Re: Digest Number 174

March 17, 1999

Hey all, just wanted to say that I too received email from Dece. Thought I

was losing it, good to know it wasn't just me. I didn't get any mail

yesterday. I'ts been kind of crazy. Kathy/Cambridge

February 27, 2000

Good Morning To all and Welcome to all the new ones to the list!

I have response to several of the posts lately.

GRETCHEN: I fall forward most of the time when I fall and I usually turn

something. Recently, fractured my great toe on right foot in two places.

My knees crackle and pop allot; feels like they are going to " buckle " and do

sometimes and I go down.

Lately, I have trouble getting out of bed every morning because it seems my

lower back is out after sleeping. (can't stand up and walk and have hard

time getting off bed or chair) I'm wondering if this might be a problem due

to muscle atrophy causing more tightness in the tendons and ligaments which

make me very stiff in the mornings until I get every thing stretched out

again. The pain in the lower back can last for several hours after I get up,

but seems the more I get up and move (getting it stretched out) it leaves.

Just very painful to move so its hard! But, then same thing again next

morning. This started happening after I fell and broke my toe, and thought

because I had to stay off feet and just sitting mostly maybe allowed muscles

to atrophy causing the tendons to draw more and just hard to keep them

stretched with muscle changes that have possibly happened. Also it seems

like my lower legs are weaker and I'm stressing my knees and thighs more

now, my legs are tender to the touch all over and knees ache and feel like

someone took a ball bat to them when I walk.

I have a pending order in for a Jazzy Power chair, but Medicare only pays

80% and I can't afford the other 20% our of my family budget. No other

insurance. I have contacted MDA to help me with the rest but I have never

seen one of their Physicians and they require you get a prescription from

their own physicians in order to get help with them. I'm not scheduled to

see the doc (MDA is slow to get you in Here) until Mar. 28 and that is

awhile yet to keep dealing with the pain. Also, I don't know if they will

put me through lots more testing before giving me a prescription or just

look at me and talk to me to determine my need. My physician wanted me to

get a chair back in early Sept this year and I've put off using the

prescription till now but I am seeing the need at least for part of the

time. After I get MDA approval it will still take three more weeks to get

it. Also, for the use of the chair in the kitchen, do any of you know if MDA

will approve paying for a chair with a lift seat? Medicare won't deem it a

necessity and won't pay on that and it is another $998 added to an already

$6000 chair MOL. I know I won't get help one nether one for at least 5 to 7

yrs so I need to get all options I may need in that time for progression

seems to have escalated for me and hasn't slowed in two years. I have great

weakness in forearms and wrist and hands aware very difficult to use; so I

feel in my case the lift would me needed greatly to function. Any ideas on

other sources of help for that other 20% would be appreciated in case MDA

won't help me.

Here is a link sent to me by a Disabled parent of two young children like

myself; She has CP and a very good support for me. Her children are the same

ages as mine so its been good to have her share how she gets everything

done that a mother has to do for young ones.

http://www.familyvillage.wisc.edu/index.htmlx Thought there might be some

of you who would enjoy this site and its suggestions and helps. I've

bookmarker it too.

On the subject of Disabled housing I've appreciated the input from all of

you as to pros and cons; My husband is a builder and we are trying to sell

our house and build a more efficient home for my condition but keeping in

mind the resale value and appeal too. We are looking into stair lifts

because it is more efficient to build a multi-level home by having more use

of the square footage under less roof. But, also considering that even

people who aren't physically challenged don't like to climb stairs ( we or

more spoiled and sedentary in today's times) on a daily basis. so, it helps

to hear how all of you feel and what you would consider; for this is all new

to me! I used to love a multi-level home for my daily work out was built in

to daily living but I have to realize not everyone looks at it this way.

KIM: My hands were the first thing to go; or at least I noticed the problems

with them more. I just accepted the problems with my feet and legs from the

beginning because I'd had mild trouble as a very young child and had learned

to compensate and adapt and even think of it as " normal " for me. When I

started getting severe muscle wasting in the hands and others started

noticing them and asking what was wrong with them, I begin to realize it

wasn't normal. But, even then I thought it was arthritis. But, I would

consider anything you have to do repetitive with your hands to be a concern

for it will stress that area more which in theory can and will cause more

progression. I was a commercial window cleaner with my own business for over

ten years and this really took a toll on my hands. I am barely able to write

a check and get it signed before my hand cramps and freezes or locks on me.

I can't take or pick up coins out of my change purse so I use mostly bills

and empty change into kids piggy banks when it gets too full! LOL Kids love

that ! And typing is a frustration for me, and causes my hands to hurt and

ache severely! There are ways to over come any obstacle but it might pose a

bigger challenge in finding it than the challenge your originally started

with. . so just consider whether you have the energy to expend in any

endeavor. " Count the cost before pursuing. "

Okay this was a long winded reply but I did cover many subjects. TTYL

L Libby

" TODAY IS A GIFT. . TOMORROW ISN'T A PROMISE!

MAKE THE MOST OF THE PRESENT! FOR TOMORROW MAY NEVER COME! "

__________________________________________

NetZero - Defenders of the Free World

Get your FREE Internet Access and Email at

http://www.netzero.net/download/index.html

February 27, 2000

Re: Digest Number 174

>

>My knees crackle and pop allot; feels like they are going to " buckle " and

do

>sometimes and I go down.

>

>Lately, I have trouble getting out of bed every morning because it seems my

>lower back is out after sleeping. (can't stand up and walk and have hard

>time getting off bed or chair) I'm wondering if this might be a problem due

>to muscle atrophy causing more tightness in the tendons and ligaments which

>make me very stiff in the mornings until I get every thing stretched out

>again. Libby, last week my Dr. gave me knee braces to

wear in addition to my afos because, I have lost so much more muscles in my

legs that my knee joints are stressed and the knee caps slip and slide! He

alos said I have lost more thigh muscles, it is getting harder to walk any

distance, my legs tire and hurt. As to your back, I think you are correct

about the muscles and atrophy and tendons stress due to atrophy of those

muscles, I have had more back problems, cramps, achinging stiffness this

past 2 months, I too cannot get out of bed at first, there is stiffness and

pain. It is harder to raise my self out of a chair. It gets better about

mid-morning, then starts in again later in the day. The more I do the worse

it gets. It makes sense that when we loose one muscle, the other remaining

ones are stressed. I am trying to stay out of the KAFO's my Dr. had wanted

me to get them several months ago. This is uncomfortable enough, I don't

like these knee support things!

February 27, 2000

In a message dated 2/27/00 6:11:39 PM Pacific Standard Time,

klydesid@... writes:

<< What I really would like feedback about is whether or not there are others

among you who have experienced the sort of extended " progression-free "

periods of time I have had and if there are others who have had only

affected feet and legs...?

ANY feedback would be great. Thanks.

M

>>

I had no progression for years. I felt so good. Now the stress of my life has

kicked up my weakness and I am about to get AFOs. . I am 31.

February 27, 2000

In a message dated 2/27/00 6:11:39 PM Pacific Standard Time,

klydesid@... writes:

<< What I really would like feedback about is whether or not there are others

among you who have experienced the sort of extended " progression-free "

periods of time I have had and if there are others who have had only

affected feet and legs...?

ANY feedback would be great. Thanks.

M

>>

I had no progression for years. I felt so good. Now the stress of my life has

kicked up my weakness and I am about to get AFOs. . I am 31.

February 27, 2000

Hi everyone. Marc here.

I read and read everyone's thoughtful and useful entries, and I am inspired

by the sharing I've found here, but I have a question which stays in the

front of my mind. It is this: Has everyone experienced an on-going

progression, in regards to symptoms? I am asking because I have experienced

very little progression in the last twenty+ years. It seems I was hit hard

at a young age (probably around five or younger and it progressed until I

was between sixteen and eighteen. I was falling constantly due to increasing

weakness and affected balance in those days. By the time I was fourteen I

was using AFOs and forearm crutches (I still use the crutches but threw out

the AFOs because they caused sores and I wanted to maintain the muscle

strength I had).

In addition to my question about continuous progression, I am curious about

" the hand/feet thing " (my term). I don't really have much trouble with my

hands (thank God - using the crutches would get tricky;0) ). But my feet and

legs are relatively severely affected.

What I really would like feedback about is whether or not there are others

among you who have experienced the sort of extended " progression-free "

periods of time I have had and if there are others who have had only

affected feet and legs...?

ANY feedback would be great. Thanks.

M

February 27, 2000