My medical vocabulary has grown on a regular basis since my husband was diagnosed with Parkinson’s and especially as he develops new and different symptoms. I never knew, or really cared, what dopamine was or how it worked in our brains before. I now understand just enough about neurotransmitters and synaptic connections to know that they are not working like they should for my husband. I have learned technical terms for his symptoms and the medications that are needed to treat them, things like what agonists and anticholinergics can do in combination with carbidopa and levodopa. I have had to learn much about neuro-this and neuro-that, definitely more than I ever wanted to know.

One of my first lessons was about the loss of muscle control known as ataxia which resulted in tremors and clumsiness. In his case, this presented along with bradykinesia or muscular slowness. He can no longer multi-task thanks to bradyphrenia, a slowing of the processors in his brain. Another long-term issue is xerostomia or dry mouth. He dealt with this for years before we realized it could be a piece of his Parkinson’s. He developed microphagia, or cramped handwriting. My husband had excellent handwriting skills prior to this illness, now even his signature is illegible. He lost his smile to hypomimia, the facial masking that comes with Parkinson’s Disease but thankfully his deep brain stimulation surgery gave that smile back to us.

Then there is a whole family of “D” words. They are the ones that define some of his biggest struggles. When he gets tired he sometimes displays mild dyskinesia or uncontrolled muscle movements. He has dystonia in his feet which causes painful morning cramps. He has dysarthia which slows and slurs his speech and can interfere with his ability to swallow. Swallowing issues are also referred to as dysphagia. There’s a term we often run into called dysregulation and it can be applied to other functions to show their failure. One example is thermodysregulation, his body’s inability to regulate his internal temperature. He is always feeling either too hot or too cold. And of course there are 2 other “d”s that can be a factor in PD, dementia and depression. So far we aren’t dealing with either of those.

I never realized that I would need to have such an extensive knowledge of medical terminology when he was first diagnosed. It is essential that I understand what his doctors are saying if I am going to provide the support he needs. I am getting better at asking questions of his neurologist and the rest of the medical team but my real go-to reference is the Davis Phinney guidebook entitled “Every Victory Counts.” I keep a hard copy on my desk and look to it regularly to clarify where we are and to prepare for where we may be tomorrow. You can find a copy for yourself on their website at Every Victory Counts Manual – Davis Phinney Foundation.