My name is Joe Peck. I am 52 years old and in 2013 I tested positive for the SCA1 mutation with a CAG count of 42. 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 the most important 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 I believe it is the combination of therapies that is critical, I also think the most important therapy is simply running. I run for 30 minutes on a treadmill at 80% max heart rate 3 times a week. I use this exact type, amount and level of exercise because there is scientific proof 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 this exact amount of exercise is effective is because it reduces toxic protein buildup in the brain. ( sciencedaily.com/releases/2... ) ( europepmc.org/articles/PMC3... ) . Lastly, this is not a suggestion for anyone to try anything. I am simply sharing what is working for me. If anything interests you from this list you should be sure to talk to your own doctor before trying anything new.
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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. My current regimen includes the following:
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1) exercise
2) diet - My diet has little or no processed food, dairy, meat, or animal fat. It is rich in cruciferous vegetables, lean protein (including salmon), and low in carbs.
3) fasting daily for 13 hours and eating my main meal several hours before bed.
4) yoga/flexibility stretching and meditation
5) supplements/foods:
once a week .1 g powdered mannitol taken intranasally
25 g trehalose AM in coffee
2 cups of Green Tea daily
750 mg daily of Niagen (3 pills AM 3 pills PM)
2000 mg Taurine (1 pill AM, 1 pill PM)
600 mg theracurmin (1 pill AM, 1 pill PM)
1000 mcg B-12 (methylcobalamin) (1 pill AM, 1 pill PM) (contains mannitol)
100 mg pteropure (1 pill AM, 1 pill PM)
1000 mg thiamine HCl/vitamin B1 (2 pills AM) - (Solgar brand)
2000 IU vitamin D (1 pill AM)
100 mg magnesium L-threonate ( 2 pill PM) (Life Extension NeuroMag)
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Below are links to all the research explaining the "why" of my choices.
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Why treadmill running? (neuroplasticity and enhanced autophagy)
I do treadmill running 3 times a week for 30 minutes at 80% or more max heart (30 minutes at 5.7 mph and 0% incline) with 5 minute cool down walk (3.7 mph and 7% incline) plus additional weight training particularly leg lifts for my quadriceps and kettle ball dead lifts. I run this exact amount because it is precisely what was done in a scientific study of patients with Parkinson's. In that study only patients that achieved 80% of their max heart rate 3 times a week were able to halt progression of their disease. Patients who exercised at lower levels did NOT halt their progression. Also the study specifically used a treadmill, and there was one other study that used treadmills for patients with ataxia and that study also showed a benefit. In other words I believe running on a treadmill for 30 minutes at 80% max heart rate is important. Not cycling, not weight training, not dancing, but treadmill running or fast walking. I realize not everyone can do this, and I certainly believe that ANY form of exercise is better than no exercise, but there is a precise scientific reason for what I am doing, and I believe that is very important to understand. Here is the supporting research:
jamanetwork.com/journals/ja...
jamanetwork.com/journals/ja...
journals.plos.org/plosone/a...
exercisepd.com/uploads/3/5/...
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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?
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Why trehalose and mannitol? (enhanced autophagy)
Trehalose or Mannitol (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...
jbc.org/content/288/24/1757...
scienceofparkinsons.com/?s=...
scienceofparkinsons.com/201...
nebula.wsimg.com/2d91f65f64...
link.springer.com/article/1...
sciencedirect.com/science/a...
sciencedirect.com/science/a...
youtube.com/watch?v=63_xY8q...
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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 similar to trehalose, i.e. mannitol, pass thru the stomach wall undigested at a rate of 0.5 to 2%:
researchgate.net/publicatio...
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Why Niagen and NOT niacin/niacinamide? (Increased NAD+ and Sirtuin activation)
Niagen (cellular repair NAD+ precursors - Niacin/NAM/NMR/NR):
scienceofparkinsons.com/?s=...
healthunlocked.com/parkinso....
hvmn.com/biohacker-guide/me...
cell.com/cell-metabolism/fu...
cell.com/cell-metabolism/fu...
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/pubmed/810...
ncbi.nlm.nih.gov/pmc/articl...
nature.com/articles/s41514-...
researchgate.net/publicatio...
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Why Green Tea? (anti-inflammation, anti-oxidation)
ncbi.nlm.nih.gov/pubmed/250...
ncbi.nlm.nih.gov/pubmed/168...
ncbi.nlm.nih.gov/pubmed/286...
scienceofparkinsons.com/201...
healthunlocked.com/ataxia-u...
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Why Theracurmin? (enhanced autophagy, anti-inflammation, anti-oxidation)
sciencedirect.com/science/a...
ncbi.nlm.nih.gov/pubmed/267...
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 Taurine? (anti-oxidant, muscle recovery enhancement)
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 pterostilbene? (Sirtuin activation, anti-oxidation, anti-inflammation)
Pterostilbene (cellular process enhancement):
sciencedirect.com/science/a...
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...
scienceofparkinsons.com/201...
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Why vitamin D? (General health)
vitamin D (neurological protection and general health):
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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Why thiamine? (cellular process enhancement)
Thiamine (improved cellular energy usage):
ncbi.nlm.nih.gov/pubmed/275...
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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Joe in NY
Partial Possible Treatment for some SCAs.
