I am Penny Hicks

I lost my husband to this horrific disease on August 14, 2020. A mere 18 months after diagnosis. I witnessed a vibrant, warm, happy and charming man become a shell of what he once was. He was a veteran, a union man, a father, grandfather and my love for 35 years. Bulbar ALS robbed us of his voice first. The lack of clinical trials that were available to us in his state were not available to him. The battles with the VA for much needed essential equipment he needed was a daily endeavor. He had the philosophy of “I am living with ALS; until I die from it.” This man still kept giving after death by donating his brain tissue for research. He felt that perhaps by giving his tissue; perhaps someone would benefit and there would one day find a cure! A life cut short too soon.