95 replies to this topic

[Logic]

I haven't looked into this at all (unlike when I was very active here) but maybe its worth a look:
https://scitechdaily...ative-diseases/

[2Sunny]

Time for an update.

 

As of April 14th 2025 I am cancer free, and am back taking supplements to combat my ataxia which got much worse during my cancer treatments.  Happily since restarting exercise and supplements my ataxia symptoms have greatly improved noticeably my vision and my balance.

 

Here now is the list of supplements I have settled on so far:

 

trehalose

Niagen

pterostilbene

theracurmin

vitamin D&C

vitamin B1

NeuroMag

taurine

creatine

 

I will update the amounts tomorrow

[ambivalent]

Time for an update.

 

As of April 14th 2025 I am cancer free, and am back taking supplements to combat my ataxia which got much worse during my cancer treatments.  Happily since restarting exercise and supplements my ataxia symptoms have greatly improved noticeably my vision and my balance.

 

 

Hello Joe, 

 

I am delighted to read such positive news. I wish you a continued recovery. Also, of course, this challenging period in your life has, through the successful recommencement of your ataxia protocol, provided further validation of this intervention. 

 

Please keep us up to date of changes in protocol, and your well-being, including protocol dosing levels. 

[ambivalent]

Hello Joe,

 

How are you? I hope things are going well.

 

On HD: The FDA blocked Uniqure

 

A further post on reddit for metabolic therapies as potential interventions for HD. 

 

 

[2Sunny]

Still kickin' and still cancer free!

 

Interesting observation.

 

I cut back on my supplements for quite some time and at the end of my cancer treatment my balance was so bad I had to hold my wife's shoulders as I walked downhill in the woods while doing the daily dog walk.  Now I can walk 100% on my own although I still feel off balance when going downhill.  In addition I stopped exercising for quite sometime as well, but when I resumed my full regimen of supplements including 900 mg daily of Niagen my balance improved dramatically.  My personal belief is that the supplements alone are making an enormous difference in slowing the progression of my ataxia.  Anecdotal and n=1 for sure, but I'm not going to argue with the real world results

 

Thanks for checking in. 

 

I will go now and review my current list of supplements and put them below.

[ambivalent]

That is excellent news on all fronts, Joe/ I look forward to your supplement-list update. The symptom imrprovement experienced after re-starting the protocol is certainly a strong validation. Has no one else with SCA1 adopted your approach?