Re: Tendon Surgery Release?? Question Everyone

[Guest guest]

In a message dated 1/22/04 12:26:50 AM, eross@... writes:

<< Bernie's hamstrings etc are also very tight. I asked his orthopedic

surgeon about the advisability of the surgery, and he said that if we lengthen

them,

they will become weaker. And just get tight again. >>

Sierra's are Tight, she never really complains.....no she cannot stand

up/walk SMA2

Her P/T keeps telling her that if she keeps working hard that she can

stand...she keeps saying working on walking....but I am not so sure how fair

that is

of her...because I really don't know if Sierra can even do that...and it kida

hurts...someone saying your kids gonna walk (when really they probley

won't),,atleast in her case! AAHHH Stressfull for me! Shaylene

[Guest guest]

Does your PT have her standing in a prone stander? That's one of the best

ways to do a long stretch of the hamstrings. Hamstrings will tighten if

there is no agonist (opposite muscel group, in this case the quads) working

against them. Also, she could try something like a mobile prone or gait

trainer to get her upright easily. She may or may not be able to walk but,

you try to delay contractures as long as possible. Does Sierra wear any

orthotics? Have they tried taping or using wrap on her legs to give her

some support in her knees? I've noticed it's really difficult to find PT's

in our area who understand the SMA process.

Beth T the OT

Re: Tendon Surgery Release?? Question Everyone

In a message dated 1/22/04 12:26:50 AM, eross@... writes:

<< Bernie's hamstrings etc are also very tight. I asked his orthopedic

surgeon about the advisability of the surgery, and he said that if we

lengthen them, they will become weaker. And just get tight again. >>

Sierra's are Tight, she never really complains.....no she cannot stand

up/walk SMA2 Her P/T keeps telling her that if she keeps working hard that

she can stand...she keeps saying working on walking....but I am not so sure

how fair that is of her...because I really don't know if Sierra can even do

that...and it kida hurts...someone saying your kids gonna walk (when really

they probley won't),,atleast in her case! AAHHH Stressfull for me! Shaylene

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[Guest guest]

Have you tried getting the kids into a water therapy program? You can

stretch so much easier in the water and the pressure is released from

those TERRIBLE, cruel, and injust standers when in a standing position

or any other stretch of the leg. I've noticed my range of motion has

increased since the PT and it's becoming less painful everytime we do

stretches of the legs (and they're great for feet as well)!

~Kendra

> Does your PT have her standing in a prone stander? That's one of

the best

> ways to do a long stretch of the hamstrings. Hamstrings will tighten if

> there is no agonist (opposite muscel group, in this case the quads)

working

> against them. Also, she could try something like a mobile prone or gait

> trainer to get her upright easily. She may or may not be able to

walk but,

> you try to delay contractures as long as possible. Does Sierra wear any

> orthotics? Have they tried taping or using wrap on her legs to give her

> some support in her knees? I've noticed it's really difficult to

find PT's

> in our area who understand the SMA process.

>

>

> Beth T the OT

>

>

>

> Re: Tendon Surgery Release?? Question Everyone

>

>

> In a message dated 1/22/04 12:26:50 AM, eross@u... writes:

>

> << Bernie's hamstrings etc are also very tight. I asked his orthopedic

> surgeon about the advisability of the surgery, and he said that if we

> lengthen them, they will become weaker. And just get tight again. >>

>

> Sierra's are Tight, she never really complains.....no she cannot stand

> up/walk SMA2 Her P/T keeps telling her that if she keeps working

hard that

> she can stand...she keeps saying working on walking....but I am not

so sure

> how fair that is of her...because I really don't know if Sierra can

even do

> that...and it kida hurts...someone saying your kids gonna walk (when

really

> they probley won't),,atleast in her case! AAHHH Stressfull for me!

Shaylene

>

> A FEW RULES

>

> * The list members come from many backgrounds, ages and beliefs So all

> members most be tolerant and respectful to all members.

>

> * Some adult language and topics (like sexual health, swearing..)

may occur

> occasionally in emails. Over use of inappropriate language will not be

> allowed. If your under 16 ask your parents/gaurdian before you join the

> list.

>

> * No SPAMMING or sending numerous emails unrelated to the topics of

spinal

> muscular atrophy, health, and the daily issues of the disabled.

>

> Post message:

> Subscribe: -subscribe

> Unsubscribe: -unsubscribe

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

> oogroups.com

>

> List manager: (Sexy Mature Artist) Email: Esma1999@a...

>

>

>

>

>

>

>

[Guest guest]

Does Sierra use any braces - AFO, KAFO, RGO?

Bettylou

Sierra's are Tight, she never really complains.....no she cannot stand

up/walk SMA2

Her P/T keeps telling her that if she keeps working hard that she can

stand...she keeps saying working on walking....but I am not so sure how fair

that is

of her...because I really don't know if Sierra can even do that...and it kida

hurts...someone saying your kids gonna walk (when really they probley

won't),,atleast in her case! AAHHH Stressfull for me! Shaylene

[Guest guest]

If my son's PT was telling him that, I would have an absolute fit. When

Brett's grandma (that won't read about SMA) kept telling him that he would

be a big boy and walk someday- I finally had to take her aside and tell her

to STOP saying that. In my opinion, it gave him false hope and he did not

think he would be a big boy if he couldn't walk. I tell everyone including

Brett's therapists/ teachers that we concentrate and vocalize on what Brett

CAN do and not what he might be able to do someday- because it might give

him self esteem issues if he is always thinking about what he can't do and

wonder when he will be able to do it. Just my opinion!

Kristal

Mom to Brett- SMA II- 4 years old

" Life is 10% what happens to you and 90% how you respond to it. " ~anonymous

Visit Brett's website at: http://www.our-sma-angels.com/brett/index.htm