The year was 2000, the beginning of a new millennium. I was at concert and my right hand was tapping along to the music, but my left could not keep up. That was strange and I optimistically self-diagnosed carpal tunnel syndrome, I bought some wrist braces and wore them at night, but they gave me no relief. Looking back, this was the beginning of my journey with PD.
The following year I finally went to a clinic complaining about the lack of responsiveness in my left hand and was referred to a Neurologist. Fast forward to 2002, one year later; I was riding my bike to pick up my son at his friend’s house. My phone rang, I stopped, scrambled off my bike, retrieved my phone and answered. It was Dr. Witt, the Neurologist to whom I was referred. “You are so young,” Dr Witt kept saying.
During the year from my original complaint to Dr Witt’s phone call I did a lot of research on neurological conditions that could cause asymmetrical symptoms like mine. I had my suspicions about my diagnosis. “Could it be Parkinson’s?” I asked. “It could be,” he replied. That was not what I wanted him to say, but that was it, my Parkinson’s diagnosis; While this took place in 2002, it does not seem that long ago. I remember getting the diagnosis like it was last week.
A chill come over me and I became overwhelmed with all kinds of questions. What kind of mobility was I going to have? How long was I going to live? What kind of father could I be? My son was 11 years old and I coached his basketball and soccer teams. All of a sudden, my future had a dark cloud over it and I was only 39 years old.
While I did not seem to have an obvious tremor, the left side of my body just did not work as well as the right side. At this point I joined the Movement Disorder Clinic at the U of A so I could get involved in a couple research projects. Primarily I wanted to contribute to our knowledge of Parkinson’s plus I may come across something to help with my symptoms.
For the first few years I only told my closest friends and family. I guess I was a little embarrassed. By 2007 the symptoms got worse, my gate was affected and I was getting comments like “did you hurt your leg?” When I was ready to start taking Parkinson’s medication, I found Levadopa cleared up my gait issues so no one could even tell that I had PD.
I met the love of my life in July 2008. I told her right away but it didn’t seem to bother her. She has diabetes and her father was handicapped so she was used to making allowances. We married in 2010. One of the happiest days of my life.
By 2012 I started experiencing off periods between my doses. I was working for the University as a supervising Technician so I started telling my supervisors. They were very supportive.
By 2013 I was having a hard enough time keeping up with my work that I cut back to ½ time and in 2014 I took long term disability.
In 2017 I had D.B.S. surgery which was fantastic for the first couple weeks, the “honeymoon period” as the insertion of the probes stimulated my brain. The DBS was turned on six weeks after surgery. It was not easy getting used to the DBS. The ongoing challenge in my case is once my Neurologist sets Parameters (Pulse Width, Amplitude and Frequency) their effect and how well they work changes rapidly over the first few days. So, we had a moving target. We would get close so I could see how it could help but then it would drift away. The good news for me is a few years after my surgery Dr. Ba lowered the Frequency and that seemed to be the ticket.
So far, my journey with PD has lasted over 23 years and life is still good. Even though I am not as mobile as I was 10 years ago and my balance is not as good, I try to stay active. I call my bicycle my in-line wheelchair as when I’m off I am still able to cycle better than I can walk. Last year we moved to Cochrane after visiting relatives and were inspired by the amazing view of the mountains. We found our home, set up our own Bed and Breakfast called Gleneagles Villa with a view on AirBnB, and now every morning we look out our window and see our beautiful Rocky Mountains.
The regular support groups offered by Parkinson Association of Alberta have been very helpful, giving me an opportunity to talk about my journey, listen to others in similar situations, and compare notes and tips. PAA has many other programs that I may someday also participate in, when we feel the time is right. I am happy this organization if there for us, whenever we need them, and I encourage everyone to support them, as they provide so much support for those of living with PD.
Blair Harwood
Cochrane, AB
