ideas/?

March 18, 2005

I have hand rails in my shower and on the front steps. They were

actually there when we bought the house. The gentleman that owned

it before us had parkinsons. It worked out really nice. Especially

the one in the shower. I hold on to it a lot when I am in a crash.

I also use the furniture and walls to get around at times. I have

been known to crawl up the stairs and slide down them. ) quite a

sight. I also have learned how to fall without hurting myself. I do

it like the sky divers do. I just relax and slump to the ground. I

have a cane that I use quite often and a wheel chair that I use out

of the house when I need to. I really would like a power chair, but

need a diagnosis for that. It was hard enough getting the wheel

chair. I do use the ones provided in stores. They make shopping

somewhat possible. I use a handicapped sticker. It has helped a

lot. I do get a lot of dirty looks when I get out of the car. I

look too normal I guess. LOL! I even had trouble at the DMV. She

challenged me about needing a sticker, and accused me of using undue

influence to get my dr to fill out the paper. I was so mad!

I have a little 'nest' by my recliner. It has the phone, food, etc.

Everything that I need close at hand so I don't have to move very

much. I have set up a network of friends at my church that are

willing to come and help me if I need it. I even had a friend who is

a nurse who was out on disability last year sit with me and take

care of me when I was really bad. My son is home right now so I

haven't had to call them recently, but it is nice to know they are

there. I am in the process of doing some remodeling in my kitchen to

make it more easily accessible. Building pantry shelves that are

closer and I don't have to go down stairs to get to. That is all

that I can think of right now. I guess I have adapted in my

attitude too. I used to spend a lot of time being frustrated. I

still do get frustrated, but not as bad as I used to. I decided

that this is the life I have and I will just enjoy the parts that I

can. " I do what I can, when I can " and try not to let it get to me.

Any way I have gone on long enough.

Joanne

March 19, 2005

I play hockey, so you can imagine the looks I get when I get out of

the car carrying my hockey bag and sticks. I don't use a spot often

at the rink, but I can't walk 200 feet carrying all that, but 75 feet

is okay (plus I have extra adrenalin because I'm nervous each time I

play). I have a lot of strength (used to carry two 5-gallon carbuoys

at work, about 80 lbs., not too bad for a woman), but my endurance is

bad *unless* I get very aerobic. Actually, increasing my breathing

rate (not to the point of hyperventilating) helps some of my symptoms

recede temporarily.

My brother said " Boy, you're lucky my paraplegic friend

doesn't " catch you " using your placard and looking healthy " . If I

don't use my placard when I'm " okay " , I get double vision and blurry

vision, in addition to weakness, which of course could impair my

driving. If I'm not driving, I never use it, as if my vision gets

bad and I get weak, I just deal with it, having another adult there

to take care of the kids or me as necessary.

I think if one is continuing to drive, using a placard while still

mobile facilitates that (as of course it does once uses a

wheelchair).

Just for a comparison, I got cut off two weeks ago by someone pulling

into a small handicapped only parking lot. This 20-year-old girl

jumps out of the four-by-four and walks briskly towards the college

buildings. When I finally found another spot, I looked to see if she

had a placard in the car. She did, but by the number on it, she had

gotten it more than 5 years before I got mine (hundreds of thousands

off from mine, current ones are hundreds of thousands above mine).

Let's see - I got mine in 1999 or so, before they knew I had mito.

So she got hers in 1994 or before (when she was 9 or less)? I

suppose it's easy to point fingers at those of us who " look healthy " ,

but it's not like I see everyone else using placards obviously

handicapped (perhaps she was, and I'm judging unfairly, but I didn't

think you could get them before you have a driver's license).

To be honest with you, I wish they sent out renewal stickers once the

placard is " reupped " every few years, so the police could see if it

was indeed a valid placard. There is no fee in our state (I heard

there's a fee in Florida) to renew. I see expired short-term

handicapped parking permits all the time, although usually only a

month or two expired.

Take care,

RH

>

> I have hand rails in my shower and on the front steps. They were

> actually there when we bought the house. The gentleman that owned

> it before us had parkinsons. It worked out really nice.

Especially

> the one in the shower. I hold on to it a lot when I am in a crash.

> I also use the furniture and walls to get around at times. I have

> been known to crawl up the stairs and slide down them. ) quite a

> sight. I also have learned how to fall without hurting myself. I do

> it like the sky divers do. I just relax and slump to the ground. I

> have a cane that I use quite often and a wheel chair that I use out

> of the house when I need to. I really would like a power chair,

but

> need a diagnosis for that. It was hard enough getting the wheel

> chair. I do use the ones provided in stores. They make shopping

> somewhat possible. I use a handicapped sticker. It has helped a

> lot. I do get a lot of dirty looks when I get out of the car. I

> look too normal I guess. LOL! I even had trouble at the DMV. She

> challenged me about needing a sticker, and accused me of using

undue

> influence to get my dr to fill out the paper. I was so mad!

> I have a little 'nest' by my recliner. It has the phone, food,

etc.

> Everything that I need close at hand so I don't have to move very

> much. I have set up a network of friends at my church that are

> willing to come and help me if I need it. I even had a friend who

is

> a nurse who was out on disability last year sit with me and take

> care of me when I was really bad. My son is home right now so I

> haven't had to call them recently, but it is nice to know they are

> there. I am in the process of doing some remodeling in my kitchen

to

> make it more easily accessible. Building pantry shelves that are

> closer and I don't have to go down stairs to get to. That is all

> that I can think of right now. I guess I have adapted in my

> attitude too. I used to spend a lot of time being frustrated. I

> still do get frustrated, but not as bad as I used to. I decided

> that this is the life I have and I will just enjoy the parts that I

> can. " I do what I can, when I can " and try not to let it get to me.

> Any way I have gone on long enough.

> Joanne

March 19, 2005

Hi, this is for Lexia 202,

I too guess, I have MITO, as last December my orthopaedic called me and said

that he

had been researching my case history and he had gone over his files for the last

31 years and felt that he has proof that I did not ever have Parkinsons, but he

felt I needed to find a newrologist who at least listened to him and his theory

that I had been been mis-diagnosed with of Parkinsons in December, 2001and that

he felt that I had a Mychondrial Dysfunction. I am so thankful to him for

taking the time to help me and prove his point. No too long ago I was having a

major problem with nausea and my weight got as down to 95 - 99 pounds. During

that timeframe my doctors gave me compazine suppositories when I wasn't able to

keep phenergan tablets down long enough to do me any good. After my husbands

death in 2002 I had a house auction and moved to a ground level apartment that

had washer/dryer hookups in the hall that looks like a walkin closet with

folding doors. The apartment manager had maintenance install (what I call) a

telephone shower head so bathing and washing my hair

would be easier, I do that while the lady that sweeps the floors, makes my bed

and takes out the trash for me. I don't know if any of this has been helpful in

any way, but that is how I am managing at this time. I use a cane as a walking

aid as my right leg dosn't do much of anything except create a big problem for

me. To prevent falls I have learned to just sit when I start to get

overbalanced, getting up is my biggest problem. I now use my computer chair to

roll around in from room to room to and to put away groceries in the floor level

cabinets. I don't know if any of this has been of any help to you, I hope that

perhaps it will give you a good idea as to how to get from room easier. After

69 years I found that I have no alternative but to take the good with bad.

Your friend, Dolores

bionicgirl_bionic pjcrook@...> wrote: