Pardon me if you see me on this forum asking questions a lot. My husband and I just got his confirmed diagnosis and while, leading up to this point, I have done so much research on this I feel like a scientist, there are still some more lingering questions that I think this group can help with.
My husband's CPK level was incredibly high. Over 2000. Just curious at the dangers of this and how to steadily keep that number way down.
Thanks in advance for your input. Really appreciate it!
Rachel, it is Bruce again. Elevated CPK is how my doctor knew something was going on with me. My CPK has at times been 800+, but never more than a 1,000. It was explained to me that an elevated CPK in an individual with KD reflects the wasting away of muscle. When my CPK was high, I was working out every day using weights, running, etc. ... all too excess.
Once I understood that this was an indication of muscle wasting, I began through trial and error and the help of a physical therapist to develop a 'smart' exercise program. My CPK over the last several years is just slightly above the normal range.
Now depending upon your husband's age and current symptoms (when did onset start, progression, etc.), I would recommend that he discuss with his neurologist an exercise program that will stimulate the healthy muscles while minimizing the damage to them.
All this being said, it is possible that some other health issue might be contributing to the elevated CPK. That is why he needs to discuss this issue with his neurologist.
I hope this helps.
Our neurologist is having us meet with the Director of Rehabilitation at Cornell to go over the best exercise regimen. My husband would like to start doing proper exercises now but we have no idea which are the good exercises amd which are the bad.
How often do you check your CPK levels?
Once a year for me (annual physical). At 2,000, it might be better to have it checked more often. The exercises a PT gave me are described in: Smart exercise guide
The key is to not overdo. Stimulating motor neurons is easier than you think. :-)
If your husband is interested in exercise, you should tell him to look into the ongoing study of the effects of exercise on SBMA/Kennedy's Disease at the National Institutes of Health (NIH). Details are available at http://clinicaltrials.gov/ct2/show/NCT01369901 and they are still recruiting new participants. I was a study participant and found it to be extremely interesting and worthwhile.
On the CPK levels, as Bruce said, I check them once a year at annual physical time. There is no particular point in lowering the CPK level since it is a symptom or indicator of SBMA, but not a cause.
I had been waiting for results of the exercise trial Dan, so was surprised to see they are still recruiting. I contacted them and have been approved to start the trial in mid June ... My doctors are thrilled. Think they still have a few slots left, with trials ending in November.
Kennedy's Disease Association
PO Box 1105 Coarsegold CA 93614