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!

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 πŸ€” today was only my 5th or 6th ever ride over 50 miles (just slightly over 50 I hear you say!! πŸ™ˆπŸ˜‰πŸ˜†) and definitely my first πŸ’― + miles week!! πŸ‘πŸ»πŸŽ‰ This cycling lark is definitely getting obsessive! πŸ€“


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 β€˜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 πŸ‘πŸ»πŸ˜ŠπŸš΄πŸ»β€β™€πŸš΄πŸ»β€β™‚πŸš΄πŸ»β€β™‚πŸš΄πŸ»β€β™‚

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.

Saturday’s ‘Sunday’ Cycle

We did our usual Sunday morning cycle on Saturday as the weather forecast was much more favourable!

The Cyclists

Jackie, Caroline, Al, Nigel, Roland & John

Highlights

Good company and the essential cake and coffee stop

Beautiful countryside

Amazing Wildlife

We spent a few minutes watching Fallow Deer running across fields and at one point, across the road ahead. There must have been 30 of them and it was such a beautiful sight.

Lowlights

The condition of the roads.

The winter roads can be treacherous. Although not icy today, it was slippy in places. I managed by some miracle to land safely and upright in a hedge after sliding uncontrollably and scarily downhill.

Fog

Visibility was really poor at times. Cycling at the rear, it was interesting to observe the visibility of the rest of the group when it became foggy. Hi vis clothing helps but bright, flashing, rear lights make the biggest difference. Many new lights purchased after today’s ride.

New Skills Needed

A problem with her chain within the first five minutes, meant that Jackie couldn’t carry on. No amount of medical, dental or veterinary expertise amongst the group, could fix the problem! A bike maintenance course for at least some of us looms ahead…..

Summary

Distance: 73km

Elevation Gain: 983m

Maximum Speed: 118km/hr. I can only assume it’s an error!

Enjoyment: undefined

Jolly Nice

A clear day when we left Cheltenham, by the time, we had cycled up Leckhampton Hill and out towards Winstone, the fog was setting in.

It was lovely to meet up with John and Chris, two friends who we had cycled LEJOG with.

LEJOG With Chris and John

Under time pressure to get back, Roland headed home, while the rest of us enjoyed a coffee and cake stop at one of our favourite haunts – The Jolly Nice at Frampton Mansell.

I’ve cycled to and from The Jolly Nice a number of times and was pleasantly surprised to find the ride home easier than before. Easier, except for the shortcut to avoid the notoriously busy Air Balloon roundabout on the A417. By this point, we had all gone our separate ways, so, on my own, I took a familiar off road shortcut, only to be met by a dozen very large cows grazing alongside the route I needed to take. I fleetingly considered returning to the A417 as the safer option!

My imagination running riot, I couldn’t help feeling my high visibility red cycling jacket might not have been the best choice for this part of the journey, and with more than a little trepidation, I took the shortcut and (of course) made it through unscathed.

Another 55km of training enjoyed!

In case anyone has noticed the absence of my husband in training of late, he’s doing his training in the Alps!

NAD

In the medical world, amongst other things, NAD, means ‘Nothing Abnormal Detected’.

‘NAD’ sums today up Beautifully:

It was cold, wintery, foggy and wet out. NAD for January.

Despite the weather, we cycled. NAD for The Cyclopaths.

We cycled Ham Hill again. NAD, having cycled it three times this week already.

We cycled 40km. NAD, 40km is fairly standard these days.

We enjoyed it. NAD, except perhaps, a slight madness!

We had a brief coffee and cake stop. NAD, coffee and cake is a core component of our cycle rides.

The owner of the coffee shop recognised us. NAD, we frequent the same dozen coffee shops regularly.

We agreed to do it all over again on Friday. NAD, this is the way it will be until June 29th………

Too Icy (For Some but Not All of Us)

Freezing over night but the sun shone brightly this morning, so I wrapped up warm in my cycling gear with high hopes. A few steps out onto the road and it was clearly still very icy. Despite my desire to cycle, my desire not to injure myself was stronger.

Today’s Results

Miles Cycled – Nil

Metres Climbed – Nil

Limbs Intact – All

Desire to use indoor turbo trainer – Nil

Fingers crossed tomorrow is warmer……….

Made of Stronger Stuff

Ewan, living on the East coast of Scotland, is made of strong stuff, where inclement weather is concerned. Braving the freezing temperatures, the wind and the rain, he had his coldest cycle so far……….and is still smiling!

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!

The evidence that cycling is beneficial for people with Parkinson’s is well established. Recent research is described in Dr Simon Stott’s ‘Science of Parkinson’s’ article The Exergaming of Parkinson’s.

Image Source: Stuartmcmillen.com

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.
Image Source: Clipartart.com

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.

Image Source: Bikeyface.com

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.