“The impact of my Parkinson’s diagnosis on my sense of self has been huge” - David’s story
David lives in a small village north of Leeds in Yorkshire, and found out he had Parkinson’s 5 years ago.
His diagnosis signalled the end of his beloved career in outdoor pursuits - and for someone who admits that his physical fitness was everything to him, the impact on David’s sense of self has been significant.
Before I retired, I had spent the previous 20 years as a Mountain and Expedition leader. I led clients across deserts and through jungles around the world, covering over 10,000 boot and cycling miles.
I was at ease on mountains, even at high altitude on some of the world’s tallest mountains. Walking up Ben Nevis, the UK’s highest peak or the 3 Yorkshire Peaks, had always been easy training for me.
But then it began to get harder for no obvious reason - and that’s when it all came tumbling down.
Easy to dismiss
I first noticed something was wrong while driving. I was going to take my car to the garage with a recurring clutch problem. In actual fact, the pedal wasn’t being pushed down far enough - the first sign of weakness on my left-side.
I occasionally started tripping up stairs. I thought the culprit was the recent purchase of some thicker soled shoes. But again it proved to be my left foot not picking up properly. Most unusually I was also pulling muscles during certain simple physical activities.
As these issues weren’t happening all the time, it was easy for me to dismiss the symptoms as overuse. But I had also experienced restless legs for years and one morning my wife Jane mentioned that my involuntary leg movements were becoming more unpredictable. With a background in nursing, she suggested that I should be assessed for Parkinson’s, and 2 days later we saw my GP.
I was quietly confident that Jane was wrong. But after referral to a neurologist, undergoing assessments and ultimately a DaTSCAN, I received the bombshell letter of confirmation.
It was devastating news. The only consolation was when my consultant said that because I was operating at such a high level physically, the symptoms had been masked.
It took about 6 months to properly reveal my diagnosis to colleagues. It came as a shock to them, but I had to be truthful as I knew I couldn’t carry on with the expeditions.
The beginning of the end
I was leaving on an expedition to the Atlas Mountains in Morocco on the morning of my diagnosis. While the trip went without a hitch, it marked the beginning of the end of my outdoor career. Unable to lead on the hills from the front I slowly began to take the role of base camp coordinator on trips.
It took about 6 months to properly reveal my diagnosis to colleagues. It came as a shock to them, but I had to be truthful as I knew I couldn’t carry on with the expeditions.
The impact of my Parkinson’s diagnosis on both my career and my identity forged on the back of over 200 trips over 2 decades, has been huge. I was good at my job and the many letters of appreciation after trips from grateful clients reflect how good I was at motivating others. Sadly the many kind words in those letters are now a stark reminder that my physical skill is greatly diminished.
Saying goodbye
Jane and I met 10 years ago on a charity trip in Nepal, where we were walking 10-12 miles per day. Now we still walk 3-4 miles together, but the last half a mile sees my left leg begin to drag and I can't manage without the use of my Nordic walking poles. I’m very aware that these aids mark me out as an old person with a disability, a factor I find hard to accept.
I feel like I’ve aged 10 years in the last 5. In that time I have often wondered if I could raise money for Parkinson’s UK on an expedition. But then as that last half a mile on my local walks kicks in, the reality reminds me that I would only be a burden to anyone joining me in the process.
But I have been fortunate. I have rubbed shoulders with celebrities, felt the bite of giant wasps and fire ants in the jungle, and been nibbled by piranhas in the Amazon. I’ve narrowly escaped the bites of scorpions and camel spiders in the desert, become too friendly with a tarantula in Peru, kissed a camel and chased thieving capuchin monkeys with an umbrella! It has taken considerable time to accept that such adventures are over. Perhaps most importantly is the knowledge that I will never again stand on my beloved mountain summits and watch the sunrise.
I need to start today and make a new ending.
I’m not embarrassed I have Parkinson’s, but initially I was most definitely angry and in denial. Even now, each time my medication regime needs adjusting, I will always resist to start with. It’s the macho side of me trying to beat it - but I can’t.
New opportunities
When I was working, I regularly enjoyed briefing an audience of between 30 to 200 clients before an event. After my diagnosis however, I suddenly felt inadequate. My confidence had deserted me and I no longer felt in control of my body or my voice.
I’ve just begun giving presentations about my outdoor career to different local groups. It’s been really beneficial for me and during my talks I share the fact that I have Parkinson’s. So if I can raise awareness, that’s a very positive note.
I’m not embarrassed I have Parkinson’s, but initially I was most definitely angry and in denial. Even now, each time my medication regime needs adjusting, I will always resist to start with. It’s the macho side of me trying to beat it - but I can’t.
As I’ve turned 70, there’s a dawning realisation I won’t be here forever. Now I take each day as it comes. I just hope the deterioration isn’t as fast and as bad as it sometimes feels. I still regularly exercise, it’s part of my makeup and I am very aware it can help stave off some of the symptoms of Parkinson’s.
Overall I am doing well and I’ve got great friends and family around me. I have a lot to be thankful for. If it all goes wrong tomorrow, what a great life I’ve had.