PatientsLikeMe ™

I was diagnosed with Parkinson's in 2007, having had a hand tremor since 2002.  But around 1995, I had been running two or three miles a day, and wanted to go farther on weekends - six or eight or ten miles.  But I was only able to get to five, and then only when I ran very slowly.  I didn't breathe hard, my pulse wasn't high, I just couldn't run fast. 

Going back further, in the mid-1980s I noticed my handwriting was getting quite sloppy.  When I wrote checks, I practiced writing a few lines on scrap paper first, to warm up my hand so my writing was better. 

Even earlier, about 1982, I experienced bad calf cramps when running.  I would get them for a couple of weeks in the spring, and again in the fall.  I couldn't seem to do anything to prevent them. 

In 2002, I had been running three miles a day, three days a week, at about nine minutes per mile.  In 2003 I was still running three miles three days a week, but could only go at about ten minutes per mile.  In 2004 I could only run about two miles at a time, and would have alternate running and walking the rest of the day.  By 2005 I could only run about a mile, at 10½ to 11 minutes per mile.  By this time my writing had deterioriated so that it was almost illegible, and my typing had gone from 70 words per minute to about 20.

Then, in late 2005, I twisted my ankle.  It didn’t heal, so in mid-2006 I went to an orthopedist who put me in a cast for two months.  After that my ankle was essentially healed but I still couldn’t walk.  Also in mid-2006 I saw a neurologist about my tremor.  He diagnosed Essential Tremor (which runs in my family; that’s why I waited so long to see a neurologist).  He had me try a number of medications; Primidone helped me write legibly if I wrote very slowly.  He also had me try two sinemet per day; that did nothing at all.

By 2007 my condition had deteriorated still further.  I had bad hand tremors on both sides, and couldn’t walk without a cane.  (And even then, I couldn’t walk very far.)  When eating, my hand shook so badly my wife feared it would miss my mouth.  Dressing and showering took a lot longer than before.  So I was referred to another neurologist, a movement disorder specialist.  When I was diagnosed with Parkinson’s, I was actually relieved. I had been unable to strengthen my ankle, and feared I had ALS or something similar.  When I found out it was Parkinson’s, and was treatable, I felt much better.

The neurologist put me on sinemet – ½ pill daily the first week, one daily the second, 1 ½ daily the third – until I went to four pills per day during the eighth week.  The sinemet did absolutely nothing until I went to 2 ½ daily during the fifth week.  Then my eating, showering, and dressing improved, along with my energy, but my writing, typing and walking were not helped

As I went from 2½ to 4 pills daily, I kept hoping that things would improve some more, but they didn’t.   I was able to exercise more (instead of two 15-minute workouts per week, I could do three for 20 minutes), which helped my mental state.  I’d been very active my entire adult life, and had used exercise – usually running - to overcome the stresses of work and of life in general.  To be unable to run any more was devastating.  I used the exercise bike or the elliptical machine instead; by August 2007 I was able to walk a few hundred feet at a time on the treadmill, by holding on to the rails. I was hoping I could eventually improve my fitness to the point where walking wasn’t too difficult.

By summer 2008 the neurologist had added Azilect to my medications and I had gone to five sinemet per day.  Although my fitness was improving slowly (I could walk a mile or so first thing in the morning), I would go off shortly thereafter and not be able to walk well most of the rest of the day.  My writing and typing were also still quite bad. It looked like I was going to be semi-invalid (at least, that’s what I considered my condition to be) the rest of my life.

In June of 2008, I emailed the Doctors at the National Parkinson’s Foundation Ask the Doctor forum.  You can see the posts for yourself.  That summer, I went to six sinemet per day, my writing and typing returned to normal, and my walking became normal about half the day.  By June 2010, after my neurologist added more drugs (Comtan and Mirapex), my walking became normal most of the day.  Most days I walk two or three miles in under fifteen minutes per mile, and I can occasionally even run a mile or more.  And I’ve found that if I miss a few days of exercise, my medications don’t work nearly as well.

The exercise also needs to be specific – in other words, while using an elliptical machine or an exercise bike is helpful, if I want to walk well, I need to do a lot of walking or running.  I’m still able to slowly improve my fitness – every three or four months I notice I can exercise for a little longer, or go a little faster.  When diagnosed I could only average about ten minutes of exercise daily; now I’m doing forty to fifty.  Most of my exercise is aerobic – mainly walking.  Once a week I’ll lift weights, and I also do a few minutes of balance exercises daily.  I also try to work on speed, by occasionally walking fast, or running fast, or cycling fast.

I've posted about dystonia here and here. I've posted about exercising for strength, endurance, flexibility, speed, balance, and coordination.  A particularly interesting article concluded the natural worsening of symptoms associated with PD can be effectively counteracted by a properly designed IRT [intensive rehabilitation treatment, essentially strenuous exercise].  This article seemed to confirm what I had long believed.  I've also made several posts about forced cycling.

Some of the other posts I’ve made:  I wrote about medication adjustments here and here and in this post and in this post.  I wrote about support I've had from  my employer,  and thoughts on Parkinson's and driving.  I've participated in a ritigotine patch medical study, and one for acupuncture.

One of the reasons I’m such a fan of exercise is that, before developing Parkinson’s, I was a runner for forty years.  One of my heroes is John Ball.  John was diagnosed with Parkinson's 25 years ago, and still runs marathons. I highly recommend his book Living Well, Running Hard: Lessons Learned from Living with Parkinson's.