John Ball's speech from the Parkinson's New South Wales Conference - 11/12/2008

I was just sitting at my desk one early summer evening when the phone rang and a gentleman named John Silk asked if I would like to speak at his upcoming Parkinson’s Congress. I asked where and when because it is my goal to speak whenever I get the opportunity; after all, you can’t make a difference if you don’t show up. He replied, “In October, for the Parkinson’s New South Wales here in Sydney, Australia.” I sat there a moment, wondering if I’d heard him correctly, but then I matched his accent with his statement, and he certainly sounded Australian to me. All I could think of to ask was, “Can I bring my wife?” He agreed and we had a deal.

I had always wanted to visit Australia, but had never made it. Edna and I even set money aside for the 2000 Olympic Games in Sydney, but the trip eventually fell to the wayside as costs escalated. (The savings were repurposed to buy Laker season tickets, which has proven a worthy substitute.) So now I finally had an opportunity - and all I had to do was talk. I can do that! I worked long and hard on my presentation, starting with one written for a USC Symposium in 2005. That was a very successful presentation, and the one that had caught John Silk’s attention. But I didn’t just want to reuse the same speech even though it had never been heard in the land down under, and so I rewrote it from beginning to end. It took several weeks because our understanding of Parkinson’s has changed so much since then. That speech was honestly out of date in just three years.

John’s organization was frequently in contact with me and with Dr. Abe Lieberman, another conference speaker invited from the USA. They planned for us to travel together from LA to Fiji and Fiji to Sydney. Since the detour saved the organization considerable cost in air fare, we got to travel business class. We weren’t allowed out of the airport in Nandi, but I guess I can say we’ve been to Fiji. Dr. Lieberman, who was formerly the Medical Director of the National Parkinson’s Foundation, is now the head of the Muhammad Ali Parkinson’s Center at the Barrows Institute in Phoenix, Arizona. His wife, Dr. Ina Lieberman, is now the administrator of the Ali Center. They would both be speaking at the conference. The trip was long, but very comfortable, and we arrived in Sydney at midday on a rainy Tuesday. We were met at the airport by Nick, our personal driver for the entire stay in Australia. He normally drives for John Silk, and we were very appreciative that John turned him over to us for our visit. Neither Edna nor I could have managed the right-hand drive traffic. The last time I tried it was 30 years ago, and I ended up trying to go the wrong way on a roundabout in a total fog. Not good!

Wednesday was spent with Nick driving us to the famous beaches of Sydney, Bondi and Manly, and lunch at Jonah’s, an exclusive restaurant overlooking a lovely beach on the north side of Sydney Harbor. Thursday and Friday were full days at the conference with an entertaining dinner for all the conference attendees on Thursday night. I got the kickoff slot - first on the agenda – and gave it my best to start the conference off on the right foot. John was quite clever to follow my presentation with a beautiful young doctor from England who is researching visual cuing as a technique for helping PD patients move more effectively in their homes. The work she is doing is very practical and was very well presented. It was like that throughout the entire conference. There were presentations on subjects as varied as basic science, i.e. the role of melanin in neuronal cell death, to sex and intimacy with PD, and (can you believe it?) salsa dancing. Both Exercise Physiologists and Psychologists/Counselors attended and spoke as well. It was a thorough cross section of what is going on in the study and treatment of PD worldwide. I was very happy to be a part of it. I also got to have breakfast with 35 or 40 of the attendees on Friday morning and read them my story of running the Catalina Island Marathon. When I told them how Doug had sacrificed his own race time and waited for me at the top of the last ridge to make sure I finished strong, I guess I put a little emotion into it, because they were all in tears when I finished the story. At dinner on Thursday night we got a real treat as one of the conference attendees, an older lady with Parkinson’s, had asked her son to share his thoughts on living with a mom and dad who both suffered from PD. He was hilarious! I think he did us all a world of good by helping us laugh at ourselves. We had a great time really, and made many new friends. On Saturday after the conference, we took a harbor tour with John Silk and his wife Becky, Drs. Lieberman, and the conference organizer, Miriam Dixon. It was a beautiful day and the harbor was full of sailing ships and racing boats. Check out the photographs that accompany this note. Some of them are quite spectacular. The harbor tour was the last of the official conference activities but we had decided to stay on a couple more days and do a bit of sightseeing. We moved into the downtown city proper and walked miles and miles looking at this clean and modern city. I got in 9 holes of golf at the fabulous Monash Country club but couldn’t play worth a darn. How typical!

We also went on a coach tour of the Blue Mountains, visited a wildlife park to see native animals, and saw La Boheme at the Sydney Opera House. Our last day in Sydney we walked about in gusting winds and cold rain but it didn’t dim the enjoyment. I guess you’d have to say it was a successful trip in every possible way. Many thanks to John Silk and his entire organization for having us there.

John Ball


View John's Photos from Australia


Living Well and Running Hard
By John Ball

For Parkinson’s New South Wales Inc., Sydney - October, 2008

I’d like to read a poem I wrote a couple of years ago. I was just having fun when I wrote it, and I still find it fun to read today.


Me and My PD

Although I live most healthily,
I still have Parkinson's as you can see.
When I'm "off" I shuffle and stall.
Sometimes I go backwards till I fall,
Without my meds I wouldn't get up at all.
Dyskinesia, depression, a stiff neck and sore shoulder,
These are today, I can’t wait to get older!
While I eat my feet dance like crazy;
Under the table I kick my wife;
I say, "I’m sorry!" then I drop my knife.
She thinks I'm lazy 'cause I won't fix dinner.
I know it's crazy, but we'll both get thinner.
The medications I take make my behavior quite weird;
So I went into hiding, here under my beard.
Some of us gamble, some of us shop,
We know its compulsive, but how can we stop?
When I need a retreat, when I’ve duties to dodge,
I head for my safe spot, my cave, the garage.
I get compulsive about the projects I start,
So once I commence on a piece of my art
I work and work and will not stop
Until the project is perfect -or a total flop.
Yes, I'm a Parkie, so hear me out,
I'm just like you, except when I'm not.
I'd be normal if I could,
But maybe that life wouldn't be this good.

I guess you could call that a day in the life of a person living with Parkinson’s – Sometimes we forget who we are and think we can do all the things that normal people do, and sometimes we overreach our abilities. But, personally, if I fail, I want it to be from reaching too far - rather than to fail by giving up on my dreams and expectations.

As a child I had many dreams. Some of the more ambitious ones included running in the Olympics, conquering the tallest mountains, and flying rocket ships to the stars. Well, I was never an Olympic-level athlete, but I did run on the track and cross country teams for my high school and university. And I never became a world-class mountain climber, but I did learn how to backpack and travel safely in the wilderness. And, for a variety of reasons, I never became an astronaut, but I did at least learn to fly and recorded a couple thousand hours in my logbooks. As I transitioned from child to adult, those activities – running, hiking, flying - became important aspects of my personal pursuit of happiness. I wanted to turn those dreams into achievable goals. While running for my university, I was more often hurt than healthy, and the best I could do was run the mile in a sluggish 4:18. It was only 12 years since Roger Bannister had broken the four minute mile barrier, but in those twelve years it became quite achievable for the top flight college athlete, so I was second-tier at best. Later, after serving during the Viet Nam conflict as a pilot in the military, I returned to graduate school to study English literature and tried to take up running once again. Every time I went out for a run, my left foot would cramp up. I was 28 years old and couldn’t run half a mile without this absurd muscle cramping. That was my first signal of an approaching problem.

As time wore on, other signs appeared – difficulty standing up straight, getting stuck in place, knees and elbows that were stiff and sore, joints that ratcheted like old worn gears. I went to the doctors again and again and they all shook their wise heads and said, “Well, if I didn’t know better, I’d say it looks a little like Parkinson’s, but it can’t be that. You’re way too young, way too healthy.

The first one said “I think what you’ve got is Coreo Athetosis.” Well, it wasn’t that, whatever that is.

The second one said, “No, I think it’s a circulation problem. Let’s put you on a treadmill and wire you up with sensors.” Well, it wasn’t that either.

The third chimed in, “How about a brain tumor? That’s always fun.” The cat scans showed nothing abnormal.

Finally the mechanic in the group, the orthopedic surgeon said, “Maybe it’s just a mechanical problem. I think you’ve got the piriformis muscle pinching your sciatic nerve.” You know, he was so compelling I let him operate on my derriere, but the best I can say is that I eventually recovered from the surgery. In every case, the cramp always came back.

This sort of treatment went on for twelve years, until, finally, the neurologist gave me a small packet of yellow tablets, and told me to take one to see what effect it might have…I took the tablet just before a softball game. Our team was a bunch of guys from work, and I had been part of the team for five or six years. They had carried me as my ability declined from the outfielder to second baseman, from second base to pitcher, from pitcher to catcher. It had gotten to the point where I couldn’t throw the ball back to the pitcher without bouncing it. I couldn’t throw a softball 45 feet. If I had to bat and actually hit the ball, they had to send a pinch runner to first base. But on the night I took that first yellow tablet, something magical happened. By the third inning I was feeling better and into the game. Right there in the middle of the inning, our pitcher, Larry, came down from the mound and asked “What’s going on John? You’re standing up straight and throwing me the ball like the old days, without bouncing it.”
“It must be these magic beans” I said, and showed him my oval-shaped yellow tablets.

I went home that night and looked up those tablets in my drug encyclopedia. It was a combination of levodopa and carbidopa called Sinemet 25/100. After 12 years of cat scans and spinal taps, blood samples and even major surgery, there it was in simple print: “For the treatment of Parkinson’s disease.”

I knew this was it. This was the name I’d searched for so long. I also knew that Parkinson’s was a degenerative neurological condition, and that there was no cure. I knew this because I had been watching my mother-in-law slowly losing her life to this disease. What, I wondered, would this do to my dreams, my running and hiking and reaching for the stars?

It wasn’t just my dreams I had to wonder about, it was about life. There is a lot of life that happens between your twenties and turning 40, like finding a meaningful career, creating a home and family of my own, building a place for your family in society, et cetera. Most of these are challenging enough goals even for healthy people, but would they prove overwhelming for someone with a chronic, degenerative illness? My children, David and Sarah, were four and three years old when I was diagnosed. I knew there was only one way to find out. All I could do was get up each day, put my hands on the wheel and keep my nose to the grindstone. Somehow, I made it safely through these challenges, and I feel very blessed...

As far as my goals are concerned: I know now as a 64-year-old that I will not be piloting rocket ships to the stars, but I need not blame that on Parkinson’s. After all, I don’t see anyone else going there either. And I know that I’ll never conquer Mt. Everest, but I’d be lying if I blamed that on Parkinson’s as well. And finally, I never made the Olympic team, but I haven’t given up entirely on calling myself an athlete. I haven’t really given up any of my dreams; I’ve just had to reshape them. Oh, I still find a way to fly occasionally, even if it’s just remote control airplanes. And I have learned that by carefully gathering my resources I can still scale smaller mountains, and by planning strategically and training hard I can still run. The best thing I’ve learned is that by setting these challenging but achievable goals I can help and inspire others to achieve their goals.

As to my dreams of scaling the highest peaks; in the fall of 2004, I climbed Cirque Peak with my older brother Jim and his girlfriend Nancy. It’s a 13,000 footer in the Sierra Nevada’s of California. It was Nancy’s first summit, and preparation for climbing Mt. Kilimanjaro. As we finished the descent, she said, “That was the hardest thing I’ve ever done.” I knew she would have to revise that after Kilimanjaro, but I was very glad to have helped her get ready for a truly extraordinary effort.

And my Olympic dream? Well, this spring I ran my 13th consecutive Los Angeles Marathon, and finished in 4:49:22. Certainly not an Olympic-level performance, but I was in the top third of my age group. Since then I’ve run both the Catalina Island Marathon and the San Francisco Marathon, bringing my total to 19 complete marathons. The course on Catalina goes up and down over 4,000 feet of elevation change, so it took a bit over 5 hours, but I finished San Francisco in 4 hours, 23 minutes, 22 seconds. I also clocked a sub-2-hour half-marathon earlier this year. I hadn’t gone that fast in quite a few years. My wife says I may not be getting any younger, but at least I’m picking up a little speed. You may wonder how this is possible since I’ve been living with Parkinson’s for over 35 years. Well believe me, there are times when I wonder as well.

Needless to say, I have been paying close attention to the study of Parkinson’s, and to me it is clear that the classical picture of PD is out of date and must be replaced. Parkinson’s is not a dopamine-specific disease, nor should it be categorized as strictly a movement disorder. Those classic symptoms of tremor, rigidity, slowness of movement, loss of gait and posture, are actually mid-to-late-stage developments in PD. We now know to look for earlier symptoms such as reduced sense of smell, disturbed REM sleep, constipation, and problems with the autonomic nervous system, including respiration, perspiration, blood pressure regulation. This disease does not start in the substantia nigra where the dopamine-producing neurons live. The damage starts in the much older, more primitive parts of the brain, on the brainstem near the olfactory lobe. The disease process has probably been at work for several years by the time the classical PD symptoms are visible. This creeping cell death follows a selective path in Parkinson’s, I think, but will, if we live long enough, probably continue through the brain to the outer cortex and affect both cognitive skills and executive functions. I am not just talking about memory loss or senile dementia, but loss of judgmental skills, decision-making and organizing skills. Certainly one of the early impacts of PD is reduced multi-tasking ability. I believe that our brains develop sub-routines that normally function without conscious thought, but with the loss of specific neurons, those sub-routines are lost and we must dedicate much greater portions of our brains to such actions as getting out of a chair or calculating the best value of products at the grocery store. If we focus on the problem, we can still solve it, but we have lost the ability to do things simultaneously and unconsciously. That’s what makes it difficult for me to get through the checkout stand at the store. I’d love to depend on those little automatic behaviors, but they’ve been lost. These cognitive and executive functions do deteriorate for most aging people with or without PD, but I think it will be important to identify which losses can be specifically linked to the pathology of Parkinson’s. With this new model, maybe we can look for earlier diagnosis and someday head-off this runaway train in our brains. Yes, we know a great deal more about the disease now than when I was diagnosed 25 years ago. We’ve widened our scope and realized there’s more to it than trembling fingers and a shuffling gait, but we still have no cure.

Since the introduction of levodopa more than 40 years ago, a plethora of new drugs have been introduced, but there’s no conclusive evidence that any of them can slow the progress of the disease. There are now several classes of medications, including dopamine agonists, COMT inhibitors, MAO-B inhibitors, anti-cholinergics and anti-viral drugs and even electronic stimulation available. At least with the introduction of all these new agonists and inhibitors we can usually find a mix that suits our particular biology and reduces our symptoms. But we still have no cure.

Although we now know that the disease results from the malfunction or death of neurons in the mid-brain and expands outward over time, the cause or causes of that cell death are still uncertain. Most of us assume that there are only two categories of possible causes: heredity and environment. Does PD stem from genetic defects? Well, more than a dozen potential genes have been identified. Or is it the result of environmental toxins? Several compounds are known to cause PD symptoms in lab animals including MPTP, and rotenone. More than likely, it is a combination of both a genetic predisposition for the disease, and an environmental trigger such as pesticide exposure, or oxidative stress, trauma, inflammation, or even psychological stress. Fortunately, the only specific agent known to give humans PD symptoms is MPTP, which has provided us a very valuable tool in research in animal models of the disease. Because we can now study it in animals, we are closer to identifying the cause or causes than ever before, but we still have no cure.

For most people, Parkinson’s is a very isolating disease. It’s like a net thrown over us. That net restrains us, and shrinks our world into smaller and smaller circles of contact with the world. It is this continual sense of loss that is so depressing for many Parkinson’s patients: loss of skills, mobility, jobs, and friendships. With this continual loss comes a sense of diminished value, of losing not only your abilities, but also your sense of worth in the world. Attached to that loss is a sense of guilt; you live with the knowledge that what PD takes from you, you no longer have available to give to those you love. My friend Dan is in his early 40s and has had Parkinson’s for nearly ten years. He is also a new father. His tremors are occasionally severe enough to make him reluctant to hold his baby daughter Lucy in his hands because he’s afraid he’ll drop her. He’s concerned that she will think him a cold and distant father rather than a vital part of her life. How will this play out over the next 20 years as she grows up?

Parkinson’s is now on the leading edge of the neurological sciences. It’s where doctors expect the first breakthrough to a cure for many chronic diseases. I remember thirteen years ago (way back in 1995), Dr. Abe Lieberman of the National Parkinson Foundation said that he thought a cure was “just around the corner.” And nearly ten years ago, Dr. Fishbach, then head of the National Institutes of Neurological Disease and Stroke, said that he was confident that, given the proper funding for NIH, we could find the cure for PD in 5 to 10 years. And the NIH even developed a specific funding plan to do just that. Well, here we are folks; it’s late in 2008 and we have yet to find either the cause or a cure for PD. Some of my friends on the web are wondering if - as a society - we have sufficient commitment to the task. Where are our priorities? The budget increases planned for the NIH have gone to buy weapons for use in Afghanistan and Iraq. Have those wars brought us any closer to security from terrorism? If so, at what cost? Is it worth slowing down the study of Parkinson’s or Alzheimer’s or MS? Is that a good deal for us or for our children?

Maybe there will never be “a cure” for this disease. My best guess is that there will never be a single “cure” for PD because what we see as PD may have a variety of causes, and therefore need a variety of cures. Stem cells may be a useful part of a larger strategy, but I’m not looking to them for “the cure.” But I do know that for the first time, both the medical/scientific community, and the patient community are working together to make change. And the biggest change I see is in the treatment strategy. Rather than treating the deficits in our motor function, neurologist are treating the whole person and trying to improve our quality of life.

Since my diagnosis 25 years ago, I have seen tremendous changes in both our understanding and treating the disease. I can see that our rate of gaining new knowledge is escalating, and therefore, I begin to have some confidence that we will find relief from PD, if not a true cure. I’d be very happy if that happens in my lifetime, because I don’t want my kids to face this, or to face the prospect of caring for me. I believe we are on the right path, but until there is relief we must learn to live better with this challenge.

I’ve lived with Parkinson’s for over half my life, so what have I learned from it?

Lesson number 1: I am not defined by my disease. I have Parkinson’s. It doesn’t have me. It’s just something that happened to me, like having blue eyes or losing my hair. I don’t believe that God designed it as a punishment for my shortcomings or a test of my character. It is just an obstacle to be overcome, and I choose whether to be a victim or a victor.

As I was preparing to retire from my career as a training manager at American Honda, someone asked me why I got Parkinson’s. I tried to explain that scientists are still looking for the cause of PD when she stopped me and said, “I know why you got it.” I looked at her and said, “Then would you please tell me.” She said, “Because you’re going to do something about it.” That brought me to a complete stop. Even if she was right – the question remained: what could I do about it?

Here’s what I decided to do:

Take care of myself first. I know that sounds selfish, but it’s like they say on the airlines about the oxygen mask. You won’t be able to take care of others if you don’t take care of yourself first. That means living a healthy lifestyle. A healthy lifestyle includes eating a good diet, balanced nutritional value, not overeating, not drinking to excess, getting as much sleep as possible, keeping stress to a minimum and all the other good habits that healthy people live by. It also means learning which foods impact my medications, and when to take my meals so they do not interfere with my medications. And, most importantly, it means paying attention to my level of fitness and staying strong.

Fitness and strength are huge assets when it comes to dealing with Parkinson’s symptoms. I know that my fitness level controls how much I can do and how much I have to off-load to family, friends or caregivers. I can be a lot less burdensome to others if I take care of myself first. I have to be willing to put in the hard physical work required to stay in top shape. For me that means running between 5 and 10 miles regularly, riding my bike, doing my back and upper-body exercises because if I just let it slide, even for a short time, I know I’ll get injured and I know I’ll be in pain.(Hey, did you notice in the news a couple of weeks ago? Doctors have recently discovered through a large scale survey of PD patients that there is pain associated with PD! Can you believe this is news to anybody?) Believe me the pain of injury is far greater than the pain of working out. And the time I spend on my exercise is more than paid back by the strength I have as a result and the things it allows me to get done. And, to be honest, running and riding also allow me to satisfy some of my social and competitive needs as well. One more thing: it’s the only thing that is entirely under our own control. As far as which exercise is best for Parkinson’s; it’s the one you like the best and will do most often. A good exercise for PD will include duration, complexity and intensity. That can be anything from swimming to weight lifting, tai chi to tango.

I also decided to become part of a community. This took me some time to figure out, because I thought I was quite successful in dealing with my Parkinson’s by myself. It took me several years to figure out that I really wasn’t dealing with it by myself. Everyone around me at home and at work was dealing with it as well. None of us with chronic illness can deal with it in isolation because it affects everyone around us, particularly those closest to us. I am not a big worrier about the future, but does that mean my kids weren’t worried about how long their Dad would be able to work, whether there would be money enough for college, whether I will need a lot of care on their part as I grow older? There are so many questions that they were probably afraid to ask. And how about those who depended on me at work? How much trust could they extend when PD made it difficult to predict how much I could get done day-to-day? Or how long I would remain at work? So I had a lot to learn about how my Parkinson’s affected those around me, and I didn’t really learn that until I connected with others living with this disease.

I went more than 10 years after my diagnosis before I attended my first support group meeting. And I went, finally, not because I thought I needed something, but because I was invited to speak about running the marathon. I thought I had something to teach, and what I discovered was that I had so much more to learn. Once I connected to the patient community, I began to truly learn how complicated it is to live successfully with this condition.

The third thing I did was to identify Parkinson’s as a cause worth living for and dedicating myself to. It wasn’t enough for me just to join the community - I needed to become an advocate for it. I believe that you really can’t make a difference if you don’t show up…So I try to be a part of everything that has a bearing on the PD community. I go to every meeting or support group I can. If I can get there I‘ll be there. I have called on the US Congress each of the last ten years with the Parkinson’s Action Network (PAN)to put a face to this disease and made sure that my voice was there to be heard. That’s also why I’ve I’m happy to be here today, because I know I can’t make a difference if I don’t show up.

In 1999, it was that same sense of commitment to a cause that led Mary Yost and a few friends, including Edna and me, to form Team Parkinson. Team Parkinson was created to serve two goals: to raise awareness of the impact Parkinson’s disease has on society, and to help raise the money needed to find a cure. In addition, it’s become an opportunity to inspire others to take on challenges of their own. I think we’re doing that with some success. We have been an official charity of the LA Marathon for 9 years, and in that time we have raised over $1.5 million dollars for research. Oh yes, we’ve also had 15 people with Parkinson’s finish the full 26.2 mile marathon. This March we had five PWP finishers for the second time.

Lesson number 2: I also learned to decide for myself what’s really important for me to keep in my life and what to be willing to give up. I loved riding motorcycles and flying airplanes for example. And when I was diagnosed with Parkinson’s the doctor said I had to give up my aircraft medical certificate and he told me to get rid of the motorcycle. I did so because I didn’t know any better. I went ten years without riding or flying, and then learned that I didn’t really need to. Ten years after my diagnosis of Parkinson’s I was still able to pass a flight medical exam and my flying privileges were restored. I had to learn the hard way that many times people will recommend that you give up the more challenging aspects of your life, and think they are being kind to you, when in reality they may be taking much of the joy from your life. I learned to decide for myself what I can or can’t do. That doesn’t mean I just ignore the advice of my doctors or my family when they say I shouldn’t do something, because some things are genuinely risky because of PD, like wood working. Yes, I lost part of my thumb, but I’m going to keep my woodshop going as long as possible.

Lesson number 3: I learned how to adjust my targets and expectations as my capabilities change. I know that Parkinson’s has eaten away at my productivity. I know I’m no longer able to multi-task like I used to. I recognize that I am less able to get everything done in a day than I was 10 or 15 years ago. Hey, I can blame it on PD or I can blame it on being 64, but it doesn’t make any difference; nor does it do any good to shift away the responsibility. If I think something is important, then I need to make sure it gets done. That doesn’t necessarily mean I have to do it myself…it may mean that I have to empower someone else to do it. It may mean that I have to give that person absolutely clear instructions and a good reason to want to take care of it. It may also mean that I have to be honest with myself and ask for help when I need it. In other words I have to look at my total resources available to get the important things done. And I have to deploy those resources like a good manager to make sure that the goals are achieved. I may have Parkinson’s, but that doesn’t mean I have nothing more to do in life.

Lesson number 4: I need to keep growing and taking on new skills and new challenges. Our world is changing all around us constantly, and I want to be able to grow with those changes. Not only that, but my Parkinson’s symptoms are constantly changing as well. I have to be prepared to adapt my ways of doing things as my condition changes. That means I have to have the right tools in my tool kit. What I mean is that we have all assembled over the course of our lives the habits of thought and action that make us comfortable in handling life on a daily basis. Just like my garage and workroom are full of hand tools for my woodworking and model airplane building, my head is full of tools for managing work that can be applied to dealing with PD. Primary tools include problem solving and decision making skills learned in flight training and business management courses; my strength and fitness; my wonderful wife and kids; and my leadership skills acquired over a lifetime of work. Those skills work just as well at managing PD as they did at managing a department. My tool kit also includes my neurologist, Doctor Mark Lew, and a wonderful team of support personnel, including the physical therapists, exercise physiologists, and Lori, my masseuse.

Another powerful set of tools in my kit are my medications and my understanding of how they work. I have developed my personal cocktail of Sinemet, Comtan, Zelapar, Mirapex and Amantadine. I wouldn’t recommend it for anyone else in particular, but it works for me. Another vital tool is my knowledge of this disease, because I think it is important to know as much as I can about this Parkie that lives within me. That’s why I say, “It’s not the guy with the most toys that wins; it’s the guy with the most tools.” If I keep all these tools at my fingertips, and keep them sharp and ready to use, how can I not succeed?

Lesson number 5: Parkie can be a devious companion to deal with, and he doesn’t always come straight at you. I’m talking about depression. It’s part of PD, and for many of us, it is part of life. I’m not just talking about having the blues; I’m talking about being clinically, and chronically sick. Depression can strip you of your most comfortable tools. It can take away your logic and fog your perception of reality. It can dull your senses and blur your feelings to such an extent that you mistake pain for pleasure and abuse for love. It can make you hate this life you normally love. It can also make you terribly ineffective at work and unable to achieve the goals you set or those your management sets. I have been there. I have felt the urge to give up, to give in to the longing for release and take that swan-dive from someplace high. Don’t let it do that. I did recover…it just took some new tools in my kit. I found I needed to expand my doctors’ circle to include a psychologist, and needed to include an anti-depressant in my medications list for a while. I also enlisted the help of friends and family to correct my misimpressions and help me see reality. I also needed to cast aside those feelings of guilt and unworthiness. It wasn’t my fault for having PD, and I wasn’t to blame for being depressed. It’s just another symptom of this disease. It isn’t our fault for being sick, but we do have to take responsibility for our recovery. We are each responsible for our own happiness, and we are each responsible for making our lives worthy of the gifts we’ve been given. I tried to do that in my working career, and I’m still trying to do that through Team Parkinson. I’m still fundraising, and training hard for my next marathon, which will be my 20th overall and my fourth this year, on November 16th in Pasadena.

Lesson number 6: Looking at it realistically, I would have to admit that the challenge of Parkinson’s disease is a mixed blessing. Yes, it’s a sly and challenging companion to live with, and a constant threat to wreak havoc on my future, but I have learned so many things I might have missed had it not slowed me down and made me aware of what was at stake. I might have missed the many incredible friendships and the truly wonderful people I have met because of it. A year ago, I gave a lecture on PD at Whittier College, and afterward a student asked if I thought my life was better or worse because of Parkinson’s. I had to admit that I am very happy with my life, and I believe it is richer and more meaningful because I have found a community to care about and focus on.

It has taken me more than a dozen years to put all these thoughts together in a book about this experience. It’s called Living Well, Running Hard: Lessons Learned from Living with Parkinson’s Disease. It goes into a great deal more depth and detail about running and hiking and living this experience. It’s available through the publisher, Author House, and through retailers on the web like Amazon and Barnes and Noble. I have a few copies of the book with me and I’ll be signing copies of it after this presentation, or at breakfast tomorrow.

Let me finish by reminding you of something I learned in Boy Scouts. My scoutmaster always said “Leave the campsite cleaner than you found it.” ...Well, I’ve both simplified that, and expanded it. My goal in life is to leave this world a better place than I found it. That’s easy to say, but a lot harder to accomplish… It’s kind of like running the marathon, it takes lots of practice and preparation, and even when you think you’re ready, there is still a lot of work to be done, but I think it’s worth the effort.

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