I am Susan McDermott

My husband, Joe, was diagnosed with ALS one year after we retired to the Hilton Head, South Carolina, area. It took most of that year to get a diagnosis and that was frustrating beyond words. In hindsight, he was probably having symptoms for at least six months before we moved. Because he was a veteran, ALS was considered 100% service connected, so we were grateful to be seen at the VA hospital in Charleston, South Carolina. Unlike most of the other ALS families in our support group, we received many benefits through the VA. It was very easy for us to get any equipment or supplies we needed, unlike patients/caregivers who have to go without or fight with insurance companies to get what they need. I was in nursing before I retired, so I was able to care for my husband at home until he died. My husband lost his battle with ALS on 8/26/19, just under two years from his diagnosis. My life will never be the same, but I’ll continue the fight to find a cure for ALS in my husband’s memory.