Cider with Rosie

The third in a series of short blogs, sharing some insights into the trials and tribulations of driving with Parkinson’s.

I used to drive a 40-mile round trip to work. On the way, I’d drop my youngest son off at school first. We’d listen to the Chris Evans Breakfast Show, chatting and singing along to our favourite tunes. Once I had dropped him at school, I’d switch the radio for an upbeat playlist, turn up the volume and sing all the way to work. It was a beautiful route (same cannot be said of singing), on narrow, winding roads through stunning countryside. I would enjoy the scenery as I drove through the beautiful Slad Valley, the backdrop of Laurie Lee’s childhood memoirs in ‘Cider with Rosie’. The journey gave me some thinking time in which I would mentally prepare for the day ahead. On the way home, I’d relax and enjoying the drive and sometimes use the time to chat, handsfree, with family and friends.

Image Source: Country Life

Six months into my job, I recall thinking how strange that these familiar roads should begin to feel more difficult to navigate. I found I needed to concentrate harder and consequently, the drive was less relaxing and less enjoyable than it had originally been. Navigating the twists and turns of the country roads had started to demand more of my attention as did passing parked cars and negotiating oncoming traffic. Conversations with my son became stilted as I found it difficult to concentrate on our chat as well as concentrating on driving. I turned the volume of my music down and stopped singing along. I found I was unable to enjoy the view and concentrate on the road ahead, so I became oblivious to the scenery. I started to arrive at work tired from the mental challenge of the drive and in no way mentally prepared for work. On the way home, the drive was no longer relaxing and I gradually stopped making those phone calls. I remember feeling that something had changed but couldn’t understand what or why.

There are so many initially subtle and seemingly disparate changes with Parkinson’s that it can take some time to join the pieces together. It was 18 months later that I was diagnosed and would be another 18 months before I would begin to make the connection between these experiences and the mild cognitive impairment that is common in the early stages of Parkinson’s which includes:

  • Difficulty concentrating
  • Difficulty multi tasking
  • Impaired visuospatial awareness
  • Slowed thinking
  • Delayed reaction time

Recognising that all of these can impair the ability to drive safely, the DVLA require those of us living with Parkinson’s to reapply to renew our driving licences every three years but that’s another story……..

PS Mum, don’t worry, it’s the perfect excuse to take the train 😜!

Jumping to Conclusions

For a long time, I have found it a challenge to get my keys out of a bag or pocket, fit the key into the lock and turn the key to lock or unlock a door.

Imagine my dismay, earlier this week, to have eventually got the key in the front door lock only to find I was unable to turn it far enough to open the door. I tried and tried, left handed, right handed, both hands. I knocked the door several times but no-one replied. Fairly typical for my teenage son, rarely seen without headphones, not to hear someone knocking at the door. Not one to give in easily, I tried for a whole, long ten minutes before admitting defeat. A whole deluge of negative thoughts filled my mind during this time about the implications of this deterioration in my dexterity.

Despondent, I sat on the doorstep and to get around the headphone issue, I phoned my son to ask him to let me in. He was at the park with the dog. Having left the house unoccupied, he had set the alarm and locked the mortice lock on the front door. So rare it has become during lockdown that I arrive home to an empty house, I hadn’t even considered that this might be the case. A few minutes later, after unlocking the mortice lock first, I unlocked the Yale lock and opened the door. Nothing to do with my dexterity or lack of it at all!

Let that be a lesson to me: 1) Not to blame Parkinson’s for everything 2) Not to overlook the obvious 3) Not to assume the worst 4) To keep some perspective.

Thank goodness my son had reminded me of the code to unlock the alarm, as I’m not sure I would have remembered it after so long but in an effort to learn my lessons from today, I’m going to put that down to my age and not worry about that either!

Images Source: Clip Art Library

Now, Where Was I?

Visual-Spatial Awareness

The ability to comprehend and conceptualise visual representations and spatial relationships in learning and performing a task.

I mentioned visual-spatial skills in a recent blog and the fact that these skills can be impaired in people with Parkinson’s. This started me thinking about how (and just how often) we use our visual-spatial skills and the many scenarios where any impairment may lead to problems. Quick thinking at times, it didn’t take me long to produce a long list of examples from my recent experiences.

Parking the Car

I find it increasingly difficult to park the car accurately, especially if I have to reverse into a space. This is despite 360 degree parking cameras, electronic sensors, and park assist, which seem to add nothing but sensory overload. Relieved to have parked, I not infrequently get out of the car to find it so badly parked I have to get back in to have another attempt.

Stationary Objects

Not in the car, I hasten to add, but when walking around, I frequently bump into stationery objects. It is easily done. It happens to us all but I suspect I have more bruises from bumping into door frames, tables and other furniture than most.

Self Assembly Furniture

‘No problem’, I thought recently when I took delivery of a not quite fully assembled wardrobe. Over the years I’ve successfully assembled my share of ready packed furniture. Not so! The assembly instructions consisted of only five simple steps but I could not translate the 2-dimensional pictures on the paper to the 3-dimensional pieces of furniture in the room. After a frustrating couple of hours, having made absolutely no progress, I had to delegate the job and anyone who know me well, knows that I hate to admit defeat.

Mirror Image

When training with my personal trainer, I cannot replicate the simplest of moves if we face each other. I have to turn round and face the same direction as him in order to copy any movements.

Crossing The Road

See previous blog, ‘The Green Cross Code Man’

Navigating Familiar Roads

Beyond useless, is my only assessment of my navigating around town on foot, bike or car. I know where I am and where I want to get to (always a good start) but cannot work out a picture of the route in my head. Last week, I took 25 minutes to walk (a very indirect route) from home to a park 10 minutes away. I just couldn’t picture the direct route I needed to take.

Navigating Unfamiliar Roads

When cycling from Land’s End to John O’groats, I cycled in ever decreasing circles for an extra eight miles around Tiverton town centre, looking for the elusive canal path leading out of town. Miraculously, I made the additional 800 miles to John O’Groats but only with the help of 21 fellow cyclists who daren’t let me out of their sight after that!

Negotiating Bends

I think a visual-spatial impairment might explain the difficulty I have keeping my balance when turning right on my bike. Left hand turns for some reason are no problem. Can’t explain that one.

Navigating Roundabouts

See previous blog ‘The Magic Roundabout’

Walking Downstairs

Apparently a common cause of falls in people with impaired depth perception, an element of visual-spatial skills. I’ve never fallen but notice I need to hang on to a rail and get my balance before heading downstairs recently.

Catching a Ball

Suffice to say, I’m never going to make it on to the cricket team!

Map Reading

Hands up – I’ve never been any good at map reading but cannot now, for the life of me, reconcile what is on paper with where I am and where I want to be. Thank goodness for SatNavs and Google Street Maps which give clear, verbal, step by step, instructions.

I hope this gives an interesting insight into another aspect of living with Parkinson’s that is largely unseen by others.

PS Mum, don’t worry. Like SatNavs and Google Street Maps, there’s a work around for almost every scenario and where I’m still searching for one, in the meantime, there’s always chocolate……

Images Source: ClipArt Library

The Magic Roundabout

The second in a series of short blogs sharing some insights into the trials and tribulations of driving with Parkinson’s.

Back in the ’70’s I remember watching the Magic Roundabout, a children’s television show featuring (L-R) Ermintrude, Florence, Brian, Dougal, Zebedee and Dylan. The opening scene showed various characters on the Magic Roundabout, going round and round in circles.

The Magic Roundabout Theme Tune
Little did I know at the time, that some 45 year's later, my driving would remind me of this much loved children’s television show. Just like the characters in the opening scene, I'm on a roundabout (albeit without the thrill of magic or signature music) and go round and round in circles. This is never what I intend to do. However, sometimes, when driving, I approach a roundabout and no matter how familiar it may be or how many times I have used it before, I have a complete mental blank and struggle to recall which roundabout I am on and which exit I need to take. Thankfully, this useful piece of information has never eluded me completely and during one of my 360 degree laps, I inevitably recall where I am supposed to exit. That said, I have been known to complete three laps of the roundabout and still get off on the wrong exit! 

It appears that the well documented impairment of visual-spatial skills, common in Parkinson's, is the most likely cause of for my 'Magic Roundabout' experiences. Visual-spatial skills help you create a mental picture of your surroundings and tell you where you are in relation to other objects. These skills enable you to give directions, judge the distance between your car and the one in front of you, and find your way home after a walk around the neighbourhood. It might also explain my reputation when cycling for being the one in the group who can get lost absolutely anywhere, even with a map. 

PS Mum. You only need worry when I start behaving like Ermintrude. x
Image Source: Giphy.com

Two days

The first in a series of short blogs sharing some insights into the trials and tribulations of driving with Parkinson’s.

Image Source: ClipArt Library

Back in the Day

I’m driving down a narrow, single track country lane with occasional passing places when I meet another car coming from the opposite direction. My friendly self smiles. I signal to my fellow driver that I will reverse to let them pass. My friendly self reverses smoothly, accurately and without hesitation around the slight bend to the passing place a few yards behind me. I smile and wave graciously at my fellow driver as they drive past and signal their thanks to me. A perfectly pleasant and courteous exchange.

Yesterday

I’m driving down a narrow, single track country lane with occasional passing places when I meet another car coming from the opposite direction. My friendly self attempts a smile but my facial muscles have a mind of their own and my ‘smile’ could very easily be mistaken for a scowl. I signal to my fellow driver that I will reverse to let them pass but my hand also has a will of its own and my signal could be interpreted in any number of different ways. My fellow driver can’t tell that I am my friendly self because they’ve interpreted my smile as a scowl and my hand gesture as a ‘why can’t you be the one to reverse’? My fellow driver has already made a judgement about me that in no way accurately reflects my friendly self. My ability to reverse swiftly, confidently and accurately is somewhat impaired by my Parkinson’s. I can do swift or accurate but am not confident that I can pull the two off at the same time. I feel slightly anxious about being watched while I reverse around the bend and even this hint of anxiety makes makes my symptoms worse. So……..

I put the car into reverse at the third attempt and as predicted, my slightly wonky brain struggles to reverse with any accuracy around the slight bend. It takes me a few painfully slow and awkward attempts by which time my fellow driver is gesticulating aggressively at me. My face is now well and truly frozen, I could be mistaken for being belligerent or angry but in truth I am mortified. To add to my stress levels, there are now cars waiting behind me. These other drivers sit patiently but I feel under pressure from them just being there. I do eventually manage to reverse successfully but at snail’s pace. My fellow driver honks their horn and shouts something loudly at me. ‘Thank you’, I thought they were saying, for a split second, before realising they were actually shouting ‘W*****’. My slightly wonky brain flipped into overdrive at this point, and before I knew it, my right hand that was usually slow to move and wobbly, moved faster than the speed of light to make a gesture which there can be no mistaking, was neither in the least bit pleasant nor the least bit courteous. It seems, I may no longer be my friendly self……..

Image Source: ClipArt Library

Or maybe, this scenario is nothing much to do with Parkinson’s and there are just some drivers who have no patience and are neither pleasant nor courteous.

Shutters Down

I’m learning that fatigue can be debilitating, in a way I never thought possible. Indeed, I confess that prior to experiencing Parkinson’s related fatigue, I was definitely in the ‘pull your socks up, stop moaning and just get on with it’ school of thought. I say this a little flippantly and I am more sympathetic than this makes me sound but a part of me failed to appreciate the significant impact that fatigue can have on day to day life.

That was until I experienced a fatigue that literally stops me in my tracks. One I fail to control and with the best will in the world, I would not be able to ‘pull my socks up, stop moaning and just get on with it’ if my life depended on it. It is not related to activity nor is it eased by rest. It is unpredictable and unstoppable. It is not just a feeling. Others can see it washing over me. My family refer to it as ‘when my shutters come down’. It can happen at any time.

Image Source: ClipArt Library

It is not like a lying in bed on a Sunday morning cocooned in a cosy duvet, enjoying the experience and not wanting to get up. It is not even like having cycled 100 miles and feeling so exhausted that as soon you arrive back home you wrap yourself up in that same duvet and sleep. Parkinson’s fatigue is like the duvet has turned to lead, it is heavy, cold and uncomfortable, painful almost. It weighs down on every part of your body and you can’t escape from it. Sleep is not an option as you are trapped and uncomfortable. There is no relief from it. I’d give anything to ‘pull my socks up, stop moaning and just get on with it’.

I’m not alone though. Fatigue is a major problem for about 50% of people with Parkinson’s and a third of people with Parkinson’s say it is their most disabling symptom. As with many things, it becomes the new normal, a part of you, a part of life and you find a way to live with it. It does mean however, that after much practice, I have perfected the ‘power nap’!

Anytime, Any Place, Anywhere……..

The Green Cross Code

Image Source: Typecast

As a child in the ‘70s, I remember being taught the Green Cross Code. It was a sequence of six simple but important steps to take to keep safe while crossing the road. I remember the Green Cross Code Man and I seem to recall being a member of the road safety ‘Tufty Club’ and proudly wearing the Tufty Club badge.

The Green Cross Code

All good and well. I can still recall each of these steps and as a one time, Tufty Club member, I can also recall Tufty’s Kerb Drill: 

‘Look right, look left, look right again, if all clear, quick march’

Image Source: Wikipaedia

Herein lies the problem though. I would still get a ‘well done’ from the Green Cross Code Man for remembering the six simple steps of the Green Cross Code but fifty years later, I’m not sure I would still qualify for my Tufty Club badge.

There are a number of symptoms of Parkinson’s that conspire to make crossing the road an altogether much more complicated sequence of events. Difficulty with spacial awareness, even in familiar environments, poor concentration and being very easily distracted are only some of the challenges. Add to this, a difficulty with the perception of speed and distance, along with thought processes and speed of movement that are both typically slower than normal and suddenly, Tufty’s Kerb Drill is very much more complex than it ever used to be.

My 1970’s Tufty’s Kerb Drill:

‘Look right, look left, look right again, if all clear, quick march’

My 2020’s Tufty’s Kerb Drill:

‘Look right, look left, look right again, all clear but I don’t move quickly enough. When my brain finally engages my legs to move, they too are in no rush but eventually start. It may only take a few seconds longer than it used to but a lot can happen in that time. So I check the road again. I look left again, look right again and look left again, where I see a number of cars travelling at different speeds and distances. Whilst trying to gauge how far away they are and how long it will be before they reach the stretch of the road I am trying to cross, I look right and see two more cars travelling towards me. Whilst trying to gauge how far away they are and how long I have before they reach the stretch of the road I am trying to cross, I forget how close the cars coming from my left are. I look left again and see a bus heading towards the stretch of road I am trying to cross. At the same time, I am distracted by a fellow commuter making polite conversation, the yells of a child in a pushchair and the siren of a passing police car. My slightly wonky brain struggles to cope with the sensory overload. I take a deep breath and relax. By this time, I have lost any perspective of how fast the vehicles from my right and my left are travelling and how far away they are likely to be now. So, I look right again. I see a large gap in the traffic a few cars back and I decide it’s probably safest to wait. Except, when the gap arrives, it doesn’t look like I have sufficient time to cross, so I wait. As it happens, I could have got myself and a small army to cross the road with plenty of time to spare during this gap but better this than being in danger. However, another few seconds have passed so back to the beginning………’Look left again, look right again’ and repeat…………

It might be another 50 years before I get across the road at this rate and if the Tufty Club still exists, I would like to think I might be rewarded with a medal rather than a badge in recognition of the effort involved!

PS Mum

Please don’t worry. I walked miles yesterday, crossing a number of roads and did so safely, so sleep well tonight. x

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 Coronavirus, 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

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

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 Few Hills Too Many

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

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!

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!

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’

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.

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

Pedalling with Parkinson’s

Parkinson’s is a progressive, degenerative disease for which there is currently no cure. Symptoms will get worse over time and the rate of progression will vary significantly from person to person.

Amongst many other symptoms, Parkinson’s affects balance and coordination, it causes dizziness, muscle cramps, dystonia, rigidity, stiffness, pain, slow movement, tremor, problems with sleep, fatigue and posture. Symptoms I am all too familiar with. Add to this, slowed reaction times, a 50% lower power output on my right side compared to my left and an asymmetrical riding posture and I might be forgiven for thinking that cycling and Parkinson’s are not particularly compatible!

BUT – exercise has been shown to slow down disease progression and for me that’s pretty compelling motivation for me to get on my bike and ride!

The evidence that cycling is beneficial for people with Parkinson’s is well established. Recent research is described in Dr Simon Stott’s ‘Science of Parkinson’s’ article The Exergaming of Parkinson’s.

Image Source: Stuartmcmillen.com

By the time I tackle The Raid Alpine Challenge, I will have been diagnosed with Parkinson’s for over 5 years. During this time I have cycled 1,000s of kilometres and become the fittest I have ever been. I cycle faster, further and hillier than I have ever done and am better than I ever imagined I might be at this stage of my Parkinson’s progression.

Others may have a different experience but for me, the Parkinson’s related challenges start when I’m preparing to go out on my bike – fiddly tasks such as attaching lights, my Garmin, saddlebag, doing up zips, helmet, shoes, and putting on gloves take longer than they used to and can be frustratingly difficult at times. Checking tyre pressure is a hit and miss exercise. On a good day, it’s OK, on a not so good day by the time I’ve attached the pump to the valve, I have no pressure left in the tyres at all. So, I pump the tyre up, only to lose all the air when trying to disconnect the pump! And repeat……

There is an etiquette to group cycling. Read Road Cycling UK’s Essential Guide to Hand Signals and Calls to learn more about this. Parkinson’s makes me a less reliable group cyclist than I would like to be. There are a few reasons for this:

  1. Take my left hand off my handlebars and my right alone cannot control my bike. Signals involving my left hand are unlikely to give the desired outcome.
Image Source: Clipartart.com

2. Parkinson’s makes it difficult to project my voice so my shouts are not always as loud as I would want them to be. Those behind or in-front may not always hear my warning shouts.

3. My balance is worse when I have a lot of moving things in my peripheral vision. If I don’t talk, or if I drop behind you, or ask you to give me some more space, it’s because I’m concentrating on staying upright, not because you’ve bored me!

4. My reaction time is slower than most. I’m likely to be in the pothole by the time I’ve seen it, let alone, seen it, avoided it, taken my hand off the handlebars and signalled and shouted to cyclists behind me.

Image Source: Bikeyface.com

I shall alert everyone to the risks of cycling behind me at the team safety briefing. Fortunately, cycling behind me is not something many of the group will experience as I’m one of the slower cyclists.

5. I adjust the timing, quantity and combination of my medications for long rides. So, I like to know how far we are likely to go, how fast and how hilly, when we plan to set off and when we are planning to take a break. Inevitably things change and I can adapt to this but I like to have a plan!

If I get the timing and dosage wrong, my speed, dexterity and even my thinking, reaction time, posture and balance can all be affected. Everything becomes a slog, like wading through treacle. The tiniest incline feels like a mountain as my legs lose power and my thinking becomes slow. I struggle to remember which gear lever moves my gears up or down, and it becomes difficult to remember my left from my right and I even have to think about how to brake. On top of all of this, I could quite literally fall asleep whilst cycling and can struggle to even keep my eyes open.

If this happens during The Raid Alpine challenge, where I need to cycle 800km, whilst climbing 19,000m over 6 days, I have a problem. As one of the slower cyclists, I am already worried there may not be enough hours in the day, even on a good day, for me to complete the distance and climb. Throw in a bad day and I may need a few extra days to complete the challenge!

6. My symptoms vary day to day. The only predictable thing is knowing I will have some combination of some of the symptoms for some or all of a ride. Symptoms can be influenced by the time of day, how well I’ve slept, stress levels, fatigue, what and when I’ve eaten, time of the month, illnesses (cold, flu etc), the weather….

In a nutshell, like everyone, I have good days and bad days, they may be a little more variable and more unpredictable than most but I have had a few years of experience in dealing with these and I believe, I have it down to a pretty fine art. Time will tell.

Sleepless Night!

Pleased with yesterday’s cycle, I started to think about how long it might take to to cycle the first day of The Raid Alpine challenge……..

Source: Marmot Tours

My Latest Stats

Distance: 55km

Ascent: 1,100m

Moving Time: 3 hours 30 mins moving @ average speed 15.4kmh

Duration: 4 hours 30 mins

Day 1 The Raid Alpine

Distance: 137km

Ascent: 3,700m

Est Moving Time: 10 hours 30 mins

Est Duration: 15 hours

Start: 7am, finish 10pm. I need to recover, refresh, eat, blog, sleep, prepare, repeat…..six days in a row

There are not enough hours in the day!!!!

And then I read that there are only 23.934 hours in a day!

Image Source: spaceplane.nasa.gov

And then I remember how exhausted I was after my most recent cycle!

Before panic sets in, I remind myself that the hills yesterday were extremely steep in parts, the roads wet, slippy, with potholes, debris and few passing places. This made even the downhill slow!

Fast forward 175 days and I’m hoping all of the following will make a difference:

  • A lighter bike
  • A lighter me
  • Better road surfaces
  • 175 days more training
  • Improved nutrition
  • Optimising timings of meds during long cycles
  • Beautiful scenery
  • A new experience
  • Plenty of pace setters
  • A positive mental attitude
  • Group support

There is no time to waste, I must get faster and fitter…………but first, some sleep!

Image Source: Clipart

2019 Statistics

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

My Strava Statistics for 2019

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

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

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

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

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

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

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

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