Newly diagnosed with Parkinson’s disease? You’re not alone
My message to those at the beginning of their journey
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.
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.
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Karen
I totally agree that with the right knowledge and attitude you find yourself coping with this disease positivity is part of the medicine.
Christine Scheer
Hi Karen,
Attitude is everything!
All my best,
Christine
Joanna
This is such an important topic. My husband was diagnosed with early onset more than 10 years ago now. What I wish we’d heard then - this is a fork in the road, not a dead end. We have had some wonderful experiences in the last ten years - travel, family, biking and golf, so much more. There are challenges for sure, but adjusting time frames and learning patience have been two big gifts. Anything is possible - everything is still possible - sometimes it just takes a bit longer. Personally I used to struggle initially with the requirement for an attitude adjustment when things were slightly more complicated. I’d have really appreciated understanding that you can literally get used to anything and even learn to enjoy it.
Christine Scheer
Hi Joanna,
I admire your wonderful attitude!
All my best,
Christine
Mark Shrewsbury
Parkinson’s is a series of work arounds! Perhaps, for example, the tremor in your hand is messing with your playing guitar? So, work around that by learning to pick guitar! Tremor making it a risky proposition to shave? Try an electric shaver! If you can’t do the exercise you always did? Make there’s something new that can!
My point is that there is always hope, there is always another way to do the things you like…just differently! In my case deep brain stimulation (DBS) restored some of my previous capabilities…hooray! Live life as best you can. Exercise, make new friends, get a Motion Disorder Specialist (specialized Neurologist), eat the right foods (Mediterranean diet is good), pray, & have hope! New meds, new alternatives, new options are out there.
Christine Scheer
Hi Mark,
Yes! Hope is so powerful!
All my best,
Christine
Sam Buchanan
I was diagnosed about a year ago at 73 yo. I was an engineer in my former life before retirement so what I wanted was “work around” to help me continue with life similar to 3 years or so before diagnosis. I was/am pretty active such as hunting/fishing. ie what can do to continue as normal as possible. Wear a life jacket constantly in case I feel out of the boat. My traits are so minor that I’m not on meds yet but I do have to do some things differently now.
Christine Scheer
Hi Sam,
It sounds like you are doing a great job adjusting to your diagnosis. You've got this!
All my best,
Christine
Terry L Lopez
Yeah I guess when my neurologist told me I had Parkinson's kind of knew I already had it the symptoms were there like freezing my legs were in so much pain me and my family physician had an idea something was not right so I went and got the test and before we got the test back she wanted me on the medication and I said let's wait and so I started doing some research on everything and I was gung ho that I wasn't going to let it get to me and I'm going to exercise but now I'm lazy and it's been two and a half years I just can't get myself motivated to do anything I guess the more I thought about it especially when I couldn't work anymore I got a little depressed and I don't know I wish they would encourage you a little bit more be a little more understanding maybe I need to get a new neurologist
Christine Scheer
Hi Terry,
You probably know this, but both depression and apathy can be part of Parkinson's. Maybe talk to your neurologist about it? Do you go to any support groups or a Rock Steady Boxing? If you can, search something out, it sounds like you could use some encouragement. There are on-line support groups, and exercise groups as well. Hang in there.
All my best,
Christine
Cecilia McClellan
My husband was diagnosed with PD 4yrs ago. Told you can live with PD however not given any strategies or encouragement on
how to do that.
There needs to be more conversation about what to expect. I understand that there is no definite pattern to PD but information
concerning the disease would be helpful.
Christine Scheer
Hi Cecilia,
Have you checked out the Davis Phinney foundation Every Victory Counts? If you click on the link above in the column, it's a wonderful resource.
All my best,
Christine
SHARON L KRISCHER
Christine,
Thank you for the mention in your column. We are a completely volunteer organization that provides support for people with Parkinson's. Our mentoring program began as a result of lack of resources for the newly diagnosed during the pandemic. The mentoring program is still growing strong after 4 years. We also would like to invite your readers who would like to be mentors to fill out an application to become part of our team
Christine Scheer
Hi Sharon,
My pleasure! You have developed a wonderful program. Thanks for reading!
All my best,
Christine