5 Lessons I’ve Learned on My Parkinson’s Journey

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by Lori DePorter |

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If you’re a Parkinson’s veteran, what would you tell a rookie? If you’re a rookie, what Parkinson’s lessons would you like to learn?

I was diagnosed in late 2014 with young-onset Parkinson’s disease at the age of 45. At 53, I feel like both a rookie and a veteran. I’m still learning, but I’ve also gained some wisdom during my time on this journey.

Following are the top five Parkinson’s lessons I’ve learned about living with the disease.

1. Life is different, but still good.

Life with Parkinson’s is different. You will be different. It takes time to adjust and adapt, so be patient with yourself. You will reach a point where life doesn’t seem so overwhelming. There will be both good days and bad days along the journey. Learn to embrace the good days and let go of the bad ones.

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2. People care.

People care about you. Sometimes they just don’t know what to say, so they say nothing at all. You can eliminate the elephant in the room by being open and honest. It’s OK not to be OK, and to ask for help. Giving others a chance to help you actually helps them, too.

3. Let go of the guilt.

Although Parkinson’s may lead to feelings of guilt for “burdening” your loved ones, it’s important to try to let go of these feelings. You are still you, and that’s how others see you — especially children and grandchildren. To them, you will always be Mom, Dad, Grandma, Grandpa, and so on. Parkinson’s wasn’t your fault, and it doesn’t have to define you.

4. Find a movement disorder specialist and an exercise group.

A movement disorder specialist has a greater understanding of Parkinson’s than most doctors. Find one you feel comfortable with, because they will be a part of your life for a long time. I also recommend finding a Parkinson’s exercise group if one is available in your area. It also functions as a support group, and everyone is typically trying to maintain a healthy lifestyle. But if you can’t find one, exercise anyway! It’s important for us to keep moving.

5. Educate yourself, and maintain a positive attitude.

Use reputable resources and try to avoid going down internet rabbit holes. Your mental state and attitude can make a difference in how you manage the disease. Believe in yourself and the tools you use to fight it. Actor Michael J. Fox has shared many helpful reminders about living with Parkinson’s. Two of my favorite quotes of his are:

  • “Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.”
  • “Family is not an important thing. It’s everything.”

These are just a few Parkinson’s lessons I’ve learned over the past several years. Many others in our community have also shared valuable insights. We didn’t choose to have Parkinson’s, but we can choose how we react to it.

A final thought from this almost-veteran: Choose to be happy, put on loud music, and dance like no one’s watching.

Whether you’re a seasoned Parkinson’s warrior or a newly diagnosed one, please visit the Parkinson’s News Today Forums to share your insight and to ask questions.

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.


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