My PD Story

I was diagnosed with Parkinson’s disease (PD) the day after my third child was born. I was 38 years old and running our family home building business. Initially, my wife and I decided to keep this news between us. I didn’t want my diagnosis to hurt the business. Besides, we had three kids under four.  

People would think Parkinson’s is why I was tired and distracted. The medications worked on a lot of the symptoms, but there were some tells. I used the medications when I knew I would be around people, but at home I was under medicating.  

A few months into my diagnosis, I was prescribed big therapy. Pretty quickly, the therapist said this isn’t for you. At my age and stage of the disease, he felt I needed something more challenging and introduced me to a former patient who was skiing in Vermont, rock-climbing and organizing cycling trips in the Rockies.  

I joined him and one other person for a rock-climbing session. It challenged my body and my Parkinson’s in helpful ways. It was a rush — I was hooked. The group grew, we called ourselves the “Shaky Six.” Today the group is part of UpENDing Parkinson’s, which is comprised of over 400 climbers across more than 25 gyms nationwide. But that’s a story for another day. 

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As my Parkinson’s progressed, I felt it was time to start sharing my diagnosis with my friends and colleagues. Looking back, I had nothing to be nervous about but at that time, I had concerns. Would I lose friends? Would I lose customers or the confidence of my employees at my homebuilding business?  

I flew out to Kansas City to tell my best friend. He was great. In fact, the very next time I visited him, we attended Kansas City Moving Day together. At work, the response basically restored my faith in humanity. Competitors showed me grace and people really showed up for me; I do not take that for granted.  

I think from a business perspective, having this disease has been good. I have to try to think ahead since I don’t know how I will progress. I know it’s a well-run business. As the owner, I want to be indispensable, but if I’m doing it right, I can be dispensable. It’s humbling to say, but it’s true.  

Five years in, I needed to increase my medications. I was useless between 1 p.m. and 5 p.m. I was taking 20% less medicine than I should have, which was already about 50% of the maximum daily dose. Was I already running out of runway? After only five years? That changed my thinking and I started looking at deep brain stimulation (DBS) as a treatment option.  

Yes, it was brain surgery. Yes, I had a lot of questions, but I felt confident going in. After the procedure I reduced my meds by about 70%. I have also found that my body is receptive to this treatment. I adjust myself about 30 times a day. When I do it right, it helps me get over the slump or under the hump.  

There are different settings I use for different activities — climbing, walking, driving, typing, general being. The near-instant response time is a godsend. I don’t have to predict how my meds now will impact my symptoms in an hour. 

It’s been six years since my DBS implant. I’m taking more meds now but still less than before DBS. That’s the nature of this disease. Sometimes people ask if I should have gotten DBS sooner, but for me the timing was right. Sometimes you need to get through the bad to get to the good. When you get worse before you get better, you appreciate the better so much more. 

Learn more about deep brain stimulation and other Parkinson’s treatment options.