Tips for dealing with a Parkinson’s diagnosis

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Author: Parkinson's Life editorsPublished: 31 January 2019

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We asked Parkinson’s campaigners from across the globe to share their best tips for dealing with a diagnosis


When we reached out to Parkinson’s bloggers and campaigners around the world for their advice on dealing with a Parkinson’s diagnosis, they were only too happy to share their insights. From telling friends and family to adjusting the way you live, here are their top tips on dealing with this life-changing news.

What advice would you give to someone who has been recently diagnosed with Parkinson’s?

Debbie Shapiro, founder of Tikvah for Parkinson, Israel: “Whether it be Parkinson’s, or something else, I would tell that person to take their diagnosis as a wake-up call to make some lifestyle changes. Exercise, social interaction, healthy diet; they are important for everyone, but for a person with Parkinson’s, they are game changers.”

Anders M. Leines, video journalist, Norway: “You will never be the person you were before, but that is not necessarily a bad thing. Everyone’s Parkinson’s is different, so find out what works for you.”

Mariëtte Robijn, blogger, the Netherlands: “Statistics help. Statistics such as: the chance of you getting each and every Parkinson’s symptom is zero.”

Kibra Kebede, founder of Parkinson Patients Support Organisation, Ethiopia: “Remain active and plan how to live for the future.”

Gary Boyle, blogger, Ireland: “Give yourself time, lots and lots of time. And don’t be surprised if you find yourself tearful at times.”

Debbie Shapiro, founder of Tikvah for Parkinson, Israel

Debbie Shapiro, founder of Tikvah for Parkinson, Israel.

Do you think it is best to share your Parkinson’s diagnosis with others?

Debbie: “Every person is different, but at the very least, find one person to confide in. You need all the support you can get.”

Kibra: “Parkinson’s is important to share, especially in a traditional society like Ethiopia – you need to tell the community about the condition.”

Gary: “For young onset people it is really tough, and many young onset people spend many years ‘in isolation’ as they struggle to come to terms with their new life.  For that reason, I think it would be more beneficial to tell family and friends sooner rather than later.”

 

How did you tell your place of work about your diagnosis?

Mariëtte: “I run my own business. I did try to hide it, but it’s not in my character to hide things. If it were, I suppose, I wouldn’t be an international blogger.”

Anders: “The workplace is important, and I know that our options differ enormously between countries and employers. I presented a doctor’s note to my employer and the message was that ‘Anders needs to be working but stress should be avoided’. Use your national Parkinson’s organisation to find out what your rights are.”

Gary: “It was the most stressful period I have experienced in my life, ever. Thankfully, I was accepted onto my company’s income protection plan.”

Kibra Kebede, founder of Parkinson Patients Support Organisation, Ethiopia.

Kibra Kebede, founder of Parkinson Patients Support Organisation, Ethiopia.

Is there anything you know now that you wish you had known when you were diagnosed?

Mariëtte: “I wish I’d know that in six years’ time I’d still be working, writing and socialising.”

Gary: “I spent too long in denial of my condition and situation and I really should have looked for help much earlier. I feel now that I should have steadily increased my activities from as early as possible after diagnosis – something I am absolutely championing now!”

 

Were there any lifestyle changes you made that had a positive impact on you?

Debbie: “I basically changed my entire life! I used to be a couch potato. Today, although I am far from being an athlete, I exercise regularly, and am very, very active in the Parkinson’s community.”

Kibra: “I established an organisation that supports Parkinson’s patients and raises awareness. It keeps me busy and active.”

 

What’s the biggest impact that Parkinson’s has had on your life, and how do you deal with it?

Debbie: “The sidewalks in my neighbourhood are very crowded. People bump into you, kids on bikes suddenly race straight toward you. At times, it can be very frightening. When that happens, I remind myself that I am a normal, intelligent person, facing an unusual challenge, and that it’s okay to feel overwhelmed.”

Gary: “Quite simply, every aspect of my life has been impacted by shaking palsy. If the situation allows I try and do some exercises or go for a walk, but this is not always possible.”

Gary Boyle (left), blogger, Ireland.

Gary Boyle (left), blogger, Ireland.

How do you make sure you are getting the most out of your doctor and other medical professionals?

Debbie: “Come prepared to appointments. Write down your questions and ask them in order of priority.”

Kibra: “We only have two medicines for Parkinson’s in Ethiopia so our doctors don’t have too many options. They try their best to help us.”

Anders: “Make sure you learn about the condition and the different therapies available.”

 

Do you have any other tips that you would like to share?

Anders: “Find a local Parkinson’s group or start one. There is so much comfort in having a support group.”

Debbie: “Don’t forget to have fun! I am a big believer in fun. Laughter is the best medicine!”

Gary: “Try and find out if there is a group you can join in your area and join up! And if nothing else, you can learn a new skill – I’m no longer a ‘two left feet’ Irish dancer!”

For more information on Parkinson’s diagnosis please visit the EPDA website.


Read more:

From diagnosis to clinical trial: my worldwide Parkinson’s journey

I hope my Parkinson’s play changes the way doctors deal with diagnosis

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