When I was diagnosed with Progressive Supranuclear Palsy (PSP) I decided to write a poem about it since the disease is very rare, and very few people know about it. I decided to write a poem about it to help people understand what it is that people with PSP experience.
With PSP I have difficulty walking since my brain has difficulty communicating with my legs. My husband named my legs, Ramona for my right leg and Lucy for my left leg. As I struggle to walk, we talk to Ramona and Lucy to get them moving. Now my physical therapists call them by name too.
Loss of balance is one of the traits of PSP and other Parkinson related illnesses. The poem expresses the fear we all have. I’ve fallen many times and it’s a scary feeling. This poem was published in a Parkinson’s newsletter.
I decided to donate my brain to research when I die. Hopefully someday there will be a cure or treatment PSP and other neurological diseases.
It’s hard to have a chronic progressive disease. I think of my life before PSP and how nice it would be to have a day off from this disease.
I feel it does take a lot of courage when people are facing a serious illness. There are many challenges every day and many opportunities to lessen the frustrations. I have been fortunate to find a creative outlet through my poetry and I hope it gives people with this illness some inspiration.
I wanted to write a positive and uplifting poem about all the people with PSP. We are a rare minority.