My Experience with Parkinson’s and What I Have Done the last 18 years to Live the Best Life that I CouldMay 8, 2020
Parkinson’s is awful. But you know that already. If you are reading this, you most likely are a Person with Parkinson’s (“PwP”) or a caregiver to one. I remember getting diagnosed. Other than the hand tremor, I did not think that anything was wrong.
I don’t know how I missed it, but I did not notice my lack of facial expression, my eyes not blinking, and my handwriting was illegible. I also did not think anything of the tremor because my shaking hand just had been operated on to repair a broken thumb and I thought that the surgery caused the shaking. Interestingly, my arm did not swing when I walked which I again attributed to having a heavy cast on that hand. I was, finally, diagnosed in March of 2002.
I was just 41 years old. I was admitted into a club called, “Early Onset.” A club that I would not have joined voluntarily. The bad side is, well, you have Parkinson’s. The good side, if there is one, is that I have observed the symptoms progress more slowly than someone diagnosed who is over, let’s say, 50 years old. Not always, but more often than not.
So, my disease was progressing slowly and the medicine was working. I was an Ivy League educated attorney and was able to do my job as effectively as ever. In fact, maybe better. I believe that we learn or take away something valuable from every significant event in our lives. And Parkinson’s definitely is life-changing.
I was able to remain relatively symptom free for the first few years. I did not know it at the time, but Parkinson’s effects not only motor and non-motor skills, but mental abilities. I was being paid for my ability to “see beyond what is apparent” and my judgement both legal and as an executive.
Now that I look back on it, I believe that Parkinson’s (or maybe the medicine I was taking) negatively influenced a few important decisions that I made during those first six years. For example, if I had anything to say to those newly diagnosed, I would say that you may want to delay disclosing your condition to your employer. Talk to an employment attorney as soon as possible and let them help you decide what to tell your employer and when in light of FMLA, ADA, and any other law. Don’t give them any excuse to fire you. Simply put, they don’t want you working for them, if they can find a way to terminate you without reference to PD, they will.
Despite these mistakes, I was able to do what was necessary to oversee a huge project, the sale of the company. I was also able to teach a college night class. When I no longer worked as a full-time attorney, with sufficient rest, I was able to win what was thought to be an unwinnable trial nine years into my PD. Granted it wiped me out for weeks, but I did it and we won. I practiced for two more years when the Parkinson’s finally started to catch up with me. I was able to control my symptoms through sheer willpower, staying positive and focusing on my purpose. In fact, I was able to write a book on success: Decide Success, You Ain’t Dead Yet (I just released a 2020 edition that you can get by writing to me at firstname.lastname@example.org). Not only success with PD, but also success in school and at work.
Once my symptoms started to progress, I decided to turn to exercise and diet. Yes, what you eat matters. Initially, I tried to do it on my own, but was not faring well. Then I met someone who was living the lifestyle that I knew would help me with my PD. The first thing I did was to cut out all soda, junk food and fast food (easier said than done, but it made a huge difference). The second thing I did was to reduce sugar and dairy from my meals. The third thing I did was to become a pescatarian (organic vegetables plus line-caught fish only). My role model did not have to change her diet as she already lived it.
Once I started to eat a healthier diet, we started to work on my exercise routine. Once a month for 30 minutes on the treadmill was not going to cut it if I was going to try and stop or even lessen the symptoms of PD. That was in 2012. Since then, I have done a combination of core training, boxing fitness, hot & warm yoga and bike training (Peloton). What is most important is to find a regime that involves stretching, sweating and hopefully strengthening. I went from 215 to 170 pounds and cut my bad cholesterol in half over the next year. I also married my role model.
This lifestyle change allowed me to have more “on” time and live a high quality of life with Parkinson’s. I should say that this suspension of symptoms does not last forever. On the plus side, I am as fit as I have ever been. On the minus side, I am getting older (59) and 18 years of fighting PD is starting to wear on me. I can only keep up this exercise routine for so long and have needed to adjust my lifestyle. I can tell you this: I try to work out every day and put out my best effort. Sometimes I have to try several times a day and sometimes I get in a great workout the first time.
Traditionally, rest has been a great healer. I do the limited amount of work that I can do first thing in the morning and my work time has been diminishing over time. My work is preparing to do presentations which inspire those with chronic conditions and their care partners to live the best life possible.
Water has also made a difference. Staying hydrated is extremely important. Unfortunately there is a delicate balance. I wake up several times during the night to go to the bathroom. Recently, I have woken up unable to move my arms and legs. It feels like an alien has taken over my body.
If I concentrate, I can inch my limbs to remove my covers. Sometimes, however, I don’t make it on time. Talk about embarrassing. But it is what it is. The best that I can do is to not drink water after a certain time of the day.
I have had an exciting life and made the most out of any situation. I can tell you that PD has been a test. In order to practice what I preach, I “live the best life possible.” I have brought my inspirational presentation to as many locations as possible and enjoyed visiting new (as well as old) places. But there is so much yet to do.
I have also traveled extensively. In living such a life, you need to recognize that you will probably live into your eighties especially if you clean up your lifestyle. I hope that you have the financial resources to sustain yourself. Before you start spending money, you should see a financial advisor. Your earning potential is likely to be impacted by PD. Mine sure was.
Today, I do have to deal with more off periods. That is just life. I can control some things, but not everything. You just do what you can do. That’s the best advice that I can give.
# # #
John M. Baumann BBA, JD, internationally-recognized inspirational speaker and author of Decide Success, was a 41 year old high-powered attorney until something happened to change his life forever. Learn how he changed his focus and priorities after being diagnosed with a chronic illness, Parkinson’s disease in 2002, and in the process, discovered how to live the best life possible and inspire others to join him in doing so whether or not they have a chronic illness.