Ataxia UK
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Hello there

I really do not want to cause trouble and I feel a bit silly but I have been asked in a few private emails for an update so here goes! This proves too that we are all very different.

Firstly I must say that I will be forever grateful to Joe for telling us about trealose and Niagen and I will carry on taking both just in case they are working without me noticing. Unfortunately I have been taking them for several weeks and apart from dodgy guts (you do not want to know!!) if anything my shake (very annoying) has got worse and I am showing no signs of improvement : ( Sorry to say.

To try and help my dreadful coordination I am trying colouring?

I have been trying exercise too after reading this on Parkinson

(not worked so far but hopefully fitter)

Yesterday I upped my Ubiquinol from 200 to 600.

I got this email too and so trying it - rather long but interesting I think

More unexpected results

You are receiving this email because you have chosen to subscribe at Mind 1st (the Pure EPA company).


The toll that aging takes on a body extends all the way down to the cellular level. But the damage accrued by cells in older muscles is especially severe, because they do not regenerate easily and they become weaker as their mitochondria, which produce energy, diminish in vigor and number.

A study published this month in Cell Metabolism, however, suggests that certain sorts of workouts may undo some of what the years can do to our mitochondria.

Exercise is good for people, as everyone knows. But scientists have surprisingly little understanding of its cellular impacts and how those might vary by activity and the age of the exerciser.

So researchers at the Mayo Clinic in Rochester, Minn., recently conducted an experiment on the cells of 72 healthy but sedentary men and women who were 30 or younger or older than 64. After baseline measures were established for their aerobic fitness, their blood-sugar levels and the gene activity and mitochondrial health in their muscle cells, the volunteers were randomly assigned to a particular exercise regimen.

Some of them did vigorous weight training several times a week; some did brief interval training three times a week on stationary bicycles (pedaling hard for four minutes, resting for three and then repeating that sequence three more times); some rode stationary bikes at a moderate pace for 30 minutes a few times a week and lifted weights lightly on other days. A fourth group, the control, did not exercise.

After 12 weeks, the lab tests were repeated. In general, everyone experienced improvements in fitness and an ability to regulate blood sugar.

There were some unsurprising differences: The gains in muscle mass and strength were greater for those who exercised only with weights, while interval training had the strongest influence on endurance.

But more unexpected results were found in the biopsied muscle cells. Among the younger subjects who went through interval training, the activity levels had changed in 274 genes, compared with 170 genes for those who exercised more moderately and 74 for the weight lifters. Among the older cohort, almost 400 genes were working differently now, compared with 33 for the weight lifters and only 19 for the moderate exercisers.

Many of these affected genes, especially in the cells of the interval trainers, are believed to influence the ability of mitochondria to produce energy for muscle cells; the subjects who did the interval workouts showed increases in the number and health of their mitochondria - an impact that was particularly pronounced among the older cyclists.

It seems as if the decline in the cellular health of muscles associated with aging was "corrected" with exercise, especially if it was intense, says Dr. Sreekumaran Nair, a professor of medicine and an endocrinologist at the Mayo Clinic and the study's senior author. In fact, older people's cells responded in some ways more robustly to intense exercise than the cells of the young did - suggesting, he says, that it is never too late to benefit from exercise.

6 Replies

Thanks for that post Litty! Great info! I am now and always have been a firm believer in the benefits of vigorous exercise. Honestly, although I have little proof I believe the fact that I have been running and lifting weights since high school is a major part of me remaining asymptomatic at 51. There was a conflicting study done in a mouse model of Huntington's Disease where they showed that exercise was actually harmful, but other scientists have criticized the study because the mouse model had something like a CAG count of 76 or more which is really an extreme and leads to very early onset. Anyways, put me in the column of exercise fanatic.

On a totally separate note I found a paper from 1995 that examined intestinal absorption of sugars including a disaccharide called lactulose. Mind you the study was not directly about sugar absorption but rather using various sugars to create a profile of healthy sugar absorption that could then be used to diagnose other illnesses, but . . . and here's the interesting part . . . lactulose is virtually identical to trehalose as far as our stomach walls are concerned, and this study was looking at whole lactulose molecules that ended up in the subjects urine, and what they found was that "intestinal permeability" for disaccharides was between 0 and 1.7% with a mean of 0.5%. That goes a long way towards explaining why people with ataxia who are eating trehalose have such varied experiences. Some folks may be absorbing a lot and others may be absorbing nothing.

Repeatability of the Sugar-Absorption Test, Using Lactulose and Mannitol, for Measuring Intestinal Permeability for Sugars

On a positive note I have my first meeting next week with the lead ataxia specialist at Harvard Med to discuss what it will take to initiate a clinical trial of orally ingested trehalose. To me, the most exciting part of that is the fact that several serious researchers and doctors now agree with me that orally ingested trehalose is worth examining. I can't wait to ask his opinion on super saturated sugar water in a nasal spray bottle. My calculations show that 2 squirts a day of trehalose mist into a patients nose might deliver as much as 2 grams of trehalose daily directly to the blood stream, but I have no idea if longterm misting of the nasal cavity might be harmful or not. Anyways, these are exciting times no doubt!


That is so good and well done. Good luck X


Good to read your update. Friend does not take any medication but has been gluten free for over a year. Simultaneously been doing more yoga and has seen benefits especially in terms of more energy, greater strength, which in turn seems to help control balance etc . It is VERY hard work . Every day she carries out some exercise and some improved movements now seem to be becoming more automatic but only very gradually. It seems like enormous effort for small return compared to when she used to go running etc but every little helps is how she's looking at it . She now feels strong enough to maybe get back to some static cycling so will be interesting to see how that works. (Will also be doings some myself after reading the article!)

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Quantifiable results from one person.

My father, who is 79 and has SCA1, moved from VA to CT last June. Since that time he has been seeing my sister twice weekly at her office. She is a licensed Physical Therapist. Two months ago my father could not complete a test known as the T.U.G. test. T.U.G. stands for Timed Up and Go test. It is a simple timed 10 meter walk. Yesterday he completed the test in 2 minutes (with the aid of a walker). For those not already familiar with the story, two months ago my father began taking 80 grams per day of trehalose and 500 mg daily of niagen.

It would appear something is helping my father's SCA symptoms. Hopefully we will have more measurable results in the future.

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That is so great! x


Thanks for this information, Litty! My best to you..., ;o)

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