I think Dave’s Parkinson’s Disease Diagnosis is a good place to start telling you about our Parkinson’s journey. I want to start by saying that I share this information with you with my husband’s consent. This post shares our story and should not be used as medical advice. Please see your own physician for advice specific to your diagnosis and symptoms.
Last fall, we noticed Dave having hand tremors. I’ll be honest, that had happened on and off for a while and I had always chalked it up to being a side effect of one of his medications, which he takes for chronic illness.
It was only when someone we knew was diagnosed with Parkinson’s disease that it hit me. Suddenly, I was very sure he had Parkinson’s Disease and also disappointed in myself that I didn’t realize it sooner (I’m a nurse).
Dave’s spine specialist started him on Ropinirole and we got an appointment scheduled with his primary care doctor. She tweaked his Ropinirole dose because it helped his tremors, but they were still there. His doctor also got a neurology referral sent to the University of Utah for him, because he needed a Parkinson’s Disease specialist for long-term care.
After several months, he was finally able to get in with a neurology provider. She is an ARNP (nurse practitioner) and she has been fabulous. That woman is a ray of hope in what sometimes feels like a dark world.
At his initial neurology appointment, his provider did a lot of different neurological exams, asked a lot of questions, and agreed his symptoms were suspicious for Parkinson’s Disease. She ordered a DaT scan to confirm the diagnosis. It was a crazy expensive test, but it confirmed the diagnosis.
In the past year he has had multiple visits with his neurology provider, Jeanette. Each visit they assess his symptoms to see what is or isn’t improving, ask if he has had more than two falls, and make dosage changes to his medications as needed. At his last visit a couple of months ago, we were all satisfied that his meds were working well and no dose changes were needed. We left that visit feeling hopeful.
I wish I could say things have stayed the same since then. Overall, he is still doing okay, but we are noticing breakthrough tremors on his current medication doses. He has had “off days” in which his meds don’t work as well as usual. He gets muscle cramps in his legs. He has had a couple of falls in the past couple of months. He sees his neurologist in a couple of weeks and I suspect it will be time for another dose change.
That catches you up to where we are now. In the future, I will write updates on Dave’s condition and other helpful information for people suffering from Parkinson’s Disease and for those who love them. Mostly, I just want you to know you are not alone.
Deb