Pedalling with Parkinson’s

Parkinson’s is a progressive, degenerative disease for which there is currently no cure. Symptoms will get worse over time and the rate of progression will vary significantly from person to person.

Amongst many other symptoms, Parkinson’s affects balance and coordination, it causes dizziness, muscle cramps, dystonia, rigidity, stiffness, pain, slow movement, tremor, problems with sleep, fatigue and posture. Symptoms I am all too familiar with. Add to this, slowed reaction times, a 50% lower power output on my right side compared to my left and an asymmetrical riding posture and I might be forgiven for thinking that cycling and Parkinson’s are not particularly compatible!

BUT – exercise has been shown to slow down disease progression and for me that’s pretty compelling motivation for me to get on my bike and ride!

By the time I tackle The Raid Alpine Challenge, I will have been diagnosed with Parkinson’s for over 5 years. During this time I have cycled 1,000s of kilometres and become the fittest I have ever been. I cycle faster, further and hillier than I have ever done and am better than I ever imagined I might be at this stage of my Parkinson’s progression.

Others may have a different experience but for me, the Parkinson’s related challenges start when I’m preparing to go out on my bike – fiddly tasks such as attaching lights, my Garmin, saddlebag, doing up zips, helmet, shoes, and putting on gloves take longer than they used to and can be frustratingly difficult at times. Checking tyre pressure is a hit and miss exercise. On a good day, it’s OK, on a not so good day by the time I’ve attached the pump to the valve, I have no pressure left in the tyres at all. So, I pump the tyre up, only to lose all the air when trying to disconnect the pump! And repeat……

There is an etiquette to group cycling. Read Road Cycling UK’s Essential Guide to Hand Signals and Calls to learn more about this. Parkinson’s makes me a less reliable group cyclist than I would like to be. There are a few reasons for this:

1. Take my left hand off my handlebars and my right alone cannot control my bike. Signals involving my left hand are unlikely to give the desired outcome.

2. Parkinson’s makes it difficult to project my voice so my shouts are not always as loud as I would want them to be. Those behind or in-front may not always hear my warning shouts.

3. My balance is worse when I have a lot of moving things in my peripheral vision. If I don’t talk, or if I drop behind you, or ask you to give me some more space, it’s because I’m concentrating on staying upright, not because you’ve bored me!

4. My reaction time is slower than most. I’m likely to be in the pothole by the time I’ve seen it, let alone, seen it, avoided it, taken my hand off the handlebars and signalled and shouted to cyclists behind me.

I shall alert everyone to the risks of cycling behind me at the team safety briefing. Fortunately, cycling behind me is not something many of the group will experience as I’m one of the slower cyclists.

5. I adjust the timing, quantity and combination of my medications for long rides. So, I like to know how far we are likely to go, how fast and how hilly, when we plan to set off and when we are planning to take a break. Inevitably things change and I can adapt to this but I like to have a plan!

If I get the timing and dosage wrong, my speed, dexterity and even my thinking, reaction time, posture and balance can all be affected. Everything becomes a slog, like wading through treacle. The tiniest incline feels like a mountain as my legs lose power and my thinking becomes slow. I struggle to remember which gear lever moves my gears up or down, and it becomes difficult to remember my left from my right and I even have to think about how to brake. On top of all of this, I could quite literally fall asleep whilst cycling and can struggle to even keep my eyes open.

If this happens during The Raid Alpine challenge, where I need to cycle 800km, whilst climbing 19,000m over 6 days, I have a problem. As one of the slower cyclists, I am already worried there may not be enough hours in the day, even on a good day, for me to complete the distance and climb. Throw in a bad day and I may need a few extra days to complete the challenge!

6. My symptoms vary day to day. The only predictable thing is knowing I will have some combination of some of the symptoms for some or all of a ride. Symptoms can be influenced by the time of day, how well I’ve slept, stress levels, fatigue, what and when I’ve eaten, time of the month, illnesses (cold, flu etc), the weather….

In a nutshell, like everyone, I have good days and bad days, they may be a little more variable and more unpredictable than most but I have had a few years of experience in dealing with these and I believe, I have it down to a pretty fine art. Time will tell.