Creating Your Own Personalized Plan to Live Life to the Fullest With (or without) Parkinson’s
M. Scott Peck starts out his monumental work, The Road Less Travelled, with three powerful words, “Life is difficult.” Difficult does not translate to bad, it just means that sometimes in life things do not come easy. Dealing with Parkinson’s is difficult. That sure is an understatement if I ever heard one.
I describe myself as an inspiring, insightful, informative and oft-times humorous speaker who just so happens to have had Parkinson’s for over a decade. In my life BP (before Parkinson’s), I was an attorney, officer of a listed public corporation, and avid athlete. In my life WP (with Parkinson’s), I am an inspirational speaker, author of several books, faculty member of the University of Louisville, guest commentator on CNN Headline News, Chair Emeritus of the Kentucky Make-A-Wish Foundation Board of Directors, and, most importantly, Bernadette’s husband.
I present here a novel and all-inclusive approach to living life to the fullest whether or not you have Parkinson’s disease in the form of nine daily action steps.
First, you must do your own research. Whether you prefer asking experts, attending Symposiums, joining Parkinson’s Associations, searching on the internet, or going to the library, you have complete and total responsibility for your own well-being. Others may assist you in your mission, but, as Harry Truman said so famously, “The buck stops here.”
Research entails learning as much as you can about your disease, illness, or injury and bringing information TO your doctor. Information exchange needs to be a two-way street between you and your doctor. Do not rely solely on your doctor to be the be-all and know-all. If fact, research different doctors before you choose one.
Research different medications. Even I, after over a decade of research and dozens of Symposiums, still benefit from research.You need to continually do your own research, attend Symposiums, and discuss what you learn with your doctor.
You should also research different support groups. Some are positive and helpful. Others could be called “bitch sessions” and will bring you down. As my wife likes to say, “Follow happy people.”
Finally, you need to research and become aware of the many emotions that you will likely experience during your adversity so that you can move more quickly through each stage. What I call the “emotional rollercoaster.” With Parkinson’s disease (and these can come in any order), you may experience shock, disbelief, denial, sadness, anger, isolation, awkwardness, isolation, disconnectedness, confusion, fear, hopelessness and especially depression.
“When I was diagnosed with Parkinson’s disease, I was told that the chemical imbalance in my brain due to the depletion of dopamine would result in depression. They were not kidding. I had never suffered from depression and had always had a pretty positive outlook on life. In fact, I could never understand why those who did suffer from depression couldn’t just will themselves out of it. Wow, was I wrong. I was driving the first time depression hit. Like a ton of bricks. I felt like I was in a deep, dark hole with no hope. No point in continuing to live. I just wanted to curl up into a ball and cry. It lasted twenty minutes, but it felt like twenty hours. When I came out of it, I felt the repercussions the entire day. I learned the true meaning of empathy. The next time it hit was two weeks later. I felt the same, but I knew that it would subside. A horrific experience! But I might as well learn something from it. What did I learn? Compassion. Empathy. A better understanding and appreciation of what people with depression go through.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
As easy as it is to say, it is just as hard to do, you need to simply work through each of these stages and do what it takes to “get over it.” Whatever it takes. There are limitless alternatives. Therapy. Special diets. A plethora of different exercises. Eastern techniques. Medication. Whatever works for you.
Second, you have to limit yourself to eating only healthy food. Don’t give yourself a choice. The quality of the remainder of your life depends upon it. Similar to a lifelong smoker who finally is able to stop smoking after being diagnosed with lung cancer, use your diagnosis to motivate yourself. Your quality of life depends upon what you do AND DO NOT put into your body.
Simply put, eat clean whole foods. Vegetables, especially green ones. Use the parameter of your grocery store as a good guide. When I say whole clean foods, I am referring to foods that haven’t been processed or added with chemicals that the body does not use as fuel. The “super foods” loaded with antioxidants, vitamins and minerals. Read food labels. If you can’t pronounce some ingredients, you should not put it in your body. Find a farmer’s market, they are popping up all over.
You can educate yourself on the dangers of sugars and how it will, not only decrease the quality of your life, but also be a reason for increased fatigue and other illnesses. Without question, you should have already had the last soda you will ever drink, diet or otherwise. NO artificial sugar substitutes. Period.
Eating certified organic foods will also lower toxic chemicals you put in your body. When it comes to animal protein, you need to watch the documentaries like “Forks over Knives” and “Food, Inc.” You may not ever eat meat again. I have also chosen not to eat meat because it may block the absorption of my medicine into my body through my intestines.
Being conscious of what you are putting in your body will help you FEEL BETTER, INCREASE YOUR ENERGY, AND EVEN IMPROVE YOUR MOOD.
Third, you need to exercise (almost) every day “beyond” your comfort zone. If you are like I was, and most Americans are, you are not fit. Therefore, you need to not just lose a few pounds on a fad diet, but actually “transform yourself.” Not overnight. Not next week. Not even next month. It depends upon how out-of-shape that you have let yourself become. I’m not talking about your weight. The focus is on fitness. When I made the commitment to myself to transform myself, I was about 215 pounds and just under six foot tall. Not too bad compared with most everyone I knew. But “not too bad” is not good enough when you are dealing with a progressive disease, like Parkinson’s. To improve the quality of my life for the rest of my life, I needed to get fit.
As explained above, first comes proper nutrition. It has been said, and I believe is true, that 80% of healthy living is what you put in your body. The rest comes from exercise. For me, I started my fitness plan on the treadmill, then moved up to the elliptical machine, then on to the spin bike. To get where I needed to be, I needed to schedule and commit to two, sometimes three workouts a day. Eventually, I was alternating between boxing fitness, kettle bell strength training and hot yoga classes once per day virtually every day (I take a day off from time-to-time). I unintentionally reduced my weight to 180 pounds and am healthier now, twelve years into Parkinson’s, than I was before I developed the disease. Remember the 3 “S”s: Stretching, Strengthening and Sweating.
Fourth, you need to find the strength within yourself to do the things required to live your life to the fullest with Parkinson’s or any other disease, illness or serious injury, including eating right and exercising on a daily and permanent basis.
There are many terms that describe what I am talking about. Drive. Desire. Determination. Discipline. Commitment. Inner Strength. Every one of us has the power within us. Tap into your power. No one can do this for you. Not your caregiver. Not your family. Not your doctor. This is no small task. It may even serve to define you as a person. What are you made of?
An example of inner strength for me was when I decided to cut down the trees myself on my five-acre lot to clear space for a house and driveway.
“I was forced to give up softball and tennis due to developing Parkinson’s disease and wanted to prove to myself that Parkinson’s could not prevent me, at forty-six years old, from doing something physically exhausting. My end-vision was a perfectly cleared footprint for my house. I could see myself in the house, hear the sounds of the wildlife and smell the trees. So, I bought a cheap chainsaw and returned it. Bought another discount one and returned it. Then bought a Stihl chainsaw and loved it. I had some friends teach me how to use it safely, if that is possible, and got started. It took me nine months of working nearly every weekend to take down and cut up at least fifty trees. Success. Had some scary moments along the way, but what true success does not have a few of those? What came to mind several times was the film Monty Python’s Holy Grail when ‘Sir Robin ran away.’ I definitely ran away a few times. Some trees have a mind of their own. Sometimes the saw blade all of a sudden was part of the tree and wouldn’t budge. In the end, the sense of accomplishment and success was exhilarating. But I also enjoyed every second along the way. From the one time that my sixteen-year-old son ‘helped’ me by moving broken branches as slowly as any human being could possibly move them, to sitting on a stump drinking an ice- cold beer when I was finished for the day, I enjoyed it all.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Pick a day. Set it in concrete. Start your new life on that day. No turning back. No rationalizing. No procrastinating. You are in it for the long haul. Every journey begins with the first step. I implore you to take that first step. Your life depends upon it.
Fifth, stay mentally active and take care of yourself. For example, do part-time what you used to do full-time. Write a book of what you have learned in life. Get more rest. Don’t be ashamed to take a nap. Spend more time with family. Reduce stress. Just say “no.” Don’t over-commit. Simplify your life. Play euchre. At the very least, read books, watch movies, devour documentaries (one you need to watch is entitled “Happy”) or just do something as obvious as crossword puzzles.
Sixth, identify, recruit, nurture, and develop your support system. I like to call it my tribe or village. Family and other Caregivers. Health Care Professionals. Parkinson’s Associations. Exercise Partners. Financial Planners. Even attorneys. If you are still working, you should talk to an employment attorney about whether to, and when to, disclose your condition to your employer. You need to sign up for as much long-term disability insurance as your employer offers. You need to at least know the legal landscape of the social security disability system and Medicare.
Seventh, have a positive attitude. You have a choice. You can get into the fetal position in the corner of your bedroom, give up and give in to your condition or you can decide to take it on head on. You’re choice. No one will fault you if you decide to give up. But if you are going to continue to live, you need to go all the way. There is no half way. All-in. This begins with exuding a positive attitude. Whether you feel it or not.
What is a positive attitude? It is a life perspective that maintains a high enough level of awareness to seek out, search for, and dig deep to find a lesson, a positive side or outcome from any given event. It can simply be being more empathetic. It is also a decision to not commiserate or wallow in your own or someone else’s misery. There is a real difference between empathy or sympathy and enabling.
“I was diagnosed at forty-two years old with Parkinson’s disease. It was a shocking and stunning development. I had always been an avid athlete; sports had always been a big part of my life. I played softball in Texas and I was actually the shortstop for one of the Texas State Championship softball teams. So, to some degree, I measured self-image, self-worth, and myself by my athletic ability, and then, all of the sudden that was taken away from me. Because, with Parkinson’s, I can’t throw a softball or baseball; I can’t shoot a basketball; I can’t serve a tennis ball. There were other symptoms: hand shaking, an expressionless face, not blinking, and a softer voice. It was an interesting choice to become an inspirational speaker with these issues. It was a ‘welcome to your new reality’ situation. I can’t say that it didn’t throw me for a loop, because it did; it would throw anyone for a loop. It’s what I’ve done with that since then, and that is developing my inspirational speaking business. I speak on Parkinson’s; I speak about my daughter who has cerebral palsy and how it is to be a care receiver as well as a caregiver, and, in fact, caring for the caregiver and caring for the care receiver. I speak on how to be successful at Living with a Life-Changing Condition. Entitled, no surprise here, You Ain’t Dead Yet.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Inspiration is everywhere. Go to a children cancer hospital and visit the patients. Watch the ESPN 30 for 30 Short on John Tuggle. Watch the ESPN 30 for 30 on Maurice Clarett. There are hundreds of courageous people and stories out there to find inspiration if you are looking.
“Another example of how a positive attitude is essential and can be inspiring to others is my daughter’s decision to become a cheerleader in the sixth grade. She had been reluctant to get involved in the fifth grade, because she was concerned that her cerebral palsy would prevent her from doing the cheers. She was also concerned that other children would make fun of her if she fell or could not do the cheers properly. I was surprised when she announced that she was going out for the cheerleading team. As a parent, I never want my children to be hurt, whether physically or emotionally. I was very concerned until I saw how excited she was to be a cheerleader. The smile on her face made up for any missteps. The next year, she announced that she no longer wanted to be a cheerleader. My reaction was a mixture of relief and disappointment: relief that she would no longer be exposed to possible injury or teasing; disappointment that she may have given in to the naysayers. To my amazement, she finished her announcement that she was trying out for the girls’ basketball team instead. The power of a positive attitude is inspirational.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Impossible is a temporary thing. Wasn’t it thought to be impossible to put a man on the moon? Who would have thought that you would be able to talk into a small device and have a conversation with someone on the other side of the world? What about putting electrodes into your brain to control the symptoms of Parkinson’s disease.
“I once heard a story that I hope is true. It involved a college graduate student majoring in math who was late to class. He dutifully copied down the two problems on the blackboard upon his late arrival. When it was time to do the homework problems, he found them very difficult. Being a straight A student, he was in a panic and stayed up all night working on the math problems. Finally, near dawn, he solved the first one. He ran out of time and, dejectedly, went to the professor’s office and slid the homework under his door with a note of apology for being late for class and not solving the second homework problem. He was so depressed and embarrassed that he drew the shades and went to sleep. About 4 p.m. that afternoon, there was an urgent knock on his door. He was surprised to find the chair of the math department at his door. He had been late to class, submitted an incomplete homework assignment, and slept though class that day. The only thing he could conclude, seeing the chair at his door, was that he was being expelled. Much to his surprise, the department chair excitedly explained that the student had done the impossible. He had solved what was thought to be an unsolvable math problem that stumped even Einstein. You see, he missed the start of class where the professor informed the class that the problems were impossible to solve. Take the word impossible out of your vocabulary.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Living life to the fullest with Parkinson’s is NOT Impossible, but, in fact, very possible if you live by your daily action steps.
The mind is a powerful force. Did you ever consider why clinical trials are required to provide inert or sugar pills to half of the participants? It is because during the first few months both the participants who are taking the trial drug AND the ones that think that they may be taking the drug, but are not, receive some positive results. What else can that be but the mind performing its magic?
Eighth, have a new perspective on life. What I call, the “silver lining” of any life-changing adversity. If you look hard enough, you can find it. For example, I have dramatically changed my life since being diagnosed. I have developed more lasting friendships, especially in the PD community. Being diagnosed was a humbling experience for me. I have become more loving, kind and compassionate. I was, quite honestly, pretty arrogant BP (before Parkinson’s). You might have even called me a jerk.
Being diagnosed has also given my caregivers the opportunity to demonstrate how much they love me though actions and not just words. On the flip side, I have been provided the opportunity to express sincere appreciation to my caregivers.
“My son once asked me, ‘What was worst thing that ever happened to you.’ After thinking about it for some time, I said, ‘Nothing; she didn’t die. Your sister didn’t die.’ His sister was born with birth defects and given a 40 percent chance of survival. I imagined her funeral in detail, as excruciating as it was, maybe to prepare myself should I be forced to really experience it. It ended up being the best of both worlds; I got the perspective of what is truly important in life without the seemingly unimaginable pain of burying my baby. Sometime later I asked a good friend the same question. He said, ‘My divorce.’ I reminded him that, if it were not for his divorce, he would not have met and married his current wife, and had his daughter, who is the light of his life. My follow-up question to him was, ‘Was the divorce the worst thing that ever happened to you, or the best thing?’ Often life experiences, however horrible at the time, often turn out to be valuable ones.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Another more personal example is the emotional numbness that many of us with Parkinson’s experience. After all, dopamine is the pleasure center of the brain. Everyone has some reduction of the production of dopamine as we get older; however, those of us with Parkinson’s lose dopamine at a faster rate. All this said, the result is that I experience emotional numbness, at times, I feel nothing, no love, no sadness, no anger, no joy, nothing. It is quite scary. You cannot trust your emotions. Do I really not love this person or is it dopamine deficiency? That is the dark cloud. The silver lining is that I have heightened the memory center of my brain to include the memory of the actual emotions that I experienced at the time: the first time I laid eyes on my wife, the six days together in our first seven days, the site of her walking down the steps of our home in her wedding dress, our honeymoon, and so many other wonderful times when somehow the euphoria of the moment or adrenaline released overcame the lack of dopamine. I can go back. Having this new found ability certainly qualifies as a silver lining that I would never have developed absent Parkinson’s.
Ninth, before it is too late, you can contemplate and fulfill your life’s purpose. Why you were given life? Why you were put on this earth? The answer may, or may not, have to do with your life-changing adversity. For me, it is to inspire others to not be afraid or lose hope. I believe that each one of us must have faith in yourself, faith in others, faith in your higher power, and faith that your life has PURPOSE.
Faith in yourself goes back to your inner strength. Faith in others includes your care partners, both family and health care professionals.
“There is a great book by Gary Zubov entitled, The Seat of the Soul. The premise of the book is that our soul lives on after our current existence ends. This existence is labeled our personality. Each personality exists to obtain certain experiences and learn from them. Young souls have not had many personalities, while old souls have had a substantial number. My best friend from college battled cancer for some time. I was able to stay in touch with Brad even though he was in Florida and I was in Kentucky. When I was not visiting him, we communicated by phone and text. I felt compelled to share parts of Zubov’s book with him. The book asserts that, if you do not learn what you are intended to learn during a particular personality, you are destined to repeat that personality and not move on to the next one. This revelation provides me some comfort now that I am getting older, and every day inching closer to death. As you have read in this book, I have gone to a whole new level to make sure my life has purpose. My purpose, in a nutshell, is to support my family and help others through my words and actions. With Brad, his only concern was whether he made a difference. Did his life have purpose? I know it did to me and my observations were that it did to his parents, sons, friends Kevin and Shari, and even his ex-wife (who came to visit him with their sons the Christmas before he passed). Having a purpose can be as simple as a kind gesture; you may have no idea the effect of such a gesture. Brad’s life had purpose. I met Brad the first day of my sophomore year in my new dorm. I enjoyed my freshman year, but never felt like I belonged. I went to a state school in Massachusetts even though I grew up in New York. Many of the students had their friends from high school, and had little need to make new friends. At first, the new dorm felt the same as the one I was in freshman year, and I was ready to quit school. Then I met Brad. He was clearly the leader of the Attleboro, Massachusetts, group. I will never forget how he included me in their group from the start. It was a small gesture that meant the world to me. I told this story to him the night before he passed, and at his memorial. I am blessed to have known him.” Excerpt from DECIDE Success: You Ain’t Dead Yet.
Do something purposeful. You don’t have to be an inspirational speaker. Volunteer for clinical trials. Fund research. Raise money for Parkinson’s groups. Donate your time to your local support center. There are limitless possibilities.
“My mother had said to me hundreds of times, ‘Everything happens for the best.’ Almost a year after I was diagnosed with Parkinson’s disease, sitting in her living room having casual conversation, her favorite commentary changed. ‘Well, remember John, everything happens for a reason.’ What had always been the ‘best’ was now a mediocre ‘reason’, solemn and unexplainable ‘reason’? When I confronted her about it, she reluctantly explained, ‘I can’t imagine that your Parkinson’s disease is for the best.’ I felt a sudden rush. I didn’t know it then, but I had been looking for something to inspire me. Right then and there, I made the decision to give her optimistic ‘best’ back. Somehow, some way, I would make my having Parkinson’s ‘for the best.’ The fog and denial that I had been living in started to lift. I felt a purpose. That’s why I wrote this book. I was a successful student and professional. The same principles and steps I used to develop my life then apply equally to living life to the fullest after a life-changing adversity. Your own medical condition or one of a loved one, personal loss, a change in your job or even relationship situation can suddenly stop you in your tracks and change your life as you had known it to be. It does not have to break you. You can make it ‘for the best’. If you think that being diagnosed with Parkinson’s is the best thing that happened to me. The answer is no. At times, I need to lean on my Bernadette. Reminding myself to “Let go and let God.” I have to force myself to bring my focus back to what is now and follow my “life purpose.” Then I can be the person you see in my inspirational talks. The voice you hear when you read this book. The person you talk to one-on-one and look to for hope. Enthusiastic, passionate and inspirational. It’s through pain and fear that builds a warrior. That’s why you fight. There is not a person throughout history that made a difference who did not have to fight. I see the fear in the eyes of the people in my audiences. They want to fight, but need guidance to find their mission. They find peace in my words of hope. I am determined to make my Parkinson’s ‘for the best’ and I will succeed. Make the decision. DECIDE SUCCESS. I live the title of my book. And, by the way, I ain’t dead yet.” Excerpt from DECIDE Success: You Ain’t Dead Yet by John Baumann (available at JohnBaumann.com and Amazon.com).
I will be presenting over the next few months in the following places in case you are close by and want to hear me speak live and meet with me one-on-one: March 30 in Perak, Malaysia; April 4 in Orlando, Florida; April 12 in Rochester, New York; April 29 in Edison, New Jersey; May 17 in Buffalo, New York; September in Madison, Wisconsin; October 25 in Sioux City, Iowa and South Carolina in November. I am hoping to present in Colorado and Texas as well. I have some open dates if you want me to address your support association, hospital or business organization.
JohnBaumann.com – JohnDecideSuccess@gmail.com – 502-262-3300