Re: High foot arch

[Guest guest]

See " Pes Cavus " http://www.boa.ac.uk/bofss/cavusfor.htm

Hugs,

Pam

New-comer - Observations and Questions

>

>

> 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.

>

>

>

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