New Day, New Start…….

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!

PS: Mum

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

CBA?

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.

Apathy

‘Behaviour that shows no interest or energy and shows that someone is unwilling to take action, especially over something important.’

Depression

‘A common mental disorder characterised by persistent sadness and a lack of interest or pleasure in previously rewarding or enjoyable activities.’

Fatigue

‘Extreme tiredness resulting from mental or physical exertion or illness.’

Lethargy

‘A lack of energy and enthusiasm.’

Winter Blues

‘The medical name for this winter depression is seasonal affective disorder (SAD).’

SAD

‘Seasonal Affective Disorder is a type of depression that you experience during particular seasons or times of year.’

Lockdown Blues

‘Situational depression.’

Laziness

‘Averse or disinclined to work, activity, or exertion.’

Fed Up

‘Annoyed, unhappy, or bored, especially with a situation that has existed for a long time.’

CBA

‘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

Something in Common

Living with Coronavirus – A bit like Living with Parkinson’s?

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!

Image Source: ClipArt Library

RSVP

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.

Laughter

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.

Disbelief / Denial

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.

Advice

‘Don’t tell anyone because people will think about you and treat you differently’

Empathy?

‘I have tinnitus. You can’t begin to imagine how awful it is. There is absolutely nothing worse……’

Words of Wisdom

‘Be kind to yourself, look after yourself and do something every day, no matter how small, that makes you smile.’

A Hug

By far the most common response I’ve had. No words needed. This action says it all.

Tears

Often accompanied by a hug.

Support

‘What do you need from me?’

‘Tell me what I can do to help.’

‘I’m here if you need me.’

Swearing

‘Oh, F***, Oh F***, Oh F***ety F***!!!’

Missed the Point

‘How long will it take you to recover?

Lucky You!

‘You’re lucky! Of all the progressive degenerative neurological conditions, this is the one to have.’

Images Source: ClipArt Library

The Time Thief

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!

Parkinson’s – The Time Thief

(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

03.30hrs

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’

Image Source: ClipArt Library

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.

The Naked Truth

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.

Image Source: Gifer.com

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……!

(Don’t) Blame It On Me……

‘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

Exercise Matters!

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.

Speed Awareness?

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.

Image Source: ClipArt Library

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.

Image Source: ClipArt Library

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.

A Little Pizzuberance!

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!

Image Source: Clipart Library

Making an Entrance

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.

Image Source: Clipart Library

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……

Acceptance

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

Michael J Fox

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

Words of Wisdom

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

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

Michael J. Fox

This summer saw the 5th anniversary of my diagnosis with Parkinson’s. It is a day I would choose to forget but the date and time 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!

Strange

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

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

Strange

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

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

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

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

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

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

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

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

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

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

‘Strange’ indeed!

Let’s Face It!

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

‘Parkinson’s Mask’ (Hypomimia)

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

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

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

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

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

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

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

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

‘Resting Bitch Face’

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

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

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

Who Knows?

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

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

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

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

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

Walk a mile…….

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

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

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

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

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

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

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

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

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

The Elephant in the Room

I’ve been pondering………

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

Image Source: rawpixel.com

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

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

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

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

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

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

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

6. Because they have asked my husband instead.

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

8. Because they would rather not know.

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

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

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

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

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

Image Source: rawpixel.com

Lessons Learned

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

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

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

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

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

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

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

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

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

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

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What’s New?

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

Yoga

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

Boxing

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

Cycling

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

Mindfulness

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

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

Playing Bridge

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

All in the Mind (Or not..)

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

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

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

Image Source: verywellmind.com

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

Not so, it seems!

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

Image Source: Simonlucasbridgesupplies.co.uk

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

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

World Parkinson Congress 2022 Ambassador

World Parkinson Congress (WPC) Ambassador – Barcelona 2022

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

WPC Ambassador Announcement

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

Reflections from the WPC Kyoto 2019

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

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

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

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

Messages of Hope at the WPC Kyoto 2019

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

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

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

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

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

World Parkinson Congress 2022

WPC 2022 on Facebook

A Heart Warming Story

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

Jonny’s Tweet:

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

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

Thank you Jonny for sharing such a heartwarming story.

A Little More Training….

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

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

For the biggest slice of carrot cake ever!

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

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

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

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

And Counting……

24 Days

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

777km

Cycling 777km from Lake Geneva to Nice.

13,000

13,000 metres of climbing

Six Cols

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

Five Cyclopaths

A Sunday Cycle

Great to be out with the Sunday Cycling group again.

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

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

ABC

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

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

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

ABC – Ambassador / Blogger / Cyclist

Image Source: Zenefits

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

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

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

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

A Team Effort

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

Not So Easy!

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

My stats came in four parts:

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

Part 1

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

Part 2

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

Part 3

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

Part 4

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

In Total

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

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

Easy!

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

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

Image Source: Into film.org

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

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

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

Image Source: cool-party-favours.com

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

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

Roll on Sunday 28th – Raid Local.

The Peculiarities of Pedalling with Parkinson’s

When I learned that exercise is the only thing that has been shown to slow the progression of Parkinson’s, I started cycling, overcoming the numerous obstacles that Parkinson’s puts in my way.

Amongst many other symptoms, Parkinson’s affects my balance and coordination, causes dizziness, muscle cramps, dystonia, rigidity, stiffness, pain, slow movement, tremor, fatigue, poor posture and slowed reaction times. It affects my right side more than my left. The presence or absence of each of these symptoms, their severity and their duration are completely unpredictable.

Parkinson’s also affects my concentration, my memory and my ability to multi task. Those who cycle with me know never to rely on me for directions! On our LEJOG adventure, I once cycled eight miles around Tiverton, looking for a way out!

Exactly five years since my diagnosis, I am tackling an enormous physical challenge. To cycle 137km whilst climbing 3,700m of hills in one day. I have trained for this for nine months, in all weather.

This year alone, to prepare, I have cycled an average of 175km each week, spending 222 hours in the saddle and cycling up hills equivalent to five times the height of Everest.

I know from using a Wattbike, that 65% of my power output is generated by my left leg and 35% by my right leg. My posture is asymmetrical and this causes back, shoulder and neck pain. For long days in the saddle, I am making constant adjustments to try to correct these. I am bloody proud of my left leg for getting me up some impressively steep hills!

Parkinson’s causes problems with fine motor skills, so I have difficulty doing things like attaching my lights and Garmin to my bike. By the time I’ve pumped up the tyres (which can take several attempts), zipped up my jacket, fastened my shoes and helmet and put on my gloves, I’ve already overcome a number of challenges. However, as long as I am organised and leave myself enough time, I can be ready to set off with everyone else.

Image Source: Clipartart.com

Recently, my balance has worsened. Pushing off on my bike requires my concentration or I’ll be on the ground before I even get started. I need to concentrate on my balance and I sometimes find it harder when someone is cycling close beside me. If I drop behind my fellow cyclists, or ask them to give me some more space, it’s because I’m concentrating on staying upright, not because I don’t want to talk!

There is an etiquette to cycling in a group and each position in the group carries with it, specific responsibilities. This is important for safety of each group member but it is something that I cannot always be relied upon to comply with.

For example, a ‘turning right’ hand signal poses no problem for me. Try a ‘turning left’ hand signal and as soon I take my left hand off my handlebars, I can no longer control my bike! The cyclist behind me has to remember that a wobble usually indicates an imminent left turn!

Signalling to those behind me to warn them of potholes, obstacles or other dangers in the road is an important element of safe group cycling. However, my reaction time is slower than most. Those who cycle with me regularly know that by the time I’ve seen a pothole, taken action to avoid it, taken my hand off the handlebars, signalled and shouted to cyclists behind me, then it’s too late….I’m in the pothole! They know not to rely on me for such signals.

Image Source: Bikeyface.com

The timing and doses of my medication have become really important. I take more medication when I’m planning a long, hilly cycle. However, what I eat, when I eat, how I’ve slept and a number of other factors all influence how well my medication works. It is an art and not a science and it doesn’t always work as I have planned!

If my medication wears off, my speed, dexterity and even my thinking, reaction time, posture and balance can all be affected. Everything becomes harder, it’s like I’m cycling against the wind or wading through treacle. The tiniest incline feels like a mountain as my legs lose power and my mind becomes slow. I can’t remember which gear lever moves my gears up or down. I have to focus extremely hard to stay upright and brake effectively as my hands shake and dystonia causes my right hand to twist and move involuntarily. A rest, medication and jelly babies usually work after a short time but obviously I aim not to ever get in this state.

So, with my new bike, electronic gear shifters, meticulous timing of my medication regime and lots of practice, I cycle well. In fact I’m fitter and faster than I’ve ever been.

I am joined by a team of fabulous people, all of whom have trained hard and who will find this challenge one of the toughest they have undertaken. We will all push ourselves to the limit of our physical capabilities and the challenge will no doubt test our psychology too as we dig deep to continue to climb those hills long after each and every fibre in our our bodies has yelled ‘stop’.

Is it worth the effort, I have been asked? Absolutely! Cycling is good for my body and my mind. It helps me stay strong mentally and physically. I love being outdoors, the weather has been fantastic and our countryside beautiful. I love a challenge and I’m blessed with lots of friends who will cycle with me despite my poor group skills! I’m also blessed by the support of family and friends who don’t cycle but put up with my endless tales. Apologies to them, I have no intention of stopping cycling any time soon!

Fourth ‘First’

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

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

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

A very welcome rest and refuelling stop!

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

With a Little Help From My Friends

Cycling with friends is so much more fun than cycling alone and There are many wonderful people I cycle with regularly.

This post is a shout out and huge ‘thank you’ to the other lovely people who have joined me for the occasional cycle ride over the last couple of years.

To Alison, Michael and Robbie Plunkett who enthusiastically (Robbie does everything enthusiastically!) cycled around Cheltenham with me one sunny Sunday morning.

To John, Callum, Rory and Kieran Anderson along with Neeraj, Vilas and Seki Prasad. Wonderful to cycle with such old friends.

To Paul Jones for a fabulous day’s cycling around Kyoto. I wouldn’t have attempted it on my own and it was such an adventure.

To Marie & Sally, thank you for indulging me and embracing a cycle around Central Park, despite it not being in either of your ‘top ten things to do in New York’ list

to John, Callum, Rory and Kieran on a Family Holiday in Germany.. Thank you all for indulging me yet again!

To Alison Ferris – I loved your company. Just as well as we did 20 miles more and took two hours longer than planned. Must brush up on my map reading skills! But we did find a pub for lunch that provided sun hats though!

to My lovely little sister who nervously embraced the challenge of reacquainting herself with the joys of cycling and then came back and did it all over again the following year.

To Jim Pascoe Watson for bringing a sense of joy to everyone who has ever cycled with him. For joining us during LEJOG from Weston to Cheltenham with so much enthusiasm and fun despite the saddle sores!

To Claire Lehman for joining us in Devon and leading the team home on the last few hills at the end of a very long day. Chapeau!

To Jackie and CAroline for a birthday cycle and many an enjoyable Sunday cycle.

To Ali, Sally and Marie for embracing a sunny cycle in Seville

To Jane and chris who introduced us to our first real cycle challenge many years ago with the Coast 2 Coast. It took us nearly a decade to sign up to another one! Loved cycling with you again.

To Julie Baillie, my oldest friend who after five years without being on a bike, embraced a 45 mile ride with her usual smile, enthusiasm, sense of fun and energy.

TO THE SUNDAY CYCLING TEAM (AL, CAROLINE, JACKIE, NIGEL AND RIC) WHO WELCOMED US WITH OPEN ARMS, LOTS OF HUMOUR, FABULOUSLY PLANNED ROUTES AND THE BEST CAKE AND COFFEE STOPS IN THE SOUTH WEST!

To the Lanzarote training team for a great few days training for The Raid Alpine.

To everyone who joined us for parts of LEJOG, our Devon and Brecon Beacons cycling weekends, sportives and ad hoc training rides. Too many to name you all (and I’m afraid of missing someone out if I try) but you know who you are…….

Thank You All!

Some Normality

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

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

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

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

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

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

Lighthearted Learning from Lanzarote

1. Uphill is Hard, Downhill Terrifying!

2. The Heavier We Are, The Harder It Is

3. Regular Rest Stops are Essential

4. The Cycle Tracking App Relates To Your Menstrual Cycle Not Your Bicycle!

5. Rehydration is Vital

6. Team Kit = Team Work

7. Style is a Personal Thing

8. You Can Never Carry Too Many Jelly Babies

9. Months More Hill Training Ahead………

10. It’s All for a Good Cause

Longest Day

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……

The Challenges of the Day

  • With different bikes, I struggled to clip into my cleats and should have guessed I would struggle to clip out! Yes, before leaving the resort carpark, I had fallen off. A bit battered and bruised but no major injuries, back to bike hire to fit my own pedals.
  • Despite wishing the strong winds would subside, when they did, we realised just how hot it really was!
  • We climbed 1513m, which felt a lot but is not even half of the climb of any day of The Raid Alpine Challenge!
  • Finding ourselves cycling on a motorway when clearly we should have been on the parallel, much quieter and safer road!
  • On our final 15 miles when we were (very) saddle sore and weary, we travelled for a few miles along the most uneven track where every bump added insult to our already very bruised and sore bottoms, arms, necks, hands…….
  • The last 5 miles, the winds reappeared making us have to pedal to get down the last hill home
  • After 115km, I couldn’t have done any more today

The Highlights

  • We learned by going at our own pace, we could all do long distances uphill, where the hairpin bends and elevations resembled those of The Alps – a great confidence booster
  • Great stops along the way
  • Great company and many laughs
  • It has been great to cycle with Ewan and he has well and truly proved himself to be a fabulous team member
  • We loved the ride and would do it again tomorrow if we could
  • We feel better prepared for the challenge
  • I am very well supported by The Cyclopath team
  • We are in the top fours spots of The Raid Alpine Strava Leaderboard (I know – it is only Monday and everyone else was at work!)

A brilliant but hard week’s training completed.

No Plan!

(Just Realised I Hadn’t Posted Sunday’s Adventures!)

Our plan today was to have no plan today. To keep things flexible, have a range of options and see how we felt as the day progressed.

Ewan has the same stomach upset that John had, so couldn’t cycle this morning. Miraculously, he joined us mid afternoon, feeling a little better but I suspect feeling mostly like he didn’t want to miss a whole day of cycling.

Some great roads, a reasonable pace, some time with the rest of the team before they set off for home, lunch by the sea (for some of us), 80km covered, 1200m climb and back before our bike hire expired.

Perfect Day! who needs a plan?

Too Windy

20km into the windiest cycle imaginable, I completely lost my bottle! Having been swept across the road more than once I couldn’t do today’s route. John, putting aside his competitive streak, had the patience of a saint and stayed with me. Finding a roadside cafe, we stopped for a drink, some respite from the wind and I suspect John thought a quick pep talk, before setting off again.

I had other ideas! Within 5 minutes of stopping, with no knowledge of the Spanish language I had managed to book a taxi that would take me and my bike back to our resort!

Hardier than me, the rest of the team cycled the planned route, arriving back some hours later, a few of them somewhat fraught from the traumas of staying upright in the >40mph gusts of wind.

I’m reassured that the wind speed should be half as strong tomorrow……………

My Big Sis

Guest Blog by Lucy Ferrier

Well, where to start?  Growing up as the eldest of three girls, Alison always had a sense of responsibility and she embraced her role as the elder, more sensible one!

She took her role seriously and enjoyed keeping her younger siblings in check. Alison was kind, fun and as I recall, pretty driven from an early age. 

She left home at 17 and I remember vividly going to visit her in the university halls. She had the place decked out like a ‘proper’ home and I thought she was so grown up! Alison knew what she wanted and worked hard to achieve her goals. I always looked up to her and admired her, ever more so now. In my younger eyes, Alison seemed to have it all. She was good at pretty much everything she put her hand to and I spent many years wishing I could be more like her, but knowing I would never share many of her talents.

Alison has always had purpose, willpower (except when it comes to chocolate) and a strength of character which is most admirable. These qualities have undoubtedly stood her in good stead to deal with the diagnosis of Parkinson’s Disease, which so cruelly interrupted life as she knew it.  

On a summer visit to her lovely home in Cheltenham, we sat outside enjoying a glass of fizz (or two) and she broke the news to me. We giggled like silly school girls and for some reason, this seemed appropriate. It certainly took a bit to sink in, but although this diagnosis was life changing, she was optimistic from the beginning. She said that she was going to tackle this head on, research what she could and do everything in her power to live well with this disease.

Alison has done that and more! She has researched Parkinson’s extensively, embraced fitness and a range of other measures to keep her as well as possible, as well as running a home, supporting her family, and raising tens of thousands of pounds for The Cure Parkinson’s Trust.  

I have no doubt how shattering that diagnosis has been and how incredibly difficult it was for her to accept what life has dealt her. I don’t hear very much about the effects it has had on her as she plays it down. I do understand however that no matter how tough things may be, she does not want pity, or to dwell on things. Her steely determination has stood her in good stead and on a positive note, has opened up a whole new world for her as she discovered the joy of cycling.  

This new hobby, along with fundraising has in fact become something of an obsession for her and for those around her! She has roped my partner, Ewan, into taking part in her next challenge and so, cycling talk, stats and Strava, have all become normal, daily conversations. I have noticed that Ewan communicates more with my sister (through various mediums) than I do! In fact they are both in Lanzarote this week for a training camp!

From our childhood days I always looked up and admired my big sister.  Now I feel full of admiration for the way she has embraced the challenges of this disease and her dedication to raising funds to find a cure. This next challenge is by far the most demanding and I’m truly inspired by her steely determination to see it through.

Team Training

For the first time today, twelve of the Raid Alpine team are getting together for some training in Lanzarote, many of us meeting for the first time.

After an easy journey, we arrive at the resort reception and only half an hour later, with our hire bikes fitted, we were ready to cycle together.

With a route already prepared, we set off together and stayed together for 50km. It was great to see the team beginning to work together and interesting to battle the very strong winds on our homeward bound leg of the journey. It was however so reassuring after my last training ride to feel on top of my game again today and to keep up with the group in fact, leading the group for a brief spell. John’s competitive gene is clearly rubbing off on me!

A big meal and a few more beers than planned, we thoroughly enjoyed our first time cycling with some of the larger group.

Tomorrow promises more winds, more training and more team building. Oh, and of course it’s very lovely to cycle in the warm sunshine.

Guest Blog

TRAINING & TEAM-BUILDING by Ewan MacLean

The Cyclopaths have all been training in our own way: individually, in pairs and in a variety of groups. We are only one small part of a much bigger ‘Raid Alpine’ group who have all been doing the same across many different UK geographic locations. Between us, we have been cycling indoors and out, through some of the worst conditions a British winter can throw at us, as well as undertaking a huge variety of other types of exercise to support our training. Each week, we cover very different distances, do different types of exercise with different frequencies and speeds, tailored to our individual fitness needs.

Most of us know some of the group members, and indeed a number of the group did a similar challenge last year, The Raid Pyrenees, but many of us have never met each other. However, this week, some of us are getting together, many of us meeting for the first time, in a very different location with a very different climate and some very significant hills to climb. It will be the first big step towards us all becoming a ‘team’ this summer with one common goal: to raise funds for The Cure Parkinson’s Trust.

We will of course let you know how it goes………

Wading Through Treacle

Keen to have one more training ride before heading off to the sun for our 5 day training camp, I set off for a hilly few miles.

Cycling with Roland who thankfully was happy to take an easy pace, we set off up Harp, Ham and Castle Hills.

It could never be considered an easy route but today it felt exceptionally hard.

I can only describe it as being like wading through treacle, mentally and physically. My balance was poor, as was my posture. Braking and changing gears were a slow process as if my brain and my body were no longer communicating to each other. My power output was low and my right leg had a mind of it’s own and bumped against my bike frame with every pedal stroke. It moved of its own free will, regularly and involuntarily clipping out of the pedal.

My thinking was slow and I had to work out what to do each time I wanted to change gear. Something any cyclist will know is usually an instinctive response. I was uncoordinated and clumsy. I couldn’t get my meds out of my back pocket or zip up my jacket.

It feels very personal to share with you this failure of my brain and body to work together but I am learning what living with Parkinson’s is like and it’s not how I expected it to be. Many people ask, so it’s an attempt to explain rather than complain. It is what it is.

We all have good days and bad days. I prefer to think of them as productive and less productive days. Much more positive to have had a less productive day than a bad day!

‘If you’re on the outside looking in, it’s hard to understand and from the inside looking out it’s hard to explain’

Wild, Wet, Windy and Wintery

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

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

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

Emergency tree felling to avert an accident….

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

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

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

Road Closed

If you’ve followed The Cyclopaths before, you will know that we view the ‘Road Closed’ sign as a challenge, rather than a warning……

Naturally, news that our favourite, Cleeve Hill has been closed to traffic for three weeks, made us immediately think – how wonderful it would be cycle the hill without a steady stream of fast cars passing us. I have enormous sympathy for all those drivers affected by the closure but on a purely selfish level, this was a cycling opportunity not to be missed…….

Road closure and not a car on Cleeve Hill. Passable by bicycle, so novel was the experience, we tackled the hill from both sides during our 65km ride.

In a Nutshell

Even I recognise that there is a limit to how many details I can post about cycle training without sending everyone to sleep.

So, in a nutshell, in between stormy winds, torrential rain, snow and ice, we have managed to find pockets of calm, dry(ish), warm(ish) weather in which to venture out on our bikes. The sun even shone for periods of time and we could be forgiven for forgetting we were amidst stormy weather warnings.

Clocking up another 130km was for the most part pleasurable and this morning we venture out again. This time, joined by Cyclopath Caroline (Cyclopath: a term of endearment, not a charachter assassination!) and John Wilkinson who is beginning to express a strong desire to join the Raid Alpine Team in the challenge in June. Let’s see if he’s still expressing the same desire when we get back this afternoon!

Mountains to Climb

Bad weather and curiosity got the better of me last weekend and so I subjected myself to an indoor training session on the turbo trainer.

Let’s be clear, I have absolutely no desire to train on a bike indoors. There is no company, no scenery, no breeze, the dog wants to join in and every minute seems like an hour. Let me out on the open roads any day!

Well, maybe not ‘any day’, 50mph winds rendered the weekend too dangerous to venture out, so I spent a hard hour taking the ‘Sufferfest 4DP Challenge’ in the hope that I might prove to be fitter and faster than the last time I tried it.

Despite giving it my all, my weighted average power increased only from 120w to 127w and I peaked at 36km/h rather than 35.3km/h. Figures that are hardly going to propel me up the Alps any noticeably quicker or easier!

Further analysis shows that I had more power on the short sharp bursts (anaerobic power), on my maximal aerobic power and on my functional threshold power. I can only imagine that this must be a good thing!

My neuromuscular power however has dropped a little. My immediate thought was this was perhaps not surprising, given that I’m training with a degenerative neurological condition. The power of the mind to create a story that is not based on anything factual! My detailed report suggests that I simply wasn’t paying enough attention and mis-timed my bursts of power!

I breathed a short sigh of relief before realising my report essentially said ‘needs to pay more attention and must try harder’.

Image Source: Cyclinglocations.com

No excuses, I know I have a proverbial mountain to climb as well as 24 actual mountains!

Guest Blog

What cycling has taught me about Parkinson’s Disease

By Paul Jones

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

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

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

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

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

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

I’m not planning to stop any time soon.

From the Heart

Yesterday, I received a message from Ewan who is training hard for the Raid Alpine challenge. Despite being hundreds of miles from the other Cyclopaths and therefore having to do much of his training alone and with the added challenge of the harsh winter weather on the east coast of Scotland, his enthusiasm and enjoyment of cycling warmed my heart.

From Ewan:

I’m trying to remember but I think 🤔 today was only my 5th or 6th ever ride over 50 miles (just slightly over 50 I hear you say!! 🙈😉😆) and definitely my first 💯 + miles week!! 👍🏻🎉 This cycling lark is definitely getting obsessive! 🤓


To be honest, I think it’s also very good mentally; it slows me down from the daily dashing around running the business; gives me space to think about all sort of random yet important stuff that I might not otherwise have allowed time for; gives me space and pace to enjoy the local environs; makes me appreciate how lucky I am to be where I am in life; and the feeling of ‘satisfaction’ tiredness at the end certainly enhances that overall feeling of positive well being.


Thank you again for getting me involved, I’m sooooo enjoying the journey 👍🏻😊🚴🏻‍♀🚴🏻‍♂🚴🏻‍♂🚴🏻‍♂

Thank you, Ewan, we are sooooooo enjoying having you in the team

I loved your message, and am delighted that you too have discovered the many joys of cycling.

We’ve got Wind!

According to the Met Office, the following descriptions of wind apply. The Met Office does’t mention cycling in these winds, so for the cyclists amongst you, here are a few extra pieces of information.

Light Air (1-5km/hr)

Not a problem for cyclists. We generate more air by talking on the flat and deep breathing when going up those hills.

Light Wind (6-11km/hr)

Refreshing, keeps us cyclists cool and fresh.

Gentle Breeze (12-19km/hr)

Cyclists may not describe this as ‘gentle’ when meeting it head on but we are unlikely to be blown off our bikes by it.

Fresh Wind (29-38km/hr)

‘Fresh’ conjures up nice images, such as ‘fresh as a daisy’, ‘freshly laundered clothes’. The word ‘fresh’ did not enter my mind once when battling up and down hills just to stay upright in a ‘fresh wind’! The words ‘frightening’, ‘ferocious’ and ‘fearsome’ seem more appropriate and I’m sure the ‘f’ word escaped under my breath a few times during Saturday’s cycle, battling a ‘fresh’ wind. High risk of getting blown into ditches, other cyclists or cars. Remind me never to venture out in a ‘fresh’ wind ever again!

The Met Office descriptions go on: Strong Wind (38-49km/hr) etc…… but I read no further. For me, cycling stops at anything more than a gentle breeze by Met Office standards!

Image Source: Winnie the Pooh

Against the Wind

The plan:

  • Early start
  • Lots of kilometres (90)
  • Lots of hills (1,000m+)
  • A brief coffee stop
  • Fast(ish)!
  • Back by 2pm

The Weather Forecast:

  • 7-10 degrees (‘Toastie”)!
  • A ‘fresh breeze’

The Reality:

  1. Early start
  2. Lots of kilometres (76) – many of them slow due to head on wind
  3. Lots of hills – 1,166m of them with segments of up to 20%
  4. For ‘fresh breeze’ – read ‘overpowering gusts’, head on slowing us down, side on knocking us over, unpleasant at best, dangerous at worst
  5. Fast(ish) – No chance, thwarted by the wind
  6. Home by 2pm, another training ride completed