This post began as an e-mail to a friend with a beloved relative who has Parkinson’s. It is by no means exhaustive, but I’ll bet if you follow these precepts, you will have a gentler descent into disability than if you ignore them. We are the first generation of PD patients who have most of these strategies available to lessen the force of the blows that PD directs at us, it would be a shame to ignore these tools, they are the advances in treatment all of us with Parkinson’s Disease wish for.
This is a general guide to coping with PD, based on my 20 years of experience since diagnosis. While a diagnosis of Parkinson's Disease can seem like world-shattering bad news, it is actually a moment of empowerment for the person with PD. The problem is now out in the light of day where you can plainly see it and begin to cope. Here are some things to be aware of.
First: intervening earlier rather than later is a key to a slower decline., Studies have shown that the sooner you are on medication, the sooner you do voice therapy, the sooner you institute a regular exercise plan, the less drastic your descent toward disability will be. The lesson here is don't wallow in denial, the sooner you act, the better your long-term outcome.
Second: deal with depression. Talk it over with your neurologist if you are depressed. (And why wouldn't you be? Your dopamine levels are unnaturally low. At any given time half the population with PD is depressed.) The doctor can prescribe many different medications that are safe and effective. I have taken Lexapro (escitalopram) for almost 20 years now with no detectable side effects. If you don't deal with depression, your ability to do anything else will be compromised and much more difficult.
Third: Exercise, exercise, exercise. What kind of exercise? The usual advice here is "Anything that you will keep up." That's great, as far as it goes, but the most compelling work done on PD and exercise is by Dr. Jay Alberts, of the Cleveland clinic. His research was done on bicycles and PD. What Dr. Alberts discovered was riding a bike with a pedal cadence between 80-90 strokes per minute for 30 minutes a session three or four times a week reduced Motor symptoms of Parkinson's Disease by a third, and the benefits lasted for a month after the patient was no longer engaging in the exercise. That is a huge dividend, especially when you spread the results across several years! An indoor, stationary bike will work well for this, although I also ride outdoors.
The other form of exercise that is getting much notice is boxing. Boxing requires speed and balance, which are obvious targets for skill-sharpening in PD. I have done the Rock Steady Boxing With Parkinson’s classes and they were helpful on two levels, the exercise itself was beneficial, and second the group was a great source of fellowship and support. I no longer live near a Rock Steady program, but if I did, I would definitely participate. Other types of exercise that have been found to be beneficial for Parkinson's include Yoga and Tai Chi.
Fourth: Learn as much as you can about the disease. You will have better care if you are not on auto-pilot, doing whatever your doctor tells you. The more you understand about the disease, the better partner you can be to your care team. And besides, the brain is fascinating territory we are just now starting to penetrate. For example, it was only recently that the glial (white) brain cells, formerly thought of as mere packing materials for the gray cells, were found to play a much larger role in many previously unknown aspects of the brain's function, or in PD’’s case, brain dysfunction. That is half the brain that was written off by researchers, essentially terra incognita now waiting to be explored.
Fifth: Don't wait to join a support group. There is nothing that can take the place of the accumulated wisdom of a group. The members will likely have encountered the same rough spots and challenges you will, and can be a rich source of information and solace. Online groups are fine, but they don't have the same gravitas as a live, in-person group.
I only check online groups occasionally, but they can be helpful resources, with the caveat that any Joe Blow can post some cockamamie notion to the group.
Sixth: Don’t prematurely give up the things you love to do because of Parkinson’s Disease. G.K. Chesterton, the British writer once pointed out “Anything worth doing is worth doing badly.” This would make a fitting mantra for people with PD. I love music, especially the guitar. PD cruelly targeted my guitar playing, sabotaging my ability to play clean and on beat. It occurred to me that I could adapt my playing and simplify my challenges by moving over to playing the mandolin, which has easier stretches and fewer different pitches to tussle with. It did mean I had to learn a new tuning, but it’s good for your brain to practice novel skills. The result was to add years to my playing in a gigging bar band, and making a unique contribution to our overall sound. Lately I have been exploring the electric guitar, which is in some ways easier to play than the acoustic.
Whew! That’s a pile of stuff to absorb. There are worse things out there than Parkinson’s Disease. As Bill Bell, co-founder of the Northwest Parkinson’s Disease Foundation says “It’s a good time to have PD.”
I always knew this day would come. What I didn't know was how I was going to cope with it. "It" being the loss of balance and resulting falls that accompany this dispiriting symptom of PD. I experienced freezing episodes since the early days of my diagnosis, where my feet seemed to stick to the floor, resulting in a mincing, hurried stride that often precedes a fall. The falls are no laughing matter, they seem to happen without warning, and can result in injuries from minor scrapes and bruises to broken bones.
I got a respite from falling when I had Deep Brain Stimulation. The operation added years to my essentially trouble-free ability to walk, run, and do a Buck and Wing. But over the last year or so, I found myself lurching around the house and falling with increasing frequency and severity. What to do?
I tried some of the earlier tricks I had found to keep myself moving. These included walking backwards, walking with your feet on two different levels using a curb to provide the difference in foot elevation, and walking pigeon-toed. These efforts, which all worked fine in my esrlier stages of PD met with limited success at best. However, there is one method that frees me up dramatically. That was the Kick and Step (See diagram above to learn how to do it.)
The Kick and Step feels like magic. And it acts like magic, too. Suddenly you are moving smoothly across the room, your stride almost completely normal. Since I have been using this anti-freezing method of locomotion, I haven't experienced one disastrous fall. Prior to this, I was falling two or three times a day. This has been a significant morale boost. The beatings have stopped. For now, anyway.
It
appears that the people at Penn State Press are convinced that "My
Degeneration" will be published in October. They say so right in their catalog, which also has a short description of the book and five of the
finest blurbs ever written. The catalog offers a few different ways to
pre-order the book, which you will be desperate to do after reading the
blurbs, but the only thing I could get to work was the one that enables
an email notification when the book is available. Watch this space for
further exciting developments as they break!
It would be a disservice to the fine writers who agreed to read a draft of the book and then had nice things to say about it to not repeat their remarks as often as I get the chance. They appear below, for your interest and with my thanks.
“Peter Dunlap-Shohl once again
brings his unique art to the table to help educate, illustrate, and
demonstrate life, hope, and strength on his journey with Parkinson’s.
Creative and insightful, this book reflects all of Pete’s greatest
qualities, including his constant work to help and educate all those in
the PD community, patients and care partners alike.” —Bill Bell, co-founder of the Northwest Parkinson’s Foundation
“Peter Dunlap-Shohl is a comic genius and a masterful
artist. The fact that he came down with early-onset Parkinson’s Disease
gave him the unlucky opportunity to chronicle this dogged and humorless
disease. His wit and artistry, his truth telling in the face of
struggle, I know, makes the struggle easier for his readers to bear.
Peter is a Rock Star Artist and Humorist. Every disease like Parkinson’s
should have someone like Peter Dunlap-Shohl, until there are no more
diseases like Parkinson’s left.” —John Straley, author of Cold Storage, Alaska
“I could have recommended Peter Dunlap-Shohl’s book because
it brings attention to a great purpose. Or because it is brave and
honest work. Or even simply to acknowledge an achievement of this
magnitude created under physical, psychological, and emotional
circumstances that most of us will never understand.
"But I'm not
endorsing Peter’s graphic novel for any of those reasons. I'm doing so
because this is a damn fine work of art, by a damn fine artist.” —Nick Galifianakis, Washington Post cartoonist
“The world made fresh by a Parkinson’s patient with a
wonderfully sensitive and cocked eye. He tells the tale of his
fast-changing reality with compassion and wicked humor, leaping from one
crazily inventive work of art to the next. Never more acute than when
examining his own mind-set, Peter Dunlap-Shohl leads us from diagnosis
and despair to the high ground where he could compose this lucid, moving
book. A miracle, in a way—and a triumph.” —Tom Kizzia, author of Pilgrim’s Wilderness: A True Story of Faith and Madness on the Alaska Frontier
More-or-less alive... from Spokane... It's yours truly, talkin' humor and Parkinson's Disease! On the teeny-tiny chance that you are interested, here is the text along with visuals from my presentation September 7 in Spokane, Wa.
Thank you for
having me. When I looked at the program I saw that every speaker here
was a doctor, or at least could dance. Except one. So, why am I qualified to stand up here and
talk to you? Let me cite the ultimate authority, my first grade teacher,
Mrs. Bill. It was she who wrote in the comments section of my report
card, and I quote "Peter has lots of information he is willing to
share." It’s my mission in life.
I mentioned in a post to a Facebook page for people with Parkinson's Disease that I was working on a comic book about PD. The response from one man was "Too soon!" Really? Too soon for whom? I am ten years past diagnosis, when do I have permission to laugh? More important, why would I forgo a coping tool as powerful as humor?
I understand the fear that laughter can be inappropriate and may trivialize what is serious and sober. But I reject the idea that it's not OK to joke about serious things. That is a belief that trivializes and misunderstands humor.
There is tremendous precedent for making jokes about the important and serious sides of living. Bill Mauldin drew brilliant cartoons about that lighthearted topic World War II.
(Above, a Mauldin cartoon from WWII. Find a big ol' trove of Mauldin cartoons here )
Did Mauldin trivialize the war? General George Patton thought so. He met with cartoonist and attempted to to intimidate him face-to-face. Luckily for Mauldin, he had a fan who outranked Patton- Supreme Allied Commander Dwight D. Eisenhower. Not only did Ike outrank Patton, He also understood humor better than “Old Blood and Guts” According to Ike "A sense of humor is part of the art of leadership, of getting along with people, of getting things done."
At its most basic, humor is a tool for getting through the tough parts of life. Like any tool, it can be misused. There is no doubt that humor can be abused in the form of bullying. All of us can remember Rush Limbaugh's mocking of M J Fox. Pathetic as it is, even this brand of humor is protected by our Constitution. Humor by the strong that targets the weak and wounded is contemptible and needs to be called out as such by others exercising their free speech. Shame on us if we neglect doing this... because life has few pleasures to compare with skewering a pompous ass.
But let's return to the need we have for humor. Humor can do so much for us. Can you name your worst moment with Parkinson’s Disease? For me it was the moment I got my diagnosis. You can cry about it, as I did then, or you can laugh about it, as I can now. Below is an animated video I did as part of a series on PD. This one is about how the moment of diagnosis feels to the person diagnosed
Part of reconciling myself to that awful moment is gaining the power to laugh about it.
Here is something you don't see every day- a cartoon I did on facial masking in pd. Part of the loss of our ability to move our muscles voluntarily is the inability to express our emotions using the muscles of our faces. This cartoon uses humor to do at least three things. To teach, to comfort and to foster community. All that in a little drawing?
Well I've had reprint requests from professors, pd publications and support groups worldwide to republish this drawing for just those reasons.
I use humor to explain aspects of pd on my blog "Off and On". Here is a poem published there in April, PD awareness month. It’s also Mathematics Awareness month, Sexual Assault Awareness Month, Child Abuse Prevention Month, Confederate History Month, National Safe Digging month, Autism awareness month and more. So that’s a bunch of stuff to be aware of during April, one of the shortest months. How to get someones attention for PD? Why not use poetry? That way you can kill two birds with one stone, because it’s also National Poetry month.
Few things are as comforting as knowing you are not alone in facing your illness. This sense of solidarity can be sealed by the use of humor. When someone else “Gets it” like you do, you know you’ve found a person who likely shares your concerns and way of thinking. That's the idea behind my comic "Flash Molasses". Flash is a superhero whose super feats consist of dealing with the daily activities of life while at the same time coping with Parkinson’s. I've made Flash my alter ego so it's clear that I'm sharing the misery, not mocking it.
This first one is about “urgent bladder” like the header says, this is based on a true story. But please note that if Comtan is one of the drugs you take, (it is part of the pill that goes by the name Stalevo) your urine will likely be orange even if you are adequately hydrated.
(Click to enlarge)
Another sharing of the misery piece here, this is a short animated video about the frustration of waiting for your meds to kick in.
After a few years of blogging about Parkinson’s, people began
urging me to write a book about it. I resisted by pointing out that
there are tons of good books about PD, and asking people what I had to
contribute that was different. Finally, my friend Steve pointed out “You
treat Parkinson’s as an adventure.” That seemed like an angle worth
looking at. So I wrote one.
The book I am working on
tries to comfort and explain with humor, In fact there was too much
humor in the manuscript and the editor asked me to take some out,
explaining that it would become tiring to the reader. I did manage to
leave quite a bit in chapter two. Ironically this is one of the editor’s
favorite chapters.
And here is another use for humor. When the brilliant cartoonist
Richard Thompson was diagnosed with Parkinson's Disease, his friend
Chris Sparks decided to do something about it. Instead of a walk or a
pancake feed, Chris decided to use humor. He sold Thompson’s publisher
on the idea of making a tribute book to the cartoonist. The hook was to
have other artists draw their versions of the characters from Richard's
strip "Cul de Sac". Most of those in the cartooning world revere
Richard, and jumped at the chance to contribute.
Around 100 cartoonists, including Bill Amend of Foxtrot, Lynn
Johnston, of For Better or For Worse, and Bill Watterson of Calvin and
Hobbes contributed drawings. Long story short: over $100,000 raised for the MJ Fox Foundation for pd research. you can order the book through Amazon, or look for it at your local bookstore. Here is the piece I did.You will notice the Parkinson’s Disease monster indulges in “Bullying Humor” discussed earlier. It’s like a nasty talk-radio host.
I will close with the idea that humor in itself is good treatment for Parkinson's Disease. we all know our pd is aggravated by stress. What is better than humor for resolving this? It's known biology, laughter releases those feel-good chemicals endorphins that chase stress away, just like exercise can. I know plenty of pd patients who don't want to exercise. But who doesn't want a good laugh?
Finally, humor can decrease the power that something or someone has over you. This is why Syrian authorities kidnapped political cartoonist Ali Ferzat and broke his hands. It’s why the caricaturist Daumier was thrown in jail. Twice. Why does this undermining of power work? Because much of the power any force has is the power we give it through our fear. Humor can disarm fear thoroughly and permanently.
Humor is a dicey proposition with PD. People are fragile by definition when diagnosed with a major illness. But who could use a laugh more than someone who has had their mortality thrown in their face? (Hint: nobody, that's who) I'll argue that humor is one of the tools we have developed to cope with life's difficulties. Like any tool it can be misused. But if used right, it's a key to doing the job of coping your best with Parkinson's. We'll look at the different ways humor can help those of us with Parkinson's and how it can reduce the power this disease can have over us.
Spokane, WA
The Northwest Parkinson’s Foundation is hosting
its 2nd Annual Inland Northwest Conference on Parkinson's. An
educational conference for Parkinson patients, families, caregivers and
friends.
Saturday, September 7, 2013
9:00am-3:00pm
Registration opens at 8:00am
Breakfast snacks and plated lunch included.
LOCATION:
Northern Quest Resort
Pend Oreille Pavilion
100 North Hayford Road
Airway Heights, WA 99001
SPEAKERS:
Keynote
Dr. Anthony Santiago - Dopamine Replacement Therapies
Panel - Making Your Medicines Work for You
Dr. Pinky Agarwal
Dr. Laurie Mischley
Len Norfleet, PT
Dr. Jennifer Van Wey - PD Diagnosis & Relationships
Lynda LeBlanc - Dance for PD
Peter Dunlap-Shohl - What's So Funny about PD?
Including a Special Performance by the
Tremble Clefs Choir!
These two pages occur in separate chapters, but make an interesting contrast. The first is from a passage about the shock of diagnosis, and how professional healers can compound the pain of disease. The second is about the gratitude due to those from all walks of life who step up and help carry the burden. There are many thoughts to tease out of this contrast, one could write a book...
(Click images to enlarge)
Hi Anni,
Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.
As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association.
But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health.
Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.
There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.
Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge.
There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come.
Pam and I met Doug Bahniuk at the end of his 900 mile journey across Alaska (Photo by Pamela Dunlap-Shohl)
When asked why he he wished to climb Mt. Everest, mountaineer George Mallory is said to have replied "Because it's there". When you ask Doug Bahniuk why he rode his bicycle 900 miles from the North Slope of Alaska to Anchorage, he cites a more compelling incentive. Doug wanted to show other people who suffer from Parkinson's Disease that adventure and accomplishment are still within their grasp.
To achieve this, he set about a test that he describes as "Brutal". Riding solo across Alaska on a road of potholes and "washboard" ripples, a road littered with rocks the size of peaches, he fought headwind and fatigue for nearly three weeks. Doug rode through mud and mosquitoes up mountain passes. He sheltered from the rain under a bit of plastic. He pitched his tent over beds of rocks that prodded him at night through his blue foam pad. He fell off his bike three times.
He finally arrived in Anchorage hungry, bug-bit, triumphant and relieved. He can now return to his normal everyday life. A life where he must deal each day with Parkinson's Disease. A task that will surly seem tame compared to his wild ride from the remote Arctic back to civilization.
Mallory disappeared on Everest. Mortal risk was one of the hazards of going there. With Doug, it's not the going there that matters, it's the coming back.
Sources: Wikitravel, Doug's Wild Ride Blog. Click to enlarge
For those of you following the adventures of cyclist-with-Parkinson's Disease Doug Bahniuk at a safe distance, Here is a rough location based on a phone conversation. Doug is in Wasilla. We expect him Sunday. You can follow Doug on twitter and on his blog. Go Doug!
It bugs me that there are undoubtedly Alaskans out there with Parkinson's Disease who have no support group nor the ability to travel or live where there is one. As far as I know, the only group is in Anchorage. (Is there some group out there I do not know about? I would love to be corrected about this!)
As an experimental attempt to get at this problem I have created a new facebook page. So you're off in a remote corner of Alaska and dealing with Parkinson's Disease? This is the page for you. Post your questions and we'll try to get answers. Let us know where you are so that you can connect with others in your area.
Come on in, the stove is warm, and so is the welcome.
Hello all, below is information from the Davis Phinney foundation about a "Webinar" information session that they plan to hold on the 15th of June. The time is set for 1:00 pm Eastern Standard time which makes it 9:00 a.m. Alaska time by my not-too-reliable reckoning :) The Davis Phinney foundation is a PD group started up by Olympic cycling champ and PWP Davis Phinney. Their focus is in helping people with Parkinson's live well and maintain themselves.
While techno-wiz is not one of the things that springs to mind when you think "Pete" I am pretty sure that I can stream this to my large screen TV if anyone would like to come by and watch it at my house. Warning: If you do come over, you may be licked by an extremely cute Dachshund. If you would like to come, please send me an email (dunlapshohl(at)gmail(dot)com) by June 1 so I may make all in readiness.
Your humble servant,
Peter
More than 4,500 people living with Parkinson’s have been inspired and challenged to take action as a result of attending the Davis Phinney Foundation Victory Summit™ symposium in cities across the US.
Now, this information and inspiration is coming to you in the first online event of its kind.
Tune in on June 15, 2011 at 1:00 pm EST for the
LIVING WELL CHALLENGE:
A Victory Summit and Panel Discussion Webinar on how to live well with Parkinson’s
• Featuring presentations and discussions with leading researchers and movement disorder specialists from around the country
• Covering topics like the latest in research and clinical trials, nutrition, exercise, how to communicate with your doctor and your family.
• And finally, giving you access to worksheets and tools to support you in your
commitment to live well today
Challenge yourself to live well today. Watch with a friend or loved one. Tell your support group and tune in together. Get the tools and information you need to live well today with Parkinson’s disease.
Register today by visiting their website and clicking on The Victory Summit page. Or call 1-877-274-7673.
Anchorage Juggler Jim Kerr visited our support group with tips on balance and stretching. One tip we all agreed to immediately: Avoid stilt walking. We put this into practice right away and not one of us had been on stilts since. Thanks, Jim!
Our band was taking a quick break, a man jumped on stage and took my hand. "I heard you on the radio he said. Then he dumbfounded me by calling my interview "Brave".
Brave? Me?
You must have me confused with someone else. Someone with nothing to lose. Someone who isn't worried every day that he is finally seeing the end of his ability to drive, to draw, to write, to make music, to make love, to do, to be. Someone like... whom? Like someone who hasn't been paying attention.
I've been paying enough attention to realize I am at least among the lucky of the unlucky. I respond well to the medications available. We have the insurance to pay for expensive pills and surgery. With continued luck and discipline, the worst will be held at bay while I go on appreciating what my friend Janet calls "The finer miseries of Parkinson's".
How different does that make me from anybody else? Who isn't pushing their rock up a hill? Who Lives more than a phone call away from tragedy? Who doesn't depend on the fine calculation of other drivers on the road to keep a trip to the grocery store from becoming a trip to the emergency room? Who doesn't carry some rogue cell, a bit of themselves that will rebel and fester until it overwhelms the life it is a part of?
Herman Melville wrote of the whalers in a harpoon party at sea. Fragile men in a fragile boat, rowing toward a Sperm Whale to kill it with a small spear of iron and wood attached to a rope. The rope threaded throughout the boat and when a whale was struck the line jerked alive with deadly speed. The rope could snatch away a life or a limb on board the boat with impersonal lethality. Melville knew that we all are surrounded by such ropes and thought that a whaler was at least fortunate enough to see them.
Most of us are at least dimly aware of these ropes. Much of what we do every day is spent at some level trying to elude or escape them. To see the rope is to fear it less, to know where not to step, to keep a hand clear. What is truly frightening is what you do not know: Where the whale is, what it will do next. Facing this is the bravery required of each of us, and it is the price of a good life. This price is the same whether you are diagnosed or not. Diagnosis is merely to be shown one of the ropes.
Bryn Williams maks the case for urgenccy at the recent World Parkinson's Congress in Glasgow. You can visit his terrific web site for more from this passionate and optimistic man.
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 transformative, 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 transformative. 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”.
I didn’t.
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.
Well it looks like mum's the word for PD patients who are in the act of walking. According to scientists at Florida State University those of us of the Parkie persuasion are increasing our risk of falls if we jaw while jogging. No word if screaming while you fall also amounts to the kind of multi-tasking we should avoid. But if you ask me, I say, scream. What have you got to lose?
On considering this latest bit of information it hit me that there are vast implications in the Things for Parkinsonians to Avoid Doing Department. Just to be helpful, I have compiled a handy list of additional potentially hazardous forms of multi-tasking for we Parkies to avoid. NB: many of these have yet to be studied by researchers, but I am rushing to publication with them anyway. NB2: This is NOT an exhaustive list, and you should not conclude that just because it's not listed that a particular form of multi-tasking is in any way safe or endorsed by this blog. When in doubt, assume the fetal position and refuse to move. Wait, that would be multi-tasking. When in doubt, just assume the fetal position. Call me sloppy, but for heaven's sake, not while you are walking.
List of Multi-Tasking No-Nos
Rubbing BBQ sauce in your hair while sticking your head in the mouth of a lion or other large predator
Yelling "FIRE" while in a crowded theater (unless, of course, the theater is on fire)
Greeting your friend John with a hearty "Hi, Jack!" while standing in a TSA line
Petting a porcupine while chewing gum
Tugging on Superman's cape while spitting into the wind
Pulling the mask off that old Lone Ranger while messing around with Jim
Drinking and unicycling
Operating heavy machinery while sleeping
Murmuring your girlfriend's name while making love to your spouse
Murmuring your spouse's name while making love to your girlfriend
Kicking sand in the face of a bully while being a 98-pound weakling
Yelling "FREE BIRD!!!" while attending the symphony
Acting as your own attorney while having a fool for a client
Repeating "Hide me, The monkeys are in the control booth!" while undergoing a psychiatric evaluation.
French-kissing an ostrich while either sober or inebriated (either of you)
Laughing maniacally during confession
As I mentioned above, this is not an exhaustive list. If you notice any egregious omissions, please post a reply with your multitasking no-no. If you have a complaint, just give me a call when you're out walking.
Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.
Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.
The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!
Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.
The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:
Know your pharmacist The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.
Know the shape, color and size of your medications if something looks different, ask. Pharmacists do make mistakes sometimes.
With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.
Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.
Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.
Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.
Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.
One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.
Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.
So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.
Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".
On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.
From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.
He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!
What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!
Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.
That's all from this edition of on the job training here at Parkinson's University (P.U) Let's conclude with the P.U. Anthem:
For Parkinson's we won't sit still, Though long the climb and steep the hill Until we've popped our final pill, P.U. we'll keep learning. Depressed and slow, dysfunctional too Still we raise our glass to you We'll kindle hope and rise anew. And keep the home fires burning.
A reader just passed on this fascinating New York Times story that deals with the tremendous amount of non-verbal communication that people transmit with subtle facial cues. Cues that we people with Parkinson's Disease are often unaware we no longer send. (You can find an earlier piece that I wrote on this subject here)
This is a valuable reminder that if we do not understand and somehow compensate for the meanings and nuances that we do not transmit because of our frozen faces, we are likely to encounter more than misunderstanding, we may be dismissed as dull, or perceived as angry. Which of course we may be, but who wants to start with that as the default setting for their face?
The article discusses several strategies that people use to get around the problem of the paralyzed face. Unfortunately some of these, such as the exquisitely pitched voice, or the well-tempered laugh, are difficult for those of us with Parkinson's to execute. It's important to be aware of this and work out compensating strategies. I've found it useful, even necessary at times to explain my poker face. People may assume that if you appear to be hiding your emotions, there is some deep and nefarious reason for it, and it puts them on their guard.
How important is a facial expression? So important that it can be read across species lines by our pets. Dogs are great students of humanity (cats don't give a rat's tail) and can learn to mimic a "social smile" I know this because my old dog, the legendary Sadie, learned to do it. We came home one day from work and, in addition to the customary leaping and tail-wagging, we were greeted by a slight curling of her lips. "We've got a grinner dog! Pam exclaimed, and from then on whenever she would start with one of her peculiar little grins we would smile back with all the wattage we could muster, until she mastered a wide grin that, if you didn't read the rest of her body language, bore an alarming semblance to a snarl.
How do I know that this was a "Social smile"? I saw her use it as one, just as a human would. This was years ago on a ski trip that took two days. On the morning of our second day we emerged from our chilly sleeping bags and set about cooking a hot breakfast. I don't remember exactly what we fixed, but to a cold and hungry dog it must have smelled of heaven.
My friend Peter loaded his plate up, then set it down to fetch something. Sadie crept quietly up from behind and was about to devour his breakfast when Peter turned around and caught her, unleashing a fusillade of angry words. Sadie retreated about ten feet, then turned around and gave him the biggest "Who me?" apology grin of her career. It was a brilliant deployment of a facial cue, and it worked, getting her off the hook.
A hook that impales me frequently now that I must concentrate and remember to smile. It's easier when I remember even a dog will do it.
Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.
For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.
Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.
Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.
To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.
In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?
How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)
Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.
Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.
