When my husband Tom was diagnosed with ALS, we were embraced by the ALS community. But as his health declined, I didn’t really feel ALS was what was stealing my husband from me. I felt more connected to people losing loved ones to frontotemporal dementia, also known as FTD. I did lose my husband to ALS… a particularly cruel and nasty form of ALS that includes FTD.
Throughout September we have highlighted some of this year’s scholarship recipients, sharing their personal stories about the impact ALS has had on their lives. We recently talked with Elita Schmidt to learn a little more about her connection to ALS, what receiving the scholarship means to her, and her future plans in healthcare.
My parents and I live very far apart, but we visit as often as possible. Earlier in my disease, our reunions were more normal: catching up, visiting favorite restaurants, hanging out at the bookstore. We did the things we have always done when we got together. Now, one year after being diagnosed and two years into this disease, it’s getting harder to forget I am sick.
Barbara Dickinson, whose husband, Brian, lived with ALS for nine years, shared her thoughts and feelings about having a loved one with ALS. Barbara is a former national trustee of The ALS Association and president emeritus of The ALS Association's Rhode Island Chapter. Our thanks and gratitude go to Barbara for agreeing to let us put her words on our web site.