Each person experiences the symptoms of Parkinson’s and living with Parkinson’s uniquely and it changes as the disease progresses. So the saying goes “if you see one person with Parkinson’s, you have seen one person with Parkinson’s”. No one can assume they will live the same as others with the disease. However, what does it feel like to live with this neurodegenerative disease? Can it be described? Is it any different on a daily basis then how others feel? We asked six people living with Parkinson’s from different parts of the country, different ages and both genders one question – what is it like to live with Parkinson’s? Their answers are insightful, emotional and honest. We hope you listen to all six. Thank you to my sponsor, Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about Parkinson’s treatment options, please visit DBSandMe.com.
062 What Is It Like Living with Parkinson’s? Six People Respond
Each person experiences the symptoms of Parkinson’s and living with Parkinson’s uniquely and it changes as the disease progresses. So the saying goes “if you see one person with Parkinson’s, you have seen one person with Parkinson’s”. No one can assume they will live the same as others with the disease. However, what does it feel like to live with this neurodegenerative disease? Can it be described? Is it any different on a daily basis then how others feel? We asked six people living with Parkinson’s from different parts of the country, different ages and both genders one question – what is it like to live with Parkinson’s? Their answers are insightful, emotional and honest. We hope you listen to all six. Thank you to my sponsor, Boston Scientific, the maker of Vercise Genus, a Deep Brain Stimulation or DBS system. To learn more about Parkinson’s treatment options, please visit DBSandMe.com.
Totally enjoyed this one. As Sheryl remarked, there appears to be a common theme. A PD diagnosis is life changing but it doesn’t necessarily have to be for the worse. All of these people have found a way to live with the disease and often with enhancements to their lives pre-diagnosis.
I was fortunate to be the subject of the previous episode of this podcast for running a bunch of marathons. I love the message that this group is putting out. My skills at baking cookies and my running exploits notwithstanding, I am happy to know that there is nothing special about me with respect to my approach to PD. Ours is a message of hope and defiance in the face of a nasty neurodegenerative disease that all newly diagnosed people living with PD should hear. Exercise and the support of loved ones will see us through this.
-Joe Drake
I found everyone to be refreshingly honest – especially the last fellow who did not sugar coat anything.
I would have liked to have known the ages of each person interviewed when they were diagnosed, as well as the length of time that they have had Parkinson’s, as well as their age now because I think that those things make a difference in how you approach it and how you feel about it and think about it.
Also, depending on how long you have had it, you go through different stages from non- acceptance to acceptance (to some degree) and from “why me?” to “I am not going to let this thing get me down!” (or as Sheryl says, “I don’t let Parkinson’s shake up my life, don’t let it shake up yours!”)
This was a very complex question Sheryl that I am not sure can be answered in 6 minutes!