When You Have Parkinson’s Disease Find A Movement Disorder Specialist

I live in a rural county where the nearest Movement Disorder Specialist (MDS) is two hours away; mine is two and a half. Thankfully, there is the option for a visit to be done online. Tonight I had a video visit with my MDS, who's with the Stanford Movement Disorders Center. Only last month, I had an in-person visit with my local neurologist. With these visits so close together, the difference in what my MDS can offer my challenges with Parkinson's compared to my neurologist couldn't be starker.

My neurologist is great, but he is not a specialist in Parkinson's. Tonight my MDS and I were strategic with our time, and she asked upfront what I would like to discuss. We planned our visit to ensure we covered everything, so I let her know what I wanted to discuss and what I'm struggling with.

One big struggle of mine is about 1-1 1/2 weeks before my menstrual cycle, my symptoms worsen. It's like there is some internal wall inside of me that won't let my meds through. This worsening symptoms phase lasts for 3-5 days. Since my meds don't work as they usually do at this time, my MDS asked me, "How long does it take on average for my medicine to kick in?"

I said 15-30 minutes on average, but it could be an hour or longer during this time of the month.

We identified when my meds don't kick in where my problem was. Was it with my tremor or with walking and slowness? It's with walking and slowness. Then she offered a solution that I agreed with!! I am always extra cautious, so to get me to agree first thing says something :)

Throughout our discussion, she asked continued to ask pointed questions. Nothing like this happens with my neurologist. He is great, very diet and nutrient-focused which is fine . In contrast, while we discuss my medications, exercise, and diet, it's not at this level of focus and consideration.

I was diagnosed in December 2013 and had been going to the Stanford Movement Disorder Center from 2014-2017. My insurance stopped covering Stanford in 2017, and I was devastated. Since there is no local Movement Disorder Specialist in my area, I went with a neurologist.

When I got married in 2020, my insurance situation improved dramatically, and now I can see my MDS once again. Many of us know too well how challenging navigating the health insurance world can be. But if you have Parkinson's disease, do all that you can to have a Movement Disorder Specialist that you regularly see, that knows you, and your challenges.

It will make your journey with Parkinson's disease easier to navigate!