UK writer and fundraiser Julie Walker was diagnosed with Parkinson’s at the age of 44, and has shared her video experiences as part of the #UniteForParkinsons 2018 campaign. She talks to the EPDA about the challenges of a young onset diagnosis, her awareness-raising blogging and the unexpected benefits of playing tennis as a PwP.
Julie Walker, 50, is a writer and fundraiser living in Hertfordshire, the UK. She is involved with her local Parkinson’s UK support group in Bishop’s Stortford, and Parkinson’s charities including The Cure Parkinson’s Trust and Spotlight YOPD. Julie was diagnosed with Parkinson’s in 2012, aged 44.
Diagnosed at a younger age, it is likely that we will be living with advanced symptoms for longer.
When were you diagnosed with Parkinson’s, and how did your diagnosis come about?
“In early 2012, I noticed that occasionally my left hand had difficulty twiddling a fork and my left arm shook. When my left hand sometimes didn’t respond while touch typing, I finally took notice. After eight months of medical appointments, the tremor and dexterity hadn’t improved – a trapped nerve was my best guess. However, a referral to a neurosurgeon and an MRI scan discounted this. I was then referred to a neurologist. After just a few minutes I was diagnosed with early-onset Parkinson’s, at the age of 44.”
When I was first diagnosed it was really important that I met someone who was facing similar challenges to myself. It is important for wellbeing that people do not feel alone.
What challenges do younger people with Parkinson’s face?
“Diagnosed at a younger age, it is likely that we will be living with advanced symptoms for longer. We will also be on medication for longer, which brings its own side effects. Surgery may be an option, such as deep brain stimulation (DBS). Many diagnosed at an early age will be attempting to still work full time. They may have children and be running a family home.
“Personally, I am guilty of trying to do things as I did pre-diagnosis. It is very frustrating and upsetting to find that things have changed, and I need to learn to pace myself. At any age, I believe it is important to be in contact with people who can support you. When I was first diagnosed it was really important that I met someone who was facing similar challenges to myself. It is important for wellbeing that people do not feel alone,especially as the symptoms are so unpredictable and difficult to understand. Having others to speak to who are dealing with similar life situations (such as working or bringing up children) is really useful.”
How did your blog, Parkinality, come about?
“I started my blog in January 2017 to try to explain Parkinson’s to close family and friends. It is such a difficult condition to explain – if you haven’t got it, you don’t understand it. Even if you have got it, there are so many symptoms that someone else could have completely different symptoms. This blog is just about me and my experience of Parkinson’s.
“When I started it, I had no real experience of writing, other than a few funny poems for people’s birthdays. I have always wanted to do something creative, and I love words. The title of my blog, Parkinality, is a made-up word meaning ‘Parkinson’s Personality’ – I hope that one day it will be a ‘proper’ word in the dictionary.
“I have now been writing the blog for 16 months and have lots of subscribers and regular readers. I wanted to let people know that they are not alone, and to raise awareness. The more Parkinson’s is written and talked about, the more likely it will become a ‘fashionable’ condition. This means people will fundraise, charities will support people with Parkinson’s, and ultimately a cure will be found.”
In what ways does writing help you?
“I try to write with humour and put a positive spin on events. When the symptoms stop me in my tracks, I think of my blog and how I would write about it to make it informative but readable. This is often a challenge (Parkinson’s is a terrible condition, and it affects every part of every single day).
“The editor of the local paper, Bishop’s Stortford Independent, read my blog, liked it and asked me to write a fortnightly column. It is a whole page, with my photo at the top. Through that I am sometimes recognised locally – which is nice, if a little unusual! I have no experience of journalism, and it is a great opportunity to raise awareness.
“If anyone with Parkinson’s is thinking about becoming more creative, I say go for it. You don’t have to show it to anyone, and who knows where it will lead. My rule is, ‘I will write it as long as I enjoy it and as long as it adds something to my life and helps me’.
“In addition to my blog and newspaper column, I also have some other writing projects in the pipeline. I am also collaborating on a musical about living with Parkinson’s, which is in its early stages of writing. It will be sad, happy, positive and uplifting, and funny in places!”
You began playing tennis after you were diagnosed – how does it help you?
“Pre-diagnosis I exercised regularly, but I didn’t play any sport. I discovered tennis five years ago on a sporting activity holiday. I had a choice between sailing and tennis, and I figured I was less likely to drown playing tennis!
“I had never played before, but I found straightaway that I can throw and catch the ball very quickly. Now I play twice a week. I often arrive with a walking stick, but once my racket is in my hand I can run and change direction, and my hand-eye coordination is good. When my medication is wearing off my walking is bad, but I find my tennis is still good, although difficult. While I am playing tennis, I feel it is nothing to do with Parkinson’s. I feel free and that I am holding my own with non-Parkinson’s people. Exercise and learning new skills is so important – and tennis fulfils both those criteria. It makes me feel good.”
Tells us about the video you submitted for the World Parkinson’s Day #UniteForParkinsons campaign.
“I was contacted about the campaign by the EPDA when they read my blog, and I submitted some videos. I feel it is important to show the unpredictability of the condition: how I can hardly walk one minute, but am able to play tennis. There is a lot of misunderstanding about Parkinson’s, and the videos show clearly how the condition is unpredictable and changeable.
“For World Parkinson’s Day, I will also be encouraging friends and family to put the twibbon on their social media profile. I plan to write an extra piece in my blog and newspaper column to mark the occasion, and I will also be wearing a Parkinson’s t-shirt that day!”
Are you sharing your story as part of the #UniteForParkinsons campaign? What are your plans for World Parkinson’s Day? Have you found writing or other means of being creative helpful in dealing with your experience of Parkinson’s? Email firstname.lastname@example.org and tell us your stories.
The EPDA is sharing this article for information purposes only; it does not represent the EPDA’s views and is not an endorsement by the EPDA of any particular treatments, therapies or products.