Re: [MSA]

[Guest guest]

, Dr. ph Jankovick at Baylor College of Medicine in Houston is a movement disorder specialist and in my opinion very good.

Ginger

This is again, begging for guidance. Currently, my 73 year oldfather is at a very uncomfortable stage of MSA. He no longer has thestrength to feed himself, he becomes more and more incontinent each day,rarely can even slip his shirt on. One of the saddest things about thisdeal is that my dad spent his entire life taking care of others. He usedto call my mom during the day to make sure she was playing with the kids. He told her he would take care of the house when he got home. Surprisingly, he did!! He encouraged my mother to get a college degree,just in case something happened to him, he taught me to drive when I was 12because we lived in a very rural area, and if someone got sick, we'd needto get them to the hospital. He always tried to plan things out so that allthe bases were covered in the event of a crisis or tragedy. Now, he can'teven plan and carry out a trip from the bedroom the the living room. Everyfew days, he is able to take a few steps with the walker....most of thetime, we have to push him in the wheelchair. He and my mother are homealone about 70% of their waking hours, and my mother is absolutely drained.She's relatively uncooperative, in that she thinks she is the only one whocan care for my dad. Our suggestions are not well heeded, but shesometimes re-thinks situations and changes her mind. At this time, none ofthe family wants to put daddy away, but it looks like our options areextremely limited. Are there any agencies that will come in to the homefor a few hours a day to let the caretaker handle the household chores? Does Medicare assist in paying for such services. We live in theHouston/Baytown area. We are also looking for a neurologist who isfamiliar with this disorder but is not all caught up in the researchaspect. My dad appears to be a textbook case, so there doesn't seem to bea lot of willingness to look beyond the obvious. They keep telling us theycan't cure him. We understand that, I just believe there should be a wayto make him comfortable.Thank you for taking the time to listen to my rantings and ravings. I just wish my mother had access to the internet so that maybe some of her questions could be answered.Thanks so much,

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[Guest guest]

Hi a,

Welcome to the group. Sorry for your mother's troubles. The lack of

response to Sinemet is one clue that can point in the direction of a

diagnosis of MSA or another similar Parkinson Plus disorder.

Some more info can be found at these sites:

Multiple System Atrophy

http://www.emedicine.com/NEURO/topic671.htm

Striatonigral Degeneration (one form of Multiple System Atrophy)

http://www.emedicine.com/neuro/topic354.htm

Take care,

Pam

I dont know if my first email reached this group. I am new to the group and

wanted to ask would anyone out there tell me about their experience with

Striatonigral Degeneration? My mothers doctors first said parkinsons but

now are not sure she has no tremour but has bradykinesia, falls backwards,

frozen facial features, soft voice, small handwriting. she is only

responding a small amount to Sinimet, has no " on " or Off " times, just the

same all the time. can anyone relate to those sypmtoms without the tremor?

she is 74 now, has developed these symptoms in the last three years after

hip surgery. any help would be greatly appreciated thanks paula

[Guest guest]

thanks a lot Pam for writing paula

>

>

> I dont know if my first email reached this group. I am new to the group

and

> wanted to ask would anyone out there tell me about their experience with

> Striatonigral Degeneration? My mothers doctors first said parkinsons but

> now are not sure she has no tremour but has bradykinesia, falls backwards,

> frozen facial features, soft voice, small handwriting. she is only

> responding a small amount to Sinimet, has no " on " or Off " times, just the

> same all the time. can anyone relate to those sypmtoms without the

tremor?

> she is 74 now, has developed these symptoms in the last three years after

> hip surgery. any help would be greatly appreciated thanks paula

>

>

>

> If you do not wish to belong to shydrager, you may

> unsubscribe by sending a blank email to

>

> shydrager-unsubscribe

>

>

>

>

>