My Final Exit


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.

Washington, DC, resident John Schappi blogs about aging, exercise, diet, pills, supplements, and his life with Parkinson’s disease and prostate cancer. Once upon a time, he was addicted to nicotine, alcohol and sex. These days, his passions include gardening, playing bridge, meditating, going to the theater and traveling.

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It is good to know that someone is actually "thinking". On the Today Show this morning the Robin Williams autopsy was discussed and they said another extenuating circumstance was that Robin Williams had Lewy Body Dementia. They interviewed a friend who had known Robin Williams since 1979 and had seen Robin Williams the last month of his life. He said that Robin Williams had lost weight and was frail and scattered and closed the interview with a statement to the effect that "something was definitely wrong". The story closed with “it is better to get help for your condition rather than go through with suicide”. I am so angry and tired of the “pop advice” offered by an unthinking media to those facing a disease like dementia, or Alzheimer’s, or Parkinson’s. This story brought back all of the sinking, desperate feelings my family and my Mother faced as we groped for help during the final stages of her life. Forget growing a beard for Ebola, how about growing a beard for compassionate care of the elderly and terminal?

I do believe the media and medicine has a responsibility to encourage people to continue living. I do believe that they should encourage people to get help. There are many occasions where suicide is a stupid answer to a short-term circumstance that looms large but in perspective, if one continues to live, is really nothing.

My Mother died in July at 81. She was miserable and depressed because my father died the previous July and she “could not see a damned thing and could not read or do crossword puzzles”, she was dizzy “all the time”, she had to go to the bathroom “all the time”. She was miserable and was left with only the TV and her children but “no good times ever again.” We all thought that it was a result of her diagnosed dementia, participating in Hospice care with my father, losing my father, moving to assisted living, and poor health. Huge life challenges and changes for anyone, much less a person with dementia. Doctors and pharmaceuticals only offered limited palliative help and many emergency room visits but no healing. I want to emphasize that my mother had extensive medical care and neurological workup for many years. Please, no advice on the miracle of new medications from any well intentioned readers, we sought help and ultimately, the only thing that really made my Mother happier was her family, eating good food, Starbucks Caramel Macchiato, and Zoloft.

The Hospital helped my mother die of dehydration during her “recovery” from her final fall. The Hospital took away almost all of the few remaining things that made her happy, food and Starbucks Caramel Macchiato (Zoloft can only do so much) because she failed a swallow test. The medical profession gave my Mother a legitimate, foolproof, easy, way to die without “committing suicide”. Medical assistance and rehabilitation stopped the eating and drinking by imposing lifesaving precautions that took most of the remaining joy from Mother’s life. As far as legalities were concerned, the hospital and rehabilitation was blameless. Ethically, you decide.

Finally, my point. We need to consider a legitimate way to allow people to die with dignity (let’s not confuse suicide with allowing people to die) without forcing people that are facing Robin William’s circumstances to hang themselves. Robin Williams had been working through depression for what appeared to be his entire life and was then faced with a disease that was going to make his depression worse, plus take his movement, mind, memories, and skills. His disease appeared more advanced than previously made public. I am sure he could afford and had the most excellent medical care. With that, much like my mother, he would be faced with an army of doctors pushing any pharmaceutical solution that might work, dealing with the side effects in the emergency room, recovering, and facing a new barrage of pharmaceuticals.

Thank you for actually discussing the issue of Parkinson’s and dementia and the end of life without cloaking it in senseless advice to mindlessly seek help. Medical help reaches a point of diminishing returns. I understand that the hands of medical professionals are tied because of laws and lawsuits. However, many medical professionals need to re-focus on common sense, compassion, and quality of life for anyone stricken with a rapidly advancing, debilitating disease. I only hope that I can find one of these medical professionals when my time comes.
I hope you are correct.
Dear John,

My heart goes out to you, so perhaps this information - if you haven't seen it - will be of help to you. My Mother went through dehydration and starvation because I didn't know any more to do for her 17 years ago. I would give anything to have had the knowledge contained in the "Peaceful Pill e-handbook" which you can find online. When the time comes, I now have what I need to exit in an easy and painless way before its too late, thanks to the instruction in the book and their forum. I was “present” by phone when this method was used by three different friends, so I know it’s reliable and peaceful. I just wish that Robin had done more research and found this better way. Please feel free to write me with any questions, if you would like:

All the best,