Advice from the Parkinson’s Community for Newly Diagnosed Patients

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by Samantha Felder |

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Imagine moving to a brand-new town, thousands of miles away from anyone you know. How would you feel after a few days? Weeks? Months? The feeling of isolation that might gnaw at your heart is similar to what many of us with Parkinson’s disease experience, especially when diagnosed at a young age.

That’s why I turned to several Facebook forums to ask people with Parkinson’s, aka the “experts,” what advice they would give someone newly diagnosed with the disease. Thank you to everyone who shared advice with me. Hopefully the following responses will give others hope for the future.

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Coping with the diagnosis

“Breathe.” – Stuart P.

I know that may sound a bit contrite since it’s so simple, yet in times of stress we often forget to breathe. A Parkinson’s diagnosis can be a reality check. We just need to stop for a minute and breathe.

“Stay positive. Don’t let yourself down by overthinking your diagnosis. And do what you can when you can.” – Emma W.

I definitely learned this lesson the hard way. Earlier this year, my husband and I moved from Wisconsin to Florida. During the packing period, I helped by pointing to what I wanted in each box. I knew that if I did too much, I wouldn’t have been any help the rest of the day.

“Allow yourself to grieve but not wallow. Take it a day at a time and fight.” – Emma W.

As you read more about Parkinson’s, you will find that “fighting” is a common theme. This means truly fighting the disease through medication, exercise, and nutrition.

“Acceptance is the way to go.” – Tom L.

“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.”― Michael J. Fox

“Allow yourself to be angry and upset about the diagnosis but don’t let those feelings prevent you from figuring out how to deal with having Parkinson’s or from living your life.” – Peggy H.

“Just remember – everyone is different in how PD affects them. Jump in with both feet, and challenge yourself with better nutrition, more exercise, best sleep habits, and connecting with others.” – Ann P.

I know it can be tempting to compare symptoms with a friend who has Parkinson’s. But just as no two snowflakes are alike, no two Parkinson’s patients are exactly the same.

Treatment

Note: The following recommendations are not a substitute for medical advice. Consult a medical professional before deciding on a treatment plan.

“Find a good movement disorder specialist that you like. Plan on having a long relationship with them.” – Natalie P.

There is a difference between a general neurologist and a movement disorder specialist. A neurologist may treat hundreds of neurological conditions, while a movement disorder specialist focuses specifically on patients with Parkinson’s or other movement disorders.

“Try not to despair and begin an exercise and nutrition regimen immediately.” – Kelly M.

There is no one solid nutrition program for Parkinson’s patients, but the Brian Grant Foundation suggests following a Mediterranean diet, which focuses on fruits, vegetables, whole grains, nuts, and healthy fats. These foods may help minimize damage to cells.

“Start exercising with intensity every day. Enroll in a Rock Steady Boxing group. They will become your support family.” – Vicki C.

“Exercise is about living, staying mobile, and minimizing discomfort.” – Phyllis A.

Community and relationships

“Reach out and immediately find support of other PD individuals.” – Scott E.

Starting a new relationship can be scary, and reaching out first can be terrifying. But like me, you may find your best friend on this journey.

“I wish I had a mentor immediately following my diagnosis to guide me through the process. Not for medical advice, just for empathy and compassion.” – Ellen B.

“Every day is a struggle but I push on, trying to be as normal as possible.” – Katherine B.

My advice

Having Parkinson’s is not a walk in the park. It takes every ounce of my being to get out of bed some days. My body is often at war with my brain. My brain keeps telling my body to do something, and my body simply refuses and locks up, so I can’t move at all.

It’s important to keep laughing, roll with the punches, and learn to “Embrace the Shake.”

***

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.

Comments

Suzanne Mcghie avatar

Suzanne Mcghie

I must say that just reading the comments above seems to lift my feelings from despsair to well a bt of somebody out there "gets it"

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Lisa Mintz avatar

Lisa Mintz

Thank you for taking time to create this article. I have felt so overwhelmed by my PD diagnosis 4 months ago. Your advice is spot on and everything rings so true for me. If only more PD patients would continue to share their experiences it certainly would help relieve some of the isolation feelings. Thank you again 💓

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