Re: My Dad has PLS

November 4, 2000

Hi Gang:

When we were in CT, I was amazed at hoe this PLS effects us all in a

different way. It also bothers me that advice is given out to PLS

people, that is not going to benefit them, in fact it could hurt instead

of help. I know that everyone is desperate to find that magic something

that is going to help. So just be careful,

after having this disease for so long, and not doing extreme exercise, I

still function very well. This is not a criticism, but each individual

reacts differently, so " listen to what your body tells you " .

To me, just " keep walking " !

Rita

*************************************

Some people succeed in spite of their handicap. Others succeed because

of them.

November 4, 2000

Hello Jill,

I rec'd my diagnosis in 1998; symptoms at

that time were only in one leg. Since then, I have experienced increased

difficulty with speech and increased spasticity in my right leg also.

My neurologist told me that I "may" end up in a wheelchair in the

future, 4 to 10 years from then or never. PLS affects everyone

somewhat differently. Most PLS'ers have difficulty with balance to varying

degrees. Using a cane or walker at the earliest sign of a loss

of balance is essential in my humble opinion. Preventing falls minimizes

the chance of serious injuries, e.g., broken hips, etc.

Re: strength in the legs. My personal

experience is that although I have no loss of muscle mass in my legs, my

neuro confirms at each visit that my legs are weaker. You may confer

with your Dad's neuro as to the benefit of having your Dad seen by

a physical therapist, who can provide specific and helpful exercises to

prevent the loss of muscle mass. I'm not a physician,

but my belief is that the apparent weakness is due to the increasing spasticity

in the legs. This is why most MDs and therapists stress stretching

the affected muscles on a regular basis to lessen the chance of

muscle or tendon tears and to decrease the spasticity as much as possible.

I regret to hear of your Dad's diagnosis but

encourage you to continue to ask questions here. Folks will respond

and share their personal PLS experiences. I haven't seen any neurologists'

comments here yet but there are many patients who can give you their laymen's

insight and maybe better prepare you to ask specific questions of your

Dad's doctor. I hope this was helpful.

Regards,

Jill Cole wrote:

Hi, I have a question? My Dad has had PLS

for 2 yrs now. It has

mostly affected his speech and he is working on getting a palate

lift

made to help him with his speech. the dentist is positive that

it

will help him. But lately he is having more trouble walking, he

is

getting pretty off balance. He uses a cane. Is there anything to

help

him get more strength back in his legs? Or will he end up

in a

wheelchair? He is 75 yrs old. Any info would be appreciated.

I

figured you will know cause you have the same illness. Thankyou

verymuch for your help. Jill

jac028@...

November 4, 2000

Hi Jill,

Jane will be 72 on December 1st.She uses a walker around the house

and we use a wheelchair if we go shopping or on other related trips that

would require extended walking , mostly because she tires easily (a not

uncommon sympton for PLS'rs).She also has a " Lift Chair " in the living room

that helps her get up and down.

Now the answer to your BIG question....I doubt that there is much that

can be done to help him get more strength back in his legs since PLS is

generally progressive.HOWEVER , Jane does get benefit from stretching

exercises in the morning and she goes to the swimming pool every day that we

are home or the weather is right for about an hour (we live in

Florida ).although not everyone benefits from exercise , most of the folks

seem to get some benefit,

Perhaps some advice from a physical theapist can help.

Also, there are medications to consider for the spasticity (ie:Baclofen

etc.).

Jane also has speech problems , however she has been told that ,in

her case , a lift will not help

Stay tuned to PLS-FRIENDS and you will be surprised at what you can

learn from all the wonderful people here ! God Bless You.....Bob

My Dad has PLS

> Hi, I have a question? My Dad has had PLS for 2 yrs now. It has

> mostly affected his speech and he is working on getting a palate lift

> made to help him with his speech. the dentist is positive that it

> will help him. But lately he is having more trouble walking, he is

> getting pretty off balance. He uses a cane. Is there anything to help

> him get more strength back in his legs? Or will he end up in a

> wheelchair? He is 75 yrs old. Any info would be appreciated. I

> figured you will know cause you have the same illness. Thankyou

> verymuch for your help. Jill jac028@...

>

November 4, 2000

Hi Jill,

I have had PLS for at least 14 years. I believe that exercise is very

helpful in maintaining strength. It does not have to be strenuous, but the

key is that it be regular. Even a few minutes per day of gentle moving and

stretching will help. It is very important that your Dad makes sure that he

does not fall--that can do a lot of damage. I have found that a walker

gives me greater stability and support than a cane. Back to the

exercise--perhaps he can regain some of the strength he has lost, maybe not.

PLS is a progressive disease. I think the important issue is to do

something to halt the loss of strength, or at least slow it down. Good luck

to your Dad. He's lucky to have such a supportive daughter.

Dolores