It all started in October 2004, with severe pain in my lower back. Numerous doctors failed to pinpoint the problem. Finally, I went to the Cleveland Clinic, where several tests revealed I had an anterior horn cell lower motor neuron disease. A neurologist referred me to the Eleanor and Lou Gehrig MDA/ALS Center at Columbia Presbyterian Hospital here in New York. On Dec. 22, 2005, Paul Gordon, co-director of the center, told me I have progressive muscular atrophy (PMA), a form of ALS.
|Phyllis and Stan Silver
Our lives changed. Suddenly I became a person with ALS and my wife, Phyllis, a caregiver. The Internet became vital. I read articles about ALS daily that were frightening because they described what I may someday experience. Talking to others and communicating on MDA’s Living with ALS forum has been beneficial, however. The MDA Web sites (mda.org and Quest online magazine) also contain many interesting leads.
MDA has been a fantastic resource. On our first clinic day, an MDA representative registered us with the Association. From that point on, MDA has given us help at crucial times in addition to unusual opportunities. Jackie Puerta, our MDA health care service coordinator, provided the chance for Phyllis and me to be interviewed on a radio station. That was exhilarating!
We attended Wings Over Wall Street, an MDA fund-raiser, where we mingled with others with ALS and several well-known doctors from MDA/ALS clinics elsewhere in the country. Seeing firsthand the generosity of the attendees was very rewarding.
Other events during 2006 also turned my personal understanding of having ALS into a meaningful, emotional and social concern: Meeting others with ALS has been a transforming experience for me. I appreciate that the mundane is nonexistent and we can discuss anything that pertains to our concerns regarding this horrible disease.
The MDA support group is both depressing and uplifting. Though it’s upsetting to meet people unable to speak who have to use assistive devices to express their thoughts, their efforts to attend each meeting and continue communicating are amazing. As time passes, friendships are strengthened there. In this environment the desire to help others is remarkable.
Different functions, including fundraisers and awareness-raising events, caused a metamorphosis in my attitude and spirit in living with ALS as I developed bonds with other ALS patients, caregivers and fantastic volunteers. Being part of their efforts helped me understand the importance of bringing public attention to this disease, and to realize that I could contribute to that mission.
A political first for me, a national ALS advocacy day in Washington, provided a valuable exchange with other people with ALS from across the country and created additional friendships.
I realized that I can still live my life, just in a very different way. I am still the same person. My interior hasn’t changed! But some time passed before I could cope with the inevitability of the degeneration of my exterior.
Now that I have reached the first anniversary of my diagnosis of ALS, the essence of all these events was the ease of communicating with and caring for others who have the commonality of experience. It was the sharing of the inner strength that we all unexpectedly discovered, along with determined spirit and positive attitude, that allows us to push toward a hopeful future.