How the Parkinson’s community came together for World Parkinson’s Day

More than a million people in the UK are affected by Parkinson’s. Living with it, or knowing someone who is. But for a condition that impacts so many lives, the public doesn’t always know a lot about it.

Mel, one of the leaders of the Team Parkinson’s movement, describes how she felt when she was diagnosed with Parkinson’s: “It’s not difficult to remember, my shock and bewilderment. Leaving the consultant’s office and googling the condition and being confused.”

When the public doesn’t understand Parkinson’s, it makes life harder for people with the condition. It can mean being mistaken for being drunk or having to fight for fair benefits. In the words of David, another movement leader: “I want to be accepted and not avoided.”

That’s why, for World Parkinson’s Day this year, the movement decided to build understanding of Parkinson’s by sharing the incredible variety of stories of people affected around the UK. Led by the Parkinson’s community, our campaign challenged the public to get to know Parkinson’s with the message: “If you know 66 people, chances are you know someone who knows Parkinson’s.” As Barrie, another movement leader, says: “It's a chance to remind the world we are here and that we contribute and we matter!”

Each story shared is unique and powerful in its own way. We’ve selected a few to highlight the variety of people affected by Parkinson’s.

 

Jo, aged 52

Parkinson’s has been tough to live with, but it has also brought unexpected joy

I was diagnosed with Parkinson’s aged 47 and my initial feelings included shock, fear, despair and shame. 

I felt isolated. Even now, nearly 5 years later, I can’t name any high-profile women in the UK who are living with the condition. Why are we all so keen to hide this unwanted diagnosis away?

Parkinson’s has been tough to live with (for me) but it has also brought unexpected joy. Life is what we make of it and even in Parkinson’s we get to choose our attitude. I’ve had more authentic connections with others since my diagnosis and really live my life meaningfully.

Exercise, particularly yoga, has helped me deal with my symptoms. Counselling, on top of medication, helps to deal with the moving target of the condition. By sharing my story, I’ve met some amazing people and now feel proud rather than ashamed to share my journey.

 

Paul, aged 67

Laughter is therapeutic

One morning recently, I spent over ten minutes struggling to get my jumper on. Finally, I managed it just as my wife came into the room.

“Not that jumper,” she said.

Parkinson’s is funny. I know this because I tell jokes about it and people laugh… especially people with Parkinson’s.

Laughter is therapeutic. I know this because I’d forgotten to take my pills before I went on stage recently. Then I heard the laughter and it was like Sinemet coursing through me.

A woman came up to me before another show. She was pushing a gentleman in a wheelchair who had Parkinson’s. “Best of luck,” she said. “You’ll be doing well to get a laugh out of my husband.”

At the end she came up and asked if she could give me a hug. “I’ve seen the whites of his molars,” she said, and I could see them too as he gave me a broad grin. It is a moment I will never forget.

 

Ronan, aged 38

I don’t let it define my life

Living with Parkinson’s can be very tough. From the initial shock of getting the diagnosis at the age of 30, to constantly getting people looking at you thinking: “Is he drunk?” or “Why is he walking like that?”

Through time, you learn to deal with these things. I find that the best way to deal with the condition is to keep active. Exercise as much as you can. I go to the gym and swimming pool frequently. I play golf, squash and cycle a lot as well. I find all these activities help immensely with both my physical and mental health.

Keep doing what you are doing. Keep in touch with friends and family. Do things that make you happy. Parkinson’s is a big part of my life but I don’t let it define my life.

 

Rachel, aged 37

I am so proud of my dad and what he achieved after all he goes through on a daily basis

My mam died when I was 1 and my dad brought me up alone. He was a hardworking physics teacher who was looking forward to his retirement years. 

My dad has struggled a lot since getting Parkinson’s, especially with his focus and sense of perception. Reading books and science articles are now a difficulty rather than a way to relax. 

Having Parkinson’s affects so much. It was a big milestone to have him walk me down the aisle on my wedding day last year and we raised money for Parkinson’s UK on the day. I was so proud of my dad and what he achieved after all he goes through on a daily basis.

 

Clare, aged 55

We are tough – we have to be!

In my experience, many of the symptoms of Parkinson’s are seemingly hidden.

The wider world doesn't appreciate the task at hand each morning to achieve readiness for a working day. Waking early to give time for the taking of medication and for it to start working, and then later the slowing that comes as each dose of medicine wears off, and needs topping up. I always know what time it is! “Walking in treacle” is how I describe it.

Never underestimate the strength of character of a person with Parkinson’s. We are tough – we have to be!

 

Victoria, aged 47

Because of you, I am afraid... But that’s not my story

Because of you, I am afraid, my ability to walk, move and even speak disappears without warning. Because of you, I become frozen, I am clumsy, sometimes the only way out of bed is to fall. Because of you, I get anxious when I take my daughter out, I don’t go out in the evening, I feel ugly.

But that’s not my story. Because of you, I have stood on the wings of a flying aeroplane, I exercise hard 5 times a week, I know I am surrounded by amazing people who love me. Because of you, I’ve zip wired down Snowdon, I’ve ridden roller coasters in Florida. Because of you, I am proud.

Thank you to everyone who shared their stories on World Parkinson’s Day. Together, we’re building understanding of Parkinson’s. Not just on World Parkinson’s Day, but every day. The more people who understand Parkinson’s, the more people who are inspired to help find a cure and transform lives. As we keep sharing our stories, the movement continues to grow.

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