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My Dad has hereditary ataxia SCA 6 for about 20 years. He ...

Sent to Health Experts August 04, 2006 9:25 p.m.

My Dad has hereditary ataxia SCA 6 for about 20 years. He has done as well as can be expected, but he has finally stopped coming downstairs, unable to make the transfers, bound up with hypertonia in his legs, unable to sleep at night. We think he is his last days and need to know how to keep him comfortable. hospice isn't an option because they don't understand hereditary ataxia. Neither does his GP. We are trying to get in touch with his movement disorder doc at MGH whom we have not been in contact with since he told us Dad's disease has "stopped progressing." He doesn't "get it" either. I saw it in his face 5 years ago, so we stopped seeing him.

Optional Information:
Male , Age: 82

Already Tried:
MGH Neurologist 20 years ago, GP until now. Pauline the pharmacist concerning Dad's feet, which are fine now that he's in bed.

Customer (name blocked for privacy)

Status: Closed Value: $50

Answer
August 04, 2006 10:03 p.m. (37 minutes and 48 seconds later)

ACCEPTED

Dear Customer (name blocked for privacy),

I'm sorry to hear about your father. This can be very difficult for him and the family. I'm very surprised that hospice will not help you. Anyway, I am providing you a link to a support center designed patients and family members who are affected by ALL ataxias:

The National Ataxia Foundation:

2600 Fernbrook Lane
Suite 119
Minneapolis, MN 55447
(763) 553-0020 Phone
(763) 553-0167 Fax

http://www.ataxia.org/

There are no specific treatment for ataxia. Treatment is aimed at treating specific associated problems that occur with the disease. The goal is to keep the patient as comfortable as possible with use of pain medications and treating the complications that can occur with the disease such as

There are medications used for certain types of ataxias such as anticholinergics (trihexyphenidyl, benztropine), dopamine agonists (pramipexole, ropinirole, bromocriptine, pergolide), amantadine, selegiline, and entacapone.

Clinical trials have studied the use of Acetazolamide (250-500 mg/day.) The conclusion: The results suggested that acetazolamide can temporarily reduce the severity of symptoms during the progression of ataxia SCA6. However, the response became weaker after one year of treatment.

I strongly encourage you to contact the National Ataxia Foundation above. Because the treatment is so limited, they will most likely be your best resource. There are also links to support groups for family members who are affected by the disease.

Edited by AnnlynnRN on August 4 2006 at 10:06pm

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