l am a newcomer, and i want to know all about SC... - Ataxia UK

Ataxia UK

4,090 members4,663 posts

l am a newcomer, and i want to know all about SCA2、ataxia and tartarine.

skyasll profile image
14 Replies

我来自中国,于 2021 年 8 月被诊断出患有 SCA2-43。我一直在按照 Joe Peck 先生的建议进行锻炼和服用补充剂。现在病情没有明显进展。我想听听您对丁螺环酮和酒石(一种于 2000 年在日本注册的用于治疗共济失调的药物)的看法。有关欧洲地区 SCA 的最新更新?

Written by
skyasll profile image
skyasll
To view profiles and participate in discussions please or .
Read more about...
14 Replies
CardiCorgi profile image
CardiCorgi

Hi There!

I am aware that buspirone was studied almost 2 decades ago for ataxia and I believe it did show some symptom relief for a small group that was tested, but I have not seen any recent research on it. I think one other person on here asked their doctor if they could try it, but I don't recall hearing any result. I do believe it is mentioned on practicalnuerology.com.

However, if you are following the advice of Mr. Peck you may be interested in the following links that support his most often mentioned supplement:

Trehalose Fast Tracked for Spinocerebellar Ataxia

clinicaltrials.gov/ct2/show...

and

Oral trehalose maybe helpful for patients with spinocerebellar ataxia 3

prd-journal.com/article/S13...

and although this trial is not for SCA it is still looking at oral trehalose as a treatment

Efficacy of Oral Administration of Trehalose in Patients With Parkinson Disease

clinicaltrials.gov/ct2/show...

It seems he may have been on to something after all.

skyasll profile image
skyasll in reply toCardiCorgi

So happy to see your recovery, I also believe that trehalose helps with SCA, in fact, I plan to take 100g/day. Hopefully it will slow down the disease process. I wish you good health.

skyasll profile image
skyasll in reply toCardiCorgi

I have seen some protocols in some Chinese literature for the treatment of SCA with buspirone. Buspirone: (Increase to 5mg twice a day in week 2 and up to 10mg 4 times a day in week 3. (Take this dose thereafter for a total of 3 months/reduce to the maximum tolerated dose if the patient experiences repeated intolerable adverse reactions or discontinue treatment.) I hope this program will be helpful to you. I wish you good health.

abgw2330 profile image
abgw2330 in reply toskyasll

One more question. Do you have his new website forum?

skyasll profile image
skyasll in reply toabgw2330

pubmed.ncbi.nlm.nih.gov/175...

skyasll profile image
skyasll in reply toabgw2330

pubmed.ncbi.nlm.nih.gov/106...

skyasll profile image
skyasll in reply toabgw2330

pubmed.ncbi.nlm.nih.gov/757...

abgw2330 profile image
abgw2330

Hello, I am also new her. You mentioned Mr Joe peck , who is he and how can I make contact? Thanks

skyasll profile image
skyasll in reply toabgw2330

This is a very famous post in the forum. Here is the link for you.healthunlocked.com/ataxia-u....

abgw2330 profile image
abgw2330 in reply toskyasll

Thanks. What form of exercise do you do?

skyasll profile image
skyasll in reply toabgw2330

Elliptical training,cn.bing.com/images/search?q...

Elliptical training
abgw2330 profile image
abgw2330

Thanks

CardiCorgi profile image
CardiCorgi in reply toabgw2330

You may also be interested in this research from Columbia University in New York. It theorizes that any aerobic exercise may be beneficial for people with inherited forms of SCA. If you click on the first two links it takes you to the research. The third link takes you to a blog post updated by Mr. Peck where he explains any changes he has made to his original routine he shared on Health Unlocked.

Phase I Single-Blinded Randomized Controlled Trial Comparing Balance and Aerobic Training in Degenerative Cerebellar Disease

pubmed.ncbi.nlm.nih.gov/323...

there is actually a second larger trial now underway as well

nyp.org/newsletters/prof-ad...

and here is the link to Mr. Peck's blog post (you must go to the end for the latest changes):

longecity.org/forum/topic/1...

skyasll profile image
skyasll in reply toCardiCorgi

These articles are very helpful, thank you!

Not what you're looking for?

You may also like...

Why am I a part of the Ataxia UK community?

Unlike many of you here I am not a sufferer of any Ataxia, nor am I a family member or close friend...
Elle_Mae profile image

membership of Ataxia Uk. I live in France and would like to become a member of Ataxia UK.

However when I fill in the details I have no UK postcode. Can I become a member?
wibblywobbly profile image

Hello all! I am new to this site but I wondered if I could have your help, its regarding Occupational Therapy for Ataxia?

Hello, I am a 2nd year student of Occupational Therapy at University. My older brother has...
heather778 profile image

I am having to reduce my working hours and am terrified about the future. How do people cope financially and emotionally?

I am a 46 yr old single mum and I work 16 hrs as a checkout operative. I was diagnosed with ataxia...
jonbon profile image