ABC

Having recovered from the Raid Local challenge, spent some time with my family, caught up with some of the things I had neglected whilst training and taken some time to reflect, it’s time to put pen to paper and, of course, it’s time to get back in the saddle again.

But first, once again, a very huge, very heartfelt ‘thank you’ to everyone who supported me in doing the Raid Alpine challenge. So many of my family and friends (and sometimes, complete strangers) have supported me in so many ways. There are so many of you I could name but I fear I might miss someone out if I attempt to do this, so I will keep it simple.

Thank you, each and every one of you. I have been touched by your kindness, your friendship, your generousity, your encouragement and of course your tolerance of all things cycling!

ABC – Ambassador / Blogger / Cyclist

Image Source: Zenefits

I started cycling not long after a diagnosis of Young Onset Parkinson’s in 2015 and since then cycling has become a way of life, of being active, keeping fit, pushing myself physically, having fun and having something positive to focus on. Blogging about my cycle challenges has added to the fun and has become a memoir of some extraordinary adventures with some extraordinary people. Memories that I will treasure forever and of course, there are plans for future challenges.

When I’m not cycling, I’m spending some time in my role as an Ambassador for the next World Parkinson’s Congress being held in Barcelona in 2022. It’s an incredible privilege to be given the opportunity to work alongside 14 other Ambassadors from across the world over the next two years. When I look at the names of others who have held this role in the past, I recognise people who’s stories I read when I was first diagnosed. By sharing their experiences of living with Parkinson’s, they helped me understand what my future may look like. They gave me hope and they inspired me.

I have since met many of these people, indeed, some are friends and they continue to inspire me and thousands of others in the Parkinson’s community. This role is important to me, I want to do it well. It is an opportunity to be an advocate for this wonderful community and to make a difference. It is a challenge, an adventure, a way of meeting new people, an opportunity to do something extraordinary….

A bit like cycling then! And just like cycling, I intend to use this blog to record some of this journey too.

A Team Effort

Doing the Raid Local challenge would never have been possible without the support of so many people, so I’d like to say ‘thank you’ to everyone who trained with me, encouraged me, supported me for months while I prepared for the challenge, supported me on the day, donated to The Cure Parkinson’s Trust and to family and friends who listen to me talk endlessly about cycling! More about you wonderful people later…..I could never have done this without you.

Not So Easy!

The challenge, in reality, was not nearly as easy as I had dreamt it might be! (See Previous Blog) In reality, it took me a lot longer, it was a lot harder, my average power output was a lot lower and I didn’t see Rowan Atkinson at all!

My stats came in four parts:

  1. Until my Mio Battery Ran Out
  2. Until my Phone Battery Ran Out
  3. Until my Battery Ran Out
  4. The Final Push

Part 1

Nine times up and down Cleeve Hill from alternate sides, once up Castle Street (a killer!), three times up Stanway Hill and back to Cleeve Hill for a few more ascents. My Mio battery ran out after another three ascents of Cleeve Hill………

Part 2

Another twice up Cleeve Hill and my phone battery ran out……..

Part 3

Another 4.82km, light (and legs) fading, with winds of 34.5km/h, my battery finally ran out!

Part 4

The following morning, 553m short of the required ascent, with my legs screaming ‘No!’ and wind speeds of 36km/hr, with John’s support, I climbed Cleeve, Harp and Ham Hills to reach a total of 3,715m of climb. Mission accomplished!

In Total

168km cycled, 3,715m climbed, over 11 hours of cycling plus over 4 hours of stops for refreshments, refuelling, photos, chat, rest, recovery, shelter from rain, junctions, etc………

More detail to follow when I can muster the energy…………..

Easy!

Having lived cycling, talked cycling, blogged cycling, thought about nothing but cycling for the past few months, I have now started dreaming cycling.

If I believed my dreams, I would be cycling ahead of the rest of the team, they would be shouting ‘Slow down! We can’t keep up! When did you get so good on hills?’ But I wouldn’t be able to hear them, I would be so far ahead. The team would consist of the Cyclopaths, friends, Sir Chris Hoy, Mike Tindall and Rowan Atkinson! None of whom were able to keep up with me, except Rowan, who overtook me heading clockwise on the M25. However, for his efforts he was disqualified as clearly cyclists are not allowed to use the fast lane!

Image Source: Into film.org

I haven’t slept well for five years. Initially after diagnosis, from the shock and fear, and it was only once I’d got to grips with that, that I realised Parkinson’s itself causes sleep problems. Another symptom that is hidden from the view of others. My nights are spent tossing and turning, writing, emailing, thinking and when all else fails, occasionally I get some sleep. Never more than three solid hours.

So imagine my delight when last night, during those three hours, I cycled 137km, climbed 3,700m of hills faster than the speed of light and the only person to overtake me was Rowan Atkinson!

To cap it all, I was awarded an Olympic Gold Medal made of chocolate for my efforts. With energy to spare, I cycled an ascent of Mont Ventoux to celebrate. This ‘lap of honour’ was easy, my thighs had grown to resemble Sir Chris Hoy’s and my power output was averaging 24,000 watts. I was delighted by my performance but slightly worried I would never fit into my jeans again. The long downhill from the top of Mont Ventoux was easy, like the car in Chitty Chitty Bang Bang, my bike grew wings and like a bird I flew gracefully down from the top. Anyone who has ever cycled with me knows for certain that I am never at the front and there is nothing graceful about my downhill cycling, so this was a thrilling finale for me!

Image Source: cool-party-favours.com

I felt a fleeting euphoria on waking, that the challenge was over, I had completed it without any problem, I was faster than Sir Chris Hoy and really, I didn’t know what all the fuss was about.

Imagine my dismay when it dawned on me that Sir Chris Hoy is not cycling the Gloucestershire hills for Raid Local (although Mike Tindall is and I believe Sir Chris is leading a section of the Raid Local challenge on Zwift), I haven’t yet completed the challenge, it will take me significantly longer than three hours and if I can’t fit in my jeans it’s due to the chocolate not the training!

Roll on Sunday 28th – Raid Local.

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!

Fourth ‘First’

My fourth ‘first’ for this week was to cycle Sudeley Hill today without stopping. As part of a hilly ride today, after Harp and Ham hills, I finally did it!

At 2.5km long, with an average gradient of 8.4%, a maximum gradient of 18% and a total climb of 215m, it was a tough one.

Despite trying a lighter, more aerodynamic bike, an additional ‘granny gear’, electronic Di2 gear shifters, a lighter me, all the cycling gear, months of practice, until today, I just couldn’t quite do it. What was different today? The promise of bacon baps at The Old Post Office in Guiting Power was perhaps was gave me that final push I needed to get up that hill!

A very welcome rest and refuelling stop!

Three times more and I’ll have completed The Raid Local……

Wild, Wet, Windy and Wintery

With a dislike for indoor training, despite the threat of rain and a moderate breeze, the great outdoors won my vote.

The weather forecast wasn’t great but it painted a more optimistic picture than was the reality!

Heavy rain, strong winds, debris on the roads, flooded roads, fields, cars……

Emergency tree felling to avert an accident….

And to top it all our planned stop at the fabulous Miserden Garden Centre Cafe (home to some amazing cakes) was shut.

Thankfully, The Carpenter’s Arms at Miserden had a warm welcome with it’s roaring log fires.

Despite the weather and the sense that we weren’t breaking any records today, I was thrilled to get a few Strava ‘Personal Bests’ which almost made it all worthwhile!

Guest Blog

What cycling has taught me about Parkinson’s Disease

By Paul Jones

Thanks very much to Alison, PD fundraiser and networker extraordinaire for letting me guest on her blog.

Cycling has always meant freedom to me. As a child growing up in 1970s Hemel Hempstead, cycling set me free to explore the world beyond home and family, into the beech woods and chalky slopes of the Chilterns. Freedom and self-reliance go hand in hand and, although I didn’t know it at the time, I realised that all it took to get me somewhere was a bit of effort and some food in my belly – engine and fuel supply combined. It was all down to me…I could just go…and so I went.

Through the 1980s cycling took me further and further out into the world, the freedom and self-reliance combination taking me and my mates on ever more ambitious rides. To Dorset, to Switzerland (yes, from Hemel Hempstead), to the French alps, Communist-era Hungary and university in Aberystwyth, west Wales.

The 1990s opened with a hair-raising introduction to biking through central London’s major junctions from my cycling girlfriend (and future wife) Sophie. Kids followed, strapped into seats on the back of our bikes for further two-wheeled adventures in France and Suffolk, where we made our home.

So what has this got to do with Parkinson’s disease?

Well, I’ve found the sense of freedom and self-reliance cycling has given me is helping me face Parkinson’s. I still cycle frequently and though the distances are smaller and the gradients kinder, it remains a liberation and reminds me that though I can’t alter the reality of PD, I remain free to choose how I react to it. Self-reliance has made me take ownership of my situation, educating myself, talking with other Parkies, and doing all I can to keep the thing at bay. I’m still seeing the world on a bicycle; 2019 saw me ride to Amsterdam and, with Alison, around Kyoto during last year’s World Parkinson’s Congress.

I’m not planning to stop any time soon.

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!

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

Over the Hill

Cleeve hill boasts to be the highest point in Gloucestershire, indeed the highest of the Cotswold Hills. I was disappointed to learn after making the claim on several occasions, that from the highest point by road, there are a few hundred additional metres to climb to reach the actual highest point! Not manageable by road bike but not to be deterred, a wild and windy walk with a friend and our dogs, got me to the highest point in Gloucestershire this week!

Cleeve Hill has become my training ground for solo cycles. For the first time today, I cycled up over down the other side to Winchcome and turned round and did the reverse. My stats will provide the basis for assessing improvements in speed training both uphill and downhill – sincerely hoping that there are some in the next few months!

Not the Highest Point in Gloucestershire!

Source: Goggle Maps

The Highest Point in Gloucestershire!

Source: Trigpointing.uk

First Ride of 2020

With no offers of company for today’s cycle, I set off alone and tackle Cleeve Hill for my first ride of 2020. It is unusual for me to cycle so far alone, there is usually someone willing to cycle. It’s a very different experience, cycling alone but I enjoyed the challenge. No personal bests today on the hill but I am consistently faster than six months ago at both the uphill and the downhill. I also managed to get to Winchcombe from the top of Cleeve Hill without braking which is quite an achievement for me!

Having been overtaken by three cyclists near Staverton, I used them as pacesetters and gave chase for three miles – achieving three ‘personal bests’, according to Strava, during that burst of activity! Overall I am happy with my distance and pace this morning.

I find it much less fun cycling alone. There is no pressure but equally, there is no pacesetter and I could quite happy cycle along at a comfortable pace improving neither my stamina nor speed! I enjoyed the cycle. No coffee stop today and no conversation but beautiful scenery, quiet roads, mild temperatures, dry and so I could think of nothing better than being in the great outdoors!

2019 Statistics

The last ride of 2019 made me reflect on the cycling I have done during the year, before turning my attention to the challenges that lie ahead in 2020.

My Strava Statistics for 2019

The Strava statistics tell only the numbers, so here’s a little personal reflection on the experiences.

I cycled nearly 4,000km, predominantly throughout the beautiful, hilly, Cotswold countryside. Ventures further afield included a challenging but fun weekend cycling in the Brecon Beacons and later in the year, a week long cycle from Boston to Bar Harbour on the east coast of the USA.

Both, the Brecon Beacons and Boston to Bar Harbour proved to be hillier than almost anything we had experienced nearer to home and both proved to be a physical challenge as well as great fun. For Boston, the LEJOG Cyclopaths: Caroline, Paul, Paula, Julia, Marianne, Steve, John, David and myself were joined by friends from the USA and Canada.

For the Brecon Beacons, The Cyclopaths were joined by numerous friends and we had a wonderful weekend with long, challenging cycles along beautiful routes meticulously planned by Linda. As always, the company was fantastic and we enjoyed great food and wonderful hospitality at the lovely Foyles of Glasbury hotel.

I also enjoyed cycling Central Park in New York with friends, during one of my 50th birthday celebrations.

I loved cycling around Kyoto and Gion in Japan with Paul, where we both attended The World Parkinson’s Congress.

The rest of the miles were shared with many wonderful ‘Cyclopath’ friends and latterly with our friends, the Sunday morning cyclists who have welcomed us with open arms as we ramp up our Raid Alpine training. Thank you for letting us infiltrate your group – we thoroughly enjoy our Sunday morning cycles with you all.

Thank you to everyone who has shared some cycling miles with me over the past year. I have loved every minute of your company, your enthusiasm, your support and fantastic camaraderie. I couldn’t have done any of this without you all. I look forward to many more adventures during 2020.

Last Ride of 2019

No longer able to use Christmas as an excuse to put off training for The Raid Alpine challenge, I head out for my last ride of 2019 and a gentle re-introduction to my training following the festive period. It was cold but dry and great to have some new cycling companions (James and Jess) as well as Roland, for the morning ride.

Our brief was 20-30km, with a coffee stop around 2/3 of the way round. Never one to be constrained by a brief, we actually cycled 50km, with a coffee stop at 32km!

Despite the initial cold temperatures and a longer than anticipated cycle to our stopping point, after warming hands and feet by the fire at the Royal Oak in Gretton, by the time we were returning home, the sun was out and we were pleasantly warmed by it. A climb over Cleeve Hill helped keep us warm too. A great last ride of 2019, thank you everyone.