The 14th Annual USC Parkinson's Disease Update at the Pasadena Hilton, Saturday, April 2nd Speech by John Ball
Speakers included Dr. Stanley Fahn, Director of the Movement Disorders Division at Columbia University, NY., Cheryl Armstrong, RN, MA, CCRC at the Keck School of Medicine, USC and Mickie Welsh, RN, DNSc. at the Keck School of Medicine, USC.
The following is the speech by John Ball:
Good morning and thank you for the opportunity to speak to this Parkinson’s community. I know it’s appropriate to start a presentation with a joke to lighten up your mood and mine, but to be honest I’ve never been comfortable telling jokes, so I’m going to read a little story from a friend of mine with PD. Her name is Nancy Wise and she lives in Charleston. So, in the words of Samuel Taylor Coleridge, I ask you to willingly suspend your disbelief as I become a 5-foot, 1-inch former sixth grade teacher from Charleston, South Carolina.
Nancy writes: Today I had a true Parkinson's Moment and I decided to share it with you all. It all began when I ordered some Corelle soup bowls (I've switched to Corelle because I drop things a lot and it usually doesn't break.) They were delivered today.
The postman left the box behind a planter (the post office and I have worked this out.) From there I can drag things into the garage so they can be opened and the packing materials can go straight into the BIG, GREEN, PLASTIC, CITY OF CHARLESTON GARBAGE CAN. The can is 54 inches tall and, since I'm only 61 inches tall, it is a challenge to work with. Well anyway, I decided to lift the cardboard box up onto the corner of the garbage can and open it up there so that all those little green Styrofoam peanut-shaped things can't escape and make too big a mess.
First of all, I had to balance the box and get through the tape and wrapping. I SHOULD have gone upstairs and gotten a box cutter. Well actually, I should have stopped while I was ahead but I still have delusions that I can do things that other people wouldn't even consider. Anyway, I've seen my husband open boxes like this with a mere car-key so I figured that should work for me, too. Sometimes I'm absolutely stunned at my own stupidity. Keep in mind that I'm past my tenth year of Parkinson's disease and I therefore have all the grace and coordination of a duckbill platypus with two left feet. I struggled mightily and got part of the box open but since this was pretty tough to do, I decided to tear the rest of it open so I could get rid of the packing before I lifted the 8 soup bowls out and down. With this in mind, I very cleverly tilted the box sideways and downward, resulting in the 8 bowls (carefully wrapped with bubble plastic and tape) sliding right out of the box and down the inside of the garbage can, ending up ALL THE WAY AT THE BOTTOM of the can. By then the can was tilted somewhat sideways so I tried to reach in and grab the package of bowls. I'm short, my arms are short, and the garbage can is really tall; that means I couldn't reach the bowls. Figuring I wasn't yet defeated, I stuck my cane handle in there and tried to snag the package. I ended up just sending it further under the garbage. I returned the BIG, GREEN, PLASTIC, CITY OF CHARLESTON GARBAGE CAN to its upright position and then, standing on my toes (which is pretty dangerous when you consider that I'm having more and more balance problems), I leaned over the edge of the CAN and stretched forward with all my might, trying to reach the bowls.
And then it happened, of course. I lost my balance and slid head first into the can. Frankly I had a terrible time trying to get back into an upright position, particularly since the can is tall but not that big around. I finally managed to get myself upright but THEN I couldn't get out. I was in my ivory silk blouse and Carolina Girls trousers, deep in assorted banana peels and tea bags, and a few things I couldn't identify. I also couldn't figure out how to get out of the garbage can.
Having few choices, I burrowed back into the mess and retrieved the soup bowls, actually being able to set them safely on the top of an old bookcase, located next to the can. But that was as far as I could get. By now it was almost 5PM and my husband was due to arrive home (and into the garage) within the next few minutes and I was stuck upright in a BIG GARBAGE CAN. Not only was I unable to get out, but I was a mess. The only thing I could think of to do was to get as much garbage under me as possible, allowing me to grab at something (in this case a rack of gardening tools) and then try to pull myself out.
You know how little body strength the average person with Parkinson's has so all I succeeded in doing was tipping the plastic can somewhat sideways and then sliding down it until it was flat on the floor and I could crawl out. In the process I pulled down all of the gardening tools PLUS most of the wall mounted rack. When I finally crawled out, I had to get to my feet, something which is a virtual impossibility unless I have a handicapped bar nearby. By the time I managed to pull myself up it was 5 minutes after five and Curt was due any minute. Scooping up as much stuff as I could, I stumbled and bobbled around picking up the garbage and straightening the garden tools. Because the bolt had been pulled totally out of the wall on one side, it was hanging by the only remaining bolt. I grabbed the other bolt and pushed it back into the wall, leaving the rack bent and unsteady but more or less in place. I managed to get the garden tools near their appropriate places too and then, using the last of my strength, got to the elevator so I could get upstairs and clean up.
I had just gotten to the second floor when I heard Curtis' garage door rumble open, followed by the sound of things crashing, banging and metal things falling. Apparently the vibrations of the electric garage door had caused the already unsteady rack to fall. I hid my clothes in the bottom of our clothes hamper and jumped into the shower, not even waiting for the water to warm up. Minutes later Curtis came into the bathroom muttering and asked why I was taking a shower so late in the afternoon. Cleverly avoiding a lie, I responded by asking him what in the world was all that crashing and banging that I had heard? He shook his head and said that all the garden tools had fallen and the bolt had pulled completely out of the wall and he was going to take it back to Home Depot and demand a refund. Then he stomped off to get himself a glass of tea and read his paper. I had to wash my hair twice to get the smell out and then got dressed and grabbed the clothes hamper and headed for the washer.
Well, I got away with it -- I guess -- but I just hate it when I do something really stupid like that. I've decided that one of the less recognized symptoms of PD is rampant stupidity. Well actually, I've always done some pretty questionable things but this has to be the pinnacle of my career. So, that's what happened -- just the way I told it. I hope all of you had a good day and didn't do anything terminally stupid. I'm going to finish cleaning the kitchen and go to bed. I'm exhausted. Everybody take care. Nancy in Charleston.
I guess you could call that a day in the life of a person living with Parkinson’s. Nancy is like many of us PWPs – 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, I want to be like Nancy and fail by reaching too far 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 tall mountains, and flying to the stars. Well, I was never an Olympic-level athlete, but I did run for my high school and college. 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. Those activities became important aspects of my personal pursuit of happiness and they were all put at risk by the early intrusion of Parkinson’s disease into my life.
My Parkinson’s symptoms began in my 20s, although I wasn’t officially diagnosed with PD until I was 39. Of course there’s 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 they can be overwhelming for someone with a chronic degenerative illness. I feel very blessed to have come safely through those challenges.
I know now as a 60-year-old that I will not reach the stars, but I need not blame that on Parkinson’s. And I know that I’ll never conquer Mt. Everest, but I’d be lying if I blamed that on Parkinson’s as well. I haven’t completely abandoned the idea of participating in the Senior Olympics, so there may still be a chance on that dream. I have learned that by gathering my resources I can still scale smaller mountains, and by planning well and training hard I can still run marathons. 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.
Last fall my older brother Jim and his girlfriend Nancy and I climbed Cirque peak, a 13,000 footer in the Sierra Nevada’s of California. By climbing together I was helping Jim and Nancy prepare for climbing Mt. Kilimanjaro, the tallest mountain in Africa. And this spring with my friends Mark and Jordan Saxonberg, and Doug and Mimi MacGlashan, I ran my 10th consecutive Los Angeles Marathon, and finished in 4:53:03, which was my fastest time in five years. By doing so I helped 20-year-old Jordan finish his first marathon ever. By the way, Mark and Doug are preparing for their first ultra-marathon run, which is what they call anything over 50 kilometers or 31 miles. I won’t be joining them but I’ll be helping them prepare. You may wonder how this is possible since I’ve been living with Parkinson’s for over 30 years. Well believe me, there are times when I wonder as well.
I don’t want this talk to be strictly about me, so I asked my friends on the NPF Open-Forum what they would want to say - and three or four themes came out quite clearly:
While I feel very comfortable with the care I receive here at USC, many on the forum felt there is an appalling lack of knowledge about Parkinson’s disease among the majority of health care professionals. Many family doctors don’t know how to recognize Parkinson’s, or how to treat it if they do recognize it. Even many neurologists have a limited knowledge or an outdated understanding of how Parkinson’s is experienced by the patient. One cannot be assured there is a genuine understanding of the complexities of this disease without talking to a Movement Disorder Specialist. Personally, I didn’t find myself in a good situation when I was first diagnosed and went nearly a decade with a neurologist who, by the time we parted company, knew less about the disease than I did. Had I been more severely impacted by Parkinson’s, I don’t believe he would have provided any real help. It wasn’t until I came here to USC that I began to build a collaborative approach to treating this disease.
Their second concern was about how they were treated. All too often they felt a painful lack of sensitivity toward their emotional and psychological well-being, particularly on initial diagnosis. They certainly wanted to make clear that doctors and nurses need to consider the whole person when talking with their patients. We are not just containers for the disease we bear. For example, one PWP was told that she couldn’t participate in a PD clinical trial because her “off” times weren’t severe enough, “But” the nurse assured her, “I’m sure that in 6 or 8 months they will be.” Now wasn’t that a heart-warming message to send.
They also wanted to make sure I talked about how isolating Parkinson’s is. This disease is like a net thrown over us that restrains us and shrinks our world into ever smaller circles of constraint. It is this continual sense of loss that is so depressing for many Parkinson’s patients: loss of skills, loss of mobility, loss of friendships, loss of jobs, loss of communication, loss of participation in daily life. One of my web-friends said “It is like standing in quicksand. You are never able to take a firm stand because you never have a place to plant your feet.” You fight to keep your losses to a minimum; you resist each new symptom as long as you can, but you reach a point where you must accept these losses and try to move on. But moving on is just what you can’t do. You’re stuck with it. What is most difficult to accept and get on with is the sense of diminished value, of losing not only your abilities, but also your sense of worth in this world. With that loss comes a lot of guilt; you live with the knowledge that you are the one responsible for taking these things away from those you love. You lose your ability to hold a job; you lose your ability to hold your life together; you may even lose your ability to hold your children or grandchildren in your arms. My friend Dan is in his early 40s and has had Parkinson’s for nearly ten years. He is also a new father. He’s worried that his tremors are occasionally severe enough to make him reluctant to hold his baby daughter Lucy in his hands. He is concerned that she will think him a cold or distant father rather than a vital part of her life. How will this play out over the next 20 years as she grows up?
Finally, they wanted me to remind you that time is marching on. We have been hearing about the potential breakthrough to a cure for several years now. Ten years ago Dr. Abe Lieberman said that he thought a cure was “just around the corner.” And Dr. Fishbach, then head of NINDS, said in 1999 that he was confident that, given the proper funding for NIH, we could find the cure in 5 to 10 years. And the NIH developed a funding plan just to do that. Well, here we are folks; it’s 2005 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? Have the wars in Afghanistan and Iraq brought us closer to security from terrorism at the cost of putting off a cure for Parkinson’s? Is that a good deal for America or for our children? Leaving the politics aside, I must congratulate those of you here at USC and at many other fine universities and hospitals across the country and around the world for the progress you are making. I personally feel we are closer than ever before to understanding the full impact of Parkinson’s on our lives, and how to deal with it in treatment, and someday find a true cure.
Those are the concerns of my friends in the Parkinson’s patient community, and I share them with you not to shame the politicians who set our national priorities, nor to blame the medical community for not fixing things fast enough, nor to demand that more attention be paid to the wide-spread devastation this disease brings into our lives and our families. I share them because to my knowledge this may be the first time a patient has been asked to speak at this symposium and I feel an obligation to let these other voices be heard. For so many years we have suffered this disease in silence; we lost our voice to this disease, both figuratively and literally. Well, I want you to know that I take this opportunity to speak today very seriously. I’m glad you’re here to share it with me. I’ve lived with Parkinson’s for over half my life, over 30 of these 60 years, and what have I learned from it?
Lesson number 1. I am not defined by my disease, nor am I a victim of it. Parkinson’s is 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’s just my particular challenge in life and I choose whether to be victim or 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 is: what am I going to 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, not overeating, not drinking to excess, getting as much sleep as possible, and all the other good habits that healthy people live by. It also means learning which foods impact my Parkinson’s medications, and when I need to take my meals so they do not interfere with my medications. 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 even more pain. 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.
I also decided to become part of a community. This took me some time to figure out, because I thought I was pretty 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. Every one around me at home and at work was dealing with it as well. None of us with Parkinson’s 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 would need a lot of care on their part as I grew older. So many questions that they may be unable 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? 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 give, and what I discovered was that I had so much more to learn. It wasn’t until I connected with other people living with Parkinson’s that I began to truly understand what this disease is and what it does to people. Once I connected with the NPF Open-Forum on the Internet, I began to realize how much more there is to learn about this condition and to learn it I had to know many, many more people with PD. Being part of a community helps me every day in so many ways; it allows me to talk freely about personal issues that I sometimes don’t even want to mention to my wife. It allows me to gripe if I need to and know that others will understand and not hold it against me long-term. Most importantly, it gives me the opportunity to help others with PD. Each time a newly-diagnosed patient joins the Forum, we old-timers recognize the fear, anger and denial that we all went through to one degree or another. We can correct some of the misinformation and disinformation they have gotten from the popular press, or their non-specialist medical contacts. We can comfort them with the example of our own lives with 20 years and more of living successfully with this condition.
The third thing I did was to find a cause to live for and dedicate myself to. It wasn’t enough for me just to join this community - I wanted to become an advocate for it. I learned to become an advocate through the Parkinson’s Action Network and that lead me to Team Parkinson. The goal of Team Parkinson is to raise awareness of the impact of Parkinson’s on society and raise the money needed to find the cure for Parkinson’s disease. In addition, it’s an opportunity to inspire others with Parkinson’s to take on challenges of their own. I think we’re doing that with some success.
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 told me to get rid of the motorcycle. I did so because I didn’t know any better. Ten years later I was 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 giving up the more challenging aspects of life and think they are being kind to you, when in reality they are taking the joy from your life. I learned to decide for myself what I can or can’t do. That doesn’t mean just ignoring the advice of my doctors or my family when they say I should do something, because some things are risky because of PD, just ask Nancy about opening a box of bowls.
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 60, 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. Let me give you an example: The goals of Team Parkinson are to raise awareness on the impact of Parkinson’s on society, and to raise money to fund the research for finding a cure. I have to be willing to do whatever it takes to make people aware of what Parkinson’s is and how much it costs us all…loss in productivity, cost of care, etc. So I retired at age 58 from a career I loved, because I knew I had to spend more time helping those with PD. I couldn’t do that and do my job properly at work. I left Honda and let others take over the responsibility for its future so I could help Edna manage Team Parkinson. I didn’t make it any easier on her, because by working together we’ve been able to grow Team Parkinson from a single annual event to a year-round organization. And I feel an obligation to be there when we have events in San Francisco or Spokane or New York. Parkinson’s needs a face to get noticed. Thank goodness that Michael J. Fox, Muhammad Ali, and Janet Reno are willing to admit their condition and make Parkinson’s more visible for all of us who live behind the PD mask. I have to be willing to do the same, even if no one notices.
Lesson number 4. I have to be willing to grow and take 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 dealing with PD. Primary tools include my strength and fitness, my wonderful wife and kids, and my management skills acquired over a lifetime of work. They work just as well at managing PD as they did at managing a department. My PD tool kit also includes my marvelous Doctor Lew, in fact my whole wonderful team here at USC, Dr. Mickie Welsh, Dr. Michael Jakowec, Dr. Giselle Petzinger, Dr. Jennifer Hui, Dr. Beth Fisher, Gloria, Kathy and all the rest. My kit also includes my medications and my understanding of how they work. Another vital tool is my knowledge of this disease, because I think it is important to know as much as I can about my life-long companion. With all these tools at my fingertips, how can I not succeed?
Lesson number 5. Well, I probably don’t need to remind you that Parkinson’s can be a devious companion to deal with, and he doesn’t always come straight at you. Depression can strip you of your most comfortable tools. It can take away you logic and your perception of reality. It can fog 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. I have been there. I have felt the urge to give up, to give in to the longing for release in one long swan-dive from some place high. Don’t let it do that. You can recover… it just takes some new tools in your kit. You may need to expand your doctors’ circle to include a psychiatrist or psychologist. You’ll probably need to include an anti-depressant in your medications list, and you’ll need to enlist the help of friends and family to correct your misimpressions and help you see the reality of their love for you. And you have to cast aside those feelings of guilt and unworthiness. We aren’t to blame for having PD, and we aren’t to blame for being depressed. It’s just another symptom of this disease. But we do have to take charge of our recovery. We are responsible for our own happiness, and we are still responsible for making our lives worthy of the gifts we’ve been given.
Lesson number 5. Looking at it realistically, I would have to admit that Parkinson’s 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 is at stake. I might have missed the many incredible friendships and the truly wonderful people I have met in this community. You should realize that you are very special people - you are every bit as wonderful and powerful as the Wizard of Oz. And you can accomplish extraordinary things just like my friends in Team Parkinson: Mary Yost, Florence Woolery, Nick Comantes, David Schneider, Steve Evans, Moses Remedios and Gail Edgar – all of whom have Parkinson’s and yet have finished all 26.2 miles of the LA Marathon. I must also acknowledge those who ride in the Bike Tour and run or walk the 5K on marathon weekend. You each inspire me to keep doing what I’m doing in the hopes it will make a difference someday. Thank you for allowing me to be here today. If there’s time, I’d like to answer any questions.