The Ramblings of A Cyclopath
Blogs about living with Parkinson’s
I’m grateful that even during months of lockdown, we have always been able to exercise outdoors. I’m grateful we live in such a beautiful area where social distancing can require no effort at all. I’m grateful that, whatever the weather, we ventured outside and took the time to enjoy it all. Have a lovely day, whatever the weather. x
After giving myself a severe talking to, having received many lovely messages of encouragement and support following my ‘CBA’ blog and with a ray of sunshine sneaking through the clouds, I finally donned my cycling gear for the first time this year and got on my bike.
Now, I’d like to give glowing reports but it was a bit cold, a bit hard work, a bit far and a bit wet. I was bit slow, a bit sore and a bit off balance but other than that it was perfect start to this year’s training!
Thanks to John who came with me ‘for a little warm up’ before doing some ‘proper exercise’. A very sincere ‘thank you’ to everyone who took the time to message me. I have been really touched by your support, encouragement and suggestions to help find my ‘get up and go’ again.
I cycled 36km, was outdoors for two hours, came home wrapped myself up with the dog and a blanket and slept for the following two hours but most importantly, it has given me the kick start I needed. I realise it will take more than one ride to get back on track, so I have a goal (more about this another day), I’m making a plan and in the absence of anything else in my lockdown diary, I have no excuse!
For a ‘bit off balance’ I mean just a bit wobbly setting off. Not the ‘in danger of falling in front of other road users’ kind of off balance. So you can sleep well tonight. x
I can’t motivate myself to do much exercise at the moment. Instead, I find myself taking a robust ‘I would rather stay at home in the warm’ stance. It’s not like me at all. I suspect there are many of us feeling the same with the cold weather, the dark, short days and the social deprivation of another lockdown.
With no immediate end to the lockdown in sight, I turned to Google for suggestions to help overcome this lack of motivation. I typed in a few words to describe how I was feeling and instead found myself inundated with suggestions and explanations for my lack of ‘get up and go’. With the luxury of time, I began compiling a list of possibilities.
‘Apathy’ and ‘depression’ were the first terms I came across. They sounded a little melodramatic for the way I was feeling but I added them to my list. For balance, I added ‘lockdown blues’ and ‘fed up’ as well as they sounded a little more generic and less concerning.
Now, I am not usually a hypochondriac but by this time, I was beginning to enjoy myself, so when I came across ‘Seasonal Affective Disorder (SAD)’, it sounded plausible and I added it to the list as well. ‘Winter blues’ seemed to be another term for ‘SAD’ but I added this anyway. A simple case of ‘laziness’ also seemed to fit the bill, as did feeling just a bit ‘fed up’ and having ‘lethargy’, so I added these too. Before I knew it, my vague ‘I’d rather stay at home in the warm’ feeling had become a long list of potential disorders.
‘Behaviour that shows no interest or energy and shows that someone is unwilling to take action, especially over something important.’
‘A common mental disorder characterised by persistent sadness and a lack of interest or pleasure in previously rewarding or enjoyable activities.’
‘Extreme tiredness resulting from mental or physical exertion or illness.’
‘A lack of energy and enthusiasm.’
‘The medical name for this winter depression is seasonal affective disorder (SAD).’
‘Seasonal Affective Disorder is a type of depression that you experience during particular seasons or times of year.’
‘Situational depression.’
‘Averse or disinclined to work, activity, or exertion.’
‘Annoyed, unhappy, or bored, especially with a situation that has existed for a long time.’
‘can’t be arsed: used when you do not want to do something because you feel lazy.’
I was getting carried away with my ‘research’ at this point and made the mistake of searching for synonyms for apathy only to find that these included words such as indifference, dullness, insensitivity, weakness, inactivity, idleness and disregard. Logic got the better of me at this point and I realised I had to stop ‘googling’ or I could easily spend another day at home in the warm, avoiding exercise.
My list was far too long to be of any real help, so I had no sooner compiled it when I started to whittle it down again using absolutely no scientific or evidence-based criteria whatsoever.
For apathy, I could relate to having no interest and no energy, but I took issue with the suggestion of an unwillingness to take action and I was more than a little upset that I might be perceived as dull, insensitive, weak, inactive or idle! On this basis alone, I decided to rule apathy out in favour of something more appealing.
Lethargy sounded very similar to both apathy and fatigue, so I crossed this off my list too.
Depression seemed to be by far the most serious of my potential diagnoses so to avoid sounding like a hypochondriac, I ruled that out despite learning that depression affects 50% of people with Parkinson’s at some point during the course of their disease.
Having never been prone to the ‘winter blues’ or ‘SAD’ during my past 51 winters, I am not keen to start now. I thought these highly unlikely so I ruled these out too.
I quite liked the idea that I might simply be ‘fed up’ like everyone else with the ongoing social restrictions and reduced exercise options due to coronavirus, so I kept this on the list, just in case. It seemed to me that ‘fed up’ was fairly synonymous with a mild form of ‘lockdown blues’ so I took the latter off the list to avoid confusion.
I couldn’t really bring myself to accept a label of plain old ‘laziness’ even although there was, admittedly, an element of this at times. ‘Fatigue’ is probably a more appropriate description than ‘laziness’. ‘Fatigue’ however, deserves a whole blog of it’s own and can’t be squeezed into today’s ramblings, so I took them both off my list.
I reflected on whether compiling and deconstructing my list had been helpful to me in any way. I realised there was one thing that they all had in common. That was the very clear evidence that exercise is one of the most effective things we can do to help combat most of these conditions. Forgive me but I’m sure lack of motivation to exercise was what kick started this whole process……………
This left only ‘CBA’ on the list. ‘CBA’ is a concept I was introduced to when my three teenage boys were all at home. At that time, I was working long hours and I remember thinking how lovely it might be to have the opportunity in which to have some ‘CBA’ time. Maybe my time is now.
With the benefits of exercise, too impressive to ignore, on Monday morning, I’m going to get back into my exercise routine. I’m going to write a plan over the weekend, set a few realistic goals, share them with my family, get their support and get moving again.
In the meantime, I’ve got another 48 hours in which to enjoy my ‘CBA’ time.
Images Source: ClipArt Library
We all understand that Parkinson’s is not contagious and self isolation will not protect us from getting it. I’m not seriously suggesting they are in any way similar diseases but like Coronavrus, Parkinson’s has been described many times as a global pandemic. With both conditions affecting millions of people worldwide, I can’t help but notice there are a number of other similarities between the consequences of living with Coronavirus and the consequences of living with Parkinson’s. In the case of both conditions:
You are no longer able to do all of the things you want to do
Feeling ‘normal’ seems a long time ago
You lose your sense of smell
Behind the mask, no-one can see your facial expression
They interfere with your social life
The rules change regularly – just when you think you understand them, they change
They increase your risk of anxiety and depression
They impact on every aspect of daily life
Everyone around you is affected too
Millions of pounds have gone into research
Thankfully, we now have a vaccine for Coronavirus and one day life will return to normal. Come on Parkinson’s let’s catch up!
With cafes and pubs shut, sadly our usual refreshment stops during our cold, wet, winter cycles are no longer an option. There’s only one thing for it……!!
There’s a solution for every problem!
I was thinking recently about the many times over the past five years when I have told a friend or acquaintance that I have Parkinson’s and the varied responses I have received. For the most part, I’ve had a huge amount of support, and compassionate responses when I tell anyone. I understand that it can be difficult to know what to say. As with everything else sometimes we get it just right and sometimes we don’t. The responses below offer some insights into the reactions of others. Enjoy them, they are all absolutely true.
Laughing out loud may not be a typical response, but when I shared the news with some of my best friends, we all laughed and laughed until we were crying with laughter. It was absolutely the most appropriate response with this lovely group of girls. All of us knew what the diagnosis meant, none of us knew what to say, so we did what we always do when we’re together and laughed until our sides hurt.
I told a friend who replied that it couldn’t be true because I was too young. Promising to get in touch in the next couple of weeks, I haven’t heard from her in five years.
‘Don’t tell anyone because people will think about you and treat you differently’
‘I have tinnitus. You can’t begin to imagine how awful it is. There is absolutely nothing worse……’
‘Be kind to yourself, look after yourself and do something every day, no matter how small, that makes you smile.’
By far the most common response I’ve had. No words needed. This action says it all.
Often accompanied by a hug.
‘What do you need from me?’
‘Tell me what I can do to help.’
‘I’m here if you need me.’
‘Oh, F***, Oh F***, Oh F***ety F***!!!’
‘How long will it take you to recover?
‘You’re lucky! Of all the progressive degenerative neurological conditions, this is the one to have.’
Images Source: ClipArt Library
I never used to be late for anything. I was always on time, no matter what the occasion. I could always manage a last minute rush if I needed to but for the most part, I was organised, in control and easily on time. I confess to having had a sense of frustration with those who were late, those who appeared to ‘pfaff’ and be disorganised. I am acutely aware that now, all too often, I am the one who appears to ‘pfaff’ and be disorganised, no matter how much preparation I put into trying to be on time.
You see, Parkinson’s is a time thief. It infiltrates my days and my nights and steals time from me. It does so stealthily, creeping up on me gradually, at first, hardly noticeable but with ever increasing presence and persistence. The stolen time is the extra minutes that daily task take to complete or a task that is only necessary as a result of living with Parkinson’s. I no longer have the luxury of the full 24 hours that I used to enjoy in my pre Parkinson’s days, in which to organise myself.
Having the memory of a goldfish doesn’t help either. I frequently leave the house only to return a few minutes later for something I have forgotten. I assumed that eventually the requirement to wear a face mask would register in my subconscious and I would routinely take one with me everywhere, like I do house keys or medication. Having forgotten one five times in as many days, it would appear this is not yet the case!
(The extra time it takes to do something because of the effect of Parkinson’s)
I estimate that Parkinson’s steals two hours each day from me. That’s the equivalent of 14 hours a week, 2.5 days a month, or one whole month every year.
In a bid to remain punctual, I initially thought I could simply give myself longer to get ready, I could arrive on time and no one else would be any the wiser. But once again, Parkinson’s gets the upper hand. It is not simply the amount of time required to do a task, it is any one of a number of interruptions, that set me back too. The dog barking, a text message, even a flight of thought to something other than the task in hand all add a delay to even the simplest of tasks, as each redirection of my attention requires time to refocus and carry on with what I was doing.
I’ve learned that if I’m running late, any attempt to rush is futile. The tiniest release of adrenaline, designed to help me react more quickly, in fact makes my tremor more troublesome, my fine movements less accurate and my memory even worse than usual. I drop things, forget things, fumble around even less effectively. So trying to hurry up is not the answer, it only adds to the problem. If I find I’m running late, the most effective thing I can do is to stop for a minute, take a deep breath and relax. There is however, no easy answer. With this approach, for those I keep waiting, particularly for those who find my tardiness frustrating, perhaps worse than appearing disorganised or ‘pfaffing’ is arriving late looking as if I have made no effort at all!
Image Source: ClipArt Library
In the past five years, I don’t recall ever having more than three hours unbroken sleep in any single night. It is one of the consequences of living with Parkinson’s. One of the many aspects of living with the condition that at first might seem unmanageable but which gradually become the new ‘normal’.
If I wake following three full hours of sleep, I’m grateful, as I know this is not to be taken for granted. I have long since given up any concept of how much sleep I ‘should’ have and simply accept, gratefully what I do get. I have stopped lying in bed willing myself to get back to sleep, instead preferring to get up and do something purposeful until I feel sleep returning.
Since my relationship with sleep deteriorated, I have noticed the link many of us make between the quality of sleep during the night and our prediction of what this might mean for the quality of our day ahead. If we wake from an unsatisfactory night’s sleep, how often this leads us to make negative predictions of how the day will unfold.
‘I’m going to struggle today as I haven’t slept properly’
‘I’ll never stay awake. I’m exhausted before I even leave the house’
‘I feel terrible, this day is going to be a tough one’
I can’t help but think that by framing the day ahead with such negative thoughts we are setting it up to be a negative day.
If lack of sleep were the only consequence of Parkinson’s, I might wrap it up in sympathy, smother it with affection and give it my undivided attention. I might occasionally wallow in it and allow it to influence my plans and to predict the the quality of my day. But of course it’s not the only consequence, it is one of many and I cannot see any merit in turning a ‘bad’ night’s sleep in a ‘bad’ day.
This relationship we harbour between the quality of our sleep and the quality of the day ahead reminds me of our relationship with the weather. How often do we watch the weather forecast, plan our day accordingly, only to find the weather is not what we had expected. How disappointing to have cancelled our plans in anticipation of rain, only to find that the forecast was wrong and for at least some, if not all of the day, the sun was shining. To have spent that day wishing for something better and so to have missed how wonderful it really was or how wonderful it could have been if only we’d opened our minds to that possibility. And on those days, when the weather forecast proves correct, even in the rain there are still beautiful moments.
I have a recurrent dream….I’m walking down a street. A busy street that is not familiar to me, with people rushing past me. These are not people I know. I feel unsettled and I am not sure why. Then, to my horror, I realise I am not wearing any clothes. I’m embarrassed and ashamed. People walk past me laughing, pointing, talking about me, stopping and staring. A few look the other way and some look at me with sympathy. No-one offers me anything with which I can cover myself up so I remain naked and exposed.
There are many iterations of this dream and psychologists generally agree that they probably don’t represent a literal desire to be naked in public. I find this reassuring even though I was fairly certain this wasn’t my underlying ambition. There also seems to be a general consensus amongst psychologists that the dream is not an erotic one. Again, I was fairly certain about this already because George Clooney wasn’t chasing me down the street lusting after my naked body. The much less exciting explanations are that the dream: 1) Relates to being embarrassed about something about myself that other people don’t know about or 2) Suggests the feeling that I have recently opened up or exposed myself and left myself vulnerable.
Now, I’m no psychologist but I’m fairly certain that I understand what the dream means for me.
I find it a deeply personal thing to tell someone that I have Parkinson’s. I’m exposing my vulnerability, I’m revealing my imperfect brain. Unless I choose to follow this up with an explanation of the impact this has on me, this leaves other people free to make their own assumptions based on any prior knowledge they might have of the condition and Parkinson’s is misunderstood in so many ways.
Until recently, it was my choice to tell or not to tell, when to tell and how to tell. Now as my tremors have worsened, it is fairly obvious to others at times that something is wrong and in some situations, I feel the need to explain. I clearly I don’t lose sleep over it if I’m dreaming but it is something I would like to feel more confident about.
I’m practising saying it with my head held high, with an air of confidence that conveys the message that I’m simply sharing a fact which is just part of my everyday life, not exposing something deeply personal. On a scale of things to worry about in relation to having Parkinson’s, there really are bigger things I could focus on if I was inclined. For now, however, I’m determined to get better at telling people without feeling so vulnerable. I thought it might help if I practiced by walking naked down the street just to see if George Clooney might chase me. Oh, sorry, that’s a different dream……!
‘When you blame others you are avoiding some truth about yourself’
Deepak Chopra
I was recently asked how long before diagnosis did I start to notice something was wrong. The short answer is three years. However, that doesn’t make for a blog, so a more comprehensive explanation is that for those three years, I did a fantastic job of burying my head in the sand and deflecting the blame on to anything but me. I became a serial blamer and complainer.
It started with my car……
Not long after I’d bought a new car, it developed a problem. The accelerator pedal didn’t seem to respond accurately to the pressure I put on it whilst reversing. This made reversing a difficult and slow process. I took my car back to the service department and told them about the problem. They could find nothing wrong. For six months, I repeatedly took it back to the service team, they repeatedly looked at it and could, repeatedly, find nothing wrong. When I eventually exchanged my car, imagine my disappointment to find that my new car had exactly the same problem, only it seemed to be getting gradually worse.
It wasn’t just my car. My desktop and laptop computer keyboards malfunctioned at the same time. Keys on both keyboards would randomly throw up double letters or at times not respond to my tap at all. The cursor kept skipping lines mid sentence. I had both keyboards replaced twice but the faults persisted, in fact the fault got worse over time but even I realised that I couldn’t justify requesting a third replacement.
To add insult to injury, the computer mouse began to act erratically too. It no longer did what I wanted it to. It felt like it was operating on a bed of treacle. I cleaned it regularly and replaced it twice with no effect. It’s sluggishness made my hand hurt and even my arm ache. I couldn’t get to the root of the problem, so I replaced my mouse with a trackpad and because my right arm was still aching, I started to use my left hand to control it.
I discovered numerous ‘faulty’ household items, returning them to the retailer and complaining about their ‘poor quality’ on a regular basis. My tin opener wouldn’t work so I took it back to the store. Adept at complaining, I had it replaced without fuss……but it didn’t work any better. Not long after this, I tried to return a new set of knives, none of which would cut through anything but butter but it was the same assistant and she saw me coming and I didn’t stand a chance!
I politely asked the man who had cut a new set of door keys to redo them as none of them worked smoothly and seemed to stick. He slightly less politely refused and so I went elsewhere for a second set but they didn’t work properly either.
I began to wake numerous times every night, uncomfortable and unable to roll over without difficulty. As our mattress was many years old, even I didn’t feel I could complain about it. Instead, in search of that elusive good nights sleep, I bought a new one. The new mattress didn’t do as promised, and my sleep was no better than before, so back it went, as did the subsequent one and the one after that.
My age (46 at this time) got the blame for many things including my changing face which no longer smiled so readily and my slow reaction time. Ageing and years of nursing were blamed for progressive back pain. Ageing, along with too much to do and too little time, were blamed for my increasingly poor memory. Ageing and hormones were blamed for excessive sweating and poor temperature control. Ageing was blamed for stiffness in my arms, cramps in my legs and a slowing of my walking pace. Ageing was blamed for my desire to be home by 10pm on a night out.
I blamed my choice of shoes for repeatedly tripping me up and I blamed my husband’s choice of film for my inability to stay awake after 8pm. The shoes I got rid of but the husband, I kept.
‘Facts do not cease to exist because they are ignored’
Aldous Huxley
Eventually, my excuses wore thin. I couldn’t blame my new shampoo for being unable to wash my hair with my right hand. I couldn’t blame my new pen for being unable to write legibly. I had to gradually lift my head out of the sand and consider that perhaps the problem wasn’t down to poor quality goods after all. Perhaps it was me that wasn’t working properly. Once that seed of doubt had been sown, it became harder and harder to ignore. There were many, many more examples but at some point I had to stop blaming and stop complaining and face reality.
Within ten days of acknowledging the problem was with me, I had a diagnosis of Parkinson’s. If I thought anyone would listen, I’d ask for a refund or an upgrade to a better model but it appears that I have exhausted all my refund options!
Image Source: ClipArt Library
During my nursing career, I spent many years working as part of a cardiac rehabilitation team. My role involved exercising with people who were recovering from a heart attack or heart surgery. We would teach them to exercise safely and effectively. We exercised with them to help them gain the skills and confidence they needed to continue independently. We involved family members. After a few weeks, in the formal course evaluation, participants would report:
Feeling better physically
Feeling better mentally
Feeling less stressed
Enjoying exercising
Having fun!
Gaining confidence
Enjoying socialising
Losing weight (if desired)
Enjoying life more
Feeling less anxious
Those of us running the course could see these improvements before looking at the formal evaluation. The transformation in people’s physical fitness over a seven week programme of exercise and education never ceased to amaze me. These men and women of all ages who had experienced a life threatening cardiac condition were not only physically fitter, they regained confidence and that in turn helped them return to other activities they enjoyed. Many became fitter than they had ever been and as a consequence, were happier and healthier. For years I have marvelled at what exercise could achieve.
So, when I was diagnosed with Parkinson’s five years ago I didn’t hesitate to take up a range of activities to help me keep as fit as I could be. I was lucky, I had the knowledge and the resources to take up a range of activities. I found a brilliant personal trainer (thank you Frederic Riboldi), a great training partner (thank you Sharon) and loved going to the gym and I found a love of cycling (thank you Cyclopaths).
Parkinson’s inevitably progresses but the evidence is that it progresses slower than if I wasn’t exercising. This is a great motivator in itself but there are all the other other benefits too. Exercise has the power to transform lives.
In an ideal world, everyone with Parkinson’s would have access to and be supported to exercise regularly to enable them to live as well as they can.
Sports Parkinson’s aims to do just this. It’s a brilliant initiative, please take a look, register and encourage friends and family to do the same. Be involved from the start of something that promises to make a huge difference to the lives of people living with Parkinson’s.
Like many of us, I have spent many years juggling work, family, home, socialising and the numerous other demands on my time. Time pressure made multi tasking the norm. Again, like many of us, lockdown has imposed a slower pace of life on me. However, in truth, my slow down started long before lockdown.
Parkinson’s is a thief. It silently steals my time, as it progressively makes every day activities harder to do. Initially, this served only as a huge frustration. However, I don’t wish to spend every day feeling I should be doing more and feeling frustrated, so I challenged myself to see if I could think about things differently and sidestep the frustration.
Recently, when Covid regulations allowed, I was planning to take a very familiar 450 mile car journey. My usual approach would be to calculate how long the journey ‘should’ take and set myself an ambitious time scale in which to get there. I could do the journey within speed limits in around seven hours but there was never any pleasure in it, it was a means to an end. I put myself under unnecessary pressure and inevitably either arrived in ‘good time’ but exhausted or delayed by roadworks, ‘late’ and frustrated. Neither of these end results were very positive but both were entirely self imposed. I rarely needed to arrive at a given time for any reason other than one of my own making.
Realising, that Parkinson’s was never going to allow me to complete this recent journey as I previously would have done, I decided to take a different approach. I didn’t calculate how long the journey ‘should’ take or what time I ‘should’ arrive. I simply decided to do the journey on a day when I could simply leave when I was ready and to get there when I arrived! I decided to stop whenever I wanted to and see how the journey unfolded.
It turns out, I wanted to stop frequently! For breakfast, and again, not long after, for lunch. I stopped to look at the outlet stores in Gretna Green and had a little detour to revisit the ‘Welcome to Scotland’ sign we had celebrated at during our cycle from Land’s End to John O’Groats. I stopped to photograph the autumn colours during a particularly beautiful part of the journey and my final stop was for a rest, when not far from home, an incredible fatigue washed over me. A little snooze, a brisk walk and I enjoyed the final few miles home. The journey took me eleven hours. I arrived relaxed and refreshed and for the first time ever, I had thoroughly enjoyed every bit of the journey.
The only difference between these journeys was my approach to them. I was able to shelve any frustrations and any thoughts of ‘must do’ and simply enjoy the slower pace. It was altogether a much more enjoyable experience. I am very aware, that our busy lives so often put us under time pressure but for those occasions when we have some choice, adapting our approach can make a real difference to how we feel.
I can say this, knowing I sound smug, like I’ve found the answer to one of life’s challenges because any sense of smugness was snatched away from me when I received a speeding fine for a section of the journey I was enjoying my journey so much, I hadn’t noticed a reduction in the speed limit!
My speed awareness course made me more speed aware in accordance to the law but I still feel I’ve learned another valuable lesson about speeding through life. Maybe, it’s not about the destination but about the journey after all.
I recently wrote about the effort involved in trying to appear ‘normal’ and it got me thinking about what exactly is ‘normal’? So, I checked the definition and I’m not sure that it is something I actually do aspire to be.
‘Normal’
Conforming to a standard; usual, typical, or expected
BUT, if I don’t aspire to be ‘normal’ then perhaps I’d be considered ‘abnormal’. So, I checked the definition and I’m not sure that being abnormal is desirable either!
‘Abnormal’
Deviating from what is normal or usual,
typically in a way that is undesirable or worrying
Yet, since my diagnosis of Parkinson’s, I have unintentionally and inadvertently spent an enormous amount of time and effort to try to appear ‘normal’. For ‘normal’ I mean, ‘normal’ for me. The way I was before my diagnosis, the way that others who know me, would expect me to behave. I don’t know why I spend so much energy, time and effort trying to appear ‘normal’ but I suspect it is due in varying degrees to the fact that I feel self conscious and I don’t want to feel uncomfortable myself or to make other people feel uncomfortable. That I’m stubborn as a mule and determined to retain the illusion of my former self for as long as I possibly can. That I’m a control freak and I cannot yet reconcile this with having less control over my body and sadly, even in 2020, I sense at times a stigma and shame associated with having a neurological condition.
But it is exhausting and it is getting increasingly difficult to appear ‘normal’. Frustratingly, I find myself apologising for my abnormal attributes. ‘I’m sorry my hand is so shaky’, ‘Excuse me, how embarrassing, I’ve forgotten what we were discussing’.
‘Would you mind doing this for me please? I’ve hurt my hand and can’t write at the moment’ I found myself saying to a receptionist the other day when I couldn’t write well enough to fill in a form. The honest response would have been ‘Would you mind doing this for me please? I have Parkinson’s and it affects my ability to write legibly.’ The latter, being honest and educating others at the same time has to be the much better approach and yet I don’t find it easy to tell a stranger such a personal thing.
I have developed tremors of my mouth and facial muscles. They move involuntarily, without my consent. I now have a range of pouts that convey mixed messages varying from “I’m blowing you a kiss’ to ‘I’m sticking my tongue out at you’. So, I can continue to make excuses, try harder and harder to appear ‘normal’ or perhaps I should be more open and honest. So, when the current lockdown is over and life returns to some ‘normality’, I’m going to test a different approach and see if I can conserve my energy for enjoying each moment rather than exhausting myself trying to appear ‘normal’.
So, if I am no longer aspiring to be ‘normal’ but I’m not keen on being ‘abnormal’ either, I’ve decided to strive for ‘pizzuberance’.
‘Pizzazz’ – A combination of vitality and glamour. ‘Exuberance’ – The quality of being full of energy and cheerfulness.
‘Pizzuberance’
A completely made up word to describe a little pizzaz and a sprinkle of exuberance, without even a hint of normality
So from now on, I’m not going to use my energy striving for ‘normal’, I’m going to have much more fun and keep my energy to develop my ‘pizzuberance’. If that means sticking my tongue out at you or blowing kisses to strangers then so be it!
A few months ago I was contacted by a young woman who had recently been diagnosed with Parkinson’s. She was keen to meet and I was keen to support her in the way that I had been supported in those early, very difficult days.
We arranged to meet in a local cafe. I remember doing the same when I met a young woman who was diagnosed four years before me. I remember wondering if I would be able to tell she had Parkinson’s from how she looked or how she acted. Would she be able to drive? Would she be able to walk normally, eat normally, talk normally? As it was, she drove to my house, she walked to the cafe (in heels), where she ate for England and talked the hind legs off a donkey and I was remarkably reassured by all of this! But there were other more subtle things that I noticed. The same things that I now see in myself and recognise are part of having a neurological condition. The struggle to find the right words at times, or forgetting what I am trying to say mid sentence, holding my cutlery in a slightly clumsy way and dropping things easily. Slow clumsy movements when trying to get money or credit cards out of my bag, doing most things left handed because my right hand refuses to do what I ask of it.
I was sure the young woman I was meeting would have similar thoughts about how I might be and I desperately wanted her to have that same sense of reassurance when she met me. And so, I was on my best behaviour. I took my medications exactly on time so I could perform at my best. We met in the morning as I’m usually more on the ball in the morning. I wore flat shoes so that I had less risk of tripping over my own feet (a regular problem with Parkinson’s). I left the house in plenty of time so I would arrive cool, calm and collected and not get flustered and shaky the way I do when under time pressure. I wanted to go all out to show this young woman that five years on from diagnosis I could act, feel and look reasonably normally.
I arrived at the cafe (a new one I hadn’t been to before). I opened the cafe door and immediately spotted my coffee companion. I can spot someone with Parkinson’s from a mile away with pinpoint accuracy. It’s easy when you know what to look for.
Deep breath, best behaviour….. I made a real effort to put a big smile on my slightly frozen face, waved a friendly wave with my slightly wonky hand and moved towards her. The smile was quickly wiped from my face, when I failed to notice the step, tripped over it, knocked over a vacant table, chair and coffee mug, all of which went crashing to the floor. Everyone in the cafe stopped what they were doing and turned to look at me as I too fell crashing to the floor.
I could not have made a more dramatic, less composed entrance if my life depended on it! I don’t think Parkinson’s was to blame, it was just one of those things that could happen to anyone but it couldn’t have happened to me at a worse moment. If I was trying to look cool, calm and collected, I had failed miserably and my pride was severely dented.
It did act as a great ice breaker and I think my coffee companion was reassured by the end of our meeting, that five years on, although my Parkinson’s was indeed evident if you knew what to look for, if I’d only spotted the step on the way in, I may have passed as being almost ‘normal’ in other ways by most people’s standards! Reassuring for her, reassuring for me, although lately I’ve been pondering about this concept of appearing ‘normal’ but that’s for another blog……
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:
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…….
‘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.
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 are 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!
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 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!
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.
‘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!
‘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.
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!
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’.
‘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’
I’ve been pondering………
Parkinson’s can sometimes feel like the elephant in the room.
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:
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!
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.
.
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:
To combat the stiffness, rigidity and reduced range of movements.
To improve my balance, co-ordination, response time and speed of movement.
To improve my balance, cardiovascular fitness and my brain! There is evidence that cycling can help improve symptoms and may delay disease progression.
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
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!
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.
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!
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.
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.
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:
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!
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.
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.
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……
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!
‘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’.
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!
I am thrilled to be chosen as one of the fifteen Ambassadors for the World Parkinson Congress in Barcelona in 2022.
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.
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.
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)
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!
Hard to justify keeping the car…….
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!
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.
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.
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!
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………
Another twice up Cleeve Hill and my phone battery ran out……..
Another 4.82km, light (and legs) fading, with winds of 34.5km/h, my battery finally ran out!
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!
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…………..
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!
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!
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.
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.
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.
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!
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……
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’.
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:
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.
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.
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.
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!
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….
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……..
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……..
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!
This was the distance we were due to cycle on our postponed Raid Alpine challenge starting from Geneva on 28th June 2020.
This was the total elevation we were due to cycle in the Alps on that first day.
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!
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:
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.
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.
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!
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.
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’.
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.
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!
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.
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.
Had I not returned home after each cycle, I could have reached Slovenia, Budapest, Stockholm, Madrid or Krakow on my bicycle by now.
I have cycled the height of all the following mountains 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.
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!!
With everyone feeling at least a little better, we set off with some optimism for our last day’s cycling. Optimism proved an essential component for our longest day in the saddle……
