Obviously everyone is VERY different. I have SCA1 and love to read Joe's tips but they do not seem to work for me so far and I am getting worse and I shake when stressed now (annoying).
Been trying trehalose but gives me a bad tummy but I THINK Mannitol may be working SLOWLY.
I am getting desperate but I am taking Thiamine (B1) too. So both MAY be helping??
Still sensitive tummy but not as bad.
May be doing nothing but thought I would say in case works a bit for others? x
Litty- So excited to hear you are trying mannitol!! It seems to take a long time for people with Parkinson's to see anything, but I've been rereading all the studies on "chemical chaperones" and I'm convinced that's where the answer lies. I think its certainly worth trying for a year at least. Its only a few calories a day.
Have you tried the combo of mannitol, Niagen, and thiamine?
I'm trying this combo but have just started.
Will keep you posted! Donna
You are so sweet and enthusiastic!!
It will be a slow improvement, I think.
Being thick here why try adding Niagen again, when it did not work before? x
Hi Lit -
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Sorry for the slow responses. I am in training in Denver and will have minimal time to myself until next month. Anyways . . .
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I can not say this enough. The science available today is beginning to understand how to PREVENT damage not REPAIR damage.
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You can not measure results in weeks or even months. Results IF they are happening will be measured in years and changes in your SARA score. Also, anytime a patient chooses to try a medication or a supplement it is important to understand WHAT that molecule is doing in the body.
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Here's an example of what I mean. - CoQ10 makes some people "feel' better, but all it is doing is improving cellular efficiency in the body general. It's like taking an aspirin. It is in no way working to alter the problems of the disease. In contrast, trehalose and mannitol, in theory, are bonding to the mutant proteins produced by the SCA1 mutation and helping your own body actually remove it from your brain thus minimizing damage. The science of how this may work is quite extensive. Sadly the research is not in humans because of money so we as patients have to make a judgment based on what research is actually available. So too the research on NAD+ precursors is quite extensive and more importantly directly related to the disease. When the mutant proteins do get to the brain and cause damage part of the reason the damage becomes increasingly severe is because at a molecular level the body loses it's ability to repair itself as the disease progresses and we age. NAD+ is a fundamental building block for cells in your brain. Increasing production of NAD+ is proven to help and even overcome damage caused by these mutant proteins in animal models and to some extent in humans. Again the research in humans is weak so far, but the theory behind the molecule is strong and evidence is accumulating daily.
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I will stop here for now as the reply is becoming too lengthy, but I hope you see the point that a patient needs to truly understand what each supplement or medication is doing if they want to evaluate whether or not it is working. The supplements I list CAN NOT make a person with SCA1 "better", but there is a LOT of evidence to suggest they each work towards minimizing damage and slowing progression, BUT if all it's doing is slowing progression you will never know. The question becomes is it worth the risk and money to try something and does the "something" have any science behind it.
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Bottom line: I will take 10 g of mannitol, 1000 mg daily of Niagen, 400 mg of thiamine, 300 mg of Pterostilbene, 2000IU of vitamin D, and a Green Tea Mega supp until the day I die or they are proven harmful or useless because in each case there is a bonafide bit of scientific research showing it has some hope of being neurologically protective for my disease.
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Joe
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For the record LDN has extensive research showing that it helps in multiple diseases, but again one should understand that it is like taking an aspirin. It helps alleviate symptoms, but it does not fix or slow any of the underlying problems.
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Diet and neurological health in general:
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Trehalose or Mannitol (enhanced autophagy of misfolded proteins):
nebula.wsimg.com/2d91f65f64...
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...
link.springer.com/article/1...
sciencedirect.com/science/a...
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 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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Niagen (cellular repair NAD+ precursors - Niacin/NAM/NMR/NR):
hvmn.com/biohacker-guide/me...
brenner.lab.uiowa.edu/sites...
sciencedirect.com/science/a...
pnas.org/content/early/2018...
cell.com/cell-metabolism/fu...
cell.com/cell-metabolism/fu...
ncbi.nlm.nih.gov/pubmed/256...
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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Pending Human Clinical Trials of Niagen:
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
clinicaltrials.gov/ct2/show...
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Green Tea Extract (enhanced autophagy):
ncbi.nlm.nih.gov/pubmed/250...
ncbi.nlm.nih.gov/pubmed/168...
ncbi.nlm.nih.gov/pubmed/286...
healthunlocked.com/ataxia-u...
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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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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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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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Thank you - yey I get it!! You are so good.
I will take some Niagen but hopefully I will keep slowly improving so how will I know which is working? x
Sadly that is one of the dilemmas with our type of illness. It is progressive but measuring progression is very difficult, and science today is getting good at finding molecules and foods and exercises that may help us slow things down, but they can't stop the disease or reverse the damage. In other words for most people all you can hope for right now is that the progression slows down. This means the patient will never feel "better", but they will hopefully be getting worse slower maybe even slow enough to consider it halted, but it would take a long time to notice this and all the while if you are changing what you are doing then you can never know if any one item was a help or not. Plus it is my opinion that it will take multiple items to achieve any meaningful change. In other words, mannitol alone is probably not enough. The question becomes how much does one do when talking about unproven"alternative therapies" because if you read online and listen to people you will get a million different opinions and recommendations.
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In my life I have a hobby of keeping colorful corals in a saltwater aquarium.
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advancedaquarist.com/2011/3...
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It is very difficult to keep corals colorful and healthy in an aquarium and I have had great success so people from around the world come to me for advice on what to do when they setup a new aquarium. I tell them find an aquarium they like and copy it exactly. That is the surest way to succeed when setting up a new saltwater aquarium.
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I am 52 in 2 weeks. I have a genetically positive diagnosis of SCA! with a CAG count of 42. I am well past the age when I should be feeling something. I had early symptoms, but they are all completely gone. Part of what I am doing is exercising everyday, and I realize not everyone can do that, but maybe my supplement schedule has some merit and is worth trying. Every item on the list is proven safe even at high doses and is either a vitamin, a food item, or a concentrated food extract. For that matter I also think people probably could find a way to reach 80% max heart rate if they really wanted to either with rowing or cycling or treadmill walking while holding the rails. The difference here is a matter of life. SCA does not take a break. Every single day those mutant proteins continue to build up in the brain and cause damage, but it turns out our bodies can fight this attack if we give it some tools with which to fight. Finding those tools without the direction of doctors and human clinical trials is REALLY hard, but I believe I have done it. Will my routine work for everyone? No absolutely not. There is far too much variance in age, length of disease, and severity of the mutation for everyone to respond equally, but personally that would never stop me from at least trying.
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Your online buddy,
Joe 
It’s Ridic isn’t it?
The best thing I’ve tried and works well for me is LDN. It resets supports and dampens down your immune system. Marvellous stuff, said to be a bigger breaktho than penicillin.
It’s easy to get now, through a network of GPS through the ldn research trust - just give them a call - trust me on this one it will make you feel better and calm things down a bit. Not a cure by any means. But a real help.
I did trelahose for 6 months and considering d-mannahose - but I getting a bit fed up of spending all this money on supplements for v little result! Feel your pain Chick, LDN calmed down the shakes , anxiety and pain for me. It works instantly at a very small dose - so you will know after a month whether to continue?
Please try this stuff , it gave me a bit of me back
Good luck and battle on Chick, you can’t beat someone who won’t give up !
Sounds very good x
What is LDN? xx N
Dear Litty, I also have SCA1 and so I always watch out for your posts to see if you are doing anything that I am not. I have suffered with a tender tummy for years and decided to try going gluten free about ten years ago and it really seems to have helped. Since retiring my Ataxia has got much much worse and I decided that if I could do nothing else I would eat what I wanted. After eating everything that I had missed for a few months I have decided to go gluten-free again but I have been cheating a bit 😍.
Apparently people with our type of Ataxia often have gluten sensitivity and this has been confirmed by a blood test that I had at Sheffield. I use a vitamin D spray daily because there are days when I don’t leave the house at all and I also take quite a few supplements that I think help. At the moment I take magnesium, coq10, immunace and menopace.
I am currently trying the anke weights that you suggested some time ago and I am trying to do at least some gentle exercise each day.
Hope this helps
xxx
You are so sweet - thank you x
You are right about gluten. My daughter is celiac and lives with us so I eat very little gluten, and when I do have some I get such tummy ache.
Weights in general help me and this lady talks a lot of sense (but quite long, sorry! I do most things) x
Link will not work - sorry so
Go youtube and type in
'Helping people with multiple sclerosis cope with ataxia'
Understand all supplements but Immunace? Do you think works? x
Hi Litty,
I’m not sure if the immunace works but it seems to contain a lot of vitamins that strengthen the immune system and I haven’t suffered any ill-effects, I guess I see it as a type of multi-vit. xx
Hi there,
Writing this from New York City.. Mannitol was developed in Israel, at Tel Aviv U. The people on th e video are serious folks. The TV channel on which it appeared is also a serious outlet (State channel 1) Nevertheless I saw no follow up on Mannitol. Furthermore, my own neurologist says it will not help nor do anything, .. To believe her or not?? Also the PT here thinks that stiffness and imbalance can be overcome with thought and exercise. Thoughts??? xxxN
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Very interesting.
I bike 30mins every day, and row 10mins. do weights every other but going the wrong way. Have a PT come to me 3 times a week, dance weekly, shiatsu every fortnight and visit my neuro-physio every 8 week (for over 20years now).
There is no proof that it works but I think when desperate and getting much worse, you will grab at anything that MAY be helping.
I got very depressed after my annual check-up by my specialist, last week, and they said my spine is starting to curve and my speech much worse (they wanted me to try botox injections in my throat). She also gave me a new drug for my shakes that you cannot take too often because it is addictive. All this is good to know but I would like to try and find my own answers?
I am desperate so any slight improvements are good but you so need to decide what works for you.
This may not help others but I think it may be helping me slowly and NOTHING has helped unto now xx
Hi litty Botox injection in the throat. What did thay think it would do I've not Hurd of that. My speech has got worse sadly and my swallowing.
I THINK quite a few people have had it (I am a coward) - botox. My speech is bad (having the dreaded cold did not help). Practise as much as you can, sing (badly) and answer the radio. My swallowing is dreadful but it is better when my speech is the better.
Exercise as much as you can though. I had a fall, about a year ago, and it really knocked my confidence and really I am just getting back! But the fitter you are the better you recover, I think x
Hi Litty...just wondering where you purchase Mannitol? I have been spiking my husband's coffee with trehalose for a while 😉 but can't seem to find Mannitol online? X x
Did the mannitol work? Its 8 months later. XO N
I have SCA7, I am feeling better :)!
Dealing with Episodic Ataxia.
help I am scared of losing everything
