The year of 2019 was one of my hardest living with Myoclonus Dystonia. It was challenging and frustrating. There were moments that I lost my courage and my belief in myself. What emerged were four lessons that were invaluable.
First lesson: trust your gut, and your own advocacy. When at a loss, call up the Dystonia Medical Research Foundation, and gain in invaluable ear of understanding, compassion and advice.
Second, when possible, go to the same professionals who know your whole history. The repeated attempts to be helped locally, stalled and made my health worse, and also, created a loss of trust in myself. The day I found myself back at the Cleveland Clinic, not only did the PA-C neurologist spend over 3 hours, between juggling a full patient load that day. She re-set and re-programmed my DBS to work and continue more efficiently. As a result, I was able to start titrating off medications I had been taking for many years.
Third, if you are lucky enough to have amazing friends and family, they will give you grace and help you through the most challenging times with Dystonia. Keep them close and say thank you and honor them by moving forward when you feel well. I cannot thank my village enough for being there for me, over and over again.
And that also goes for the team of professionals, scientists, clinicians and the DMRF as a whole, that help day in and day out to lend advice to working to diagnose, treat and fund science. Their efforts improve my quality of life and also, feel less alone in the frustrating, isolating times.
Finally, never underestimate the power and lasting love that your four-legged buddies have to get you through your worst days. Allowing me to cry into his fur and enjoying the days when you and your buddy go out for a nice walk and be in the moment. But there are those days in between. The gift of a paw and the steadiness of a dog, shows you that you are never alone.