When Parkinson’s gives your hand tremors, put a squeaky emu puppet on your hand and get people giggling.
Chris Hanson
Parky patient
Illustration by Sanja Mihovilovic
(1942 – 2016)
Diagnosed at 42
Three-time heavyweight champion and Olympic Champion who danced and dazzled in the ring. Though he conquered boxing, his toughest fight was with Parkinson’s. In 1997, he helped found the Muhammad Ali Parkinson’s Research Center, which brings Ali’s unbeatable spirit to clinical care, research, rehabilitation, education and support.
Find out more at maprc.com
Illustration by Malika Favre
Dress in bizarre colours, mix and match bold patterns, select statement shoes, choose earrings that coordinate but don’t match each other (same with socks), give them something really fun to look at when they are tempted to stare, and when they do, wink saucily and say, “can’t take your eyes off of me can you?”
Amy D. Carlson
Aged 44
Illustration by Sebastian Curi
Diagnosed at 46
After he was diagnosed with Young Onset Parkinson’s he ran a triathlon, won the first season of The Amazing Race Canada and became a public speaker. As Tim says himself: ‘With Parkinson’s, you never stop moving.’
Tim’s a real force of nature and encourages everyone to Live Your Best – a philosophy he truly lives by. Make sure to read his book “Perseverance”
Find out more at timsr.ca
or follow him @timhaguesr
Illustration by Jonathan Bruns
Dyskinesia hit whilst on the way to the pub.
Both feet twisting and being wrung out like damp tea towels. Stopped me in my tracks. This was serious. A gin and lemonade had my name on it. Tried my usual metaphorical box of tricks to get moving: counting steps – nope, music – nope, walking backwards – nope, crying – nope, whining – nope, but what about karaoke?
I put my headphones on and sang Wham Rap at the top of my voice (other musical genres are available) and immediately my feet unlocked and unclenched and I ran the length of the high street to the pub, singing at the top of my voice.
Julie Walker
Parky patient
Illustration by Hammo
Diagnosed at 52
Danish politician and Parky advocate who never lets her condition define her. Elisabeth’s fighting spirit continues to inspire the community on her blog, Cure4Parkinson, and as a DJ on Radio Parkies, where she talks seriously about living with the condition (between jazz, rock, and 80s chart hits).
This is on top of her day job, representing Rudersdal in the Municipal Council in Denmark, where she was re-elected in 2017. Her days are full – but she still finds time for a game of ping pong, which she’s played since she was 12. Challenge her at your peril. ‘I am not an appendix to Parkinson’s. Parkinson’s is an appendix to me.’
Follow Elisabeth
Illustration by Romain Laforet
Get special laces with pull cords to help with doing up your shoes.
Fiona Kennaugh
diagnosed at 47
Volunteer at Parkinson’s UK
Illustration by Carol Rollo
Be impatient with yourself and don’t settle. It would have been easy to hide in a corner put my slippers, plant myself in a chair and sit and do nothing for the rest of my life. But I go out and do more than I’ve ever done before. Because I feel like I’ve got nothing to lose. What’s the worst that can happen?
Emma Lawton
Creative director
Illustration by Rude
For probably the best part of 68 days at sea our main visual stimulation was the 360 degrees of ocean, usually an aqua blue colour with white cresting waves. If we were lucky we would see some wildlife, birds, flying fish and squid, Dorado, passing whales, the occasional boat or the lights of a plane. Stunning sunrises and epic sun sets, the real night sky and aqua phosphorescence. Imagine our joy when we first thought we caught a glimpse of Mauritius, a ghostly and barely visible shadow on the horizon. Or was it clouds?
Beside the rowing, my specialist skill was to be the ‘fixer’ of everything - the crew had quite literally put their faith and lives in my shaky hands to get them out of trouble. Was this wise? Of course it was, they don’t call me Practical Parky for nothing.
Already I’m being asked what next, will you row another ocean? Hey, how about a rest first, folks?
Robin Buttery
Technical instructor at De Montfort University in Leicester. Excerpt from ‘I’m The First Person With Parkinson’s To Row Across An Ocean’, Huffington Post
Illustration by Cody Lee Muir.
Being diagnosed with Juvenile Rheumatoid Arthritis in her teens, Colon Cancer in her 20’s and Parkinson’s disease in her 30’s, Allison is no stranger to a challenge.
In 2010, she launched ‘Parkinson’s in Balance’, which offers free support groups, fitness classes and events to the community. Her Perky Parkie Blog also continues to offer a fresh, positive perspective for fellow Parkys. And on top of that, she’s a California Licensed Marriage and Family Therapist, a Wellness Life coach and a personal trainer.
When people ask her, “How do you stay strong as you endure the decline of your health at such a young age?” Her response is, “Lots of Frozen Yogurt and being able to laugh at myself.”
Illustration by Svitlana Dudarenko
‘So, what fun things have you been up to lately’ is the finest question a healthcare professional can ask. It also happens to be the finest question you can ask yourself.
Mariette Robijn
Copywriter & Parky advocate
Illustration by Biff
Diagnosed at 79
M*A*S*H. The Aviator. West Wing. He acts, he writes, he directs.
He wins Golden Globes and Emmys. He’s the creator of the Alda Method®, which is redefining the way scientists communicate. He podcasts on his show Clear + Vivid. He juggles many jobs. He also juggles.
Books:
- If I understood you, would I have this look on my face?
- Things I have overheard while talking to myself
- Radiance
- Never have your dog stuffed
Illustration by Mat Voyce
Play video games. Yes, video games. When was the last time you played Super Mario Brothers?
Researchers at Purdue University are now looking at the benefits of use the Wii games to improve Parkinson’s patients’ movement, speech, and quality of life. So dig out the old Nintendo Wii system gathering dust somewhere in your house and have a good time.
Sharon Krischer
Parky advocate & blogger
Illustration by Serge Seidlitz
My expressionless face helps create an ambience for independent, self-sponsored exploration. I reveal neither approval nor disapproval. It creates space for my pupils. They fill the empty space with relaxed but on-target outbursts.
Thank you, Parkinson’s disease! I’ve been trying to master this technique for years!
Bruce Ballard
Professional Development Specialist at the Bronx Charter School for Better Learning
Illustration by Maz MacCorkle
When travelling on a plane and you think you may need assistance getting around the airport, give the airline a call a few weeks before to explain. They might be able to give you a lift from the check in desk and priority boarding too.
Emma Edwards
Parkinson’s specialist nurse, Cornwall Partnership Trust
Illustration by Jamie Knight
Diagnosed at 71
Sir Big Yin.
Legendary comedian.
Musician and entertainer.
Illustration by Jonas Bergstrand
Methodology:
One person (me) cycling every second day, more than I had for the previous 10 years or more. Cycle up the track, around by loch and down the other side, distance around 8 miles. Dogs carrying sticks running alongside bike for that extra bit of danger
Assumptions:
Parkinson’s is a degenerative neurological disorder
Cycling up hills keeps you fit and the fitter you are the more Parkinson’s has to work to erode that fitness.
Conclusions:
Dogs have no sense
Cycling uphill gets you tired quickly
Going wheeeee down a steep bumpy hill is like being free from Parkinson’s
John McPhee
Parky advocate
Illustration by Studio Spilsbury
Diagnosed at 29
Actor. Author. Producer. Founder of the Michael J. Fox Foundation. He inspires millions with his strength and spirit, he raises hundreds of millions for Parkinson’s research, and he time travels. Nobody calls him chicken.
Books:
- Lucky Man: A Memoir
- A Funny Thing Happened on the Way to Future
- Always Looking Up
Illustration by gemmacorrell
Actress and drama teacher
Diagnosed at 50
Sue’s diagnosis was a complete shock, not helped by the cold and unfeeling way in which it was delivered. But an unlikely friendship with a rebellious teenager with ADHD, and Parkour as his outlet, sparked the idea for writing a play.
Kinetics is the story of two people at polar opposites, but both with the desire to move. The play is now a film, available on DVD and continues to raise awareness of what it is like to live with Parkinson’s. It is also used as a training resource for medical professionals as well as being a piece of entertainment in its own right.
Sue’s motto: accept, adapt, adjust
Found out more at kineticsfilm.com
Illustration by Ryan McAmis
Because who needs a cocktail shaker when you've got Parkinson's?
1 measure Vodka
1 measure Orange Juice
1 measure Cranberry Juice
1/3 measure Peach Schnapps
Beverly Ribaudo
Author & songwriter
Illustration by Yveta Kroupova
Founder and Country Director of Parkinson’s Disease Foundation Uganda, the only organization in Uganda supporting Parky patients. In a country with few neurologists, Didi is raising awareness, educating people and helping them fight Parky’s with a good diet, yoga and tai-chi, and by quite literally fighting it through boxing.
Illustration by Piero Corva
Diagnosed at 44
Anchorman who doesn’t let Parkinson’s anchor him. When he’s not presenting darts and boxing on TV, he’s striding across the Yorkshire Dales, completing all 200 miles of England’s Coast to Coast challenge and raising hundreds of thousands for Parkinson’s UK. And when he’s not doing that, he’s at a Bruce Springsteen concert.
Illustration by claydisarray
I have a list of do’s and don’ts.
The only don’t is don’t give up.
Elizabeth-Anne Taylor
Parky advocate
Illustration by Adam Hayes
Walking sticks. Good for a frozen gait. Good for getting free seats on public transport.
Sara Riggare
PhD student & Parky advocate
Illustration by Alva Skog
She’s all things speech and song in Parkinson’s. She provides therapy to patients with speech and swallowing difficulties at the Institute of Neurology at UCL. She organises the Lee Silverman Voice Treatment (LSVT) Workshop in London twice a year and she’s a trustee for the Sing For Joy choir, made up of people with Parkinson’s. In the truest sense, Elina makes sure patients are heard.
e.tripoliti@ucl.ac.uk
lsvtglobal.com
singforjoychoirs.org.uk
Illustration by dustincoxdesign_
One of PD’s anxiety symptoms is catastrophising. For me it manifests when minor physical things occur – a twinge quickly becomes something serious in my head and panic sets in. I have to be really tough with myself to bring the anxiety down and feel in control again. It’s worse when I am stressed or tired. When these thoughts intrude I try to take better care of myself emotionally and physically. It also really helps to talk to someone about your fears as well. Don’t be afraid of expressing your thoughts. The more we talk the more we can cope with PD and the better those around can support us on this journey.
Michelle Harvey
Parky advocate & blogger
Illustration by Nick Chaffe
If you have trouble with writing, get a piece of paper and write: the quick brown fox jumped over the lazy sleeping dog 12345678910. Then sign your name.
Now pretend you’re writing that on a giant blackboard in the air, making the letters and numbers as big as you can. Now try writing on paper again. You’ll be amazed at the result.
Beverly Ribaudo
Author & songwriter
Illustration by Tash Willcocks
Diagnosed at 58
Co-writer of The Vicar of Dibley and the film version of Roald Dahl’s Esio Trot. Also worked on Mrs Brown’s Boys, Spitting Image and the radio show I’m Sorry I Haven’t A Clue. Award-winning presenter of the documentary Parkinson’s: The Funny Side. Now started doing stand-up while he can still stand.
Illustration by Stanley Chow
Award-winning anchor on Channel 9 News in Sydney. Gaby has been a journalist for twenty years and currently reports on healthcare, breaking huge stories on stem cell research, cancer treatments and the role of deep brain stimulation in Parkinson’s, all while living with Parkinson’s. Which is the name of her book –Living with Parkinson’s: Diagnosis, Treatment and Management.
Illustration by elyelyilustra
Communicate. Don’t keep things bottled up. People with Parkinson’s are like fizzy drinks. They lose their sparkle if left festering in a cupboard for too long. You’d be amazed how people react to an open and honest approach to your condition.
Tom Isaacs
Cure Parkinson’s Trust Founder
Illustration by Petra Stefankova
The first time I met Tom Isaacs was playing golf with him at the Berkshire. Immediately I was blown away by the fact that he refused to give up a sport he loved just because he had Parky’s. On a par 4 he had about 100 yards left and he played a beautiful shot that went straight in the hole. I threw my arms in the air and turned around to give him a high five only to notice that he had disappeared. About 5 seconds pass with me being very confused, then a bush nearby starts to shake and Tom comes bounding out from the middle of it. He threw his hands up in the air and said ‘Sorry about that, I decided to celebrate with a double backward roll down this hill’.
That’s how he lived his life and it’s how I’ll always remember him.
Mike Tindall remembering Tom Isaacs
Illustration by Call Me George
Diagnosed at 29
Multi-talented creative director who continues to design, draw and craft her way through Parkinson’s. She’s written a book about it, ‘Dropping the P Bomb’, and continues to captivate people on stage, whether it’s discussing digital trends, tech or tremors.
Illustration by Paper Hawk
Don’t panic.
Adapt but still but make plans.
Smile before you cry.
Stay active.
Keep positive.
Always have something to look forward to.
Aaron Jon Milosevic
Parky patient
Illustration by Andy Smith
Sometimes when I use my sewing machine, I don't have to use the zig-zag function, I just let my shaky hands do it for me.
Sue Woodfield
Parky advocate
Illustration by sew_walton
Diagnosed at 49
Part scientist, part artist, Jon is as happy in the lab researching neuroscience as he is in the studio working with glass, creating intricate sculptures, bowls and windows. He’s also an avid photographer and astronomer. And he writes. You’d forget he has Parkinson’s.
Tweet Jon Stamford
Illustration by Emma Evans
'It’s a great day when you wax your moustache and manage to keep both eyebrows.'
Colleen Henderson-Heywood
Parky advocate & Marmite lover
Illustration by Ivana Šateková
I rarely wear heels now, although I do have a trainer collection that would rival Kanye West.
Emma Lawton
Creative Director
Illustration by Genie Barnie
Sing loudly and often. It makes your heart happy and it’s good for your vocal chords.
Vicki Dillon
Parky Advocate
Illustration by Alfie Gallagher
Prof. Thomas Foltynie
Consultant neurologist
Illustration by Cachetejack
If you can’t move kick some socks. Roll them up, stick them between your feet and kick away. Guaranteed it will get you moving and also make you a lot of friends at the airport.
David Jones
Parkinson’s Movement
Illustration by Adam Forster
Mealtimes take on a comically unpredictable air. Always able to lighten even my darkest moods, my family guess openly how much food will end up on the floor. A tired and tremulous father facing Spaghetti Bolognese has them scurrying for the camcorder, with barely concealed glee. We take our seats, I reach for the parmesan and, ten seconds later, the table looks like a nativity scene. We are all sobbing with laughter.
Jon Stamford
Neuroscientist
Illustration by Hanwarr
Diagnosed at 7
Photographer, activist, tower climber and all–round inspirer. Matt’s incredible positivity and near-constant smile always wins out over his Parkinson’s.
Tweet Matt Eagles
Illustration by Mato Hanchild
Parkinson's has gifted me the opportunity to meet, and relate on so many levels, with some really wonderful people who continue to inspire me to keep talking, to never stop and to keep fighting every day.
David Sangster
Parky advocate
Illustration by Linzie Hunter
I found it kind of cool looking at my brain and seeing the pretty colours which were the dopamine. Admittedly the doctor told me they were the wrong colours, which confirmed PD, but it was still cool.
Nicholas Crate
Assistant principal at Internationella Engelska Skolan, Lund (Looking at the results of his DAT-Scan)
Illustration by Ollie Hirst
A urine infection can make you feel rotten, and make your Parky’s symptoms temporarily worse. So always have a sterile pot at home if you are prone to infections, GP receptionists get a bit picky if you come in with a jam jar full of wee.
Emma Edwards
Parkinson’s specialist nurse, Cornwall Partnership Trust
Illustration by Melanie Edwards
Next time you’re genuinely plastered and about to be loaded into a police van, play your Parky card and scream: “I’m not drunk, I have Parkinson’s” until they let you go.
Paul Mayhew-Archer
Comedy writer
Tweet Paul
Illustration by Elle Dunn
Seek out those who have walked in your shoes. They are the fountain of knowledge and the best support ever.
Vicki Dillon
Parky advocate & blogger
Illustration by Priya Mistry
It can take me ages to get dressed in a morning, and sometimes I have to rope in my wife to give me a hand. She does like to laugh at me putting my underpants on though. I look like I’m doing a really weird dance. I’ll save it for the privacy of my own home though, I don’t think the public are quite ready for it yet.
Matt Eagles
Parky advocate & spokesperson
Illustration by Will Heldt
With my shakes, I cut a strange figure in the field, as I stand trembling, shuffling from one foot to the other. But that’s the thing with PD. The tremors vanish when you move. A quivering jelly can sometimes execute a spectacular diving catch – as I did in one game to the amazement of my team mates. And myself.
Jon Stamford
Neuroscientist
Illustration by Ben Tallon
Diagnosed at 32
Is in no particular order of priority (except for the first one):
Proud mother. Engineer. SwedishPhD student in Selfcare for Parkinson’s Disease at Health Informatics Center Karolinska Institutet, Stockholm, Sweden. Extremely stubborn (alternatively highly motivated). True believer in the power of social media. Optimistic realist with Parkinson’s
(Excerpt)
Together we make light of Parky
My shaking left hand they tease
Hold my drink in your right they say
And give a gentle squeeze
When I take a bath they say
Throw some washing in and shake
Save on power and sell the washer
Of Parky such jokes we make
Jovo Cirkovic
Author & poet
Illustration by Asuka Nagata
It doesn't matter what exercise you do for your Parkinson's, it's doing it that's important. Why not get the goggles out and try a few lengths?
Jonny Acheson
Parky advocate & blogger
Illustration by ruanoide
Keep hydrated. Parkinson’s medication has the tendency to shrivel us up like sun dried tomatoes and generally speaking, our medication is far more effective if taken with loads of water. Also get a good balance of exercise, diet and sleep. These things are just as important as medication to your overall wellbeing.
Tom Isaacs
Cure Parkinson's Trust founder
Illustration by Annette Jones
Keep regular. Constipation is common with Parkinson’s and can affect how your medication works. Talk to your specialist if you need a hand in this area – so to speak.
Emma Edwards
Parkinson’s specialist nurse, Cornwall Partnership Trust
Illustration by Mick Whippet
Be a guru of slow. Speed is not all it’s cracked up to be! And if your walk doesn't work for you, try another one. Make one up or copy some else's.
Paul Mac
Collaborative artist
Illustration by Danny Capozzi
Diagnosed at 26
Co-founder and president of The Cure Parkinson’s Trust, a charity supporting ground-breaking science and medicine that is already achieving exceptionally important breakthroughs.
After 7 years with the illness, Tom was unable to walk without the aid of medication. Yet still he decided to walk 4,500 miles around Britain’s coastline to raise awareness for Parkinson’s. His book ‘Shake Well Before Use’is the tale of this journey and how Tom learned to live with and laugh at the ravages of his disease. His courage, determination and infectious zest for life was an inspiration to all.
cureparkinsons.org.uk
parkinsonsmovement.com
#tomsvision
Illustration by brunomangyoku
Beverly Ribaudo
Author & songwriter
Illustration by GHRobson
After visiting the ladies room at a club, I took a shortcut back along the dancefloor. All of a sudden, people started clapping me. They’d called an impromptu dance contest and everyone thought I was dancing. Thriller was playing. They were shouting “Look - she’s doing the Mummy.” So I got into the spirit of things and tried to time my steps to the music (not easy). And would you believe it – I was declared the winner!
Beverly Ribaudo
Author & songwriter
Illustration by Nomi
When you can’t walk forwards try walking backwards. Research shows that walking backwards is good for your health. For me it’s excellent way to move when I can’t do anything else. It’s less good for your health unless you have some wing mirrors, so make sure someone’s watching when you first try it.
David Ashford Jones
Parky advocate & former pharma executive
Illustration by Matthew Harding
My tremors make it really hard for me to do the washing up. I make a right mess and break everything. I’ve actually broke all the plates in the dinner set we were given as a wedding present. So my wife has now banned me from washing up, which is great, because I hate washing up. So it’s a Parky win.
Matt Eagles
Parky advocate & spokesperson
Illustration by jw_illustration
A consultant neurologist at the Radboud University Medical Center in the Netherlands, Bas is tirelessly working to improve healthcare in Parkinson’s.
He’s the co-author of the book Ending Parkinson’s Disease, and he’s won the National Healthcare Hero Award and Tom Isaacs Award for creating ParkinsonNet, which is helping patients and doctors in improving care and communication. He’s also discovered that some Parky people can ride bikes even if they struggle with walking.
What a guy.
Illustration by Gus Scott
When travelling anywhere these days my walking stick helps me get a seat on crowded trains. Most people will offer me their seat. Sometimes I accept but at other times, if I’m feeling well, I will decline. I was on the Underground the other day waiting at Southwark station. A train pulled in, the doors opened and, as I stepped aboard, a young man started to get to his feet and gestured to his seat. I felt okay and shook my head in polite refusal. Again he gestured to the seat. It was very kind of him but I made my point by gently pushing him back down and thanking him. I vaguely heard him say something as the train doors closed.
“I’m sorry,” I said as the train moved.
“I didn’t catch that.”
“That was my stop,” he said.
Jon Stamford
Neuroscientist
Illustration by Shotopop
Concentrate on the things you can do. The days of winning egg and spoon races are over so don’t torture yourself. There are endless possibilities to live a full and rewarding life with Parkinson’s. Just find the things that fulfil you the most.
Tom Isaacs
Cure Parkinson’s Trust founder
Illustration by Ellie Bassford
Sleeping can be an issue for many people with Parkinson’s and nothing worse if you can’t sleep for cramps or restless legs. Eating a banana before bed can help. Or even a glass of tonic water.
Scott at Edinburgh Young Onset Parkinson’s Support Group
I decided to let people know I have Parkinson’s to encourage others to take action. My life is full. I take boxing lessons, I act, I give talks, I do my podcast, which I love. If you get a diagnosis, keep moving!
Alan Alda
Actor, 82, best known for his roles in M*A*S*H, The West Wing. Diagnosed at the age of 79
Illustration by Genna Douglas
Childrenswear designer & Parky advocate
