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Parkinson’s: The “NO ONE KNOWS” Disease

January 14, 2018

Now, you may ask, “Why do you call it the ‘no one knows’ disease?” Because it is what you hear as the answer to virtual every question asked by not only patients and family caregivers, but healthcare professionals.  Here is a sample of basic questions.

Are you sure that it is PD? No one knows. There is no definitive blood test, x-ray, MRI, scan or office examination. The only way is to slice up the brain as part of an autopsy (not an acceptable option for me yet).

How does someone get PD? No one knows. Maybe you have a gene that is activated by exposure to something in the environment. Maybe metals in the air at work. Maybe pesticides/herbicides. No one knows.

Why is one of the manifestations of PD to have tremors? No one knows. Everyone experiences PD differently. Some have tremors, expressionless face, failure to blink, an arm that does not swing when you walk, a soft voice, balance issues, freezing of legs and hands, cramps (dystonia), loss of smell, etc. No one knows.

I am less than 50 years old, will the manifestations (sometimes called “symptoms”) of PD, progress more slowly because I am young? No one knows. Everyone experiences PD differently. It may progress slowly. It may progress quickly. What someone with PD needs to know is that everyone can influence their experience with PD.

I am over 50 years old, will the manifestations progress more quickly as I get older? No one knows. Everyone experiences PD differently.

Will exercise slow the progression of PD? No one knows. Some clinical trials have looked into exercise and PD. I can tell you from my personal experience that “strenuous exercise” every day seems to slow, if not stop, if not reverse, the progression of my disease. Sweat. Stretch. Strengthen. It seems to work best if it is done every day. When I skip a day, I simply do not obtain the perceived benefits.

Does a positive attitude make a difference? No one knows. I can tell you that it makes sense. Staying positive seems to reduce stress (a big issue with PD). Do you know what the “placebo effect” is? During clinical trials, there needs to be a number of attends who do not receive the medication, but receive a placebo (inert or sugar pill), because everyone in the trial will have some positive reaction for a short period of time because everyone thinks that they took the medication. The power of the mind. Positive thinking.

Does nutrition make a difference? No one knows. Again, it makes sense. Why would eating a healthier diet not have the same positive effect on someone with PD that it has on the general population, with or without, PD? It wouldn’t. In fact, if you are going to strenuously exercise, you are going to need the right fuel in your body to be able to get through your workout.

Does “staying engaged” make a difference? Don’t know. I feel like it does. Studies have shown that people who stay engaged in retirement live 7 years longer than people who don’t. I joined the faculty at a university, wrote a book, became a professional speaker, became the Board Chair of Make-a-Wish Kentucky, and practiced law on a limited basis. Staying engaged is so much more than staying busy. It is doing a self-assessment of your current abilities, skills, talents and strengths, then finding activities that match up which bring you joy.

Does doing what you need to do to fulfill your purpose make a difference? YES!!! Uncover your purpose. Do some serious soul searching. Many people ask the question at their deathbed, “Did I make a difference?” This is your chance to be sure and make a difference. Maybe your last chance to make a difference. I consider writing my book, Decide Success (you ain’t dead yet), teaching and, volunteering fulfilling my purpose. The greatest way that I make a difference is when I inspire others with my words. Whether people in my audience have PD or have had their lives affected by PD or any other chronic illness, my story has inspired hundreds, if not thousands, to set and navigate their course, in a sea of unknowns and “No one knows.”

Testimonials

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