I was attending a local Rotary function in high school auditorium in late February with a few close friends and had taken a somewhat quiet position with my back to the wall. My thoughts had wandered off to the road trip I would be taking in a few days for a doctor’s appointment in Thunder Bay. It wasn’t only that it would be 400 kms in the dead of winter dodging both transport trailers and moose on the snowy highway but the final tests needed to be schedule with my MD. He was getting frustrated trying to find the cause of my stiff left arm and my tendency to drag my left leg while waking.
After more than 1 year in his care, we had eliminated all the options even Parkinson’s which he felt was not the problem. We had investigated the possibility of a cancer reoccurrence since it was about 10 years since I had waged that battle. This follow up appointment was to look at new options for testing. I was hoping to get back to full use of my left hand to improve my computer skills and just to regain a proper gait for walking. My job was stressful enough without these handicaps.
I guess my mood must of shown through the fake smile and the President of the Rotary Club caught me on a return from the facilities and asked what was up. I explained my pending road trip to Thunder Bay and the potential medical implications. Her immediate thought was for my safety and if I had company on the trip down. With no one yet in mind, she insisted that she canvas the membership to find someone to drive with me. A good friend of mine, Andi, volunteered for the assignment and would also be good company for the two day trip. Having worked closely on many projects at work and with Rotary, conversation about work and Rotary would be an easy distract from the real reason for the trip.
Arriving at the Medical Clinic for the appointment I was less than excited by the frustrated look on the MD’s face about future treatment. His best option was to send me to Emergency at the local hospital with the complaint of accelerating symptoms and let them do their thing. Although a bit of a white lie, I agreed with his direction and got there early ahead of what would be a very busy day at the hospital. I was admitted quickly and soon would be dressed in a double back to front hospital gown, not the normal outfit to hang out with a colleague from work. Soon the tests started and the team of interns and doctors (as this is a teaching hospital) seemed to swarm over to my bed, back off and consult then leave one person to wisk me away to another part of the hospital for the tests requested.
They redid every test my MD had done over the past year and at times Andi and I were left to converse in a less than private hallway where my blue gown was somewhat humbling and comical at the same time. The medical team would come back at regular intervals and repeat these seemingly un-medical tests that would soon be extremely familiar. We were not getting an direct answers from the tests but we informed that they felt a diagnosis would be presented by the end of the day as it was. Around 4pm a new face entered the waiting area and introduced himself as a neurologist and suggested he would first do a few quick test. Once again I performed the all too familiar finger tapping, foot stomping and walking down the hall tests one more time.
He was gracious in his manner but still the diagnosis hit me like a ton of bricks. Parkinson’s was something we had eliminated and now the progressive, non curable disease was my new reality. If the prescribed drugs worked on the symptoms, it would confirm my condition. Andi and I just looked at each other with confusion about what this would mean for my future as the CAO and all of the personal complications this may cause in one’s life. It was a relatively long quiet drive home as reality sunk in and the new prescription finding it’s mark with a gradual reduction in symptoms. Any discussion about implications for the future put on the back burner as we addressed the present.
Andi and I had been good friends for almost two years respecting the corporate restriction of relationships between colleagues especially at my level. We stood fast in our commitment to these values but other forces were now in play. My diagnosis had cracked something in my persona. This hardfast CAO was starting to wonder about what was important in life. An opportunity for a job closer to both my sons in Southern Ontario and our cottage in Algonquin Park would also let me downsize my career to be more manageable with Parkinson’s.
The crack also seemed to open up feelings that had been held back for obvious reasons. I saw Andi as more than a good friend who was willing and strong enough to walk through this with me. With the successive interviews and job offer, the final barrier to change my live on two fronts was removed and things soon evolved. Houses were bought and sold, packing done and by April I was relocated in a temporary residence awaiting the arrival of my soon to be bride. The next two years were in a continuos state of change as kids settled in and moved out, Andi finding work in the city and I, taking a package leading to early retirement due to my Parkinson’s. And when would all this settle down enough to really deal with life on life’s terms?
Finally after settling in Peterborough for better access to medical and fitness facilities, I was able to make some headway through the emotional rollercoaster after diagnosis. I was able to get referred to a highly respected Movement Disorder Specialist (Dr. Tony Lang) in Toronto and he led me through the emotional stage of “acceptance” by giving me hope for a reasonable quality of life after diagnosis. Andi was always at my side for his consultation and gave my pain a voice when I stayed quite. No longer a 400 km commute but 120 kms on the 401 into Toronto was a new challenge for my wife that she challenged and conquered. We grown closer over the past 7 years with a common goal of “living well with Parkinson’s” by participating with the local chapter and constantly learning more about our opportunity/responsibility to do our part in staying healthy, fit and wise.
Our need to be intimately aware of my (and her’s) needs demands constant honesty and loyalty as we know how tenuous our situation could be. If we don’t heed the warning signs, know when to jump and know when to not, etc, life could be much less enjoyable. Although Parkinson’s is a major element for us to consider in our decisions it has not eliminated the needs of family, friends and ourselves. Today we are living well with PD, because of emotional “acceptance” and creating a “balanced” lifestyle within reasonable limitations. Our next challenge will be the implication of my “cognitive decline” and making more adjustment to how we manage our relationship and affairs accordingly.
