As seen in the Dec. 16 print edition
Richard Kraft, guest writer
I believe that sharing stories has tremendous power to inspire people and create change, so I want to tell my family’s story about dealing with ALS, also known as Lou Gehrig’s Disease. I hope that our experience will help others who are facing this disease and that one day nobody will have to struggle with ALS ever again.
Before my father, Bernie, was diagnosed with ALS, our lives were busy, but normal. We had a family business and, at age 75, my dad was as vibrant and hard-working as he had been at 45. He was always the first one in the office at 6 a.m., after having done his 10-mile bike ride along the beach. He loved to chat with our employees as they arrived to work, and he spent his day talking on the phone to customers and vendors.
All that changed as he began to experience weakness in his legs, feet and voice. After many doctors’ visits, he was diagnosed with ALS, a neurological disease that slowly robs a person of the ability to move, speak, swallow and eventually breathe, while all five senses continue to function normally. Most people with ALS remain completely aware as their bodies degenerate. The average life expectancy of a person with ALS is two to five years from onset, although in rare cases some people live with ALS longer. There is no known cause or cure yet.
His diagnosis was a huge shock to our family. It was hard to believe that someone as strong and vibrant as our dad, who had hardly been sick a day in his life, was now facing an illness for which there was no treatment or cure. Our father, who reveled in long conversations with friends and business associates, would ultimately lose his ability to communicate. We all were enormously saddened, to say the least.
Then an amazing thing happened. After dealing with the initial shock, my dad kept on smiling. He became determined that ALS was not going to stop him from living his life as fully as possible. He continued coming into work, joking with family, friends and employees, and somehow managed to keep everyone’s spirits raised. He lifted everyone around him with his positive attitude and incredible determination.
Of course, there were good and bad days. We soon realized that ALS puts a tremendous burden on families and caregivers as well as the person living with the disease. Luckily, we were directed to an amazing group — The ALS Association. This organization became essential to our lives. For every question we did not even know to ask, ALSA already had the answer: where to find a support group, how to get a voice synthesizing device, what adaptive equipment could make my dad’s daily life more manageable and so much more. With ALSA, we had a group of caring, dedicated people to rely upon who were there for us at every turn.
I remember my dad at his first ALSA Walk to Defeat ALS. He and my mom worked the food table, serving up bagels and information to participants who, like themselves, were dealing with ALS. They came away glowing with the energy of the day and pumped up from finally being able to do something to fight back against the disease. The next year was rough, and my dad passed away just before walk day came around again. As we had promised him, my mom, sister and I organized a big walk team and participated that day in his memory. It was a chance to honor him and to give back to the organization that had provided us with support over the previous year.
In the 10 years since my dad passed, there have been tremendous advances in the understanding of ALS and other neurological diseases. Developments in areas like stem cell research are exciting the world’s top medical scientists who believe we are closer to understanding the disease than ever before.
My family has stayed involved with The ALS Association, helping to support the work they do: providing patient care, funding cutting-edge research and advocating for favorable legislation and public policy. My sister and I help organize the Walk to Defeat ALS each year to raise both awareness about ALS and money to continue the fight. We still have a long way to go, but we refuse to give up until there is an effective treatment and a cure for this disease.