My 30 Year Anniversary of a Parkinson’s Diagnosis–with Gratitude

Thirty-years/3 Decades/A score and a decade/10,950 days/262,800 hours/15,768,000 minutes

February 23, 2021 marked the 30^th anniversary of my official diagnosis for having Young Onset Parkinson’s disease (YOPD). My first symptoms started around the age of 17 but my actual diagnosis would not come to light for 6 more years and around 9 doctors (some were neurologists) later. I want to celebrate that I am still here, especially after the challenges of the COVID-19 pandemic and all the changes that came with it.

Last year was a year full of obstacles with the worst pandemic of my lifetime, the loss of many of my friends, and the passing of my sweet Chocolate Lab of almost 12 years, Lily. I am grateful to be mobile, healthy, and content. This thirty plus year journey has been enlightening, strenuous, and an adventure filled with constant learning.

My Hope

It has always been my hope to inform, educate, inspire, and to share insights as well as the tips and tricks that have helped me over time. When I was diagnosed in 1991, trying to get access to quality information on Parkinson’s disease was difficult and locating information about young-onset was even more exasperating.  

This website, KarlRobb.com/ASoftVoice.com, was developed in 2008 and created with the help of my wife, Angela, out of our drive to provide a useful, positive, informative repository that would give our readers an option of empowerment and choice. I created the resource that I wish that I had available to me in 1991.

Here are Just Six Lessons That 30+ Years with Parkinson’s Disease has Taught Me:

1. Your mood and attitude dictate your daily health results. From morning to night, you have a choice how you treat yourself and those people in your inner circle. Your attitude and what you choose to do with it, sets the tone for your day.
2. Build a strong relationship with your care team and stay on top of your body, your mood, and your cognition. From your general practitioner, dermatologist, dentist, eye doctor, cardiologist neurologist, physical therapist, occupational therapist, massage therapist, speech therapist, and care partner, there is a great deal of coordinating and communication to oversee, manage, and to maintain for your overall wellness.
3. Taking care of your Parkinson’s disease is a daily practice. Dedication, focus, and commitment to your health and wellness means working to find what might assist or improve your physical, mental, and spiritual condition.
4. Like any practice or exercise routine, continual maintenance produces benefits. Pace yourself but continue to challenge yourself, safely.
5. Communication and socialization are vital for your mental and spiritual health. Staying socially active is difficult during this pandemic but, be creative and either arrange on-line get togethers or masked socially distant meetings with small groups of friends in a local park.
6. To really manage your Parkinson’s disease well, means uncovering your unique toolbox of care tools–what you do for yourself, between doctor visits. Parkinson’s disease is a full-time job. Dedicating more time for your well-being is a priority that is not selfish, it is an imperative that your focus be on all parts of your life.  

I whole-heartedly believe that battles and wars are violent with negative connotations. I avoid fighting, battling, attacking, killing, or knocking out this illness, but choose to see it more as working around it. Much like a detour, I take a new tact and a new path, flexibly maneuvering through alternative routes.