Facing Parkinson's with spirit and determination - Ken's story
When Ken was told he had Parkinson’s 8 years ago, he refused to be beaten. He began trying to understand as much as he could about the condition and remains determined to use what he’s learnt to keep fighting back.
"Some people say that I’m a stubborn so and so!” Ken laughs as he recalls his initial reaction to receiving the news he had Parkinson’s.
When Ken was 18, he attended a school, which had the motto, ‘To serve, to strive and not to yield’. Since then, Ken has always tried to live his life by that principle and the challenge of Parkinson’s has been no different.
“The consultant I saw was a blunt Yorkshire man and he told me, ‘It’s Parkinson’s. Your best hope is to take the medications prescribed for you, and you might get 2 or 3 good years,’” Ken says. “Blow that, I thought!
“I will never accept there is nothing I can do about a problem facing me. I decided there and then that I’d prove him wrong,” Ken says.
Helping himself
Ken set about educating himself about Parkinson’s and discovered things he could do to help.
He read that protein can interfere with how well levodopa is absorbed, so he looked at his diet. Now he tries to avoid protein in dairy and meat products during the day when his ‘off’ periods are worse.
“Apart from eggs, there are plenty of plant-based alternatives on the market which, to my taste, are just as good, if not better,” says Ken. “This approach might not work for everyone. But for me, I now have a better balance of ‘on/off ’ periods during the day.”
Physical activity and exercise has been another way Ken manages his symptoms. “I didn’t know much about how exercise can help Parkinson’s symptoms for around 3 years following my diagnosis,” Ken admits. “Then a friend told me about an exercise programme for Parkinson’s. The exercise was hard, but the benefits to both my physical and mental health have been tremendous.
“I’ve since done boxercise classes and, at the other extreme, I do a daily online ‘wake up and stretch’ class. It’s very useful to a stiff, creaking 75-year-old like me!
“With Parkinson’s, I think you need to find out as much about it as you can, accept the diagnosis – but don’t accept the prognosis. You have the condition, but you need to fight back. There is always something you can do.”
...if there’s one lesson I’ve learned, it’s that you only get one go at life, so don’t waste this glorious opportunity by being negative and miserable.
Facing the challenge
Ken has become really interested in social and communication problems in Parkinson’s and understands the impact these issues can have.
“These problems can be embarrassing and people stop socialising,” explains Ken. “So I was pleased to help organise and run the 4 drop-in cafes established by our local group, where people can get together in a friendly environment and share tips and ideas about managing their symptoms.”
For those whose voices have been affected by the condition, Ken helped establish the first Live Loud! classes in Cardiff. At the moment, he’s particularly enjoying preparing a ‘Live Loud Haka’, based on the traditional Māori challenge performed by the All Blacks before a rugby game, for the class to do.
Recently, Ken realised the subject matter was closer to home than he first thought. “I had noticed people saying ‘Pardon?’ to me more often when I spoke, but I had a rude awakening during a research webinar,” Ken admits.
“I saw a recording of my presentation at the online event, and I didn’t recognise myself. It definitely made me think that we should see ourselves as others see us – and do something about it, if necessary!”
Ken’s philosophical about the challenges the condition presents. “Another thing that Parkinson’s has stolen from me is my smile,” Ken says. “I’m a fairly cheerful chappy, always ready to have a laugh and a smile. But now, even though I’m smiling inside, I can have this grumpy fixed Parkinson’s face.
“But if there’s one lesson I’ve learned, it’s that you only get one go at life, so don’t waste this glorious opportunity by being negative and miserable. There’s a funny side to every situation – sometimes it might just take a bit of imagination to find it!”
There’s the saying ‘Where there’s life, there’s hope’. Well, I firmly believe that this can be turned around to, ‘Where there’s hope, there’s life!’
Unwavering support
Ken has been married to Kate for 43 years and together they have 3 daughters and 3 grandchildren. Their support has proved invaluable to Ken.
“I can’t find words good enough to describe how well Kate looks after me,” says Ken. “She’s the type of woman who never complains and she doesn’t let me mope, she gets me up and about.”
Ken is an active member of his local Parkinson’s UK group in Cardiff, but it was actually Kate who first found out about them. “When I was first diagnosed, I didn’t know anyone else with Parkinson’s,” Ken remembers. “By complete coincidence, Kate saw a local group meeting in the library and asked who they were.” Reluctant at the start, Ken now credits the group with giving him the drive to keep fighting.
Ken’s children are also on hand for moral support and are another source of inspiration. “My youngest daughter, Kiryn, ran the London Marathon for Parkinson’s UK last year. She trained for a year, getting up at 5am and going for runs before work. Her unswerving dedication really inspired me.”
Hope
Ken is a passionate supporter of research, something driven out of his natural sense of curiosity.
“I’m a great believer in the saying, ‘If you want to win the battle, you’ve got to know your enemy,’” Ken explains. “I don’t like not knowing answers to questions I have – and the more I know, the more I can fight.”
Ken has volunteered for several questionnaire-based studies over the last few years. He is currently involved in 2 clinical trials. “I have definitely put my money where my mouth is!
“Getting involved in research doesn’t have to mean taking a new drug. It could simply mean reporting how you are managing day-to-day, or using wearable technology to assess your movements,” he explains.
“In my opinion, everybody who can, should get involved with research in some way. Who knows? Your input could be the catalyst that leads researchers to a breakthrough.
“There’s the saying ‘Where there’s life, there’s hope’. Well, I firmly believe that this can be turned around to, ‘Where there’s hope, there’s life!’ A cure is not likely in my lifetime, but let’s give future generations a chance.”