Re: Re: diagnosis-Delores et. all

June 4, 2005

Hi Delores,

Strange you should mention the sitting/balancing problem. When I was first

sent to a neuro, I told him while at work, I was having a hard time making

turns. I would walk from one area to another, go through a doorway then

turn and wind up feeling like I was going to tip over!

Once, I was trying to throw something away in the trash and missed. I kept

picking it up and throwing it towards the conainer only to miss again and

again. One of the guys I worked with was looking at me strangely as he saw

me do this strange thing, you see the can was RIGHT IN FRONT OF ME! Oh

thank God-In-Heaven no one else was paying attention to me, as that was so

humiliting. It was the second time I realized something major was really

wrong.

A major muscle problem, followed by a muscle biopsy dx'd me. I did get

somewhat lucky with the doc I have now.

Your doc sounds great. I have one like that, but he isn't into researching

into the disease, unfortunately. I am so sorry you had to stop driving. I

hope I can keep mine up, as I live in the 'burbs' and don't have the help or

energy to walk where needed.

God bless,

Hazelpone

Re: Re: diagnosis

> When I was still able to make it to make desk and was working it was sort

> of comical (in a way) every time I would start to leave my workstation the

> girls that worked on both sides of me immediately hit the floor and out

> into the hall as no one ever knew which way my legs were goinf to take me.

> I might plan to go " south " BUT my brains didn't get that message to my

> feet and I at time would make a U-turn and be heading " north " . Another

> " funtime " I experienced was when I was visiting my cousin and his wife at

> Hollister, MO, we went to a show in Branson and I wasn't using a walking

> aid at that time but my legs were really a problem. I got up to go to the

> restroom and as I was going out the aisle and I virtually " set down " on a

> total strangers lap. I was so humiliated that I just pulled myself up and

> said to the lady, " excuse me but you're very soft " . I had regained my

> composure by the time I came back and attempted to explained that (at that

> time) I was being treated for parkinsons.

> There was one very consideate girl that sat in the first cubicle on my

> aisle that I had to be very careful when I made that turn or I would

> nearly end up sitting on her. I still have problems about overshooting

> the corners when I come down the aisle from the bathroom to the bedroom or

> on into the living room. I don't know if anyone else has experienced this

> type of problems at anytime or not. If I sit too long then I can hardly

> stay on my feet for a few minutes. This also is rather humiliating,

> while I was still able to work and before I quit driving I was so afraid

> that someone would think I was drunk or ?? so Dr. Baker gave me a note to

> carry in my purse stating my problems

> and he told me if I ever get hauled to jail, just call him and he would

> come get me and explain in person. He is a great person as a well as

> wonderful/caring doctor, he spent so many, many hours researching me and

> my condition that I can never thank him enough as I had no idea he was

> doing that until he called me last December and told me had a correct

> diagnosis for me.

> Thanks, Dolores

>

June 4, 2005

When moved into the end cubicle I stopped one day and warned her that

if I came wandering in not to move as I likely would turn and go back out or I

might just try to sit on her lap. Fortunately, the girls all thought I was

their second Mother so they all tried to take care of me the best they could. I

really felt stupid when I was alone in public and would make one of my

" U-turns " . Before I got my Blazer and could step down to get out of it instead

of having to just step out, one of the security guards used to walk down my way

so he would be on hand if I started to fall on my face. I found out that it was

easier for me to step down when I would be in my son Bill's pickup or if he took

me flying and I could step down to get out of the plane. If we would have

crashed he would never gotten me undone the way he would strap me in. That

reminds me of one of my " pet peaves " , Topeka Transit's Lift for the handicapped

does Not

have seat belts in it and the way they drive a person really needs one, once a

young man said he thought he was going to have to grab me as he thought I was

going to bump my head on the roof. I am only six parking places from the

dumpster but I am afraid to take my trash as I got overbalanced the one time I

tried taking it and just about fell. A little boy that would come ring my

doorbell and talk to me saw me trying to get my balance and called to his Dad

who brought out a chair, a cold cloth and a glass of cold water to me and told

me not to go that far again that he would take my trash for me. Thanks, Dolores

Hpone00 hpone00@...> wrote: