A Daughter, Her Dad, and Their Parkinson's Disease
I was diagnosed with Parkinson's disease 16 years ago. My Dad was diagnosed 4 years ago. We do not, as far as we know, have a genetic connection to Parkinson's. I have a pretty good head start on him in terms of medications, side effects and disease progression. So, when he began to show symptoms, we recognized it for what it was and made an appointment with a Movement Disorder Specialist.
Trial and error of Parkinson's
I've learned a lot about Parkinson's since 2002. Mostly through trial and error. I learned that in many cases, I had to ask for certain types of care. My doctors did not offer physical therapy or mental health therapy unless I asked. I do not want my Dad's treatment to suffer because he doesn't know the questions to ask or because he can't articulate his symptoms.
So, when he had sleep problems, we made an appointment with a Sleep Neurologist. When he began to have vision problems, we pressed the ophthalmologist to look beyond normal aging and understand the symptoms in the context of Parkinson's. When he started to have pain from stiffness, we asked for a prescription to physical therapy.
Someone to help
My Dad and I now sit down before his appointments and write down his symptoms. He has trouble remembering them at the doctor's office. I ask him a lot of questions. I ask him to explain issues in detail so it helps him talk to his doctor and avoid miscommunication and potentially a misdiagnosis. My Dad once told me that he would give anything for me not to have Parkinson's, but he's glad that he has someone to help him through his Parkinson's journey.
Do you participate in a support group for PD?