Hello, Darkness

This is where I must return at times. To paraphrase the late Maurice Sendak, it's where the dark things are. At the heart of it, I am afraid, mostly these days. These fears I cannot share. What if all this effort really isn't working? I exercise every day, I have specifically added T'ai Chi and riding my exercise bike based upon research I have read about. I am gradually accepting the fact that low-carb diets are no longer a suitable means to control my weight. Copious amounts of wine, a favorite means to lift the spirits, even to assuage boredom, are no longer compatible with the assorted meds I take. I take two vitamin supplements. I regularly play word games and do math in my head (mostly calculating expenses compared to income in retirement).

All these efforts and I still have mostly lost the ability to use a pen or pencil; I resort to eating with the opposite hand. I find myself favoring my right leg. I hold my left arm curled up in front of me when I am tired. I catch myself walking stooped at the waist or shoulders or both. Sexual activity has become suspenseful, at least. I don't sleep like I used to. I even catch a little drool at the corners of my mouth on occasion. Are all these things acceleration in the onset of my PD? It is "a chronic, degenerative condition," isn't it?

Depression is my oldest friend. I just know I will be losing all independence and will be staggering around behind a walker, drooling on myself or worse. Ever the pragmatist, I ask myself "What to do?" Lately I have been wallowing in it. What fun!

In a more constructive direction, I am trying to become involved in the Parkinson's movement—on the political front speaking out for more funding of research (a real conflict for me, being opposed to government boondoggles, but a more compatible one for me is removal of restrictions on stem cell research). I am also working to promote participation in clinical trials and genetic research. All of this is hard to do without joining a local support group. From a distance, that all looks like more wallowing to me, besides, all those people are way farther along in the degenerating stuff, aren't they?

The Dalai Lama says that death is a great teacher, from it we learn about suffering (which is regarded as an inadequate translation of the word in Pali). Death teaches us about attachment, ignorance and anger in the face of impermanence. I can see Parkinson's that way, I think. At least I'm trying to, here in the dark.

THE FULL CATASTROPHE

In the novel, Zorba the Greek, Zorba is asked if he was ever married. He says, "Am I not a man, and is not a man stupid? So, I married. I had a wife, children, a house, the full catastrophe." In today's stressful world, life can be "the full catastrophe," at times. Did Zorba mean married life is a catastrophe? Or was it merely a slice of his life, a truly "full catastrophe."

To me, Zorba and his response personify a remarkable appreciation for the richness of life and its dilemmas, sorrows, tragedies and ironies. Zorba's response was to dance in the gale of the "full catastrophe," to celebrate life, to laugh with it and to laugh at himself, even in the face of personal failure and defeat.

So how can anyone cope with "the full catastrophe?" First by just being in the present moment, which is all we really have. We often spend our time reliving the past or "pre-living" the future. We remember a past that is gone forever, and worry about a future that might never happen, while the present slowly slips away. The term for just being in the present moment is mindfulness, and it takes a lot of practice. In the present moment, the full catastrophe in our past disappears, and the future catastrophe doesn't arise.

Do you sometimes see your life as "the full catastrophe?" I do… now. Like Zorba, I am a man, I married. I have a wife, children, and a house—but don't get the wrong idea, that didn't convince me. No, what made me a believer happened two years ago this month. The neurologist said simply "Jim, you have Parkinson's disease."

He went on to explain that

• Parkinson's is a chronic and progressive movement disorder. Medical science knows neither the cause nor the cure.
  
• The most common symptoms are tremors of the hand and leg, slowness of movement, muscle rigidity and in some cases, impaired balance. There can also be depression, problems with emotional control and cognition in some patients, as well as sleep disorders.
  
• The neurons that normally produce the neurotransmitter dopamine, which controls unconscious motor activity, begin to malfunction and die off. As some point, your brain stops producing dopamine, which controls much of your unconscious motor function.
  

He probably went on explaining, but most of that didn't register… I was lost there for several moments. I later did a little of my own research and learned, oddly enough, PD does not have the same effect on conscious motor activity, and that's significant for those of us living with Parkinson's.

Another doctor I consulted two years ago said to me "Jim, the most important thing you can do with this diagnosis is to exercise an hour a day."
I said "Doctor, that's a pretty tall order for me; thirty minutes, twice week is a good week for me these days." In the nearly 2 years since that conversation, I have exercised more than I did in the previous ten. Consequently, I experience virtually no back or joint pain, can do more pushups than I ever could, I can bend and reach farther, and move better than I can remember. I go to yoga class. Did you know the Sanskrit word for pose is "-asana?" In yoga I am learning what my teacher and I call "old-guy-asana," each day you bend and stretch just a bit further than the old guy you were yesterday. All this new muscle activity is building up that inventory of conscious movement, unaffected by Parkinson's DIsease.

Often, when we are not practicing mindfulness, we are relying on unconscious movement. When we multi-task, we can only have one task at the top of mind. The rest is being handled unconsciously. Think about the last time you drove home only to arrive at your driveway having no recollection of actually driving. You were too preoccupied with other things, and your unconscious took over and took you home. So, the second part of practicing mindfulness I have to re-learn is to do just one thing at a time, mindfully.

It turns out mindfulness is a highly effective way to treat stress, some intractable pain, Parkinson's and other chronic illness. Dr. Jon Kabat-Zinn started work in this area with his pioneering Stress Reduction and Relaxation Program at the UMass Medical School more than twenty-five years ago. There he and his colleagues have taught thousands of people with chronic illnesses, intractable pain and more to live more consciously and mindfully, helping them deal with their own version of the full catastrophe with their eight week program.

A few weeks ago, I started Dr. Kabat-Zinn's program myself, and I feel the difference. Over the years, I have read a shelf full of books on mindfulness meditation, and off and on tried it. But, until now, I never had the motivation to stay with it. But that's changing, just like my attitude toward fitness. I am trying, in Dr. Kabat-Zinn's words, to become "an island of being in a sea of doing"

It's all a part of the "full catastrophe" that my life has become, and I wouldn't trade these moments for anything. You see, to me the "full catastrophe" captures something positive about being a human. We have a way of taking what is most difficult in life and finding within it the room to grow in strength and in practical wisdom.

PD with Benefits

Yes, it is sort of a takeoff on "friends with benefits," but only in a limited kind of, sort of way. I keep seeing a recurring theme, these days. Along with PD, it seems I am getting a few unexpected benefits. The first is the habit of exercise. In the nearly 2 years since my diagnosis, I have exercised more than in the previous five. I can bend farther, do more pushups (a dubious benefit), reach more, move better, and experience virtually no back or joint pain. I look forward to yoga class, enjoy tracking my exercise, and especially love all that I learn in personal training sessions. All this because the first neurologist said, "the most important thing you can do for your future is to exercise—an hour a day." I haven't managed an hour every day, but I get close to averaging that much. I know for certain without this motivation, I wouldn't be doing all this, but for PD.

Another unexpected benefit showed up recently. Since PD affects certain areas of the basal ganglia, where much of our unconscious motor activity is stored and from which it originates, trips and falls while walking and thinking of something else, dropping of objects you normally don't have to think about carrying, seem to occur more frequently in a way that undermines some of your confidence. In fact, multi-tasking in general seems to rely on continuing some activities unconsciously, while adding to the top of mind the latest task. As a result, when you look at something else while you walk, you may stumble a bit. Or, while you hold a pen and reach for a book, the pen might slip from your hand. But, only part of the basal ganglia is affected, and the part that controls conscious movement is not. Thus, mono-tasking, or mindfulness of what you are doing here in the present moment allows you to function flawlessly (at least about as flawlessly as you did in the past). So, mindfulness training, which I have dabbled in for most of my adult life, is my next big challenge. In my usual way, I have started by finding a book. I read up on this one and plan to go to the bookstore and sample it today. In the past, my mindfulness efforts have been like my former exercise efforts—moving in fits and starts, and then fizzling altogether. I might just turn the corner on this one yet, thanks to my PD.

The very latest, which I picked up on just hours ago, I was listening to an interview with a doctor-writer discussing a recent essay. She observed that physicians, or anyone else for that matter, cannot keep all their emotions inside and stay healthy. What you keep trapped inside will come out in some set of symptoms like depression, stress disorders, etc. Enter the unexplained loss of emotional control I experience more and more. A simple story can bring me to tears, or I will find myself getting angry about the smallest thing. So, the good thing is, I am not holding those emotions in, I guess. This one is still a work in progress (like me), but if I can round the edges off some of the emotions, I will be more direct and will not be holding out on people. Being more open is being more human and having genuine relationships, isn't it? Hmmm…