of being
on a motorcycle. Front or back... It is freedom. Plain and simple. The
bikers have a saying... "If I have to describe, you will never know"
True, so true.
I had alot of connections in the biker world at the time I began
looking. The word got out, and I recieved a phonecall from a guy in
Seattle saying he heard I wanted a good bike. He worked at a chrome shop
and knew of one... The price was right, low miles, and stock.. I jumped
on it... my 1978 superglide.
It took awhile for me to get the hang of it. Balance is always key.
finally it clicked though.. and my face was in the wind. I was only able
to ride slightly over a year before my legs got to the point where I
couldnt hold it up. I bought a sidecar, and it was ridiculous trying to
turn the thing. I landed in a ditch and decided it was time to face
reality. I would not be able to ride my own scoot. I had to be dependant.
My ex husband was an alcoholic. He decided to take my bike out once while
totally shitfaced. When I saw him walking down the driveway without it, I
knew... he dumped it... hard... and I cried.. But, the bike got fixed.
The marriage never did.
My hubby now has never been on a big bike. We had a difference of opinion
as to how often he would be riding it without me... and I requested he
ask me before just taking off on it. The pride we both had got in the way
and cost us alot of time. Finally, last week... my bike got pulled out
and is going to be overhauled for next summer. My face will once again be
in the wind.
I guess one needs to reach a point in life where pride is not as
important as happiness is. I am happy to be looking forward to being on
my bike. Even riding on the back.
Thursday, October 30, 2003
I was chatting with someone and they said something that made me think...
deeply... about my life. I do alot of that, but this gave me a new
insight into myself that was at first difficult. The more I think on it
though, the more it explains alot about what and who I am.
The conversation began with how long we have had pd. When I went through
my usual confession of having pd 19 years, followed by the tale of having
encephalitis at age 15, the response came that left me silent for
awhile...
"Thats all you know then"
At first I shook it off. But, the words kept after me, sinking me into a
depression for awhile. It seemed like that was all I knew... being ill.
It has become so much of a part of life to me that I really dont know
anything else... physically.
Then today... another chatter friend of mine made me realize something. I
have become who I am through my illnesses. And there is a strength I have
gained that would not be there had I not been ill. Not just a strength,
but an appreciation of life.
I dont remember a time after the age of 15 when I wasnt battling
something physically. It took a few years before the dxd, but I knew
something was wrong. And during those years, I had to become strong in
order to survive. I think God has given me something here...
Thank you my dear friend for making me see myself again. Your words have
inspired me to look into the mirror and see ME, not my physical state.
Wednesday, October 22, 2003
thank you for reminding me.
God has given me strength. Yes, He has... onward and upward..
Monday, October 13, 2003
Pd is a horrible disease... God is a wonderful God. He has put His hand
on me and allowed me some very good days lately. I thought about what the
cause could be. Either my meds are finally settling in from all the
changes after the dbs, or I was going through a really bad time cuz I may
have had some cold or flu bug... or menaupause... or stress, or, or..
Whatever the case.. I feel better, and this I attribute to God.
'
I have learned so much through having pd. I have suffered much from it,
but I also have gained. I was in the Christian Womans chat the other
day... and one of the blessings began pouring out of me as I witnessed
His love to an 18 year old girl having problems with her parents.
I hated my dad.. hated him. I grew up in a well to do house, but Dad
drank... alot. I was extremely rebellious, and very outspoken. Dad didnt
like this, and in the only way he knew how to... disciplined me. I ended
up getting pregnant and married at age 16. I think dad was as happy to
have me gone as I was to leave.
For years the hostility between us was visible. I literally hated the
man. I vowed that if he were to ever die, I would never attend his
funeral. And my mother could do nothing to squelch my hatred. My walls
were to thick for her to penetrate.
Around the age of 35, I began getting an overwhelming desire to set
things right with dad. I started callin him.. out of the blue. just to
talk to him, not mom... I think he didnt know what to do... But, after
the third or fourth call, his voice mellowed and he talked to me. I sent
him his first fathers day card from me. I stopped by and visited. I
wanted to know dad...
That year at Christmas, my brother and sister and I sat in our parents
living room waiting.... Every year, dad would get drunk and ask us to
talk of our achievements that year. We did not enjoy this. Dad was
extremely intellegent.. an aeronautical engineer.... and we could never
be to his standards.
My turn came to speak. I had been unable to work a real job for a couple
of years due to pd. Although dad knew of my pd, he never spoke of it, so
neither did I. Neither of us wanted to face that reality.. I even decided
I would force myself to work.. somehow..
I attempted becoming a plumber. there was an apprenticeship program in
town and I went and signed up for it. You had to take a series of tests
to get into the program. I took the written... and ACED it. The
instructor said my score was even higher than his had been. He said i was
on my way to being an apprentice.. Then I took the manual dexterity
test... PD showed its ugly head. I couldnt for the life of me put those
stupid boxes where they went, or move my fingers a certain way. I failed
the test and was out of the program.
But, dad needed to hear something from me. So, I told him about the
apprenticeship and how I aced the written test. I really played up my
score and how impressed the instructor was. Then dad asked why I wasnt in
the program. I told him about the manual dexterity failure and waited for
the usual snide comment. There was only silence for about 5 minutes.
Then my dad did something he had never done before. He told me he loved
me.. and reached out and held me. I held him back, and cried.
Three months later, Dad passed away unexpectedly.. in his sleep. God had
given me time to make ammends and allow us to find our way to each other.
And... God had used PD..
Saturday, October 11, 2003
What I Did This Summer...
I laughed, cried, got angry, and was overjoyed. My summer was very, very
full. This was a summer for learning about emotions. Mine and others
around me. It was a summer for learning patience, forgiveness and
tolerance. A summer of searching and discovery. A summer for figuring out
what being human means. A summer given to me by God...
I began this summer with a slap of reality. My neuro told me my pd had
advanced dramatically, and I needed a dbs asap...or else I would soon be
living in a nursing home. This hit so hard, the facade I had been wearing
could no longer stay in place. Once it dropped to the floor, my image
looked back at me... I decided to go for the dbs and it was schedualed
for July 23...
The time between my postings about the dbs and the actual day of its
arrival was spent in awe. The gifts of friendships, prayers, cards,
flowers, and a very special prayer cloth came to my side... The joy was
overwhelming.. and still is.. I will never be able to express what it
all meant to me... ever.... thank you so very much.
The dbs went extremely smooth. God heard the prayers, and I felt Him by
my side. The halo afterward hung around for a very long time...and
although the rigidity returned... the pain didnt. And that in itself made
everything worth it. Big tasks are becoming little again.. and hope is in
my heart.
I am also off of 3 medications- neurontin, topamax, and benedryl... and
have cut mirapex in half. My mind is clearing more and more, and the
addition of paxil has helped much in the anxiety department.
My youngest daughter turned 18 in Sept. I no longer have a child.. but, I
still have 3 children... Now 28, 26 and my baby ... Cameo. It is a
feeling to become adjusted to.. The empty nest is closing in.. I have
been a mother since I was 16. I dont quite know how i will feel once they
are all gone.. I have not faced that yet.
Finally, this summer was one for self examination and confrontation. I
found the Bible again, and began to immerse myself in His words. His
message is coming across clearer and clearer... I need patience..
I feel more at ease at the close of this summer than i have for awhile. I
have taken absence of many things that used to consume me, and spent that
time on reflection. I have begun seeing an excellent counselor who has
experience with people living with neurological conditions... and has
helped me to find an answer to many questions..
I am human.
Sunday, October 05, 2003
The dbs is not a cure. I was elated when I had it, but the symptoms are
all back, minus the pain. This is a big blessing, yes. But, I think my
hopes were way too high. I have pd... oh yes, I do.
The rigidity is bad. Last night I could not move.. anything. Not even my
eyeballs. I felt comatose. Thank God the sinemet works still. I dont know
what is going on.. but, I finally looking seriously at reality. it is as
the docs have told me. Late stage 4. Next is stage 5. Finality.
I am scared. I do not want to go to stage 5. But, it lies ahead. I dont
know how to prepare for it. Is there a way one can adequately prepare for
something like that? i have been so strong up til now. But, the strength
is waning. God, stay with me.
I have managed to hang on to the good moments and utilize them when I
can. My good ups allow me to play the piano and write poetry. Sort of
write anyways. Most of my poems are ones that i began along time ago and
never finished. The thoughts to begin anew do not come.
it is time to accept this. I must give myself a break. I will never
be "normal" and i can no longer beat myself up trying to be. I am no
longer in a wheelchair, this I can contribute to the dbs. Another good
thing. I must count my blessings... but, still face my reality. The pd is
still here.. and is still advancing.
It is time for me to get serious about what lies ahead and quit wasting
time dwelling on triviality.
Sunday, September 28, 2003
Tomorrow I go to get tuned up again. Maybe I will ask them to overhaul
the engine while they're at it. I wonder if a body transplant is
possible. I don't know if I am fatigued from the surgery, from the change
in meds, or what... but man, do I get tired... easily.
My face is getting blotchy too. Dont know what that is all about. I have
difficulty looking in the mirror these days. I have put on weight that I
know this winter will add to. Usually, the summertime is when I burn it
all off from the previous winter. But, this summer i was having the dbs.
And now... the fatigue.
I used to do some modeling.. nothing big. But, for local hair designers
and photographers portfolios. I was approached by management at Guitar
Center when I worked there if I would model for them. They wanted me to
be stratling a guitar.. (cant remember if it was a Fender Strat or a
Gibson Les Paul) with the header reading "Gimme some Neck at Guitar
Center" My husband at the time was ok with it until he found out it would
be plastered on the side of the city buses. That was the end of that...
It is difficult seeing this change in my appearance. I guess you could
call it vanity. I call it another thing lost. I do accept the fact of age
doing its thing. There is no way a 45 year old can look like they did at
25. Its just difficult when the heads I now turn are full of stares of
curiosity or pity. I have decided to make a tshirt to wear that says
either, "I have Parkinsons Disease, and I also have dignity.. please dont
stare", or "Instead of staring, why not ask me about Parkinsons Disease?'
or "I am just like you, except that I have Parkinsons Disease.. do you
like to be stared at?"
I know that people generally dont mean to be rude. I also know that there
are many people that look out of genuine concern. But, just one word or
look at a bad moment can eat at my dignity a long time. I end up going
home and looking in the mirror... and remembering...
Saturday, September 27, 2003
Life can be very difficult at times. God allows things to happen that we
have no idea how we are supposed to cope with. But, that is how we gain
strength in our faith. We NEED to lean on Him. There is no way we can
walk through this world on our own. He has got to show us the way,.
My daughter Cameo just turned 18. She is bright and in love and
sparkles... most of the time now. But, she has a very deep dark
depression that I didnt see a few years ago. She attempted suicide... It
was an eye opener to her being for me. She couldnt handle things and i
didnt know. The guilt and frustrations that stem from it still consume me
at times. She took over 150 asperin tablets and closed the door and
waited. God lead me to find her in time..
I have contemplated suicide. Life gets very dark when the light vanishes
from our minds. The people around us dont seem to matter at all anymore
because we dont feel that we matter anymore. We forget all about the ones
who are close to us. Instead we dig the hole deeper and deeper so the
light will not blind us. The darkness becomes our companion and we dont
want to share it. Then, we become stuck in the hole when the walls around
us begin to crash in. The energy that it takes to dig our way back out
has left us. We are just too tired to care any more.
God knows this... He is there. Reach for Him. He knows girlfriend.. He
knows. And, He has a hand to help pull you out. He is the only light that
is bright enough for you to find your way out. Give it to Him hon...
please. Let Him be your strength... let Him do for you what you cannot
do. Dont even think.. just give it to Him.
I will be praying.. I love you
Saturday, September 20, 2003
Today, my youngest daughter is celebrating her 18th birthday. Many, many
things are going around in my mind. She is now an adult... wow. There
were days when I thought i would never make it to this day. Nor she...
she attempted suicide at the age of 14. Hard, very very hard.
But, here she is. My baby turns 18. No more minors under mama's wings. I
feel the empty nest syndrome already and she is still living here.
Motherhood has been about the only consistant thing in my life since I
was 16 years old. It is the one thing I think I have always known how to
do. Although each child is so very different, they had one thing in
common. They wanted a mother. And, I was there...
My youngest baby is now an adult. Wow...
Too many emotions to work through right now. Besides, I have to get to
the park where her party is being held. I am bringing her birthday cake.
Strawberry cheesecake. and the 18 candles to put on top...
Happy Birthday Cameo. I love you.
Sunday, September 14, 2003
It is Sunday morning, and i think I will attempt to go to church today.
it has been awhile since i have attended, and I feel the need to quench
my thirst. His word does that for me.
The church i have found is wonderful. The only thing is that it doesnt
have any outreach programs for people with disabilites that cannot
attend. There were so many times that i really wanted to, but was having
difficulty in movement.. so I didnt.
I have thought about starting some type of outreach program before. But
there has always been some type of spiritual unrest within me, that I
didnt feel right about the timing... hhhhmmmm, I wonder what this means?
Maybe I am not being strong enough about my faith.
It is hard to always be strong. I know Im not supposed to worry so much..
that I need to give it all to God. But at times, it is impossible to.. At
least in my mind it is.
When I think about it, I have been very blessed. I have always had my
needs met. The ones that are important anyways. The requirements of
living in this world that I believe are important are not always the ones
that I really need. And many times, the little things get overlooked
when I begin to wallow in the... "boohoos". But, the little things are
just as much a part of the picture as the big, grand visible things.
Perhaps even more so. Its the little things such as having a roof over my
head and food in my stomach that keep me going. Sometimes I get humbled
when the threat of losing these little things appears. Then they become
forfront in my life and are VERY big. God has a way of showing us what is
important..
I wrote this poem awhile back. I have dedicated it to my husband.
My Needs
You are my companion in a life
full of uncertainty and tribulation.
Your desire to make days easier for me
is a pillow for my aching body
and a lift to my spirit
The tireless chivalry you carry
shows wear beneath your brow
Our lives can no longer guess
at which course is necessary to take
When reality calls for the truth
you look to God and ask
what my needs are
There is no map or guideline
to inform me of what lies ahead.
Your questions echo through my mind
bouncing off of the walls of perception.
They land in the lap of my independency
as a test of my faith.
In the game I have been forced to play,
the rules are continually changing
Don’t try so hard to understand
There are times that knowing the answer
doesn’t matter and wont change a thing
Hold my hand, look into my eyes
Enjoy the good moments when they are here
and share my pain when hard times come
God will provide for our needs
He already knows what they are.
Yep.. I think its a day for reflection.
Saturday, September 13, 2003
It is nearly 7:30 pm. I have decided to go ahead and post here knowing
who reads will know about what I am writing... but, when I agreed to do
this, I knew that... and I need to talk about it.
My husband and I have been having major difficulties. It has been so
close to divorce several times, that I have contacted a lawyer and even
found another place to live. i have moved in with friends, relatives...
you name it. But, I keep coming back.. why? Because i love him.
When you have been single for a long time.. and then you marry an
abuser... (my ex husband), you begin to find that you are not only
scared, but also paranoid after the marriage is over. I have just
recently been diagnosed with post tramautic stress disorder. A left over
from my previous marriage. He passed on last November, and it has left a
series of different emotions inside of me that range from guilt to anger
to vulnerability. You see, he died of a drug overdose.
I am a Christian. It was very hard for me to make the decision to leave
him, but the abuse became too difficult to live with. On the night of my
40th birthday, he showed up higher than a kite at 10:30 pm... tried to
take me somewhere, when I became scared, he locked me out of the house,
turned off all of the lights, and cranked the stereo so loud it rattled
the windows. The problem was, my meds were in the house. I waited outside
as long as I could. Then my legs went out. I could not stand up. I
crawled to the ladder, got it to my bedroom window, and inched my way up
it.. praying he had passed out.
He had, but I woke him up when I opened the window. He became very angry
at this, and I barely reached my meds when he began to beat me up. When
he finished, I laid on the floor, and waited for my meds to work. Then i
got out of the house and went to a neighbors to call the cops. They
counted 12 bruises on my back. He went to jail... i got a divorce.
My husband now does stupid things at times. But, dont we all? He has also
been wonderful. I have been torn between trying to see how much of what
he does is really worth thinking divorce over, and how much of it is a
part of my ptsd.
I guess i will have to let God show me which way to go. I knew I had been
released from the last marriage. But, I dont feel that here. And, until I
do, I guess He wants me to work it out. I am no angel. I have a temper
that gets in the way. But, I am finding out that I am human, and I am
learning how to cope with things without getting angry all of the time.
My husband is human too. And, he is learning how to live in Gods love...
a new thing for him.
Things are getting better. God is at work, and there is always something
to learn when He wants to teach us. We just have to let go... and let God.
Tuesday, September 09, 2003
Well, it is nearly 7:00 pm and I am glad the day is nearly done. Alot of
reality was looked at in these last few hours. My advancing pd is still
advancing... despite the dbs.. I am still having downs. And today they
were quite severe.
I had a new lady come over to begin housecleaning soon. That is so wierd
for me. I always hated, HATED to clean house. But now I would give
anything to clean my home without help. Another reality check.
i also am having her clean my rental. Not because it is vacant, but the
lady living in it needs help. She is not handicapped, she is amazing. And
she inspires me.
When I met her, she was living in a small RV at a friends house. She had
just gotten out of an abusive marriage of 17 years, and was trying to get
something together that she could call a life. She told me at that time
that all she knew how to do was to be a waitress, but she had goals. She
had just found God.
A few months later, I saw her again. She was bubbly and in glee. It was
the fourth of July, and i think I saw more fireworks in her eyes than in
the skies above us. She had just retained custody of her four
grandchildren. She was thrilled! But, the way she got them showed pain
behind the sparkle. She had to turn her own daughter in for child abuse.
The kids were then in the system for awhile, and now she got to have them
to raise. They were ages that ranged from 6 months old to 6 years. The
woman is nearly 50.
The only problem was the living situation. There was 6 months to find a
real home for her grandkids besides the rv. She needed a regular home, or
they would remain in the system. She declared that God would provide and
smiled at me.
I didnt see her for awhile, and kind of forgot her. WHen you dont know
someone very well, you feel their being when you see them, but unless a
reason comes along to bring you closer to them, they fade into memory. I
liked her alot, and respected her, but felt like she would pass into the
wind as so many acquaintences do.
Then suddenly, out of nowhere, my tenants in my rental gave notice. They
were moving in one month. They decided to buy a house. I couldnt believe
it! They loved it at my house. I paniced. We had spent most of our extra
monies on dbs stuff, there was not enough for another morgage. I didnt
want to sell. I thought briefly about the lady with the four grandkids,
but figured what I had to charge for rent to make my payment would be too
much for her on a waitresses budget. I put the word out to two people.
House for rent! About a week later... she called ... she had heard and
asked me to please let her have the house.
When she came to look at the place... she cried. i have always thought my
home was nothing special.. but, SHE CRIED! The rent is paid by the
government agnecy for the kids. She loves it, and they love it.. and all
has worked out...
So, i have decided something as I type this tonight. I may not be able to
clean house, but I know that God is using me in other ways.
Sunday, September 07, 2003
I had a very strange thing just happen. I was sitting at the computer
here... and all of a sudden.. my bladder let loose. Didnt even feel it
comin, just began to pee. hhhhhmmmmm....good thing they make those adult
diapers teeny weeny now.
I have learned through pd what vanity is. And how I may as well get used
to the fact that people will look at me differently than they did before.
When I was in my 20s I did some modeling. I was told i was quite pretty.
Then, pd started showing its ugly head. I got looks still, but many times
I felt like I was being looked at with a kind of... "what is wrong with
that person" in their minds...
As pd got worse, the looks turned into ones of sympathy or pity. I felt
like wearing a sign on my back as I pushed myself around in my wheelchair
that said.. "I have Parkinsons Disease, and I am still a real person so
please dont stare"
Many times I dont think people know how to react, so they either dont say
anything at all and just follow me with their eyes, or they become too
friendly treating me like I am a long lost best friend.. EH, well.. I can
just keep on a truckin.
Vanity.. hmmmm. I now have a semi ROd Steward hair cut with a big scar
underneith, 2 wonderful scars from where they put the stimulaters, and
wires running along the side of my neck. I feel like i look like the
bride of frankenstein... but, at least I can say I no longer walk like
her!
I think that alot can be said for us pders. We know who we are once
vanity is changed in us.We know what is truly imporant in life. It is
nice to look nice, yes... but, its even nicer to FEEL nice. When we feel
good, we shine.. oh boy do pders shine. It becomes contageous and the
world around cant help but look at us then.
Thursday, August 28, 2003
I really don’t know what I am going to be doing today. Sometimes I wake
up feeling very depressed knowing there really is nothing that I have got
to do. I don’t know if this comes from years of being a single mom and
all of the chaos and demands that go with it, or if I am just tired of
not having anything to do.
The lack of organization I have developed drives me totally nuts. I get
bored, start a project, put it aside, start another project... go look
for something I need for that project and find 5 other projects in
various stages of being uncompleted and set aside. And the wild thing
is... not one of them has anything to do with another! So I attempt to
organize, and get distracted, end up forgetting the organizing part and
start another stupid project!
I feel as though I don’t really have a purpose at times. I think this is
why I go nuts trying to invent one for myself..What I end up doing is
making one long, strung out mess from one end of the house to the other.
My purpose then becomes... “Now I have to clean this” But, that is a
sore spot in my brain. I hate cleaning with a passion... I end up walking
away from it, and seeing all the other projects I have walked away from..
SO I leave the house. When it gets really bad, I go on vacation
somewhere. Usually I end up coming back, getting a garbage can and
tossing all of it.
But, then God shows me in small ways that I do have a purpose.. Last
night I was in this Christian Women’s chat room and a 19 year girl had
come in. She had gotten raped. I began talking with her, and she
requested a one on one conversation. I prayed for the Holy Spirit to lead
me in my words to her.. He did..
It was surprising, but nothing came out about how horrible the crime was,
or how bad the guy was... which it was just me talking and not God
leading me.. those would be at the top of the list. She needed to feel
loved. She needed to feel worthy. She needed to feel God. I think He used
me to help her find Him.. What a good rush that is..
I have been through so much in my lifetime. So very very much. I get
depressed thinking that so much of it has been bad, and then God puts
something like this in my life to help me remember a few things..
1. We are all suffering in one way or another. I am not any more so or
any less than any other. I have had hard trials, but have learned from
them and now it is time to help another suffering.
2. Just because I do not work or have difficulty at times in doing what I
consider “important” things doesn’t mean I don’t have a purpose. What God
considers important is what matters.
3. Faith always.. always.. provides us with fulfillment.
Today, I begin again.. as usual. No time clocks, no deadline pressures,
no hurry up and waits. Just me rummaging around through my life. But
along with the sense of frustrations from the every day parkie lack of
organization will come a memory of yesterdays blessing of helping a
victim of sexual assault.
You don’t need an organized mind to help another in need. Thank you Lord
Sunday, August 24, 2003
GOod morning WORLD!!!!
I am a survivor and proud of it! Oh, the lessons I have had to learn on
the way though. They are tinkering with my meds now.. post dbs.. and this
time... FINALLY>.. I am feeling like they are on the right track.
A couple of years ago I went through hell with a misdxd of me having a
panic disorder instead of pd. THey took me off many drugs, put me on many
others, then took me off of some of those, and put me back on some of the
ones I was originally on. Just to find out that.. yea.. i do have pd..
BUt, i was left on neurontin (supposedly for the pain) and left off of
amytripline. THe same neuro has since put me on topamax and told me to
take benedryl at night to sleep.
The docs at OHSU were alarmed to see me on neurontin and topamax.. and I
have been weaning off of those 2. Last night, I quit taking benedryl and
instead... added amytripline.. yes... amytripline. I didnt want to, but I
really trust the guys at OHSU.. and when they suggested I try it again, I
did. And MAN,, did I sleep!
I am praying that maybe... after all of thses years they may be finding a
good combo of meds for both body and mind.. wouldnt that different?? I
have a social worker with a vast background in brain injury, and she has
informed me that due to my encephalitis, I am extremely prone to meds
side effects. I am posting here some of the side effects i have found
with the meds I am taking... YIKESA! No wonder I have felt like a basket
case.
Sinemet The most common serious adverse reactions occurring with
carbidopa-levodopa are choreiform, dystonic, and other involuntary
movements. Other serious adverse reactions are mental changes including
paranoid ideation and psychotic episodes, depression with or without
development of suicidal tendencies, and dementia. Convulsions also have
occurred; however, a causal relationship with carbidopa-levodopa has not
been established.
A common but less serious effect is nausea.
Less frequent adverse reactions are cardiac irregularities and/or
palpitation, orthostatic hypotensive episodes, bradykinetic episodes
(the "on-off" phenomenon), anorexia, vomiting, and dizziness.
Rarely, gastrointestinal bleeding, development of duodenal ulcer,
hypertension, phlebitis, hemolytic and non-hemolytic anemia,
thrombocytopenia, leukopenia, and agranulocytosis have occurred.
Laboratory tests which have been reported to be abnormal are alkaline
phosphatase, SGOT (AST), SGPT (ALT), lactic dehydrogenase, bilirubin,
blood urea nitrogen, protein-bound iodine, and Coombs test.
Other adverse reactions that have been reported with levodopa are:
Nervous System: ataxia, numbness, increased hand tremor, muscle
twitching, muscle cramps, blepharospasm (which may be taken as an early
sign of excess dosage, consideration of dosage reduction may be made at
this time), trismus, activation of latent Horner's syndrome.
Psychiatric: confusion, sleepiness, insomnia, nightmares, hallucinations,
delusions, agitation, anxiety, euphoria.
Gastrointestinal: dry mouth, bitter taste, sialorrhea, dysphagia,
bruxism, hiccups, abdominal pain and distress, constipation, diarrhea,
flatulence, burning sensation of tongue.
Metabolic: weight gain or loss, edema.
Integumentary: malignant melanoma (see also CONTRAINDICATIONS), flushing,
increased sweating, dark sweat, skin rash, loss of hair.
Genitourinary: urinary retention, urinary incontinence, dark urine,
priapism.
Special Senses: diplopia, blurred vision, dilated pupils, oculogyric
crises.
Miscellaneous: weakness, faintness, fatigue, headache, hoarseness,
malaise, hot flashes, sense of stimulation, bizarre breathing patterns,
neuroleptic malignant syndrome.
Nervous System/Psychiatric: Chorea, somnolence, falling, anxiety
disorder, disorientation, decreased mental acuity, gait abnormalities,
extrapyramidal disorder, agitation, nervousness, sleep disorders, memory
impairment.
Body as a Whole: Asthenia, fatigue, abdominal pain, orthostatic effects.
Digestive: Gastrointestinal pain, dysphagia, heartburn.
Cardiovascular: Palpitation, essential hypertension, hypotension,
myocardial infarction.
Special Senses: Blurred vision.
Metabolic: Weight loss.
Skin: Rash
Respiratory: Cough, pharyngeal pain, common cold.
Urogenital: Urinary Incontinence.
Musculoskeletal: Leg pain.
Nervous System/Psychiatric: Mental changes including paranoid ideation,
psychotic episodes, depression with suicidal tendencies and dementia;
convulsions (however, a causal relationship has not been established);
bradykinetic episodes.
Gastrointestinal: Gastrointestinal bleeding, development of duodenal
ulcer.
Cardiovascular: Cardiac irregularities, phlebitis.
Nervous System: Numbness, increased hand tremor, muscle twitching,
blepharospasm (which may be taken as an early sign of excess dosage,
consideration of dosage reduction may be made at this time), trismus,
activation of latent Horner's syndrome.
Psychiatric: Delusions, euphoria.
Gastrointestinal: Bitter taste, sialorrhea
Metabolic: Weight gain, edema.
Integumentary: Malignant melanoma (see also CONTRAINDICATIONS), flushing,
increased sweating, dark sweat, loss of hair.
Genitourinary: Urinary retention, urinary incontinence, dark urine,
priapism.
Miscellaneous: Faintness, hoarseness, malaise, hot flashes, sense of
stimulation, bizarre breathing patterns, neuroleptic malignant syndrome.
Mirapex
In the four double-blind, placebo-controlled trials of patients with
advanced Parkinson_s disease, the most commonly observed adverse events
(> 5%) that were numerically more frequent in the group treated with
MIRAPEX and concomitant levodopa were postural (orthostatic) hypotension,
dyskinesia, extrapyramidal syndrome, insomnia, dizziness, hallucinations,
accidental injury, dream abnormalities, confusion, constipation ,
asthenia, somnolence, dystonia, gait abnormality, hypertonia, dry mouth,
amnesia, and urinary frequency.
Approximately 12% of 260 patients with advanced Parkinson _s disease who
received MIRAPEX and concomitant levodopa in the double-blind, placebo-
controlled trials discontinued treatment due to adverse events compared
with 16% of 264 patients who received placebo and concomitant levodopa.
The events most commonly causing discontinuation of treatment were
related to the nervous system (hallucinations 12.7% on MIRAPEX vs 0.4% on
placebo]; dyskinesia [1.9% on MIRAPEX vs 0.8% on placebo]; extrapyramidal
syndrome [1.5% on MIRAPEX vs 4.9% on placebo]; dizziness [1.2% on MIRAPEX
vs 1.5% on placebo]; confusion [1.2% on MIRAPEX vs 2.3% on placebo]); and
cardiovascular system (postural [orthostatic] hypotension [2.3% on
MIRAPEX vs 1.1% on placebo]).
Adverse-event incidence in controlled clinical studies in advanced
Parkinson_s disease: Table B lists treatment-emergent adverse events that
occurred in the double-blind, placebo-controlled studies in advanced
Parkinson_s disease that were reported by 1% of patients treated with
MIRAPEX and were numerically more frequent than in the placebo group. In
these studies, MIRAPEX or placebo was administered to patients who were
also receiving concomitant levodopa. Adverse events were usually mild or
moderate in intensity.
The prescriber should be aware that these figures cannot be used to
predict the incidence of adverse events in the course of usual medical
practice where patient characteristics and other factors differ from
those that prevailed in the clinical studies. Similarly, the cited
frequencies cannot be compared with figures obtained from other clinical
investigations involving different treatments, uses, and investigators.
However, the cited figures do provide the prescribing physician with some
basis for estimating the relative contribution of drug and nondrug
factors to the adverse-events incidence rate in the population studied.
Other events reported by 1% or more of patients with advanced Parkinson_s
disease and treated with MIRAPEX but reported equally or more frequently
in the placebo group were nausea, pain, infection, headache, depression,
tremor, hypokinesia, anorexia, back pain, dyspepsia, flatulence, ataxia,
flu syndrome, sinusitis, diarrhea, myalgia, abdominal pain, anxiety,
rash, paresthesia, hypertension, increased saliva, tooth disorder,
apathy, hypotension, sweating, vasodilation, vomiting, increased cough,
nervousness, pruritus, hypesthesia, neck pain, syncope, arthralgia,
dysphagia, palpitations, pharyngitis, vertigo, leg cramps,
conjunctivitis, and lacrimation disorders.
Adverse Events
Relationship to Age, Gender, and Race: Among the treatment-emergent
adverse events in patients treated with MIRAPEX, hallucination appeared
to exhibit a positive relationship to age. No gender-related differences
were observed. Only a small percentage (4%) of patients enrolled were non-
Caucasian, therefore an evaluation of adverse events related to race is
not possible.
Other Adverse Events Observed During All Phase 2 and 3 Clinical Trials:
MIRAPEX has been administered to 1408 individuals during all clinical
trials (Parkinson_s disease and other patient populations), 648 of whom
were in seven double-blind , placebo-controlled Parkinson_s disease
trials. During these trials, all adverse events were recorded by the
clinical investigators using terminology of their own choosing. To
provide a meaningful estimate of the proportion of individuals having
adverse events, similar types of events were grouped into a smaller
number of standardized categories using modified COSTART dictionary
terminology. These categories are used in the listing below. The events
listed below occurred in less than 1% of the 1408 individuals exposed to
MIRAPEX and occurred on at least two occasions (on one occasion if the
event was serious). All reported events, except those already listed
above, are included, without regard to determination of a causal
relationship to MIRAPEX.
Events are listed within body-system categories in order of decreasing
frequency.
Body as a whole: enlarged abdomen, death, fever, suicide attempt.
Cardiovascular system: peripheral vascular disease, myocardial
infarction, angina pectoris, atrial fibrillation, heart failure,
arrhythmia, atrial arrhythmia, pulmonary embolism.
Digestive system: thirst.
Musculoskeletal system: joint disorder, myasthenia.
Nervous system: agitation, CNS stimulation, hyperkinesia, psychosis,
convulsions.
Respiratory system: pneumonia.
Special senses: cataract, eye disorder, glaucoma.
Urogenital system: dysuria, abnormal ejaculation, prostate cancer,
hematuria, prostate disorder.
Neurontin
The most commonly observed adverse events associated with the use of
gabapentin in combination with other antiepileptic drugs, not seen at an
equivalent frequency among placebo-treated patients, were somnolence,
dizziness, ataxia, fatigue and nystagmus.
Other Events in More Than 1% of Patients But Equally or More Frequent in
the Placebo Group Included: Headache, viral infection, fever, nausea
and/or vomiting, abdominal pain, diarrhea, convulsions, confusion,
insomnia, emotional lability, rash, acne.
Among the treatment-emergent adverse events occurring at an incidence of
at least 10% of gabapentin-treated patients, somnolence and ataxia
appeared to exhibit a positive dose-response relationship.
The overall incidence of adverse events and the types of adverse events
seen were similar among men and women treated with gabapentin. The
incidence of adverse events increased slightly with increasing age in
patients treated with either gabapentin or placebo. Because only 3% of
patients (28/921) in placebo-controlled studies were identified as
nonwhite (black or other), there are insufficient data to support a
statement regarding the distribution of adverse events by race.
Other Adverse Events Observed During All Clinical Trials
Gabapentin has been administered to 2074 individuals during all clinical
trials, only some of which were placebo-controlled. During these trials,
all adverse events were recorded by the clinical investigators using
terminology of their own choosing. To provide a meaningful estimate of
the proportion of individuals having adverse events, similar types of
events were grouped into a smaller number of standardized categories
using modified COSTART dictionary terminology. These categories are used
in the listing below. The frequencies presented represent the proportion
of the 2074 individuals exposed to gabapentin who experienced an event of
the type cited on at least one occasion while receiving gabapentin. All
reported events are included except those already listed in Table A,
those too general to be informative, and those not reasonably associated
with the use of the drug.
Events are further classified within body system categories and
enumerated in order of decreasing frequency using the following
definitions: frequent adverse events are defined as those occurring in at
least 1/100 patients; infrequent adverse events are those occuring in
1/100 to 1/1000 patients; rare events are those occurring in fewer than
1/1000 patients.
Body as a Whole: Frequent: Asthenia, malaise, face edema; Infrequent:
Allergy, generalized edema, weight decrease, chill; Rare: Strange
feelings, lassitude, alcohol intolerance, hangover effect.
Cardiovascular System: Frequent: Hypertension; Infrequent: Hypotension,
angina pectoris, peripheral vascular disorder, palpitation, tachycardia,
migraine, murmur; Rare: Atrial fibrillation, heart failure,
thrombophlebitis, deep thrombophlebitis, myocardial infarction,
cerebrovascular accident, pulmonary thrombosis, ventricular
extrasystoles, bradycardia, premature atrial contraction, pericardial
rub, heart block, pulmonary embolus, hyperlipidemia,
hypercholesterolemia, pericardial effusion, pericarditis.
Digestive System: Frequent: Anorexia, flatulence, gingivitis; Infrequent:
Glossitis, gum hemorrhage, thirst, stomatitis, increased salivation,
gastroenteritis, hemorrhoids, bloody stools, fecal incontinence,
hepatomegaly; Rare: Dysphagia, eructation, pancreatitis, peptic ulcer,
colitis, blisters in mouth, tooth discolor, perleche, salivary gland
enlarged, lip hemorrhage, esophagitis, hiatal hernia, hematemesis,
proctitis, irritable bowel syndrome, rectal hemorrhage, esophageal spasm.
Endocrine System: Rare: Hyperthyroid, hypothyroid, goiter, hypoestrogen,
ovarian failure, epididymitis, swollen testicle, cushingoid appearance.
Hematologic and Lymphatic System: Frequent: Purpura most often described
as bruises resulting from physical trauma; Infrequent: Anemia,
thrombocytopenia, lymphadenopathy; Rare: WBC count increased,
lymphocytosis, non-Hodgkin's lymphoma, bleeding time increased.
Musculoskeletal System: Frequent: Arthralgia; Infrequent: Tendinitis,
arthritis, joint stiffness, joint swelling, positive Romberg test; Rare:
Costochondritis, osteoporosis, bursitis, contracture.
Nervous System: Frequent: Vertigo, hyperkinesia, paresthesia, decreased
or absent reflexes, increased reflexes, anxiety, hostility; Infrequent:
CNS tumors, syncope, dreaming abnormal, aphasia, hypesthesia,
intracranial hemorrhage, hypotonia, dysesthesia, paresis, dystonia,
hemiplegia, facial paralysis, stupor, cerebellar dysfunction, positive
Babinski sign, decreased position sense, subdural hematoma, apathy,
hallucination, decrease or loss of libido, agitation, paranoia,
depersonalization, euphoria, feeling high, doped-up sensation, suicidal,
psychosis; Rare: Choreoathetosis, orofacial dyskinesia, encephalopathy,
nerve palsy, personality disorder, increased libido, subdued temperament,
apraxia, fine motor control disorder, meningismus, local myoclonus,
hyperesthesia, hypokinesia, mania, neurosis, hysteria, antisocial
reaction, suicide gesture.
Respiratory System: Frequent: Pneumonia; Infrequent: Epistaxis, dyspnea,
apnea; Rare: Mucositis, aspiration pneumonia, hyperventilation, hiccup,
laryngitis, nasal obstruction, snoring, bronchospasm, hypoventilation,
lung edema.
Dermatological: Infrequent: Alopecia, eczema, dry skin, increased
sweating, urticaria, hirsutism, seborrhea, cyst, herpes simplex; Rare:
Herpes zoster, skin discolor, skin papules, photosensitive reaction, leg
ulcer, scalp seborrhea, psoriasis, desquamation, maceration, skin
nodules, subcutaneous nodule, melanosis, skin necrosis, local swelling.
Urogenital System: Infrequent: Hematuria, dysuria, urination frequency,
cystitis, urinary retention, urinary incontinence, vaginal hemorrhage,
amenorrhea, dysmenorrhea, menorrhagia, breast cancer, unable to climax,
ejaculation abnormal; Rare: Kidney pain, leukorrhea, pruritus genital,
renal stone, acute renal failure, anuria, glycosuria, nephrosis,
nocturia, pyuria, urination urgency, vaginal pain, breast pain, testicle
pain.
Special Senses: Frequent: Abnormal vision; Infrequent: Cataract,
conjunctivitis, eyes dry, eye pain, visual field defect, photophobia,
bilateral or unilateral ptosis, eye hemorrhage, hordeolum, hearing loss,
earache, tinnitus, inner ear infection, otitis, taste loss, unusual
taste, eye twitching, ear fullness; Rare: Eye itching, abnormal
accommodation, perforated ear drum, sensitivity to noise, eye focusing
problem, watery eyes, retinopathy, glaucoma, iritis, corneal disorders,
lacrimal dysfunction, degenerative eye changes, blindness, retinal
degeneration, miosis, chorioretinitis, strabismus, eustachian tube
dysfunction, labyrinthitis, otitis externa, odd smell.
Postmarketing and Other Experience
In addition to the adverse experiences reported during clinical testing
of gabapentin, the following adverse experiences have been reported in
patients receiving marketed gabapentin. These adverse experiences have
not been listed above and data are insufficient to support an estimate of
their incidence or to establish causation. The listing is alphabetized:
angioedema, blood glucose fluctuation, erythema multiforme, elevated
liver function tests, fever, jaundice, Stevens-Johnson syndrome.
Topamax
The most commonly observed adverse events associated with the use of
topiramate at dosages of 200 to 400 mg/day in controlled trials, that
were seen at greater frequency in topiramate-treated patients and did not
appear to be dose-related were: somnolence, dizziness, ataxia, speech
disorders, and related speech problems, psychomotor slowing, nystagmus,
and paresthesia [see Table D]. The most common dose related adverse
events at dosages of 200 to 1,000 mg/day were: fatigue, nervousness,
difficulty with concentration or attention, confusion, depression,
anorexia, language problems, anxiety, mood problems, cognitive problems
not otherwise specified, weight decreased, and tremor [see Table E].
In controlled, clinical trials 11 of patients receiving topiramate 200 to
400 mg/day as adjunctive therapy discontinued due to adverse events. This
rate appeared to increase at dosages above 400 mg/day. Adverse events
associated with discontinuing therapy included somnolence, dizziness,
anxiety, difficulty with concentration or attention, fatigue, and
paresthesia and increased at dosages above 400 mg/day.
Approximately 28% of the 1,715 individuals with epilepsy who received
topiramate at dosages of 200 to 1,600 mg/day in clinical studies
discontinued treatment because of adverse events; an individual patient
could have reported more than one adverse event. These adverse events
were: psychomotor slowing (4.1%), difficulty with memory (3.3%), fatigue
(3.3%), confusion (3.2%), somnolence (3.2%), difficulty with
concentration attention (2.9%), anorexia (2.9%), depression (2.6%),
dizziness (2.6%), weight decrease (2.5%), nervousness (2.2%), ataxia
(2.2%), paresthesia (2.0%), and language problems (2.0%).
Incidence in Controlled Clinical Trials - Add-On Therapy: Table D lists
treatment-emergent adverse events that occurred in at least 1% of
patients treated with 200 to 400 mg/day topiramate in controlled trials
that were numerically more common at this dose than in the patients
treated with placebo. In general, most patients who experienced adverse
events during the first eight weeks of these trials no longer experienced
them by their last visit.
The prescriber should be aware that these data were obtained when
TOPAMAX® was added to concurrent antiepileptic drug therapy and cannot be
used to predict the frequency of adverse events in the course of usual
medical practice where patient characteristics and other factors may
differ from those prevailing during clinical studies. Similarly, the
cited frequencies cannot be directly compared with data obtained from
other clinical investigations involving different treatments, uses, or
investigators. Inspection of these frequencies however does provide the
prescribing physician with a basis to estimate the relative contribution
of drug and non drug factors to the adverse event incidences in the
population studied.
Other Adverse Events Observed
Other events that occurred in more than 1% of patients treated with 200
to 400 mg of topiramate in placebo-controlled trials but with equal or
greater frequency in the placebo group were: fatigue, headache, injury,
anxiety, rash, pain, convulsions aggravated, coughing, gastroenteritis,
rhinitis, back pain, hot flushes, bronchitis, abnormal gait, involuntary
muscle contractions, and epistaxis.
Other Adverse Events Observed During All Clinical Trials
Topiramate, initiated as adjunctive therapy, has been administered to
1,715 patients with epilepsy during all clinical studies. During these
studies, all adverse events were recorded by the clinical investigators
using terminology of their own choosing. To provide a meaningful estimate
of the proportion of individuals having adverse events similar types of
events were grouped into a smaller number of standardized categories
using modified WHOART dictionary terminology. The frequencies presented
represent the proportion of 1,715 topiramate-treated patients who
experienced an event of the type cited on at least one occasion while
receiving topiramate. Reported events are included except those already
listed in the previous table, those too general to be informative, and
those not reasonably associated with the use of the drug.
Events are classified within body system categories and enumerated in
order of decreasing frequency using the following definitions: frequent
occurring in at least 1/100 patients; infrequent occurring in 1/100 to
1/1000 patients; rare occurring in fewer than 1/1000 patients
Autonomic Nervous System Disorders: Infrequent: vasodilation
Body as a Whole: Frequent: fatigue, fever, malaise. Infrequent: syncope,
halitosis, abdomen enlarged. Rare: alcohol intolerance, substernal chest
pain, sudden death.
Cardiovascular Disorders, General: Infrequent: hypertension, hypotension,
postural hypotension.
Central Peripheral Nervous System Disorders: Frequent: hypokinesia,
vertigo, stupor, convulsions grand mal, hyperkinesea, hypertonia.
Infrequent: leg cramps, hyporeflexia, neuropathy, migraine, apraxia,
hyperaesthesia, dyskinesia, hyperreflexia, dysphonia, scotoma ptosis,
dystonia, visual field defect, coma, encephalopathy, fecal incontinence,
upper motor neuron lesion. Rare: cerebellar syndrome, EEG abnormal,
tongue paralysis.
Endocrine Disorders: Infrequent: goiter. Rare: thyroid disorder.
Gastrointestinal System Disorders: Frequent: diarrhea, vomiting,
flatulence, gastroenteritis. Infrequent: gum hyperplasia, hemorrhoids,
tooth caries, stomatitis, dysphagia, melena, gastritis, saliva increased,
hiccough, gastroesophageal reflux, tongue edema, esophagitis.
Rare:eructation.
Hearing and Vestibular Disorders: Frequent: tinnitus. Rare: earache,
hyperacusis.
Heart Rate and Rhythm Disorders: Frequent: palpitation. Infrequent: AV
block, bradycardia, bundle branch block. Rare: arrhythmia, arrhythmia
atrial, fibrillation atrial.
Liver and Biliary System Disorders: Infrequent: SGPT increased, SGOT
increased, gall bladder disorder. Rare: gamma-GT increased.
Metabolic and Nutritional Disorders: Frequent: weight increase.
Infrequent: thirst, hypokalemia, alkaline phosphatase increased,
dehydration, hypocalcemia, hyperlipemia, acidosis, hyperglycemia,
creatinine increased, hyperchloremia, xerophthalmia. Rare: diabetes
mellitus, hypernatremia, abnormal serum folate, hyponatremia,
hypocholesterolemia, hypoglycemia, hypophosphatemia.
Musculoskeletal System Disorders: Frequent: arthralgia, muscle weakness.
Infrequent: arthrosis, osteoporosis.
Myo Endo Pericardial Valve Disorders: Infrequent: angina pectoris.
Neoplasms: Infrequent: basal cell carcinoma, thrombocythemia. Rare:
polycythemia.
Platelet Bleeding and Clotting Disorders: Infrequent: gingival bleeding,
purpura, thrombocytopenia, pulmonary embolism.
Psychiatric Disorders: Frequent: insomnia, personality disorder,
impotence, hallucination, euphoria, psychosis, libido decreased, suicide
attempt. Infrequent: paranoid reaction, appetite increased, delusion
paranoia, delirium, abnormal dreaming, neurosis. Rare: libido increased,
manic reaction.
Red Blood Cell Disorders: Frequent: anemia. Rare: marrow depression,
pancytopenia.
Reproductive Disorders Female: Frequent: intermenstrual bleeding,
leukorrhea, menorrhagia, vaginitis, amenorrhea.
Reproductive Disorders Male: Infrequent: ejaculation disorder, breast
discharge.
Respiratory System Disorders: Frequent: coughing, bronchitis. Infrequent:
asthma. bronchospasm. Rare: laryngismus.
Skin and Appendages Disorders: Frequent: acne, alopecia. Infrequent:
dermatitis, nail disorder, folliculitis, dry skin, urticaria, skin
discoloration, eczema, photosensitivity reaction, erythematous rash,
seborrhoea, sweating decreased, abnormal hair texture. Rare: chloasma.
Special Senses Other Disorders: Frequent: taste perversion. Infrequent:
taste loss, parosmia
Urinary System Disorders: Frequent: urinary tract infection, micturition
frequency, urinary incontinence, dysuria, renal calculus. Infrequent:
urinary retention, face edema, renal pain, nocturia, albuminuria,
polyuria, oliguria.
Vascular Extracardiac Disorders: Infrequent: flushing, deep vein
thrombosis, phlebitis. Rare: vasospasm.
Vision Disorders: Frequent: conjunctivitis. Infrequent: abnormal
accommodation, photophobia, abnormal lacrimation, strabismus, color
blindness, myopia, mydriasis. Rare: cataract, corneal opacity, iritis.
White Cell and Reticuloendothelial System Disorders: Infrequent:
lymphadenopathy, eosinophilia, lymphopenia, granulocytopenia,
lymphocytosis.
Comtan
The most commonly observed adverse events (>5%) in the double-blind,
placebo-controlled trials (N=1003) associated with the use of C.M.A. and
not seen at an equivalent frequency among the placebo-treated patients
were: dyskinesia/hyperkinesia, nausea, urine discoloration, diarrhea, and
abdominal pain.
Approximately 14% of the 603 patients given entacapone in the double-
blind, placebo-controlled trials discontinued treatment due to adverse
events compared to 9 % of the 400 patients who received placebo. The most
frequent causes of discontinuation in decreasing order are: psychiatric
reasons (2% vs. 1%), diarrhea (2% vs. 0%), dyskinesia/hyperkinesia (2%
vs. 1%), nausea (2% vs. 1%), abdominal pain (1% vs. 0%), and aggravation
of Parkinson_s Disease symptoms (1% vs. 1%).
Adverse Event Incidence in Controlled Clinical Studies
Table D lists treatment emergent adverse events that occurred in at least
1% of patients treated with entacapone participating in the double-blind,
placebo-controlled studies and that were numerically more common in the
entacapone group, compared to placebo. In these studies, either
entacapone or placebo was added to levodopa/carbidopa (or
levodopa/benserazide).
Table D.
Benedryl
General: Urticaria, drug rash, anaphylactic shock, photosensitivity,
excessive perspiration, chills, dryness of mouth, nose, and throat
Cardiovascular System: Hypotension, headache, palpitations, tachycardia,
extrasystoles
Hematologic System: Hemolytic anemia, thrombocytopenia, agranulocytosis
Nervous System: Sedation, sleepiness, dizziness, disturbed coordination ,
fatigue, confusion, restlessness, excitation, nervousness, tremor,
irritability, insomnia, euphoria, paresthesia, blurred vision, diplopia,
vertigo, tinnitus, acute labyrinthitis, neuritis, convulsions
GI System: Epigastric distress , anorexia, nausea, vomiting, diarrhea,
constipation
GU System: Urinary frequency, difficult urination, urinary retention,
early menses
Respiratory System: Thickening of bronchial secretions, tightness of
chest and wheezing, nasal stuffiness
I strongly recommend that any one reading who may have had a brain injury
to be acutely aware of these side effects and keep note if you are
experiencing any of them...
Life can be wonderful, sometimes you have to walk through the thorns to
find the beutiful fragrence of the roses.
Saturday, August 23, 2003
My stimulators got turned off somehow yesterday. Maybe even the day
before. Probably my sub woofer. I am supposed to avoid magnets. I was
having some weird downs. Not as hard as they used to be, thats for
sure... at least not physically wise. It seeemed like the depression was
MUCH worse. I felt something strange after taking my meds. Not like the
usual reaction i am used to. This was as though the body knew a foreign
object was in it, and it was in the way of processing the meds correctly.
Very hard to explain.
I also felt more foggy than the down times i had pre dbs. As though a
blanket had been put over my ability to make sense of things. Except the
anxiety was much worse. Could NOT sleep. It reached a point last night
where I felt like screaming Jim came in with my little remote control to
check if I was turned on. I wasnt... He clicked the buttons... wow.
IMMEDICATE voltage went through me. My left leg flew around in the bed,
my left arm went berserk. The dog ran for cover. THen came the right...
aaaaahhhhh. Then... the fog lifted. I became so giddy I laughed. no, not
just laughed... chortled...heehee.Then, i relaxed and went to sleep.
That was at about 11:00 last night. It is now 8:00 am . I woke up about
an hour ago... refreshed.. Still no meds yet. But, I am beginning to feel
that twinge telling me they are due.I actually slept through the night
without waking up for meds! Thank you Lord.
I am going to go take my meds now...and go back to bed.
Friday, August 22, 2003
The Seed
In the light,
where do you stand?
In the dark,
where do you go?
The time is right
I need to have plans
I have a seed
To plant and to grow
TIme is rare
to capture and hold
I have no choice
I have to be bold
My second winds
are far in between
The moving trains
making off with my dreams
Look at me
see who I am
Look at me
and the life in my eyes
Humility
is a precious diamond
That I have earned
and I wear no disguise
I know where I must go
My feet alreay have found the road
It is my destiny
Are you ready to accompany me?
In the light,
where do you stand?
In the dark,
where do you go?
The time is right
for making new plans
I have a seed
to plant and to grow
Laura J Dean
Thursday, August 21, 2003
I truly think that things happen according to Gods plan. No matter if we
want to use our will or not, ultimately, it is His will that has to be
done. When we attempt to use our will and it is contradicting to His
will, it backfires ... somewhere down the road. Maybe right away, maybe
in a year or two, maybe a decade or two. It will happen though, and then
we will be able to see the glory in how His will yields so much more for
us than ours ever could have.
One of these lessons came to my mind as I looked though my huge box of
pics. My middle daughter and I have been feuding, again, and I do that
to remind myself of when she was little and oh... so cute. She is now
26. In the box was a picture staring out at me of when she was about 3
years old, no hair.. and a very puffy face. It was right around
Christmas time, and she had the smile that always lights on a childs face
this time of year, but her eyes were very tired looking. This brought
tears along with memories back to me about one of the hardest things I
have ever gone through.
I was raised in a very well to do home. I did not lack anything and had
no knowledge of being poor. But, it was full of turmoil and I left home
when I became pregnant and married the father at age 16. Needless to
say, the marriage did not work out, and I ended up leaving him at the age
of 21 after 5 years of marriage and 2 daughters. I was just barely
separated when my cousin came visiting from St. Paul. I really felt like
I needed to leave the area for awhile, and he said that I could come stay
with him until I found a place.. so I sold what I could, packed up my
kids, my dog, and all I could fit into a 1972 dodge dart and we drove off
to begin a new live in Minnesota.
Since my husband had a good paying job, I still had no idea of what it
meant to be to be without, at least without material possessions. And,
the thought of going without ANYTHING actually scared me to death. I had
married so young, I did not complete highschool, and had only had one job
at Guitar Center, not enough to support myself and 2 children. I made a
decision. In order to secure a future for my kids, and myself I would put
them in a foster home temporarily until I had enough education to pay our
way. This was the only way I could see doing it. Welfare was not even a
possibility. There was no way I was going to be poor. No way.
I stayed with my cousin for a week, and with the little money I had,
found a small apt. Then I made an appointment for the following week with
a foster home which was located only a few miles away. I decided I would
tell the kids the day before I took them because it was very hard on me,
and I knew it would be even harder on them. I went over and over in my
mind what I would say. I watched them sleep, and kept trying to convince
myself it was the best thing to do. It was for them. This is what a good
mother would do..
God had different plans.
Two days before the appointment at the foster home, I was brushing my 2-½
year old daughter’s hair. This had become a difficult ritual because
since she was a baby, she had this horrible skin problem on her head that
no skin doctor had been able to diagnose. Her scalp was very sensitive,
and it pained her when I brushed it. Then, suddenly I found a huge lump
behind her left ear. HUGE. It actually pushed her ear away from her head!
I had no idea of any good doctors so I decided to get out a phonebook and
look for one close by. The first one I called got me in right away. This
is where I begin seeing the beauty of Gods will taking over. I brought my
daughter in and they took x-rays. Then, I waited in the waiting room. For
a very long time. The nurse came out and called us back into the doctor’s
office. What they showed me made my jaw drop. My daughter’s x-rays showed
3 lesions.. or holes in her skull.. My little baby!
The nurse had told me she had just come from a symposium given by a
specialist on a very rare blood cancer. Histiocytosis x. I looked at her
with the deer in the headlights expression. She went on to say that there
were only 2 specialists on this disease in the United States, and one was
practicing in Minneapolis. My daughters scalp rash and lesions showed
evidence of it, and now.. a tumor. They sent me over to the specialist
where exploratory surgery showed evidence of the disease. Suddenly, my
daughter began chemotherapy and was given less than 50 percent chance of
survival.
This was completely unreal. I went home and called my mom, crying. My
baby... my baby! Mom helped me to collect myself and think.
I went down to the local welfare office. I needed food, money, and most
important, medical. I had my oldest daughter with me and before it would
have scared me to death to see all of these people and their children
that were obviously very poor. I looked at my daughter, took her hand..
and got in line. That was that. We were welfare recipients. My youngest
lay in the hospital possibly dying. Nothing else mattered to me.. nothing.
That was the beginning of over a year and a half of the chemical
treatments. There were times that I thought I was losing it. I think I
came very close to having a nervous breakdown. I drank, which didn’t
help, so I would go into my daughter’s room and look at them.I would lay
my head on their beds and cry until I became exhausted. I had to be
strong while they were awake. I broke down while they slept.
They put my daughter on prednazone, and it seemed to stabilize her,
although she puffed way out in the face. They decided to wean her off.
After she was weaned off, I asked it I could move back to Seattle so I
could be near my family. They said she had been responding well enough to
the treatment and saw no problem in the move. Actually, my daughter
seemed to be doing very well. The docs announced she was in remission.
We weren’t back long when I began to notice that my daughters thirst had
become unquenchable. She would drink... and drink.. and drink. Soon, it
came to the point that she would drink while she sat on the toilet and
peed it right back out. She was 4 at this time. I had an appointment at
the Children’s Hospital in Seattle for a follow up exam from her chemo
treatments. I told them there about her drinking problem not expecting
anything very serious. They did blood work. The cancer was back. Out of
remission. It was attacking her pituitary gland with full force. She was
started on radiation treatments and again, given less than 50% chance of
survival.
She had 6 months of radiation until finally.. FINALLY.. all of the cancer
was gone. It had destroyed part of the pituitary gland, which caused
diabetes insipidus. Her growth would be stunted capping her height at
4’7” as an adult. She became deaf in her ear which the tumor sat behind
from scar tissue. She had a learning disability.. but she was alive! SHE
WAS ALIVE! My baby was alive!!
I forgot about vanity. I forgot about money. I forgot about foster
homes.I forgot about all of the trivial things that were not important in
life. My daughter came first. God showed me what was important. He spared
my daughter, and showed me how to love her.
There is another thing God does. He reminds us of His love.. I am blessed
to still have my daughter, and I am going to call her and make amends.
Thank you Lord.
Monday, August 18, 2003
Patience.. what a hard thing to learn, and one thing I have found out you
never, EVER want to pray for because there is only one way to learn it.
That is by going through so many things that you HAVE to learn it. You
have no choice in the matter. Either you figure out what patience is, or
you keep getting more piled on your plate until it runneth over. If you
dont get it by that time ,the end result could be a complete mess and YOU
have to clean it up anyway. God will always be by our side, and will help
any time we need Him to.
Wouldn't it be easier if we would say from the beginning, "God, I cant do
this, Can you please take over for me?" Ahhh yes,, the difficult lesson of
patience.
I have such a tough time with patience. Nothing is harder for the parkie
mind than trying to stand in line at a bank, wait for a doctors
appointment, or being put on hold on the phone listening to horrible
muzak. (or really bad reproductions of what at one time was real music.)
Since I am running low on brain cells anyway, I refuse to expose the ones
I have left to stuff my dog wouldn't even howl to. Scuse me, Im a musician.
Every time I go through some little adversity, my mind screams...
AARRGGGHH, then my body goes nuts. Afterwards, my family is left picking
up the pieces. They have learned to be very quiet in their ponderings of
what possibly could have set mom off. They are close to graduating magna
cum laude in patience with the patient.. and actually, I am very proud of
them for it.
God is amazing. He must have one sense of humor. I cant imagine doing what
He does without having to chuckle once in awhile. I dont tv or movies, but
what would get my attention would be a bad reality show starring the Brady
Bunch, the crew from Dynasty and Melrose Place and stick it on the
Titanic. I can turn off the tv as the ship goes down.. its a good thing
God doesnt.
Sorry, it has been one of those decades.. Time for reflection.. and time
to laugh.
I may not seem to be in a serious mood as I write this. Actually, laughter
can be quite seriously good for the soul. I think when I got a huge scar
across the top of my noggin, I decided that less lines anywhere on my body
would be good. Especially those created by stress that could have been
prevented by giving it to God.
There is one area in my life lately that I have found helps me
automatically find patience without having to pray for it. That is in the
area of having faith. Thats it. Just having faith. Every time I seem to
loose even just a tad of it, my plate fills up, I fall under its
weight..and finally, pray for patience. God will teach me.. but, I think I
will listen a little bit closer for His voice instead of the Brady Bunch
singing that awful musak.
Friday, August 15, 2003
Thank God for music.
Today I work on some songs that have been put on the back burner of my
hard drive. I have a wonderful program called Cakewalk that allows you to
compose music right on your computer. You can do so by either putting
notes on the staffs with a click of the mouse, or by hooking up a midi
instrument directly into your computer and playing it. The program then
arranges each note you play right on the staffs automatically!!! How cool
is that! You can then change the instrument sound to whatever is in the
program. These sounds range from the dulcimer to synthetic voices. You
can even put in drums if you want. Way cool. I have a Yamaha 88 key,
which I love. It sits right here on top of my computer desk. I also am
surrounded by a 7-speaker surround sound system. I blow the windows out
of the house, and with this huge magnet in my huge subwoofer, am turning
off my stimulators regularly... oops.
My grandma taught me how to play the piano at the age of 5. I was her
little protege. She lived in our basement, and I would go down every day
to listen to her, and then have my lesson. She had many other students
and would give huge recitals in halls she rented out. Me being her
granddaughter meant I was to be the first one on stage. This scared the
begeebees out of me, and still to this day hate playing in front of a lot
of people. I was taught classical. By the time I hit sixth grade, I was
playing Beethoven, Mozart, Chopin, , Brahms, and my all time favorite..
Bach.
In the ninth grade the school district gave a music theory test to all
high schoolers. It consisted of 6 tests that covered every area possible
in music theory. There were 99 questions in each test. I was the highest
score in the entire district. My scores were.. 99, 99, 99, 98, 97, 96.
And I was only in the ninth grade! My teacher brought me in front of the
class and I was applauded... heehee.. Made me feel pretty good.
When I was probably around 13 years old, I began composing my own music.
It began with a simple little piece that was all done in sevenths.
G7,F7,C7. That was it.. But, I was hooked I began working on more and
more songs of my own getting more and more daring with each piece. It was
as though a challenge to myself to see how complex I could make them. I
sit down now and try to play some and they are completely gone to me.
But, that’s ok. I have more in my mind to replace where they came from. I
even composed a couple of classical pieces that of course mimic Bach. I
play my songs for Mom and it doesn’t matter if they have synthesized
sounds, Celtic sounds, or boogie woogie.. when they are done playing I
look at her, and she always says the same... “It sounds like Bach.”
I played in a few bands, did mainly copy material. What I really had fun
at was when I got a job working at Guitar Center downtown Seattle when I
had just turned 20. I was married with 2 daughters, and the atmosphere
there was pretty wild, but I kept myself in tune with the music... pardon
the pun. It was in the late 70s and women were still being put behind the
accessory counter. Since we were only being paid straight commission with
no base pay, I knew it was ridiculous to try to make any kind of living
selling just guitar strings and wah boxes. I approached the boss about
giving me a chance on the floor. He did and I was the third highest sales
person the next month. YAY! I loved it.. I had the keyboard section with
a baby grand electric piano and Roland Jupiter 4 synthesizers. Oh man. I
was in heaven! There were many times that we had jam sessions when it was
slow. People would come in off of the street and dance in the store. I
loved working there, but only stayed a year. When I turned 21, I had to
move along.
Not long ago.. , I began having serious problems with my PD. The sinemet
alone wasn’t working as well, and I could barely play. I gave it up for a
long time and became very depressed. I wrote this poem then...
Forgotten Melody
A vision of twilight’s shadow
meanders leisurely across the walls of my home.
It forges near my forsaken piano
to challenge my denial of its existence.
My heart begins to bleed
as reality's blanket threatens to mute
the music of my soul
In the silenced room,
I gaze upon the majestic instrument.
Spider webs now cover keys
once used to vocalize emotions
that could not be else told.
I can feel my life within its sounding board.
Emotional strokes of my fingertips
echo within the dark wood
I sit upon the vacated bench,
The familiar creak of weakened legs
welcome my return.
My fingers caress the ivories
but do not press down on them.
The knowledge of sad frustrations
has been hidden behind a wall
stronger than dreams of longing.
Looking down,
I notice how young my hands look.
Too young to be holding
the pain of Parkinson’s Disease.
But, the keys that lie underneath
do not understand
and are waiting for my touch.
I bow my head
and pray
Inside of my trapped frame,
Gods gentle voice begins to sing
the melodies I used to play.
Leaning into their healing crescendos,
my motionless hands are forgiven.
My dignity swoons and gives thanks
while my Lord fills my heart
with the music He has given me.
©Laura Jeanne Dean
My neuro then put me on the med Mirapex and it worked immediately...
voila! I could play again! Not like I used to, but it was still there.
It was wonderful!
Even if it reaches the point where I cannot point my computer mouse and
click notes on a staff, or sing a melody... I will always be a musician.
God has blessed me with this.
Thursday, August 14, 2003
I have been asked many times how I became a Christian. I like to tell the
story, because it is necessary at times in my life to remember it. And to
remember Him. Especially when I get wrapped up in the world and all of
the struggles that surround me.
When I left my first husband, I was 21. I had 2 kids, and it wasn’t long
before I became involved with bikers. I loved the harsh life. The
brotherhood/sisterhood was one I didn’t receive at home. The price to pay
in the involvement of being part of a one-percenter world was well worth
it in my opinion at the time. One- percent bikers are the clubs. Such as
Hells Angels, etc. The term one percenters came about when a guy wrote an
article for a newspaper sometime in the 50s when movies such as Cycle
Phycho came out portraying the people who rode Harleys as all being
lunatics. The journalist went on to say that ninety nine percent of
people who rode were just motorcycle enthusiasts. It was that “one
percent” that you had to worry about. SO, the clubs took that and ran
with it. They were the “one percent” you had to look out for. And,
believe me, some of what I have seen will testify to that.
It was not easy being a woman in that world. You really had to know what
you were doing, or you could get hurt. Badly. You had to know what to
say, and when to say it. Clubs have many bilaws and unwritten rules. One
being that women came below the club, below the brotherhood, below the
motorcycle on the priority list. It was imperative you knew how to act. I
was respected. But, I was still a woman. I could not ride my own bike,
but I did get their protection. Which was something I really felt I
needed. I grew up in a very dysfunctional world. Having that type of
protection and hanging around other brothers and sisters that didn’t know
how else to love felt comfortable to me. I could have my huge wall, carry
the huge chip on my shoulder, and dare anyone to knock it off without
worrying about it. Actually, the harsher I was, the more respect I
gained. This was great, because it was all I knew how to do.
I found myself heavily emerged in the world of drugs, booze and bikes.
and living in a biker house with my 2 kids. There was no hope for me in
my mind. I had not even a GED, and had been on welfare for quite some
time. , all of the training programs had been cut, and I felt completely
stuck. I drank more and more.. and began other drugs. My body was going
through something I could not understand, and drinking also helped ease
that. It was all I knew, and I could not see any light anywhere. All I
had was my piano to keep some kind of sanity.
One day, a friend of mine called. A guy I had dated for awhile, years
before. We had parted our ways, and I had forgotten all about him. I had
moved several times since last talking to him, and I dot know how he
found me, but, the wall was up in full force when I answered the phone
and heard his voice.. He told me that he was now a Christian, and that he
felt the need to call me. I had my usual sarcasm in my voice, and came
back at him with some remark I am sure he didn’t deserve. He did not ask
me how my life had been, he did not ask me what I had been doing. What he
did ask me was that if he could pray for me. I reached over to hang up
the phone, but didn’t. Instead, I said... “sure.” Then proceeded to hold
the phone as far away from my head as I could. I stood there with my arm
outstretched for at least 10 minutes. I didn’t want to risk the
possibility of hearing any of that prayer. Then, I asked him if he was
done. He said yes.. I hung up the phone.
Only a couple of minutes went by after hanging up the phone, then I got
hit. Literally. Sent to my knees. As though the wind had been knocked out
of me. BAM! Then, everything cleared. My fog had lifted and let His
light in. I was giddy! I knew it was God. I dont know how I knew, I just
knew. And, I knew everything was going to be ok. I dont mean everything
such as my pockets filling with money, or prince charming would come
prancing into my life, or that I would be able to find the perfect job,
or stop drinking right away, There was no specific wrong that suddenly
was turned around... It would take alot of me undoing those wrongs...
but, now.. I knew that I could.. He would not let me down. He would show
me how to live. He would give me strength. I now had hope. I now knew I
could do it! The wall was crashing down around me, and I danced around in
the middle of it singing my praises to Him. I was saved!!!
That was 20 years ago. It took awhile to understand the Christian walk,
and believe me.. there are many of those neon cows being dropped on my
head... But boy, does it feel good replacing that chip on my shoulder
with His love in my heart.
Wednesday, August 13, 2003
I used to have an old ringer washing machine. I would put dirty clothes
in, and when they went through the ringer part, all life was squished out
of them, leaving them flat and shapeless. The residue of the soap was
many times still in the clothes too, because there was no way to empty
out the water and dunk them in fresh water before you rang them. Well, if
there was.. I sure didn’t know about it. Sometimes, I feel like my body
has been put through the ringer of the medical profession. I may have
started out with something wrong, but I have been squeezed through so
many times that there is very little life left in me. And the residue of
the meds has left a kind of permanent sticky sheen to my inner wall. What
a relief it is to find doctors who care.
I went into OHSU yesterday (Oregon Health and Science University Hosp).
I woke up the night before with pain in my side and having chills. I
reacted and called the neurosurgeons at midnight. They wanted to check me
out for infection. Thank God, it ended up just being discomfort and the
chills? Maybe withdrawal from the pain meds, maybe menopause, maybe,
maybe.... At any case. No infection. YAY! Plus! They turned on my
stimulators. I didn’t get dialed in yet, but I got to feel the little
buzzzzzzz of when the juice gets going. All I can say is... weird. I am
at a very low setting. Not even a 1. I think I am at a .5. They tried
putting it on 1, and my dyskenesias bounced all over. The eyebrows went
up, and the voltage went down. Then the laughs came out. At this rate, my
batteries won’t wear down for about 6 years... I am officially turned
on.. heehee.
I love the docs there. They are such a great team and make you feel like
family. If anyone is looking for a good place to have the dbs.. my
recommendation is Oregon Health and Science University Hospital in
Portland. The neurosurgeon is Kim Birchell. Absolutely fantastic. They
really care there, and talk to you in layman’s terms. Not over your head
like you get the feeling they are talking to hear themselves talk. They
make sure you understand fully everything that is happening.. And my
biggest credit to them? They take time with you. All of the time you want
or need. You are not hurried around so that they can get onto the next
client and make another dollar. Can you believe, when I went in
yesterday.. it was their day off and they came in. Just because I was. It
was even their suggestion I come in! None of this.. “well, see your local
neuro and we will see you when we are here.” I live a good 3-hour drive
away, and it would have been easy for them to say that. But, they wanted
to see me personally. You really feel like they LIKE what they are doing.
They LIKE seeing people feel better. They LIKE being docs. They are not
in it just for the money. What a neat thing to experience. I wanted to
hug each one of them.
When I sit down to write, I usually have decided on the topic the night
before. I did not intend on writing about this. But, God has lead me to,
so there must be a reason. Who knows? Maybe someone out there reading
this needs to find a good neurosurgeon. Maybe one of the docs will read
it. Maybe another doctor will read and know how valuable it is to have
the fantastic traits these guys possess. I dot know, and have learned a
long time ago not to question what my Lord is leading me to do.
.
To the docs at OHSU>>>
In your world there is a choice
To close your ears or hear my voice
The way I live is through your wisdom
What I hear from you is my reflection
With open eyes, you can really see
The entire picture that makes up “me”
I wonder if you can comprehend
The value this holds on how I mend.
In my world of living blind faith
You have helped with risks i take.
And when I saw your eyes shining
I knew you were part of Gods timing.
Thanks guys
Tuesday, August 12, 2003
When I was in my early 20s, I went on a train ride from Seattle to St.
Paul, Minn. Somewhere,a woman boarded the train and sat down next to me.
She was full of grief, and I sat quietly as she softly began to speak of
the passing of her husband.
Her husband had suffered a horrible decline in a long battle against a
degenerative disease. In the final years, the family could not longer
bear to see his suffering, or handle the demands that were made by the
physical aspects of the disease. An overwhelming sense of loss combined
with frustration and complete despair came from her face as her mouth
poured out the words that told of her family’s struggle. I felt so much
pain for this woman. I had no idea how to react, so I let her hold me as
she came to terms with what had happened. The man that she had loved had
wasted away in a slow, agonizing illness. And, she had to suffer so. It
did not seem fair. They decided to put him in a nursing home. The feeling
of guilt stemming from the decision was evident in this womans word. But,
even clearer was the bitterness left inside of her. She had hatred toward
this nightmare that took away her husband and father to her children...
Parkinsons Disease.
It was only a couple of years later that symptoms began with me. I began
having difficulty breathing. It was just a slight annoyance at first, but
soon it turned into hyperventilating... This went on for a couple of
years of being diagnosed with panic attacks and put on anti anxiety
drugs, the beginning of a nightmare of drugs and diagnoses that ranged
from epilepsy to stress from being a single working mother.
The rigidity came at about age 25. Slight, cumbersome.. it was difficult
to move. I was put on drugs that I dot even remember now the reason for.
They made me feel like a walking zombie. I was a single mother, trying
hard to get off of welfare...and working seemed impossible. I did my best
at a few jobs.. managed to get a ged... and drank.. alot..
The depression was overwhelming. Since I had the encephalitis, I noticed
it would attack me in waves. Out of the blue. Very hard depression. Being
a single mother who had some ailment in my body that no doctor seemed to
be able to define made booze my only solace. That and bikers. . I decided
there was no way I could be responsible with what my body was doing, so
why bother... why not enjoy.. or at least forget? The wall came up.. and
it was very, very thick. Then I found God.
That was the end of the horrible, lost days. Now, I was able to function.
At least try to. I had my Lord with me, and that was sufficient.
When I was 26, I heard the first official words.. Parkinson’s Disease...
the doctor I had been seeing mentioned it as a possibility.. but, I
didn’t want to hear the words. I blocked them out, and found another
doctor who put me on an array of other drugs. Being a mother on welfare
grew very old. I refused to accept thinking about having a condition that
would keep me from making something of my life. My third daughter was
born, and I went to college when she was 6 months old. Finally, I got
enough education to land a good paying job.
But, soon the rigidity was getting impossible to deal with. Going to work
was total hell, but I made sure I went. I had finally found what I
thought was life.. and I was proud of myself.. I refused to let go of it.
But, one morning, I could not move. I could not get out of bed. It was
time to seek another neurologist.
The neuro that I went to decided to try me on something completely
different. Sinemet,.. Leva-dopa... It worked immediately. I was thrilled
to feel my body respond. I couldn’t believe that a pill could make me
feel so “right” Then the diagnosis came.. Parkinson’s Disease, A result
of encephalitis. It was time to face it. I think I stopped breathing for
an entire 5 minutes. I went to another neuro. I received the same
diagnosis, then another ... the smae... I couldn’t believe it! No! Not
Parkinson’s Disease! Not the disease that the woman on the train had told
me about! No! Not NOW! Not when things were finally going well in my
life! NO! I went home, looked at my daughters, and cried.
I drove to a church and parked in the parking lot. God was there. And
stayed with me then.. stayed right by my side and held my hand. He kept
me strong to work hard enough to purchase my own home in the country
before I was unable to work any longer. He has been here beside me as I
walk through the acceptance of this illness and fight off the illusions
of what the woman of the train left in my mind. I had the same illness,
but with God holding me, I made a vow..
"I have Parkinsons Disease, Parkinsons Disease does NOT have me."
Monday, August 11, 2003
A friend of mine told me something once that has really helped me make
sense of things. She said that God drops neon cows on our heads to make
an impact. We learn through adversity. The lessons are hard earned,
but the light which accompanies each one is so bright, there is no way
to ignore it. . It stays with us for the rest of our lives.
I had encephalitis, meningitis, and shingles when I was 15. I survived.
Barely. First came the shingles. Horrible welts covered my right ribcage
in a 3-inch band which began to inch its way around my torso.. My mom
took me to a skin doc announcing the advent of the shingles. I was given
a cream to use, some antibiotics, And that was that. Not much later, I
began to feel flu-like symptoms.. Very out of it. Then I began having
double vision. That was wierd. Out of the right eye.. all was normal..
the left eye showed me the world in a raised and tipped angle. This was
right about when the headaches began. OH.. the headaches.. I took so many
aspirin, I got aspirin poisoning.
Mom began taking me to doctors.. Not one would even guess. I did not have
a fever. My legs went out. I was having problems walking... I don’t
remember exactly all of what was wrong with my legs.. but, I just know
that for some reason, I had a hard time putting one in front of the
other... And then, finally, the delirium came. All I remember at this
point was standing in the hallway to my mom’s bedroom babbling something
incoherently. This did it.. Mom had had it. And I think God decided it
was time. I was taken to a doctor downtown Seattle, a specialist... a
neurologist... who gave me a spinal tap. There it was. Meningitis.. And
with it was encephalitis.... From chicken pox I had as a kid... I was 15.
I was singing, dating, planning on being a concert pianist, looking
pretty, partying, having fun, learning how to drive, and now.. it looked
like I was going to die. My mother cried.
I was put into ICU and pumped with perodan. I don’t know how much, but I
do know that my butt cheeks became sore. I don’t remember much of that
time. I remember my boyfriend sent flowers. I remember some friends from
school calling. I remember my parents visiting. I remember the nurse was
always coming in with a nice bright smile and a strange expression on her
face that I could not place. It was as though she wanted to know me
better, and I couldn’t figure out why. Then there is the one visitor and
one night I remember the most. The pastor from our church came. He asked
me if I had found peace with God. I didn’t understand. I was not sure
where he was going with this. Nobody had told me how sick I was. Then,
that night, through the percodan, . I felt I was dying. I didn’t just
feel it.. I knew it..
I prayed hard. I don’t know the words I used. I just knew I did not want
to die. I didn’t know how to pray. I didn’t know God, really.. I had gone
to church as a child, and since then.. I had run amok. I really began
getting into trouble as an early teen, and by the time these 3 monsters
hit.. I was very experienced in many areas I should not have been. I
knew I could do better. I don’t know if I made any promises. I just knew
I was 15 and wanted to live. The next morning, I woke up out of the
danger zone... I was released from the hospital about a week later.
I grew up very fast then. I didn’t know it at the time, but God was
strengthening me with lessons in humility. The neon cow. I still partied
and had a little too much fun for my age. My mother probably worried like
crazy about me. But, I looked at situations with so much more wisdom than
before.
I found one of the first things I wrote in my box of poetry I have
collected throughout the years. It was written around the time of all of
this.. I have tried to recall the words exactly, but time had taken them
away from me. And then, in the box... there it was. Typed in a centered
font with pride and care...
The System
In order to survive,
One must first be taught
In order to teach,
One must first learn
In order to learn,
One must first experience
In order to experience,
One must first survive.
Signed.. Laura Matthew
By the way, thank you mom. If I haven’t said it before, I need to tell
you now. You were so strong for me, I know that without you and God, I
would not have made it.
Sunday, August 10, 2003
August 10.2003
A journal. Wow. This is great! I have always loved to write, and have
wanted a place where I can dedicate myself to putting down reflections of
mine that I can share with others. Not just poetry or postings in a
forum, but, a place where I can be more personal. Somewhere that I can
share me.. all of me. Thank you Bren and Nan. This is very special to me.
The timing for the opening of my journal could not be more perfect as the
events in my life recently have allowed me to, once again, reinvent
myself. I have undergone a significant change in having a surgery to
improve my Parkinson’s disease symptoms. So far, it has been nothing
short of a miracle in my life. It has given me back a part of myself that
I lost so very long ago. Now, I have to figure out what to do with it.
When you have been living in a room with a degenerative chronic illness
for as long as I have, you become used to having to adapt to the
continual darkening of that room. The light has faded for a long time and
the shadows have crept in. There is a survival instinct that kicks in,
and you find yourself lighting candles to have some kind of light to see.
The shadows grow bigger and you have to find comfort with them for
sanity’s sake. And this is sufficient for awhile. But, the disease
progresses, and soon it is difficult to even light a candle. The darkness
then becomes your home.
Then, God in all His glory... extends you His light. And your heart
sings, your soul rejoices, but your eyes have been blinded and need to
adjust again to your surroundings.
I have had deep brain stimulation. This procedure was first mentioned to
me a few years before it was fad approved. My neurologist then thought I
would be a prime candidate for it. The thought of something making me
feel better excited me, but inwardly, it scared me to death. Even a
couple years ago, when I was approached by the Oregon Health and Science
University Hospital to become a participant in a research program for the
dbs I said yes. but chickened out. Fear was the underlying factor.
Finally, on my last visit to my neuro.. something came out of his mouth
that startled me into the reality of my situation. I had lived too long
in that dark room and had not seen how the surroundings affected me and
my ability to survive. I refused to admit that I needed anything or
anyone until he said these words... “If you do not go for the dbs, there
is a good chance that you will be looking at going into assisted living
very soon.” BAM. I had to face fear head on and look at my life from a
different angle.
My wheelchair has been a companion for only a short while, but I saw it
as adaptation., which it is. But there is a bigger picture here. That is
reality. The reality of pd. The reality of advanced pd. I needed to face
it. Get over my fears, and go for the dbs. I did.. and boy am I glad I
did. I went through hell with headaches on the first surgery, and the
second has left me with alot of stitches and pain in them. I feel like I
went through world war 3. And, I thought I looked it, until people began
mentioning things to me that astounded me.
I look in the mirror and see a middle age woman who has all kinds of
cuts, half of her hair is gone, and think “oh Lord, I am the bride of
Frankenstein.” Then I ventured out in public and heard things. The
strain due to pain is gone from my face, the darkness around my eyes is
gone, and I no longer look like I live in a dark room. People notice
things about us that we do not notice ourselves. And all of this came...
before the stimulators have even been turned on.
I have many feelings going through me right now. Fear, joy, anxiety,
anticipation, bitterness, disappointment, worry, and total awe are just a
few of them. There will be time for me to sort these out, I know. But,
right now I feel I am on the verge of something so new that I have to do
what I did after my bout of encephalitis and meningitis when I was 15
years old. I have to learn how to walk again. Slowly. One step at a time
very slowly to make sure I don’t trip over something. It was hard to do
then, and I know it will be hard to do now. But, I also know something
else. God is with me, holding my hand. And He has made me a survivor.
