A new light shines on SCA3. Far infrared light therapy?

[sunvox]

Someone pointed me to this awhile back, and I remember being intrigued, but I never followed through on studying it. Today, I caught some conversation on the Parkinson's forum that got me back to this topic and what I found was down right incredible. Researchers in China improved the gait of mice with SCA3 by simply shining light on their brain:

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Far-infrared Radiation Improves Motor Dysfunction and Neuropathology in Spinocerebellar Ataxia Type 3 Mice

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ncbi.nlm.nih.gov/pubmed/297...

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Then I found out there is a company with a clinical trial underway that is studying a similar technology using Near Infrared Light:

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Neuro Gamma RX - Feasibility Trial

clinicaltrials.gov/ct2/show...

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and what's more this area of research is growing fast and full of intriguing work:

ncbi.nlm.nih.gov/pubmed/267...

ncbi.nlm.nih.gov/pubmed/281...

jbc.org/content/280/6/4761....

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I'm not ready to lay down $1700 yet, but maybe after I do some more research . . .

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[KERRINGTON]

There must be a lot of us searching that topic now after seeing the same

recent post re the infrared helmet on the Parkinson's site. I just came off researching it,but have to do more.

[Happyfacexx]

Thank you sunvox, I do look forward to you posts! They always bring us (realistic )hope for our conditions. This infrared treatment is news to me, but after googling it I see it’s huge, and looks very promising . I have just downloaded a sample of a book about the subject ( by Ari whitten) if it’s any good I will purchase the complete book.

[sunvox]

I contacted the manufacturer of VieLight and inquired about whether or not their current product targeted the cerebellum. Here is the reply:

Hello Joe,

We have a new device that points to the cerebellum, and may be able to treat your condition. It is called the Vielight X-Plus, priced at US$749. It is not available at the moment but could be available in a few months. If you are interested to purchase, Edward copied here can put you on the waitlist.

Thank you for writing in.

Lew Lim, PhD, DNM, MBA

vielight.com/wp-content/upl...

Vielight Inc.

346A Jarvis St.

Toronto, Ontario, M4Y 2G6

I put myself on the wait list.

[Happyfacexx in reply to sunvox]

So so interesting and exciting!

[Mermaidia11 in reply to sunvox]

This is brilliant research @sunvox thank you for always being thorough and informing us of developments ! It makes sense to me and seems a lot more helpful than the useless drugs peddled by the immoral pharma and neuros.

I have put my name down too!

I’m struggling a lot these days and am at my wits end.

Losing days with cognitive problems as well as physical ones. The stay positive, be strong and keep moving is no longer working as well for me

So thank you for offering the light of hope!

[Stanleyclan]

I always love a Monday morning 'pick me up' from Joe. Thank you....positive start to the week....the treatments are out there...and getting closer 🤞

[foffee11]

Will it work for sca6

[sunvox]

I was reading up on SCA6 because I believe Happyfacexx has that type of Ataxia and so I was curious. My answer is "I think so", but the truth is there are parts of the pathology of SCA6 that I do not completely understand. Potentially, it sounds to me like SCA6 could be a spectacular candidate for this treatment. From what I can tell SCA6 is particular amongst SCA's in that it involves an electrical disfunction in a particular part of the intracellular pathways. This type of treatment actually works through electromagnetic radiation transmitting energy. Honestly though I will admit it is above my "pay grade" to answer that question. I love a good challenge so I plan on trying to learn more about the "channel" issues of SCA6 and then try to understand how this treatment would potentially interact. Unfortunately, I'm not sure there are more than a handful of people worldwide that might be able to answer that question with authority.

[foffee11 in reply to sunvox]

Thanks so much

[Happyfacexx in reply to sunvox]

Thank you so so much Joe ,

are you a member of spinocerebeller ataxia awareness and research support group? A person with SCA3 has just posted that she is having great success with healing doing intermittent fasting, she fasts for 16 hours a day and eats only within eight hours a day

[Stanleyclan in reply to Happyfacexx]

Now that's interesting. Much to my frustration my husband refuses to take any food to work and so regularly eats nothing until dinner. His symptoms, so far, are much milder than his siblings......maybe i won't nag him so much about this!

[sunvox in reply to Stanleyclan]

I'll add to that anecdote . . . although people everywhere say it's better to eat lots of small meals, I normally only eat dinner. I never eat breakfast and rarely have lunch although I have one cup of coffee with a heaping Tbs of trehalose every morning so it's not true fasting. Interesting.

[Litty]

Wow that sounds good - you are always so through with your research - never heard of it - expensive though x

[Trinity48]

How exciting ! Anything --just anything to slow down the progression of this horrible SCA6--I'm getting so frustrated,just would love to be able to move about more easily and do things that I used to do.Thanks Sunvox you've given me some hope.

[Litty]

OK lol been thinking about lights and doing it cheaper - what are your thoughts please on therapy lamps? x

[Libra7]

Joe, I’m sure I speak for all SCA6 sufferers when I say thank you so much for giving us a little hope. Please keep us updated about your progress in investigating the condition and in particular about any device that may alleviate the symptoms. I have long thought that a physical device that could work with the cerrabellum would be preferable to medication. I remember a few months ago on TV they featured a lady who had such a disabling tremor in her hand (Parkinson’s?) that she couldn’t write at all. She was fitted with a device (electrical?) which completely restored her ability to write. Please continue your good work.

[sunvox]

I want to emphasize 3 points. First, as with anything else you find on this forum, it is always best to talk to a healthcare professional and get their opinion before buying or trying anything new. Second, IF and it's a big IF, but if this device works it will, at best, only slow progression. There really is nothing to indicate it could reverse symptoms. Third and final, I believe strongly that this would best be used along with other tiny bits of alternative therapy that includes diet, exercise, and supplements so that the net result is more powerful than the use of the device alone.

[Mermaidia11 in reply to sunvox]

Hi @sunvoxx

I just wanted to check in with you and ask whether you ever got your light therapy device after you put your name down on the waiting list

On the strength of your post and research, I put my name down and have recently been advised that one has become available.

However, 749 is a heavy outlay, so I am dithering about buying it.

I was so pleased to find this post, enabling me to message you.

So would you be kind enough to let me know your latest thoughts and whether you have heard back from them and what you ultimately decided to do?

A small part of me thinks I should just go for it for research purposes for all of us, but then I think of the money and how devastated I would be if I showed no improvement? I have CA and MS and life is getting harder and harder, despite all the things I have done to adapt ...Your wise and judicious advices would be appreciated

Thank u

[Namitaytrev]

Hi Joe

Have you purchased/tried the Vielight Plus? I read you asked to be added to the waitlist when it became available.

Nami

[sunvox]

Hi Nami -

I have not tried it yet. I was on the list and offered one, but I walk a fine line at home not wanting my children to learn about my affliction too soon. I want them all to finish college and get started in life before potentially worrying about whether or not they inherited SCA1, and I thought it would be too hard to explain why I was putting such an odd device on my head every night. Also, I have become increasingly comfortable in my belief that what I am doing now will slow my progression enough on it's own to make my life "normal".

All the best,

Joe