3 years and counting symptom free.

[sunvox]

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 two 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 linked below 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:

healthunlocked.com/ataxia-u...

[KERRINGTON]

Thanks for this extensive post. Really looking forward to reading it. Think I need a whole week . Before I have to go, two things...it was interesting to note your time spent on the treadmill, and reasons. There must be something to it. When I go overboard, like an hour on it, I'm worse off for days. T he second item...thanks for the lovely, happy photo, very uplifting.

[Stanleyclan]

I was only thinking the other day how quiet you had been lately! Thank you for updating your regime for us all. Grateful as ever for your positive posts😁

[Happyfacexx]

Hi Joe, like Stanleyclan I was also wondering how you were, so it’s good to hear from you 😀 it’s great if you can post every now and again because it’s so inspiring for all the new people in the group who can feel it has to be all down hill! Well it doesn’t have to be all down hill as you have proved! I also have a regimen of vit b12, multi bs, a very good multi vit and mineral, vit d, cq10, glutathione ( not every day maybe 4 or 5 days) I also use my treadmill a lot, I meditate, avoid gluten ( have some homemade spelt bread) vegan, lots of raw food and juices and recently started eating loads of sprouted seeds and pulses , I am not symptom free but I’m doing ok.

[densig]

Hello. How long was it before you noticed positive results with Niagen? Thanks for any information!

[ConnieD]

Beautiful family! Just wondering do you take all your supplements with food? Also for a woman how much truniagen should be taken daily? I know you mentioned your Aunt took it, or would it be the same amount regardless of weight and size. Thank you kindly, Connie

[sunvox]

Hi D - When I first started taking Niagen I noticed a slight change in the 1st week, but honestly it's been a very slow and steady continued improvement in overall well being over the last several years that is really telling. I think sticking with a routine for some time is important, and more importantly I think the combination of all the supplements is important.

Hi Connie - Sadly I am sorry to say my aunt passed away from a completely unrelated bout with pneumonia just recently. She had been taking 500 mg a day. I take 750, but there is no scientific reason to suggest 750 is any better than 500. I'm doing so as "insurance". I take half the supplements in the morning with a cup of coffee with a heaping Tbs of trehalose and 2 Tbs of coconut milk creamer and the other half before bed. Other than the morning coffee I do not eat before 3PM most days, not always, but usually. There is some evidence to suggest taking the supplements with food would be better, but the most important aspect for me is that whatever I am doing is working so I plan on sticking with my routine until I have reason to try a change.

[ConnieD]

So sorry about your Aunt! Thank you for the advice, I’m finding between the medications I take and supplements it can be hard on my stomach. So glad to hear you are doing so well!! Please keep updating us it’s inspiring!!😊

[Mkite]

Thank you Joe for all your research and for sharing it with the group. My husband passed from SCA2 one year ago and my 42 year old daughter is now dealing with it. Do you think your regiment would help for SCA2? Keep up the good work!

[sunvox]

Hi M -

First let me say I am sorry for the loss of your husband.

Then let me start with my standard disclaimer, please don't try this without first discussing it with a medical professional,. . .

-

. . BUT, my answer is a hearty "yes".

Everything in my regimen is proven safe in humans at doses much higher than I am taking, and SCA2 is relatively fast progressing so the sooner she tries, the better the possibilities. Buying a quality treadmill and running for 30 minutes 3 times a week is a critical first step. If she can't run then simply walking as fast as she can with the treadmill inclined and holding onto the side rails if necessary might be enough to hit the 80% of max heart rate.

If she does decide to try the complete regimen, please keep us informed on the results whether good or not.

Best wishes to you both.

Joe

P.S. Here is my regimen in a short recap:

1)Exercise: treadmill running at 80% max heart rate 3 times a week for 30 mins and 5 mins cool down walk. Weight training to include squats with weight and leg lifts on a machine to work the quadriceps and hamstrings.

2) a healthy diet with little or no dairy or red meat and high in cruciferous vegetables and salmon

3) only eating between 3 and 7PM

4) stretching or yoga several times per week

5) supplements:

1-2 cups of Green Tea daily

25 g trehalose AM in coffee or Green Tea

1000 mg Niagen (4 pills AM 4 pills PM)

2000 mg taurine by Life Extension (1 pill AM, 1 pill PM)

600 mg Theracurmin HP by Integrative Therapeutics (1 pill AM, 1 pill PM)

100 mg pteropure (1 pill AM, 1 pill PM)

800 mg Chinese Skullcap by Swanson (1 pill AM, 1 pill PM)

1000 mg thiamine HCl/vitamin B1 (1 pill AM, 1 pill PM) - (Solgar brand)

1333 mg magnesium L-threonate ( 1 pill AM,1 pill PM) (Life Extension NeuroMag)

P.P.S I only take 750 mg per day of Niagen now, but initially when I had my first change in symptoms I started with 1000 mg per day. Again that amount is proven safe in multiple human clinical trials:

nature.com/articles/s41467-...

nature.com/articles/ncomms1...

nature.com/articles/s41514-...

[Mkite in reply to sunvox]

Thank you Joe! I will try to see if she will do some of the things.

[Josephlegacy03]

How before you saw improvement in your symptoms?

[sunvox]

I saw improvement in my first month, but I saw slow and continuing improvement over the next several years.

[Josephlegacy03]

Thanks for the info! In your opinion do you think it would be worth trying for improvement with a friend who has sporadic cerebellar ataxia and has been dealing about 3 years. Her doctor has no idea and told her to basically go home and deal cause there is no hope. Wow!

[sunvox in reply to Josephlegacy03]

Without question I would not personally hesitate to try everything in my regimen. A healthy diet and exercise are ALWAYS helpful, and most of the vitamins/supplements on my list have general cellular/brain health benefits especially Niagen and Green Tea.

[Josephlegacy03]

Thank you and will pass this a long to her

[Rhiny99]

Joe,

I have tried trehalose and it doesn’t agree with my stomach. Would xylitol be a good substitute?

[sunvox]

Hi Rhiny -

-

I don't know, but my educated guess is, yes.

-

but

-

SCA is a death sentence. Trehalose gives me diarrhea. I eat 40 grams a day of trehalose. I also eat this:

-

1 cup of Green Tea

40 g trehalose AM in coffee

100 mg Pteropure by Chromadex (1 pill PM)

180 mg bio-available curcumin (Theracurmin HP) (1 pill AM, 1 pill PM)

400 mg Ubiquinol (2 pills AM 2 PM)

900 mg Niagen by Chromadex (3 pills AM 3 pills PM)

1333 mg NeuroMag by Life Extension (magnesium L-threonate) ( 1 pill AM,1 pill PM)

2000 mg taurine by Life Extension (1 pill AM, 1 pill PM)

5 mg lithium orotate (the PURE brand) (1 pill PM)

20 mg BioPQQ (1 pill PM)

400 mg Chinese Skullcap by Swanson (1 pill AM)

2 g thiamine HCl/vitamin B1 by Solgar (4 pills AM)

-

I have no symptoms, when people with my exact condition are using walkers.

-

Joe in NY

[Rhiny99]

Thanks! I will alternate between xylitol and trehalose!