I have written Allan’s story before in several blog posts with his permission. I became involved because after two years, the local neurologists were unable to find a cause for his progressive neurological disease and the family needed help. He started with dizziness and progressed to vision/ hearing loss, and muscle weakness. We went to Mayo clinic where he was diagnosed and given a treatment plan of chemotherapy, high dose steroids and physical therapy. Because of the late diagnosis, the doctor stated the hope was to stop the progression and maybe be able to use a walker.
That was all a year ago. Yesterday, I went to visit him during his last chemo treatment. During this year,there has been some slight improvements and a slowing of the disease progression. His balance has not returned.
I like to go to the chemo treatments because we talk. Even though, his hearing has continued to deteriorate, I enjoy our conversations. I can see it is a struggle for him at times to follow the conversation but for me, it is a conversation filled with insight and honesty. He is articulate and humorous in describing his situation. He is aware of the progression of his illness and how it is affecting him. I have also learned to stay away from politics since he is a republican and I am a democrat!
What amazes me most is the humor and courage in the face of this progressive illness. He always has a joke for me and makes light of many situations. He says he is still the same old wise guy. And he is! We both know the disease has not been completely stopped nor will his symptoms abate. We had hoped for a better result.
As a patient advocate, I am witness to the courage of many of my clients and their caregivers. I see in Allan, the strength it takes to live with an illness that has changed his life so dramatically from a vibrant father and husband to complete dependency. He’s not as optimistic about the future as the rest of us and I appreciate his candor.
I would like to think that I could be as courageous in a similar situation. I know if I did have something happen to me, I would think of Allan and how he faces the challenges of his illness.