By Mary Beth Bialick
It is not easy to hear that you or your loved one has a diagnosis of Parkinson's Disease. Most of us have certainly heard about PD or even had a family member or friend or acquaintance who maybe had Parkinson's, but what first-hand knowledge or familiarity does just hearing that a diagnosis has been made really provide us? Parkinson's is a relatively common disorder with approximately one million cases in the US today. But, through my association with Parkinson Support & Wellness, I have come to understand that if you know one person with PD, you know one person with PD. It can often take many, many physician visits to finally get the diagnosis of PD. It is frustrating to be at a loss as to what and why certain symptoms are present and what they mean to you. Navigating the medical system while searching for answers and interventions can be a challenging and uncertain journey causing many emotional hurdles. Recognizing that you are not alone as a PD person or partner can be lifesaving on the emotional roller coaster.
One way to address the journey and perhaps help in coping is to learn how others have dealt with PD. The number of “famous” individuals who share their own PD experience can be informative, uplifting and affirming to folks starting their PD journey. Many of you have seen Brain & Life magazine, which is often available for free in your neurologists waiting area. (I am thinking pre-pandemic days...perhaps not any longer.) We can often find a sense of community when we read about others PD experiences. To name a few, just think of Michael J Fox & Muhammad Ali who have given so much to broadening awareness and research for PD. Alan Alda, Neil Diamond, Kirk Gibson, Brian Grant, Ian Holm, Jesse Jackson, Leonard Maltin, Linda Ronstead, Ozzy Osbourne, Janet Reno, Pope John Paul II, George H.W. Bush are among the many other “famous” people with PD. What strikes me is that there is someone from almost every interest area— politics, theatre, sports, music, religion— with Parkinson’s who has shared their PD story.
Learning about others with PD, certainly doesn't take away from our own experience, but it can be a relief to see how many others have faced this PD journey. It lessens the burden of explaining PD when it is a shared part of our culture to know about others with PD. Brain & Life is an excellent resource, but in all honesty People Magazine along with other mass publications often have articles relating to public persons’ medical journeys. Our life and sharing of specifics is a private experience but having PD in the public has helped to lessen the unknown and to make conversations about PD easier.
You can also read more stories of People with Parkinson Disease in our monthly blog series, My Parkinson Story.