Challenging Times

My turn around time to respond to a text message, WhatsApp, voicemail or email, averages about six hours and has been known to stretch to 48 hours at times. I’ve not suddenly become antisocial, uncaring or any less interested in your messages but these days, I need to put some dedicated time aside to respond to them.

There was a time when I could be making an appointment by phone and sending a text message whilst simultaneously smiling at the checkout operator and loading my shopping onto the conveyor belt. Admittedly, I wasn’t giving each task the attention it deserved but on the whole I managed successfully to multi task. I would also remember what appointment I had booked, the time, the date and the location and accurately add this information to my diary as I left the supermarket.

Not any more! Now, if I want to arrange an appointment by phone, I have to be somewhere quiet, no distractions, earphones in and pen and paper at the ready. The earphones are necessary as I can’t hold my phone to my ear for any length of time without dropping it. The pen and paper are necessary as I will immediately forget the time and date of the appointment if I don’t write it down. I use the term ‘write’ in the loosest possible way. My loss of ability to write legibly was one of the very first symptoms which prompted me to seek a medical opinion. I now have typical Parkinson’s small, untidy, often illegible handwriting.

The realisation that I need to focus on one thing at a time dawned on me gradually after a series of missed appointments, forgotten dates with friends and turning up at the hairdressers only to realise that I should have been at the dentist! More embarrassingly, after signing ‘Love You Loads 😘❤️’ at the end of a text message to the window cleaner, when also responding to texts from my family, I realised I needed to pay more attention to the task in hand!

With no hope of me sending a quick response to a message whilst doing something else, I rarely check my phone when I’m out. It feels quite liberating! I ‘type’ with my left hand. For ‘type’ think slow, one finger, with frequent errors and corrections. I tend to respond to messages using my laptop, which I find easier, typically late at night when quiet descends.

So, dear friends, colleagues, acquaintances and loved ones….Please don’t take it personally if I don’t respond to your message in a timely manner. At risk of sounding like a recorded corporate message:

‘Your messages are important to me and I will respond as soon as I can give them the undivided attention they deserve.’

‘PS. Love You Loads😘❤️!’

And just as quickly as I found my mojo (see previous blog), I appear to have temporarily lost it again!

I was beginning to lose the motivation to exercise every day. Exercise was beginning to feel like a chore, a daily hurdle to be overcome as quickly as possible. I was beginning to prioritise other things over exercise and to make excuses to escape the exercise sessions that least enticed me.

Where exercise is concerned, I feel like I’m going head to head with Parkinson’s and I can’t let Parkinson’s win. Parkinson’s doesn’t stop, it doesn’t lose it’s motivation, it gradually but persistently continues its path of destruction. I know that exercise is the only thing shown to slow the progression of the disease down. However, I had mistakenly thought that this fact alone would motivate me enough to ensure that exercise is always top of my daily ‘to do’ list. Not as simple as this, it seems.

One of the symptoms of Parkinson’s is apathy. This is well recognised and well documented. Apathy is more than a lack of motivation, it is a loss of interest, an indifference, a loss of enthusiasm, a loss of emotion. Apathy can infiltrate every aspect of life. Perhaps I’m experiencing more than a loss of motivation, perhaps I am developing a Parkinson’s related apathy? It’s easy to blame Parkinsons’ for everything, so for some balance, I looked for other things to blame as well!

The dark nights drawing in, combined with the cold, wet and windy autumnal weather have undoubtedly lessened my appetite for exercising outdoors. I am not sure apathy or a lack of motivation can be blamed for my not wanting to venture out on my bike on a cold, dark, rainy evening, it’s simply that the lure of a cosy night in front of a warm fireplace wins every time!

Exercising indoors is not as appealing as it used to be either. Having been closed for many months, since reopening, my local gym has been underused, there’s no camaraderie and it lacks any kind of energy or atmosphere. It has developed an apathy of its own and is uninviting, unappealing and indifferent to my presence or absence.

Each of these factors undoubtedly contribute to my lack of motivation but it was only when speaking to a friend about an endurance challenge he was training for, that it dawned on me……I no longer had an exercise challenge to work towards and without a destination in sight, I was losing my way. For me, having a goal to work towards is a vital component that gives me the motivation, drive and commitment to exercise. I’m fortunate to have a group of like minded friends and so training for a challenge has always been sociable and fun as we encourage and support each other. Without a doubt, this is the single biggest factor that motivates me to exercise.

Despite this year’s mammoth cycle challenge being cancelled twice, it served to motivate me to cycle over 6,000km of hilly training this year, something I am very unlikely to have achieved otherwise. With this goal in front of me and with the company of friends, I had enthusiastically cycled each of these 6,000km and thoroughly enjoyed them as well.

Due to the restrictions and uncertainty related to the Coronovirus, we had delayed our plans to cycle from Seattle to San Fransisco next year until 2022 and so, I had no significant challenge in my diary for 2021.

Thankfully, this is one of the more easily remedied ‘excuses’. I have since signed up to take part in a Mont Ventoux cycling challenge in May 2021 in support of The Cure Parkinson’s Trust…………….and I immediately ventured out for a thoroughly enjoyable hilly 50km cycle! I just need to encourage a few friends to join me now…….

Exercise is never an option for someone living with Parkinson’s. It has been shown time and time again to ease a wide range of symptoms, improve mood and it is thought to slow progression of the disease down. It is the single biggest thing we can do to help ourselves. If a neurologist told me there was a pill which could do all of these things, then I’d do whatever it takes to get hold of this ‘wonder drug’.

Even with this knowledge, there are times when I might prefer to curl up on the sofa rather than get up and go. I rarely let my desire for the latter win but despite the rewards, it not always easy to maintain the motivation, day after day, month after month.

As well as developing a love of cycling, I’m lucky to have a large group of friends to cycle with. Exercising with others makes it fun, sociable and so much easier to do. Inevitably, I go further and faster when I’m out with others.

The same is true of the gym where I share a personal training session with a friend who also has Parkinson’s. Again this makes it more fun and we inevitably spend some time afterwards checking in with each other. Making that commitment to exercise with someone else means I’m much more likely to maintain that commitment to avoid letting anyone else down.

Sunday mornings have become a favourite fixture in my diary. Amongst our friends, there is a small, well established group who cycle every Sunday morning. When training for our Raid Alpine change we were invited to join them and since then, Sunday mornings have, whatever the weather, become physically challenging, socially rewarding and our knowledge of the best cake and coffee stops in Gloucestershire and beyond has become second to none.

Thank you to these wonderful friends for making it ‘Easy like Sunday Morning’.

Determined not to allow our hilly cycling to be thwarted by the cancellation of both our Alps challenge in June and our modified Alps challenge in August, we set off to conquer some UK based roads and hills instead.

This week was…

• Not quite the Alpine challenge in terms of people. From the original group of 46 – we are now five!
• Not quite the Alpine challenge in terms of the original 800km – we covered 400km.
• Not quite the Alpine challenge in terms of hills, originally 19,000m of climb, we covered 5,000m of climb and trust me, that was enough!
• Not quite the terrain our new aero road bikes were designed for!

The British late summertime brought heavy rain, flooded roads, a rare glimpse of sun and some strong winds. Add some interesting route planning, the rough off road terrain in some sections and getting lost and it’s safe to say, we still had a few challenging times!

Day 1 and Day 2 C2C

Travelling as a group of four for the first two days and taking it in turns to drive the camper van, we cycled our own route based loosely on the iconic Coast 2 Coast route. Amongst a number of hills, this saw us climb Whinlatter Pass and Hartside. Having cycled these two climbs twelve years ago, I was encouraged that they felt easier, faster and more fun than I remember them being. These climbs haven’t changed so despite getting older, I can only assume we have got fitter and faster.

Day 3

Meeting up with Ewan today, our first day cycling together was thwarted by torrential rain. Ewan and John managed an impressive 50km, I did a quick 12km and that was enough and the others, opted for the dry, warmth of our lovely, quirky accommodation at Bertie’s of Otterburn.

Day 4 Coast to Castles

Keen to cycle some of the beautifully scenic North East coast of England, we tackled some of the Coast to Castles route. An apparently stunning route, unfortunately, we had an overly ambitious distance to cover, we got lost, separated and found ourselves either alongside the A1, with no coast and no castles, or on a cliff edge track not compatible with anything other than the most robust mountain bike! Recurrent punctures on John W’s road bike were testament to the fact that these tracks were not road bike friendly!

We passed briefly by Alnwick, Bamburgh and Warkworth castles and enjoyed a brief stop on Holy Island having crossed the causeway. It was a great effort by everyone but ‘Hardly Any Coast to Hardly Any Castles’ is perhaps a better title!

A few learning points from today:

• Plan a realistic route that allows time to stop and enjoy the experience
• Plan a route that follows roads and paths, not mountain bike trails!
• Follow the route!
• Stay together!

Day 5 To the Pub!

A less ambitious plan today. A stunning route from our base to a local pub, making today’s cycle a real success. 25 miles of remote, unspoilt, virtually traffic free, rolling hills, a warm, wonderful pub lunch with local beers just as the rain started, and a quick 9 mile, predominantly downhill ride home. Perfect!

Day 6 The Borders

With Ewan heading north to home, we were four again. Some interesting, scenic, remote cycling today as we travelled from Otterburn to Eaglesfield, near Lockerbie, driving one leg of the journey each and cycling the rest. Crossing the border into Scotland for a brief period. Arriving at our last accommodation in time for a celebratory glass in the sunshine.

Day 7 A Relay Home

To facilitate some cycling on our route home, we split into pairs today, driving 25km and then cycling 25km. For my part, I cycled the most stunning route across remote undulating roads, encountering a waterfall, long downhill stretches and some very challenging uphill sections, more undulating countryside and flooded roads followed by a canal path and a well timed pub stop before the final drive home.

Cyclists love a bit of Strava and now there’s a little bit more to love with the introduction of ‘Local Legends’.

‘Local Legends’ are individuals who have cycled a stretch of road (segment) more times than any other Strava user in the previous 90 days. ‘Local Legends’ are awarded a golden crown for each segment they lead.

It’s not about speed, it’s about repetition. After the Raid Local, I figured I must be in with a chance of being a ‘Local Legend’ on Cleeve Hill at least.

Not so. Apparently there are others who have cycled it more times than I have in the last 90 days, although I doubt anyone has done it more times in a single day! However, my disappointment was short lived, and my excitement rekindled when I discovered that I was the ‘Local Legend’ for Harp and Ham Hills combined and for 25 other segments.

Just as I was beginning to enjoy my ‘Local Legend’ status, I received a message from Strava that my title had been taken from me and I was no longer the ‘Local Legend’ for one of my awarded segments.

I feel I like an olympic champion who has just been stripped of a gold medal, although, clearly I need to get some perspective. I’m not sure the short-lived elation is enough to withstand the disappointment whenever one is taken away from me!

I was asked recently if I could share my top ten tips for living well with Parkinson’s.

I remember reading a Top Ten list compiled by the late Tom Isaacs when I was first diagnosed and finding it really helpful. The experience of living with Parkinson’s differs from person to person. This is my list……

World Parkinson Congress (WPC) Ambassador – Barcelona 2022

I am thrilled to be chosen as one of the fifteen Ambassadors for the World Parkinson Congress in Barcelona in 2022.

WPC Ambassador Announcement

It is a privilege to be working alongside these inspiring people from around the world, some of whom I had met at the last WPC in Kyoto last year.

Reflections from the WPC Kyoto 2019

Along with 2,600 people from 65 countries, I attended the 5th WPC in Kyoto last year. The WPC unites the global Parkinson community for a high-level, scientific, and educational program. Organised into four days of pre-congress courses, plenary sessions, workshops, and discussions, the WPC 2019 explored the most recent and cutting edge science and clinical research as well as advances in treatments designed to improve care and quality of life for people living with Parkinson’s.

The WPC’s mission is to ‘provide an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. By bringing physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, each Congress allows for a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease.’

I found it hard initially to be surrounded by so many people with Parkinson’s, many at more advanced stages than myself. I very quickly realised though that I was part of an amazing community of people from all over the world who are truly inspirational. I met many people I had read about or corresponded with before and also many new people, some of whom I have enduring friendships with. The educational content of the meeting was phenomenal and I was pleased that I had spent many hours before the congress compiling my timetable of ‘must take part in’ sessions, presentations and workshops. There was so much to choose from and something for everyone.

The energy and enthusiasm created from this diverse group of people brought together by one common goal was incredible as we learned together, laughed together, shared insights, experiences and ideas. Witnessing first hand the commitment, expertise and energy that goes into finding better treatments and ultimately a cure for Parkinson’s was in itself uplifting. I knew well before the end of the congress, that I was part of something very special and I knew I wanted to become more involved in the next one.

Coffee breaks and lunchtimes were another opportunity to meet people, to chat, to share our experiences, ideas and hopes. They were also an opportunity to try a range of experiences on offer including reiki and massage therapy. The renewal room provided individual areas where we could rest, relax and on occasion sleep as we needed throughout the day. The travel, the learning, the networking, the heat and of course Parkinson’s meant this was a much needed and valued facility for many of us. The organisers truly had thought of everything, except perhaps they might have underestimated the challenge for many of us of eating lunch with chopsticks!

I had looked forward to the congress but I had no idea that by the time I left, I would not only feel better educated, I would feel I had been involved in something very special and inspirational.

I had planned a couple of days before and after the congress so I had chance to see some of the sights, to sample the local cuisine, to travel to Osaka and Nara and, although I hadn’t imagined I would, I managed to spend a wonderful day cycling around Kyoto too!

For anyone with an interest in Parkinson’s if you can only attend one meeting, it is the World Parkinson Congress that will leave you better educated, better connected and better resourced whether you are living with Parkinson’s, caring for someone with Parkinson’s or whether your clinical practice or research is linked to Parkinson’s.

Plans are already well underway for the next WPC in Barcelona from 7th-10th June 2022 and I’m delighted to be playing a small part in it. For more information, please follow the links below get in touch should you wish to discuss anything.

World Parkinson Congress 2022

WPC 2022 on Facebook

I met Jonny in Kyoto last year at the World Parkinson’s Congress. He too has Young Onset Parkinson’s and he cycles, so naturally, we’ve followed each other on Facebook and Twitter ever since! He recently tweeted this story and it brought a smile to my face and warmed my heart. I felt compelled to share it.

Jonny’s Tweet:

“Two years ago someone left a brand new road bike outside my house within a hand written message that said ‘Exercise is good for Parkinson’s.’ Many miles later I look back and will never forget that ultimate random act of the deepest kindness.”

You can find Jonny on twitter at: Jonny Acheson (@pdinfocus)

Thank you Jonny for sharing such a heartwarming story.

‘The Final Nail in the Coffin’

“An event that causes the failure of something that had already started to fail”

It was perhaps inevitable but after a full 12 months and 7,500km of training, 90,000m of hill climbing and being as ready as we’ve ever been, we’ve had to cancel our challenge in the Alps again.

In the grand scheme of things, with the impact of Coronoavirus on individuals and communities, I’m not really complaining. I’m just taking a moment to feel sorry for myself (and the others) before finally putting this challenge to bed and coming up with a ‘Plan B’.

‘Plan B’

“An action or set of actions for doing or achieving something that can be used if the preferred method fails”

If we can’t cycle the Alps, there are plenty of other roads available to us. We are currently exploring options…………

‘C’est la Vie’

“Situations of the type that happen in life and you cannot do anything about them”

We can’t control the quarantine regulations and therefore we have no control over having to cancel our Alps challenge. We do have control over how we react to it. As with most things in life, we pick ourselves up, dust ourselves down and make the most of the situation. Watch this space!

A hilly ride yesterday with the Sunday morning group. Lovely company, glorious sunshine and a beautiful route but hilly and I found it really hard. No personal bests today and the rest of Sunday was a write off for me as it’s taken me 24 hours to recover! Doesn’t bode well for The Alps….! I have to remember last week felt great and was just as hilly and another 20km further. Completely unpredictable!

This week saw me reach a milestone. This year, I’ve cycled over 5000km on this beauty.

During the same time, I’ve only driven 500km in this beauty!

Strava Stats!

Hard to justify keeping the car…….

It doesn’t feel right to consider my last few rides as training. They have been in beautiful sunshine, with great company, fabulous cake stops and some of the most stunning countryside. I can’t think of anything I’d rather be doing. Getting faster and fitter is the added bonus!

1. To The Blue Zucchini in Tetbury (88km with 1011m Climb)

For the biggest slice of carrot cake ever!

2. To Chedworth Farm Shop (73km with 1033m Climb)

Possible the best ever Sunday morning ride. Most of the group, beautiful day, fast and fun!

3. To The Jolly Nice and The Lakes (87km with 904m Climb)

A fast ride out to The Jolly Nice to meet these lovely ladies for an early evening ride out to the Lakes and then a mindful cycle home in the evening sunshine along miles of quiet country lanes.

24 Days

A few days rest after The Raid Local and already we need a new challenge. A ‘Covid Compliant’ Alpine Adventure …….in 24 day’s time.

777km

Cycling 777km from Lake Geneva to Nice.

13,000

13,000 metres of climbing

Six Cols

• Col du Telegraphie
• Col du Galibier
• Col de L’Iseran
• Col d’Izoard
• Col du Cormet de Roselend
• Col de la Bonette

Five Cyclopaths

Great to be out with the Sunday Cycling group again.

A lovely route out to The Old Prison at Northleach. The company was great, the rain held off until the last ten minutes and the bacon sandwiches at The Old Prison were fabulous.

After two weeks away from my bike, the hills felt hard, so it was a pleasant surprise to find my Strava stats showed twenty-three personal bests and a new ‘Local Legend’ crown. Oh the joys…….and the pressure to keep this one!

Humour me….

Available for 24 hours only!

https://www.bbc.co.uk/iplayer/episode/m000k6yz/points-west-evening-news-18062020

From 22 minutes 50 seconds………

Some of The Cure Parkinson’s Trust (CPT) team, Will Cook (CEO) and Mike Tindall (Patron) are used to being in front of the camera but for me, as one of CPT’s ambassadors, my first ‘first’ of the day was being filmed by the BBC. The three of us were talking about the exciting Raid Local, a socially distanced cycle challenge taking place on 28th June, for a news item to be aired on BBC Points West on Thursday 18th June at 6.30pm.

Not as easy as it looked, filming also included a few laps up and down Horsely Hill. Oh, alright then, a section of it, not the whole hill. I wondered briefly if this might count as my ‘hill rep’ training for the day but that thought was soon quashed!

Lured by the blue skies before the forecast thunderstorms, my enthusiastic fellow cyclists, and the prospect of a fun, sociable (socially distanced) ride, what else could I do? My second and third ‘firsts’ were conquering the ‘W’ and Bear Hill, two of the most fearsome hills the Stroud Valleys has to offer. They hadn’t been in my plans for today and perhaps that was the key: no time to dread them……

Not sure if my legs, lungs or gears would be up to it, I was delighted to find that all three coped admirably. Thanks to months of hill training, they weren’t nearly as hard as I had imagined they might be. Helped by good company, a good helping of Mrs R’s flapjack before we set off and a positive outlook, I really enjoyed them. I need to learn never to underestimate the power of my slightly wonky brain. It’s not just my legs, lungs and gears that need to be up for a hill challenge, my brain needs to be up for it as well. Believing I can do it is a huge part of the battle.

In addition to my 100 mile cycle on Monday, it’s proving to be a busy week. My hope as I write this, exactly five years on from my diagnosis of Parkinson’s, is that someone in those difficult newly diagnosed days takes some comfort, hope and inspiration from seeing what can still be possible. If I knew then what I know now, those first few months would have been so much easier to deal with. As I write this, I should perhaps feel tired but I don’t, I feel exhilarated by achieving these ‘firsts’.

100 Mile Monday

We’ve often said “If it’s not on Strava, it didn’t happen’ but despite only recording half my ride, my aching limbs are testament to the fact that I did indeed complete a 100 mile ride yesterday.

With a ride time of 7.5 hours and an average speed of 21.5km, it was a good effort but I wasn’t alone in my efforts. Our original 100 Mile Monday team grew into four distinct teams:

Team 1 – The First Timer Team

This was always going to be a tough one for Alison, Paula, Julia, Christine and Kate. With only two 100 mile days between us, this was a first for most of the team. Particularly so for Kate, who doesn’t cycle and so had to borrow a bike! Despite our lack of 100 mile credentials, we never doubted that we would do it. Not only that, we did it our way: as flat as possible (I know, Julia, except for the hilly bits!!) in great spirits, with great humour, a great many stops and some might say (some may not), with great style! What a fantastic achievement.

Team 2 – The Hilly Hundred Team

With a steely determination to conquer a few significant hills within their 100 miles, Caroline and Paul were spotted briefly at the foot of Cleeve Hill at 8am when those of us who were daunted enough by 100 miles without hills opted for the flatter route and went around the hill rather than over it. This was a tactic we planned to adopt throughout the day. Regular updates from Caroline and Paul by WhatsApp kept us informed of their progress, punctures and punishing hill climbs.

Team 3 – The Pro Team

John, John, John, Dave and Malcolm, the fastest of the 100 Mile teams set off later in the morning, only to overtake the First Timer Team by our first stop of the day and arrive back some significant time ahead of us.

Team 4 – The Socially Distanced Team

Taking social distancing to the extreme, Ewan did his first 100 miles ‘with us’ from 450 miles away! Definitely with us in spirit, and with regular updates, very much one of our team.

It was an extremely hot day for all of us except Ewan (East Coast Scotland!), and as is my experience with these wonderful people, we all completed our respective 100 miles with much humour, a few saddle sores and great team spirit.

Well done team!

A 100 mile cycle with friends.

What a way to start the week.

What a way to ‘celebrate’ five years since my diagnosis of Parkinson’s.

What a way to support the relaxing of lockdown requirements.

What a way to train for the Raid Local.

What a way to enjoy the great outdoors.

What a way to keep fit and feel good.

What a way to go!

What a joy to cycle with our Sunday morning group again this morning after three months of lockdown…..

My mission this week was to cycle a total elevation of 3,700km from the vast range of Cotswold hills that surround us. On the 28th June for The Raid Local, I shall have to do this in one day.

I cycled six days out of seven. My training was to test a few things that will influence how successful I am on the day. Like all good test runs, there was some learning from this one….

Learning

• We have hundreds of hills in the Cotswolds
• Hills are hard
• The more hills I climb, the harder they get
• The harder they get, the slower I am
• The slower I am, the longer it takes
• The longer it takes, the more tired I get
• The more tired I get, the more breaks I need

And herein lies the problem!

This week, I climbed 3,758km of elevation and it took me 16 hours (moving time). There is no allowance for stops at junctions, traffic lights, stops at the top of the hill, water stops, food stops, loo stops, rest stops or photo stops. Granted, I cycled 291km and we need ‘only’ do 137km for The Raid Local. So, if I remove 154km @ 25km/hr, that’s approximately 6 hours. If I add in 35% stop time to cover all of the above, that’s approximately 6 hours. Without allowing any time for the fact that as the day goes on, I’m likely to get slower, then I need approximately 16 hours to do the challenge.

Thankfully, a week after the longest day, the sunrises at 4.46am on 28th June and sets at 9.11pm. That gives me 16 hours and 25 minutes of daylight hours. Just enough…..if it all goes to plan!

An early start for me then……..

Today’s ride was always going to be a little different. I had arranged to meet with Will Cook, the CEO of The Cure Parkinson’s Trust, and Mike Tindall, a Patron of The Cure Parkinson’s Trust to do some hilly cycle training in preparation of the Raid Local which we are all taking part in.

It’s not every day, that I have the pleasure or pressure of cycling with the boss (best behaviour required), a sporting hero (best cycling required), having so many photos taken (best cycling gear required) and all during our socially distanced times (2m apart at all times required).

The rain and cold at the beginning of our ride ensured we were cold and wet before we even got on the road but the rain eased off soon after we set off to tackle those Cotswold hills. The pace was comfortable, the company was great. One advantage of being out with the boss and a patron of the charity was the invite from Charlie Ralph, the Chair of The Cure Parkinson’s Trust to visit his garden for homemade elderflower cordial and warm flapjacks. Given that there was a considerable hill to climb to get there, (you can’t get anywhere in the area without climbing a huge hill) this was a wonderful and very welcome first stop.

Great cycling some different hills. I had believed I had cycled every hill in Gloucestershire but apparently not! Great to help raise some publicity for the charity, great to clock up another 800m of climbing towards this week’s goal of 3,700m oh, and great to bump into Jamie Dornan in the car park as we finished our ride. Could he possibly be persuaded to join us for the Raid Local? If he doesn’t, it won’t be for the lack of us trying!

More training with these guys next week…….

On Monday, it will be exactly five years since I was diagnosed with Parkinson’s. I’d prefer to let the day pass by without reference to this fact but the day is imprinted on my memory and there is no hope of Monday, coming and going without my acknowledging this.

So, how could I mark my five year anniversary? I could wrap myself up in a day of (justifiable) self pity or I could tackle a 100 mile cycle with friends. Let me think for a nanosecond. Of course, I’m going with the latter.

There will come a day when I won’t be able to cycle but today is not that day!

What better way to ‘celebrate’ than with a 100 mile cycle, with friends, sunshine forecast, lockdown easing, summertime, beautiful countryside, laughter, exercise, the great outdoors. No time for even a fleeting sense of self pity. My kind of day!

Hills, hills and more hills……

I sincerely hoped I’d eventually learn to love them by now but……I’m still waiting for this to happen! Gloucestershire hills can be unforgiving: steep, sharp turns, uneven surfaces, gravel, pot holes, flood water, debris, branches, narrow lanes, to name a few of the hazards. So despite trying, I’m finding it difficult to find the love.

I do love my bike and love cycling and give me a quiet country road, slightly undulating, good road surface, where I can pick up a bit of speed, when the sun is shining and that’s where I find the love!

But with 18 days to go until the Raid Local, there’s still a lot of hills to conquer! A new one for me today – Bear Hill, with a maximum gradient of 30%……..Oh and in case that doesn’t finished me off, a few other hills totalling !,000m of climb. And still nowhere near the 3,700m climb I need to do on the 28th June……..

Wish me luck!

I once read that ‘You can’t be sad while riding a bike’. I couldn’t agree more but I can’t find any evidence that ‘You can’t be absolutely knackered while riding a bike’!

The tallest building in the UK, The Shard stands at 310 metres tall. Last night, I cycled up hills totalling twice the height of The Shard, covering 620m of elevation and found it exhausting.

On 28th June, for The Raid Local, I need to cycle up twelve times the height of The Shard……..

That’s a lot of climbing!

The Raid Local challenge is to cycle 137km and climb 3700m of hills on 28th June 2020, to raise awareness and funding for The Cure Parkinson’s Trust. This is a colossal challenge for the fittest of cyclists. 137km is hard enough but add in hills totalling nearly half the height of Everest in a single day and you might begin to appreciate the scale of the challenge!

Have we gone mad? Quite possibly!

Why 137km?

This was the distance we were due to cycle on our postponed Raid Alpine challenge starting from Geneva on 28th June 2020.

Why 3,700m Elevation?

This was the total elevation we were due to cycle in the Alps on that first day.

Why? Why? Why? Why?

Because throughout the winter, in the rain, cold, sleet, hailstones, wind and occasional pleasant days, we were out cycling up the hardest hills that Gloucestershire had to offer us to get fit enough for the challenge. We can’t let all that hard work go to waste!

Because The Cure Parkinson’s Trust supports vital research that provides hope for those of us living with Parkinson’s Disease, that there might one day be a treatment to slow, stop or reverse the progression of the disease. Parkinson’s disease hasn’t stopped its relentless progression during the lockdown!

Because it’s exactly five years since my diagnosis of Parkinson’s and I want to prove to myself that I can do it!

Until an effective treatment is found, exercise is the only thing that has been shown to slow down the progression of the disease. If ever I needed a reason to get up and get moving, this is it!

What Next?

Watch this space………..more details to follow soon………..

After so many weeks of lockdown, it was truly wonderful to meet up again with some girlfriends for a socially distanced, sociable cycle. These girls can cycle far and fast but today there was an equal emphasis on cycling and socialising and I was reminded of how much I love:

• The girls!
• Their friendship
• Their laughter
• The joy of cycling without always feeling the need to compete!
• Exercising my mind, body and soul
• Reminiscing over some of our shared experiences and adventures
• Our beautiful countryside
• Miles of virtually traffic free roads
• The relaxation
• The sunshine
• That whilst we all enjoyed a sociable cycle we’re already planning our next challenge……

I loved that today, cycling and chatting were of equal importance and a four hour ‘cycle’ consisted of just over two hours cycling and just under two hours chatting!! We did however cover 45 undulating kilometres at a reasonable pace which all credit to Julia she managed in a single gear! Great to be back with the girls!

I’ve grown to love a challenge and I’m so disappointed not to be setting off on our Raid Alpine challenge this year to raise funds for The Cure Parkinson’s Trust.

So, I am delighted to be invited to do a local challenge on 28th June, the day we would have started The Raid Alpine challenge. It’s still in it’s planning stage, so details to follow but it’s certainly enough to keep me training hard for another few weeks……

After weeks of cycling solo, the government guidelines have changed and with the change, I’ve found a new motivation to clock up those miles. My goal? To cycle 300km this week with friends whilst keeping within the slightly more relaxed Covid exercise guidelines.

My first cycle of the week, was a 50km round trip in lovely sunshine with a friend. Mindful, relaxing and so lovely. Sitting uncomfortably in a field, two metres apart, for our ‘coffee’ stop, it was evident, it doesn’t really matter where you are, it is the people you are with who make it special.

Tuesday, I clocked up another 100km with a friend who we often refer to as Tigger because of his endless energy. Thrilled that I could keep up with him for much of the 100km and thrilled to have great company along the route.

A day to recover, then a cycle to and from The Jolly Nice to meet another friend. A wonderful route through Cotswold villages while we chatted. Only a slight easing of the restrictions on meeting people outside our own household but such a huge impact it has had on me to be able to meet up with friends again.

And finally for this week, to take me over my 300km goal, a 60km cycle with John in the late afternoon sunshine.

Clearly, there is much more to cycling than simply riding a bike! Thank you to all you wonderful people who helped me reach my goal and made this week so much fun.

Despite the inevitable postponement of The Raid Alpine Challenge, cycling has still kept us Cyclopaths busy this year.

This year, between us, we have:

Cycled 15,306k

Climbed 151,629 metres (17 times the height of Everest)

Spent 717 hours in the saddle

(Don’t underestimate the pain & discomfort!)

Cycled on 325 occasions

Cycled in rain, hail, Fog, wind, Floods, sunshine and under rainbows!

Cycled at Home and Abroad

Cycled with friends

And more recently, Cycled alone

Challenge or no challenge, we are fitter than we have ever been!

It’s been a long time since I last posted. This blog black hole has been mainly because it was recently confirmed that The Raid Alpine challenge has sadly been postponed and won’t happen this year.

Given that the majority (in fact, possibly all) of my blogs have been about training for this challenge, there seemed little to write about.

On reflection, there is LOTS AND LOTS to write about, I just struggled to find the motivation amidst my disappointment.

Because of the Coronavirus lockdown, much of my recent cycling had been alone. This is nowhere near as much fun as cycling with friends and surely cannot be anywhere near as much fun to read about.

So many people have asked about my training and my plans now the challenge is postponed and have asked me to keep them updated.

So many people are facing terrible hardships as a result of the Coronavirus and subsequent lockdown that it seems insensitive for me to moan about not being able to do a cycle challenge.

I’m generally not a ‘moaner’ and a little ‘normality’ during such surreal times, would be welcomed by me and hopefully by others too.

So I’m back at the blog…..Watch this space……….

Walking in the park this morning with the dog, I started speaking to a lady I’d never met before. We exchanged pleasantries about the beautiful sunshine and how nice it was to be out.

From our two metre social distance, it took me a while to realise this lady was close to tears. She was finding it difficult to find anything to smile about. She talked of a friend with terminal cancer who she couldn’t support in the way she wanted to. We talked compassionately about those people around the world who are experiencing terrible consequences of the Coronavirus and the resultant lockdown.

As we chatted for a while longer, we shared snippets of our lives and we talked about the things we were grateful for. It’s the kind of conversation I have had with strangers many times. However, this time when I returned home, I received the following lovely message.

‘Dear Alison, How very lovely to see you and chat in the park! It has hugely lifted my spirits to share with you-thank you so much! Wishing you a happy day. x’

It made me think about the power we all have to make a difference to someone’s day and how important it is in the current climate of isolation and social distancing that we take the time to reach out (metaphorically) to others.

Anyone who cycles with us knows that when we cycle in a group, John and I rarely see each other. My average speed is half John’s average speed. He is fiercely competitive and thrives on the challenge of being the fastest, going the furthest and climbing more hills than anyone else. Usually all three together! A 40km cycle inevitably turns into 65km and a 65km route easily becomes 100km as he pushes himself further. I simply cannot keep up and it’s no fun trying and continually failing!

Currently, we can either exercise outdoors alone or with people we live with, so our choices are limited. We can either cycle alone or ‘together’. Worried that cycling ‘together’ would actually mean cycling ‘alone’, I ventured out with John yesterday.

He valiantly stayed in front, keeping the worst of the wind off me while I practised drafted behind. He waited at junctions while I caught up and for most of the journey we were within a few metres of each other. Usually with me trying hard to keep up and John trying hard to resist the temptation to disappear off into the distance. Until that was, the last few miles of our planned route when the lure of home tempted me one direction and few more hills tempted John the other direction!

A beautiful day for a cycle, a lovely route and good company for the parts of the ride we did ‘together’!

For the first time in a very long time, I am finding it hard to motivate myself to keep exercising. The fact that exercise has been proven to slow the progression of Parkinson’s is usually a pretty big motivator in itself and exercise is a great coping strategy. Obviously social distancing regulations have played a significant part but I’ve been reflecting on what other factors might be involved.

Routine

Without fail, twice a week for the past four years, I have trained with my personal trainer at the gym. When my training session is in my diary, I never think ‘Will I or won’t I?’ or ‘Maybe later’. Without question, I get up and just do it!

No routine = No Reason

Just Do It!

I can’t take credit for the phrase ‘Just Do It’ but the sentiment works for me. If I get up and go to the gym first thing, I never fail to exercise. If I take the ‘I’ll do it later’ approach, ‘later’ sometimes simply does not happen.

Leave it Until Later = Leave it until Tomorrow!

Commitment

I have a commitment to train with a friend once a week and we share a personal trainer for this session. If I didn’t turn up, I would be letting my friend and my trainer down, so yet again, I never question it, I ‘just do it’.

No Commitment = No Commitment

Friends & FUN

I enjoy exercising with others. Most of my cycling is with friends. The occasional solo cycle is great but for a long, hard, training cycle, the company of friends makes the whole experience so much more enjoyable no matter how hard it might be physically. I go further and faster, have more fun and enjoy it so much more when training with friends.

No Friends = No Fun!

The Great Outdoors

Cycling outdoors is my exercise of choice. With our outdoor time restricted, I’m trying to find an ‘at home’ exercise that will give me the same buzz as cycling outdoors does. But there isn’t one! I simply cannot find anything to like about our indoor turbo trainer! No wind in my hair, no company, no fresh air, no sights, sounds or the sunshine that comes with the changing seasons. I really must try harder!

No outdoors = No Motivation!

Goal Setting

Each year, I set myself a physical challenge to ensure that I exercise harder and more regularly than I might otherwise do. Whilst our Raid Alpine challenge hasn’t been cancelled, as with everything else, it is under a cloud of doubt and so I’m finding it harder to maintain my commitment to such intense training, with the concern that it might have to be postponed.

No Goal = No Training!

The Feel Good Factor

I feel better after exercise, physically and psychologically. My Parkinson’s symptoms are less noticeable after an exercise session and I know I am doing something that gives me the best chance of an active future. Starting the day with exercise makes me feel positive and energised for the rest of the day. I am the fittest I have ever been and that feels great.

As with most of the rest of the world, almost overnight my routine has been interrupted, my freedom to exercise with others has ceased and my ability to go outdoors limited. At the same time, my kids, home from university are desperate to walk the dog, so I haven’t got the same demands from her! My exercise goal – The Raid Alpine sits under a cloud of uncertainty and my ‘just do it’ mentality has been rocked.

It’s been useful to reflect on what helps and what hinders my motivation to exercise. When the time comes to return to some normality, I will ensure I reinstate all the elements that make my exercise regime work for me. I look forward to that day and in the meantime, like everyone else, I have to make the most of the situation we all find ourselves in and do what I can to keep my self as fit as possible because one day our lives will return to a more normal state.

During 2020, I’ve done three months of hard, hilly cycle training: 37 cycle rides, most of which I’ve arrived home exhausted from, nearly 102 hours (moving time) covering a distance of 1782km and climbing 22,200m of hills and yet…..

I’ve climbed just over twice the height and twice the distance that we need to do in the six days of The Raid Alpine.

A little context

Had I not returned home after each cycle, I could have reached Slovenia, Budapest, Stockholm, Madrid or Krakow on my bicycle by now.

AND

I have cycled the height of all the following mountains combined:

Ben Nevis – 1,345m

Snowdon – 1,085m

Kilimanjaro – 5895m

Machu Picchu – 2430m

Mont Blanc – 4810m

Matterhorn – 4478m

Mount Olympus – 2918m

Yes! All of these combined….

I’m very aware with the current pandemic, we are likely to at least have to postpone this challenge, although we haven’t had this confirmed yet. So, while cycling in the great outdoors is still permitted, albeit solo, rather than in a group, I’d best keep training…….

Another sunny day, another day of social distancing and another day of ‘stay at home’ except to exercise.

There is much concern about the impact on people’s mental health and wellbeing of social distancing and isolation, amidst health, employment and financial concerns and so much uncertainty.

My antidote to all things stressful is to get out on my bike but whether it’s on your bike, walking or running, being outdoors has taken on a whole new level of freedom that many of us had previously taken for granted.

We are so lucky to live a few minutes from glorious countryside where social distancing is easy to achieve, so John and I cycled some local hills, enjoying a slow, mindful pace or so I thought! On reflection, I enjoyed a slow, mindful pace, enjoying the fresh air, the tranquility, the wind on my face, the sights and sounds of the countryside and the quiet roads, deserted except for a few fellow cyclists or walkers. John enjoyed the cycle but despite his patience, was a little frustrated by the slow pace and is keen to go out alone tomorrow for a ‘proper’ cycle!

With the go ahead from Boris to leave the house once a day to exercise, I yet again opted to cycle.

None of my three boys are particularly keen cyclists. There are frequent mumblings that parental obsessions with all things cycling may have put off any budding Bradley Wiggins in our family!

So it was wonderful when Rory enthusiastically agreed to join me. Three days of social distancing clearly does strange things to teenagers!

We thoroughly enjoyed a sunny, easy paced cycle over 26km in lovely countryside. There were lots of cyclists out and lots of families out walking and taking. I can’t help but wonder if we might as a nation become a little fitter and a little more in tune with each other as a consequence of this period of social distancing. It would be good to think that some positives might unfold over time.

Amidst a stark ‘Stay at Home’ message from the Prime Minister, a little gift….we’re allowed to leave the house to do one form of exercise a day. After debating for a nanosecond what kind of exercise that might be, John and I chose cycling!

During these unprecedented times, it is lovely to be able to enjoy the sunshine, our gorgeous countryside and to maintain a little degree of normality.

Even in these difficult times, I have found a lot to be grateful for this week.

I am grateful beyond words that my Dad is recovering well following his heart surgery.

I’m grateful for the skill, expertise and dedication of the doctors, nurses and all the other NHS staff who made this possible during such challenging times.

I’m grateful that my Dad had is surgery before the demand on ITU beds and ventilators overwhelms the NHS.

I’m grateful that he should be well enough to be home before the surge in demand for NHS services. Home has to be the safest place for him as soon as he is able. His bed, ventilator and the highly trained staff who have cared for him when he needed it most will then be available for others when they need it most.

I’m grateful for the support of family and friends in so many ways, always.

In such stressful times, it is even more important that we take a breath, calm the mind and be grateful for what we have.

For all sorts of reasons, we haven’t cycled together since Lanzarote:

• Work commitments
• Family commitments
• The weather
• The Coronavirus
• Ewan living 450 miles apart from the rest of us!

So, it was lovely to cycle today with John A, John A, Roland and Caroline. A socially distant cycle – note the lack of team photos, no sharing of snacks, no welcome or congratulatory hugs and 2 metres between us (often considerably more as I tried to keep pace)! But it was great to do something in a near normal manner in such abnormal times.

60km cycled amidst our beautiful countryside where social distancing is a natural phenomenon, remote country roads, passing only the occasional car, walker or horse rider, 1100m climbed, 2 metres apart. While many other exercise options are no longer available to us, thank goodness for cycling. The mental and physical health benefits from being outdoors and from exercising can only help build our resilience in these unprecedented times.

Ewan enjoyed a socially isolated cycle in sunny Scotland and of course we all shared and congratulated each other on our respective Strava stats and PBs!

We’ve proved it possible to retain our sense of team despite the geographic distances involved and we have proved it possible to retain for a short time at least, some sense of normality amidst so much uncertainty.

1. Uphill is hard, downhill terrifying!

2. The heavier we are, the harder it is

3. Regular rest stops are Essential

4. The Cycle Tracking App Relates to Your Menstrual Cycle not your Bicycle!

5. Rehydration is Vital

6. Team Kit = Team Work

7. Style is a Personal Thing

8. You Can Never Carry Too Many Jelly Babies

9. Months More Hill Training Ahead………

10. It’s All for a Good Cause

I thought ‘Bloody Hell – I’m going to have to wait for Alison again…….and there she was, right behind me!’

Anonymous

Either, I’m getting quicker or everyone else is getting slower…….sometimes I’m even at the front!

Great to have the support of these fabulous guys.

Guest Blog by Ewan Mac<ean

Preparing for the Raid Alpine 2020

0-10%: An honest assessment of how prepared I felt arriving at our Lanzarote training camp to cycle previously unattempted distances and heights over consecutive days in a totally new environment.

25%: Approximately the number of the Cure Parkinson’s Trust Raid Alpine group that met for the training camp. If this bunch is reflective of the group as a whole then despite our different backgrounds, different abilities and different health issues, we will have a fabulous team spirit and a combined will to crack the task ahead! Speaking of will, Will Cook deserves a shout. Will is our leader and oozes calm authority and general niceness. He will undoubtedly be a strong hub to our collective group wheel.

50%: Kit, kit and more kit!! Having experienced the Lanzarote heat and, an issue for me that I’ll really have to address, the daily length of time exposed to the sun, the realisation, although I had a fair idea, that I don’t have half the kit required for the Raid! Many thanks to Alison for lending me sleeves, who knew they would be so useful?, and to Roland, my roomie, for the ‘bum’ butter, to protect my other two bits that are actually slightly in front of my bum! 🙈 🥜

On that theme a new saddle is a ‘must’, new shorts with extra padding are a ‘must’, and I’ll be googling ‘extra strong testicle butter’ as soon as I get home!! 🥴 If it’s not been marketed yet then I’ll shortly be making a pitch on Dragons Den!!!

75%: As a group we cycled many miles and took on some serious climbs. Climbs similar to those that we will have to complete over and over in the Alps. Many thanks to Francis for planning them out. Francis clearly thought through the distances and gradients to make the Lanzarote cycles as reflective as possible of parts of the days in the Alps.

The 75%? Well, I’ll keep training hard over the coming months but a big lesson for me is that the Raid, like life, is a long game: 1. to be enjoyed and 2. best played at a sustainable pace. Holding it at 75% effort up the mountains will hopefully see me complete each day without gassing out and retain the ability to move to the next day in a sustainable condition! Slow and steady will be a discipline but an essential one.

100%: Admiration. Total admiration for those within our group who have Parkinson’s. I would put myself down as a pretty fit 55 year old and I’m taking on what to me is a huge, huge physical, mental and no doubt emotional journey. To have now spent some time with Alison, Janet and Leona and see how they have to strategise what are more usually fairly normal every day tasks, then chose to get on a bike and cycle up mountains over long distances, you could be forgiven for thinking they’re slightly mad! However having spent some time with them and better understanding their condition, they are far from that, they are amongst the bravest and most committed people I’ve ever met. I’m 100% in awe of them. For them to devote themselves to this task and to raise as much money for CPT as possible has got me 100% hooked into doing the same.

0%: Finally, back to 0%, my own personal zero! Despite the recent few days of total bike envy and me consistently talking a good game to whoever would listen regarding acquiring a new top end carbon bike when I get home – 0% is the chance of me being allowed to!!