A recent study of HD mice showed that running made their HD worse. This was discussed briefly on the HUNT-DIS mailing list yesterday. Marsha did an excellent piece on this at [www.hdsa.org]

Marsha's last paragraph notes that this study was done with mice with a CAG of 82, far higher than most humans. She cautions about applying this study result to humans.

As an experiment of one, I'm convinced that running and supplements are helping keep me symptom free. I'm not about to slow down or stop my exercise program because of such a study. I still think that if one produces enough BDNF to offset the deficiency in the HD brain, symptoms can be arrested.

Marsha - thanks for the anonymous mention in the article.

Will

Hi Will! I agree with you! At 56 years of age, with a CAG of 42, I exercise almost every day, and I recently had a check up at the Neurologist, who advised me to keep doing what I am doing, because I have no symptoms. I also take the supplements.

I would definitely be afraid to stop exercising. My daughters are both very fit, too.

Tellie

Hello,

@Will and tellie:
What kind of exercising are you doing? Running, Cycling ? Which distances and how often?

Perhaps there are some more on this forum and can tell us about their exercising?

I am running 4 days a week about 10 km in winter and 2 days running / 2 days cycling (50 - 75 km) in summer.

janhope

Will, you know how I feel about physical and mental actiivity and supplements; make that an experiment of three!
I'm 74 - CAG 40.....pretty much asymptomatic...I've never grown old before.
bob

I'm not a sleek runner type -- I am on the heavy side! I have always enjoyed walking long distances, and have been doing that for many years. But my exercises of choice, which I do at 5-7 times a week, are these:

1. Walking 5-6 miles

2. Biking 10-16 miles

3. Working out on the elliptical for 45-50 minutes (at the YMCA)

4. Working with the weight machines at the YMCA -- my daughters are coaching me on this.

Tellie

janhope,

I run 6 days a week. My weekly mileage varies from 40 to 70 depending on the season - more in the summer. Two days a week I run hard and the others at a leisurely pace. I've been doing it since I was 21. I do a variety of strength stuff 5 times a week - pullups, pushups, crunches, leg lifts. No weights.

I do simple calf, hamstring and quadriceps stretches for about a minute before and after each run. I have had very few injuries over the years. My knees and hips are fine - no hint of arthritis.

My hard pace used to be my easy pace, however. :-)

Will

Lately there have been several experiments and other conclusions drawn from studies that tell people what not to do. I am finding this slightly irritating. For one... the suggestion at the end of the study, or worse yet, a study only loosely related to HD probably is not responsible to suggest that a conclusion can be drawn or a recommendation put forth. Nothing was disproven. Not even for that single strain of mice. If I was a certain stain mouse genetically engineered to have HD with a CAG count that is the equivalent of having jHD I might consider whether all my free time be spent on a wheel. Also if I was that mouse.. I would want that duplicated for me.

For me however, if I was gene positive and I read this, I would want human evidence that this has any bearing to humans or not. Any lab, researcher, or organization who really feels they have something very important will certainly take the time to look for funds and set up human studies to prove this for us. It's really lazy to say a marathoner did worse than expected as a point to support a mouse study.

If I were gene positive, unless someone could say "absolutely, under no circumstance ever exercise 'cause you will get worse faster", wouldn't I worry about this kind of finding. That is so very seldom a true recommendation for anything as a lifestyle choice that it makes me think that I want to go with common sense. Especially because I have the gene for a fatal disease and know what's going to happen doing absolutely nothing. A certain latitude for very slight risk and rewards really are not that consequential.

I am waiting for the last study to say a good diet is bad for HD. Personally I think taking our limited resources to study creatine on worms when human trials are underway is big waste of money, time, and thought. Some of this stuff can ride... because I am sorry, exercise is not killing people with HD faster. It may not be the help we have hope for either. But we have some real work going on about HD, and that's where the effort should be.

Having two at risk kids who are both very active, I am sure not turning them into couch potatoes over this. Actually even the mice, who voluntarily used the wheel must have used it out of enjoyment or satisfaction of some sort. Maybe they had the better HD life if a shorter one?

One thing that really irritated me was when the authors ended by saying that there were human studies which supported their conclusion and gave two references. Now THAT might have alarmed me had I not read both of them and knew that one was a case report of an early onset marathon runner and that another was a discussion of that same case report. One person. And interestingly enough, he had motor onset, which is the classic way of diagnosing people BUT he had no cognitive symptoms (I talked to an author of the case report). So my though is that perhaps this man just overdid it with the running. The idea is to exercise to fitness, not perpetual exhaustion. If you are exercising, feeling good, and keeping your weight up to normal levels, I'd say that was a good sign.

I sat through a speech a few months ago about how people who are passive get HD earlier (although they weren't sure if this was a symptom itself). But hearing that speech instantly makes someone like me (HD pos) want to be the opposite to passive. So now I'm hearing that exercise is bad for me too and it seems I can't win no matter what I do.

I've also sat through many a speech telling me that exercise is great for delaying onset of HD. As it stands I'm not paying attention to either argument. I just do what I feel is best for me and get on with it.

[www.hdyo.org]

I read an article recently about how it was believed that cardio specifically increases the BDNF but now they are learning that weight lifting does as well. My husband is 46 and slightly symptomatic. He lifts, bikes, snowboards (and has been involved with sports since childhood)... he lives to excersize and be outside. I KNOW it is good for him physically, mentally - every possible way - as well as a means for wonderful quality time with me and our children as we can all run around together. Maybe there are instances where overdoing excersize is harmful but I think for most people here on these boards (and people suffering with a multitude of ailments) excersize is a wonderful thing.

Thanks for making this great statement, Will!

I'm 33, CAG 43, on most of Will's supplements, but have also been a runner all my life since I started highschool.

I usually run 3-5 miles, about 4x/week. But increase this once/year when training for a half marathon. And then the past couple years have been substituting out some of my winter running, for P90X dvd's.

One "study" isn't enough to draw any conclusions.

Will you are doing well . Boy is that great . Yet I have to wonder is there a line where if the body is braking down from HD , would it not be possible to put a burden on it from overuse . Similar to exercising when you have a cold or the flu . What about pHD who are tired , no energy because of the body breaking down , would you not have to be extra careful to conserve that energy , not putting added strain to any excess ? I know under normal body conditions exercise is great . But , could there be a fine line , some time period in a pHD's life when exercise could be harmful ? I am just putting those thoughts out there , what do you all think ? My best thoughts. db

That wouldn't surprise me deb as it seems several things have a window of opportunity to be of maximum benefit. Whether exercise is that way, who would know? I don't think that too many people who are having a lot of trouble exercising will continue to do it anyway, unless someone is behind them pushing them. A few might because there are exceptions to every rule.

db,

I think you're right. One of the maxims runners use to determine whether or not to run is "Listen to your body". There is a happy medium for exercise and if you push too hard you'll either hurt yourself or lose the pleasure of movement and stop.

Here's an example. For years I ran 7 days a week, missing days only for severe illness or weather. As I aged I found that one day of complete rest was my happy medium. If I need two days in the future my body will tell me that. I hope I listen to it. :-)

Will

I give huge kudos to those of you out there who are exercising so much. Before kids I exercised almost daily - would take a day off now and then when I felt my body needed it. Now I have the will but not always the energy and usually not the time. It was always done 50% or more for my mental health. I miss it very much and try to squeeze it in whenever I can. I think its benefits should be assessed on an individual basis - the overwhelming majority of people across the board will benefit greatly from exercise.... I am off to exercise right now!!

Will I'm glad your taking care of yourself . And I hope you have many , many days for exercising left . my best. db all together "go Willlllllllll"