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Inspired by Parkinson’s: How to have an amazing life

September 2, 2014

Inspired by Parkinson’s

How to Have an Amazing Life in the Face of Life-Changing Events

I am a Parkinson’s patient. Strike that. I’m told that the politically correct label is a “Person with Parkinson’s.” I have never been interested in what others say is politically correct.

That is not me. I mean, I do have the disease, but, what I like to say is, “I have Parkinson’s disease; it does NOT have me.”

These are not just words: it is my life’s mission. I will continue to do ALL the things I have always done as well as I can for as long as I can and, along the way, help (mentor) as many people as possible. This applies to any life-changing events that we may experience during our lives.

Some set as a goal “Living Well with Parkinson’s.” I say, “Don’t settle for just living well. Instead, choose to ‘Live an Amazing Life’ with Parkinson’s or any other life-changing condition.”

How is that possible?

It means doing whatever it takes to slow, delay, stem, even BEAT this, or any other, disease or condition, including:

(1) learning as much as you can about the condition or life-changing event (including the non-motor emotional effects);

(2) only putting healthy things into your body;

(3) exercising every day beyond your comfort zone;

(4) having a positive attitude; and

(5) remaining “engaged.”

These things are not easy. In fact, they are very hard, but you HAVE to do it. You have no choice. This is your new JOB.

This life is not a dress rehearsal. It is the live production. Each of us has the power and strength within us if we dig deep enough. Dig deep. This is what I talk about in my inspirational and motivational presentations around the world (www.JohnBaumann.com[1]).

What is the initial daily action?

You need to go no further than the title of my book: Decide Success – You Ain’t Dead Yet[2]. Make the decision. Pick a day that you are going to start. It can be tomorrow, next week, your birthday, whenever. Just set it in concrete, no backtracking.

Before that day comes, you must research.

First, set aside at least one hour a day to research what people, including (but not exclusively) health care professionals, are saying helps minimize, or even eliminate, the symptoms[3]. You must form a team of advisors with a wide range of expertise, some of which may not initially occur to you: a movement disorder specialist, a financial advisor[4], an employment attorney[5], a benefits and Medicare attorney (sometimes called an eldercare law attorney), a person from a Parkinson’s Association to guide you through the many resources available to you[6], a fitness expert, a nutritionist, a massage therapist and a counseling therapist.

Second, schedule out what you will be eating and when each day for the week. I have never liked breakfast so I researched and decided upon what I consider to be the best nutritious meal replacement shake for my morning meal[7].

I then eat several small meals throughout the day of raw (sometimes steamed) vegetables (love farmer’s markets), organically-grow fruit, non-animal protein, and gluten-free carbohydrates.

My thinking, which is based upon absolutely no medical research whatsoever (that I know of), is that my body (immune system) is fighting Parkinson’s 24/7/365 and any other stress on the system cannot be tolerated.

I have watched documentaries (i.e. Food Matters[8]) that have convinced me that breaking down any meat (especially animal meat that may have had foreign chemicals introduced into it, before or after slaughter) or processed food stresses the digestive system and is just not good for me.

I drink water constantly, never soda, diet or otherwise. Although we can’t avoid sugar entirely (it is hidden in most of what we are offered at the supermarkets), it has been called addictive and even toxic[9]. Reading food labels for sugar[10] content is at least one thing you can do. A good rule-of-thumb is, if you can’t pronounce an ingredient, you may not want to put it in your body. I started eating this way and I just felt better.

Third, exercise time slots need to be the first thing you schedule out in planning your week.

I have always considered myself an athlete. Now I am an athlete WJSHTHPD[11]. For exercise[12], I started out three years ago, (almost ten years into my Parkinson’s) at 50 years old, walking on a treadmill and have now progressed to either 60 minutes of Orange Theory Fitness (“OTC”), 90 minutes of Bikram hot yoga[13], or both almost every day. For days that I stay home, I use exercise videos from BeachBody[14]. I just feel better after exercising.

As part of my physical health, once a week, I have a deep tissue and muscle massage called, Rolfing. It is painful (very) while it is being performed, but like most things that are good for you, make you feel much better after it is over.

Fourth, I only spend time with positive people, read inspirational information and watch uplifting programs. In fact, I went so far as to contribute a chapter to the book entitled, “Courageous Stories of Inspiration[15]” and the opening chapter, “Out with the Bad and In with the Good,” to the downloadable book “The Art of Living Well[16].” Interestingly, OTC and Hot Yoga have the most positive people that you can find.

I have focused upon the “silver lining” and not the dark cloud that is Parkinson’s. I have worked through the emotional rollercoaster of denial, disbelief, shock, embarrassment, anger, sadness, disappointment and depression. I have not just accepted Parkinson’s in my life, but have actually embraced it.

This no longer just means the change in motor function (which can be quite painful and mood altering) and the introduction of many medications into my system, that have many side effects[17], but also must include the psychological and these emotional effects of any life-changing event including Parkinson’s.

For me, this “embracing” includes the extremely difficult realization, after all the work and sacrifice of getting admitted to, attending, and graduating from an Ivy League law school and loving every day the practice of law, that, at 48 years old, I had to give up my law practice and do something else for a living[18].

Further, I was no longer Executive Officer and the General Counsel of a formerly listed steel company, but that pitiful guy that used to have it all until he contracted Parkinson’s disease in the prime of his career.

For many, we identify with what we do for a living and it can be devastating to have that part of our identity ripped away from us through no fault of our own. In fact, what is one of the first things that we say to people we are introduced to: I am a [insert profession here].

I know, from my own personal experience, that staying positive can be particularly difficult while under financial pressure. Most of us live at, or close to, paycheck to paycheck. I was no exception. The more we make, the more our monthly payments increase, from house mortgage to car payments to property taxes to school tuition for your children and on and on. It’s tough to cut these monthly payments out, or at least down, in a short period of time. It affects the entire family.

Often, we wait too long (remember disbelief, denial and embarrassment). But, I have come to realize that a simplified life can actually lead to a happier life. I found a documentary simply entitled, “Happy” that helped me understand this concept and stay positive through the transition.

I could actually take the position (I was an attorney after all) that the benefits of my having Parkinson’s right now actually outweigh the negatives (no, I’m not kidding). That is a bold statement.

Let me back it up. I am more physically fit than I have ever been in my life. I have lost those 40 pounds that I knew that I needed to lose, but never even tried. My bad cholesterol level is down from 180 (very high) to 105 (normal). The unbelievably part is that I have had this degenerative, progressive, irreversible, neurological, incurable disease for almost 13 years and you would not know it by looking at me (at least most of the time).

Finally, stay “engaged.” I am a professional speaker, author, and teacher,[19] now instead of an attorney[20]. I get to influence young minds by speaking on success at schools and other organizations[21]. I get to travel the world teaching my twelve Decide Success principles and inspiring people who have had an adverse or tragic life-changing events, including (but not exclusively) being diagnosed with Parkinson’s or had a loved one diagnosed with Parkinson’s[22]. I have the time to write.

As my daily action items, I create healthy meals, workout, expose myself to positive influences and stay engaged. I got to write my book and contribute my thoughts to numerous other media outlets[23]. I have been interviewed on television[24], radio[25] and had articles written about my wife, who is my primary caregiver, and I[26].

My time is spent helping nonprofit causes like Make-A-Wish Foundation and various Parkinson’s associations. In fact, although I am new to Arizona, I have been asked to Chair the Parkinson’s Moving Day Phoenix event scheduled for November 15, 2014[27].

 

The world’s response to the “Ice Bucket Challenge” confirms my deeply held belief that people simply care about each other. To endure iced water poured over your head and to send donations in the magnitude of what has been received is truly heartwarming.

 

Although we don’t have any clever “Challenge,” we do have a great cause that needs funds to be raised if we are going to help people live an amazing life with Parkinson’s.

I am a different person than I was pre-Parkinson’s. Some have said, “A kinder, gentler John Baumann[28].” One set of “blinders” has been removed. I see things that I have never noticed before concerning what really matters in life. I am not as interested in material things. I have a whole new set of “real” friends in the Parkinson’s, yoga and fitness community that I have “bonded” with due to our common issues and passions. I feel like I am making a “difference.” My life has purpose and I am focused upon leaving a legacy.

 

Finally, and most importantly, during my journey with Parkinson’s, I met and married my love, my chef, my workout partner, my friend, my sidekick, my wife, my Bernadette. I truly am living an Amazing Life with Parkinson’s. So can you.

 

JohnBaumann.com

JohnDecideSuccess@gmail.com

502.262.3300

 

[1] I had done over 60 presentations for associations, organizations, healthcare and other companies across the United States and the world (including Malaysia, Canada, the Virgin Island and Puerto Rico) and am currently scheduling my speaking and workshop calendar for 2015. Contact me at JohnDecideSuccess@gmail.com for more information.

[2] For an autographed copy, visit http://theinspiringesquire.com/buy-now/ or visit http://www.amazon.com/John-M.-Baumann-JD/e/B005MXW7H4/ref=dp_byline_cont_pop_book_1 for the audio version.

[3] For example, this included, for me, recently finding out about doctor-prescribed self injection medicine to jump-start me when I experience unexpected “off” periods.

[4] Especially if you are not financially ready to stop working.

[5] If you are still employed, you will need advice on how and when to inform your employer to take make full use of the Americans with Disabilities Act.

[6] Resources can include support groups (insist on ones that are positive and not just complaint sessions), voice therapy, etc.

[7] For more information, contact my wife Bernadette at bbaumann615@gmail.com

[8] Sample documentaries include Food Matters, Forks Over Knives, Vegucated, Fed Up, Hungry For Change, Fed Up and Food, Inc.

[9]   See footnote with documentaries above.

[10] Sugar has many names like high fructose corn syrup, dextrose, glucose, sucrose, etc. As the documentaries show artificial sweeteners are likely even worse for your health.

[11] Who Just So Happens To Have Parkinson’s Disease

[12] As you will see, our exercise or workout is more like training for a sport or even Olympic event, but our event is called remaining healthy.

[13]   When we are traveling to inspirational or success speaking engagements, we book our hotel as close as possible to a local Bikram Hot Yoga studio.

[14] For more information, contact my wife at bbaumann615@gmail.com

[15] For an autographed copy, visit http://theinspiringesquire.com/buy-now/

[16] For a free copy, contact me at JohnDecideSuccess@gmail.com

[17]   These include experiencing vivid dreams that I often act out to the peril of my bed partner.

[18] There are serious financial ramifications of having to prematurely discontinue one’s career that must be recognized. Further, the loss of status can be devastating. For me, I had to give up an executive officer position including all the associated perks (Kentucky Derby, PGA tournaments, NFL game suites, dinners at 5 star restaurants, private planes, etc.). Now, I pick and choose more carefully what I do for entertainment.

[19] Faculty of the University of Louisville, College of Business since 2006

[20] Although I do continue to often consult on legal issues related to the American with Disabilities Act (the ADA).

[21] Including conducting workshops at several companies.

[22] See a sample 40 minute presentation at http://theinspiringesquire.com/

[23] Visit http://theinspiringesquire.com/category/media/

[24] http://www.wave3.com/story/26286361/louisvillian-encourages-others-to-live-life-despite-parkinsons

[25] http://www.ahandbookforlife.com/chat-archive

[26] Most recently Louisville Magazine, Health Edition, March 2014. For actual copies of these articles, contact me at JohnDecideSuccess@gmail.com

[27] To create your own or join Team Baumann, visit: http://www3.parkinson.org/goto/TeamBaumann

[28] No small accomplishment for someone who grew up near New York City and worked as an attorney for 23 years. Some of you may not relate to this, but those who do will appreciate it.

Testimonials

“After two years of not being able to hear speakers in person , I was thrilled to have John Bauman as a speaker at our “ Living Well With Parkinson’s’ Gala!. Not only was John engaging and inspiring to get to know off stage , on stage he truly drove home the theme of empowerment to our audience and left our growing community of attendees with several “ aha “ moments and desire to hear more. He spoke from personal experience as a Parkinson’s patient ,inspiring the audiences motivation to truly wish to make a difference and uniting us all in our humanity. Attendees after listening to John , felt inspired to make a difference in the world and do their part to create change for those living with Parkinson’s. My only regret was not being able to spend more time with John and I look forward to having him speak again to our audience.”

Naomi Wong WPP Program Manager

John’s message of hope, inspiration and laughter was ideal for anyone living with PD. He was extremely flexible and a delight to work with.

Leisha Phipps, MSW Program Director - Dallas Area Parkinson Society

We all felt inspired and enjoyed listening to your presentation. Even though we are not living with Parkinson’s, we felt boost of motivation to continue helping those who are living with this disease. I am motivated to make more personal phone calls to people living with PD and asking how they are doing. Sometimes that “extra” bit of kindness truly makes a difference to someone. I am also motivated to research program ideas and partner with other organizations that may have similar values.

I learned that life is unexpected and that you cannot control it. What matters is your attitude!

-Great way to end the day, brave man, thank you very much!

-Good, excellent, great, outstanding speaker, very moving!

-Inspirational who just “gets it”

-Positive thinker and very funny!

-Honest speaker but also humorous!

Parkinson’s Society of Southwest Ontario, Canada, Symposium Keynote Presentation

“whatever hand life deals you, whatever life changing adversity you have to endure, you still have some control over it.” “You don’t have to just to live well,” he advises,” but live an Amazing Life.” The formula he proposes: Faith in yourself, discipline, determination, desire, intensity, and inner strength.

MARY SPREMULLI VOICE AEROBICS

Yes, you touched every person at our conference, who will in turn change and impact so many others. The feedback from our participants was overwhelmingly positive. You are the only speaker to ever receive a standing ovation. Thank you for taking time to share, motivate and inspire. We are blessed to know you.

DIRECTOR OF MARKETING REHABILITATION HOSPITAL

I will be honest. During the first 10 minutes of your presentation, I started reading work related material on my laptop. For surely, I had watched your You-Tube and seen your videos and knew what to expect. Surely, as a therapist I had studied this disease, the pathological components, the psychological components, the treatment alternatives……..Surely, I understand it.

Not so much. You caught my attention and I was enthralled. You were able to couple the impairments you experience with the emotions felt. You walked us through your life with the disease through “your eyes”. A perspective that a therapist/nurse rarely has the chance to hear. We get so busy telling patients how to deal with x, y and z, but our eyes are blurred by the science of it all most of the time.

You did it through truth, Through your humor, humility and determination to tell your story. One that most deservedly needs to be shared.

I will advocate to have you share your story. I appreciate your determination, diligence and dedication.

CHIEF EXECUTIVE OFFICER REHABILITATION HOSPITAL