Newly diagnosed with Parkinson’s disease? You’re not alone

25 January 2025

banner image for the column "Living My Best Life" by Christine Scheer

Do you remember those early days when you were newly diagnosed with Parkinson’s disease? Can you think of anything someone could’ve said to make you feel better? What do you wish they would’ve told you?

I was asked this question a couple weeks ago by someone who had recently been diagnosed, and it gave me pause.

So I asked a few other people with Parkinson’s disease what they wished they’d been told when they were diagnosed. Unsurprisingly, there was a lot of anger about how a doctor had told them they had an incurable disease and then basically left them to figure things out on their own. Many of the people I talked to had been prescribed a medication, but they had no idea what the potential side effects were or even why they were taking it.

That was my experience as well, so I understand the anger and frustration. But that’s not how I felt right away. All I felt at the time of diagnosis was sadness.

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Personally, I needed to know that I wasn’t alone in this. My husband, John, once said to me (while I was crying my eyes out, feeling sorry for myself), “Christine, when you got Parkinson’s, I got Parkinson’s, too.” His words made me feel deeply understood. Whenever I’m feeling down, I think about that moment and it gives me strength.

One person told me, “You know that book ‘What to Expect When You’re Expecting’? I think it would be helpful if there was a brochure on ‘What to Expect with Parkinson’s,’ just so you know you’re not going bonkers with all these varied symptoms.” I love this idea and think doctors need more resources they can hand to their patients.

Another person said that she joined a support group for newly diagnosed patients, but it was a big downer. What she needed was positivity and ideas about how to help herself, not a lot of moaning and groaning. I had a similar experience when I went to my first support group meeting.

The person who asked me the question in the first place told me that for her, the diagnosis made her feel that her life was over. She needed reassurance that Parkinson’s wasn’t the end — that there were things she could do for her health and that she didn’t have to accept things the way they were.

What we all need to remember is that a diagnosis is not the end. It’s the beginning of a journey, and there is hope for the future.

So, for all the people out there who are newly diagnosed with Parkinson’s disease: We see you, and you are not alone. You can do this. You’ll surprise yourself with how strong you are. Ask questions until you’ve got all the answers. Yes, you’ll have to figure some stuff out on your own, but remember, you are part of a strong, supportive community. We’ve got you! There’s an army of us out here, ready to support and encourage you.

The following resources may also be helpful:

  • The Davis Phinney Foundation for Parkinson’s offers the “Every Victory Counts” manual, which is a fantastic resource and free to download.
  • Parkinson Canada offers a national Peer-to-Peer Support Program that matches trained volunteer mentors with those who are newly diagnosed or caring for someone with Parkinson’s disease.
  • The Twitchy Woman blog offers a peer support program for women newly diagnosed with Parkinson’s. Mentors can help guide you in integrating the disease into your life plan.
  • Another website is the American Parkinson Disease Association, which has lots of good information for the newly diagnosed.

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.

The post Newly diagnosed with Parkinson’s disease? You’re not alone appeared first on Parkinson's News Today.

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