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Ataxia Support Network

3 Years and counting symptom free

#1

I have SCA1 and have posted links to my regimen many times before. Three years ago when I first saw symptoms, I started with just 2 supplements and today I have expanded the list of supplements I take as well as refined my exercise regimen and diet. I have not felt this good in more than a decade, and I am convinced my alternative therapy works for people who have a polyQ type ataxia, are early in the stages of their disease, and are still able to perform moderate exercise. If the description fits you, I hope you will read my post on Health Unlocked carefully and email me with any questions. As always, never try something based on random comments on the internet without first discussing the issues with a medical professional: https://healthunlocked.com/ataxia-uk/posts/137505041/my-sca1-progression-has-stopped.-my-alternative-therapy-for-sca1

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#2

It’s important for us all to remember that many types of SCA are due to faults in genetic makeup, or Cerebellar Atrophy. Although there have been Clinical Trials involving Trehalose, relating to other conditions as well as ataxia, none of these trials have resulted in Trehalose being officially prescribed as a therapy for SCA.

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#3

It’s also very important to remember that supplements are not regulated. They aren’t even required to contain what the label states they contain let alone the dose that’s claimed. Not that they can’t be good (I take some myself and believe they’ve helped with a nerve issue). Just always be very careful with them and make sure your medical professional is aware of everything you’re doing.

azurelle

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#4

I am delighted for you. You probably managed to sort out more than any neurologist…A couple of points, re meds-supplements, vit D here in England, the strength you are describing ARE ONLY AVAILABLE

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#5

ON PRESCRIPTION…In other words, unless your blood shows low account, one has NO CHANCE TO GET HOLD OF MEDICATED vit. D…The same goes for the other vits, and as the moderator clearly stated I am not gonna break my bank and trawl through internet to get them…(!), as far as I am concerned they can be made of rat poison…Exercise, I am sure helps and if one EVEN can use a treadmill, I am sca2 early enough stage, and so imbalanced DON’T DAREto rock the boat…I am sure many feels the similar way…
The diet- keep it going, I am on Keto and cannot stop talking about its benefits…I am happy to do my physio as in hosp. appointments, couldn’t stand on ONE leg, before ataxia activated (yoga poses)…This is just my comment briefly, going to disact your email thouroghly…

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#6

Some manufacturers of supplements are certified by independent labs. You can even pay to have your supplements evaluated by an independent lab. What price would you pay to live a longer, healthier, happier life? To me the cost in time and money for what I am doing is trivial compared to the potential benefit, but then to each there own.

Many SCAs are fatal, and have no known cure or even a way to slow progression. I have SCA1 but got rid of my symptoms, and others around the world are having similar results following my example. I simply put my information out there for all to consider, and discus with their medical professional.

Also 1000 IUs of vitamin D3 is equal to 25 mcg. The recommended dose in England for everyone over the age of one is 10 mcg. Harvard Med says that is too low and recommends 1000 IUs or 25 mcg. I do not take vitamin D to help with my ataxia, but as a general health recommendation.

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#7

Thanks for all the info, JP66.

all the best wishes…

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#8

Hi JP66 just a couple of questions ,how much does it cost you forfor the supplements per month? Do you have to hold on to the hand rails when running on the tread mill and what is a poly Q type of ataxia I have sca6 how would I know if that is poly Q cheers
Paul

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#9

:slightly_smiling_face: Welcome back Paul, interesting questions.

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#10

Paul: I have SCA 6 also. Although I had been having symptoms when I was in my 50’s, I was not diagnosed until I was 60. Now I am 67 y/o. May I ask how old are you now? Great that you can still work. …Shoaib

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#11

Hi Paul -

First answer regarding polyQ disorders:

Polyglutamine (polyQ) disorders are a group of inherited neurodegenerative diseases with a fatal outcome that are caused by an abnormal expansion of a coding trinucleotide repeat (CAG), which is then translated in an abnormal protein with an elongated glutamine tract (Q). To date, nine polyQ disorders have been identified and described: dentatorubral-pallidoluysian atrophy (DRPLA); Huntington’s disease (HD); spinal–bulbar muscular atrophy (SBMA); and six spinocerebellar ataxias (SCA 1, 2, 3, 6, 7, and 17).

A quick check looks like this per month:

trehalose- $15
Niagen- $80
taurine - $6
Theracurmin - $45
pterostilbene - $14
Chinese Skullcap - $7
thiamine - $9
Neuro-Mag - $15

Looks like a total of about $180-$200 month. Note: this would include a change in my Niagen cost because I see they stopped making the 125 mg pill and now produce 150 mg pill so instead of taking 750 I will probably move to 600 mg per day.

Lastly, no as of now I am 100% normal at age 53 and can run on the treadmill normally. I have linked other studies though on Health Unlocked that showed treadmill exercise while being supported was helpful to people with ataxia. Plus there is research in Parkinson’s that showed moderate intensity training on a stationary bike improved brain function and health. To me the evidence in favor of any exercise versus no exercise is overwhelming, but IF one can perform at 80% of one’s max heart rate on a treadmill there is evidence to support a great benefit from doing so.

All the best,

Joe

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#12

JP66, I don’t think we’ve met yet. I’m Seenie and I’m one of the lead senior moderators on the Ben’s Friends network.

We’re really glad that you’ve found a regime which you feel is making a huge difference to your quality of life. And thank you for sharing the details here. While our focus at Ben’s Friends is on evidence-based conventional medicine, we do recognize the role of Complementary Therapies in helping improve the quality of life of people with rare diseases. That’s why we devote part of our communities to the sharing of these therapies.

As you rightly suggest, everyone needs to make their own decision about complementary therapies, and everyone should fully inform their medical practitioners about what they are taking. Thank you for that.

That said, I do find that you are starting to tread on the Ben’s Friends Describe, don’t Prescribe ethos. We have several Slide Guides, which you can find under the “How to use this site” tab on the left hand side of the home page, just below the banner. The “Community Guidelines and Etiquette” Slide Guide contains this:

Again, thank you for sharing your experiences so generously and in such great detail. Further discussion will serve little purpose except to sound like you are prescribing.

Seenie from the Moderator Support Team

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closed #13
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