An interview with John MacPhee from The Long Walk for Parkinson’s on August 21, 2023 by George Ackerman, Ph.D, J.D.
I’ve been diagnosed with a weak bladder for 14 years. I was a mild mannered, not rock the boat kind of person I worked for the Sottish Tourist Board and act quite liked my job. It was a mixture of client liaison, sales, and quality control. This meant staying in numerous B&Bs, Guest Houses and Hotels to award them their ‘stars’ for the following year. It was a great job for someone who doesn’t like routine and being stuck in an office. All was well, I was robustly healthy and even if I looked at my date of birth it was hard for me to believe I was in my mid-forties. My hand had developed a shake and I had thought after it hadn’t cleared up I would be best going to the doctor to get my ‘trapped nerve’ looked at my first appointment with the GP ended with him saying “Don’t worry it’s not Parkinsons “ 3 worry free months later he was telling me that I had PD. I thought, why is he stealing my future, was my first reaction. However, this very quickly turned into how I would thrive in my new, albeit unwanted, circumstance.
I had to develop my instinct for optimism and really worked hard to only focus on what I could control or affect and accept what I couldn’t. This is a choice and it’s a very important decision to try and live by.
I set about making my own way into this new and very different world of pd. I was determined to see the perks and ignore or accept the downsides. The downs will find you in any case but the perks will be nowhere to be found if you are not staying alert to seek them out. Oh yeah, my name’s John and I’m Scottish which explains my strange take on things.
Please tell me a little about your background and what got you involved with awareness.
My journey with pd awareness has been truly a rollercoaster, I’ve made so many friends with far greater minds and inspirational qualities than I could ever dream of but by association I have been able to make my own way, and a few have been through my love for quirky adventures alongside me.
I have changed from my initial thought about bridging the divide between the Parkinsons community and the public and there are times now that I wince at my naivety to think I could change the way the rest of the world understands PD.
Can you tell me more about your advocacy?
Advocacy for me has always been to try and help people understand a little more about what life is like for Parkinsons and what a difficult condition it is to deal with especially for the family of the person with PD. Try to take opportunities to reach out and whether this is speaking to businesses, local groups and even being filmed for short TV documentary along with my forays into the world of long distance walking which has been a catalyst for forcing my way into various media to get awareness on the agenda
What is your passion and how did you get involved in Parkinson’s awareness and hope for a cure?
My family and my dogs are my full-time passion. With 4 grown-up kids all developing or setting out magnificently in their own lives there is no room to have selfish passions. I’ll take walking the dogs and being able to listen to some Robert Burns poetry once a year.
I would be happy now with a sticking plaster fix that keeps me mobile enough to be able to fend for myself for the next couple of decades. After that? Who knows
What type of goals do individuals with Parkinson’s awareness have when working with you?
I love surrounding myself with people who are simply more driven than myself. It makes my motivation and commitment so much more effective when I can chase the pack. A great example of this is an Icelandic gentleman (I use the term in its loosest form) called Snorri. Those of you lucky enough to have been touched by his undying resilience will always be amazed by his courage. The knocks, the bruises, the bone breaks, and the constant pain hardly register in the Viking man’s psyche. He takes every opportunity to skip, stretch, cycle, or generally fill the surrounding area with gusto and pure joy of life. I try to be in his shadow, that’s a high level of achievement for the average Joe like me.
What effect can your advocacy have on an individual with Parkinson’s awareness?
Advocacy is a strong tool but is wielded in some very ineffective ways and this realization hits home with the annual Parkinson’s Awareness Day/week/month when highly motivated people and groups run, jump, cycle, walk, dance, sing or whatever else they do. It’s great and the energy levels across the globe.
What would you like to see as a future goal for your advocacy?
I would love to see a concentrated focus and agreement on what we are trying to achieve in our outputs. Awareness is vague; we can’t even agree what PD is or what causes it if unilateral action could be agreed then there would be a chance to move the public perception dial but on what topic? The awareness must have an outcome to be successful.
What events do you participate in?
Over the last decade I have walked the length of the UK in straight line. I have walked across the UK, taken part in the last bit of New York Toronto cycled in Iceland and walked with marathon man Bill Bucklew from north Scotland to London. It was walking with bill that the
Penny dropped about awareness when we realized that we could make so much more difference when we interacted face to face with the people we met on our challenges and were able to share our experiences regarding pd directly with them and I could witness their change of attitude to the condition.
How can someone get in touch? What is your website?
How can others become advocates?
Follow your gut and take part, whatever that means to you.
If you had one final statement or quote you could leave for the Parkinson community, what would it be?
Be aware and cherish what you can do.