Time goes on and life changes, but I keep going.
In my early thirties, I made a major life change. I went from being in poor physical shape to being incredibly active. I biked parts of Europe, the most difficult being crossing the Alps. I also biked in Great Britain, the Highlands of Scotland, the Lake District, and Wales. When I was home, I was leading bikes rides for my local bike club in New England. I led as many as 17 rides a season, many of them cross country. I also was a member of Cycle America and went on three tours with them. During one tour with them, I rode from Minneapolis all the way to Massachusetts so I could attend a wedding! I thought I could do anything.
After I retired, I decided to move to Boulder, Colorado. Life was perfect. I was doing everything I loved in a place that I loved. But in 2013, things really changed. I started to notice changes in my body. Little things at first. I would stumble while I was hiking. I blamed myself for being clumsy. I had trouble keeping up with my biking group like I used to. I thought I must not be pushing myself enough. I was just in denial. But, gradually, it became worse. One day while hiking, I just couldn’t keep up with everyone else at all. That was the last day I went hiking in a group. I knew something was really wrong.
Soon after that, my balance became an issue. I couldn't even step off the curb without help. I was scared and confused. I finally went to a neurologist, who sat me down in a room. On the table next to me was a box of tissues.I knew the news couldn’t be good. But when he told me that I had Parkinson’s disease, I was relieved. I had a direction to go in. I could finally move forward.
Despite my diagnosis, I still pushed myself to do the things I loved. One of those things was trekking in the Himalayas. I did it twice more after my diagnosis. I hate to think I won't be doing them again but reality is reality and I don't know what the future holds. Something that has kept me motivated has been the relationships I’ve formed through the many organizations I’m involved with. I’m fortunate to live in a place where I have access to so many great programs focused specifically on helping people with Parkinson’s disease. Things like dancing, boxing, singing, and so much more. I’ve made lifelong friends through these groups. I’m also really lucky to have the support of the Parkinson’s Association of the Rockies and the Davis Phinney Foundation.
Yes, my life is different now, but I’ve become very strong. Parkinson’s has made me realize that I have this inner strength to draw on. Time goes on and life changes, but I keep going. Being physically active and staying socially engaged is what I rely on.
It is possible to live well with Parkinson’s disease.
Before Parkinson’s, I had a successful career as a news writer, editor, and educator. I was happily married and had a wonderful family. I had a really full life. But, in 2014, after a very confusing 6 months of symptoms, I was diagnosed with Parkinson’s disease. I knew very little about it. My first reaction was ‘What is going to happen to me? What’s going to happen to my family?” Like most people who received this diagnosis, I was left in the dark. There was no place for resources. But I had an enormous advantage. I was a reporter. I was an editor. So i went out to report on this disease and learn as much as I could about it.
That's when I became a patient advocate for people with Parkinson's. My goal is to increase education and help find support measures for people suffering with this. Parkinson’s gave me a new purpose. I started writing a blog about the disease, which eventually led to my book: "Counter Punch: Sparring With Parkinson's”.
Today, my primary focus is to figure out how to make contact with people who’ve been recently diagnosed and turn them on to the resources. I want people to know Parkinson’s is not a death sentence. It is possible to "live well" with it. I am doing so now.
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.
Being able to work for others has been the best thing about Parkinson’s.
When I was 48 years old, I was diagnosed with Young Onset Parkinson’s disease. It was the last thing I was expecting to hear. I went to a physical and the doctor said everything looked great. But as my appointment was ending, I mentioned to her that typing had become difficult. My left pinky would stick and I’d constantly end up with a row of As. What followed was a whirlwind. She had me perform a couple of finger movements before telling me that I needed to see a neurologist. I was able to get an appointment that same day during which I was diagnosed with Parkinson's disease. The first thing that crossed my mind was ‘How long do I have to live?’ I really had no idea what Parkinson’s disease was.
I quickly learned that while Parkinson’s wasn’t going to kill me it was degenerative, meaning it would get worse every day. I realize that my body had been changing long before my diagnosis. In fact, I had been showing the symptoms of Parkinson’s since I was a young man. Some 15 to 20 years earlier, I lost my sense of smell. I also had a tendency to hang my left arm, another sign of the disease. Experts believe that by the time these symptoms show themselves, I had already lost 75% of my dopamine in my brain.
Before my diagnosis, I was busy with work, family, and enjoying my life. After my diagnosis, I began to focus on the people that had Parkinson's. I wanted to be an advocate for those going through the same thing as me. I immediately got involved with organizations near my home and across the country. Today, I see my ambassadorship within the Parkinson's community as a bit of a twilight career where my job is to educate and inspire people. Being able to work for others has been the best thing about having this disease.
Parkinson’s has made me a better person. A stronger person.
Excerpt from Capturing Grace, a film by David Iverson, created in association with Dance for PD®