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.
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.
I know not everyone with SCA or other genetic disorders can run on a treadmill but even if one can't run I am certain most people can stand on a treadmill and hold the handrails while walking and there is ample research showing that any exercise is better than none.
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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 these genetic disorders take decades to appear then maybe tiny quantities, WORKING TOGETHER, are enough to change the course of the disease. Certainly that is the basis for Dr. Bredesen's ideas. Also, 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. Each piece of my regimen plays a slightly different and tiny role but, again, I think that TOGETHER they are making the difference. It is VERY hard to argue that I am experiencing some kind of placebo effect after nearly 4 years symptom free, when SCA1 is known to be one of the fastest progressing if not the fastest progressing SCA. Finally, I would note that all the supplements on my list have numerous human toxicity studies showing they are safe even at much higher levels than I am consuming, and many have human studies showing health benefits in general.
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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: - I am now a VEGAN and am no longer eating any animal products. This includes no cheese, eggs, or fish. My primary reason for doing this was to control my cholesterol and blood pressure. I still avoid processed foods and simple carbs, and try to focus on fresh produce and whole grains.
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3) INTERMITTENT FASTING: eating only between 1 and 7PM - I'm not crazy strict on this and admit taking trehalose in the AM with my coffee may make this moot, but anyways I normally don't eat until after lunchtime and never eat breakfast.
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4) YOGA, STRETCHING, and MEDITATION
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5) SUPPLEMENTS: (amounts are daily total)
1 cup of Green Tea
50 g trehalose AM in coffee (2 heaping Tbs)
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1200 mg Niagen by Chromadex (4 pills AM 4 pills PM)
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
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!
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.
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.
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" !
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!
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
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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.
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.
It's been a week on my "final" ( for now ) 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:
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).
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. 😊
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.
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.
It sounds like you are already doing it 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.
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).
I was diagnosed (not formally) a little symptoms (balance and coordination) in 2015. Had taken regimen proscribed by neurologist and all symptoms were 100% vanished for an year almost. I discontinued the prescribed regimen and symptoms were again raised.
Now, in due time i have restarted the meds (same from early proscribed) and noticing improvements again but seems it will take time to regain the previous results. I am positive anyway!
Just concern regarding your supps regimen to apply in my current scenario would be helpful? or there is time constrains for commencement? Could you please enlighten your views?
Wish to add some of your regimen to my daily regime. may be that would be helpful to speedup my recovery.
I'm not a doctor so I can not speak to possible interference. Your best option is to take my list to a doctor and ask him directly. My educated guess is that since everything on my list is a food item or a simple vitamin or a supplement used by many millions (like Ubiquinol) there is little chance of interference, but as I said the best course of action is to discuss my regimen with a doctor. (You might also print some of the scientific papers that are relevant so he knows why I picked what I did.) I also would emphasize that vigorous exercise in any form possible is an important part of my routine.
Just concerned that I already passed 4 years but still considering that my symptoms are avoidable with emphasis on right regime. I am still working and just not old to get retirement. I hope to go for many year....Hoping for the best!
I will discuss your regime with my MD for further assistance.
I was diagnosed with a blood test in 2013 and showed my first symptoms in 2016 and have held those symptoms back since February-March of 2016. Although looking back it is likely I had symptoms a year or so earlier, but just wasn't accepting that fact. Most notably I started having trouble putting my pants on in the morning as I wasn't able to stand on one leg and that started earlier than 2016. Today I stand on one leg when putting my pants on.
Wow!, as said, what a resource for us all - thanks for sharing. A thought from a mere layman in these issues....I can easily understand the exercise would help clear the toxins etc and the supplements would help the brain get rid of the miss folded proteins etc, but have you (with your obvious great knowledge) looked deeply into why some people do not absorb stuff from normal food. I have had great results from high dose B1 but had to stop as it upset my stomach so much. The great results lasted for several months after stopping, but my stomach has still not recovered 6 months later which is a shame and now I am trying to get my digestion back to normal. I have used Probiotics and lately introduced full spectrum digestive enzymes which have defiantly improved not only my stomach, but also it appears to be helping me absorb my food as I have more energy and my slight tremor has also gone. I have always suffered with a poor digestion - I wonder if some of these neuro illnesses are due to a lack the stuff we take to address the issues and unless we flood our bodies with it, it gradually causes our problems over the years. So my question to you if you have time to reply and think relevant; do you think there's some evidence that many sufferers of these kind of issues are having digestion issues and or lack of certain enzymes to get the good stuff out of food and into the brain.....? Thanks for all your info thus far.. Fergle UK
Yes, I would agree that gut health or lack there of can contribute to disease including Parkinson's and Ataxia, and furthermore that there is as much variation in gut behavior as there are mammals on the planet.
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I recently went from a Mediterranean Diet to a vegan diet because I believe the research is clear that a plant based diet goes a long way to improving overall health, and interestingly enough the improvement is linked to changes in the gut.
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Truthfully, my primary reason for going vegan was because my wife has arteriosclerosis and had high blood pressure and high cholesterol. My levels were also slightly elevated though not as high as hers. (I have to admit I have a weakness for tunafish sandwiches and cheeseburgers and cheated on my "healthy diet" more often than I cared to admit.) A plant based diet is proven to drastically reduce the risk of heart disease. Since going vegan our cholesterol levels and blood pressure have fallen back to healthy levels. My wife's total cholesterol fell from 240 to 155 mg/dL.
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The problem is if you spend anytime researching the topic you will find conflicting evidence, but for me the simple fact that vegetarians live a decade longer than omnivores is proof enough that there are positive benefits, not to mention the obvious improvements in heart health.
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Anyways, not sure if any of that is helpful, but I certainly agree gut health can play a role in overall health or lack there of.
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The Health Advantage of a Vegan Diet: Exploring the Gut Microbiota Connection
Very useful thanks - will think about vegan but like you I am very fond of my cheeseburgers and steak on an occasional basis. Once a day is occasional isn't it....? ! Cheers Fergle
I edited the post today (Nov. 6, 2019) to show an increase in my daily Niagen from 900 mg to 1200 mg daily split in 2 doses morning and night, and an increase in my one morning dose of thiamine (B1) from 2 g to 2.5 g. I did this because I started feeling tired mid-day lately. Might be life or my old illness Lyme Disease which scientists say stays in your body forever, but I figured I'd try something. There was the minor added point that the price of Niagen went down by 40% in the US when you buy it in large volume on Amazon.
Did the increase help? I’ve been taking niagen and high dose thiamine since July and my energy level has increased and my balance seems to have improved. But I also exercise 6 days and do yoga four times a week....so that may be a factor. Happy Thanksgiving! ( I take four pills of each split between morning and night.)
I made several changes simultaneously so I can't be certain which if any made a difference.
But I can say I am most definitely less tired and better balanced and oddly enough I have perfect speech again. I am a Captain for United Airlines and need to speak on the PA every flight, and for years I have felt that my alliteration was not as perfect as it was long ago. ( I was always complemented on my oratory ability as a youth.) Anyways, I feel my speech is 100% perfect now. Just one more tiny piece of evidence in my one person study to show that maybe my regimen is worth a look by modern science.
This site has been great for emotional support but you can get stuck reading stories of people getting worse. And then you read this...
My neurologists and other so called specialist can’t or don’t believe I’m getting better but you were one of the first stories I read and it gives a lot of hope. I follow a similar regimen but I still have some symptoms. Got rid of the walking stick, change my eyeglass rx 3 times this year to where I may not need glasses any longer.
We need more stories of hope because we are all at different states of mind in this disease. What caught me on this was I am 53 years old also and was diagnosed two years ago after 5 years of searching. Don’t know if this is late onset or early onset. Stuck in the middle.
One thing stands out...never give up!
If you’re like me, sometimes you think why post anything, and then you run into a worthwhile post. Post it because someone might benefit.
Couldn't agree more. Thank you ever so much for sharing. I am certain that you have just helped dozens if not hundreds of people by simply sharing. Joe
Today December 18, 2019 I stopped taking Chinese Skullcap and started taking Sulforaphane instead because SGS has been heavily studied in humans and is even in clinical trial at the moment at John's Hopkins as it appears to have much better bioavailability and works on some of the same underlying principle but even more so. Watch for a post next week on SGS
Hi, I would like to ask you what do you think about the Ashwagandha supplement (also called Indian Ginseng or Withania Somnifera) because they recommended it to me. I ask you why you have tried so many supplements and it is impossible not to know this. I don't know how it works but the information on the internet is that it helps in many diseases, even in cerebellar ataxia, because it improves the balance, I don't know how it works. I'd like your opinion for this product.
thank you for the info, I have SCA1 42 repeats from Chicago, I'm 47 years old. Feel like I'm starting to feel slight symptoms - I've known I've had it for 15 years (I choose to get tested when I found out family history), how are you doing in 2021? I noticed this was 2018. I have started MITOQ10 and feels it helps somewhat.
Sunvox has been banned from this site, but maintains updates on another site. You can click the link to see his latest. Be sure to scroll to the bottom of the post for the latest update.
Thank you for the heads up and link, much appreciated. I noticed he was banned from this group after I posted that question on here and also realized he’s still active (moderately) in the Parkinson’s group. Strange how he was banned for one misdemeanor on a private chat and wasn’t just suspended. It’s like getting expelled from a school for name calling a fellow student, which obviously can’t be condoned but certainly not an admissible offense. Suspension at most, especially when the perpetrator is apologetic. I personally find it overly harsh and illogical, and I’m being as objective as possible here as I don’t know the man. I can only assume there are very sensitive personalities who administer and participate on this forum (it’s certainly no Reddit!). After finding this site the other day I found his inputs/views quite interesting, more than most, not that I necessarily believe them, but the fact that he gave the time to provide his views and research links with the most likely aim of helping others with this condition should be commended, and he’s a busy professional commercial pilot! (I’m an institutional stockbroker FYI and hard to find time to provide thorough/regular inputs on public forum). Anyway, thanks again, take care and stay safe!
Thanks to Mr. Joe Peck for his wonderful report, which has already brought great help to ataxia patients all over the world and is as important as a professional academic paper. I have also benefited greatly from the presentation.I am from China and 40s years old， and was diagnosed with SCA2-43 in August 2010. I have been exercising and taking supplements as recommended by you. Now the disease has not progressed significantly. I would like to hear your opinion about buspirone and tartarine (a drug registered in 2000 from Japan for ataxia). Any recent updates on SCAs in the European region?
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