By John Schappi
Over the last few months, I've become convinced that my "Parkinson's honeymoon" is coming to an end.
Correction: the honeymoon has ended.
A Parkinson's primer
First, a quick refresher on Parkinson's disease (PD), the progressive degenerative neurological disease that affects more than 1.5 million Americans.
PD is characterized by slow movement, walking difficulties, postural instability, and rigidity or stiffness in the arms, legs, and/or neck. The most common red flag—the symptom the general public most often associates with PD—is the resting hand tremor.
A sizable minority of people with Parkinson's (PWPs) don't have that tremor. I'm included in that group. For us, postural and gait difficulties are the biggest problems.
Secondary symptoms may include depression, confusion, difficulty speaking and/or swallowing, and facial "masking"—a PD indicator in which facial muscles become immobilized, creating a blank expression. This masking, particularly when it's combined with the soft voice symptom, can create real communication problems for PWPs, since others often misinterpret the symptom as disinterest or depression.
The drug levodopa—which the brain converts to dopamine—is the standard treatment for PD. Dopamine is a brain chemical used by nerve cells to control muscle movement. With Parkinson's, those dopamine-producing brain cells slowly die.
Unfortunately, PWPs on extended levodopa treatment often end up with dyskinesia, the uncontrollable "thrashing about" we see in Michael J. Fox, Muhammad Ali and other public figures with PD. People often assume that Parkinson's creates dyskinesia, when it's really a serious side effect of the medication.
The "Parkinson's honeymoon"
Newly diagnosed PWPs typically experience a "honeymoon" of three to five years, during which time the side effects of the disease aren't too disabling. Mine lasted over five years, so I shouldn't complain.
I was diagnosed in September 2010, when I was 80, but I should have been diagnosed much earlier. I didn't have the tremor, which delayed the diagnosis. But, years before my diagnosis, I was experiencing the early warning signs of PD—loss of sense of smell (four to five years before diagnosis), restricted swing in my right arm when walking (three to four years before) and balance problems (two to three years before). I've arbitrarily set January 1, 2009 as the date for the onset of my Parkinson's. A good diagnostician would have flagged it much earlier.
With almost any disease—and especially with PD—the progression varies greatly from person to person, and it's seldom clear why one patient's progress is slower or faster than another's. I attribute my relatively long honeymoon primarily to my taking an active role in managing my disease; both my neurologist and my physical therapist view me as an "outlier" in this regard.
Signs the honeymoon has ended
With an extended honeymoon, you start to think the good times will roll on forever. That's where I was coming from, which explains my initial reluctance to acknowledge the clear signs that the honeymoon was ending.
But, the signs began to add up, forcing me to recognize the new reality. Here are some of those signs:
Shortening the medication intervals: The standard prescription of levodopa is a 100mg pill, taken at various intervals during the day. I started with a prescription for three pills taken at six-hour intervals during my waking hours, with an extended release (double dosage) pill at bedtime—totaling 500mg each day. When I began staying up for my quiet hour around 4:00 am, I took my first 100mg pill at that time and reduced my bedtime dose from 200mg to 100mg—totaling 400mg. That's where I was—400mg—for most of the honeymoon. It was easy at first to forget pill times, since I wasn't really feeling negative effects if I went longer than the usual six-hour interval. But, for the past several months, I've experienced clear "on" and "off" periods with most doses of levodopa. During the "off" periods now, the drug's remedial effects really wear off and the PD symptoms become more disabling. As a result, I've reduced the interval between pills, from six hours to five or less.
Falls: During the honeymoon, I had a few falls, but they were similar to the stumbles I've always had. I had my first real "Parkinson's fall" last month, when I was in Buenos Aires. I spotted a restaurant I was looking for on the other side of the street. I turned too quickly to cross the street and—because of my PD forward-leaning posture—lost my balance, lurched forward, and ended up flat on my face at the entrance to the restaurant. This unfortunate performance confirmed what I'd experienced throughout the trip: my sense of balance has deteriorated significantly.
Housemates urge me to stop driving: I sensed, but refused to acknowledge, that I was walking more slowly and stiffly, and that I was more fatigued. The wake-up call came when housemates Nimesh and Bhawana suggested I consider giving up driving. A few months earlier—in a survey I'd given my two families—Nimesh and Bhawana were the only two respondents who indicated they weren't concerned about my driving. But, now they were. What had changed? They explained that at the time of the survey they hadn't seen any real decline in my driving skills. They'd been impressed that I was reducing my driving. But, since that survey, they've witnessed a decline in my physical condition and stamina. They worry now about my response time when unexpected events occur on the road. They observe what's going on with me more closely and more frequently than anyone else. Their "tough love"—openly expressing their concerns—broke through my denial.
Yep. The honeymoon is over. Now what?