The ALS Association

Hope is the word that carries me through the process of the disease.

Robin H. Vancouver, Washington

My name is Robin Hill. I have ALS, and I live in Southwest Washington. Before I was diagnosed, I loved my job as a hairstylist in Vancouver. I worked with some of my best friends, and some of my best friends were clients of mine. Although work became impossible when I was diagnosed with ALS, my friends and community of support stayed put. I was diagnosed with ALS in 2009. My husband and caregiver, Mark, works full-time, but he has somehow also found time to make adjustments to our home, including a bathroom remodel that is accessible for my power wheelchair. The ALS Association worked with Mark and me to suggest accessible modifications to our home. The disease has decreased my ability to speak, but through The ALS Association Oregon and SW Washington Chapter’s Augmentative Communication and Assistive Technology Program, I am able to communicate with friends and family as actively as ever. Talking is hard, but I have a voice amplifier to help me communicate. I also use apps from my iPad to help with communication. I am a regular at the Southwest Washington ALS Support Group, which is held once a month in Vancouver. I like to spend time at the group sharing daily struggles and listening to the challenges of others. As with all ALS support groups, the members laugh often and help each other through the practical issues that living with ALS presents. The ALS Association has been there for us from the beginning, helping to guide us through this ever-changing disease. It has been our greatest resource. If we need medical equipment, we can borrow it from the loan closet. If we need emotional support, the Association is there for us. The ALS Association has been instrumental in helping our family through this disease. And hope? Hope is the word that carries me through the process of the disease.

 
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