Re: Question for HSP People

[Guest guest]

Jane Anne:

Please !!! If you have to be your wheel chair, except it. You can not,

I repeat, reverse this disease. And what ever it takes to give you

" quality of life " do it!!! Exercise " kills me " and makes me feel worse,

so I don't and won't do it. Try it, and see if you feel better, can't

hurt.

Rita

Luv & Hugs!

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

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

of them.

It's better to have Laugh Wrinkles than Worry Warts!

[Guest guest]

Jane Anne,

Perhaps you are still at the stage that some intensive physical therapy can

help you to get those heel cords stretched. Sometimes it takes an expert to

do " hands on " treatment and then you can reinforce it with the appropriate

exercises to maintain the progress. Left untreated, the situation could

become one that only surgical release can help. That's what happened to our

PLS friend, Chuck. The untreated prolonged spasticity resulted in permanent

contractures.

Dolores

Question for HSP People

> To all,

>

> I am having a terrible time with my legs. When I stand which is 1 or

2 min. at a time and my legs are still bent a little.

> Also my left foot will not go all the way down. I am doing stretching but

this is not helping.

> I do not want to be on scooter or wheel chair all the time. So help

please.

>

> Jane Anne King

[Guest guest]

Hi Jane

how long have you had PLS?Do you feel if you straighten your legs all the way

you will loose your balance?Can you walk?What about leg stretching excersizes?if

you really dont want to be on a scooter or wheel chair you need to be willing to

stretch those muscles esspecially the calf muscles .GEO

Question for HSP People

To all,

I am having a terrible time with my legs. When I stand which is 1 or 2

min. at a time and my legs are still bent a little.

Also my left foot will not go all the way down. I am doing stretching but this

is not helping.

I do not want to be on scooter or wheel chair all the time. So help please.

Jane Anne King

[Guest guest]

Geo,

I do stretches of the leg and also stand a little. I started my

PT yesterday. But am sore today.

Will go back Friday. Hopes this works.

Jane Anne King

Question for HSP People

>

>

> To all,

>

> I am having a terrible time with my legs. When I stand which is 1

or 2 min. at a time and my legs are still bent a little.

> Also my left foot will not go all the way down. I am doing stretching

but this is not helping.

> I do not want to be on scooter or wheel chair all the time. So help

please.

>

> Jane Anne King

>

>

[Guest guest]

Ok so is my experience and opinion with PT and having a degenerate nerve

disease. I don't believe PT will directly or indirectly stop the progression of

nerve degeneration. But I feel that PT will aid other aspects of the body's

heath that aids the side affects and symptoms of the PLS or HSP disease such as

musle spasms.

But it gets to a point that one wakes up with just a certain amount of energy

for each day that needs to be managed so you don't run out. It is like having

gasoline...if your lawnmower only has a little bit of gas than one needs to

decide what part of the lawn to mow cause you don't have enough gas (energy or

stamina) to do the whole yard. Yes PT if you can and don't PT if it robs you

of that limited needed strength for performing required living tasks. mark

sawyer

[Guest guest]

Rita,

I was told after I get the right dose of this medication and

with exercise and my PT then I would walk with my walker. So this is what I

am shooting for.

Jane Anne King

Re: Question for HSP People

> Jane Anne:

>

> Please !!! If you have to be your wheel chair, except it. You can not,

> I repeat, reverse this disease. And what ever it takes to give you

> " quality of life " do it!!! Exercise " kills me " and makes me feel worse,

> so I don't and won't do it. Try it, and see if you feel better, can't

> hurt.

>

> Rita

>

> Luv & Hugs!

>

>

>

>

> *************************************

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

> of them.

>

>

> It's better to have Laugh Wrinkles than Worry Warts!

>

>

>

>

>

>

[Guest guest]

Jane Anne:

You know how I feel, so I won't repeat myself. I know how much you are

struggling to fight this stupid sucky disease. But after talking with

the MDA doctor and my own neurologist this week, w have to accept this

disease and do the best we can. Some it effects differently, and when

we met in land, your symptoms were worse then mine, and your balance

was way off. To me walking is not that important (no flack please, just

my way of dealing with PLS). It is the quality of life, and with my

electric wheels and " Gladi " life is good. So why put yourself under so

much stress (it doesn't help, just makes matter's worse). PT (for me)

forget it. I have little things that I do as I sit, and it suits me

fine, and my doctor's are happy with how I have approached having PLS.

They also feel, that by not over working my body, keeps me from getting

worse to fast.

Sorry to ramble on, but I hear the " pain " and it breaks my heart my

friend. Take care.

Rita

Luv & Hugs!

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

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

of them.

It's better to have Laugh Wrinkles than Worry Warts!

[Guest guest]

Jane Anne,

I support your approach and goal wholeheartedly. While over fatigue and

exhaustion are not good for anyone, Rita is and always has been in the small

minority who believe that PT is not helpful. I don't want to start a feud,

but there is something to that old admonition, " use it or lose it " .

Nothing, but nothing can halt the progression of these terrible disorders,

but I firmly believe that somethings can help slow it down.

Dolores

Re: Question for HSP People

>

>

> > Jane Anne:

> >

> > Please !!! If you have to be your wheel chair, except it. You can not,

> > I repeat, reverse this disease. And what ever it takes to give you

> > " quality of life " do it!!! Exercise " kills me " and makes me feel worse,

> > so I don't and won't do it. Try it, and see if you feel better, can't

> > hurt.

> >

> > Rita

> >

> > Luv & Hugs!

> >

> >

> >

> >

> > *************************************

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

> > of them.

> >

> >

> > It's better to have Laugh Wrinkles than Worry Warts!

> >

> >

> >

> >

> >

> >

[Guest guest]

The part of the story that you're leaving out is that 1) exercise can make

you stronger so you won't run out of " gas " so easily and 2) struggling

against your spastic muscles is fatiguing and PT can help reduce that

spasticity.

Dolores

Re: Question for HSP People

> Ok so is my experience and opinion with PT and having a degenerate nerve

> disease. I don't believe PT will directly or indirectly stop the

progression of

> nerve degeneration. But I feel that PT will aid other aspects of the

body's

> heath that aids the side affects and symptoms of the PLS or HSP disease

such as

> musle spasms.

>

> But it gets to a point that one wakes up with just a certain amount of

energy

> for each day that needs to be managed so you don't run out. It is like

having

> gasoline...if your lawnmower only has a little bit of gas than one needs

to

> decide what part of the lawn to mow cause you don't have enough gas

(energy or

> stamina) to do the whole yard. Yes PT if you can and don't PT if it robs

you

> of that limited needed strength for performing required living tasks.

mark

> sawyer

>

>

>

[Guest guest]

In a message dated 10/16/03 2:35:38 AM Eastern Daylight Time,

d.carron@... writes:

> 1) exercise can make

> you stronger so you won't run out of " gas " so easily

Hi Doloris:

I agree that in many cases PT can make one stronger. However for those that

have a " progressive disability " there often is a state that a person's poor

health is overwhelmed with lack of strength or fatique that prohibits effective

PT. At that point I say don't expend energy if there is no return of

investment.

Your second point is the same as my second point in that PT can help with

muscle spasms (if one has the ability/energy to perform PT).

There are two forms of PT, active and passive. Active PT is when the person

who has the degenerate nerve disease peforms the PT exeercise using their own

strength. Passive PT is when another person or machine performs limb movements

without assistance of the person with the disease.

I am the husband of a totally disabled women, , who has a DX for PLS.

Mark Sawyer

[Guest guest]

Good for you Jane if nothing else it will slow down the progression GEO

Question for HSP People

>

>

> To all,

>

> I am having a terrible time with my legs. When I stand which is 1

or 2 min. at a time and my legs are still bent a little.

> Also my left foot will not go all the way down. I am doing stretching

but this is not helping.

> I do not want to be on scooter or wheel chair all the time. So help

please.

>

> Jane Anne King

>

>

[Guest guest]

Hi Mark,

You are right about being able to perform active exercises. The passive PT

is beneficial in reducing spasticity (and its pain), swelling, and even

increasing the oxygen supply to the body's tissues. Sometimes a person is

unable to move independently, but is still able to contract/relax muscles

against the resistance of the therapist's hands. Even comatose patients in

intensive care units and paraplegics/quadriplegics show benefit from passive

PT.

A little bit of exercise is better than none at all. It really does help to

slow the progression and increase the comfort level of these terrible

disorders. Anything that causes excessive fatigue or pain should be avoided.

" No pain, no gain " is not true in our case. Pool exercise in heated water

often allows people to move in ways that they can't on " land " . The buoyancy

of the water is a movement

enabler and the compression of the water is a tissue stimulator, swelling

reducer and circulation increaser. Endurance and stamina can be built up

slowly and steadily.

Dolores

Re: Question for HSP People

> In a message dated 10/16/03 2:35:38 AM Eastern Daylight Time,

> d.carron@... writes:

>

>

> > 1) exercise can make

> > you stronger so you won't run out of " gas " so easily

>

>

> Hi Doloris:

>

> I agree that in many cases PT can make one stronger. However for those

that

> have a " progressive disability " there often is a state that a person's

poor

> health is overwhelmed with lack of strength or fatique that prohibits

effective

> PT. At that point I say don't expend energy if there is no return of

> investment.

>

> Your second point is the same as my second point in that PT can help with

> muscle spasms (if one has the ability/energy to perform PT).

>

> There are two forms of PT, active and passive. Active PT is when the

person

> who has the degenerate nerve disease peforms the PT exeercise using their

own

> strength. Passive PT is when another person or machine performs limb

movements

> without assistance of the person with the disease.

>

> I am the husband of a totally disabled women, , who has a DX for

PLS.

> Mark Sawyer

>

>

>