toadie

Saturday, November 03, 2001

I had a Drs appointment today. I still have pd. Oh well, that sucks. I'm having a bit of trouble with too much on my plate right now. I'm going to take a break for a while. I have to have my meds adjusted again, extra doses and more mirapex, and a sprinkle of effexor.

I have a shirt that says "Caution, Does Not Play Well With Others" (My sister said it was cool to see that saying on the back of my shirt, just above the back rest of Johnny's bike last summer at the Lake George, Americade - a bike rally.)

I'll start wearing it more often, at least until the anti-depressants start working or I can become a little more human. I think I've become too dependent on talking here. I don't speak much outside of here, because my voice keeps fading away.

So take care, rest well and in comfort. I try to come back when I'm stronger.

October 30, 2001

Instead of posting my response to a post on plwp, I’m going to sort it out here. It feels a little safer, I don’t feel quite so

exposed. I’ve been thinking a lot about it. Mayhap, too much. I suppose I tend to over analyze things. I feel a need to explain

that I’m reluctant to post on the forums. I’ve been on these forums for almost 3 years and have seen a lot of changes. I have

more than a few battle scars from posting. There have been a few times that, I’ve been accused of being in denial, when I

tried to post positive messages and when I talked about the negatives of my pd, it has been responded to as depression, or

idle complaining. A few times I’ve had people “snap” at me when I posted a site about a med, saying they wanted personal

experience and they could’ve looked that up for themselves. It’s hard to take, when I’ve been to where I couldn’t post or look

things up for myself. It seems like a big risk to me, to lay my heart and soul out here. Sometimes, I feel like I’ve said too

much. I have a fear of being misjudged or rejected with an unfavorable reply, or blown off or ignored. My oversensitivity

seems to become more pronounced at some points of time than others. So I turn off the computer and live outside until I feel

up to being here without the pd magnifying lenses. But, I know who and what I am. I’m different. I know that not everyone

will like me. I’m a more than a little rough and frayed around the edges. I’m not everybody’s’ kind of person. I suppose that’s

one of the reasons I stick to the relative safety of researching topics and posting web-sites. It’s relatively benign way of

helping others. With all that out of the way, I’ll try to dig through the cob-web filled caverns, I call my brain. I remember the

first time, last January, that I woke up frozen with akinesia, my arms and legs pulled up tightly into a fetal ball. Unable to

move or speak, I could only blink my eyes. My husband had gotten up to put wood in the wood stove, just as he had been

doing every morning. The alarm was going off, with an incessant bleeping. I couldn’t move to turn it off. It seemed to get

louder and even more shrill. I laid there for over 30 minutes, my joints stiff, painful and aching from being still so long. At

first, panic began to seep in. Thoughts whirled around inside my head. What was this? It was below zero that night, had I

gotten cold? How long had I been rolled up in a ball? How long would it last? When is Johnny coming back down here?

What if he has to use the snow blower? He could be gone for another hour or so. That blanking alarm clock kept bleeping.

The more upset and worried that I became, my muscles cramped and became even more tense. As the tears of being trapped

within my own non-functioning body subsided. I tried to think of something soothing and calming. A song, a happy memory, a

place, anything to focus on, but where I was at that point in time. Memories of my Harley summer flooded my mind. The rich

azure sky, bees, the wind, the throaty baritone, Siren's song of my Sportster. Johnny riding along side me as we set off car

alarms by revving the engines and making them blatt. Jennifer on her little Yamaha, cheekily trying to imitate us with her

Evinrude (a boat out-board motor), eeeeing sound. I couldn’t help but mentally snicker as thoughts of a giant Christopher

trying to learn to ride Jennifer’s short motorcycle, and having to tell him to put the bike down. All of these thoughts made it a

little more tolerable, until I could be released from my prison within my own body. I still couldn’t move until Johnny came

back. He had thought to scold me for being too lazy to leave a warm bed on such a cold morning. When he realized that I

wasn’t being lazy, I saw the fear in his eyes. As he hauled me out of bed, forcing movement into one of my limbs and then the

next. Tears of relief began to stream down my face. But, I couldn’t let him see me crying. He was already beside himself with

worry, I didn’t want him to become more upset. I had to depend on my gruffness, growling and swearing. As the pins and

needles of circulation found its way back into sleeping hands and feet. The morning sourness act, replaced the crying. I’ve

awakened frozen like a statue, more often than I’d care to admit, it was temporary but normal. I suppose that my biggest fear,

is the day that it doesn’t go away. It’s been a long drawn out process to get my meds adjusted to where I’m just stiff as old

rusted hinges. Yes, I hear the clock ticking.

October 28, 2001

The lady asked me if I had I.D. I wasn't paying attention and vacantly replied; "it's out in the car." She asked me again; "Do

you have ID to buy beer?" I looked at her, and said "Are you serious? I'm 37." She said; "Well then, I guess you don't need

ID." I told her "Thank you though. You made my day!" She said;"Well, I'm glad I made somebody's day." I said; "I'd give you

a hug, but you may not like that." She laughed, and said "Thank you but, no, that's ok." I got proofed at the grocery store

yesterday! Can you believe that? hehehe The last time I was proofed, was by a man running his family store. He was a sweet,

89 year old man who was trying to flirt. I just hope his wife wasn't the jealous type. hehehe

October 27, 2001

eeeeeewwww it came out as one long paragraph or one long run-on sentence.let me try it again. I’ve been up since 4:15 a.m.,

I took my meds at 6:00 and by 7:30, I had already mopped the dining room, washed the dishes I had gotten out of storage, and

settled into a pot of coffee. hehehe I’ve been rather industrious this week. I’ve always laid claim to being a Domestic

Engineer. Because of all the many aspects of trying to manage a home, kids, dogs, ect. Counseling children, chauffeuring,

doctoring minor maladies, chief cook and bottle wash, lol or general stuff, like accounting, calculations (groceries, budgets,

recipes, ect),handling household cleaners, meds, and foods (knowing which ones can or should not be mixed together), well

you get the idea. hehehe It’s somewhat hard for me to admit that I can no longer do “IT” all, work full time (with or without

overtime) and take care of general or regular house hold stuff. Although it seems like I do much more work at home, around

the house than I did at work. They say that necessity is the mother of invention. I’ve found a lot of ways to adapt things in the

kitchen and around the house, so that I can continue to function in those areas. Cooking and cleaning ain’t everything, lol. We

all have other things we would rather do. lol I’ve had to learn to relax my some of my definitions and expectations of clean.

My home is no longer “magazine clean” as Johnny used to call it, rather lived in but not nasty. Johnny actually complained for

years, that the house was too clean, he says magazine clean is uncomfortable, too neat and looks like no one lives there. I

think cleaning was my way of having control over something, (like my environment) when there have been so many things that

have been out of my real grasp of control (like pd, **it happens) At any rate, Christopher started back to school on Monday. I

found some “stylish” exercise pants that snap off, with snaps all the way from the waist band and down the legs. I also bought

1-3 year old sized infant or baby's hats to keep his toes covered and warm on the casted leg. He went half days on Monday,

Tuesday, and Wednesday. I had told him to stay in his wheel chair for most of the day, until he build the strength to stay at

school all day for a few days, at least. He is supposed to keep his leg elevated when he’s not on crutches,to keep the swelling

down and ease the throbbing that happens when he walks with the casted leg hanging down. He really wants to stay at school,

so he doesn’t want to get a home tutor instead of going to school. Of course, he was going to all of his classes on his crutches,

leaving his wheel chair in the School Nurse’s office. It’s on the second floor, so he had to crutch from the other side of

school, and back to the Nurse’s office to get his chair. So, the school nurse, would call me and ask me to take Christopher

home. A large, worn out boy, with a swollen, painful and throbbing leg, that had been dangling down all morning. We got this

all straightened out. I discussed all of this with Christopher, and reiterated that if he keeps doing as he has been, he can

prolong the healing time and have to be in a cast longer. Also, endangering his grades and ability to keep up with his

classwork, by missing so many afternoon classes. English is one of the afternoon classes that he kept missing,one of his

harder and least favored subjects. He stayed in his chair all day, except for trips to the bathroom, and was able to stay at

school all day Thursday and even stayed after school on Friday to catch up on his school work. He’s a tough young man. I

have some other “stuff” to talk about, but I’ll do that later. I told a very dear friend of mine the other day, that I sometimes

feel very self-conscious because I talk so much, here, anyway. I don’t know if anyone else reads all this stuff, I don’t know

who reads, but I guess I’ll keep on yammering away. I don’t really know if anyone else is listening but it really does help me,

to sort some of this stuff out on paper, so to speak. I love this spell-check thing.

October 27, 2001

I’ve been up since 4:15 a.m., I took my meds at 6:00 and by 7:30, I had already mopped the dining room, washed the dishes I

had gotten out of storage, and settled into a pot of coffee. hehehe I’ve been rather industrious this week. I’ve always laid

claim to being a Domestic Engineer. Because of all the many aspects of trying to manage a home, kids, dogs, ect. Counseling

children, chauffeuring, doctoring minor maladies, chief cook and bottle wash, lol or general stuff, like accounting,

calculations (groceries, budgets, recipes, ect),handling household cleaners, meds, and foods (knowing which ones can or

should not be mixed together), well you get the idea. hehehe It’s somewhat hard for me to admit that I can no longer do “IT”

all, work full time (with or without overtime) and take care of general or regular house hold stuff. Although it seems like I do

much more work at home, around the house than I did at work. They say that necessity is the mother of invention. I’ve found a

lot of ways to adapt things in the kitchen and around the house, so that I can continue to function in those areas. Cooking

andcleaning ain’t everything, lol. We all have other things we would rather do. lol I’ve had to learn to relax my some of my

definitions and expectations of clean. My home is no longer “magazine clean” as Johnny used to call it, rather lived in but not

nasty. Johnny actually complained for years, that the house was too clean, he says magazine clean is uncomfortable, too neat

and looks like no one lives there. I think cleaning was my way of having control over something, (like my environment) when

there have been so many things that have been out of my real grasp of control (like pd, **it happens) At any rate, Christopher

started back to school on Monday. I found some “stylish” exercise pants t hat snap off, with snaps all the way from the waist

band and down the legs. I also bought 1-3 year old sized infant or baby's hats to keep his toes covered and warm on thecasted

leg. He went half days on Monday, Tuesday, and Wednesday. I had told him to stay in his wheel chair for most of theday,

until he build the strength to stay at school all day for a few days, at least. He is supposed to keep his leg elevated whenhe’s

not on crutches,to keep the swelling down and ease the throbbing that happens when he walks with the casted leg hanging

down. He really wants to stay at school, so he doesn’t want to get a home tutor instead of going to school. Of course,he was

going to all of his classes on his crutches, leaving his wheel chair in the School Nurse’s office. It’s on the second floor, so he

had to crutch from the other side of school, and back to the Nurse’s office to get his chair. So, the school nurse, would call

me and ask me to take Christopher home. A large, worn out boy, with a swollen, painful and throbbing leg, that had been

dangling down all morning. We got this all straightened out. I discussed all of this with Christopher, and reiterated that if he

keeps doing as he has been, he can prolong the healing time and have to be in a cast longer. Also, endangering his grades and

ability to keep up with his classwork, by missing so many afternoon classes. English is one of the afternoon classes that he

kept missing,one of his harder and least favored subjects. He stayed in his chair all day, except for trips to the bathroom, and

was able to stay at school all day Thursday and even stayed after school on Friday to catch up on his school work. He’s a

tough young man. I have some other “stuff” to talk about, but I’ll do that later. I told a very dear friend of mine the other day,

that I sometimes feel very self-conscious because I talk so much, here, anyway. I don’t know if anyone else reads all this

stuff, I don’t know who reads, but I guess I’ll keep on yammering away. I don’t really know if anyone else islistening but it

really does help me, to sort some of this stuff out on paper, so to speak. I love this spell-check thing.

October 23, 2001

I just realized that I failed to mention that the wheel chair we have at the house is one of my Mom's old ones. It doesn't fold

up or have foot or leg rests. Sadly, it is still more serviceable than the school's model.

October 23, 2001

Christopher had his appointment Friday afternoon. My brother and nephew came over to help me get him in the car. Chris

didn’t want to use the wheel chair, he wanted to use his crutches. Chris was able to use his crutches all the way out the back

door of the house and down the wheel chair ramp. But, just as he got to the car door, he almost gave out. So my very strong,

5’-8” tall brother, picked Chris up and put him in the car, with my nephew helping to get the lower half of Chris into the car.

The Doctor wasn’t there, so he saw another one who checked his cast because it was broken in several places. They couldn't

change the cast without taking Chris back to the O.R. They reinforced it with rolls of fiberglass. The techs said they usually

use 3 rolls, but they had to use 6 on Chris’s leg. He chose a nice camo pattern.

He went to school yesterday. They had told us that he would be able to use the school’s wheelchair until he was strong

enough to get around school all day by himself. The school had an old model of chair with the foot rests built in to the frame.

I was going to just take Chris home until I could get him a wheel chair, but I let him stay at school after he pleaded to. He

used to absolutely hate school.

We tried to get him to his first classes. In order to use the school’s old wheel chair, Jennifer pushed him, while I walked

backwards carrying his leg cast across the parking lot. Due to some construction at the school, you have to go outside,

through the school parking lot, several sets of heavy doors, and high school gym, to access the school elevator. Much to my

dismay, I found out that the school is well behind as far as being handicapped accessible, with any ease or practical purpose.

We will have to see what we can do about that.

So I had to go home, phone area medical supply places to rent a wheel chair. One place quoted a price and then when I

askedif it had the elevated leg rests, the price went up another $50 a month. They didn’t know when or if they would get the

larger and wider model of wheel chair to fit Chris’s 6’4”, 245 pound frame. blah, blah, blah

Another place needed a prescription for the chair and of course I could only get the Orthopedic group nurse’s voice mail.

Can't talk to a real person. After calling several places, being put on hold, and given the run-around, I was nearly in tears.

Frustrated, worried about Chris, I finally found one. I drove the 25 miles there, picked it up, did all the paperwork, (the

office got the same voice mail message) signed for it, and returned to school for Christopher. (The manager, who was very

kind was worried, that I must be so upset that I was shaking. I told him, I appreciated his concern but, I had pd and have been

shaking for 11 years.)

I got the wheel chair back to school, and ended up taking a very worn out Christopher home. I told him that tomorrow will be

better. At least he will have the chair and there won’t be any more days like today. We are going to play it by ear. We talked

about him staying at home and having a tutor. Hopefully in a few weeks he will build up his strength and be able to get

around school.

What does all this have to do with pd?

Trying to function on a level to meet the needs of the kids is very hard for me sometimes.

All of the driving around, the run-around on the phone, frustration and anxiety levels can all be maxed out. These tasks have

become taxing or demanding, a few years ago, they were just another barely noticeable bump in the road.

It has turned cold here. The cold always makes me feel more stiff, and some symptoms like tremors and dystonia seem to be

triggered or at least agitated by the cold.

I had trouble with freezing last night. I was O.K., went outside to bring Poco in, got in the house, and froze. I couldn’t take my

jacket off. Johnny had to move my rusty arms, and nudge me along so that I could get to a chair. Dystonia creeped into my

back and shoulders last night. On my right foot, the three small toes curled under while I was trying to walk. Big and little

knots wove their way into my muscles. I had to take a rare extra dose of meds.

It is scary when the old stuff (symptoms) come back to haunt me.

October 18, 2001

It’s been a rough week, so far. Monday, Johnny went to pick Christopher up from football practice. He called me at home

about 5:00 p.m. to say that they were taking Chris to the hospital, because the coaches and trainer thought his leg was broken.

Jennifer and I met them at the hospital. After an hour or so of waiting, and x-rays, it showed that Christopher broke his right

lower leg (tibia). My tremors couldn’t be stopped.

Christopher wears a 35” inseam, at 6’4” and 245 pounds, his legs are so big and long that the x-ray techs had to put the x-ray

film in kitty-corner to get a good shot of his lower leg. They had to take 3 extra shots to get his ankle and knee in the frames.

After discussing the break, options and after waiting a few more hours. The Orthopedic surgeon took him up to the OR to set

the break and cast it. His bones are very large and the Dr. said some difficulty getting the bones aligned and that he had to put

an extra-heavy duty cast on him. Christopher came back to the recovery room about 1:00 a.m. with a nearly 40 pound cast.

Johnny went home to try to get some rest, so he could go to work in the morning. (He didn’t have any vacation time, he had to

use it while his Dad was in the hospital, and for (his Father’s funeral.) I had taken Jennifer back to school to get Johnny’s

truck and followed her home, and returned to the hospital again, while we were waiting for Chris’s turn in the OR.

I stayed at the hospital with Christopher.

Christopher just turned 16 and was placed on the pediatric ward. We talked and watched t.v. He was very hungry. He hadn’t

had anything to eat since his school lunch period at 10:45 a.m. He sipped water, then ginger ale, ate a few cookies and toast

the nurse had given to him. Of course all they have on tv, at 3:00 am, are info-mercials about “Turbo Cookers” and all of the

wondrous creations they can make. Breakfast wasn’t until 7:00.

His breakfast consisted of a ice cream scoop of eggs, a small muffin, a half cup of Cheerios, milk and juice. The nurse

ordered him more eggs, bacon,(which he said looked like 2 dried up worms) and toast. I went to the vending machine and

bought some oatmeal cookies, crackers and pop-tarts to fill in, until we got home.

Getting Chris back and forth to the bathroom by myself, during the day, was quite an experience. His crutches are nearly as

tall as I am. His cast is so heavy that he wasn’t able to lift it by himself.So I would squat, pick up his casted leg and scoot it

along while he tried to go along on his crutches. He is doing much better on his crutches. He has an appointment, on Friday,

so I hope I don’t get a hernia by then.

I’m trying to catch up on some rest.

October 14, 2001

Friday was an off or awkward day, my nephew came over to help me cook, but ended up carting me around town to buy last

minute things (decorations fresh vegies and such) that I needed for the anniversary dinner. Jennifer stayed up with me while I

cooked, chopped up vegies, and preparing foods all evening Friday, until 2:30 am. I had to take an extra dose of meds, so that

I could do the more demanding tasks and still keep my fingers.(lol) But, I still have knicks, scratches, burns or something on

nearly every finger or someplace on my hands.

Then I got back up at 7:00 am to start it all over again, the party was scheduled to start about 5:00 p.m.. Christopher had a

football game so Johnny went to it and was gone from 9-2:30 and came back to help. He said he didn’t know how I was

going to get everything done by 4 that afternoon. I told him, “I’m good, it’s a Mamma thing.” We got everything loaded into

the car and truck about 3:45, turkey, ham, roast beef, lasagna, mud cake,cheeses, vegies, potato salad, deviled eggs, ect. I

cooked enough food for a small country, but it seems that’s what I do. lol

It was supposed to be a surprise for my oldest brother. He had just gotten back from a bike ride with my nephew as we got

there. Oh well. We started unloading everything, and I started hanging a few decorations, setting up tables and such. When I

didn’t greet Forist with my usual hugs, curiosity was eating him up as he had to casually retrieve a mysterious item from

another room, not to peek, of course.

When everything was finally in place, we brought him in and he smiled and looked about, touching the paper bells I had hung

over a table. He even tried to wear the ill fitting golden paper crown that I had gotten for him and Karen, pronouncing them

King and Queen for the day. Both of them were very pleased, happy, and touched. I could tell by their faces and see so much

in their eyes.

My brother is quiet, reserved, caring, with a lot of inner strength and character. He and Karen have been through a lot of

tough times together. He’s had a hard life. He’s a hard working man, with a strong sense of responsibility and obligation. I

remember the days when, Forist worked two full time jobs to support and provide for his wife and three boys. Now that all

the boys have grown up and left home, they get to enjoy their own lives and each other’s company. As far as I’m concernedhe

nearly walks on water. Aside from that, I wanted to do something special that I enjoyed, that I was able to do even with some

difficulty, for him and his wife of 25 years.

Now I have to get some lotion on my dishpan hands.lol

October 12, 2001

I have a head full of useless trivia, now if I could only access the important stuff,hehehe

Gargoyles were originally decorative figurines on gutters to drain away water from the roofs of old buildings like castles,

churches and such. They made a gargeling sound as the water drained through and that's where the name gargoyles came

from. Later on, in the Middle Ages, the Gargoyles took on the character of keeping evil spirits away. There are many kinds

and styles, depending upon the time period in which they were created. Notre Dame has the most notable, unique and varied

collection of massive Gargolyes perched upon the corners of it's Gothic roofs. Some are like winged bulldogs with log

chains to keep them on appointed their roosts.

I have rather small a collection of gargoyles, due to their expense and difficulty in finding ones I like. I have a rather fierce

apearing character facing our home's front entry door, poised and ready to pounce. A figurative Guardian to ward off evil

spirits. I suppose he's there more because of my wicked or warped sense of humor. I like to see the expression on people's

faces, when they look up as they walk in the front door and see the critter perched at nearly eye level on the entertainment

center, gazing with intensity at them.(It's one of the ones where the eyes seem to follow you.)

I don't have it there to make people uncomfortable, I just think it's a beautiful work. Many times people will take it down to

study or examine, and often reluctantly admit to its' "hidden" beauty. The graceful arch, or swoop of wings, the exageration

offacial expression, the heavy musculature. Sometimes, leading to an appreciation for the time it must have taken for the

artist, to finely detail the sculpture. Rarely, a few, see it as an ugly figurine.

I've had 2 very good days in a row. An unusual event for me, these days. I was very "On" and was able to ride my bike,

enjoying the sun and wind of 60-70-ish degree weather, taking time off from regular chores, and being able to sleep both

nights very soundly. Last night, I ran out of "good" time. Freezing, and stutter walking around the house.

Today I have to start preparing foods for my brother's Anniversary Dinner Party. I'm slow, awkward, clumsy, and stiff as a

manequine pose. I'll have to go get my nephew to help me with the cutting, chopping and cooking of various dishes. I'm

making my Mississippi Mud Cake. A rich chocolate, guey, and good concoction that I combined a few recipes together to

create. But, I will manage to make it through, slowly but surely.

October 10, 2001

Over the last few months, I’ve come to realize a lot of things. As a reformed or recovering work-aholic, my priorities and

perspectives have changed. I’ve made or taken the time to get to know my kids, husband, brother and other family members

again.

Before I had to stop working, whenever there was some type of conflict, turmoil or family crisis, I worked harder, longer or

more. Basically trying to avoid dealing with the stuff. Now I can’t escape the problems and have to deal with it, although it’s

in my usual head-on way. Although, I find that there are times that I can no longer grab the bull by the horns.(sometimes,

Idon't even want to see it.) When I’m at the tail end of a dose, that half hour before my next dose, I have a tendency towards

being easily agitated or crying when I feel like I’m being pushed too far. So I have to try to avoid being in situations that

exacerbate these tendencies.

I often feel like I’m from “The Old World”, as a parent. My kids really are good kids. They are just being teenagers and

exploring, flexing muscles trying to seek their sense of self, or some kind of sense of control in their own teenage world. At

least that’s what Forist, my oldest brother - who has survived 3 boys) tells me, when I ask for his advice or wisdom on kids.

Forist says it’s like when you’re hungry but don’t know what you want,the kids are just looking in the fridge (of life) and

trying to figure out what the "It" is, that they want.

My 17 year old daughter, Jennifer, is a beautiful young woman, I don’t think she is aware of how pretty she is, because she

doesn’t act arrogant or conceited. At restaurants, we have had up to 3 extra waiters from other tables. We have gotten used to

waiters (that are teenage boys) who forget their task and gaze at Jennifer, while they refill Johnny’s (her Daddy) ice tea glass,

with tea overflowing onto the table. hehehe

Jenni will be 18, in December. Recently when we went to pick up pizza, the 22 year old assistant manager asked her out to

go to a movie. Her Dad says it’s O.K., the boy has a J-O-B and seems like a nice fellow, but she has to clear it with her

mother. I told her that I thought he was too old for her. Yes, she could go to the movie with him. BUT, she had to take her

little brother or her 23 year old cousin (or my brother) with her. And He had to feed them. (Her little brother is 6’-4” and

245 pounds.) Needless to say, Jenni didn’t like those stipulations. I’m afraid that in the end, he’s going to be much more

appealing to her now.

Some things never change. When I was that age, I thought I was attracted to older guys with an “edge”, you know, “the bad

boys”. I look back on it now and they just had issues, or unresolved conflicts, like a few of Jenni’s old or ex-boyfriends.

Some were from very abusive families or homes. Jenni has a very warm and kind heart. She, too, thought she could fix,

change them or help them to heal as people. Ever since I was very young I’ve taken care of stray animals (the cute little

puppies who grew up to be dogs, mostly). Since she was small, Jenni has tried to take on the responsibility of trying to take

care of “stray” people, so to speak.

It turned out that I fell in love with a plain old country boy, with a big warm heart loaded with sincerity. He has some rough

edges like me, but, I think we balance or compliment each other with our differences. I just hope that Jennifer will find

someone, someday, that will allow her to be herslf and make her as happy as I’ve been. I just want her to finish college first.

(lol, you know, it’s mamma thing)

I have go work on my party plans for Forist and Karen’s Anniversary. Memory and Organizing isn’t one of my strong suits

anymore, so I make lists of everything,from cooking, cleaning and shopping. It helps me not forget so much.

October 07, 2001

Thank you, Sandy a, I get that feeling of talking on and on and no

one is listening.

I'm planning and doing the cooking for my brother and sister-in-law's 25th wedding anniversary on the 19th, we're

celebrating it on the 13th because of my brother's work schedule. My nephew is giving me a lot of help me with the party. I

did the grocery shopping for it today. Gosh, I get tired so fast these days. When ever I have big or holiday meals, I have to

make a menu first then make my list from notes I make on each dish or item, that way I don't forget so much stuff. My nephew

likes to cook, and is going to be my back up, he just doesn't know it yet.lol

I like all kinds of music, I found a couple of cds today, with assorted music like Brick House (the Commadores), Superfreak

(Rick James),Wild Cherry, Boys II Men, (Tony, Toni, Tone), R.Kelly, so I have an eclectic mix like Nelly Furtado, Rob

Zombie, Drowning Pool, Linkon Park, Dwight Yokam, to my latest favorite the soundtrack from "O Brother Where Art

Thou", mostly a mix of older styled soulful music.

Music is a lot of different things to me, inspiring, reflective, soothing, expresses emotions, can remind me of different points

in my life, like every time I hear Van Halen's (Dance, Dance, Dance) I think of summer, or a summer many moons ago. I have

to be careful about some rythyms or bass being so fast or strong that it sets off my tremors. (like Korn)

But, occasionally too much meds (sinemet)makes me sensitive to sound. Everything sounds too loud. I have to go off by

myself, where it's quiet, so that I don't snap or grouch too much. I just hope that next Saturday, will be a good "be around

people" day.

October 06, 2001

Do other people actually read all this stuff? Why?

October 06, 2001

Christopher says the other boys on the football team are happier, more relaxed, no one is afraid, and they all get along well

now. Most of them are friends, sharing the common bond of tyrany seems to have pulled the boys together. It seems like I was

more upset about all of it than Christopher was. He says the other boys call him 'Big Bubba' because he's the biggest boy on

their team and he has some stray lingering southern accent. Well, I'm glad they got rid of those assholes, now the kids can do

what they came to do. Play football and have a good time. :)

October 05, 2001

I forgot to add that the boy's hazing was done in a empty locker room after the other team mates had dressed out and left for

practice. The victims were alone with the perpetrators.

October 05, 2001

The football coach called us Wednesday about 8:45 p.m., to speak to Christopher and talked to Johnny. The Coach said he

had been on the phone calling other parents since 6:00 p.m.. The Coach had just found out that a group or gang of 5 boys had

been hazing the other boys on the football team supposedly as an "initiation" to the Jay Vee team. The boys swarmed (as a

pack) most of the other boys in the locker-room before practice, as they changed out. Supposedly in an initiation ritual,

because these boys played last year and were "veterans". The Coach told Johnny that he was completely pissed off about

allthis, and was very apologetic that our son had been a victim of it.

Christopher had thought it was only happening to him, and that the boys had singled him out because he's so big. He said they

didn't him very much or very hard, they told him "they didn't want to make him mad." Even after he refused to join their

"family" or help them "initiate the other boys", the 5 boys left him alone, fearing his anger or reprisal. Christopher didn't tell

us about any of it, thinking that it was all over. Done.

The Coach told Johnny that this pack of 5 boys jumped Chris in the locker-room Friday (9/28). All 5 boys, swarmed

Christopher as he changed out before football practice. They punched and kicked him, and as he went down, Christopher took

a knee to the face that broke his glasses. He said he was so surprised by the boys attack that he only got one good swing in his

self-defense, that it slammed one of the boys into a wall, he said thought it was the boy that kneed him in the face.

We kept telling our son that it wasn't his fault, that these boys were very wrong. This is not acceptable behavior, it is

un-sportsman like conduct. It should not be tolerated or a part of going to school or participating in school sports. We

reiterated that he had been a victim of bullies. He didn't have to continue to be a victim, that he should step up to the plate

when he was called into the Principal's office and just tell the truth. That way the boys won't continue to do it, to anyone else.

Christopher was unconcerned by his own situation. His nick name at school and on the football team, has been "The Gentle

Giant". He still apologizes for tackles at practice. He sticks up for little kids on the school bus and doesn't allow the

hen-pecking of injured team mates or smaller kids. He feels that he should have, could have or would have changed

theoutcome of events because of his own size and strength. It is so hard to console a child who feels guilty because he

couldn't protect his team mate, a smaller boy.

The hazing had escalated Tuesday, into the vicious beating of one of the smaller or "wiry" team mates, who refused to join

them. He was very worried about that boy.

Yesterday the entire matter was handed over to the High School Principal. The 5 boys were thrown off the football team for

hazing, and suspended from school for 5 days. Their parents notified. Football lockers were cleaned out.

The team had a game last night. The players positions had been shuffled about in last minute adjustments. As a team, the boys

played better and with a new vigor than they had in any of the other games. They cheered each other on, and acted as though a

weight had been lifted from their spirits.

A few more parents cheered loudly for the boys at the away game, instead of the usual golf clap.

They won their first game, with a score of 22-8!

The night game was held under the lights, in an away stadium. I had to wear light sensing or photo-gray sunglasses because

the angle of the bright lighting seemed to pierce and hurt my eyes. My Dr. says that the muscles around my eyes don't react as

quickly as they should, a type of bradykinesia.

I overheard someone on the other side of the bleachers ask another lady "why is that woman wearing sunglasses?" A "lady"

responded by saying, "I guess that's what happens when you just get out of re-hab"

I felt badly for the "lady" because she seems stuck in that teen age mentality. Intolerance for others differences, to make fun

of, fear and belittle those people or things that you don't know about or understand. Essentially, instead of standing up to the

bullies, she joined them.

I have had difficulty with this entry. It doesn't matter how big or old my son is, he is my little boy. I couldn't protect him from

such ugliness, but we can help him to recover from it.

A few parents follow their kids to all of the football games, even fewer to away games. I seldom see other parents at their

after-school football practices while I sit on the ground,in the sun, wind, or rain.

October 04, 2001

I popped awake early this morning, but chose to be lazy and enjoy the warmth of the blankets, feel of the sheets and listen to

the sleeping sounds of the world around me. I finally got up at 4:00.

Poco is our 100 pound, 1 1/2 year old Great Pyrenese-Chocolate Lab puppy. She is the baby of our 5 dogs. She is supposed

to be my husband's puppy, she plays rough with him, chewing on him, rolling on him, playing frisbee, running, romps, and

tackles. Poco is a big lovey girl,I'm grateful that she's more gentle with me, once in a while she tries to use my arm or hand

for a teething ring, or pulls me across the yard by her leash.

Poco follows me through the house at night. She likes to walk into the computer room and is tall enough that she nuzzels into

my hair and neck when I'm sitting at my computer. She has a spot by my computer chair that she picked out when she was a

tiny puppy. We eat fruit loops, pizza rolls, and other assorted junk in the middle of the night.

All of this unconditional love and affection from such a beautiful creature goes a long way towards making pd fade into the

background. Poco Oso was from the SPCA.

October 01, 2001

I really need to sleep.

September 30, 2001

We ran away from home!

We got back about 12:30 last night, from a rare weekend away from home, as reckless, wanton, semi-responsible adults.

Staying up late, eating junk and taking the long way home. We went to an open house at the Harley Manufacturing Plant in

York, Pennsylvania.

An endless sea of black leather and motorcycles, stacked like cord wood, parked in acres. Days and eves filled with the

roars of thunder. We had a lot of fun.

The demo (demonstration) rides didn't pan out, as the wait in line to register was about 2 1/2 -3 hours and then the wait in

line for a particular bike was an average of about 2 hours. So we visited the various vendors, instead.

We had a lot of fun.

On the 6 hour trip home, we talked about a lot of different things. One of which was that we both found it easier to deal with

the physical effects of pd much easier than the cognitive effects or changes. Johnny is a very kind, patient, supportive man, yet

I often wonder why he stays with me.

September 26, 2001

Today is Johnny’s birthday! He is 44. I couldn’t wait to give him his gifts (nor could he wait patiently to get them, lol) so we

exchanged our gifts on Sunday. He seemed most pleased with his new Harley wear, a manual for repairing his bike and a 6

quart crock pot.

I told my brother, Forist, that Johnny is hard to buy gifts for, I feel like I get him the same kind of stuff all the time. Forist

said, “No, not really, he’s happy with anything big and black with Harley on it.” lol

We have planned a trip to York, Pennsylvania, to take a tour of the Harley plant and attend the open house. The manufacturing

plant had a program, that they would let you ride their new makes, models bikes, if you brought your motorcycle license and

helmet. We don’t know if they are still going to have that, because the program and it’s details, were taken off the Harley

plant’s web-site. But, they have several rides scheduled, a parade, and tours, so it should be fun. Johnny is looking forward

to the down-time, and more than happy to ride whatever they will let him.

I was secretly hoping to be in good enough shape to take a ride on the new Harley V-rod. It’s a combination of sport bike and

cruiser, it’s built for power and speed to reach the racer market.

Here's the web site if your curious as to what I'm talking about. lol (http://www.harley-davidson.com/) To quote the Harley

web-site "A liquid-cooled, 60°, 115 horsepower, 1130cc, fuel-injected, Harley®-to-the-core engine. With dual overhead

cams and four-valve heads. It's a high revving design, with a 9000 rpm redline. Inside you've got racing-style forged pistons,

and a one-piece forged crankshaft."

I think it’s ugly in it’s appearance and sound. It doesn’t have the deep throaty Harley potato sound. It has the shrill cafe racer

bumble bee noise.

But, I wanted to try something new and different. I wouldn’t have to worry about hearing the ca-ching sound of a cash

At any rate, my birthday is Friday, the 28th. I will be 37. Oh my, when did that happen?

The kids are going to stay over night with my brother and his wife, (Forist and Karen), Christopher has an away football

game on Saturday. They promised to cheer loudly and video tape the game for me. (at least the parts where Christopher is

playing, lol)

The month of October augers a time of bittersweet memories. It brings a sadness with it. It’s a time when Autumn is in all it’s

glory in Northern New York, flouresant bright, festive colored trees, a new crisp coolness in the air. I remember many

Halloween’s spent searching for the “right” costume, only to have to wear heavy winter coats, mittens and hats over it. Oh

well, I’ll talk about all that some other time and not worry about it now.

September 24, 2001

well my 30 minutes to get ready turned into about an hour and a half. i'm slow as dirt in the morning.

my son is getting to play with the football team a lot more. he seems to enjoy it, building muscle, confidence, co-ordination

and has a more constructive way to channel his pent-up energies. he's still second string, but he's learning, he played most of

the 4th quarter. the coaches have noticed that he is developing into quite a powerhouse. he still takes it easy on the other

kidsat practice, but during his game time, he is a force to be reckoned with. he had 3 boys from the other team tackle him, he

pushed them out of the way and continued to run without giving much notice to a over 200 pound boy clinging to him.

At any rate, i had to get my eyes checked today. the perscription went up a notch, for the first time in about 8 or so years. i've

been having headaches for a about a week, i suspect that my eyes changing are behind most of it. other than that, "it's all

gravy" as my daughter says. i'm going to close for now and maybe write some more later.

September 22, 2001

My son has an away football game today. It's at Whitesboro, about 1 1/2 hours away from here.We have to leave in about 30

minutes, regular time not parky time. I haven't taken my meds yet and I gotta take a shower, do my mop of hair and plaster on

some make-up, thank goodness for concealer,lol. I'll tell you about it all when we get back.

September 20, 2001

pwinkle,

Thank you for so much effort and hard work taking care of the new web-site and our journals too. Thank you, for finding all

the beautiful gargoyles. :)

Life, teens, marriage and pd

Well, I'd like to tell you about my family, my husband and kids. It’s very long.

Today has been a good day, so far.

To put this in relative perspective, I didn’t struggle to open shampoo, conditioner, shower gel, or toothpaste. I didn’t drop

them in the tub as I’m prone to. I didn’t get frustrated and pissed and pitch an un-cooperative or offending object from the

shower, to skid across the bathroom floor. These obstinate containers seem to open magically in flight, or when they come to

rest, spilling their contents onto the floor. I grumble a lot as I clean up my mess. If I’m having a tough time Johnny or the

kids,open the bottles for me ahead of time, so that I can avoid the unnecessary added difficulties. These outbursts of temper,

thetemporary loss of self control, and frustration used to be very embarrassing to me. At first, Johnny or the kids were

worried that I had fallen in the tub or something to cause such a ruckus, now they just blow it off, knowing that I’m just

blowing off steam.

My teens put away the laundry, occasionally my clothes just go away. No one knows where or why they went away. It is

thesame way with things that break, no one knows how or why it happened, it just broke. But, I was still able to find most of

my clothing with some ease. Although, I have to wonder if there is a Secret Sock Society meeting being held somewhere,

perhaps that is where my socks have all gone.

I nearly had to shut my eyes as stepped into my daughter’s room to borrow her hair dryer. She has assorted of grooming aids,

(hair straighteners, curling irons, curling brushes, hot rollers, ect.) that we call her power tools. The consummate teen with

over 60 bottles of various size and colors of nail polish. I can not really say much, I have so many shades of eye shadow that

it’s hard to find a new one that I don’t already have. She borrows everything, from clothes, shoes, make-up, CDs, books, alist

to lengthy to come to mind.

I’m very proud of both of the kids, I worried that my pd would effect the kids in a negative way. But, they are both more kind,

patient, accepting and tolerant of other people’s differences, physical or otherwise. But, they have always been around

relatives with physical disabilities. My Dad had cardio-myopathy, my Father-in-law, a dwarf (he was 4’-8” tall), was

paralyzed from the waist down, caused from a progressive bone disease that is prone to dwarves, my Mom had a stroke

andwas paralyzed on her right side, and my brother, David, his right leg was 2” shorter than his left from a motorcycle

accident. They all had similar attitudes, they stop and dwell on the injury, disease or unfairness or why, for long, they did the

best they could with whatever life had given them.

Jennifer is a bright, gifted and beautiful young lady. She is out going, slightly flamboyant,(a story I will talk about later)

possessing a modicum of self-confidence without an arrogant attitude, she loves people, to be around them, and to some

degree to be the focus of attention. She is a social butterfly with friends in many circles, and the phone seems to ring

incessantly just for her. She has so many of the wonderful qualities that I wished to have as I’m shy, and somewhat

introverted, it takes me a while to warm up to people and talk. (Once I was telling my brother, David, about the many

wonderful ways Jennifer was so different from us. I was trying to say that she was very flamboyant, but instead I said that she

was very flatulent. We laughed at my brain fart until we cried. lol)

Christopher, is a very bright, big, strong and sensitive young man. He is a little shy, he doesn’t care who’s around, he will

give me a hug, a kiss on the cheek, or blow me a kiss, and say “I love you, Mamma, have a good day.” His football is helping

him build self-confidence, co-ordination, stamina, and strength. He’s becoming more aware of his many good qualities, as his

team mates tell him that this or that is cool.(It’s different or carries more weight from his peers than coming from Mom or

Dad, you know.) He dotes on his sister, yet they still have their squabbles. I have a hard time grasping his physical size, he is

so huge to me. At 6’-4” and 245 pounds, he’s grown almost a foot in height and put on about 100 pounds in the last year and a

half to two years. Yet, he is very gentle, he lavishes his miniature dash-hound (sp.?), Weenie, with time, love and affection.

Weenie is a tiny dog, of about 6” tall, about 18” long and 11 pounds. Weenie absolutely adores and loves Christopher,

follows him everywhere, if he’s outside riding his bicycle she must chase after him, afraid that he will leave her sight. He in

turn even bought her a tiny Harley vest, that suits her big dog complex. That is to say she growls, barks and tries to scare and

discourage the bigger dogs away from the food or goodies because she thinks she is a big dog, too. My oldest dog, Chloe, is

grumpy and has little patience for Weenie’s show of dominance, the 2 often collide in a battle of wills. It’s extremely seldom

the conflicts evolve into physical fights, it’s mostly loud barking, fierce faces, and noise as those two argue.

My husband's name is Johnny. He retired from 20 years of military service, for many years he was a pharmacy tech

instructor. There were many restrictions on his appearance, weight requirements, hair, and mustache. No beards. He's a big

man, with long blonde hair half-way down his back and a full beard, half-way to his chest. He looks like a big Viking to me,

so that's one of my affectionate names for him. (My big Viking). He trims his beard every so often, but most of the time he has

a beard long enough to rival those of ZZ-Top.

Appearances can be deceiving. Some people think he has an intimidating or formidable appearance. Just ask some of our

daughter's dates.(hehehe) He is a very mellow, laid back, kind, caring, affectionate, loving, sensitive and gentle soul. He's

pretty out going, has no problem with public speaking, crowds, being in the middle of meeting new people or new situations.

He loves to talk about hunting, sports (especially football), and motorcycles. He really doesn't talk a lot, he's kind of

reserved, we can ride together in the car for hours,hardly speaking, there's nothing wrong, it's just a companionable silence.

We are polar opposites in a lot of ways, but, are alike in many other. He is slow to anger and very patient so he's a great

balance to me. (I tend to be the hot head, I used to thrive under crisis.) I’ve spent more than half of my life with this man. He

knows all of my secrets, fears, what makes me tick, what makes me happy, and what doesn’t. He knows things about me that

no one else does, yet he accepts and loves me unconditionally, for the way I am, warts and all. And I would do anything for

him to make him happy, to see him smile, or to see that content look upon his face. We are both very strong

willed,take-charge, do-ers, and fixers, people that take our responsibilities, or obligations very seriously, occasionally it

causes friction. Actually, we are more like Rams, we bump heads.

I don’t think I feel things stronger than anyone else. Some of my coping skills are impaired, I don’t react or adjust to things

the same way that I used to. I’m not using my disease, illness or meds as an excuse, for bad behavior. I’ve always been

ableto behave badly on my own accord. I’m just saying that, I have to keep in mind that things are magnified and look bigger

or worse than what they are, sometimes.

It’s hard for me to admit out loud all of my embarrassing, humbling pd moments, insecurities, anxieties, worries and fears.

It’s hard to put them all into words to explain what I think or feel. Saying them out loud, somehow makes them have more

power, or more real and having to explain it to another person makes me feel vulnerable or exposed. But, I’m finding that

Ihave to share all of this stuff, so that my husband and kids can understand where I’m coming from. I’ve always been sort

ofdeficient at explaining me.

My soft, murky voice creates problems, it seldom raises loud enough to be heard for any length of time. I remember the days,

when I was in basic training and the drill sergeants would tell me to shut up because they couldn’t hear anybody else. They

said I had a loud, pig or cow-calling voice. (if the drills dropped you for push-ups and they couldn’t hear you count, they

would make you start over, so that was why I was so loud.)

It takes me a long time to get ready to go some where, when it used to take me 40 minutes to shower, iron my clothes, do my

hair and make-up. Now, I don’t iron, seldom do my hair and make-up. I worry with turning my socks wrong side out or

having to fix the seams of my socks, so that my dystonic, rigid toes on my right foot don’t become more inflamed. Shoes, I

have over 50 pair, some due to a shoe fetish, some due to the dystonia that kicks up when I wear a pair and they become too

uncomfortable. I have to get the ones with a big toe box and chunky soles, luckily they are in style. I usually only wear about

2-3 pair of them, on a regular basis.

The adjustments we have both had to make because of pd are numerous. It’s been very hard for me to go from being very

self-reliant, independent, and self-sufficient, to become so dependent on Johnny. I can no longer live alone. I can no longer

“do it all” by myself. I should say, that I don’t want to either, that thought is very scary to me. But, I never thought I would

need. I was raised with the idea that you should never depend on anyone but yourself, or you will suffer the slings and

arrowsof disappointment.

Johnny doesn’t seem to mind that I lean on him so heavily. At times, we get into arguments because I try to do something for

him, whether I’m trying to make something easier for him or doing something he knows I’m uncomfortable with (like being

around crowds), so that we can do things that he enjoys doing, like the bike rallies or going to college football games. It

grates on him, that I’m still trying to do things to take care of him. But, that’s just me, a part of who and what I am, I take care

of others.

It’s hard to change roles from taking care of everyone and everything, to be the one to need others to take care of me. My

limitations piss me off sometimes, irks my pride. My future is uncertain at best, but I have to keep rolling with the punches.

As does our relationship, to grow, adapt and change. I suppose everyone in or situation has the fear in the back of our minds,

that maybe all of "this" will become too much, for our partners. I worry about it sometimes. I (we) have to accept, adjust,

adapt, and overcome, that old Marine motto. I’m getting better at asking for help, receiving help, and accepting help with

grace and dignity.

On really bad days, I worry about the darkness that may be looming. Perhaps a day will come, when I need full-time care.

Maybe, Joe Peshi will be available, Heaven only knows he may be one of the few who can tolerate my language or

difficulties in finding more tolerable or acceptable words than the ones that fall out so easily. But, I will keep slugging it out,

do the best I can and just worry with today.

September 17, 2001

i should say, at least until next time... i post

September 17, 2001

I suppose the common thread among all of my seemingly endless chatter is that I have a difficult time settling down to discuss

serious issues. I have no wisdom, insight, or understanding for the events of this past week.

I chatter about things I'm comfortable with, trying to gain some sense of balance in these very uneasy, uncertain times.

Turmoil and conflict on a small scale in the home, with kids bickering and the like is hard for me to deal with. Seeing it

explode all over the MGH forums, as tempers run hot, patience and tolerances run thin, I think it would be better for me to

step back from all of this for a while.

September 17, 2001

It's after 1:00 a.m. again. I slept well last night, so it's likeley that I'm up for the rest of the eve. So maybe, I can tell you a

story, a page or chapter from my tiny world. Who knows, these stories may cure insomnia someday.lol

Saturday was a beautiful crisp clear day. It started out about 40 degrees and we had planned to go for a ride on the

motorcycles with my oldest brother, Forist. I had planned to ride on the back of Johnny’s bike. Johnny’s Harley Super Glide,

is a big beefy 610 pound, blatting and barking beast. When we both ride our bikes together, we enjoy setting off car alarms.

hehehe

I was dealing with a kind of settling disappointed but with my condition, I have to be realistic. (I’m still trying to get used to

that term, “my condition”) I can only ride when I'm really ON. I have been relegated to relatively short rides of a hundred

miles or preferably less. I can still ride my bike but not with the ease and comfort that once gifted me. So I stick to riding up

to the store or to my brother’s house and back. Short distances of about 20-40 miles, round trip. It’s taken quite a toll on my

pride. But, any ride, even a short ride is better than no ride at all.

My brother and his wife, came over (on his Honda Shadow Spirit) to our house about 10:00 a.m., after the weather warmed

up a little. He had his son, Jason, in tow driving his 4 WD pick-up truck. Forist had brought Jason, so that if I wasn’t able to

ride any more we could load my bike on the truck, and we could continue on with our trip. I was so happy and grateful at

Forist’s thoughtfulness and elated to be able to ride. We weren’t for sure where we were going or for how long, but we were

going for a ride.

My Sportser sings it’s own song with a gruff baritone voice. I can’t hear much over her as she belts out her own tune while

the wind whistles past. The open straight-aways welcome me, as I kick her shifter up into gear with a solid thunk, and get up

to speed. The wind was cold, at times, piercing my leathers, but the sun was so warm. (I suppose it would be much like

trying to sit on the hood of your car at 30 - 40 degrees and have someone drive 60 mph. Last year on September 6, I rode to

work at 26 degrees, I had to worry about frost bite taking the ends of my numb fingers for 3 days)

I’ve let my hair grow out, so it’s kind of shaggy, long and rather unruly. I stow it in a low ponytail with 2-3 extra elastic

bands, down the length of it. My fingers too clumsy to braid. I leave my hair down occasionally, but have to get someone

with patience to work the all of knots and knarls out. My once new black logger boots are thoroughly scuffed and worn.(Last

year I went through 2 pair of boots.) (I can not write- it's about 1/16" tall tho, sometimes I can't walk very well, but when I'm

really ON in a big way, I can ride my bike,lol)

It’s a beautiful day. It’s too cold for bees and there aren’t any other bugs out. No little kids pitching gummy bears out the

window of their Mom’s min-van. (It’s tough to show up at work after being assaulted or pelted by toddlers, with a jelly bear

candy stuck on your head or face.)

We stopped to eat, I took my meds again. We decided to go to White Face Mountain. A trip from our house, that is almost to

the other side of the state, of about 250 miles, one-way. It was too cold for me, the cold makes me stiff and tremors seep in. I

was able to ride about 125 miles altogether, before I had to load her up, with very few tears. It was so beautiful outside and I

was so happy being able to ride my own bike. I love to be “In the Wind”

The twisting, winding curves of the Adirondacks, that were once a favored haven to me, have become fraught with anxiety.

Pd balance disturbances make me feel like I’m being pushed and shoved, it’s difficult to right myself. Anxiety and fear begin

to replace the joy, freedom and sense of peace that I have only found when I can ride. My depth perception makes the wide

white line on the outer edge of the road appear like a definite drop-off. In my mind, I have come to recognize these things and

have been able to talk myself out of them or through them.

The thing that most people don’t realize about riding a motorcycle is that you have to become very aware of your body and

what you can do. You must, absolutely know your limits, and ride safely within your skill limitations, there is no faking it,

black-top is very unforgiving. Pride is a bitter pill to swallow, but the alternatives can be fatal.

September 16, 2001

gosh,i talk too much

September 15, 2001

The thermometer has dipped to a balmy 35 degrees, a sky the color of India ink is filled with a smattering stars. All appears

calm, save for a few stray coyotes calling in the background. I live in a rural area, somewhat wild and woolly. Streams teem

with fish, the woods run as far as the eye can see. You can still see herds of deer feeding in the meadows. Black bears amble

about, occasionally interloping on residential areas and people. Or is it that man has intruded into their environment or

homes?

There is so much to be said about the rugged and untamed beauty of Northern New York. The woods of my childhood called

me back, to be at home, after many years of living in the deep South. Truthfully I have become too Northern to be Southern

and too Southern to be Northern.

The cold and frigid months of January and February lock in without mercy. The hostile winters with it's 2-3 weeks of solid

25-30 below zero weather, can be a formidable companion. The North winds come howling, roaring with a rage, out of

Canada, bringing it’s Arctic Circle breeze.

Hail dances freely upon the tin roof. As a child, I imagined an armored knight gracefully, effortlessly tap dancing across the

roof top, with a rhythmic rat-a tat-tat, fleeting and fancy memories. Sleet melds into a shinny glaze upon the roadways. Ice

forms and drips from tree branches, bowing the branches of the strongest oak. A 150 year old maple will succumb and split

in a barber chair style from the weight of the layers of ice and the winter’s relentless winds pounding.

The power of Nature, stark, raw and uninhibited. Ice floes jamming the rivers, causing flooding the on the plains during

January thaws. A short reprieve from winter’s harshness, where temperatures rise above freezing levels, giving the false

hope of an early spring. Only to have a deep February frost seep into the landscape, sealing the ground in a 3 foot deep

thermafrost. Yes, dirt freezes three feet down. (Or should I say the moisture in the dirt causes it to?)

I remember waiting for the school bus in 25 below zero weather, if your hair is still even slightly damp, your hair will

freeze. Steam rises from exposed skin, breathing is very difficult. The air is so cold that it burns your air passages as it’s

seers its’ way through. Spring attempts to lure you out into it’s world of blossoms and bright skies.

The summers seldom crack the 90 degree mark, and when it does, most people stay indoors. In Alabama, I remember mowing

the yard, many times when it was 98 degrees outside, working on my tan. Now, people don’t sit in the sun or worship the sun

the same way they did many years ago. All the new discoveries.

I remember many peaceful afternoons, spent acquiring a tan. Listening to all the birds. Resting my eyes, as the sun dappled

through tree leaves and onto my eye lids. Light reflecting, glowing in the gentle summer’s warm breeze.

September 14, 2001

I've been ambling through the house, trying to figure out what I'm supposed to be doing. I have make lists, of things like what

I'm supposed to do, groceries, you know stuff like that. However, I often misplace the notebook with my notes in it. I stopped

using those sticky notes because inevitably, I would have a post-it grocery list on my butt.

Everyday little worries seems so far removed from the stark horror, disbelief, and overwhelming loss of life of the terrorist

bombings of the World Trade Center, hi-jackings, and Pentagon.

I'm going to try to sort through some of this. Maybe writing it out will help to bring some understanding into the

over-whelming confusion of emotions.

I can not even grasp such an abstract idea of a group of people acting together to conceive an idea of the mass murders, plan,

orchestrate minute details, and execute, without mercy or remorse the devastation and havoc. Exhorting followers with the

outcome, to deliver a message that we as a Nation or "Super Power" are not in-vulnerable.

The hi-jacked planes heavily fueled for cross country trips, used as tools, instruments of death and destruction. To cause the

highest impact, largest amount of damage, wreaking highest death tolls, with the minimal amount of effort on the part of the

terrorists, their financier, or their ultimate benefactor. The passengers aboard were secondary, of no real significant value to

the terrorists.

The most foreign concept to me in all this, is the cold malice and hate. The complete disregaurd of human life.

I had met a Lady named Sunshine briefly, at the PLWP Rally in April in Kentucky. I hope she will not mind my divulging this

information here. She is a Flight Attendant, with a beautiful radiant smile, and a very kind heart and gentle soul. Yet, I

worried about her, that she had been aboard one of these planes, innocently performing her job duties, until I had news that

she was safe.

I can not imagine anyone, Not once giving thought to all of the dead and missing. That there are people who will have no

answers (or may never have) for their loved ones where-abouts. There are people that may never have closuer. The

un-resolved, unfininished chapters torn from human lives, consequences of devastation, loss, pain and suffering, interjected

in so many people's lives.

I am at a loss to fathom or process all of this. I keep thinking of all of the people, and families profoundly effected by this

disaster. They were all someone's baby, child, daughter, wife, sister, mother, husband, son, brother, father, perhaps the

saddest loss, a life not yet born. They were all touching another person's life. Special to someone, perhaps, even dear. Just

going to work.

I'm reminded of the times that I was in the throes of grief when my father and brother died. It is somewhat unreal to see a

world carrying on as usual, when there is such a huge gaping wound in your heart and your world has seemed to stop.

But, the world does go on, as it should, to deliver a different message. A message of Strength and Resilience. That We as a

Nation will not go quietly away, defeated and in fear to lick our wounds. We will mourn, honor and bury our dead, and

rebuild if possible.

Trying to continue on, remembering, learning and retaining what we can, so that such an unspeakable act of this magnitude

should not take place again. I don't think it would be proper to act as though nothing happened,lest history repeats itself. I can

only liken it to the horrible sinking of the "Titanic", an extreme catastrophe that changed the ship building industry and how

we looked at our world so drastically and dramatically.

A loss of innocence, in-vulnerability, that we as humans are fallible.

I offer many Prayers for peace.

September 10, 2001

Have you ever wanted something and waited patiently for it. Then when you finally get it and you aren't sure you really

wanted or needed it, after all?

I have uncertainties about this journal stuff. But, I appreciate the kind comments, I was afraid I would bore people to death.

I'm back to sleeping every other night or sometimes every third night. (Usually, my dogs are snoring and sleeping in my

chair.lol) I'm just sleep deprived, running on empty. Eventually it balances out. Sometimes, I talk about nothing, until I sort

out a problem, or allow it to surface.

September 10, 2001

I can't do much about others being uncomfortable with my tremors and such, when I've explained about pd and that you can't

catch it.(I've had people ask me that)lol

Of course, I think everyone wants to look nice and feel good about themselves. I'm just very plain and somewhat comfortable

with myself. My Dad was a Mohawk, in his culture, scars were a symbol of strength and character. (Scars mean you have

lived and survived many trials, making you a better, stronger, and greater as a Warrior.)Dad also used parables and

allegories when he talked, trying to make us think.

I suppose my gray hair is more visible than my scars. It bothers my sister more than it bothers me. She says it makes me look

old, saying (for the last 3 years) I should start coloring my hair. It could be one of the reasons, I don't color it.lol

I found that changing my outer appearance (like hair color, weight and such) doesn't change my intrinsic nature. It's like

tatoos, it's not for everybody, and should be for your own self expression and comfort.

At any rate, I'm going to try to find a present for Johnny's birthday (9/26). The Harley shop, about 1 1/2 hours away, should

have some new paraphernalia for him. I may go by and see if my nephew will ride down there with me. The kids are at

school, it's only me and the old dogs, at home. (I have 5 dogs, the oldest are Bubba, 16 & a very grumpy Chloe is 17) I don't

want to stay home and clean the house today. That sucks. Somehow, I imagine there are teachers and editors cringing at my

writing's misuse and or abuse of the English language. Oh well. :D

September 09, 2001

This past week has been a blur, a flurry of activities as the kids started school once again.

On 8/29, Jenni had an accident while driving her Dad's old pick-up (a 1990 Nissan with 203,000 miles on it). Jenni and the

other driver were unharmed. But, the truck was totaled. The other driver (was cited for failure to yield right of way) and his

insurance has been dragging their feet. I don't have the patience to deal with the run around on the phone, I usually end up

frustrated and swearing after I get off the phone. However, Johnny called me while he was at work and asked me to call

them. He had the notion that I can be as tenacious as a pitbull. The Insurance company reps, return his calls now. It should be

settled soon.

Jennifer,17, is a senior this year. (She plans to attend college to be a Math teacher.) Her math teacher recommended Jen for

an advanced Calculus (a College level) class. So we had to go and buy a graphing calculator. The instructor has promised at

least 2 hours of homework for her class every night, and that the students will be required to study at least 1 hour everyday.

Jen says, "Bring it on."... Oh me, I don't know where she gets such a 'tude from.

My poor son, Christopher, hasn't had much of a summer vacation this year. We took him to a routine school physical where

he measured out at 6'-4" and 252 pound, as healthy as a horse 16 year old. The Doctor suggested that he loose about 10-15

pounds, and that maybe football would be a good activity for Chris's large frame work.

Get him away from the play station and such. Since he had passed his summer school classes he was eligible and the coaches

were very enthusiastic about him joining the team. Christopher has seemed to love all the physical work of practices and

learning his new play book. He's down to 245 pounds but gaining lots of muscle, confidence, and co-ordination. He doesn't

have a mean bone in his body, (he apologizes to the boys he tackles) so we are working on that.lol

Thursday night (9/6) was his first game as a second string defensive lineman. Most of the new kids didn't get to play until the

beginning of the 4th quarter. (In football a quarter is 12 minutes, which works out to be about 30 minutes in real time) Our

team was being thoroughly trounced, the score was 42-9. Chris entered as a Defensive Nose Guard (or Tackle). The 2nd

string boys were so ready to go, a little ticked that they didn't get to play, that they were all ready to devour the other team,

which they pretty much did. The other team doubled up on Christopher, but he tackled and knocked them down and another

one (3 boys altogether) with the first play. The final score was 42-23.

I've noticed that Johnny and I, don't look like the other football parents. Christopher and Jennifer say that their friends think

we are really cool. I see myself as a computer nerd.

I'm in the process of filing out my application for Social Security Disability. Filing out the short answer sections of the forms

really isn't that bad. It's been very hard to go from focusing on what I can do to having to make an inventory of what I can't do

and why not.

It's also, the explain how this effects your ability to do... sections that has been hard for me. (I should say, trying to explain in

a short response.)

Several people like Carolyn Gambino, Peggy, and Emily (to name a few) have been gracious and kind enough to offer any

needed help, for which I am most grateful. I've printed out SSDI Tips Posts from the MGH forum, and from the Disability site

here. I'm going to try to continue to slug it out and finish my application. I'm probably making it harder than it really has to be,

anyway.

I wouldn't know what way to turn without the support, advice and comfort of the many kind folks that are here.

Reality bites, sometimes. I ran into a high school friend that I had been very close to at one time. I've visited with her briefly,

here and there, since I've moved back to New York. We were both always so busy. She's very successful and has her own

Beauty Salon.

She keeps talking to my gray hair on top of my head, appearing uncomfortable with my tremors and quirks. I'm think I'm

becoming used to being one of those people that get avoided. Usually it's my own charm that drives people away, (the potty

mouth, Harley and a couple of large tattoos) this time it was PD’s appearance.

September 06, 2001

I think I've learned a lot in the last few months. I've had to learn to just be, to listen to the grass grow. The biggest lesson for

me, has been to be patient with myself. The work-aholic tolls are high for 60-70 hour work weeks for so many years, I

suppose you can still read my own disbelief of how driven I was.

I may be a little over-sensitive at times, but I think everyone has that feeling or fear of saying too much. Sometimes, I

honestly, talk about pd stuff, or life in general, without realizing the impact it may be having on someone else. My chidren

also have this difficulty, at times.

With two teens, growing up, we had to make special "No boogers (sp?) or scab or biology discect stories" at the dining room

table, or during meals (it's good manners) They really are good kids and wonderful people.

I fear scaring people, especially the newly diagnosed, with my graphic descriptions. So you may only hear a cheerful

description of life with pd, and perhaps a stray pd booger story. But the realities and reflections of pd may have the strongest

influence on what comes out in this journal.

I'm new to all this journaling stuff, so I expect I will unintentionally offend someone, or someone will disagree with

something I've said. Hopefully, if that should happen, we can discuss whatever it is.

I can't attempt to make amends for something I've done, if I haven't been told what the problem is. I'm not offering an

appology for being myself. I'm just trying to avoid misunderstandings, by leaving an open door for communication.

I write the way I talk, in spurts. Please, don't be fooled by my writing all these long posts. Sometimes it takes me hours or

days to compile an e-mail or even a reply to one of the forums. A lot of times, I don't say anything (reply to a post or e-mail)

because I'm having an Off day and don't want to darken anyone else's door.

I know there are some things that only another "Old Timer" with pd can immediately understand (not to exclude care partners,

because many of them have earned their Angel's Wings, several times over).

I just want people to know that you can have a very good life, despite the pd diagnosis. That you can live your life on your

own terms, although, it may be a different life than what you had planned.

I suppose that's my point in trying to write all this stuff down. Maybe, it will help someone else, so they won't have to go

through some of the things I did. Or to make it easier, for someone else to know that you aren't alone in all this, by trying to

lessen the feelings of isolation, or pull a few hermits out of the woodwork.

Does anyone know the correct spelling of boogers?

September 04, 2001

I wrote this on June 30,2001

Re-Alignments

I think my priorities have changed greatly in the last few years. I used to feel that as a 'work-aholic', my occupation and

dedication to long hours defined who and what I am. Work was the end-all, be-all. I felt that work gave me an identity, a

reason, place to go, challenges and some structured routines. I was wrong.

Parkinson's disease is just that. A progressive degenerative neurological disease, it doesn't define who and what I am. My

experiences with specialists and neurologists have been varied, due to being diagnosed with pd at 26. I've seen the very best

and the worse of the movement disorder specialist worlds.

I have been eyed by a few Neuros as an experiment, a guinea pig to study, observe, papers to be written, not exactly to my

sole benefit or that of the pd community, but for use in exploring their own career avenues. A thinly or vaguely disguised

degree of exploitation glimmering in their eyes as they rubbed their hands together, nearly in glee.

Parkinson's disease, work, life experiences and the choices we make a long the way, certainly have a heavy influence on who

and what we become. The strain of pd alone can take a hefty toll on you and your family; spiritually, financially, mentally,

and emotionally. But, Life itself can be hard.

Pd can be draining, vexing, or you may find you draw some inspiration from it. To be honest, it seems that the more I fight

with pd, the more it fights with me. I feel like I have to embrace pd as my own beastie, accept it. Yet, without surrendering

my life over to pd. I suppose in an odd way that may make sense to someone other than myself. lol

Maybe I didn't need pd to find out I would be a different kind of person. Maybe I didn't need to have my career, family life

and health needs collide together in a war of wills. To have my stubborn streak tested to such extremes. But, I don't feel that

I'll ever know why I have PD, I just do. I just do the best I can and go about living. It's not always easy, painless, or pretty.

These are some things I've asked myself many times. As each stage of pd develops and changes, the meds are increased, the

seeds of doubts and indecision re-awaken in the back of my head.

Would you be as kind and patient?

Would you have explored your creative side?

Would you have become as sensitive?

Would you be able to let go of bitterness from the past?

Would you forgive as easily?

Would you have found prayer or explore your spiritual nature?

Would you smile and enjoy all the little things as much?

Would you roll that taste of 'death by chocolate' ice cream around, savoring the coolness, the chocolate?

Would your friends and family mean as much?

Would you take the time to let them know how special they are?

Let them know how much they mean to you?

Would you notice the cool satin feel of the grass?

The bright azure sky?

Would music, food, love and life feel so good?

Would you still be just wishing for that Harley of your own?

Would you have thought of a simple picnic on a blanket, with beach towels and drinks with little umbrellas, in the middle of

winter?

Would you have thought of asking your partner for a date?

Would you be sure to tell people the positive things? (Just because we all hear and remember so much of the negative.)

Do you remember being 17, and feeling 'bulletproof'? (the nothing bad happens to us kind of thing)

Or would these kinds of things be taken for granted, instead of nurtured?

Or would you be too busy, living and working to see?

I've been sitting in the background reading a lot. These are just some of my own thoughts I thought I'd throw out there. I hope

it will be of help to someone.

September 04, 2001

I wrote this back in December. It's kind of odd but I thought it fit in to a lot of the stuff that's been going on in my life.

Hopefully all this stuff combined together, will all make sense at some point in time.

12/28/00

Ramblings

I'm not sure if I want to leave these idle ramblings out here for all the world to see. But, here goes.

As a 10 year veteran of pd I tend to sit back and watch things and observe, a lot. I use I a lot because it's the only perspective

that I can really speak from, so please bear with me. No, I'm not so self-absorbed that I set my own needs above others.

Actually, I'm very good at acting like I feel much better than I am. Quietly soldiering on, so to speak.

It serves a dual duty,mostly it saves my pride. It saves others from feeling obliged to do things for me. I would rather that

people chose to do things out of the goodness of their hearts than to ask them, or to have them feel like it's a good and proper

thing to do.

However, it does bite me in the a** occasionaly.

The best analogy of pd that I could make is to tell someone to get mortar mix all over them and wait for it to firm up, not dry.

Or to put on about three pair of sweat shirts, pants and boots or tennies, then jump in the pool. Get out, still dripping. Then try

to do everyday stuff. Nothing grandiose, just brush your teeth, comb your hair, and you know, mascara and liquid eyeliner

must have come straight from Hades.lol

I'm not saying this to scare people. Just to let them know that they should enjoy every waking moment. Savor every minute.

Make everyday count. Life is short and meant to be enjoyed. The little things are what counts. I can't think of any more cliches

to get my point across, so that will have to suffice for now.

Just remember that living with pd is much like looking though a prism. Sometimes things of little consequence look bigger

than they really are, with pd sometimes your emotions are often charged, unbalanced, and hard to focus. You have a

neurological disorder so try to learn to have patience and kindness for yourself as you would with someone else. Finding and

maintaining an inner peace can be as elusive as sleep.

The point is There is A life after a pd dx. Choose your battles wisely because your energy needs to be focused on what is of

importance to you. It may not be the same life as you planned but, make the best of what you can do, instead of feeling

miserable about what you can't do.

To my way of thinking, you have to be good at something. Because of pd, I'm good at breaking dishes, so I don't have to wash

them on a regular basis. It gets expensive. Just teasing here.lol

You can wake up now, I'm done with my lecture. I think it was more for my own benefit than anyone else. I've had this too

long to really help anyone else. Too much of a solitary journey.

September 03, 2001

I'll try to start off in some sort of order, for the people that don't know me, since I'm new to the PLWP journals. Although, I

can't be sure it will come out the way I intend.lol

My name is Tammy. A few years ago, when I stumbled onto the Old Forums, I chose the nickname toadie. Because, I collect

frogs & toad figuirines. I have loved frogs ever since I was a kid & played with the real ones. One of my sisters never shared

my enthusiasm for nature, because she would usually shriek at the toads in her pillowcase, or other wildlife that I so fondly

loved to share with her. She was 10 years older than me and had always thought that it was our "evil" brothers (as she called

them) who were playing mean tricks on her, not her youngest or little 4 year old sister. LOL

I'm a 36 year old female, married a little over 18 years have a 16 year old son (6'-4" & size 15 shoes) & 17 year old

daughter (5'-10") (my great Dane puppies- all legs & feet),I'm only 5'4". I'm a sort of private person so this is kind of hard

for me to figure out what to tell & what to leave out. But, please bear with me. I'll tell you everything you didn't want to

know, anyway. lol

I grew up in Northern NY, graduated H.S. left home & joined the Army for 4 years at 17. My husband and I, met and married

while we were both in the service. I was a medical specialist (somewhat like a nurse's aide in combat boots and camos). I

didn't do very well at separating myself from the patients that I cared for.

In 1986, I was stationed at Fort Bliss, Texas. My husband was stationed at Fort Sam Houton, Texas and my kids were in

New York with my family.I wasn't able to cope with the stress from the separation from my children and husband, I couldn't

eat, sleep, and lived on caffiene and nicotine for days on end. My weight at that point in time plumetted to 92 pounds.

I had an accident. A couple of Army "friends" were joking around, shaking me upside down, to shake change out of my

pockets, when I slid and fell to the concrete floor. The accident caused a hairline fracture at vertabreas C-5, C-6, pulled the

muscles, tendons and ligamants in the back of my head and neck. The specialists believed that my weight (or lack there of)

was the major factor or role in the extent of my injuries. It took nearly two years for all of the soft tissue injuries to heal, and

6-8 months for the hairline fractures to mend. The Army "friends" offered no appologies, disappeared while I was in the

hospital, recovering, being poked, prodded and tested.

I only mention this "freak" accident after noticing that several other pwps also had some kind of history of head, neck injuries

or trauma. Probably just a coincidence I suppose.

After I got out of the service, I stayed home with my children for 4 years. Staying at home, was an unpopular decision in the

late '80s, people often remarked, "Oh, so, you don't work." (an ironic phrase, to me now) But, I wanted to be a "Constant", a

dependable fixture for the kid's ever changing environments and worlds. As, it was very hard to settle down, make friends or

establish any kind of regular life. We had lived in New York for a year, Texas for 4 years, and Alabama, for 10 years. We

had felt like Nomads, packing up entire households and moving,11 or 12 times before Johnny retired in 1995. (Then Johnny

went to school, for Drafting and Design.) Ultimately packing up the house and moving (3 more times) back to New York,

after my Mom had a stroke.

When both of my children were in school, I went back to college for Drafting & Design. In the beginning of my 2nd semester,

November of 1990, I developed tremors in my right hand. I went back and forth to a myriad of Military Doctors, and

Contractor Neuros, for about 6 months.

At any rate, at the library (pre-Internet) I had dug through all kinds of dusty old medical books, some that were very scary and

out of date. It kept coming back to the same dark suspicion. A possibility of Parkinson's Disease. But, a Neuro kept telling me

I had the classic symptoms couldn't possibly have pd, I was too young for it. Maybe it was all in my head or un-resolved

issues. Well, I guess it was "all in my head' after all.

I was 26, in June of 1991, when I was formally diagnosed with parkinsonism. No real explanations, I wasn't really sure what

I was looking at. (The Doctors were reaching, grasping for "Whys" & "Wherefores", they supposed that the pd was caused

from carbon monoxide poisoning in 1988. However, other Doctors decided that I would have to have more brain damage

than what was present to cause pd) This Dr. gave me a list of recommendations for meds to treat pd.

By that time, tremors were on my whole right side & the left was starting to follow. The Neuro I was referred back to, talked

to me as though I was a errant child, told me I should learn to live within my limitations & think about disability instead of

drawing. Giving me lists of "Things I can't Do." Chastising me, for being "willful and defiant".

I got a new doc instead. After a fruitless, frustrating series of trial and error meds, I was started on Sinemet. Before Sinemet,

I was 26 & my husband had to help me tie my shoes, cut my food & that was worse to me than the pd Dx. That med. gave me

my independence back.

I hung on, in Drafting school, and graduated with a 4.0. I had to learn to draw on the board, with a tremor for a year. I had

bought a 48" x 24",big, bulky, and awkward to carry, portable drafting board. I often stayed up late at night, after my kids had

gone to bed, drawing and re-drawing lines for particular weights and thickness for board drawings. Then with meds, I had to

learn to draw all over, and learn to use the mouse again. I'm proud of this achievement because so many had said I couldn't

(draw and shake the way I do.)

Both sides have been engulfed in tremors and claimed by pd for about 7-8 years now. I have a lot of tremors,dystonia,

rigidity, voice difficulties, freezing in chairs or when walking, and so on. When meds kick out I do that stooped shuffle walk

through the house. It's strange to sit the same way all your life and then one day, your legs won't move, and they are just

locked or frozen there, until someone pulls them out from under me, or pushes me along to walk. You pretty much know the

rest.

I've always had tremors, that you can't hide or disguise. I've never been able to be a Closet pwp. In an odd way, I've become

accustomed to tremors, so I don't feel like a 'freak' and I'm not embarrassed by them. I feel that PD places enough restrictions

on me as it is. I refuse to hide at home or to not go out in public because someone else is unable to accept or cope with the

appearance of my disease.

I've seen the good, bad and indifferent ranges of reactions. When I was in college, rude people would talk loudly about being

repulsed, as though I wasn't a real person. Then there are the many types of stares, some of simple curiosity. To me, pity is

destructive. I suppose, I've learned how to discern at least some of the reactions.

I've accumulated a lot of calluses but, sometimes, I do feel self-conscious. Sometimes, I don't ignore the stares, I'll act out,

and stick my tongue out at them, to give them something to really look at. I've been known to flip the bird to some of the more

blatantly rude or meaner people. Sometimes the stares or unkind remarks can just be hurtful.

I was taking Sinemet 25/100, Comtan, and mirapex every 3 1/2 hours, (with vitamin c and e for a total of 510 pills a month

'to look this Good'.) My meds have been adjusted again, so I'm down to 330 pills a month with higher mg level of mirapex. I

took Sinemet cr. for over 8 years and developed some minor problems. dyskenisias that chipped my teeth and pulled

muscles.

Amantadine worked well for about 4 months for me and seemed to stop abruptly. Bounced through Eldepryl (1 yr.) & gave

me Asthma. A rare adverse reaction or so I was told less than 2%. Hard to wake up with asthma at 31.

But, I was officially added to the list of it-happens, again.

I stay pretty busy and I come here because I feel a kinship. But sometimes, I feel like I'm too young to be here, too old to be

here and that I've had pd too long to be of much help for a lot of folks. My dear father, had always said I was born old. I

guess he was right, in more ways than one. I'm supposed to be too young for PD but aren't we all?

I like to eat, feed people, write poetry somewhat, walk a lot, and play with or on computers. I use my left hand for the mouse

because my right one isn't dependable. My kids are fussy, they like to eat on a regular basis and they eat a lot, so they are my

motivation to stay up.

In March of 2000, I was taken out of work for 2 weeks. My meds were changed, Comtan was added. I felt as though I had a

new lease on life. To make a long story short, the time out of work was a wake-up call, and I was able to do something I

never thought I would be able to do. Live out what had only been a dream.

I took a motorcycle safety course and learned to ride on cruiser style 250cc motorcycles, and graduated to a Harley

motorcycle at 35.

It wasn't quite that easy, once I sat on the floor and cried, wailing pitifully, "I'm just a computer geek, why did I ever think I

could do this?"

Because, I can.

I put around 7,000 miles on my bike last year and about 2000 miles on her this year.

I have my little hog, a 1996-883 Hugger that I may bump up to a 1200cc over the winter. My hubby gave me drag pipes and

highway bars for my birthday, chrome skulls and such for Christmas, skeletons for Mother's Day and more chrome for our

anniversary. I know I'm so conventional. lol

I suppose I could go on and on so. I've been saving this up for a while. I think this all should help you understand who and

what I am.

I'm plain, blunt as a 2 x 4 at times, and simple. My work has always been in predominately male oriented feilds,(military, a

fork-lift company, louver company, an industrial food plant) so I tend to be a little bossy. (ok, a lot) I tend to be the quiet and

efficient type, taking care of things. I just do what has to be done. I also have a warped sense of humor.

Well, that's enough about me for a while.

September 06, 2001

Since my journal entries didn't appear, and my new journal appears to be working well. I'm going to copy/paste them. I hope

this will work, here it goes.

September 01, 2001

Way too cool Carol, Gargoyles and Harleys! What more could a girl ask for? They are so beautiful!

Thank you,

toadie

September 17, 2001

I suppose the common thread among all of my seemingly endless chatter is that I have a difficult time settling down to discuss serious issues. I have no wisdom, insight, or understanding for the events of this past week.

I chatter about things I'm comfortable with, trying to gain some sense of balance in these very uneasy, uncertain times.

Turmoil and conflict on a small scale in the home, with kids bickering and the like is hard for me to deal with. Seeing it explode all over the MGH forums, as tempers run hot, patience and tolerances run thin, I think it would be better for me to step back from all of this for a while.

September 17, 2001

It's after 1:00 a.m. again. I slept well last night, so it's likeley that I'm up for the rest of the eve. So maybe, I can tell you a story, a page or chapter from my tiny world. Who knows, these stories may cure insomnia someday.lol

Saturday was a beautiful crisp clear day. It started out about 40 degrees and we had planned to go for a ride on the motorcycles with my oldest brother, Forist. I had planned to ride on the back of Johnny’s bike. Johnny’s Harley Super Glide, is a big beefy 610 pound, blatting and barking beast. When we both ride our bikes together, we enjoy setting off car alarms. hehehe

I was dealing with a kind of settling disappointed but with my condition, I have to be realistic. (I’m still trying to get used to that term, “my condition”) I can only ride when I'm really ON. I have been relegated to relatively short rides of a hundred miles or preferably less. I can still ride my bike but not with the ease and comfort that once gifted me. So I stick to riding up to the store or to my brother’s house and back. Short distances of about 20-40 miles, round trip. It’s taken quite a toll on my pride. But, any ride, even a short ride is better than no ride at all.

My brother and his wife, came over (on his Honda Shadow Spirit) to our house about 10:00 a.m., after the weather warmed up a little. He had his son, Jason, in tow driving his 4 WD pick-up truck. Forist had brought Jason, so that if I wasn’t able to ride any more we could load my bike on the truck, and we could continue on with our trip. I was so happy and grateful at Forist’s thoughtfulness and elated to be able to ride. We weren’t for sure where we were going or for how long, but we were going for a ride.

My Sportser sings it’s own song with a gruff baritone voice. I can’t hear much over her as she belts out her own tune while the wind whistles past. The open straight-aways welcome me, as I kick her shifter up into gear with a solid thunk, and get up to speed. The wind was cold, at times, piercing my leathers, but the sun was so warm. (I suppose it would be much like trying to sit on the hood of your car at 30 - 40 degrees and have someone drive 60 mph. Last year on September 6, I rode to work at 26 degrees, I had to worry about frost bite taking the ends of my numb fingers for 3 days)

I’ve let my hair grow out, so it’s kind of shaggy, long and rather unruly. I stow it in a low ponytail with 2-3 extra elastic bands, down the length of it. My fingers too clumsy to braid. I leave my hair down occasionally, but have to get someone with patience to work the all of knots and knarls out. My once new black logger boots are thoroughly scuffed and worn.(Last year I went through 2 pair of boots.) (I can not write- it's about 1/16" tall tho, sometimes I can't walk very well, but when I'm really ON in a big way, I can ride my bike,lol)

It’s a beautiful day. It’s too cold for bees and there aren’t any other bugs out. No little kids pitching gummy bears out the window of their Mom’s min-van. (It’s tough to show up at work after being assaulted or pelted by toddlers, with a jelly bear candy stuck on your head or face.)

We stopped to eat, I took my meds again. We decided to go to White Face Mountain. A trip from our house, that is almost to the other side of the state, of about 250 miles, one-way. It was too cold for me, the cold makes me stiff and tremors seep in. I was able to ride about 125 miles altogether, before I had to load her up, with very few tears. It was so beautiful outside and I was so happy being able to ride my own bike. I love to be “In the Wind”

The twisting, winding curves of the Adirondacks, that were once a favored haven to me, have become fraught with anxiety. Pd balance disturbances make me feel like I’m being pushed and shoved, it’s difficult to right myself. Anxiety and fear begin to replace the joy, freedom and sense of peace that I have only found when I can ride. My depth perception makes the wide white line on the outer edge of the road appear like a definite drop-off. In my mind, I have come to recognize these things and have been able to talk myself out of them or through them.

The thing that most people don’t realize about riding a motorcycle is that you have to become very aware of your body and what you can do. You must, absolutely know your limits, and ride safely within your skill limitations, there is no faking it, black-top is very unforgiving. Pride is a bitter pill to swallow, but the alternatives can be fatal.

September 16, 2001

gosh,i talk too much

September 15, 2001

The thermometer has dipped to a balmy 35 degrees, a sky the color of India ink is filled with a smattering stars. All appears calm, save for a few stray coyotes calling in the background. I live in a rural area, somewhat wild and woolly. Streams teem with fish, the woods run as far as the eye can see. You can still see herds of deer feeding in the meadows. Black bears amble about, occasionally interloping on residential areas and people. Or is it that man has intruded into their environment or homes?

There is so much to be said about the rugged and untamed beauty of Northern New York. The woods of my childhood called me back, to be at home, after many years of living in the deep South. Truthfully I have become too Northern to be Southern and too Southern to be Northern.

The cold and frigid months of January and February lock in without mercy. The hostile winters with it's 2-3 weeks of solid 25-30 below zero weather, can be a formidable companion. The North winds come howling, roaring with a rage, out of Canada, bringing it’s Arctic Circle breeze.

Hail dances freely upon the tin roof. As a child, I imagined an armored knight gracefully, effortlessly tap dancing across the roof top, with a rhythmic rat-a tat-tat, fleeting and fancy memories. Sleet melds into a shinny glaze upon the roadways. Ice forms and drips from tree branches, bowing the branches of the strongest oak. A 150 year old maple will succumb and split in a barber chair style from the weight of the layers of ice and the winter’s relentless winds pounding.

The power of Nature, stark, raw and uninhibited. Ice floes jamming the rivers, causing flooding the on the plains during January thaws. A short reprieve from winter’s harshness, where temperatures rise above freezing levels, giving the false hope of an early spring. Only to have a deep February frost seep into the landscape, sealing the ground in a 3 foot deep thermafrost. Yes, dirt freezes three feet down. (Or should I say the moisture in the dirt causes it to?)

I remember waiting for the school bus in 25 below zero weather, if your hair is still even slightly damp, your hair will freeze. Steam rises from exposed skin, breathing is very difficult. The air is so cold that it burns your air passages as it’s seers its’ way through. Spring attempts to lure you out into it’s world of blossoms and bright skies.

The summers seldom crack the 90 degree mark, and when it does, most people stay indoors. In Alabama, I remember mowing the yard, many times when it was 98 degrees outside, working on my tan. Now, people don’t sit in the sun or worship the sun the same way they did many years ago. All the new discoveries.

I remember many peaceful afternoons, spent acquiring a tan. Listening to all the birds. Resting my eyes, as the sun dappled through tree leaves and onto my eye lids. Light reflecting, glowing in the gentle summer’s warm breeze.

September 14, 2001

I've been ambling through the house, trying to figure out what I'm supposed to be doing. I have make lists, of things like what I'm supposed to do, groceries, you know stuff like that. However, I often misplace the notebook with my notes in it. I stopped using those sticky notes because inevitably, I would have a post-it grocery list on my butt.

Everyday little worries seems so far removed from the stark horror, disbelief, and overwhelming loss of life of the terrorist bombings of the World Trade Center, hi-jackings, and Pentagon.

I'm going to try to sort through some of this. Maybe writing it out will help to bring some understanding into the over-whelming confusion of emotions.

I can not even grasp such an abstract idea of a group of people acting together to conceive an idea of the mass murders, plan, orchestrate minute details, and execute, without mercy or remorse the devastation and havoc. Exhorting followers with the outcome, to deliver a message that we as a Nation or "Super Power" are not in-vulnerable.

The hi-jacked planes heavily fueled for cross country trips, used as tools, instruments of death and destruction. To cause the highest impact, largest amount of damage, wreaking highest death tolls, with the minimal amount of effort on the part of the terrorists, their financier, or their ultimate benefactor. The passengers aboard were secondary, of no real significant value to the terrorists.

The most foreign concept to me in all this, is the cold malice and hate. The complete disregaurd of human life.

I had met a Lady named Sunshine briefly, at the PLWP Rally in April in Kentucky. I hope she will not mind my divulging this information here. She is a Flight Attendant, with a beautiful radiant smile, and a very kind heart and gentle soul. Yet, I worried about her, that she had been aboard one of these planes, innocently performing her job duties, until I had news that she was safe.

I can not imagine anyone, Not once giving thought to all of the dead and missing. That there are people who will have no answers (or may never have) for their loved ones where-abouts. There are people that may never have closuer. The un-resolved, unfininished chapters torn from human lives, consequences of devastation, loss, pain and suffering, interjected in so many people's lives.

I am at a loss to fathom or process all of this. I keep thinking of all of the people, and families profoundly effected by this disaster. They were all someone's baby, child, daughter, wife, sister, mother, husband, son, brother, father, perhaps the saddest loss, a life not yet born. They were all touching another person's life. Special to someone, perhaps, even dear. Just going to work.

I'm reminded of the times that I was in the throes of grief when my father and brother died. It is somewhat unreal to see a world carrying on as usual, when there is such a huge gaping wound in your heart and your world has seemed to stop.

But, the world does go on, as it should, to deliver a different message. A message of Strength and Resilience. That We as a Nation will not go quietly away, defeated and in fear to lick our wounds. We will mourn, honor and bury our dead, and rebuild if possible.

Trying to continue on, remembering, learning and retaining what we can, so that such an unspeakable act of this magnitude should not take place again. I don't think it would be proper to act as though nothing happened,lest history repeats itself. I can only liken it to the horrible sinking of the "Titanic", an extreme catastrophe that changed the ship building industry and how we looked at our world so drastically and dramatically.

A loss of innocence, in-vulnerability, that we as humans are fallible.

I offer many Prayers for peace.

September 10, 2001

Have you ever wanted something and waited patiently for it. Then when you finally get it and you aren't sure you really wanted or needed it, after all?

I have uncertainties about this journal stuff. But, I appreciate the kind comments, I was afraid I would bore people to death.

I'm back to sleeping every other night or sometimes every third night. (Usually, my dogs are snoring and sleeping in my chair.lol) I'm just sleep deprived, running on empty. Eventually it balances out. Sometimes, I talk about nothing, until I sort out a problem, or allow it to surface.

September 10, 2001

I can't do much about others being uncomfortable with my tremors and such, when I've explained about pd and that you can't catch it.(I've had people ask me that)lol

Of course, I think everyone wants to look nice and feel good about themselves. I'm just very plain and somewhat comfortable with myself. My Dad was a Mohawk, in his culture, scars were a symbol of strength and character. (Scars mean you have lived and survived many trials, making you a better, stronger, and greater as a Warrior.)Dad also used parables and allegories when he talked, trying to make us think.

I suppose my gray hair is more visible than my scars. It bothers my sister more than it bothers me. She says it makes me look old, saying (for the last 3 years) I should start coloring my hair. It could be one of the reasons, I don't color it.lol

I found that changing my outer appearance (like hair color, weight and such) doesn't change my intrinsic nature. It' color, weight and such) doesn't change my intrinsic nature. It's like tatoos, it's not for everybody, and should be for your own self expression and comfort.

At any rate, I'm going to try to find a present for Johnny's birthday (9/26). The Harley shop, about 1 1/2 hours away, should have some new paraphernalia for him. I may go by and see if my nephew will ride down there with me. The kids are at school, it's only me and the old dogs, at home. (I have 5 dogs, the oldest are Bubba, 16 & a very grumpy Chloe is 17) I don't want to stay home and clean the house today. That sucks. Somehow, I imagine there are teachers and editors cringing at my writing's misuse and or abuse of the English language. Oh well. :D

September 09, 2001

This past week has been a blur, a flurry of activities as the kids started school once again.

On 8/29, Jenni had an accident while driving her Dad's old pick-up (a 1990 Nissan with 203,000 miles on it). Jenni and the other driver were unharmed. But, the truck was totaled. The other driver (was cited for failure to yield right of way) and his insurance has been dragging their feet. I don't have the patience to deal with the run around on the phone, I usually end up frustrated and swearing after I get off the phone. However, Johnny called me while he was at work and asked me to call them. He had the notion that I can be as tenacious as a pitbull. The Insurance company reps, return his calls now. It should be settled soon.

Jennifer,17, is a senior this year. (She plans to attend college to be a Math teacher.) Her math teacher recommended Jen for an advanced Calculus (a College level) class. So we had to go and buy a graphing calculator. The instructor has promised at least 2 hours of homework for her class every night, and that the students will be required to study at least 1 hour everyday. Jen says, "Bring it on."... Oh me, I don't know where she gets such a 'tude from.

My poor son, Christopher, hasn't had much of a summer vacation this year. We took him to a routine school physical where he measured out at 6'-4" and 252 pound, as healthy as a horse 16 year old. The Doctor suggested that he loose about 10-15 pounds, and that maybe football would be a good activity for Chris's large frame work.

Get him away from the play station and such. Since he had passed his summer school classes he was eligible and the coaches were very enthusiastic about him joining the team. Christopher has seemed to love all the physical work of practices and learning his new play book. He's down to 245 pounds but gaining lots of muscle, confidence, and co-ordination. He doesn't have a mean bone in his body, (he apologizes to the boys he tackles) so we are working on that.lol

Thursday night (9/6) was his first game as a second string defensive lineman. Most of the new kids didn't get to play until the beginning of the 4th quarter. (In football a quarter is 12 minutes, which works out to be about 30 minutes in real time) Our team was being thoroughly trounced, the score was 42-9. Chris entered as a Defensive Nose Guard (or Tackle). The 2nd string boys were so ready to go, a little ticked that they didn't get to play, that they were all ready to devour the other team, which they pretty much did. The other team doubled up on Christopher, but he tackled and knocked them down and another one (3 boys altogether) with the first play. The final score was 42-23.

I've noticed that Johnny and I, don't look like the other football parents. Christopher and Jennifer say that their friends think we are really cool. I see myself as a computer nerd.

I'm in the process of filing out my application for Social Security Disability. Filing out the short answer sections of the forms really isn't that bad. It's been very hard to go from focusing on what I can do to having to make an inventory of what I can't do and why not.

It's also, the explain how this effects your ability to do... sections that has been hard for me. (I should say, trying to explain in a short response.)

Several people like Carolyn Gambino, Peggy, and Emily (to name a few) have been gracious and kind enough to offer any needed help, for which I am most grateful. I've printed out SSDI Tips Posts from the MGH forum, and from the Disability site here. I'm going to try to continue to slug it out and finish my application. I'm probably making it harder than it really has to be, anyway.

I wouldn't know what way to turn without the support, advice and comfort of the many kind folks that are here.

Reality bites, sometimes. I ran into a high school friend that I had been very close to at one time. I've visited with her briefly, here and there, since I've moved back to New York. We were both always so busy. She's very successful and has her own Beauty Salon.

She keeps talking to my gray hair on top of my head, appearing uncomfortable with my tremors and quirks. I'm think I'm becoming used to being one of those people that get avoided. Usually it's my own charm that drives people away, (the potty mouth, Harley and a couple of large tattoos) this time it was PD’s appearance.

September 06, 2001

I think I've learned a lot in the last few months. I've had to learn to just be, to listen to the grass grow. The biggest lesson for me, has been to be patient with myself. The work-aholic tolls are high for 60-70 hour work weeks for so many years, I suppose you can still read my own disbelief of how driven I was.

I may be a little over-sensitive at times, but I think everyone has that feeling or fear of saying too much. Sometimes, I honestly, talk about pd stuff, or life in general, without realizing the impact it may be having on someone else. My chidren also have this difficulty, at times.

With two teens, growing up, we had to make special "No boogers (sp?) or scab or biology discect stories" at the dining room table, or during meals (it's good manners) They really are good kids and wonderful people.

I fear scaring people, especially the newly diagnosed, with my graphic descriptions. So you may only hear a cheerful description of life with pd, and perhaps a stray pd booger story. But the realities and reflections of pd may have the strongest influence on what comes out in this journal.

I'm new to all this journaling stuff, so I expect I will unintentionally offend someone, or someone will disagree with something I've said. Hopefully, if that should happen, we can discuss whatever it is.

I can't attempt to make amends for something I've done, if I haven't been told what the problem is. I'm not offering an appology for being myself. I'm just trying to avoid misunderstandings, by leaving an open door for communication.

I write the way I talk, in spurts. Please, don't be fooled by my writing all these long posts. Sometimes it takes me hours or days to compile an e-mail or even a reply to one of the forums. A lot of times, I don't say anything (reply to a post or e-mail) because I'm having an Off day and don't want to darken anyone else's door.

I know there are some things that only another "Old Timer" with pd can immediately understand (not to exclude care partners, because many of them have earned their Angel's Wings, several times over).

I just want people to know that you can have a very good life, despite the pd diagnosis. That you can live your life on your own terms, although, it may be a different life than what you had planned.

I suppose that's my point in trying to write all this stuff down. Maybe, it will help someone else, so they won't have to go through some of the things I did. Or to make it easier, for someone else to know that you aren't alone in all this, by trying to lessen the feelings of isolation, or pull a few hermits out of the woodwork.

Does anyone know the correct spelling of boogers?

September 06, 2001

September 04, 2001

I wrote this on June 30,2001

Re-Alignments

I think my priorities have changed greatly in the last few years. I used to feel that as a 'work-aholic', my occupation and dedication to long hours defined who and what I am. Work was the end-all, be-all. I felt that work gave me an identity, a reason, place to go, challenges and some structured routines. I was wrong.

Parkinson's disease is just that. A progressive degenerative neurological disease, it doesn't define who and what I am. My experiences with specialists and neurologists have been varied, due to being diagnosed with pd at 26. I've seen the very best and the worse of the movement disorder specialist worlds.

I have been eyed by a few Neuros as an experiment, a guinea pig to study, observe, papers to be written, not exactly to my sole benefit or that of the pd community, but for use in exploring their own career avenues. A thinly or vaguely disguised degree of exploitation glimmering in their eyes as they rubbed their hands together, nearly in glee.

Parkinson's disease, work, life experiences and the choices we make a long the way, certainly have a heavy influence on who and what we become. The strain of pd alone can take a hefty toll on you and your family; spiritually, financially, mentally, and emotionally. But, Life itself can be hard.

Pd can be draining, vexing, or you may find you draw some inspiration from it. To be honest, it seems that the more I fight with pd, the more it fights with me. I feel like I have to embrace pd as my own beastie, accept it. Yet, without surrendering my life over to pd. I suppose in an odd way that may make sense to someone other than myself. lol

Maybe I didn't need pd to find out I would be a different kind of person. Maybe I didn't need to have my career, family life and health needs collide together in a war of wills. To have my stubborn streak tested to such extremes. But, I don't feel that I'll ever know why I have PD, I just do. I just do the best I can and go about living. It's not always easy, painless, or pretty.

These are some things I've asked myself many times. As each stage of pd develops and changes, the meds are increased, the seeds of doubts and indecision re-awaken in the back of my head.

Would you be as kind and patient?

Would you have explored your creative side?

Would you have become as sensitive?

Would you be able to let go of bitterness from the past?

Would you forgive as easily?

Would you have found prayer or explore your spiritual nature?

Would you smile and enjoy all the little things as much?

Would you roll that taste of 'death by chocolate' ice cream around, savoring the coolness, the chocolate?

Would your friends and family mean as much?

Would you take the time to let them know how special they are?

Let them know how much they mean to you?

Would you notice the cool satin feel of the grass?

The bright azure sky?

Would music, food, love and life feel so good?

Would you still be just wishing for that Harley of your own?

Would you have thought of a simple picnic on a blanket, with beach towels and drinks with little umbrellas, in the middle of winter?

Would you have thought of asking your partner for a date?

Would you be sure to tell people the positive things? (Just because we all hear and remember so much of the negative.)

Do you remember being 17, and feeling 'bulletproof'? (the nothing bad happens to us kind of thing)

Or would these kinds of things be taken for granted, instead of nurtured?

Or would you be too busy, living and working to see?

I've been sitting in the background reading a lot. These are just some of my own thoughts I thought I'd throw out there. I hope it will be of help to someone.

September 06, 2001

September 04, 2001

I wrote this back in December. It's kind of odd but I thought it fit in to a lot of the stuff that's been going on in my life. Hopefully all this stuff combined together, will all make sense at some point in time.

12/28/00

Ramblings

I'm not sure if I want to leave these idle ramblings out here for all the world to see. But, here goes.

As a 10 year veteran of pd I tend to sit back and watch things and observe, a lot. I use I a lot because it's the only perspective that I can really speak from, so please bear with me. No, I'm not so self-absorbed that I set my own needs above others. Actually, I'm very good at acting like I feel much better than I am. Quietly soldiering on, so to speak.

It serves a dual duty,mostly it saves my pride. It saves others from feeling obliged to do things for me. I would rather that people chose to do things out of the goodness of their hearts than to ask them, or to have them feel like it's a good and proper thing to do.

However, it does bite me in the a** occasionaly.

The best analogy of pd that I could make is to tell someone to get mortar mix all over them and wait for it to firm up, not dry. Or to put on about three pair of sweat shirts, pants and boots or tennies, then jump in the pool. Get out, still dripping. Then try to do everyday stuff. Nothing grandiose, just brush your teeth, comb your hair, and you know, mascara and liquid eyeliner must have come straight from Hades.lol

I'm not saying this to scare people. Just to let them know that they should enjoy every waking moment. Savor every minute. Make everyday count. Life is short and meant to be enjoyed. The little things are what counts. I can't think of any more cliches to get my point across, so that will have to suffice for now.

Just remember that living with pd is much like looking though a prism. Sometimes things of little consequence look bigger than they really are, with pd sometimes your emotions are often charged, unbalanced, and hard to focus. You have a neurological disorder so try to learn to have patience and kindness for yourself as you would with someone else. Finding and maintaining an inner peace can be as elusive as sleep.

The point is There is A life after a pd dx. Choose your battles wisely because your energy needs to be focused on what is of importance to you. It may not be the same life as you planned but, make the best of what you can do, instead of feeling miserable about what you can't do.

To my way of thinking, you have to be good at something. Because of pd, I'm good at breaking dishes, so I don't have to wash them on a regular basis. It gets expensive. Just teasing here.lol

You can wake up now, I'm done with my lecture. I think it was more for my own benefit than anyone else. I've had this too long to really help anyone else. Too much of a solitary journey.

September 06, 2001

September 03, 2001

I'll try to start off in some sort of order, for the people that don't know me, since I'm new to the PLWP journals. Although, I can't be sure it will come out the way I intend.lol

My name is Tammy. A few years ago, when I stumbled onto the Old Forums, I chose the nickname toadie. Because, I collect frogs & toad figuirines. I have loved frogs ever since I was a kid & played with the real ones. One of my sisters never shared my enthusiasm for nature, because she would usually shriek at the toads in her pillowcase, or other wildlife that I so fondly loved to share with her. She was 10 years older than me and had always thought that it was our "evil" brothers (as she called them) who were playing mean tricks on her, not her youngest or little 4 year old sister. LOL

I'm a 36 year old female, married a little over 18 years have a 16 year old son (6'-4" & size 15 shoes) & 17 year old daughter (5'-10") (my great Dane puppies- all legs & feet),I'm only 5'4". I'm a sort of private person so this is kind of hard for me to figure out what to tell & what to leave out. But, please bear with me. I'll tell you everything you didn't want to know, anyway. lol

I grew up in Northern NY, graduated H.S. left home & joined the Army for 4 years at 17. My husband and I, met and married while we were both in the service. I was a medical specialist (somewhat like a nurse's aide in combat boots and camos). I didn't do very well at separating myself from the patients that I cared for.

In 1986, I was stationed at Fort Bliss, Texas. My husband was stationed at Fort Sam Houton, Texas and my kids were in New York with my family.I wasn't able to cope with the stress from the separation from my children and husband, I couldn't eat, sleep, and lived on caffiene and nicotine for days on end. My weight at that point in time plumetted to 92 pounds.

I had an accident. A couple of Army "friends" were joking around, shaking me upside down, to shake change out of my pockets, when I slid and fell to the concrete floor. The accident caused a hairline fracture at vertabreas C-5, C-6, pulled the muscles, tendons and ligamants in the back of my head and neck. The specialists believed that my weight (or lack there of) was the major factor or role in the extent of my injuries. It took nearly two years for all of the soft tissue injuries to heal, and 6-8 months for the hairline fractures to mend. The Army "friends" offered no appologies, disappeared while I was in the hospital, recovering, being poked, prodded and tested.

I only mention this "freak" accident after noticing that several other pwps also had some kind of history of head, neck injuries or trauma. Probably just a coincidence I suppose.

After I got out of the service, I stayed home with my children for 4 years. Staying at home, was an unpopular decision in the late '80s, people often remarked, "Oh, so, you don't work." (an ironic phrase, to me now) But, I wanted to be a "Constant", a dependable fixture for the kid's ever changing environments and worlds. As, it was very hard to settle down, make friends or establish any kind of regular life. We had lived in New York for a year, Texas for 4 years, and Alabama, for 10 years. We had felt like Nomads, packing up entire households and moving,11 or 12 times before Johnny retired in 1995. (Then Johnny went to school, for Drafting and Design.) Ultimately packing up the house and moving (3 more times) back to New York, after my Mom had a stroke.

When both of my children were in school, I went back to college for Drafting & Design. In the beginning of my 2nd semester, November of 1990, I developed tremors in my right hand. I went back and forth to a myriad of Military Doctors, and Contractor Neuros, for about 6 months.

At any rate, at the library (pre-Internet) I had dug through all kinds of dusty old medical books, some that were very scary and out of date. It kept coming back to the same dark suspicion. A possibility of Parkinson's Disease. But, a Neuro kept telling me I had the classic symptoms couldn't possibly have pd, I was too young for it. Maybe it was all in my head or un-resolved issues. Well, I guess it was "all in my head' after all.

I was 26, in June of 1991, when I was formally diagnosed with parkinsonism. No real explanations, I wasn't really sure what I was looking at. (The Doctors were reaching, grasping for "Whys" & "Wherefores", they supposed that the pd was caused from carbon monoxide poisoning in 1988. However, other Doctors decided that I would have to have more brain damage than what was present to cause pd) This Dr. gave me a list of recommendations for meds to treat pd.

By that time, tremors were on my whole right side & the left was starting to follow. The Neuro I was referred back to, talked to me as though I was a errant child, told me I should learn to live within my limitations & think about disability instead of drawing. Giving me lists of "Things I can't Do." Chastising me, for being "willful and defiant".

I got a new doc instead. After a fruitless, frustrating series of trial and error meds, I was started on Sinemet. Before Sinemet, I was 26 & my husband had to help me tie my shoes, cut my food & that was worse to me than the pd Dx. That med. gave me my independence back.

I hung on, in Drafting school, and graduated with a 4.0. I had to learn to draw on the board, with a tremor for a year. I had bought a 48" x 24",big, bulky, and awkward to carry, portable drafting board. I often stayed up late at night, after my kids had gone to bed, drawing and re-drawing lines for particular weights and thickness for board drawings. Then with meds, I had to learn to draw all over, and learn to use the mouse again. I'm proud of this achievement because so many had said I couldn't (draw and shake the way I do.)

Both sides have been engulfed in tremors and claimed by pd for about 7-8 years now. I have a lot of tremors,dystonia, rigidity, voice difficulties, freezing in chairs or when walking, and so on. When meds kick out I do that stooped shuffle walk through the house. It's strange to sit the same way all your life and then one day, your legs won't move, and they are just locked or frozen there, until someone pulls them out from under me, or pushes me along to walk. You pretty much know the rest.

I've always had tremors, that you can't hide or disguise. I've never been able to be a Closet pwp. In an odd way, I've become accustomed to tremors, so I don't feel like a 'freak' and I'm not embarrassed by them. I feel that PD places enough restrictions on me as it is. I refuse to hide at home or to not go out in public because someone else is unable to accept or cope with the appearance of my disease.

I've seen the good, bad and indifferent ranges of reactions. When I was in college, rude people would talk loudly about being repulsed, as though I wasn't a real person. Then there are the many types of stares, some of simple curiosity. To me, pity is destructive. I suppose, I've learned how to discern at least some of the reactions.

I've accumulated a lot of calluses but, sometimes, I do feel self-conscious. Sometimes, I don't ignore the stares, I'll act out, and stick my tongue out at them, to give them something to really look at. I've been known to flip the bird to some of the more blatantly rude or meaner people. Sometimes the stares or unkind remarks can just be hurtful.

I was taking Sinemet 25/100, Comtan, and mirapex every 3 1/2 hours, (with vitamin c and e for a total of 510 pills a month 'to look this Good'.) My meds have been adjusted again, so I'm down to 330 pills a month with higher mg level of mirapex. I took Sinemet cr. for over 8 years and developed some minor problems. dyskenisias that chipped my teeth and pulled muscles.

Amantadine worked well for about 4 months for me and seemed to stop abruptly. Bounced through Eldepryl (1 yr.) & gave me Asthma. A rare adverse reaction or so I was told less than 2%. Hard to wake up with asthma at 31.

But, I was officially added to the list of it-happens, again.

I stay pretty busy and I come here because I feel a kinship. But sometimes, I feel like I'm too young to be here, too old to be here and that I've had pd too long to be of much help for a lot of folks. My dear father, had always said I was born old. I guess he was right, in more ways than one. I'm supposed to be too young for PD but aren't we all?

I like to eat, feed people, write poetry somewhat, walk a lot, and play with or on computers. I use my left hand for the mouse because my right one isn't dependable. My kids are fussy, they like to eat on a regular basis and they eat a lot, so they are my motivation to stay up.

In March of 2000, I was taken out of work for 2 weeks. My meds were changed, Comtan was added. I felt as though I had a new lease on life. To make a long story short, the time out of work was a wake-up call, and I was able to do something I never thought I would be able to do. Live out what had only been a dream.

I took a motorcycle safety course and learned to ride on cruiser style 250cc motorcycles, and graduated to a Harley motorcycle at 35.

It wasn't quite that easy, once I sat on the floor and cried, wailing pitifully, "I'm just a computer geek, why did I ever think I could do this?"

Because, I can.

I put around 7,000 miles on my bike last year and about 2000 miles on her this year.

I have my little hog, a 1996-883 Hugger that I may bump up to a 1200cc over the winter. My hubby gave me drag pipes and highway bars for my birthday, chrome skulls and such for Christmas, skeletons for Mother's Day and more chrome for our anniversary. I know I'm so conventional. lol

I suppose I could go on and on so. I've been saving this up for a while. I think this all should help you understand who and what I am.

I'm plain, blunt as a 2 x 4 at times, and simple. My work has always been in predominately male oriented feilds,(military, a fork-lift company, louver company, an industrial food plant) so I tend to be a little bossy. (ok, a lot) I tend to be the quiet and efficient type, taking care of things. I just do what has to be done. I also have a warped sense of humor.

Well, that's enough about me for a while.

September 06, 2001

Since my journal entries didn't appear, and my new journal appears to be working well. I'm going to copy/paste them. I hope this will work, here it goes.

September 01, 2001

Way too cool Carol, Gargoyles and Harleys! What more could a girl ask for? They are so beautiful!

Thank you,

toadie

September 06, 2001

a test?