What supplements can I try?

[Kaap]

Hi, just been diagnosed with SCA 2. Not really news as my mother has it. What I am wondering is if there are any supplements (eg vits, anti oxidant etc), you can take which may help with the symptoms? The medical profession are very reticent here to give advice - simply stating there has been no clinical trials. Any info gratefully recived7

[PeteW]

Try

Coq10

Vit b,c,d,e

NAC

ALA

ALC

Essential amino acids

Krill

For starters

[sunvox in reply to PeteW]

Really? And why would these be appropriate?

Kaap -

Welcome to HU. First you need to learn how to use this site. People have been asking the same questions you have for years and all you need to do is type search words above and you will find a wealth of information. Next - there are no shortcuts. The only way you will find out the truth is by spending a great deal of time reading. If you don't have the time to read and understand the issues being discussed then you REALLY REALLY should consider sticking to the advice of your doctor. Lastly and most importantly you should NEVER try something based on the random comments of someone on the internet.

Now having said all that allow me a brief introduction. My name is Joe Peck. I have been posting on HU for almost 2 years now. I have SCA1 which is very similar to what you have. 2 years ago I had symptoms including trouble with balance, slurred speech, poor hand writing, fatigue, and inability to exercise and gain strength. Today I have ZERO symptoms.

I believe the reason I have no symptoms is because I am following the idea of Dr. Bredesen. He treats patients with Alzheimer's disease and has had over 100 patients who have now reversed their symptoms. The root of his treatment lies in using many, many different "therapies" hence they call the system of treatment Integrative Therapy.

I eat a healthy diet that has little or no processed foods, red meat, dairy, and sugar, but is rich in cruciferous vegetables and salmon and lean meats. I exercise a particular way and amount, and I take the following supplements: trehalose, Niagen, pterostilbene, taurine, Theracurmin, baicalein, thiamine, Neuro-mag, and vitamin D.

Everything I do has extensive scientific research showing potential benefit. The vast majority of the research is in animals and petri dishes, but that is the best we have as SCA patients. You can click on my face or screen name and you will get a link to all my posts, but more importantly I hope you will click on the link below and carefully read my primary research post that I update on a regular basis:

healthunlocked.com/ataxia-u...

No matter what I wish you all the best and hope you find something to help your situation.

Joe in NY

P.S. If you want to "humanize" the person behind the post you can go to Facebook and look for Joseph Peck (Csizmadia) and that is me.

[PeteW in reply to sunvox]

Your own advice applies here full stop if you want to see why there might be appropriate I suggest you research yourself and don't take the advice of the stranger

Jaap - this is good advice I suggest you do the samebut please also do not be manipulated by self-righteous people

[sunvox in reply to PeteW]

So we're talking about helping a sick person and you come on here with an unsubstantiated list and say "go research it", and I post a thoughtful response backed up by hundreds of hours of research with a desire to help and I am self righteous?

self-right·eous

[ˌself ˈrīCHəs]

ADJECTIVE

having or characterized by a certainty, especially an unfounded one, that one is totally correct or morally superior.

Pete, I have no idea how old you are or your background other than the dozen or so posts you've made here, but sir you need to take a moment to evaluate yourself before you denigrate others.

[PeteW in reply to sunvox]

May I remind you It was your advice to not take strangers advice on the net then you start pontificating and spewing your own 'illustrious' advice.

Self-righteous generally means a pompous ass!

Stick your semantics where the sun don’t shine kid

[KIrvine2017 in reply to sunvox]

Joe, well said. Thank you very much for all your informative posts. I read them religiously, although I come at this from a different angle. My daughter has ataxia as a result of a virus/infection that caused cerebellitis when she was 6. MRI scans of her brain show some permanent damage was caused. She has no treatment in the form of medication or supplementation. I don’t understand the difference between the genetic ataxias and ataxia caused by brain injury sufficiently yet to understand whether giving my daughter supplements may help her at all. Do you have any view on this? Thanks again for all that you do for the community.

[sunvox in reply to KIrvine2017]

Hi K -

Sadly my alternative therapy regimen is based on the idea of slowing down the rate of damage that is occurring in the brains of people with progressive ataxias. In your daughters case the damage has already been done and reversing damage is a whole other ball of wax. On the flip side I am a huge believer in neuroplasticity meaning I would certainly have great hope that someone out there can help your daughter maximize her potential by retraining parts of the brain over a long period of time. The only thing I would say about supplements would be that even though the damage has occurred one would certainly want the remaining neurons to act as efficiently as possible so a healthy diet, exercise, and keeping essential nutrients like NAD+, thiamine, and magnesium at optimum levels certainly wouldn't hurt. What optimum is for a child is the million dollar question. I would hope you could find a doctor that is willing to discuss ALL the avenues including alternative therapies as your best option. I wish I could be of more help.

-Joe

[KIrvine2017 in reply to sunvox]

Thank you Joe, I appreciate your reply and I thought this would be the case. She is still improving gradually so we remain hopeful. Many thanks for your reply.

[majajefferies in reply to KIrvine2017]

Hi,

I found this really interesting, this might be an avenue to explore;

www3.nhk.or.jp/nhkworld/en/...

Good luck,

Maja

[Jujubeelu in reply to sunvox]

How do you run if you cannot run? Would an elliptical be enough?

[sunvox in reply to Jujubeelu]

Hi Juju - I think any exercise is better than no exercise, but I would point to one study of people with ataxia that may be of interest. In that study the patients were supported by some type of device while using a treadmill. The end result was the patients saw improvements in their gait even though they were exercising using a support. Perhaps then finding a way to use assistance is possible whether that be simply holding the rails on a treadmill or investing in some type of safety harness for home use. Otherwise I think cycling on a stationary bike would be an option, but again doing so for 30 minutes and exerting oneself enough to get your heart rate up to 80% of max. None of this should be done without first consulting your doctor.

All the best,

Joe

P.S. Here is a link to my post on the treadmill study for treatment of SCA:

healthunlocked.com/ataxia-u....

[Kaap in reply to sunvox]

Thanks Joseph, good to make your acquaintance! I’ll check out Facebook

[Kpgds in reply to sunvox]

I wholeheartedly believe in exercise and intermittent fasting. If you don’t enjoy reading as much, look up Dr. Bredesen and Dr. Rhonda Patrick. Rhonda hosts a podcast and features Dr. Bredesen multiple times to discuss autophagy and fasting. Keeping your body strong is extremely important. 30 min cardio @ 80% is no joke, but man you feel good afterwards.

[ilhana in reply to sunvox]

Btw I can’t run

[benning]

I believe in taking lavender,fish oil,maintaing a good diet and plenty of exercise.Oh Yea and don't forget to do breathing exercises.

[ilhana]

I can’t open the primary research link

How Long did it take you and what exercises did you do?