My Parkinson’s Journey with James
This is my story. I’m Alison, or Julian, Geoff, or Rune. I could be Steve or possibly Denise, or even Erik. I am any one of the nine people with Young Parkinson’s (PD) cycling from Brighton to Barcelona for the World Parkinson Congress this summer with James.
My travelling companion took his name from James Parkinson who, in 1817, first identified what he described as the shaking palsy. If I’m being perfectly honest James is not a partner you, or anyone would actively choose to journey with.
But travel we must – he was most insistent that he was coming along for this trip and for the rest of my life for that matter. And here is the wonderful irony - without James I wouldn’t be on this trip at all. His global reach has corralled a band of brothers and sisters from around the world and thrust us together for an epic adventure to meet his other friends.
From Australia to Canada, Norway, to the USA and UK - a group that has primarily only met via Zoom (pandemic anyone?) will be gathering in Brighton, in June to cycle due south to Spain.
Each summer, since medieval times, pilgrims have trekked from all over Europe for the Feast of a Saintly James in Santiago de Compostela in Northern Spain. Our Spanish ‘pilgrimage’ is to the World Parkinson Congress in Barcelona where everybody will be talking about Jamie, sorry James. To keep things simple, we have set ourselves two clear objectives:
1. Get there.
2. See objective one.
Actually, there is another important aim, which is to raise awareness of PD.
We need to talk about James
Here are a few stats and facts to put things in context about the size and shape of my travelling companion. And let’s be clear about this, he’s a big lad, not that I want to body shame, you understand.
The prevalence of PD has doubled in the last 25 years, with as many as 10m people around the world living with James. This includes about 1 million Americans, 145,000 Britons and a similar number of Australians. About 38 Australians are diagnosed every day and 1 in every 37 people in the UK will be diagnosed with Parkinson’s in their lifetime. PD is now the fastest growing neurological disorder. According to one study it could be a pandemic when “for most of human history, Parkinson's has been a rare disorder.” Be in no doubt, there will be lots to discuss and discover in Barcelona.
Cycling with Parkinson’s – three things those without PD need to know about me
There are over 40 symptoms associated with Parkinson’s. From a tremor or stiffness, to problems with sleep and mental health. Everyone’s experience is different.
It’s OK, I’m not going to list the lot, just point out a few that matter when I’m on my bike. This bit is really for the rest of the non-PD members of the group who are on the trip.
Exercise is really important to me. PD research shows that about 2.5 hours of exercise each week can help can maintain and improve mobility, flexibility and balance. That has just made you assess your own fitness programme, right? Not to worry, I don’t judge – we’ll keep it between us girls.
1. I’m laughing on the inside, possibly…
Fun fact: Non-verbal communication is far more important in the way that we interact than what we actually say. About 55% of communication relating to feelings and attitudes is in facial expression. This can be a BIG problem for me as I have Parkinson’s Mask it means that like many of my other muscles there is a stiffness in my face leading to a blank expression. My best friend calls this my ‘resting b1tch face’ – what are friends for, eh?
In practical terms the mask means that other non-PD members of the cycling group have no obvious signals as to my mood or whether I’m ready to go or absolutely cooked. If in doubt, go for the latter option. PD can cause extreme fatigue. The kind of physical and mental exhaustion that makes even the simplest everyday task impossible, let alone a cycle ride that is the thick end of 1000 miles.
2. On or off?
Before my diagnosis I was one of those impatient people irritated by the slow shopper at the till in front of me (what, you too?). Now I am that faffer. Fastening my helmet, zipping my jacket, clipping my feet into the pedals all take a long time. Once I have got going, I must think ahead for the next junction or stop. Signalling with my hands is not going to happen – I also need electric gearing and hydraulic brakes to keep this show on the road rather than in a ditch.
Anyone who rides a bike knows that spatial awareness and cognition are essential if the 15kg of metal you are mounted on are not to make an ill-advised union with 1500kg of motor vehicle. It takes me an immense amount of mental and physical effort to stay switched on. Which brings me to my next challenge.
Cycling has long had a drugs problem, so I feel I’m in good company – I have to take my meds at least every four hours. On a long ride I can burn through them way quicker than that. In the PD community this is called being on or off and trust me, when the off button is flicked, it can be sudden and alarming. Once I am off, my movement can slow or my tremor might increase. Fatigue kicks in and dystonia (muscle contractions) leads to way more pain than a sore backside. If I’m not shaking, I can be quite literally the polar opposite, frozen stiff. Fortunately, I’m lucky, I have a wire deep inside my head, a power pack embedded in my chest and hand held control to manage the worst of this. I also have my tongue embedded firmly in my cheek. More seriously, this gadget and electrode is called Deep Brain Stimulation (DBS) and has been a game changer in controlling my symptoms. So, the next time you say you need something like a hole in the head, you won’t mind if I beg to differ.
3. Compassion not condescension
I don’t want to patronise you - that means to talk down to you, btw - but if you could check on me, I would really appreciate it. Note, you won’t be able to tell how I am, what with that mask thing I’ve got going on. Generally, I’m often more frustrated than incapacitated, but come to think about it, I can be both, simultaneously. So, empathy and understanding are a good thing. For example, popping those meds from blister packs is huge test of my diminishing dexterity.
Mechanicals, punctures and the like are never fun for any cyclist. Serious question, why does that cartoon rain cloud suddenly appear when you get a flat? Anyway, if you would like to step in it will be so much quicker and inside, I am still that impatient person in the queue.
When cyclists get tired they talk about pedalling squares, but for me that can just be the way I roll, or quadrangle. It’s not just that my right and left hand grips are unequal, my cadence is the same. Plus, when I get tired with Parkinson’s fatigue and my meds wear off this becomes more extreme. My stronger right leg might well behave, spinning like a hamster on a wheel. The left, not so much, proper right angles. Watching this back on video is something to behold and would doubtless cause a chiropractor to have a seizure or consider the opportunity to make a down payment on a place in the sun.
I have quite literally fallen asleep on the bike, which as well as being a huge worry, is incredibly annoying. You see, insomnia is another PD symptom. I can go three nights with no sleep at all or just get by with a few hours. So, if you could just keep an eye out to check my lights are not out that would be most helpful.
Where next, James?
It’s all about you. The ride, the congress, my life. The road can hard, but I accept that it is because of you that we are on this adventure and quest for knowledge. It is because of you I am part of a resilient community who embrace life and opportunities, despite the damage you wreak.
In Barcelona, I’ll meet the folk who journey with you. People who fight daily battles with depression, anxiety and plain apathy. Yet, because of you, they appreciate that life is short, to be lived now. Most of all, by sharing our experiences, it will help us to understand where we go next on our odyssey.
Declan O'Brien (UK) biking team.
For more information about Bike to Barcelona check our page.
Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions or positions of the World Parkinson Coalition®