Oro Valley, AZ
My name is Don Nemke and I am 75 years old. I have had symptoms of FSH Muscular Dystrophy starting 63 years ago and was formally diagnosed about 57 years ago. I’m currently in an advanced stage of FSH.
As an older patient with FSHD muscular dystrophy I have decades of experience with adapting to an ever-changing body and the loss of function caused by FSHD. I'm excited to share with you what I've learned through many years of observations and research.
Those of us with muscular dystrophy are very fortunate to be facing our challenges now rather than in the past. In just the last several years, there have been significant scientific breakthroughs regarding the underlying biological processes causing many forms of muscular dystrophy, including FSHD. These discoveries provide hope for many of us that potential cures are likely to be appearing on the horizon soon. In addition, the accelerating pace of technological innovation helps us to live more independent and self-sufficient lives.
Muscular Dystrophy has been a major factor in my life for many years and I have had the opportunity to experiment with many aspects of trying to maintain or maximize the quality of life within the context of a constantly deteriorating physical condition. For me, trying to deal with the challenges involved can be divided into four interlocking principles: maximize safety, achieve the greatest functionality possible, maintain independence and gain as much knowledge as possible—inside and out.
Having a solid base of both inside and outside knowledge not only enables us to be more effective and efficient in finding helpful tools and solutions for the physical difficulties, but also provides a basis for developing our own fixes or helpful support where generic solutions are inadequate or where solutions for our specific needs don't yet exist. When you have done your homework, you are better able to know what questions to ask and what answers are helpful.