ALS: A Family Journey

I am privileged to work for The ALS Association Greater Philadelphia Chapter. It is a truly rewarding experience to go to work every day knowing you are directly assisting people who are facing great challenges. The stories I hear every day mean a great deal to me personally because of my own experiences with Lou Gehrig’s Disease.

In December of 2004, I was visiting my family in Pittsburgh for my dad’s birthday. My mom had told me that my grandfather had been having some difficulties for a couple months, but nobody knew exactly how he was feeling. It’s likely that even he didn’t understand what was happening. One person with ALS (Amyotrophic Lateral Sclerosis) has told me that he had trouble walking for months before he even asked a doctor what was wrong. Nobody guesses that they have ALS.

When I was home, my grandpap stumbled down one step while we were out at a restaurant and then used his hand to help guide his walking. You could easily tell that not only was he having trouble, but he was frustrated over why his legs weren’t working like they should. My mother, who herself has Multiple Sclerosis, could tell that there was something serious happening.

Just a few months later, in the spring of 2005, he was diagnosed with Lou Gehrig’s Disease.

My grandmother clung to any and every hope that it was something else, whichis completely understandable. People with ALS live on average just 2-5 years from diagnosis. When you hear that a loved one has been diagnosed with this disease, you hope dearly that it will be anything else.

ALS is not as commonly known as cancer or AIDS or Alzheimer’s, but that doesn’t make it any less severe or important. We have treatments for cancer and even AIDS, and while both of those are horrific and I wouldn’t wish them on anybody, there is no cure for ALS and the one drug on the market, Rilutek, only prolongs life by a few months. While the disease carries the name of Lou Gehrig, the memory of the baseball great has faded with time. However, even though ALS isn’t connected with a modern day celebrity, each person that is diagnosed with this disease is very important to the people who love them.

Having seen first-hand how ALS affected my grandfather and impacted my family, I am glad to know that The ALS Association does so much to help people just like him. My grandpap passed away from the disease in 2007 and can no longer take advantage of the services that our organization provides. Worse, he can no longer offer a hug or his always amusing laugh. I could only do so much for him, but we can still do our part for the over 850 families living with this disease in the greater Philadelphia area and the nearly 30,000 nationwide. It has been only five years since he died, but since then, through the work of The ALS Association and other groups, so much has been done to offer new technologies, assistance, and promising research that will hopefully lead to a cure.

I am grateful to the Patch for giving me space to write about ALS. This is just an introduction. In future weeks, I look forward to sharing stories about the effect of ALS on family, how it changes your perspective on life and people, what it means to be a caregiver and advocate, and how you can help. There is a lot that most people do not know about Lou Gehrig’s Disease and you can learn a lot, as well as donate, at www.alsphiladelphia.org.

One last thing. Even though I didn’t know about ALS until my grandfather’s diagnosis, just like most people don’t know much about the disease, the Philadelphia Phillies have been well aware for nearly 30 years. Since 1984, the Phillies have raised over $13.5 million to help patients and families at The ALS Association Greater Philadelphia Chapter, including $858,340 at this year’s Phillies Phestival. Believe me, as someone who has watched this disease first hand, that kind of support and generosity is priceless, as is the support from the thousands of people who participate in the Walk to Defeat ALS®.

Even my grandpap, a lifelong Pittsburgh fan, would be cheering for the Phillies I’m sure.