A Different Kind of Kili

In March, 2003, shortly after my 50^th birthday, I climbed to the top of Mt. Kilimanjaro, Africa’s tallest peak, courtesy of my extravagantly generous and fun-loving friend, Bill Harwood.  The peak’s altitude was just a smidgen under 20,000 feet above sea level, with air so thin everyone who makes it to the top is in danger of pulmonary or cerebral edema.  And in such thin air, a helicopter could never fly there to rescue you. 

I trained hard for a year to be in tip-top shape to trek to the tippy top.  I ran a lot and, in my gym, set the treadmill at the steepest angle and at the fastest walking speed possible (just short of breaking into a run), and speed walked that treadmill for three-hour stretches.

Now I’m preparing for a different sort of challenge that’s equally physical and mental.  I wrote the essay below for the World Parkinson Coalition; it focuses on what I need to do physically to surmount this new ordeal called Parkinson’s disease.  To provide you with some visual side trips, I’ll pepper the essay with photos that I took at Kili’s high altitudes.

My life with Parkinson’s is pretty great as long as I consistently work out at the gym or do some other physical exercise.  The exercising I do:  swim with my local Masters swim team; run on a 2-mile trail through the woods near my house; lift weights at the gym and burn calories on a spin bike; and stretch for 60 minutes at home.  As long as I work out five days a week for one to two hours each time, the rest of my life is glorious.  But if something prevents me from working out, I plummet into awfulness.

I was diagnosed with PD in the summer of 2012, but I had symptoms long before that and was under a neurologist’s care for a year before he reached the correct diagnosis.  Fortunately, I was physically active most of my adult life.  I competed in triathlons; climbed Mt. Kilimanjaro shortly after my 50^th birthday; biked over the Japan Alps during a long weekend; and swam up to five miles in open water races, including a bone-chilling 2.4 mile swim in Maine from Peaks Island to downtown Portland.

I did these things right up to my diagnosis, at which point I pulled back so I could go to physical and occupational therapy to fix the things that PD was messing up in my body.  However, both the physical and occupational therapy proved counterproductive.  They weren’t as rigorous as my usual workouts, and the things they were supposed to fix, such as my inability to type with my right hand, continued unabated.  I dropped therapy completely after a few months and resumed working out on my own.

I’m now 62 and need to maintain a high level of physical activity to feel good and minimize my symptoms.  If I go a week or more with no exercise (because, say, I’m working long hours at my job), my limp worsens, my legs get restless at night, I don’t sleep well, and my life looks bleak.  The inconveniences of having Parkinson’s disease (a sudden urge to urinate; drooling; soft voice; inability to cut steak with a knife; arm tremors…the list grows quite long, actually) soon overwhelm me and I start to ruminate on the horror stories I’ve read about people who die of advanced PD.  I get so freaked I’m practically ready to have a Good Samaritan strap me to a wheelchair and push me off a cliff.

Thus, I seek out stories about Parkies who are physically active and who report that their symptoms as a result lessen or completely dissipate.  I publish them here on my blog, primarily to inspire and motivate myself.  Granted, they are anecdotal evidence, but gosh, who doesn’t love a good anecdote?

Here’s a clear example:  In May, 2015, Runner’s World interviewed a 57-year-old Parkie named Michael Westphal.  Michael had been a competitive runner as a young man, and after he was diagnosed he started training again…for a marathon!  There are two quotes from the article that I love and featured on my blog.  Let me paste them here; bolding mine:

“Something about the exercise and feeling good about being out there on the roads seems to kick my body into gear,” he said. “I rarely experience Parkinson’s symptoms while I’m running.”

 Here’s the other:

“My Parkinson’s symptoms lessened after about four weeks,” he said. “I found that I still had incredible endurance. That spurred me on to train even harder and to attempt a marathon.”

I’ve come to believe that physical exercise, especially aerobic stuff that pumps blood to your brain, trumps anything else you might do on your own to counter the disease.  And I’ve done, and still do, many of these other things:  play a musical instrument; read novels; write poetry; write fiction; solve Sudoku puzzles; socialize with friends; eat a brain-healthy diet.  They’re all great and enjoyable, but I need to keep them in perspective.

In this way, my life is active and good.  I just need to remember:  make exercise my #1, #2, #3, #4 and #5 top priorities.