Hello, I am 25 and at risk for HD. Growing up I was one of the most physically active people I knew and rode BMX bikes 5 days a week for hours at a time and always just kept in great shape. As I got older, most of my friends stopped and I eventually fell out of it as well. Three years ago I bought a house in need of what turned out to be tons of work and the constant physical work kept me in great shape as well. My main focus now is computer work, so in the last 18 months since finishing my house, I have felt like a vegetable just sitting around. For roughly 10 years I was extremely physically active and now I go months without exerting myself. Ever since learning about HD 5 years ago and how important exercise supposedly was for fighting it, I have had a goal to start working out on a regular basis so that if HD does show up down the road, I will not only be in better physical shape to start with, but I will be more mentally used to working out and it will just be part of my normal routine when HD hits.

I began running two months ago and then read the new article about exercise now being considered possibly damaging to HD patients. I remember hearing about Scott Midyet when I first joined this forum and how he had initially outworked the disease and then quickly succumbed to it. It seemed hard to believe then that someone could be that physically on top of things and still go out so fast, so something like that is starting to make more sense. I am sure exercise would greatly help balance and motor skills with HD, but it also now seems very possible that it can cause your body to generate certain brain chemicals that could become toxic in HD patients or something along those lines. If steroids can generate muscle and improve a persons physique yet wreak havoc in other areas of the body, there's no reason to think that exercise in HD patients couldn't have a similar effect.

So really my question is at this point, what should be done about exercising? This research is new and only limited to mouse models so it is obviously still possible that it is could be wrong. Its a tough decision.

I don't know what research you are talking about. I haven't seen where exercising was bad in any circumstance for any disease.

Scott did really well, but he had a couple of injuries and it stopped him from working out. He had turned a corner prior to that and seemed to be holding his own, until he broke his leg (?). He didn't work out, and he actually strangled on some food I believe. It wasn't that he wasted away. If he had eaten something else that fateful day, he may still have been among us.

I can tell you that of all the things my wife and I tried, just walking did the most to boost her mood and her abilities. Eventually she stopped, for many and various reasons, and her decline began.

And don't chalk up HD to falling off the wagon of working out. You are getting older. You aren't 18 anymore, it happens. Trust me, I'm 50, and I can see a HUGE decline in where I was at 18 and now (LOL). It started in my 20's, because I had other things to do and it exercise hurt longer than it used to.

People don't like to do things that "hurt".

I know that a pHD Will (who posts here) is a marathon guy who is is top shape. He has no symptoms of HD. He's an older guy who really takes good care of himself through diet and exercise.
But I think I do remember reading someone posting here about that study. Not all studies are done well...but I can't comment because I never read it. I just remember someone posting about it. I'll see if I can find it.
Sorry, I ran a search and can't find it now. But I'd say do what feels good for you.

I covered this research for HDSA and my update with my commentary can be found here:

[www.hdsa.org]

I have talked to HD researcher/doctors and I haven't found anyone who thinks that that the mouse research applies to adult patients. They've all seen benefits in their patients who have exercised to fitness. The mice in the study have more than 9 times the number of CAG repeats that they should have. Adult patients have maybe twice the normal amount they should have. I think the study would be more likely to apply to children with high CAG counts. No one would ever think of pushing them to exercise when they clearly don't have the energy to do it. Remember energy levels in the cells are negatively correlated with CAG counts.

The case of the one marathon runner was covered in not one but two articles and both are cited in the study but it's the same guy. We don't know if he pushed himself beyond his limits and we don't know what other genes he has that might influence cell metabolism. I talked to the researchers who reported the case and the man has the physical problems of HD but not the cognitive ones at this point which suggests to me that his exercise may have been excessive.

We try to keep abreast of all the current research and that sometimes results in changing recommendations. However, as long as the weight of the evidence is in favor of exercise for adults with the HD gene,we're keeping exercise to fitness as part of the Lighthouse cornerstones for being proactive. You are right to look at the evidence for yourself though! We never want to be a substitute for medical advice or for your own good judgment after you have reviewed all the existing data.

Marsha (posting on Steve's computer).



Edited 1 time(s). Last edit at 07/30/2011 06:16PM by SteveI.

I was fortunate enough to be a lifelong runner long before I knew HD was in my family. My younger brother is also positive, but with a higher CAG - 43 vs. my 40. He has been symptomatic for a number of years and has never exercised in his adult life.

In addition to my supplement regimen, which I think is helping keep me symptom free, I believe there may be a simple explanation for my success in fighting the disease. It's known that the HD brain is deficient in something called BDNF. BDNF is important in neurogenesis - growing new brain cells. Exercise produces BDNF. A study of running rats showed this, and the effect did not plateau. The more they ran, the more BDNF was produced. If one runs enough to produce enough BDNF to grow enough new cells to offset the ones the HD gene is killing, symptoms should be suppressed.

How much is enough? That's the key question. I'm not going to stop to try and find out. Keep in mind that I'm not a researcher - just an experiment of one as we all are. (Thanks to the late Dr. George Sheehan for that thought).

I'll be turning 65 on August 9th. I recently got my Medicare card and a partial to complete some extensive dental rehab. Life is good. :-)

Will



Edited 1 time(s). Last edit at 07/31/2011 03:49PM by Will.

Reminds me I need to start running again this week!

[www.hdyo.org]

Whats the downside of exercising? You get into shape? LOL

Fred Wrote:
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> Whats the downside of exercising? You get into
> shape? LOL

SORE MUSCLES!!!!!!!!!!!!!!!!!!! LOL