A comment and a question about therapy

[Guest guest]

Dear All,

Allow me to introduce myself. My name’s Lielén, I live in Venezuela, I

belong to the Venezuelan FSMA chapter. Helen Baldwin included me to this

group. I read your emails when time lets me. And I am really impressed with

the activity of the group. First of anything, please, excuse me in advanced

for my grammar errors, as English is not my native language.

Writing to the group was not my intention, now, after reading your latest

emails, I would like to add a comment to the therapy concerns, as well as a

question if it’s fine to you.

I was also diagnosed with SMA. For many years I did not receive therapy. In

my early ‘20s I started to have therapy sessions, and it’s been of great

benefit. In that moment I was not aware of many things about SMA (as there

was no much information available in our country, still mostly the same, but

we are working hard to change it), somehow, I could observe that with the

therapy I recovered strength in all my body, muscle tone, flexibility, and

more improvements. There are ways to do therapy without letting the muscles

get tired (I understood you called this “burn”, am I right?). In fact,

muscles loose their strength if they are not active, for this reason, for

more weak one can be, movement, a proper therapy which doesn’t tire the

muscles, etc., will maintain physical conditions and, perhaps, like my case,

even get improvements. Also, we have observed how SMA patients get better

physical conditions while practice therapy, swim, etc., so it’s part of our

campaign to make it part of their lives as a condition for quality life.

Now, my question is: how is it that therapy is not working good to you?

Thank you so much.

Best wishes and regards from Venezuela,

Lee

All the suffering in the world arises out of wanting happiness for self. All

happiness in the world arises out of wanting happiness for others.

Shantideva

_____

De: [mailto: ] En nombre

de tshindle@...

Enviado el: Jueves, 21 de Septiembre de 2006 04:13 p.m.

Para:

Asunto: Re: Re: now what?

I met with a physical therapist who did a lot of research on SMA. He told me

pretty much the same thing, any physical therapy or extra exercise will only

burn my muscles out and there would be no benefit. I agree with the cold

weather thing too, it seems harder and harder to make it through winter

every year.

Tom

-------------- Original message --------------

From: " jennifer " <nekrosyscinci (DOT) <mailto:nekrosys%40cinci.rr.com> rr.com>

> I noticed that as soon as the weather gets colder, I seem to get weaker.

My

> husband

> thinks it's because my body is working harder to maintain my body

temperature.

>

> As for physical therapy, it seems like my muscles have a limited amount of

> muscle

> strength per day. If I lift weights or move my good arm a lot, for the

rest of

> the day it's

> virtually useless. But the next day or a couple days after it, I've

usually

> recovered.

>

> Jenn

>

>

>

>

>

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