My SCA1 progression has stopped. My alternative... - Ataxia UK

Ataxia UK
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My SCA1 progression has stopped. My alternative therapy for SCA1.

My name is Joe Peck. I am 53 years old and in 2013 I tested positive for the SCA1 genetic mutation. I am neither a doctor nor a researcher, but I do have a strong background in science and graduated with honors from Dartmouth College. Over the last several years I have read hundreds of research papers some of which are linked below. Also, starting in 2016 I noticed early symptoms, but now I am symptom free and feel better than I have in a decade and here is what I am doing that I believe is making a difference.

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First, this isn't about any one aspect. I believe it's the combination of ALL the elements listed below that are allowing me to keep my symptoms at bay. The concept of using a multi-pronged approach to treating neurological disorders was studied in 2014 by Dr. Dale Bredesen and his work is the key to what I am trying to do. In his study 10 patients with Alzheimer’s used numerous alternative therapies TOGETHER and amazingly they got better something individual therapies never before accomplished. ( ncbi.nlm.nih.gov/pmc/articl... ) Second, although I just said it's not about any single element, I do believe the most important piece of this regimen is my running on a treadmill 30 minutes 3 times a week at 80% max heart rate. I use this exact type, amount and level of exercise because there is scientific evidence that it and ONLY it stops progression of a neurological disorder. That means not 70% heart rate, not 20 minutes, not cycling and not boxing, but 30 minutes on a treadmill at 80% max heart rate. ( webmd.com/parkinsons-diseas... ) In addition there is scientific evidence that the reason exercise is effective is because it reduces toxic protein buildup in the brain.

( sciencedaily.com/releases/2... )

( europepmc.org/articles/PMC3... )

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Aside from the concept of a multi-pronged approach the second key to understanding what I am trying to do is to understand that SCA1 is like many other neurological disorders in that at the heart of the disease is a protein that misbehaves and hangs around too long so anything that keeps the protein from misbehaving (forming an oligomer) and cleans out the protein (increases autophagy) might be helpful. It is true that if any of the supplements on my list are actually getting to the brain it is in teeny tiny quantities, but my hope and belief is that since the disease takes 40 or 50 years to appear then maybe tiny quantities are enough to change the course of the disease. Regardless of whether or not the supplements I take actually are reaching my brain, it is my belief (based on the science in animals and cell cultures) that some of the items on the list work on the bad protein issue while others work to enhance general cellular survival and efficiency and still others work to provide extra energy to cells. Importantly each element plays a slightly different and tiny role but TOGETHER I believe they can make a difference.

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In 2016, 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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1) EXERCISE: Treadmill running 3 times a week for 30 minutes at 80% or more max heart followed by a 5 minute cool down walk (5.7 mph at 0% incline first and then 3.7 mph and 7% incline) plus additional weight training particularly leg lifts for my quadriceps and kettle ball dead lifts. Daily 20 minute dog walk. Twice weekly upper body weight training.

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2) DIET: - Little or no processed food, dairy, red meat or animal fat. Lots of cruciferous vegetables, boneless skinless chicken, salmon and other fish. Low carbs.

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3) INTERMITTENT FASTING: eating only between 3 and 7PM

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4) YOGA, STRETCHING, and MEDITATION

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5) SUPPLEMENTS: (amounts are daily total)

2 drops twice daily Thealoz eye drops

daily squirt of Xlear

1-2 cups of Green Tea

30 g trehalose AM in coffee

100 mg Pteropure by Chromadex (1 pill AM, 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 (3 pills AM, 1 pill PM)

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not taken for ataxia, but treatment of apthous stomatitis and general health:

1000 mcg B-12 (methylcobalamin) (1 pill AM, 1 pill PM) (contains mannitol)

1000 IU vitamin D (1 pill AM)

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And, here is the science behind why I have chosen to do what I am doing:

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Why a combination of therapies?

Using a multi-pronged approach to neurological disorders:

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

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Why a diet rich in cruciferous vegetables?

scienceofparkinsons.com/201...

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Why daily/intermittent fasting?

ncbi.nlm.nih.gov/pubmed/295...

ncbi.nlm.nih.gov/pubmed/285...

ncbi.nlm.nih.gov/pubmed/291...

ncbi.nlm.nih.gov/pubmed/278...

ncbi.nlm.nih.gov/pubmed/293...

ncbi.nlm.nih.gov/pubmed/264...

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Why treadmill running? Neuroplasticity and autophagy.

jamanetwork.com/journals/ja...

europepmc.org/articles/PMC3...

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

exercisepd.com/uploads/3/5/...

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

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

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

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Why lithium (autophagy enhancement, cellular health, GSK3 inhibitor)

healthunlocked.com/ataxia-u...

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

ncbi.nlm.nih.gov/pubmed/278...

ncbi.nlm.nih.gov/pubmed/238...

lifeextension.com/Magazine/...

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Why trehalose or mannitol? Autophagy, anti-oligomerization.

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

pharmacychoice.com/News/art...

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

nebula.wsimg.com/2d91f65f64...

scienceofparkinsons.com/201...

scienceofparkinsons.com/201...

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

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

sciencedirect.com/science/a...

jbc.org/content/288/24/1757...

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

sciencedirect.com/science/a...

sciencedirect.com/science/a...

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one clinical trial of oral trehalose for vascular health:

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

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An older study that shows that mannitol passes thru the stomach wall undigested at a rate of 0.5 to 2%:

researchgate.net/publicatio...

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Why Niagen and NOT other B3s? Cellular process enhancement, Sirtuin activation.

clinicaltrials.gov/ct2/show...

hvmn.com/biohacker-guide/me...

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

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

cell.com/cell-reports/fullt...

scienceofparkinsons.com/?s=...

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

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

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

sciencedirect.com/science/a...

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

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

nature.com/articles/s41514-...

researchgate.net/publicatio...

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Why Ubiquinol (mitochondrial health)

healthunlocked.com/ataxia-u...

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Why Green Tea? Autophagy, anti-oligomerization, anti-oxidation.

ncbi.nlm.nih.gov/pubmed/286...

ncbi.nlm.nih.gov/pubmed/250...

ncbi.nlm.nih.gov/pubmed/168...

ncbi.nlm.nih.gov/pubmed/292...

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

scienceofparkinsons.com/?s=...

scienceofparkinsons.com/?s=...

mdpi.com/1420-3049/23/6/129...

michaeljfox.org/foundation/...

ncbi.nlm.nih.gov/pubmed/293...

ncbi.nlm.nih.gov/pubmed/288...

ncbi.nlm.nih.gov/pubmed/286...

ncbi.nlm.nih.gov/pubmed/282...

ncbi.nlm.nih.gov/pubmed/273...

ncbi.nlm.nih.gov/pubmed/272...

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

ncbi.nlm.nih.gov/pubmed/268...

fegt.org/en/clinical-studie...

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Why pterostilbene? Sirtuin activation and anti-oxidatiion.

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pubmed/271...

ncbi.nlm.nih.gov/pubmed/293...

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

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pubmed/291...

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

sciencedirect.com/science/a...

nature.com/articles/nm.2558...

pterostilbene.com/

scienceofparkinsons.com/201...

nature.com/articles/s41598-...

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pubmed/293...

ncbi.nlm.nih.gov/pubmed/292...

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

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Why Theracurmin? Autophagy, anti-oligomerization, anti-oxidation.

sciencedirect.com/science/a...

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

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

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

ncbi.nlm.nih.gov/pubmed/240...

ncbi.nlm.nih.gov/pubmed/282...

michaeljfox.org/foundation/...

tandfonline.com/doi/abs/10....

ncbi.nlm.nih.gov/pubmed/290...

ncbi.nlm.nih.gov/pubmed/284...

ncbi.nlm.nih.gov/pubmed/288...

ncbi.nlm.nih.gov/pubmed/273...

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Why Chinese Skullcap? Autophagy, anti-oligomerization, anti-oxidation.

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

ncbi.nlm.nih.gov/pubmed/295...

ncbi.nlm.nih.gov/pubmed/244...

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

ncbi.nlm.nih.gov/pubmed/?te...

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

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

sciencedirect.com/science/a...

scienceofparkinsons.com/201...

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Why PQQ? Mitochondrial health and memory.

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

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

sciencedirect.com/science/a...

functionalfoodscenter.net/f...

sciencedirect.com/science/a...

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Why thiamine? Anti-oxidant, cellular energy.

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

sciencedirect.com/science/a...

sciencedirect.com/science/a...

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

ncbi.nlm.nih.gov/pubmed/274...

fafysio.wordpress.com/2016/...

healthunlocked.com/ataxia-u...

sciencedirect.com/science/a...

ncbi.nlm.nih.gov/pubmed/287...

sciencedirect.com/science/a...

advances.umed.wroc.pl/pdf/2...

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

clinicaltrials.gov/ct2/show...

ncbi.nlm.nih.gov/pubmed/278...

ncbi.nlm.nih.gov/pubmed/285...

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Why taurine? Anti-oxidation and muscular health.

ncbi.nlm.nih.gov/pubmed/112...

ncbi.nlm.nih.gov/pubmed/240...

ncbi.nlm.nih.gov/pubmed/163...

ncbi.nlm.nih.gov/pubmed/229...

ncbi.nlm.nih.gov/pubmed/295...

ncbi.nlm.nih.gov/pubmed/260...

ncbi.nlm.nih.gov/pubmed/192...

ncbi.nlm.nih.gov/pubmed/289...

lifeextension.com/Magazine/...

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Why nano-magnesium (Magtein) ? Cellular process enhancement.

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

ncbi.nlm.nih.gov/pubmed/274...

ncbi.nlm.nih.gov/pubmed/263...

ncbi.nlm.nih.gov/books/NBK5...

ncbi.nlm.nih.gov/pubmed/201...

ncbi.nlm.nih.gov/pubmed/?te...

clinicaltrials.gov/ct2/show...

alzdiscovery.org/cognitive-...

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Why vitamin B12? Treatment of apthous stomatitis.

ncbi.nlm.nih.gov/pubmed/260...

ncbi.nlm.nih.gov/pubmed/295...

ncbi.nlm.nih.gov/pubmed/282...

ncbi.nlm.nih.gov/pubmed/278...

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Why vitamin D? General health.

academic.oup.com/ajcn/artic...

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

ncbi.nlm.nih.gov/pubmed/206...

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

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

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

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Joe in NY

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-The role of oligomers and autophagy:

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

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

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

ncbi.nlm.nih.gov/pubmed/295...

ncbi.nlm.nih.gov/pubmed/294...

21 Replies
oldestnewest

SO VERY very glad it is working for you, and I LOVE trying your new stuff!

But ataxia is so individual I have SCA1, am 55 with 43 repeats and I really hope all I am doing is helping. Exercise is so good but I do 30mins EVERY day on bike, dance 1hr a week, Shiatsu every fortnight, personnel trainer 3 times week and neurological-physio every 6 weeks. Gluten free diet and mostly very healthy. Hopefully my deterioration is slower, BUT happening x

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Thank you for the excellent report! I have already incorporated some of it already and have noticed some improvement over the last 3 years. I will look into some of your routine to further arrest/improve my battle with ataxia. Please post updates when possible and I wish you continued good health!

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update: 3/18/2018

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Starting today I am backing off on the Niagen to 250 mg twice daily for a total of 500 mg per day. I am doing so because I feel really good, and I want to experiment with how I feel with different amounts of the supplements. I intend to try hard not to change anything else for at least a month. Also, I figure if I feel ok at 500 thats a sizable savings cost wise. I tried this last summer, and I felt like it was a bad idea, but I think my regimen is better "rounded" now so I'm hoping I will not notice any negative change.

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I should note I found a ton more research on EGCG (Green Tea Extract) some of it in humans. It really convinces me that EGCG is a crucial supplement in the battle against mis-folded proteins, and the best part is it's been studied in humans and found harmless at super high levels, and if taken in the caffeine free form it has zero calories and zero stimulants.

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michaeljfox.org/foundation/...

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

scienceofparkinsons.com/?s=...

fegt.org/en/clinical-studie...

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Now sca patient have cured therapy for your new life

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I agree. I have SCA 6 for about 15 years. I am 66 years of age. I do my elliptical for 30 minutes not stop for 7 days a week. That equals 2.5 miles. I also do light to mild weight training on M-W-F. That actually helped me to do housework such as mopping the floors and vacuuming

Unfortunately, I just had neck surgery and I'm worse off than before. I can't stand independently without losing my balance. It looks like I have a long road to recover my independence back.

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So sorry you've had a setback. Praying for you.

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update: 3/28/2018 - I ordered this today:

amazon.com/Integrative-Ther...

and plan on taking 1 pill twice a day.

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Luckily, I'm retired and have set aside a full few days to read, and digest all your posts, links, and replies from other folks, because I share your supplement preferences, and thoughts on how to stop progression. One difference is I have had non medicated PD for about 10-13 yrs, fairly well controlled till hand tremor, and anxiousness about that, along with a few other minor problems brought me to this site.

Reading through all this (what I view as a mystery novel) I can't wait till the end to ask a question, so I'll do it now. What's your opinion re taking natural mucuna, and/or L dopa, along with the other natural supplements which like you, I take. I'm thinking that I may be defeating my purpose by causing my brain to say " Hey, I'm not going to even try to work till my friends MP & L -DOPA GET HERE" !

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I believe strongly that in illnesses like ours medicine needs to be personal and tailored to the individual. If your doctor or homeopath or whomever you trust, recommends trying something, I say try it and see how you feel. Keep a journal with detailed notes and try to figure out if it helps then perhaps try a few months without it so you have something with which to compare. I am NOT a doctor, but my GUT tells me that the "meds" like L dopa are actually part of the problem in the long run because they mask the decline without slowing it, BUT again I'm just sharing my thoughts on the internet, and I think it is critical to talk things over with others that you trust.

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I am most definitely interested in whatever you decide and learn, and I hope you will share your insights in the future!

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update: 4/3/2018 - I think I mentioned this, but I'm posting here as well. About 2 weeks ago I went back to 250 mg twice daily of Niagen to try and reduce cost and see if I feel a change. So far no change in overall performance and well being so I may even back it down to 250 mg in the morning and 125 at night because the human clinical trial to date showed that there is a dose dependent response the seems to start to peak around 300 mg a day so for longterm benefit perhaps that is the right amount. It is so tragic that we have to work out all of this on our own whilst "Big Pharma" spends billions on "blockbuster drugs" and ignores the "low hanging fruit". Ah well . . . c'est la vie :D

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Also I reduced my nasal sprays to once a day and am taking both mannitol AND trehalose in coffee. First cup of the morning has 1 tsp of mannitol and 2nd cup of coffee has 1 Tbs of trehalose.

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update 4/9/18 - today I ordered taurine 1000 mg pills. I intend to reduce my NAC to a once a day 600 mg and add the taurine in the evening in place of the second NAC pill since both are anti-oxidants. Also I want to try and stop building my list of supplements at this time. I never say never, but ight now my plan is to hold here rfor the next 6 months.

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update: 4/18/2018

It's been a week on my "final" ( for now :D ) list, and I didn't think it possible, but I feel even better than ever and my sleep has never been more restful. Here's my list of supps that I plan on sticking to for at least 6 months without change:

10 g mannitol AM in coffee

25 g trehalose AM in coffee

1 squirt of trehalose infused water in my nose PM

375 mg daily of Niagen (1 pill AM, 2 PM)

400 mg thiamine HCl (2 pills AM, 2 pills PM)

266 mg magnesium (1 pill AM, 1 pill PM)

600 mg theracurmin (1 pill AM, 1 pill PM)

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725 mg EGCG (1 pill AM)

600 mg NAC (1 pill AM)

1000 mcg B-12 (1 pill AM)

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1000 mg Taurine (1 pill PM)

50 mg pteropure (1 pill PM)

20 mg PQQ (1 pill PM)

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Thank you sunvox...I am grateful for your research post...I actually believe it will add to the quality of life for many people.

My father was diagnosed with Lewy Body Dementia 5 months ago. We started the High Dose Thiamine protocol of Dr. Constantini and are amazed at the results relative to physical symptoms.

We wanted to start mannitol next week but your posts on trehalose confused me. I thought mannitol and trehalose were almost identical.

Would you please take the time to explain why you separate the two, the ratio and a better description of your intranasal trehalose process (which used to be mannitol).

Thank you for your help.

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Wow....you must be a human rattle 😂 so the amounts you give - is that total daily intake or each pill? Something is certainly working for you and I am forever grateful you take the time to share your experience and knowledge. 😊

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"Human rattle" - that there is funny :D

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Yes, the amounts shown are total daily intake. Sometimes the amount comes in one pill and sometimes not. In each case I tried to use human clinical trial amounts even if the trial wasn't for a neurological disorder.

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I am very interested in your post and have ordered the necessary supplements, what I wanted to ask you is how did you manage the fasting? What hours did you go without food? I have my main meal of the day at about 5.15pm and go to bed about 10 pm I don't have anything else to eat.

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It sounds like you are already doing it :D I do have coffee when I get up with trehalose so I'm not sure if that changes the picture, but basically I do the same. I snack on carrots or nuts or something similar plus Green Tea around 2 or 3 PM and have dinner around 5-6 PM and go to bed around 9-10. So essentially I don't eat from 7PM until 2PM the next day. Now mind you I'm not perfect and there are days when I cheat and have an omelette or something, but that is not the norm, and even then I typically don't have that until 10AM or so meaning I'm still fasting from 7PM to 10AM which is 15 hours and Dr. Bredesen asks his Alzheimer's patients to fast for 13 hours which would be 7Pm to 8AM.

All the best, Joe

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Thank you for the information Joe all the best to you too and keep up the good word, Jacqui

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Thank you sunvox...I am grateful for your research post...I actually believe it will add to the quality of life for many people.

My father was diagnosed with Lewy Body Dementia 5 months ago. We started the High Dose Thiamine protocol of Dr. Constantini and are amazed at the results relative to physical symptoms.

We wanted to start mannitol next week but your posts on trehalose confused me. I thought mannitol and trehalose were almost identical.

Would you please take the time to explain why you separate the two, the ratio and a better description of your intranasal trehalose process (which used to be mannitol).

Thank you for your help.

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Can you share with us how you get these supplements, what brand and what you use to intranasally put in the mannitol please thank you

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