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A Letter From ALS Patient, Steve Lewis
On Sunday, August 28th, 2005, after attending church services and watching the Red Sox win, Steve Lewis passed away. Only two days before, Steve received the Stephen Milne Adventurous Spirit Award for his honor, determination, and hope in the face of this disease. As part of his nomination for this award, Steve's friend wrote: "Steve refused to center his life on the idea that life had dealt him a rotten blow, and my sense is that while he will die of ALS he will not be defeated by it." Steve was never defeated by ALS. As a long time friend and supporter of ALS TDF and an inspiration to us all, he will be dearly missed.
The last thing I expected six years ago, as my wife, Martha, and I sat in the neurologist's office at Beth Israel Deaconess, was the fatal diagnosis of ALS. A competitive runner and swimmer, retired for four years, our four children out on their own, I foresaw a smooth future. But the hand weakness and muscle twitching that prompted neuromuscular testing foreshadowed a steady loss of strength and a growing burden on my family. After getting the same diagnosis in a second opinion from Massachusetts General Hospital, I began enrolling in clinical trials and reading everything I could find. From the start, nonprofit organizations were there to help. We soon learned about the ALS Therapy Development Foundation, an exciting combination of nonprofit and business models focused solely on helping ALS patients and families today. To learn more, my family began attending their ALS 101 seminars (we have attended 5 to date!), quickly feeling the dedication and caring of their highly skilled staff. We attended and eventually facilitated a small support group hosted by ALS TDF, which has been helpful in our day to day living with ALS. In addition, ALS TDF staff member Mary Beth Parks, a nurse with 25 years of experience in ALS, offered valuable resources and information to us. Before long, we joined the Family and Friends Community and launched our own Website and letter-writing campaign to help raise funds. This past year, together with our friends and family, we planned an event called Chocapella, an evening of a cappella music and chocolate desserts, raising several thousand dollars to support ALS TDF's critical research for patients today. This experience was incredibly meaningful for everyone involved, and enabled us to do something positive with such a terrible disease. I spend these days moving around my home and community in a power wheelchair, but I can't drive our minivan with a power ramp. My breathing capacity is half of normal, so I use a noninvasive ventilation machine at night. Home health aides are starting to share Martha's load, and Extra Hands for ALS , a group of volunteers that help out with various household needs, have been extremely helpful to us. But my loss of self-sufficiency has been more than balanced by the incredible love and support of family and friends, many of them connected with ALS TDF. With time and incentive to reflect on the meaning of life, I feel privileged to live near so many caring people at a time when there is real hope for medical breakthroughs. My wish is that I can help ALS TDF achieve its mission. While most people would prefer long, healthy lives, it is enormously rewarding to focus on pleasures of the moment and to contribute to the wellbeing of others. -- Steve Lewis |
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