Acceptance

Acceptance doesn’t mean resignation; it means understanding that something is what it is and that there’s got to be a way through it.

Michael J Fox

I read about people ‘battling’ and ‘fighting’ Parkinson’s and I understand and respect the sentiment. The terminology alone, however, exhausts me. I don’t wish to spend my days battling and fighting. I’ve chosen not to go to war with Parkinson’s and not to do battle with it, instead I’m learning to accept its presence, listen to its demands and to navigate my way through the challenges it presents, one step at a time.

Words of Wisdom

In his role as Marty McFly, in the 1985 hit movie ‘Back to the Future’, Michael J. Fox travelled between the past and the future. Diagnosed with Parkinson’s, in 1991, at the age of 29. I feel it is reasonable to assume therefore that he is something of an expert, on the past, the future and living with Parkinson’s. If further evidence of his expertise were needed, this quote is widely attributed to him. Such words of wisdom only serve to reinforce my view.

‘Don’t spend a lot of time imagining the worst-case scenario. It rarely goes down as you imagine it will, and if by some fluke it does, you will have lived it twice.’

Michael J. Fox

This summer saw the 5th anniversary of my diagnosis with Parkinson’s. It is a day I would choose to forget but the date and time is inked in my memory. I’m never quite sure whether to ‘celebrate’, curl up in bed for the day feeling sorry for myself or just try to carry on as though it were any other day. This year, I tried to carry on as though it were any other day but found myself reflecting more than usual.

I thought back to a glorious sunny day a couple of weeks after diagnosis. I drove my eldest son to Bath to look around the University. He was excited, as he should be, about the future, and was full of enthusiasm and energy. It should have been a joyful day for both of us. However, my overriding memory was one of feeling distraught at the thought that when the time came for him to leave home, I might not be able to drive him to his university of choice or to help him move his belongings into his new accommodation as he started out on a new chapter of his life. I remember my thoughts spiralling out of control. ‘If I couldn’t do this for him, then I certainly couldn’t do any of this for my other sons, what else might I not be able to do……….’ My enjoyment of that day was marred by such thoughts.

In the weeks after diagnosis, I was riddled with anxiety about my future and how things might be. None of us (except perhaps Marty McFly) know what the future holds but worrying about it can certainly get in the way of enjoying the present. The anxiety associated with diagnosis was overwhelming. I seemed to lose any control of my emotional on/off switch. I started to catastrophise and found I was very good at it!

I instinctively knew that I needed to do something to look after my mental health. Time is a great healer and I am lucky to have the support of family and friends too. I knew however, that in addition to this, I needed to learn some strategies that would help me at the time and in the future. Since then, I have worked hard at developing a range of coping strategies, mainly mindfulness based. I attended a series of mindfulness courses and immersed myself in the associated home practice. It wasn’t easy and has required a dedication and determination. I have invested time and energy in learning these new skills and as with exercise, practising them daily reaps huge rewards. As a result, I have been able to regain some control and anxiety is no longer the problem it once was.

I have since made a number of trips to the University of Bath, helped my eldest son move into and out of various accommodations and thoroughly enjoyed doing so. I have done the same for my middle son, now in his third year at the University of Exeter and I have no doubt I will do the same for my youngest son when he leaves home in the next couple of years.

Our mental health is just as important as our physical health and we need to respect it and nurture it in the same way we do our physical health. Those of us living with Parkinson’s often look to those further into their journey for inspiration, advice and guidance. I found each of these in the words of Michael J. Fox which only confirms to me that it was indeed reasonable to assume that he is something of an expert, on the past, the future and living with Parkinson’s!

Strange

I find when talking with other people about our respective experiences of living with Parkinson’s, we don’t need lots of words or explanations, we have a connection, a bond, brought about by our shared experiences, a shared understanding and a shared uncertainty about our futures. We rarely struggle to find words to describe our experiences to each other in a way we might struggle to explain Parkinson’s to someone who isn’t living with the condition. The nature of Parkinson’s with its unpredictable, diverse and at times bizarre range of symptoms can make it hard to explain and hard to understand.

Recently, a friend sent me a link to The Waterboy’s Song ‘Strange Boat’. ‘Strange’, he said, was perhaps the best description of life with Parkinson’s. I could relate to this immediately on so many levels and started to think about some of the ways in which Parkinson’s is ‘strange’.

Strange

Strange that everyone with Parkinson’s has different symptoms and different rates of progression.

Strange that some days I can write a few lines and other days, I can’t hold a pen properly.

Strange having a face that doesn’t accurately express my emotions.

Strange that whatever time I go to bed and however tired I am, I wake at 3.00am and rarely get back to sleep.

Strange that many people think Parkinson’s is an old person’s disease and that I’m too young to have it.

Strange that my symptoms are so much worse when I’m cold, tired, stressed or under time pressure.

Strange that the loss of one neurotransmitter (dopamine) can be responsible for such a wide range of symptoms.

Strange that Parkinson’s is classed as a movement disorder, when movement is only one of a whole diverse range of symptoms.

Strange that one side of my brain and therefore one side of my body is affected more than the other.

Strange that my jaw moves involuntarily, even when I’m not talking!

‘Strange’ indeed!

Let’s Face It!

Prior to diagnosis, I started to notice that smiling had begun to require a lot of effort. Over time, this has become more and more noticeable. Smiling is no longer a spontaneous occurrence. There is a time lapse from my wanting to smile until my facial muscles respond. To compound matters, when my facial muscles do respond, they do so in a slow, sluggish, half-hearted way. The end result can sometime resemble a grimace more than a smile. This lack of facial emotion or facial masking is a well documented symptom of Parkinson’s.

‘Parkinson’s Mask’ (Hypomimia)

‘A symptom of Parkinson’s that limits the accurate expression of emotion in the face due to a decrease in the speed and coordination with which the facial musculature is activated’ 

This inability of my face to accurately convey emotion has an impact on many of my social interactions. For example, if I am out walking and meet a friend I haven’t expected to see. Pre Parkinson’s, my response would have been to break into a broad smile and clearly and confidently, say what a pleasant surprise. There could be little doubt that my friend would know that I was genuinely pleased to see them and my intention was to stop and chat.

Now, after five years of living with Parkinson’s, if I am out walking and meet a friend I haven’t expected to see, my response is very different. By the time I realise I am approaching someone I know and my slightly wonky brain has sent a request to my face to smile, some time has already passed. My slow and stiff facial muscles take their time to respond in their limited capacity, and so, I often miss the opportunity to greet my friend with a warm smile, or indeed any smile at all. At this stage, my slightly wonky brain hasn’t even begun to think about the need to speak! My friend would have no idea whether I was pleased to see them or not and whether my intention was to stop and chat or walk on by.

Initially, I thought that I might compensate for the absence of a smile, by using the tone and volume of my voice to communicate some positive emotion and interest. However, one step ahead, Parkinson’s has changed my once clear, confident and intonated voice, to a much quieter, slower, monotone. I sound as uninterested as I look! I can therefore no longer rely on my voice to communicate my emotions accurately either.

I fear these factors combined can make me appear stand offish, aloof, miserable or downright rude. To add insult to injury, if my medication is wearing off, my ability to string a fluent, coherent sentence together can evade me and I stumble to find the right words or forget what I am saying mid-sentence.

I confess that on occasions, when I’m not at my best, I have pretended not to notice a friend and to try pass them by without acknowledging them. If unsuccessful at this, then, once I have acknowledged them, I have pretended that I am in a hurry and can’t stop to chat. This is so out of character for me but frustration and embarrassment have conspired to change my behaviour. At times like these it feels preferable to do this than to have to try to explain or excuse my monotonous, expressionless, rambling attempts at conversation!

Wearing a mask like, expressionless face can impact on any relationship, even with those who know me best. When one of my son’s could no longer tell if I was teasing him or not, we started to use a hand signal. This hand signal told him what my face no longer could. I’m having fun with you, I’m teasing you, I want you to join in and laugh with me.

Worse than an expressionless face is one that looks cross or angry when at rest. My family noticed this first and when I mentioned it to a friend, she enlightened me that this is commonly known as a ‘Resting Bitch Face’. It is not unique to Parkinson’s but is not the look I want to portray either!

‘Resting Bitch Face’

‘An unkind, annoyed or serious expression that someone has on their face when relaxed, without intending to’ Cambridge (Dictionary)

My ‘Resting Bitch Face’
(In my head, I too was laughing at the joke!)

There are many hidden challenges to living with Parkinson’s that I wouldn’t expect other people to have any knowledge of. I certainly didn’t before I was diagnosed. I love a challenge and as with most things, they are much more fun and much more likely to be successful when others are involved. So sharing my experience with others and raising a little awareness feels like a positive step in the right direction.

Who Knows?

In a recent blog ‘The Elephant in the Room’, I commented on the fact that when we are out together, people often ask my husband how I am, rather than ask me. A very astute observation by my husband was that ‘I don’t mind being asked about you, but I am not always sure I say what you would want me to’.

We’ve been together nearly 30 years. No-one knows me better, so surely he has some idea about what I would want him to say?

So, I got to thinking, maybe just occasionally, he doesn’t listen to me, maybe he doesn’t ever listen to me! Maybe I don’t tell him or maybe I don’t explain myself very well. Maybe Parkinson’s is just difficult for anyone not living with it to truly understand. Maybe it’s inevitable that his version will be different than mine as he’s seeing it from a different perspective. Maybe as a doctor he finds it all too easy to slip into a medical role discussing my symptoms with friends as though he were at work discussing a patient with colleagues.

Any of these might explain the difference in our respective responses and I suspect there may be an element of truth in each of them. However, another, more likely explanation is the complex and variable nature of Parkinson’s, means that symptoms differ day to day. No two days are ever the same and even if they were, how I feel about them changes day to day. Some days I want to talk about it, some days I don’t. Some days I give into my symptoms and take it easy and some days, I carry on regardless. Some days I can laugh at myself, other days I get frustrated. Some days I have boundless energy, some days I have hardly any. Some days I can manage after three hours sleep, some days I can’t keep my eyes open. There is no way of predicting, no way of knowing. This is part of the challenge of living with Parkinson’s and undoubtedly part of the challenge of living with me.

So, to be fair, no matter how hard he might try, my husband really does find himself in an impossible situation. If Parkinson’s is so unpredictable that I never know how I will feel or what I would say, he certainly hasn’t got any hope of getting it right!

Walk a mile…….

‘Before you judge a man, walk a mile in his shoes’

For many years, a gentleman would walk past our house each day. He occasionally looked up but rarely smiled, waved or spoke. After a while I concluded, despite his relative young age, that he was a ‘grumpy old man’.

One day he stopped by our gate and asked me, rather abruptly, to cut back a branch from a tree in our garden that was overhanging the pavement. He looked unfriendly, stern even, he never smiled and our conversation was short. I cut back the offending branch later the same day. The gentleman continued to walk past our house each day, never smiling or speaking and rarely acknowledging me. As before, I would smile and wave and think of him as a ‘grumpy old man’.

Over the next few years the gentleman walked past our house less and less frequently and more and more slowly until eventually I didn’t see him walking past at all.

I saw him some time later and spoke to him and his wife. I had been diagnosed with Parkinson’s for a couple of years by this time. I remarked that I hadn’t seen him walk past for a long time. When he tried to reply, his speech was so poor that I couldn’t understand him. His wife explained that his Parkinson’s had progressed so much in recent years and after many falls, he rarely ventured out of his home.

In an instant I realised my assumptions about the ‘grumpy old man’ were entirely wrong. The ‘grumpy old man’ was fighting a battle every day to maintain his independence. His walk down our street was fraught with difficulties requiring all of his attention to navigate them safely. He was challenged by his poor balance, stiffness and uneven gait. The overhanging tree branch was just one more unnecessary obstacle to navigate.

His expressionless face was not that of a ‘grumpy old man’ but one where Parkinson’s had stolen his ability to smile. His lack of a wave was because he could not maintain his balance if he were to look up and raise his arm. He didn’t speak as he passed by because he was concentrating so hard on simply staying upright. His daily walks past our house were part of his exercise regime, aimed at keeping him mobile for as long as he could, until Parkinson’s made that impossible too.

The many challenges that people with Parkinson’s face every day when undertaking the simplest of tasks are often not visible to others. I hope by raising a little awareness of the nature of these challenges that I and others might avoid being labelled a ‘grumpy old man’!

‘Before you judge a man, walk a mile in his shoes’

The Elephant in the Room

I’ve been pondering………

Parkinson’s can sometimes feel like the elephant in the room.

Image Source: rawpixel.com

Sometimes after meeting a friend, I realise that we have discussed life, the kids, the universe, my friend’s health, the health of our respective ageing parents but not my health. I sometimes wonder if I don’t make it easy for people to ask about my health or if the significance Parkinson’s as a progressive, degenerative condition makes it too uncomfortable for some people to acknowledge.

During my pondering, I wondered if some of the other reasons people might not ask me are:

  1. In case I have forgotten that I have Parkinson’s and the question might be an unwelcome reminder.

2. In case I might actually tell it how it is and that could take some time!

3. In case I break down and cry and that would just be plain awkward.

4. That I look well, it is easy to assume that all is well.

5. Because they have forgotten I have Parkinson’s or underestimate the significance of it.

6. Because they have asked my husband instead.

7. Because they may feel too embarrassed or awkward to ask.

8. Because they would rather not know.

9. Because they feel it is not the right time or place.

10. Because there are many more fun things to talk about!

I rarely talk about Parkinson’s unless asked. There are indeed many other more fun things to talk about but Parkinson’s is life changing. It is with me every second of every day and so, whether I like it or not, it has a major impact on my life.

I have lots of friends who ask regularly and I’m touched by their concern. Whether people ask or not, many show their concern, friendship and compassion in other ways. I completely respect that people may choose not to ask but I would urge people not to refrain from asking out of concern for any of the reasons above.

If the shoe were on the other foot, I might be concerned about any or all of the reasons above and avoid the question too. Indeed, I have done at times in the past. But now the shoe is on my foot, I would urge you, if you are interested, to simply ask me. There is rarely a bad time, you won’t be reminding me of something I’ve forgotten, I won’t dissolve into tears, I will try to keep it succinct and we can then move onto more fun topics! I don’t need you to ask every time we see each other but it need not be the elephant in the room either!

Image Source: rawpixel.com

Lessons Learned

I’ve learned that, understandably, many people can’t imagine what living with Parkinson’s is like, so this is my attempt at welcoming you to my world…..

I’ve had to learn to create lists for everything (sometimes multiple lists for the same thing) and yet discover it is still possible to forget things!

I’ve learned not to carry a glass of wine in my right hand if I want to keep any for drinking but my left hand manages fine!

I’ve learned that I have to reapply for my driving licence every three years and I can never assume it will be renewed.

I’ve learned to be patient, that many things take longer to do but I get there in the end!

I’ve learned the hard way that chopping vegetables can be a dangerous pastime for someone with Parkinson’s!

I’ve learned that I can only do one thing at a time and that multi tasking is a thing of the past.

I’ve learned to avoid buying shoes with laces or it can take me all day to tie them!

I’ve learned to survive on three hours sleep (and cat naps during the day)!

I’ve learned that every day (sometime every hour) is different. I never (thankfully) have all of the 40+ symptoms all of the time but I always have some of the symptoms all of the time. There appears to be no way of predicting which will occur, when. It’s a guessing game. The unpredictability adds another level of complexity to living with Parkinson’s.

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What’s New?

In the five years since my diagnosis of Parkinson’s I have learned a number of new skills to help me manage an ever changing range of symptoms associated with the condition. These new skills include:

Yoga

To combat the stiffness, rigidity and reduced range of movements.

Boxing

To improve my balance, co-ordination, response time and speed of movement.

Cycling

To improve my balance, cardiovascular fitness and my brain! There is evidence that cycling can help improve symptoms and may delay disease progression.

Mindfulness

Anxiety and depression are very common symptoms of Parkinson’s so I’ve learned and practice some of the basics of mindfulness to try to keep one step ahead.

‘You can’t stop the waves but you can learn to surf’ Jon Kabat Zinn

Playing Bridge

Learning a new skill is thought to be helpful in combatting cognitive problems associated with Parkinson’s such as problems with memory, concentration, inability to multi task, problems with decision making, thinking and planning. Learning to play Bridge was my new skill last year. I’m still learning this year and probably next year too!

All in the Mind (Or not..)

Recently, for the second time in as many weeks, I forgot I had arranged (less than 72 hours earlier) to play bridge with friends. Learning bridge was my way of protecting my slightly wonky brain, in particular, my memory, from the ravishes of Parkinson’s. The irony that it should be bridge games that I forget, is not lost on me.

I had the usual excuses ready: ‘I put the wrong date in my diary’ / ‘Old age’ / ‘The menopause’ / ‘Too many things to do, too little time’ / ‘I got distracted’. These excuses are usually accompanied by a shake of my head, raised eyebrows and some reference to the fact that I never used to forget anything.

I could blame lockdown. Life became simple. I didn’t go anywhere, I didn’t meet anyone, I didn’t have any appointments to keep and so I got out of the habit of checking my diary. I foolishly thought I could ease back into some degree of socialising without needed to diarise everything. Apparently I was wrong!

Image Source: verywellmind.com

‘Bear with me, I fear I’m losing my marbles’, would have summed it up more honestly. The day before, I had spent three hours being assessed by the neuropsychology team at North Bristol NHS Trust after highlighting my cognitive defecits to my neurologist during a routine review. ‘Do you use strategies to help you remember things?’ he asked. ‘Oh, yes, absolutely’ I said ‘I have it down to a fine art. No-one else would really notice. I have lists everywhere for everything. I set reminders, sometimes multiple times for the same event. I’m great at it!’

Not so, it seems!

As the owner of a slightly wonky brain, it’s easy to worry that my cognitive decline is Parkinson’s related. So, imagine my delight to find it’s not just me who has these problems. If I express concern to friends, without fail their response is ‘me too!’ and so we share stories, laughing until our sides hurt, about our experiences of ageing, the menopause and times when our memories have failed us. I’m always reassured by these conversations, that slightly wonky brains appear to be the ‘new norm’.

Image Source: Simonlucasbridgesupplies.co.uk

That day however, by suppertime however, I found myself seeking further reassurance by trying to gauge how well I had performed in my assessment the previous day. I asked my family if they would answer the same questions. After much hilarity at my suggestion that I might be able to remember any of the questions, the family placated me and embraced a suppertime assessment. Reassuringly, they couldn’t answer many of the questions either.

So, I came to the conclusion that if my slightly wonky brain is causing me to lose my marbles, I will never be alone. I’ll be in the company of not only many of my friends but the majority of my family too!

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.

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………

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.

Weather Forecasting

Deciding which weather forecast to use when planning the timing of and routes for our cycle rides is an art form in itself. Cycling for three beautifully sunny hours during a 24 hour period where ice, freezing temperature, gusty winds and rain dominated the weather forecast is nothing short of a miracle! And yet, today this is exactly what we achieved.

We cancelled the usual Sunday morning cycle due to the forecast icy temperatures and a warning from a friend who had fallen off his bike after hitting black ice early in the morning the day before.

However, setting off at midday, we encountered three hours of glorious sunshine in which we could enjoy the beautiful Cotswold countryside. The weather was stunning. Accompanied by Cyclopaths Caroline, Paul and Roland and an old friend, Neeraj, we cycled 76 fairly hilly kilometres.

We took an easy sociable pace and I conquered Ham Hill for the second time in a week. Harp Hill and Stanway Hill seemed easy at this pace and we then enjoyed a beautiful ride out to Broadway Tower.

However, after our coffee stop, as the sun lowered in the sky, the temperature dropped and the cold set in. The others went on, keen to warm up. Neeraj and I took an easy pace home, meaning that we tackled Cleeve Hill, the last hill of the day, as dusk fell. It was a pleasant light uphill but by the time we were ready to speed downhill, we were in complete darkness. Avoiding the numerous potholes is not easy in the dark and was the only bit of the ride that I didn’t enjoy.

Another week’s cycle training completed, with a total of 167km cycled with 2,082m ascent. Sounds and feels like we’ve done a lot but this equates to just one day of our Raid Alpine Challenge in distance and half the amount of hills. So much more training to do………

Thanks to everyone for your great company. I couldn’t do all this training without you all.

Calm After The Storm

Yesterday threw gale force winds, relentless driving rain and cold temperatures our way all day and all night. I couldn’t imagine being able to get out and cycle today.

However, in true British weather style, the winds had passed, the rain had stopped and with true British stoicism, Roland and I ventured out for a hilly 50km cycle. There is something about facing the challenge of a lifetime in less than six months that makes us get on our bikes and ride.

Up Harp hill, which, I don’t really consider to be a hill anymore (progress indeed) with a Personal Best (PB) time. Next up came Ham Hill. Known to local cyclists as a tough climb, I have to confess that I had never actually cycled the length of Ham Hill without having to stop to catch my breath. It is on my list of ’50 things to do at 50′ and today, I did it! I can’t say it was easy but it wasn’t too hard either (progress again).

I learned from Ham Hill today, something about the importance of mental attitude as well as physical preparation on performance. I had a written goal: I wanted to conquer Ham Hill, I have trained hard on hills in recent months, it was important for the rest of my 2020 Raid Alpine training to conquer it. Ham Hill is a tiny fraction of what I will need to do during The Raid Alpine, I needed this tiny achievement to confirm I was making progress. The belief that completing The Raid Alpine is within my reach is as important as any other aspect to my training. I wouldn’t allow any ‘what if I can’t’ thoughts to invade my mind and before I knew it, without much ado, I conquered Ham Hill, with another PB.

Bouyed by the confirmation that I could do Ham Hill, I thoroughly enjoyed the rest of the ride through beautiful undulating Cotswolds countryside. During the ride home down Ham Hill, littered with flood water, debris and potholes, I found myself wishing I was going up and not down it. Now there’s a change in mindset if ever there was one.

As always I returned home invigorated, a little tired but pleased with my performance and thrilled to get 41 Strava Achievements! I’m becoming slightly Strava obsessed but that’s another story……..

My Ham Hill Results

Another Solo Cycle

I couldn’t meet the Sunday cyclists as I wanted to play taxi service for my son, so I set off alone around midday, when others had done their cycle, had their coffee and were on the way home to relax.

Doing the same route that I had done alone last week, I tried to go that little bit faster…..or so I thought. I was actually 10 minutes slower, only 1km/hr slower but soul destroying. At last though, at 50 years old, I’m developing a competitive streak. I’m already planning when to do the route again but faster!

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

Sunday Morning

As is becoming a regular for a Sunday morning, I cycle up Leckhampton Hill to meet the Sunday morning cyclists at Cowley. It’s lovely for Al, Caroline, Jackie, Ric and Nigel to welcome us into their well established Sunday morning group where Al plans a different but invariably hilly route each week, with the essential coffee and cake stop. We rely on Caroline to check the route to ensure Al hasn’t got carried away with the hilly component of the cycle! It was drizzly and dreich for most of the cycle but a welcome stop at The Chedworth Farm Shop, helped energise us for the ride home.

The weather may not have been kind but the company was great and we managed 55km and over 1,100m of hills. (I’ve to climb 3,700m on the first day of The Raid Alpine over 137km!)

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.