New-comer - Observations and Questions

[Guest guest]

I have subscribed to this forum since last month. This is my first posting, but I have perused the emails with interest and the site looks well-run and helpful.

I was diagnosed last year with spino-cerebellar atrophy (SCA) - not otherwise specified. Late on-set (50'ies). Possibly sporadic (non-hereditary) as no known family history. The neurologists think it started about 6-7 years ago. They had previously diagnosed me with something else, otherwise I would have looked at SCA earlier.

My primary symptoms are 1) ataxia. I walk with difficulty using a walking stick. I wear a brace (AFO) on my left leg.

2) fatigue coming late in the day (I still work running a business from home).

My wife and I have spent a lot of time searching the Internet for information on SCA, and we still have a lot of web sites on our list that we have not yet had time to cover. Nevertheless, I hope you, who read this, will be able to help me with answers to the following questions:

SOURCES OF INFORMATION

I am looking for web sites that can be consulted regularly for new information, incl. email sites, like this one, newsletters etc.

I have already located the following sites:

Internaf Yahoo Group

National Ataxia Foundation

MGH Braintalk communities

Euro-ataxia newsletter

Friedrich's Ataxia Research Alliance

HIGH FOOT ARCHES

I have high arches. Is this associated with any SCA-like disorders other than Friedrich's Ataxia (FA)? I believe I was born with high arches.

NUTRITIONAL SUPPLEMENTS

Rather than drugs/medication, which I have not had to resort to (yet). I have been taking a batch of various vitamins and minerals for years.

A) There are a number of reports about the use of NAC (N-Acetyl-Cysteine) in conjunction with various vitamins/minerals.

Has anybody on this list tried this; if so, for which SCA and has it worked? It is supposed, among other things, to improve motor

skills and stabilize or slow down the disorder.

Dr. A. ph of Tuft's University has published information about improved motor skills in rats after blueberry consumption, and more recently human trials apparently have shown a 5% improvement in motor skills after the consumption of one cup of blueberries and 10% after eating 2 cups. Has anybody tried it? Would blueberry extract tablets work? They are available.

C) Do you know of anything else that helps?

EXERCISE

I do full range-of-motion and stretches daily, set up partly by a physiotherapist and partly based on exercises for MS and PD patients with a few from the National Ataxia Foundation web site thrown in. In addition, I use an exercycle for my legs and a grinder for my arms, for aerobic exercise.

However, I am very interested in any exercises to specifically help strengthen the legs and improve walking.

How long do you exercise for?

DIET

Are there any dietary restrictions or recommendations?

ALTERNATIVE/COMPLIMENTARY TREATMENTS

Some MS and PD sites mention various treatments (acupuncture, Ayurvedic medecine etc), but I have seen nothing on the SCA

sites. Has anybody come across something that works? Not a cure (that would be terrific!), but to alleviate symptoms.

AFO's

I am interested in exchanging information with anybody that wears an AFO; specifically, do you find that as your condition deteriorates, changes need to be made to the AFO for it to hold the leg in the proper position for walking?

LIFE-SPAN

I gather that some of you out there have lived with this condition for 20 years or more. Would you like to share any secrets for your longer life-span with us?

SPONTANEOUS REMISSION

Finally, does anybody know of any cases of spontaneous remission ('induced ' or otherwise) for our affliction?

I will be grateful for responses to my rather lengthy initial submission. If somebody prefers to email me direct, please feel free to do so.