I met and became friends with writer, Dawn Goldsmith, a few years before her husband, Derroll, was diagnosed with ALS and their lives took a devestating tilt. Since May is ALS month, I'm proud to share Dawn and Derroll's story, and the ALS link to other courageous stories from all across our nation.
We Seek Quality of Life
Dawn G. Oviedo, Florida
We Seek Quality of Life
Dawn G. Oviedo, Florida
"We have a family photo taken when my husband was around age 14. He was the oldest of his siblings – three brothers and two sisters, plus an older half-brother. The photo captures an idyllic moment before a younger brother, Tommy, died of ALS, the half-brother died in a car crash on his way home from Vietnam, the father was also killed in a car crash at the hands of a drunk driver, and before Derrol and his sister were diagnosed with ALS.
In this household, it appears that car crashes and ALS are family things.
We can’t do any more to prevent the ALS, than we can the car crashes. There isn’t even a seatbelt or treatment to help with this disease. We can only seek quality of life.
We are fortunate that it is slow to progress, and my husband can continue to do his job as an accountant. But, we’ve discovered that even a decent employer fights American Disabilities Act regulations, and we have had to find an advocate to help revamp a few elements in the workplace and allow for a flexible work schedule.
Thanks to Ask NAN and the Disability Rights Florida groups, we were able to overcome opposition, and my husband continues to be a contributing member of society. But we see the disease creeping along his arms and legs, up his throat, across his shoulders… impacting his breathing and every aspect of his life.
Our biggest ally, other than The ALS Association is Dr. Boylan at Mayo Clinic in Jacksonville and the various technicians and companies who maintain his equipment – with humor. We laugh when we can.
Last night I suggested, since researchers seem to be taking their own sweet time, that we should do our own research. I have this theory that we can blast the disease out of him. I suggested we start with a taser…. He wasn’t quite so enthusiastic about the idea. He suggested adding more turmeric and bacon to his diet. And more hugs and kisses. More together time. And, more smiles and laughter. We continue to enjoy our idyll, trying not to dwell on what lies ahead. Power chairs, hospital beds, ventilators, and such are nothing compared to the next stage of ALS that awaits us."
