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When and How to Go Public with a Life-changing Condition (For me, Parkinson’s disease).

August 5, 2018

I was 41 years young when, in 2002, I was diagnosed with Parkinson’s, a progressive, degenerative, neurologic disease for which there is no cure. I had been having symptoms, off and on, for years (slight tremor, expressionless face, monotone & softer voice, fatigue, micro-handwriting, right arm not swinging when I walked), but nothing that any of my friends, doctors I saw for other issues, or even friends who were doctors noticed.

When an internal medicine doctor finally, without explaining why, said that I “might consider” making an appointment to see a neurologist, I received my diagnosis (I did ask for confirmation, but declined, for now, when I was told that it would entail an autopsy).

I was in shock and don’t, to this day, remember driving back to work. I was the top lawyer at a publicly-traded corporation. What should I say to my supervisor? What should I say to my co-workers? I have always been an open book. I did not consider whether and what advice I needed. I did not consider getting advice from an employment attorney, a financial advisor, a disability attorney or, the most important person, my care partner.

Going public is one of the most difficult decisions I had to make. Am I hiding something material to my ability to do my job by not disclosing the condition to my employer? Is there some good that I can do for people who have a chronic condition if I go public? How will this affect the way people interact with me? What role does my care partner play in making this decision? All of these questions and considerations about “going public” will be addressed.

https://www.linkedin.com/feed/update/urn:li:activity:6430401455789793280/ for my latest thoughts.

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