One of the dictionary's definitions of "compensate" is to "adjust or make up for shortcomings."
My body's ability to compensate never ceases to amaze me. Over the last thirty years, I have watched as muscle groups became more important than individual muscles. I have seen the benefits of locking the quads to prevent the knees from buckling. And, I have become accustomed to using the shoulder muscles to help lift the arm above the head when I am holding something. The body's ability to compensate is what keeps us active and still involved. If the body did not compensate for a dying muscle, I would hate to think what kind of condition I would be in today.
Unfortunately, there are no muscle groups to help compensate for the loss of the use of my left thumb and index finger. Over the last several years my left thumb has given me problems when temperatures drop below 50. When temperatures drop below freezing, the left thumb stops functioning altogether. When this happens, picking thing up, opening jars, washing dishes, typing, and holding objects become difficult. I have to remain focused on what I am doing as well as being extra careful during these times.
This winter my left index finger has taken on the same characteristics as my thumb. It was difficult enough before, but now trying to use my left hand during the winter has become a real test. When I am in my wheelchair, my right hand drives the chair. This leaves the left hand to pick up and carry things like a glass of water, coffee cup or plate. If the thumb and index finger no longer work, I cannot safely grasp and hold things as I transport them from one location to another. My hand exercises help some, but not enough. I am concerned what will happen next winter if I cannot find something to help. Hand warmers seem to help some, but not enough. Someone mentioned heated electric gloves. That might have to be the next purchase.I am seeing my neurologist in two months and plan on discussing this issue with him. Fortunately, spring is finally here and the days are warming up. When temperatures were in the 70's last week, my left thumb and index finger were almost back to normal.
Are any of you experiencing similar problems?
Hello Bruce,
ReplyDeleteI'm brand new to this blog. I'm glad it's here. Thank you for creating this forum to express your thoughts and experience, that it can benefit others.
After at least eight years of pursuing a diagnosis, I've finally been diagnosed as a KD patient. I'm 1 in 40,000! Fortunately, I'm still walking, albeit it's very difficult, especially with any stairs. One issue I've been wondering about is whether or not anyone, including yourself, has an extremely high CPK (creatine phosphokinase) level. The normal reference is 0-200. While one Lipitor several years ago, my CPK was 4200! Within two week of stopping Lipitor, it declined to 2000. That was about seven years ago. I'm still in the 2000 vicinity and have gone as low as 1300+ though usually it's in that 2K range.
Just thought I'd get your experience on that. Have you heard of a similar symptom?
Thanks,
Peter
Peter, thanks for reading my posts and your kind comments.
ReplyDeleteCreatine phosphokinase (CPK) is an indicator for those of us with the mutation. Clinically, creatine kinase is checked with a blood test. Elevated CPK is a marker of myocardial infarction (heart attack), rhabdomyolysis (severe muscle breakdown), muscular dystrophy, and in acute renal failure (kidney disease).
My neurologist explained that the elevated CPK is a sign of muscle degeneration (residue from the muscles). The higher the CPK the more the deterioration at the time. Through a careful exercise program, I was able to reduce my CPK by 2/3rd. When I was still lifting weights and pushing myself too hard, the CPK was high and increasing. My one brother with KD has a very high CPK and he has never been able to bring it down (1,200-1,500 range).
Reference your situation, I would check with doctor again because 2,000 - 4,000 seems extremely high. Something else might be making it that high. It sure would not hurt to validate that it is only related to KD.
Thanks again, Bruce