I had a similar trike at one point.
I do daily B1 and B12 shots. I get them off internet. That, and lots of stetching has helped me keep riding.
Hi Zillet. Interesting subject. I have been wondering the same thing. Which of my supplements make a difference? I’m taking vitamins A, B1, B3, B6, B11, B12, D3 and E. I’m adding Ginkgo Biloba, Q10 en PQQ, I take fresh Turmeric regularly. I feel like the PQQ and Q10 really make a difference in preventing brain fogs. Maybe the Turmeric as well. My neurologist was a bit worried at the amount of supplements I take and ordered a blood test. All Vitamin levels came out slightly too high. She wanted me to stop taking them completely, but I have now gone down to twice a week. My brain fog is really back now!!! 
I’ll keep experimenting…
You are amazing in what you do. I’m 72 with 6 years of ataxia but feel I am losing ability to walk. I try exercising a lot but the last year has been downhill especially after losing a 24 year relationship. I also pray to walk again with some ability to keep my balance. I look at eko skeletons but they don’t seem to be there yet.
In terms of taking supplements, you may want to check out this documentary:
I clicked on the link, and it isn’t free. That might dissuade people xB
Seenie from Moderator Support here. At Ben’s Friends we consider Supplements to be complementary therapies, that is to say, in addition to the therapies led by your MDs.
Supplements, even though they can be bought OTC (over-the-counter, ie, without prescription) they can interact with your prescription medications, so you should always check with your doctors before you do. Another professional who is worth consulting is your pharmacist. A pharmacist can often offer a slightly different perspective than your doctors do.
I’ve just found out that CoQ10 can have an adverse interaction with blood thinning medication, and cause blood clots xB
How old are you? I’m 73 and I love to golf, but finally after 6 years of Cerebellar ataxia I had to give it up this year due to balance issues. I have been doing fitness 4-5 days/wk. as much as I can working with machines and working my legs as much as possible. Just losing a lifelong pleasure due mostly to ataxia which has also affected my legs.
`>I am 74 and have just returned from playing a round of golf. My balance today and during a few recent rounds appears to be worse however it is too early to say if this represents a change in progression. Golf is the only sport left that I can play so I am hoping for the best. I generally walk the course using my push cart as a rollator however I do need assistance on downward inclines. If the course is busy I rent a motorized cart but it takes much of the enjoyment out of the game.
I lift weights 3 x weekly in two hour sessions on machines because I lack the balance for free weights. I cannot walk any distance without a rollator particularly where visual clues are lacking. Around the house or for very short distances I use a tripod cane.
It has been 4 years since onset and diagnosis however looking back I can see that my problem has probably been lifelong. I was good at sports except for those where I had to wear equipment on my feet, hockey, skiing, roller skating etc. I did do these things but I wasn’t good at them.
I feel fortunate that my Ataxia only manifested as late onset although I don’t much like it. Walking normally and running are so natural and yet they are beyond by ability.
I am sorry to hear that you had to give up golf and hope that you can find some way to compensate for your balance deficit that will enable you to start again. I was reading an article in a golf magazine recently about a young Canadian golfer who has one of the bad neurological illnesses M.S. or M.D. since childhood and was told when growing up that he would never play golf. He persisted however became a teaching professional and hopes to play on the professional circuit despite his obvious and serious handicap. I don’t know what his secret is but if he can do it there is always hope.
I am 52, have SCA1, and had symptoms including balance issues, slurred speech, messy hand writing, fatigue, and inability to gain strength thru exercise. All my symptoms are gone. I feel better than I have in decades. I have been like this for almost 18 months. I don’t know how long I can keep it up, but here is a link to a post on another more tolerant forum that I prefer and which I update frequently with any changes I make:
Also, if you click on my avatar on that forum you will find links to a great deal of other information on complimentary therapies.
Thank-you. I’m glad you can still do as well as you are. I miss the sport and although** I struggled with it, I was able to hit shots other than in the sand for the last two years, My companions were very helpful and accommodating but I could no longer keep my balance except on very even ground. Its been over 6 years now since the onset and I still hope somehow I can do more and try again. I try to do the fitness routine but its getting harder and awful when its humid. You are doing much better than me at your age and I turn 73 tomorrow. I hope you can do this for at least a few more years.
Happy birthday shorel
Thanks for your informative post. I am delighted that you are doing so well. Our exercise routines are roughly similar as is our diet (I don’t eat meat but I do eat eggs and cheese).
My deficits are most consistent with late onset idiopathic ataxia where upper body function is relatively preserved. It might however be some other type of peripheral neuropathy which shares similar features.
I developed bradycardia for which I have a pacemaker (which probably induced AFIB), hammer toes, heightened arch, and proprioception all of which can be characteristics of ataxia or other neuropathies. All of this happened around the time of balance deficit onset.
I will bookmark the forum you suggested. I did briefly scan a number of the studies you have referenced and it is obvious that much more has to be done to prove efficacy but probably won’t be because there is little money in it for the pharmaceutical industry. That is not to say that many of the supplements you take lack value and may well correct or improve symptoms. I do take vitamin d in winter and garlic extract as a tonic (again no convincing evidence of efficacy).
Keep up the good work and stay well; your progress will give inspiration and hope to others.
I’m impressed with your treadmill work. If I tried to run on the treadmill like that, they would find me on the floor. I’m 72 and I go to the gym 4 times a week and play golf [not as well as I used to] but I try.
I still have full use of both my arms and legs. I attribute that to my gym work. Exercise is very important for us.
One study does not a conclusion make . . . however, the amount of evidence showing the benefit of exercise in general is fairly overwhelming, and clearly the fact that you and the other gentlemen here are doing great given your situation and age is proof as well. More importantly I give you all “kudos” for not giving in too early. I know how easy it is to become discouraged in the face of an implacable disease.
In any case, my reason for posting is to highlight one study which to me suggests that even if you can’t run on a treadmill the benefit of having one and using it daily to create a consistent and relatively safe exercise routine is invaluable for many ataxic patients:
Joe in NY
I agree with you. Although exercise is not a cure, it is very important to keep the joints and muscles fluid and moving. BTW, I live on LI, NY.
Let me add a slight amount of additional “color” to my “alternative therapy” and the supplements I take.
I am not alone in what I am doing. I have acquired several dozen followers worldwide. Patients with several different diseases including SCA1, SCA3, Parkinson’s, and Huntingtons - all of whom are taking some or all the same supplements that I am taking. The list of people include my aunt and my father. My aunt and my father only tried trehalose and niagen, and they went from wheel chair only to taking a few steps. Tragically my father was forced into a nursing home because he also suffers from Alzheimer’s. The home refused to keep up the supplements without a doctor’s note and within two months he was back to being unable to transfer himself from wheel chair to toilet. My aunt continues to take trehalose and Niagen and continues to use a walker at home. In addition all the people who have maintained email contact with me report benefits of varying degrees. Of course, I have no idea how many people tried my ideas and saw no benefit.
Bottom line: For people with diseases caused by mutant proteins, scientists are only now beginning to realize that it might be easier to clean out the protein and improve cellular survivability rather than repair the genetic flaw and for that there is an enormous amount of supporting evidence showing molecules exist today that clear mutant proteins. Here is a quote from a paper published just a few months ago and authored by the US’ preeminent ataxia researchers:
Perhaps the most promising preclinical therapeutic approaches under investigation
are predicated on the finding that reducing the amount of mutant protein
expressed in the cerebellum can alleviate its toxicity.
You are right. There is little to no human clinical evidence to support taking trehalose, Niagen, thiamine, EGCG, magnesium, theracurmin, taurine, pterostilbene, or vitamin D and hope that they are affecting the progression of my disease. All I can say is that I have by now read over 1000 research reports from cover to cover and I have talked to doctors from Harvard to Cambridge and been to meetings in Boston with pharmaceutical companies and most importantly I have heard from patients like me from around the world that have experienced the same benefits I and my aunt are experiencing and I do not need a study to know that this “cocktail” is having an impact on my disease.
I urge folks that have SCA1, SCA2, SCA3, SCA6, SCA7, SCA17 or Huntington’s to take the studies I link and a copy of my post on HU and talk to your doctor.
You have done a great service for those with neuropathy to investigate and to post the results of these studies. It is my hope that the information you have provided will help myself and many others.
Sufficient observational evidence of benefit might establish a method of treatment for neurological illness. I am going to suggest this to my neurologist who is also an academic to see if I can interest him in developing such a study. If you are aware of any studies of this nature I would be interested to hear.
Thanks,
I have used the treadmill sans weights however I cannot stay on my feet without using the handrails. A walker or golf push or pull cart provides sufficient guidance to keep me upright.
The study is interesting because the retraining seems to linger. I get the same results however they are transitory and need to be repeated daily.
