My name is Dan and I am 43 years old. Last year I had a DNA test and was diagnosed with Kennedy's after I had a heart attack (thought to be a genetic anomoly). I was also diagnosed as a "borderline" diabetic, which is to say that if I don't watch what I eat, I am prone to falling into the duabetes easier than others.

It's been just over 1 year and I have lost 30 pounds and changed my eating habits. I still fall off the wagon, but each time it's easier to focus.

Throughout this past year I have gone through Cardiac re-hab and have trasitioned into mainstram workouts. I am gaining muscle mass and muscle fatigue seems to be limited. I play hockey and have only noticed improvemnets in the way I skate and my cardio capacity. I have gone cycling with others who are distance/time cyclists and have noticed cramping after 1.5 hours at a maintained 18 to 20 miles an hour. I think that the cramping was due to my lack of water intake.

Usually when I play hockey or any other sport, I find that if I take 2-3 advil after the event and drink water, my cramps are limited.

Does anyone have similar events or other information they can offer with regards to workouts?

Thanks

Dan

Dan, it sound like you are doing great. Keep it up, but just don't over do the exercise portion of your routines.

Bruce

Thanks Bruce, am hoping to get into swimming and running alot more and complete a triathalon in the future...even if it's just a local one.

Dan

I just wanted to update everyone on our progress on receiving answers from our neurologists on whether to exercise. The answer is YES. Exercise is good because it stimulates your motor neurons and muscles. It is something that should be done, but not over-done. Based upon my exercise experiences and the experiences of a few others with KD, I have put together a SMART EXERCISE guide. It has been reviewed and approved by three neurologists. The link to the guide PDF is:
Exercise Guide PDF

Good luck and keep exercising smartly!

Bruce

This message has been edited. Last edited by: Bruce,

We all are know is the best for health . how to useful daily exercise . walking and dancing is just simply and now you have done it. So as soon as possible to start the exercise.

The NIH will provide an analysis of exercise and its impact on those of us living with KD when they complete their trial within the next year.

I can only comment on my experiences and the experience and recommendations of my neurologist. It has been very beneficial in my case, but each person will have to decide for themselves if this is something that is helpful for them.

Hi Bruce,

I tried opening your link but it keeps coming up as an error. Just wanted to confirm that that is, in fact, the correct link.

Thank you!
Rachel

Sorry, try this ...

Exercise Guide PDF

actually dan you have similar story with my uncle. however, right now it seems that you are well compared to my uncle. he's still under medication these days and keep on coming in and out in the hospital. Also, I have never seen him doing some exercise.. You seem like you're fine. just don't overdo the exercise thing then. You might lose a lot of pounds if you overdo it.

- Stephen

This message has been edited. Last edited by: Bruce,

Beginning in September, I will publish a six part series on "Exercises to Improve your Quality of Life" in my Living with Kennedy's Disease blog. These posts are focused on ways to help minimize the impact of some of the symptoms as Kennedy's Disease progresses.

Every exercise has been recommended by a physical therapist and I perform many of them every day.

Yes. Previously, it was felt that individuals with kidney malady might not have the ability to join in enthusiastic action. We know now that patients who choose to accompany an activity project are stronger and have more vigor.

Hi Dan,

My name is Eileen and my husband sounds very much like you. He's 45 and is very, very active. Mountain bike rides, surfs, snowboards, plays soccer, etc. Back in October of last year he had what I beleive was a dry drowning episode. Ever since then he has been experiencing cramping in his face and neck and he is deathly afraid of it happening again and as a result stopped doing every activing and lost a lot of muscle mass. For years after exercise he would later that day or normally during the night get bad leg cramps once maybe twice a night. But more recently the cramping moved to his neck and twitching in the face. No where do I read these same symptoms, everything seems to be problems swallowing or dry drowning. Do you have these neck cramps or face twitches? He just had a swallow test last week and everything came back fine. He had an EMG a few weeks back and that was actually pretty good but did start to show some signs. The EMG was done in the arms and legs, not the neck.

Bruce or anyone if you have any insight for me it is greatly appreciated. Thank you!

Eileen, yes, at times I still have neck cramps. Not as bad as when I was younger, however. The fasciculations are normal for those of us living with KD. They are usually there, but not noticeable to most people Dry drowning is an on again off again situation. He could go for months or years without another episode.

Encourage him to continue to exercise in moderation and safety. It is important to stimulate the motor neurons and healthy muscles.

A normal active life doesn't need to end with KD. Moderation and understanding are important, however. I was still climbing mountains (and falling down them) when I was in my forties. I was still riding my mountain bike (and falling) into my 50s. Everyone is different and we all have to come to some level of acceptance as the condition progresses. But, it should never stop us - only slow us down a little.

Hi Eileen,

I get cramps when I do a lot of physical activity. I've come to think of them as a sign that I may be over doing it. I've found I can avoid cramps and still get good results building strength and muscle mass by doing brief exercise sessions of high intensity at the limit of my strength. I like body weight calisthenics for strength as I can do a few 2 minute long sessions each day which gives me good results without the long recovery times I need for long duration exercising.

Thank you both soooo much for your quick and detailed responses. My husband has been very fortunate thus far because the cramping in his legs really has subsided when he gave up drinking alcohol. The difference is amazing. He still gets them but the occurence is much much less. This is even with a high intense exercise schedule such as mountain bike riding for 12 plus miles at a time. However, the cramping and spasms his face have debilitated him to the point of not wanting to do any kind of exercise or activity. He will try and do a simple task such as picking up sticks in the yard and sure enough the cramping in the neck begins as do the face spasms. He feels they could be triggered by ther cold. Have either of you experienced that or noticed cramping is worse in the colder climates? Because this keeps happening he can't get passed it and therefore doesn't want to do any of his normal activities. Sometimes his face spasms so much that it droops like he had a stroke. Does this happen to either of you? Thank you in advance one again for any information you can share and believe me i am doing my best to encourage him to get back into the world because he really is becoming quite depressed and losing his identity. I have him seeing a therapist, acupuncture, massage, neurologist, speech therapist, etc.... anything and everything at this point.