By John Schappi
As you might guess from the football-themed title above, I’m writing this post on Sunday afternoon. The Redskins are losing yet another game, so I turned off the TV and turned on my computer to work on the blog.
For the first time since I was diagnosed with Parkinson’s disease over five years ago, I’m dealing with a serious health issue. It has two separate parts:
Several years ago, I began experiencing sudden drops in blood pressure (BP) that put me in danger of fainting and falling.
At first, the few incidents occurred when I was out and about in Washington’s midday heat and humidity. But this year, these episodes became more frequent, happening without warning at any time of day. My doctors seemed mystified. My research indicated the problem arose from something called neurogenic orthostatic hypotension (NOH), a relatively rare condition that occurs only with patients who have Parkinson’s or similar diseases. Lucky me.
At the same time, I’ve been experiencing occasional BP spikes which have pushed the upper (systolic) number as high as 200—stroke territory.
Unlike the random BP drops associated with NOH, the spikes occur only in the “off periods,” when one levodopa pill—the standard Parkinson’s treatment—loses its effectiveness and before the next pill kicks in. It didn’t help that my former neurologist had prescribed two pills every three hours, creating eight possible "off" periods each day.
Time to draft some new players
On any day, I might experience a BP drop with a systolic reading below 80, and later a spike above 200. Needless to say, I am not happy with this scary situation...or with the lack of progress by my doctors to fix it.
There have been two professionals involved: my neurologist and a nephrologist (kidney specialist) who is regarded as a BP expert. They did not collaborate and had little communication with each other. Not an ideal situation.
I've had other reasons, too, for establishing a new primary healthcare team. After a careful process, it's now in place. I’m happy with my choices, and I'm eager to begin working with these new docs.
My new primary care team
[SPORTS BULLETIN: The Redskins just lost to the Colts 49 to 27. As a longtime Redskins fan, I’m used to disappointments like this.]
As with football, a healthcare team needs a good quarterback. In the past, I’ve followed standard practice, giving that job to a general practice internist. This time, I decided to appoint a geriatrician as my primary care doctor.
My new quarterback—the geriatrician—is affiliated with the George Washington University Hospital here is Washington, DC and recommended a neurologist, also with a GWU Hospital connection.
This neurologist won me over during our initial interview when she told me we'd never finish if I kept babbling away on tangential matters. “Just answer the questions,” she said. I have a special fondness for bright, outspoken, feisty women. I married one and fathered another.
So...that's my new team. It's an arrangement that makes great sense to me: a GP geriatrician and a neurologist. I'm delighted and optimistic.
At times, of course, I'll see other specialists. For example, I meet twice a year with a urologist who monitors my prostate cancer, which has been growing very slowly. Once a year, I'll see my dermatologist, who looks for signs of recurring skin cancer. I have the names and phone numbers of many other specialists, should the need arise.
One more key position on my team
I've found a highly recommended therapist with a specialty in end-of-life issues. Why add this position to the team? Just recently, I've shifted my focus from fighting Parkinson's to making the most of the time I have left.
I'll meet with her later this week.
So, what's the outlook for my new team in 2015? I'd say "very promising" (unlike my assessment for the Redskins).