January 26, 2018 Ralph Reetz
My story has a similar beginning as to many others. It starts back to an unknown date sometime before 2011, at the age of 76, when I was finally diagnosed with what turned out to be SPORADIC Inclusion Body Myositis. Before 2011, I began to notice a very minor difficulty in arising from a chair and I suppose that was the actual beginning but it coincided with aging so it was dismissed. Also, in my case throughout the last 5 years the only pain is that which occurred after the more than two dozen falls. My good fortune is that I have no chronic pain. Most of my falls came from out of the blue and were instantaneous as a result of my knees buckling. It seems that the cause is a combination of weak muscles and balance issues. It also seems that when I fall it is the result of my not intensely concentrating on every step I take when walking and every individual stair that I place my foot upon. If I intensely concentrate, I believe that at this point in my IBM progression, I may be able to avoid the falls. It has been about 12 weeks since my last tumble. It is hard “mind” work but it beats falling.
I have just begun a light exercise program at the VA and at home and I find that there is a very thin line between over doing and not doing enough. As I see it and as it applies to IBM Exercise Therapy it is unscientific and seems to be almost blindly approached based on each individual’s ability. The Therapists simply cannot know the condition of our individual muscles. Therefore, there is a strong reliance on our feedback. The VA and I agreed that for me to begin using a walker (since my falls occur rarely when I am walking) would potentially result in an earlier dependence on a walker and a detriment to remaining mobile for a longer time. So there will be no walker for now. For me that is good news
I am able to drive with excellent reflexes (others that drive with me may suggest differently however they were suggesting that my driving was scary 30 years ago).
I have a permanent, moderately strange feeling (somewhat of a very slight numbness) in my leg muscles (calf and thigh) and my hands are noticeably weak.
Sorry for the many words. Thanks to all who post it helps me to keep my chin up!