John Ball's Speech from Mo Udall Symposia in Phoenix.

Life in the Balance
John Ball

I awaken at 2:30 AM. The room is quiet, and very dark, but I need to pee. I get up carefully, quietly, so as not to disturb my wife. I swing my legs over the side of the bed and my feet reach the carpeted floor at the perfect height to stand up in a single motion. It works that way because at the time I built this bed, I knew I had Parkinson's, and knew that PD would someday make it very difficult for me to get in and out of bed. My wife and I both knew - because we had watched her mother slowly lose her own battle with the same disease. Channa Bialek was diagnosed with Parkinson's at the age of 47, in Montreal, Canada, when my wife was just 11 years old. That was 1961 and in that very time and place, Dr. Cotzias was first using levodopa to treat Parkinsons patients. Channa wouldn't have the benefit of that marvelous drug for more than ten years after her diagnosis.

I stand and shuffle forward in the dark. I have planned and executed this maneuver in total darkness many times; sometimes more than three times in a single night. But that was before my prostate surgery. Now, I am comfortable making this journey once a night. Some rare nights, I can even make it through to morning. I move slowly, because I am out of balance and balance is crucial to us Parkies. In fact, it's the theme of my story, and of this conference as well.

Balance is such a multi-faceted word. It means, at the simplest level, to keep things equal - to balance the scale. But it also means to balance the books- as in how much is coming in versus what's going out. It means the ability to stay vertical when things about you are tipping - like the pitching deck of a small ship. We also use it to mean keeping things in perspective - to know when to hold'em and when to fold'em. I wonder as I wander to the bathroom: Is it harder to balance in the dark than in the light? Here I have no visual references, but I still have my internal references, and I have the wall to my right. When I wobble in the dark, I reach out for that wall, but I do it with caution because there is a large naked lady hanging there. Well, she's in a frame and on a hook and I will have to straighten her up in the morning light if I tangle with her here in the dark. I wobble because the effect of my medication has worn off in those few precious hours while I was asleep. The Levodopa/carbidopa slow release tablet I take each night at bedtime has not released slowly enough to last through to morning for several years now. Well, morning is still hours away and it's dark and I must turn the corner to find the bathroom door. It's lighter out here in the dressing area, because the streetlight filters through the heavy growth of bougainvillea outside the second story window. Our bedroom is upstairs, which, in the long run, may prove to be a bad idea, but it provides us a big bedroom, the size of the two-car garage over which it was built. I love this room, its large space, its unique layout, its colors and its artwork. My wife and I have worked together to make this house our home and this upstairs space ours alone. I built the cupboards and vanity, and she designed the tile work in the bathroom and dressing area. We've selected the art together. It is hard to believe we've been living in this house for over 30 years now, and climbing these stairs together nearly every night for the 20 years since we added the upstairs onto it. It's harder yet to accept that my Parkinson's has been with me even longer than that; more than 35 years since my first symptoms and over 25 since my diagnosis.

In some ways, I consider myself a fortunate man to have had PD for so long that I can't imagine life without it. It has helped me realize that life goes on within you and without you, as John Lennon wrote, but Parkinson's also goes on within me and until we find a cure, it will go on without me. Edna and I have lived with it so long it's just part of us. I have no doubt that living with it has changed the direction of our lives. But believe me, that's not all bad.

I make the turn and wobble on into the bathroom. There I can relax because I have not hit the wall, or stubbed my toe, or tripped over the dirty clothes I failed to pick up. As I sit on my throne and things begin to flow, I am overwhelmed by the volume of gas that has accumulated in my digestive tracts. My food processing system has grown inefficient over the last few years. The nation is in the middle of a gas crisis, yet here I sit with more than I can deal with. Perhaps there is a career waiting for me as an overnight refueling station - providing combustible low pressure gas for a fleet of downtown taxies. Is this, I wonder, also a feature of Parkinson's disease? Or is it merely a part of the aging process? It is difficult to separate the two. Just as it is difficult to separate life with Parkinson's from the life that goes on all around me. Once this monster enters your life, there is no life without it; not for me, nor for my wife, nor my kids, now grown. They grew up with Parkinson's even though they don't have it. Their grandmother Channa had it from before their births, and they know what that meant for her, and how deeply it altered her life. They were three and four when I was diagnosed, and to be honest, I don't know what that meant to them while growing up. I sometimes wonder if they will spend their middle age caring for me, as Edna cared for her mother. Or worse yet, since Channa and I have both had PD; are they more likely to get it themselves? I hope not. The world around them will provide challenges big enough to keep them fully occupied without worrying about Parkinson's That is why I spend my time trying to find funding for the research needed to find the cure.

We know that the symptoms of PD are the result of an imbalance at the cellular level between the neurotransmitters acetylcholine and dopamine. Not enough dopamine results in Parkinson's loss of movement. Not enough acetylcholine results in Alzheimer's loss of cognitive functions. The imbalance in these two neurotransmitters is the result of damaged or dying cells in specific but different regions of the brain. We still are not certain of the pathology of these dying cells, but we have learned so much in the last ten years that I am confident we will find the answer. Whether that happens in my lifetime or not is not really a matter of chance. It's a matter of funding.

Ten years ago very few doctors were looking at genetics as the cause of PD, but with all the new work done on the human genome, we now know where to look for genetic influences. When I went on a family history search for signs of PD in my genetic heritage, I found almost none all the way back to the 17th century. The closest relative I could find with PD was Mabel Howell, an 87 year-old second cousin of my mother who was diagnosed nearly a dozen years after I was, and she swears she inherited it from me.

The balance between genetics and environment in the cause of Parkinson's is still uncertain. There's that word again, balance. I lost much of mine early, sometime in my 20s. It ran off somewhere along with my sense of smell. Considering the quality of the gasses enveloping me, that's not all bad. They don't call us old farts for nothing. I'm not sure what pricing structure would be required to make my refueling station a money-maker, but I know that, unlike the earth's oil supply, there's more where that came from. For now, I am relieved and I arise and return to our bed.

Edna sleeps peacefully, or perhaps she fakes it well in an effort to make it easier for me. She is always trying to make it easier for me, even though I sometimes intentionally make it harder for myself. And occasionally I unwittingly make it harder for her. I do not mean to, but I do. But for now, I go back to bed and blissfully fall back into sleep. And I dream.

Dreaming is an area where Parkinson's excels. My dreams are vivid, complicated, and sometimes require warnings for adult language, violence and sexual content. When I first started taking Comtan, I took it four times a day, along with my three daytime doses of Sinemet and Mirapex and with my Sinemet CR at bedtime. Within a few days I started having dreams that involved combat and I was constantly being thrown into situations where I was forced to defend myself. I would lash out in my sleep with my hands or kick suddenly with my legs. Well, even though Edna and I sleep on the far sides of a California King-sized bed (whatever that means...do King's automatically grow taller in California?) I really nailed Edna on a couple of occasions, leaving her bruised - an unintentional victim of domestic, drug-induced violence. Thankfully, when I stopped taking the Comtan at bedtime, this phenomenon stopped. It just goes to show that a useful, effective drug may have unexpected and unintended consequences. We all worry about the behavioral changes that sometimes occur with the dopamine agonists, but I think caution is advised for all drugs, and for their interactions.

This morning's dream was certainly g-rated. I dreamed of being here, speaking to you, engaging you in deep and meaningful conversation, and leaving you with spirits uplifted, and energized to take charge of your challenges. It was that wonderful kind of dream that says: The future can be better than the past. We can still move forward with our goals and plans. We just have to find the balance (there it is again!) between the unrealistic dreams of childhood, and the sometimes harsh realities of life, including such obstacles as war, global climate change, worldwide financial collapse and Parkinson's disease.

My childhood dreams included such unrealistic goals as Olympic track athlete, the first to solo Everest, and rocket-jockey to the outer planets. Okay, so I didn't make the Olympic team. In fact, I didn't even make the travelling squad on my college track team. And I haven't soloed Everest. In fact, I've learned enough to know that would be a very bad idea. And I haven't piloted any rocket-powered probes into deep space. But then, I haven't noticed anyone else getting beyond near-earth orbit for a long time. Those childhood dreams were based on the assumption not just that anything was possible, but that everything was possible. Experience has taught me that anything may still be possible, but not necessarily for me. I mean, a guy my age did recently achieve astronaut status when he took Burt Rutan's Spaceship One up over 62 miles. But with Parkinson's, I don't think I would put myself in that seat, even if it were offered. But I do honestly believe that our lives can still move forward. We can still make plans and set new goals. Just because I have Parkinson's or just because my 401K has tanked, or just because I'm turning 65 in a month, doesn't mean I'm giving up on my dreams. It does mean I should think about rescaling them in light of today's realities. What I mean is that when the scales of life are out of balance and the challenges outweigh the dreams 2 or 3 to 1, we have three options. We can try to reduce our challenges. We can try to strengthen our dreams. Or we can shift the fulcrum.

My reality upon waking is that my body is basically rigid, my Parkinson's symptoms are at their worst, and I am depleted of the medications I need to get back in gear. So I hit the bottle, well, several bottles actually. I start with the once-a -day Zelapar, and follow it quickly with my levodopa/carbidopa, my Comtan, my Mirapex and my Amantadine. Unlike my mother-in-law, I started on levodopa as soon as I was diagnosed - twenty five years ago. In fact, levodopa was my diagnosis. After 10 years of testing and failed diagnoses, the doctor said, Here, take this, and if you feel better, we'll have a better idea of what you've got. What I got was PD, but they just didn't believe it - even after the Sinemet worked its miracle. I knew with the first yellow tablet.

Twenty-five years later, it's still the most important drug for my PD. To use my favorite sports team as an analogy, that yellow tablet is still the Kobe Bryant on my medication team, but he needs Andrew Bynum, Derek Fisher, Trevor Ariza, Pau Gasol and Lamar Odom to be there with him in order to beat Steve Nash and Shaquille O'Neal. On my team, Sinemet is the MVP to small victories throughout the day, but it's still a team effort. This cocktail of medications gets me up and running in about 45 minutes to an hour, providing I don't exceed my self-prescribed limits of activity. If I try to do more than my body is ready for, my left foot will seize-up, and if I don't back off, the dystonia will soon attack my entire left side.

At breakfast I eat like a Spartan: a bowl of cold cereal, an English muffin with butter and jam, and whatever fresh fruit is on hand. Today there are oranges from one of the trees in my yard. My God, these are great oranges! Thank you, Lord, for giving us something so wonderful. In addition to the two orange trees, our little suburban yard has two lime trees, a lemon, an avocado and a fig. This house has been our home for thirty plus years, but it's also home to my favorite charity. My son's former bedroom houses the world headquarters of Team Parkinson. Edna and I were in at its founding in 1999 and have been Team Parkinson's national co-chairs since 2000.   Team Parkinson is our way of giving back to the community some of the blessings we have enjoyed in life.

As the medications kick in, I begin to feel more balanced, and less symptomatic; I can begin more vigorous activity.  Today I go back upstairs and put on my running shorts and running shoes and I do a few stretches. I was never big on stretching, but now I stretch before I run because I’m subject to muscle pulls and sore tendons otherwise. But there is another task before I run. I must walk the dog.  Our dog, Scrabble, provides my warm-up run.  We do about ½ mile each morning.  We start at a walk but by midpoint we’re jogging between his pee-breaks, and once he’s peed enough, we run the rest of the way in.  He would like to go the distance with me, but I can’t take the chance he’ll trip me.  So, I return to the house to drop off the dog.  He gets a biscuit and I get to start my morning run. My habit is to run about three to five miles a couple of days during the week, and longer with my training partners on the weekends.  I run a total of three to four times a week now, since I need recovery days almost as much as hard run days.  My recovery days are spent golfing with my friends whenever I can. I also love to ride my bicycle, but don’t like to ride alone. So I run as often as I think I should, ride whenever I have someone to ride with, and during the summers, try to get at least one major backpacking trip. This, or something like it, has been my schedule for over 25 years now, and I believe it has slowed the progress of my Parkinson’s and helped me maintain a high level of functionality.  Running has been the lever that moved me from a guy just trying to get through life, facing the challenges of PD, to an advocate for this community. 

There is considerable evidence that supports the notion that frequent strenuous, exercise is good for reducing the impact of PD, and may be neuroprotective and PD preventative. That gathering body of evidence includes a scientific article published just this month. The authors were using a mouse model of PD, and forced the mice to exercise regularly on a treadmill. Their conclusion was, “This study indicates that in spite of the drastic loss of dopaminergic neurons and depletion of dopamine in the severe chronic mouse model of PD, endurance exercise training effectively reverses the Parkinson’s like behavior deficits related to regular movement, balance, and gait performance.(Pothakos, Kurz, Yeun-Sum, BMC Neurosciences, 2009.) There’s that word again…balance. It is there in black and white; Endurance exercise will improve movement, balance and gait.”  Not only that, it will add balance of another sort. It can help build friendships, and engagement with the world outside. For me, it has had the additional value of providing both fundraising and inspirational opportunities.  Team Parkinson has provided the opportunity for many of my fellow Parkinsonians to take control of their lives and achieve significant goals.

I ran my first 5k just a few weeks after my diagnosis in 1983, and 13 years later, in 1996, I ran my first marathon. I ran the LA Marathon and finished in 4 hours and 29 seconds. The race winner had finished nearly two hours earlier. I found my wife in the crowd at the finish line and shouted to her, “Never again.” I had finished in the 3144th spot. I looked at Edna and said, “You must have felt like I was never going to get here.  There were so many people in front of me.” She answered, “Are you crazy? You did great. There are over 17, 000 people still out on the course.” 

This May I'll be running my 14th consecutive LA Marathon, my 20th marathon overall. My most recent marathon was in San Francisco last August. I ran my fourth fastest time, a 4:23:22.   Why do I spend so much energy on physical challenges like running or golf when I know that I’ll never be competitive because I have PD? 

Well, I’m not competing with the others in the race. I’m competing with the Parkinson’s that would change who I am.  The competitors I face each day are sloth, inertia, pain and depression. They are the four horsemen of my Apocalypse.  Their goal is to drag me down with ease and comfort, with safety and self-satisfaction.  I believe we were designed to work hard and take risks; to challenge ourselves and to keep growing at all costs.  I’m only alive if I’m still learning.

How do I spend the rest of my day?  I try to make myself useful. When I’m not running or golfing, I sit at my computer and write – stories, essays, perhaps another book, but mostly answering emails and working on presentations. As you can see, I thoroughly enjoy speaking at Parkinson’s support groups and conferences.  One of my personal philosophies is that you can’t make a difference if you don’t show up, so I try to be wherever I am invited. I seldom turn down a request to be at a support group or just be at someone’s home to help them through a rough patch.

When I’m not busy with Parkinson’s activities, I try to make furniture, and turn wood on my lathe. Believe me, these are skills I’m learning now.  I’m still learning how to work with my tools, and trying to learn what the wood can give me. I’ll take a chunk of tree - trunk or branch - and try to shape it into something useful or beautiful. In the same way, I hope to shape my life into something useful. My goal is to live my life to the fullest while trying to make it meaningful to others: balancing the duties with the pleasures that define a life well-lived.  I may not make it to the outer planets or the top of Everest, but there are plenty of smaller mountains left to climb.  I can still get on a plane and come here to encourage you; to help you find in this conference the information or inspiration you need to get going on your own goals and plans. As I’ve told friends over the years, I view PD as an inconvenience in my life.  When it interferes with something I like or something I do, I choose a new activity or direction to maintain my intellectual and emotional balance. Because, at the end of the day, I’m not going to be judged by what Parkinson’s did to me, but rather by what I did for the world. What we need, in the end, is to get our lives back in balance – balancing our inward needs with our outward responsibilities; to take care of ourselves first in order to be strong enough to take care of others in our families and in our communities.

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