JP's updated routine. Hope for genetically diagnosed but asymptomatic SCA patients.

[sunvox]

I am sharing information, but as always no one should ever start taking something based on the comments of a stranger on the internet and you should always talk to your doctor before trying anything new!!

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Last year when I joined Health Unlocked I had just discovered trehalose and wanted to share my information. Now almost a year later I'd like to provide a type of summary to all that I have learned over the last many months. I also want to add a couple tiny updates. First, my father, the news is tragic, but informative. He suffers from Alzheimers as well as SCA1 so he reached a point where he could no longer stay independent and we, the family, made the choice to move him to a nursing home. Now over the last year his speech had held steady and he continued to take a few steps with a walker and use the bathroom unassisted. Essentially his SCA did not progress for 11 months. The nursing home he went to will not allow him to take trehalose and niagen and pterostilbene because they are not medicaid approved medicines. Within one month of stopping those supplements he started falling when he would try to go to the bathroom and his speech is now almost unintelligible. Were the supplements working? I have no scientific proof, but I and my family believe so. My aunt continues to take them and her symptoms have also held steady and she is still using a walker.

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Anyways, that's the update now here's my synopsis of what I learned this year.

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Using a multi-pronged approach to neurological disorders:

ncbi.nlm.nih.gov/pmc/articl...

youtube.com/watch?time_cont...

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Real world examples of people delaying Parkinson's:

vimeo.com/191664871

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Diet and neurological health:

youtube.com/watch?time_cont...

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Exercise:

jamanetwork.com/journals/ja...

journals.plos.org/plosone/a...

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Trehalose (enhanced autophagy of misfolded proteins):

pharmacychoice.com/News/art...

academic.oup.com/hmg/articl...

link.springer.com/article/1...

link.springer.com/article/1...

jbc.org/content/285/43/3325...

sciencedirect.com/science/a...

link.springer.com/article/1...

scienceofparkinsons.com/201...

sciencedirect.com/science/a...

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one clinical trial of oral trehalose:

ncbi.nlm.nih.gov/pmc/articl...

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An older study that shows that sugar molecules nearly identical to trehalose pass thru the stomach wall undigested at a rate of 0.5 to 2%:

researchgate.net/publicatio...

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Niagen (cellular repair):

nature.com/articles/s41514-...

researchgate.net/publicatio...

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pmc/articl...

cell.com/cell-metabolism/fu...

cell.com/cell-metabolism/fu...

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

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Pterostilbene (NrF2 activation):

scienceofparkinsons.com/201...

sciencedirect.com/science/a...

sciencedirect.com/science/a...

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Thiamine (improved cellular energy usage):

healthunlocked.com/ataxia-u...

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PQQ (increased mitochondrial health)

healthunlocked.com/ataxia-u...

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vitamin D (neurological protection and general health):

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/265...

health.harvard.edu/blog/vit...

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I want to emphasize that I had symptoms including: inability to stand on one foot, difficulty walking downstairs, difficulty with clear speech, diminishing handwriting, fatigue, and inability to use exercise to increase strength or endurance. All my symptoms are now gone and I am gaining strength and endurance again. Here is what I am doing:

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EDIT: I will update this list whenever I make a change and post change date:

latest change: 2/5/2018 - increased pterostilbene by 50 mg, added 300 mg benfotiamine, 20 mg PQQ, and B complex vitamin by Natures Way. Why: In theory thiamine helps cells utilize energy and increases cellular survival. The human trial of PQQ hinted at increased mitochondrial health which was shown in animal research. Pterostilbene at 125 mg a day lowered blood pressure, and thiamine seemed to increase mine so I thought I'd increase it and see.

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1) treadmill running 4-5 times a week for 30 minutes at 80% max heart rate followed by 10 minutes cool down

2) a diet mostly vegetarian with little or no dairy, processed food, sugar or meat and rich in cruciferous vegetables

3) supplements: 40g trehalose in 2 cups of coffee, 3 squirts of trehalose infused water per day in my nose, 500 mg of niagen twice daily, 100 mg of pterostilbene once daily, 2 cups of green tea daily, 2000 IUs of vitamin D, 300 mg daily of benfotiamine, 20 mg daily of PQQ, a vitamin B-complex vitamin from Natures Way.

4) yoga 3 times a week

5) meditation weekly

I would also note that I am currently researching and will likely add a thiamine supplement benfotiamine:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pubmed/275...

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Joe in NY

[ddmagee1]

Excellent research!

[sunvox in reply to ddmagee1]

Thank you dd!

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I read some of your posts, and I sympathize with the enormous difficulty required to exercise hard once symptoms arise. I have 2 thoughts. First, although I only link to one study on exercise and PD, there is actually an enormous amount of research that is related, all of which shows that cardio exercise has many benefits and likely extends life regardless of one's ailment. Second, ever since the PD exercise study came out I have been wondering if it was the heart rate that was important and not the act of running. If that were true, then I would think using a stationary bike for 30 minutes a day and getting ones heart rate up to 80% might be just as effective. I hope someday soon researchers will explore this as an option because for sure there are many patients in a situation similar to yours where running 4 or 5 times a week is just not possible.

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No matter what, don't give up the fight, and thanks for sharing your knowledge and thoughts!

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Joe

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P.S. I'm not sure if it is possible to get your GP to give you a prescription for this nor whether or not there are physical therapists in your area aware of this type of exercise therapy, but in any case here is a very interesting study in which people were able to regain a year or more worth of lost ability thru physical therapy designed around ataxic problems:

Motor Training in Degenerative Spinocerebellar

Disease: Ataxia-Specific Improvements by Intensive

Physiotherapy and Exergames

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pdfs.semanticscholar.org/a0...

[ddmagee1 in reply to sunvox]

Thanks Joe. Getting the heart rate up for a sustained period of time, is good exercise methodology, of course. I have had my heart checked out- ultra sound and stress test- so I can do the type of exercise needed to raise my heart rate. Every day of the week, keeping the heart strong, by doing a safe amount of physical exercise to raise the heart rate, has been proven, in many test studies, to be beneficial to longevity. Off hand, I can’t think of a specific study, but I know studies at the Cleveland Clinic, and other academic and health care institutions have been done to prove that fact. As you’ve said, and as I’ve done, one should always get their doctor’s approval before they undertake any exercise program. People with Ataxia and PD,and other chronic ailments, must discuss with their doctor’s any plans for exercise, so that a plan can be formulated to suit their particular needs and abilities, because it’s important that exercises benefit their health, rather than cause them more problems. Many exercises I do have been modified to fit my specific abilities to perform them safely and beneficially.

[sunvox in reply to ddmagee1]

Hi dd -

Just want to be 100% sure. It seems to me as if you are implying you do not believe that intense exercise 5 times a week can stop the progression of your disease. Is that correct, and if so did you did read these 2 studies?

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jamanetwork.com/journals/ja...

journals.plos.org/plosone/a...

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Aside from those studies watch Dr Mischley in this video from 18:15 to 19:50. She makes the point that people who exercised 7 days a week had no progression for 10 years.

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vimeo.com/191664871

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To me, as a person with ataxia, I can't imagine not trying everything that shows potential.

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Just trying to be helpful

Joe

[ddmagee1 in reply to sunvox]

You are correct Joe. I had not gone into detail about my Ataxia. My Cerebellar Ataxia is caused by a blood vessel defect, not by a disease. An artery is pressing in on my cerebellum at the cranial nerve root entrances, and has attached itself. It is inoperable. It causes Ataxia symptoms, with gait and balance. Additionally, I have been diagnosed with Parkinson’s disease. which I take medicine for. I do believe that vigorous exercise helps in slowing progression of Parkinson’s; however, it does not stop the process of neuro-degeneration. You are being very helpful. I just, usually, don’t go into detail about my double problem of Ataxia and PD.

[Libra7]

Hi sunvox Thank you for sharing all your research. It will take me a while to look into ot all. Where do you buy the supplements?

[sunvox in reply to Libra7]

Hi Libra,

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I am very happy you are interested in my post, but before posting links to the supplements I simply need to remind you of the obvious which is: One should ALWAYS discuss ANYTHING they want to try with their GP first

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I purchase trehalose on Amazon, and Niagen and Pterostilbene directly from Chromadex. Assuming you live in the U.K. there is a better source for trehalose:

trehalose.co.uk/

and Niagen is tricky as there are many "imitations". Niagen is NOT nicotinamide or niacin. Niagen is nicotinamide RIBOSIDE, and there is a big difference:

amazon.co.uk/Niagen-Nicotin...

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and pterostilbene:

amazon.co.uk/Life-Extension...

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and benfotiamine:

amazon.co.uk/Swanson-Maximu...

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Again, I am not a doctor, and I am NOT suggesting people try what I am trying. I AM suggesting you read the research then take that knowledge and talk to your doctor.

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Best wishes!

Joe

[Libra7 in reply to sunvox]

I assume you discussed everthing with your own GP? Most I think would want tpoo distance themselves from anything alternative. Are there any contra indications? Or is it a case of 'as long as it doesnt do any harm'.'...

[sunvox in reply to Libra7]

Because I am doing some crazy stuff like spraying trehalose liquid in my nose, I wanted to have a doctor watching me. Fortunately the physicians I am dealing with are all impressed with my knowledge and so are willing to help in any way they can. In fact some physicians at Harvard who specialize in SCA1 and Parkinsons are discussing with their patients what I am doing.

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Without question finding a doctor that is open to new ideas and "alternatives" is hard, but based on my experience if you go in armed with real knowledge, doctors become much more accepting of trying something new.

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As to contra-indications, there have been none for me so far, but I have discussed with researchers and doctors this very topic, and anyone trying new ideas like this must be keenly aware that there is simply no information on the longterm risks especially when one realizes that this is not a take it once solution but requires a lifetime commitment to the whole routine.

Joe

[Litty]

So lovely as always to hear from - always so positive!!

Sorry about your Dad - my sister has gone into a home with SCA1 and dementia too.

As you know though they have not worked for me - probably a silly question but what do take if you only could get one?

x

[sunvox in reply to Litty]

Hi Lit!

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I think the science behind vitamin B is HUGE, and you know Niagen is my favorite form of vitamin B. Over this past year I have gone from 1000 mg a day to 500 mg a day to 250 and now back to 1000 mg a day. Initially I found 1000 mg was giving me a sleepy point midday so I backed off, but when I backed off I found my legs would feel really stiff like I had worked out super hard the day prior even on days when I didn't work out at all. When I went back to 1000 mg (500 mg morning and night) the stiffness went away the very next day and my strength has begun rebuilding both in endurance and strength in general. There is a tiny bit of evidence as one company (Elysium) published a study in older humans and they reported a difference in physical strength among people taking 250 versus 500. The complicating factor in their study is that it was on their product Basis which has both niagen AND pterostilbene.

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Anyways, that's a really long answer to say vitamin B. I also would like to add that the thing about this is, patients with ataxia would not likely feel ANY improvement from trehalose or niagen if they already had symptoms because these supplements can't repair damage already done. THE key is it MAY simply be slowing progression. At least that's what appeared to be happening in my dad's situation.

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Here is the study in mice that I think is most convincing of the importance of vitamin B3. The study used NAM which is the version of vitamin B that has some side effects in humans like flushing. NR (niagen) acts the same on a molecular level but so far has not shown to have the same side effects plus NR is a SIRT1 activator which has been shown in mouse research to be important in stopping neurodegeneration. I also spoke directly with one of the researchers involved in the study and she agreed NR would very likely be a better answer for humans. For the record here is what she wrote:

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"These findings are exciting because for the first time, NAM treatment has been shown to be effective in improving motor deficits in a model of HD, at doses that are within a human clinical range. Our data therefore suggest that NAM is a potential therapeutic for HD symptoms, and should be strongly considered for clinical trials."

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sciencedirect.com/science/a...

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and here is the latest study of niagen in humans:

nature.com/articles/s41514-...

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they said:

"the finding that NRPT 2X group demonstrated significant increase in both the 30-second chair stand and the 6-min walk test at 60 days suggests that prolonged supplementation with NRPT may support overall muscle health and/or energy in an older population"

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and here is a study that showed people who had elevated vitamin B6 in their diet had later onset of Parkinson's:

ncbi.nlm.nih.gov/pmc/articl...

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Lastly I would say again that I am making a trehalose solution and spraying it in my nose. Nicotine when inhaled hits the brain cells in under 5 seconds. The nasal passage is perhaps the bodies shortest link to the brain, but something like that is over the top and MUST be talked about with a physician.

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Can you ride a stationary bike?

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Joe

P.S. There were some negative issues that arose in the NRPT (Basis) study, but they were related to lipids and blood pressure which another study has shown to happen at higher doses of pure PT or pure pterostilbene. That is why I take niagen separately from PT and only take 50 mg daily of PT. My blood pressure and lipids remain unchanged.

[Litty in reply to sunvox]

Thank you for that - lots to read and think on.

I do 20 mins as fast as I can on my bike every day.

Practise my speech as often as I can. Weekly dance (try). 3 times week fitness trainer, 8 weeks near-physio and Shiatsu 2 weekly (just started)

x

[Jackieb301]

Hi, thank you for all your research and taking the time to share it. I for one, truly appreciate it. Just one quick question, you mention your are now symptom free. How bad were your symptoms originally? How does that fit in with another statement you wrote mentioning that once the damage is done, it’s done. I am still working and fairly high functioning but some Of my limitations seem to rear their ugly head more frequently. I read so much maybe I didn’t interpret it properly or even misread it. Can’t locate it right now. Thank you 😊

[sunvox]

Hi Jackie - Thank you!

My symptoms included: inability to stand on one leg, trouble going down stairs (I felt a need to hold onto a railing), changes in my speech (I found it difficult to truly alliterate), messier hand writing, and fatigue. None of these was measured scientifically and it is all anecdotal, but I will say that my father who was seeing a physical therapist for over a year went from zero ability to take steps with a walker to completing a test called T.U.G. (Timed Up and Go) which was basically walking a few meters with a walker and being timed. Although I said damage can not be repaired there is certainly evidence that a partial roll back is possible even if all one does is therapy. In the study linked below some patients were able to regain the equivalence of one year worth of decline just from therapy.

pdfs.semanticscholar.org/a0...

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If you are like me and just beginning to see symptoms, it is my genuine belief that combining daily treadmill work at 80% max heart rate, plus diet, plus supplements, plus stretching will hold your symptoms at bay perhaps indefinitely. I can tell you though it is not easy. In my mind I see this as a "Life or Death" question which perhaps is overly dramatic, but thats what enables me to remain motivated and work hard at keeping it up. Although the evidence is limited so far, it does appear that the single most important element is exercise and there is a direct correlation between how much you do and how much benefit you see so exercising each and every day gives you the maximum chance of benefits. Now interesting enough I have found for myself that 80% of max heart rate is not too difficult it equates to an incline of 7% and a speed of 3.5 mph on my home treadmill. Honestly that is not too hard since I have been running since I was 14. So I actually do 30 mins at 6 mph and then 15 mins at 7% and 3.5 mph.

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Best wishes and be sure to keep us updated on anything you try or experience or learn!!

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Joe

[sunvox]

updated supps 2/5/2019