I'm still me.
Both my parents are refugees from Germany. I grew up in the midwest and had a great childhood and a great life. When my dad was 64, he was diagnosed with Parkinson’s disease. Little did I know, I’d face the same destiny at exactly his age.
For a number of years, I worked as a teacher and counselor with adolescents. Then I spent 15 years as a human resources manager before transitioning to cross-cultural training and work around immigrant and refugee mental health. I had the opportunity to work with a lot of really vulnerable communities, particularly refugees needing help with resettling in the US. One of the communities I worked with was the the Lost Boys of Sudan and I’m still in touch with many of them today.
Outside of doing that type of work and traveling a lot (even living overseas for several years), I was alway very physically active. I loved the outdoors: backpacking. skiing. swimming. playing tennis. I did it all. So when I found out I had Parkinson’s disease, it was an unexpected blow. It all happened so quickly. My therapist noticed a slight tremor in my hand. My wife noticed that my right arm didn’t swing. Soon, my handwriting became illegible and my voice became softer. After my diagnosis, my biggest concern was that my body would not be capable of doing what it used to. I worried I’d have difficulty keeping up with my friends and doing all the things I loved. Fortunately, my fear of being left behind hasn’t been fulfilled. Things are different, but I haven’t been left behind.
One thing that was really pivotal for me was finding others like me. That was inspiring. At the same time, I was very concerned with my life being consumed with my ‘Parkinson’s life.’ I had this disease but I didn’t want it to take over my identity. I’ve been lucky to be able to establish a good balance. I feel engaged with the Parkinson’s community but still have a life outside of that. I’m still me.