November 11, 2014

Then: Fight Parkinson's. Now: Create the Best-Possible Life in my Final Years.

I’m 85 years old. Five years ago, I was diagnosed with Parkinson’s disease. I’m certain the diagnosis would have come at least three years earlier if I’d also exhibited the tremor usually associated with PD. Instead, my issues have involved gait and balance, symptoms that make PD harder to detect.

I just checked the Social Security Administration’s life expectancy table. An average male my age can expect to live another six years. With my Parkinson’s and prostate cancer, I don’t expect to see 2020. But who knows?

Age 90 to me is like 75 to Dr. Ezekiel Emanuel. He’s the guy who stirred up lots of controversy recently with his plan to reject medical efforts that would keep him alive beyond age 75. His reason? He thinks the quality of life after that age is simply too poor.

Living beyond 90 holds little interest for me, for similar reasons.

Two of my pals have mothers -- 96 and 97 – who still live independently and happily in their own homes. But they're the exception. So are the people 90+ who are swimming the English Channel or climbing Mt. Everest. We enjoy reading their special stories. But of the two million Americans 90 and older, too many are sitting in wheelchairs watching TV… the default scenario for “the super old.”

I’ve always told my doctors that it’s quality – not length – of life that matters to me. Over these last five years, I’ve focused on slowing the progression of my PD and adopting other health-enhancing measures. Now, I’ve decided to shift my principal focus to making my final years as rewarding, comfortable, and enjoyable as possible.

For example, I’m switching from my standard-issue general practice internist (who has concentrated exclusively on each of my ailments du jour) to a highly regarded  geriatrician who deals with end-of-life issues. I’m also looking for a therapist with experience working with people in their final years.

I’ve heard from friends who suspect I’m depressed. Why else would I be talking about my approaching death? We just don’t do that in our culture.

Let’s face it: death is just the last significant event in life. We certainly don’t hesitate talking about the first – birth. There’s no getting around it -- the first leads to the second. Birth is usually joyful and death may be sad, but it’s what we do with the time in between that matters.

I look forward to exploring what we can do in our last years to achieve the best possible life. I could say a lot more right now, but I’m trying to rein in my TMI (too much information) tendency.

Is that a loud sigh of relief I hear out there… even a “Hallelujah!” chorus?


Anna said...


My partner just passed away this past June 2014, at age 77, a little over 12 years since a PD diagnosis. He had a noticeable hand tremor for a few years before the PD diagnosis. Up until the fall and resulting pelvis fracture 2 months before his passing, he was still walking and even climbing stairs several times a day, but the dementia, confusion, and incontinence were rapidly increasing. I actually suspected multiple system atrophy (MSA), f.k.a. Shy-Drager, because of his unregulated, wildly fluctuating BP and apnea-like symptoms. At the very end, he took one last in-breath and just didn't breathe again. I don't think he was in pain. In fact, he seemed to have chuckled about something he had just heard just before he expired.

Kathy Muller said...

You are so right that it's the quality of life that counts. I applaud your thoughtfulness on this issue, as I have on so many issues over the years.

But you must know that if you stop with the TMI, we will worry that you aren't yourself anymore.

And whenever you leave us, we will you miss deeply.