Here is my talk given to the 2010 Hope Conference in Seattle. This version is slightly adapted for print.
Home-made Hope: How to thrive now with Parkinson’s Disease
Eight years ago when I was diagnosed, I was told a couple of hopeful things. The first was that it was a good time to have Parkinson’s Disease. The second was that within 10 years we would have a cure. I still believe the first. But I do not wait any longer for the grand announcement that the cure is here. Have I given up hope? Not at all. But time is too short and too precious to wait for a cure. A cure that I now believe will arrive like our disease, slowly, stealthily, and incrementally.
I can’t let my quality of life depend on a chance that down the road someone somewhere will find my salvation in the bottom of a test tube. That will come some day, and we shouldn’t quit trying to make it happen. But that is something that I have little influence on. So I make hope myself.
What is hope? There are a surprising number of viewpoints. Take Emily Dickinson
Hope is the thing with feathers? That’s a little weird, but it is poetic!
And now, here with an differing view, German Philosopher Friedrich Nietzsche
Hmmmm, probably more appropriate for the “No Hope” conference.
How about this, from former Czech President and playwright, Vaclav Havel
”Hope... is...an ability to work for something because it is good, not just because it stands a chance to succeed”.
For Havel, hope isn’t just a mental state, it’s a capacity for action, intertwined with doing. Hope isn't just something you have, it's something you do. This is the area I want to explore.
Here is what I know about hope. Hope is what gets us out of bed in the morning. Without it, why would you bother? We need hope for a good quality of life every day when we get up, not in 10 years or 2 years or two months. Smart and resourceful and dedicated as they are this is not something the people in lab coats can do for us. When it comes to hope and Parkinson’s Disease, It’s up to each of us to make our own.
So how to go about that?
We can start with the idea that Parkinson’s Disease is transformitive, Let's take a trip back in time to that glowing red-letter day when you got your diagnosis. Remember what it felt like?
Diagnosis is devastating to the person getting the verdict. Obviously, from that moment forward life is going to be different. Again. Parkinson's is transformitive. But here’s the key: the transformation depends on more than the course of a mere disease. A big question is how will you handle it? Put aside the proximity or distance of a cure and the unfairness of it all. There is hope for you that you alone can create.
I was 43 when diagnosed. I wanted life to stay the same. I wanted to go on in my rare and wonderful cartooning career. I wanted to enjoy all the physical pleasures that I had come to think of as a right. More than that, I wanted to continue to be the husband and father I worked every day to be for my wife and son.
At the time, that seemed impossible. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Not that people don't try. Following my diagnosis, I was visited by a friend who predicted a difficult journey ahead that would be at least partially redeemed by what I learned along the way. I appreciated these words of comfort as a well-meaning emotional placebo. A sugar pill offered to fend off painful reality.
But my friend was far more right than I could have guessed. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're open to new paths to meaning, you'll be surprised at what you can salvage of life. And at what you can build. Like hope.
Over eight years experience, I found list of ingredients for home-made hope. Here are some that are critical. As Havel suggested, these are all activities, because hope is a verb.
Ingredient #1 Learn to adapt
You don't have the option to not change, you do have the option to adapt. And in adapting, you can open up new worlds. (By the way, that’s the kind of statement that sounded like B.S. before it applied to my life. But I have experienced it, and I know different now.)
The first area of my life PD tried to take charge of was my job as editorial cartoonist for the Anchorage Daily News. I began to feel the pain of repetitive strains that were compounded by the stiffness of Parkinson's. The struggle to continue drawing went on for years until finally, my bright and resourceful doctor of Physical Medicine told me he was out of ideas to keep me cartooning.
This was a double blow, first because drawing has been a large part of my self identity since I was eight. And second, it was my living. I wasn't ready to give it up to Parkinson's Disease. Fortunately, I knew something he didn’t.
I knew that there were electronic drawing pads that would enable me to approximate the correct posture of a typist while I was drawing. Using the pad, I could mimic that correct ergonomic practice, as opposed to my usual drawing posture.
When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that it would work. And so far, it does.
And here is where my effort to cope led me to a new world of artistic possibility, although the forward leap began with a few steps back. Once I jumped from pen and ink to the computer, I set about trying to recreate my old look with the electronic pad and stylus.
Mastering Photoshop, the program that I use to draw on the screen was the first step. And that first step was a lulu. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.
Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.
When I arrived at that lofty peak, that desperately sought grail, that ultimate moment dearly bought with toil and frustration, that apex of mastery when I finally was able to reproduce my old style, I was rewarded with a moment of clarity. It hit me that...
It hit me that recreating my old look was a stupid idea.
Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree? That's when I decided it was time I joined the 21st Century.
Since then I have been on a full-scale creative bender, exploiting the graphic vocabulary the computer makes possible.To make along story short, I went from simple black and white cartoons which I had done for decades, to animated videos with full color sound and action.
In adapting to PD's attempt to hem me in, I was forced to remake myself artistically. Doing that stimulated a period of creativity that was as unanticipated as it was exhilarating.
Ingredient 2 EXERCISE
I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to progression of a creeping paralysis of voluntary movement. I faced loss of the ability to walk, to speak, to draw. A disease treated with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told to expect.
The last thing I expected was the Spandex Angel. As I walked out of my doctor's office following my preliminary diagnosis, I had an eerie experience, almost a vision that I have come to think of as the visitation of the Spandex angel. The angel appeared before me, resplendent in garments of finest Spandex, vibrant with hues of a brightness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me with a great urgency, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.
As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts. Rather than rehash his talk, let me just say exercise is a proven mood elevator. That's significant for those of us who have PD, which is accompanied by depression in roughly half the population that has Parkinson‘s. And exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. Finally I’d like to steal a point from something Dr. David Greely said during a recent telehealth presentation. It was a point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network, because you will send the message that you are trying. It doesn't have to be dramatic. Start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.
But take it from me, or take it from Dr. Alberts, or take it from Mississippi Fred MacDowell, "YOU GOT TO MOVE!"
Ingredient #3 Beware the Ogre who says “No!”
Some say there is a “Parkinson’s personality” and one of the traits of this personality is inflexibility, a reluctance to try new things or vary routines. I found myself playing this role with such dogged predictability that I even came up with a name for this unwelcome alter-ego I called myself The Ogre Who Says “No” Who was this Ogre? He was the one who could be counted on to find an excuse to not do anything out of the routine. He had a million objections, many of them, seductively reasonable- we needed to save money, or we didn’t have time, or we needed to simplify. But this was just a cover-up for his true agenda: a walk down the path of least resistance to hastened decay.
The Ogre is a serial buzz killer. It’s important to find ways to say “Yes” for your sake and for the sake of those who care for you. Don’t let Parkinson’s Disease trick you into becoming your own jailer. I am constantly surprised to discover that I can do more than I think I can.
Ingredient #4 Put pride in its place
Yes, pride is important, but it is a two-edged sword. It can keep us functioning when we seem to have no other resources. But it can cut us off from help. Pride can especially become a stumbling block for men in dealing with depression. We men don’t like to admit that we are not in control of our emotions and will try to tough it out. To tell the truth when depression was stalking me I even got a cheap thrill out of it. I had the sense that I was capable of great depth of feeling ordinary people couldn’t know. I was a great tormented soul like some Beethoven of Parkinson’s Disease. Why I thought this was a good idea escapes me now. Clearly was time to get a grip, talk to the doc and get some help. The goal is to tame the Parkinson’s beast. Rather than taking pride in your toughness, take pride in coping as successfully as you can.
Ingredient #5 Inform Yourself
Every fact that you can master about this disease is another tool that you can use to cope. And like the rest of your body, your brain needs exercise. Why not give it a great big dose of the exercise it needs by gathering and mastering facts about Parkinson’s? Intellectual challenge is one way to help keep your brain functioning as well as it can. And let me put in a word for the value of learning for its own sake. One of the pleasures of my post- diagnosis life has been exploring the mystery and wonder of the brain. It’s a complex and fascinating part of ourselves that is seeing exciting new inquiries and insights.
Ingredient #6 Get involved with your local support group.
Everyone hungers for information after diagnosis. A thousand urgent questions crowd forward in a tumult that demands answers. If you’re looking for experts on coping with Parkinson’s Disease, someone with not only the time to help you, but the hard-earned experience with dealing with this beast day-to-day, year to year, participate in a support group. Each member is an authority on PD, through years of intimate contact. Or do you just need a sympathetic ear? A support group is your ticket there, too. And don’t overlook what for me was a significant unexpected benefit: Seeing people who cope with unimaginable tenacity and grace with what had seemed to me the impossible. People who had been doing this impossible task for years and years.
Also remember that you are one of the experts, you have knowledge that can help someone else. I avoided my support group for a long time, afraid of meeting the person I call THE SCARY OLD GUY WITH PARKINSON’S (SOGWP) This wasn’t a particular person, it was my idea of my future personified in anyone with symptoms of advanced Parkinson’s Disease. Bent, shaky and drooling.
Eventually a support group meeting came up that was so compelling, I went in spite of my fear. It was crowded, and I ended up with nowhere to sit but right next to a full-blown SOGWP The guy I had been avoiding did not avoid me. To my excruciating discomfort He leaned over and said something unintelligible in a soft voice. I said “Pardon?” He leaned over again, and repeated himself, just as unintelligibly as the first time. I asked him again to repeat himself. This went on until his wife kindly intervened, telling me “He said don’t wait to get speech therapy”.
Even as far along as he was, he still made the effort to help someone else. Sharing your strength can give you an amazing boost that a friend calls a “Helper’s High”. This is not mere goody-two-shoes theory. I have tested it myself and am surprised at how well it works
Ingredient #7 Care for your caregiver
If you are lucky enough to have someone who will stay by you in the face of all that may come, then you are lucky beyond all measure. Take care of that person. You are a big job, and you are worth it. But from time to time your partner will need a break. Understand this and make it easy for them. And anything you can do to help around the house will be deeply appreciated, especially by someone aware of what you must work through to get something done.
Ingredient #8 keep your sense of humor
This is what your sense of humor is for. It’s for coping with pain, for keeping things in scale. PD tries to take so many things from us, don’t let it take laughter too. There's nothing funny about someone with no problems. Unless you mean "funny strange". But Parkinson's? Parkinson’s is a side-splitting, non-stop laugh-riot! The slapstick alone around my house is at least Three Stooges quality, and I’m aiming now for Buster Keaton. And did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?
Ingredient #9 Hang on, help is on the way!
Nobody has all the answers, and everybody has their own particular type of PD. But I’ll bet that most of what works for me will work for you. That I work at all is testament to the dedication of those people with Parkinson’s, caregivers, doctors and researchers that have been at this since long before my first tremor appeared.
The techniques medications and surgery that help keep me going are the fruits of the labor of many smart, persistent amazingly skilled people who for some reason have focused their lives on making our lives better. Bit by bit they are cracking the Parkinson’s code. The day will surely come when people no longer suffer the pain and indignity of this cruel and cunning disorder. With all that they have already done for us, combined with what we can do for ourselves and others, we have every reason to believe daily in waking to better tomorrows, every reason to hope.