It took just a few seconds to process what the neurologist had asked. “Has anyone in your family had Parkinson’s?”
Now why would she want to know that when she’s supposed to be telling me how a pinched nerve in my shoulder is the reason my left arm has a mind of its own, itching here, twitching there? And why my dreams, when I do fall asleep, seem so vivid that I’ve twice launched myself out of bed, face first into a hardwood floor.
“You may have a shoulder problem,” Dr. Katayoun Alikhani assessed, “but that’s not what this is about.”
With that as her intro, Alikhani said her diagnosis was Parkinsonism, the starting point for its degenerate cousin, Parkinson’s disease [PD]. I was told it would advance to full-blown Parkinson’s as time progressed and that it shouldn’t be confused with corticobasal degeneration, dementia with Lewy bodies, multiple system atrophy and whatever else neurologists could identify as my inevitable unbecoming.
As my wife, Jeanne, and I left Calgary’s South Health Campus that September afternoon, she asked what I was thinking. “I don’t know,” I replied. Part of me understood Parkinson’s was already morphing into the home intruder who wouldn’t leave. But I was also aware I didn’t have multiple sclerosis or amyotrophic lateral sclerosis (ALS), which seemed even scarier than PD. I didn’t have a tumour in my head the size of a puck, and that made me thankful.
What helped me on the road to Parkinson’s acceptance was a conversation with Brett Wilson, the Calgary businessman who owns a piece of the NHL’s Nashville Predators. We were doing an interview for a 5 Questions segment at The Globe and Mail, where I covered sports and news.
Our conversation turned to health issues, his and mine, and he knew someone with PD, who knew someone else with PD, and so on and so on …
So, with some phone calls and e-mails, I contacted the names Wilson had relayed to me. They were all living in Calgary, where one morning we met for coffee and conversation. Seated around the table was Brian Hein, a financial adviser; Michael Smith, a career stockbroker; Shannon Day, a 44-year-old father of two. And me, the reporter who went to a Super Bowl and a riot broke out; went to a World Series and an earthquake hit; got stuck at the old Chicago Stadium after dark and told no cabs would dare come get me; got stuck in an overcrowded Saddledome elevator right after a Flames game.
All those events came in a one-year span. No wonder why I shake so much.
At the first session of our Parkinson’s quartet, we talked about our backgrounds – where we were born, how we were diagnosed and the adjustments we’ve already made. Hein, Smith and Day had the same answer when asked to identify the one thing they believed most contributed to their Parkinson’s symptoms: stress.
That got my vote, too. Writing on deadline, the bad travel arrangements, the relentless push for more data, more quickly, all that stress took a toll. The group agreed having PD has made it aware of others in difficulty and that it should do something about it. Smith has helped raise $2-million for PD research in Calgary and plans to add to that count.
We spoke, too, of all the scientific breakthroughs aimed at treating and defeating the disease and how this was a pretty good time to have PD, as odd as that sounds. Research is examining what role genetics has in neurodegenerative brain diseases and how to treat them. Day has undergone two Deep Brain Stimulation (DBS) surgeries, a procedure where a device called a neurostimulator sends electrical charges through electrodes implanted in the brain. This regulates brain activity the way a pacemaker works on keeping the heart beating in a regular rhythm.
Truth be told, Day would rather not go through another DBS procedure, but it remains the best option for someone who has found no great relief elsewhere.
“It’s about hope,” he said of another trip to the operating room.
Our group can laugh at its expense. When we meet every month or so, the conversation always turns to what crazy-sounding new development is out there. I was doing my Parkinson’s research when I stumbled across pills made from human excrement, a practice tried for other brain diseases. It’s a tasteless pill, I was told. Then there’s lights therapy where “wavelengths of light can stimulate cellular functions.” An Australian man has found relief by putting LED lights inside a plastic bucket then placing it on his head for hours at a time.
That was welcomed news to our Parkinson’s group, since most of our experiences have been about losing things or gaining stuff we never wanted – failing balance, arm and leg tremors, memory lapses, rigidity, dry mouth. It is estimated the number of people with Parkinson’s will double from 6.9 million worldwide to 14 million by 2040, maybe sooner.
Obviously, it’s not going away as fast as we want it to, so we have to live with it.
We figure the best we can do is move on to lights therapy, which has the odd advocate even if it sounds a little out there. What you do is secure a string of lights inside a plastic bucket, then put it on your head and sit for several hours a day. Until that’s a certified procedure, my neurologist says we stay the course with Carbidopa/Levocarba, the medication she calls “the gold standard.” It has worked for me, but can lose its effectiveness over the years.
At our most recent meeting, I’m feeling more upbeat than I did when I left the hospital wondering, “What just happened?” I attribute that to Day, who says the biggest challenge he’s facing is “the changing of my meds during last year after having two attempts at DBS”; to Hein, who takes our 90 minutes together and sums it up in 15 words: “Living in the moment – and what you do with it – makes you a better person.” And to Smith, who adds the exclamation point, “I think your best days are here. Get your bucket list out and start checking them off.’”
Or fill it with lights and stick your head in it.
We were laughing as we left the coffee shop.