Use it or lose it therapy, BILL

[Guest guest]

Yo Bill, Wrote you on the 2nd but the computer ate my letter before it was finished. Thank you for writing. I, like you, am a "hopeless optimist." Didn't mean to complain--but ya gotta be aware of a situation before you can deal with it--won't know what I think until I hear what I say--that kind of sorting out procedure process. Jan and I have always "tried harder." His onset for incontinence, impotence, forgetfulness and general physical incapacities emerged 24 years ago. Denial and stubborness plus extreme intelligence carried him for years. His gentle personality and loner pursuits helped also. Spasm meds became useless 3 years ago. Several rehab institutionalizations after hospitalization and later home PT sessions helped movement despite dementia and brain atrophy. His devoted eye to eye PT could no longer justify services Xmas 1999. OT didn't help as much as speech and swallowing therapy. BUT passive exercise and massage continued to slow the paralysis. We still use the orthepedic bar and use his "hang on grip" to move his arms while I pulley the ropes. Moving legs that way is too painful now. Neuro and Drs. have given up. Massage lady, too, regretfully. Lifts and chairs , pegs and pumps all tried but BP drops and stamina lessens. With MSA, 74 is pretty good. I custom make contracture cradles, headrests, garments of STYLE plus boots for the guy. Still, we're about used up and it isn't fun. Our "progression" shared may help some early stagers plan ahead and get some action on the cures. Time flies for caregivers. Thanks for all your advice and detailed solutions over the years. Jan and I need and enjoy your friendship. LA Louise in Springhill where Spring has sprung too many leaks.

[Guest guest]

Louise,

Yes, at some point unless they come up with a cure, things will get

too bad. I am writing form experience in hope that some people will

be able to stretch there movement long enough for a cure to appear.

Charlotte gained at least two years due to regular exercise and the PEG.

The PEG and speech therapy have also helped her continue to eat food by

mouth, which helps her general attitude toward life. ) after all,

what would life without chocolate be like )

I think the major problem with keeping the exercise up is a feeling

that it does no good in the mind of the patient and they lose incentive.

However, the patient must realize that even though they can not stand or

walk by themselves, they can still bear weight and help the caregivers

with transfers. The exercise also keeps you out of the fetal position

paralyses that you hear about here. Exercising now, can help your

movement by as much as two years 5-10 years from now. If they find

a cure in 5-10 years, that two years could mean a lot to you. Don't

look for exercise to cure you - it won't! But it may keep you moving

until there is a cure.

Take care, Bill and Charlotte

==========================================

LOUISE JANDEBEUR wrote:

Yo Bill, Wrote

you on the 2nd but the computer ate my letter before it was finished.

Thank you for writing. I, like you, am a "hopeless optimist."

Didn't mean to complain--but ya gotta be aware of a situation before you

can deal with it--won't know what I think until I hear what I say--that

kind of sorting out procedure process. Jan and I have

always "tried harder." His onset for incontinence, impotence, forgetfulness

and general physical incapacities emerged 24 years ago. Denial and

stubborness plus extreme intelligence carried him for years. His

gentle personality and loner pursuits helped also. Spasm meds became

useless 3 years ago. Several rehab institutionalizations after hospitalization

and later home PT sessions helped movement despite dementia and brain

atrophy. His devoted eye to eye PT could no longer justify services Xmas

1999. OT didn't help as much as speech and swallowing therapy.

BUT passive exercise and massage continued to slow the paralysis.

We still use the orthepedic bar and use his "hang on grip" to move his

arms while I pulley the ropes. Moving legs that way is too painful

now. Neuro and Drs. have given up. Massage lady, too, regretfully.

Lifts and chairs , pegs and pumps all tried but BP drops and stamina

lessens. With MSA, 74 is pretty good. I custom make contracture

cradles, headrests, garments of STYLE plus boots for the guy. Still,

we're about used up and it isn't fun. Our "progression" shared may

help some early stagers plan ahead and get some action on the cures.

Time flies for caregivers. Thanks for all your advice and detailed

solutions over the years. Jan and I need and enjoy your friendship.

LA Louise in Springhill where Spring has sprung too many leaks.