The Peculiarities of Pedalling with Parkinson’s

When I learned that exercise is the only thing that has been shown to slow the progression of Parkinson’s, I started cycling, overcoming the numerous obstacles that Parkinson’s puts in my way.

Amongst many other symptoms, Parkinson’s affects my balance and coordination, causes dizziness, muscle cramps, dystonia, rigidity, stiffness, pain, slow movement, tremor, fatigue, poor posture and slowed reaction times. It affects my right side more than my left. The presence or absence of each of these symptoms, their severity and their duration are completely unpredictable.

Parkinson’s also affects my concentration, my memory and my ability to multi task. Those who cycle with me know never to rely on me for directions! On our LEJOG adventure, I once cycled eight miles around Tiverton, looking for a way out!

Exactly five years since my diagnosis, I am tackling an enormous physical challenge. To cycle 137km whilst climbing 3,700m of hills in one day. I have trained for this for nine months, in all weather.

This year alone, to prepare, I have cycled an average of 175km each week, spending 222 hours in the saddle and cycling up hills equivalent to five times the height of Everest.

I know from using a Wattbike, that 65% of my power output is generated by my left leg and 35% by my right leg. My posture is asymmetrical and this causes back, shoulder and neck pain. For long days in the saddle, I am making constant adjustments to try to correct these. I am bloody proud of my left leg for getting me up some impressively steep hills!

Parkinson’s causes problems with fine motor skills, so I have difficulty doing things like attaching my lights and Garmin to my bike. By the time I’ve pumped up the tyres (which can take several attempts), zipped up my jacket, fastened my shoes and helmet and put on my gloves, I’ve already overcome a number of challenges. However, as long as I am organised and leave myself enough time, I can be ready to set off with everyone else.

Image Source: Clipartart.com

Recently, my balance has worsened. Pushing off on my bike requires my concentration or I’ll be on the ground before I even get started. I need to concentrate on my balance and I sometimes find it harder when someone is cycling close beside me. If I drop behind my fellow cyclists, or ask them to give me some more space, it’s because I’m concentrating on staying upright, not because I don’t want to talk!

There is an etiquette to cycling in a group and each position in the group carries with it, specific responsibilities. This is important for safety of each group member but it is something that I cannot always be relied upon to comply with.

For example, a ‘turning right’ hand signal poses no problem for me. Try a ‘turning left’ hand signal and as soon I take my left hand off my handlebars, I can no longer control my bike! The cyclist behind me has to remember that a wobble usually indicates an imminent left turn!

Signalling to those behind me to warn them of potholes, obstacles or other dangers in the road is an important element of safe group cycling. However, my reaction time is slower than most. Those who cycle with me regularly know that by the time I’ve seen a pothole, taken action to avoid it, taken my hand off the handlebars, signalled and shouted to cyclists behind me, then it’s too late….I’m in the pothole! They know not to rely on me for such signals.

Image Source: Bikeyface.com

The timing and doses of my medication have become really important. I take more medication when I’m planning a long, hilly cycle. However, what I eat, when I eat, how I’ve slept and a number of other factors all influence how well my medication works. It is an art and not a science and it doesn’t always work as I have planned!

If my medication wears off, my speed, dexterity and even my thinking, reaction time, posture and balance can all be affected. Everything becomes harder, it’s like I’m cycling against the wind or wading through treacle. The tiniest incline feels like a mountain as my legs lose power and my mind becomes slow. I can’t remember which gear lever moves my gears up or down. I have to focus extremely hard to stay upright and brake effectively as my hands shake and dystonia causes my right hand to twist and move involuntarily. A rest, medication and jelly babies usually work after a short time but obviously I aim not to ever get in this state.

So, with my new bike, electronic gear shifters, meticulous timing of my medication regime and lots of practice, I cycle well. In fact I’m fitter and faster than I’ve ever been.

I am joined by a team of fabulous people, all of whom have trained hard and who will find this challenge one of the toughest they have undertaken. We will all push ourselves to the limit of our physical capabilities and the challenge will no doubt test our psychology too as we dig deep to continue to climb those hills long after each and every fibre in our our bodies has yelled ‘stop’.

Is it worth the effort, I have been asked? Absolutely! Cycling is good for my body and my mind. It helps me stay strong mentally and physically. I love being outdoors, the weather has been fantastic and our countryside beautiful. I love a challenge and I’m blessed with lots of friends who will cycle with me despite my poor group skills! I’m also blessed by the support of family and friends who don’t cycle but put up with my endless tales. Apologies to them, I have no intention of stopping cycling any time soon!

No Plan!

(Just Realised I Hadn’t Posted Sunday’s Adventures!)

Our plan today was to have no plan today. To keep things flexible, have a range of options and see how we felt as the day progressed.

Ewan has the same stomach upset that John had, so couldn’t cycle this morning. Miraculously, he joined us mid afternoon, feeling a little better but I suspect feeling mostly like he didn’t want to miss a whole day of cycling.

Some great roads, a reasonable pace, some time with the rest of the team before they set off for home, lunch by the sea (for some of us), 80km covered, 1200m climb and back before our bike hire expired.

Perfect Day! who needs a plan?

Guest Blog

TRAINING & TEAM-BUILDING by Ewan MacLean

The Cyclopaths have all been training in our own way: individually, in pairs and in a variety of groups. We are only one small part of a much bigger ‘Raid Alpine’ group who have all been doing the same across many different UK geographic locations. Between us, we have been cycling indoors and out, through some of the worst conditions a British winter can throw at us, as well as undertaking a huge variety of other types of exercise to support our training. Each week, we cover very different distances, do different types of exercise with different frequencies and speeds, tailored to our individual fitness needs.

Most of us know some of the group members, and indeed a number of the group did a similar challenge last year, The Raid Pyrenees, but many of us have never met each other. However, this week, some of us are getting together, many of us meeting for the first time, in a very different location with a very different climate and some very significant hills to climb. It will be the first big step towards us all becoming a ‘team’ this summer with one common goal: to raise funds for The Cure Parkinson’s Trust.

We will of course let you know how it goes………

Wading Through Treacle

Keen to have one more training ride before heading off to the sun for our 5 day training camp, I set off for a hilly few miles.

Cycling with Roland who thankfully was happy to take an easy pace, we set off up Harp, Ham and Castle Hills.

It could never be considered an easy route but today it felt exceptionally hard.

I can only describe it as being like wading through treacle, mentally and physically. My balance was poor, as was my posture. Braking and changing gears were a slow process as if my brain and my body were no longer communicating to each other. My power output was low and my right leg had a mind of it’s own and bumped against my bike frame with every pedal stroke. It moved of its own free will, regularly and involuntarily clipping out of the pedal.

My thinking was slow and I had to work out what to do each time I wanted to change gear. Something any cyclist will know is usually an instinctive response. I was uncoordinated and clumsy. I couldn’t get my meds out of my back pocket or zip up my jacket.

It feels very personal to share with you this failure of my brain and body to work together but I am learning what living with Parkinson’s is like and it’s not how I expected it to be. Many people ask, so it’s an attempt to explain rather than complain. It is what it is.

We all have good days and bad days. I prefer to think of them as productive and less productive days. Much more positive to have had a less productive day than a bad day!

‘If you’re on the outside looking in, it’s hard to understand and from the inside looking out it’s hard to explain’

One of Those Days

Cold, wet, windy, hailstones, headache, hangover, tired, torturously slow…….

On reflection I was wise to go out alone, I wouldn’t have kept up with the Sunday morning group today. Today’s effort is definitely not one to dwell on, so, I got to thinking……

So far this year, I have cycled 1060km, burning approximately 34,000 calories. It sounds like a lot but as I haven’t shed a single pound in weight since Christmas, I started to wonder what 34,000 of my favourite foods might look like!

150 Mars Bars, 56 Bottles of wine, 1554 jelly babies, 455 Lindt chocolate balls or 113 Slices of cake!

I suspect it was the regular cake stops and the emergency jelly babies!

I could have done other activities to burn the same calories:

596 hours talking, 59 hours in the gym, 53 hours boxing, 60 hours dancing, 81,000 hours sleeping, 167 hours walking, 130 hours walking and talking!

But none as fun as cycling…….

I clearly need to exercise more and eat less to get ready for The Alps, 119 days to go and counting and every one of these days will count.

From the Heart

Yesterday, I received a message from Ewan who is training hard for the Raid Alpine challenge. Despite being hundreds of miles from the other Cyclopaths and therefore having to do much of his training alone and with the added challenge of the harsh winter weather on the east coast of Scotland, his enthusiasm and enjoyment of cycling warmed my heart.

From Ewan:

I’m trying to remember but I think 🤔 today was only my 5th or 6th ever ride over 50 miles (just slightly over 50 I hear you say!! 🙈😉😆) and definitely my first 💯 + miles week!! 👍🏻🎉 This cycling lark is definitely getting obsessive! 🤓


To be honest, I think it’s also very good mentally; it slows me down from the daily dashing around running the business; gives me space to think about all sort of random yet important stuff that I might not otherwise have allowed time for; gives me space and pace to enjoy the local environs; makes me appreciate how lucky I am to be where I am in life; and the feeling of ‘satisfaction’ tiredness at the end certainly enhances that overall feeling of positive well being.


Thank you again for getting me involved, I’m sooooo enjoying the journey 👍🏻😊🚴🏻‍♀🚴🏻‍♂🚴🏻‍♂🚴🏻‍♂

Thank you, Ewan, we are sooooooo enjoying having you in the team

I loved your message, and am delighted that you too have discovered the many joys of cycling.

We’ve got Wind!

According to the Met Office, the following descriptions of wind apply. The Met Office does’t mention cycling in these winds, so for the cyclists amongst you, here are a few extra pieces of information.

Light Air (1-5km/hr)

Not a problem for cyclists. We generate more air by talking on the flat and deep breathing when going up those hills.

Light Wind (6-11km/hr)

Refreshing, keeps us cyclists cool and fresh.

Gentle Breeze (12-19km/hr)

Cyclists may not describe this as ‘gentle’ when meeting it head on but we are unlikely to be blown off our bikes by it.

Fresh Wind (29-38km/hr)

‘Fresh’ conjures up nice images, such as ‘fresh as a daisy’, ‘freshly laundered clothes’. The word ‘fresh’ did not enter my mind once when battling up and down hills just to stay upright in a ‘fresh wind’! The words ‘frightening’, ‘ferocious’ and ‘fearsome’ seem more appropriate and I’m sure the ‘f’ word escaped under my breath a few times during Saturday’s cycle, battling a ‘fresh’ wind. High risk of getting blown into ditches, other cyclists or cars. Remind me never to venture out in a ‘fresh’ wind ever again!

The Met Office descriptions go on: Strong Wind (38-49km/hr) etc…… but I read no further. For me, cycling stops at anything more than a gentle breeze by Met Office standards!

Image Source: Winnie the Pooh

A Second Wind!

Rarely have I ever cycled and not enjoyed it. Yesterday, however, was one such occasion. Despite a beautiful, hilly and carefully planned route during which we thoroughly enjoyed the first 40km, the homeward bound route was tough. After the trauma of cycling in winds strong enough to knock me over, we eventually made it home safe but exhausted. Desperately keen to replace these negative feelings about cycling, with my usual positive ones, I ventured out again today.

The wind had dropped from fresh (not recommended) to moderate (hard work but without the threat of being toppled over).

What a beautiful ride. A gentle 50km in spring-like temperatures. No hills, windy enough to be a little harder work than usual but an easy pace. One puncture, easily repaired. Made even easier when we stopped to change the tyre outside the house of a cyclist, whose track pump saved time and effort pumping up the replacement tyre. Thanks Rob!

Still feeling a little competitive, here’s the good news for this week:

Distance

Elevation

Despite the colds weather in Scotland and a weekend away from home, Ewan managed a very respectable 6th place.

The Cyclopaths!