By John Schappi
Into the Parkinson’s disease homestretch, and prompted in part by the recent suicide of fellow Parkinsonian Robin Williams, I spent time this past week thinking about—and planning—my final exit.
This disease is idiosyncratic; I could live independently for several more years, or I could take a fatal fall tomorrow.
Both my neurologist and my physical therapist recently reported seeing little decline in my physical condition. But I've seen signs that I'm on the verge of dyskinesia, the involuntary movements that tend to occur when the levodopa medication starts to wear off. In addition, my response to this medication has become erratic.
Yesterday, my neurologist suggested I get back on Azilect, the costly medication that can smooth out and extend the performance of the levodopa medication. There’s something else, too: I just saw reports that a particular variety of curcumin—the active ingredient in the Indian curry spice turmeric—is especially effective here. I’ll report more on this later.
So…that's my life on the Parkinson's rollercoaster. Up and down and round and round we go.
Parkinson's disease progression
Parkinson's symptoms progress idiosyncratically—for some people, fast; for others, slowly. People diagnosed early in life typically see a slower progression. Leon Paparella—my Parkinson's support group leader—was diagnosed 27 years ago. Today, at 69, he continues to function well, and has outlived many group members who received their diagnoses at age 60 or beyond…as most PWPs (people with Parkinson’s) do.
To give Parkinson’s patients an idea about the progress of their disease, many doctors use the Hoehn and Yahr scale, which describes the stages this way:
Stage one: Parkinson's disease symptoms affect only one side of the body.
Stage two: Symptoms begin affecting both sides of the body, but balance is still intact.
Stage three: Parkinson's disease symptoms are mild to moderate and balance is impaired, but the individual can still function independently.
Stage four: People at this stage are severely disabled, but they can still walk or stand without assistance.
Stage five: The patient becomes wheelchair-bound or bedridden, unless someone is helping him.
I'd place myself at stage three now. While there are signs I may be heading for stage four, there's no way to know the timetable.
I could probably deal with stage four. But as of today, I'd like to exit before I move into stage five.
But how to handle the exit? I'm such a klutz; I fear I'd botch any do-it-yourself process—pills; jumping off a cliff, bridge or building; hanging by the neck; etc.—and wind up in worse shape than before. Guns are too messy and I don't like them.
But here are two options I feel are worth exploring:
Option one: Assisted suicide in Switzerland
All jurisdictions that now permit assisted suicide—except Switzerland—have strict residency requirements. In addition, the three U.S. states that permit it (Oregon, Vermont and Washington) require two physicians to certify that the patient has a terminal illness that is expected to result in death within six months. Those states also require that the patient be capable of making this decision himself.
But the Swiss law is loosely phrased. It doesn't even mandate a doctor's involvement, or any certification of a terminal medical condition.
Most of these suicides take place in Zurich, my father's birthplace. So, in a sense, I'd be coming home if I chose this route. But dying thousands of miles away from family and friends would be a drawback.
The current issue of the “Journal of Medical Ethics” describes a study on the Swiss phenomenon of "suicide tourism." More than 600 people traveled to Switzerland between 2008 and 2012 to kill themselves.
The two main reasons for seeking suicide were neurological diseases like Parkinson's (47 percent) and cancer (37 percent).
Option two: Dehydration and starvation
John Rehm, husband of NPR host Diane Rehm, died June 23, 2014 by dehydration. His Parkinson's disease had become unbearable for him. Here's how Rehm described her husband's final days:
“He just kept getting weaker. We called in the doctor and John said to him, 'I am ready today.' He said 'I can no longer use my legs. I can no longer use my arms. I can no longer feed myself.' And knowing with Parkinson's it is going to get worse rather than better, he said 'I want to die.' He asked the doctor for his help.”
The answer they got surprised and disappointed them. The doctor said "I cannot do that legally, morally, or ethically. I don't disagree with your wish that you could die with the help of a physician but I cannot do it in the state of Maryland."
John Rehm had to die by deliberate dehydration. It took nine days.
It's not an easy way to die. It may take a few days—or a few weeks—to succumb.
I initially dismissed this option, figuring I'd never summon the willpower to carry out the no-food, no-drink regimen for an extended time. But I had lunch today with good friends who had gone through this process with a friend of theirs. That friend had suffered from kidney failure and didn't want to undergo dialysis. He opted for dehydration instead.
He checked into a local hospice and signed a form confirming that he wanted no food or liquid. He was sedated and in a semi-coma for most of the time—over two weeks—that it took him to die. He never showed signs of pain or even discomfort.
This scenario comes pretty close to assisted suicide in my book. Wouldn't it be kinder and better to just give him a pill?
Enough. Hopefully, it will be a few years before I'm faced with this decision. Who knows—maybe I'll be like a majority of the people who sign up for assisted suicide and never go through with it. Presumably, they feel empowered knowing they are in control of their destiny, which then makes the difficult days ahead much more bearable.