The Ramblings of A Cyclopath
Today, my blog received its 10,000th view this year. Before I get carried away, I acknowledge that this falls quite short of the 5 million views required to officially become a viral TikTok sensation. A mere 4,990,000 views short to be precise. Oh, and it took me nine months to achieve this, rather than the… Continue reading It All Adds Up
I recently attended my local hospital for a test. Slightly anxious at the prospect and my medications not working their best, I sat in the waiting room, fidgety and shaky. I struck up a conversation with the only other person in the waiting room. Despite the noise of the television, the requirement to wear masks… Continue reading Jumping to Conclusions
Image Source: Bright/Kauffman/Crane I met a friend for coffee recently. Our conversation flowed easily, we were both relaxed in each other's company and we talked like 'old' friends. We shared a deep understanding of the many challenges we each face while living with Parkinson's before we had even started to speak. From a previous conversation,… Continue reading ‘Old’ Friends
Exercise, the only thing that has been shown to delay disease progression in Parkinson's, should, in theory, be easy to commit to doing on a daily basis. Yet at times it can still be difficult to find the motivation to exercise, particularly on a cold, wet, windy winter's day. In the autumn of 2019, signing… Continue reading Reflections of The Raid Alpine
Reflections - The Raid Alpine 2022 by Rory Chappell I was part of the support crew for a group of five cyclists as they took on The Raid Alpine. 770km long. Over 18,000m of climb. Geneva to Nice. I had never even heard of such a challenge, nor would I have thought it would be… Continue reading Rory’s Reflections
Time to say 'Thank You' to everyone who supported me to do the Raid Alpine challenge. A HUGE 'thank you' to John Anderson, John Wilkinson, Roland Valori and Claire Lehman for embracing this colossal challenge, all the training involved and for making it a wonderful adventure. To Callum Anderson and Rory Chapell, our fantastic support… Continue reading Thank You!
Feeling vaguely qualified to write about cycling with Parkinson's after the last ten days in the saddle, here are a few reflections of the impact of Parkinson's on cycling. Speed Slower than almost everyone I know. Maybe even without Parkinson's this would be the case but I believe it is mainly due to a combination… Continue reading Pedalling with Parkinson’s
Setting off in already blistering sunshine, our last day proved one of the hottest. Perhaps a little blasé about having 'only' 834m of climb to do, by the time I was 15km into the ride, already on the wrong road, still leaning heavily on my right hand side in a very lop sided fashion with… Continue reading Raid Alpine – Day 10
Distance 83km. Elevation 1700m. Our penultimate day saw us leave according to our speed. That was Claire and I setting off first for a ride that would take us 8 and 9 hours respectively. The others who are much quicker were rewarded by a slightly more leisurely breakfast and had still caught up with us… Continue reading Raid Alpine – Day 9
We expected today to be our toughest challenge for many reasons. Longest rideBiggest climbSearing heatExisting saddle sores, blisters, aches and painsFatigue from the previous seven days hard cycling To add another challenge to the day, was for our support team, Callum and Rory when an erratic / maniac driver tried to overtake the van they… Continue reading Raid Alpine – Day 8
Guillestre to Jausier. Distance 42km. Elevation 1154m. Our shortest day and we made the most of it. An early start saw the men powering up the hill by lunchtime whilst the girls took the same early start but a more leisurely approach. I'd like to say we did so from choice but my legs were… Continue reading Raid Alpine – Day 7
Col du Lautaret to Guillestre. Distance 81km. Elevation 1392m. What a fantastic day! Today we 'bagged' Col d'Izoard. 19.1km uphill during which we climbed 1173m. At a peak gradient of 11% and an overall average of 6%, it was tough. No nice pictures at the top as it simply resembled a building site. A huge… Continue reading The Raid Alpine – Day 6
Distance Elevation Gain By Rory Chappell (Support Team) ‘Switchbacks are overshadowed by persistence.’ An early start for the cyclists to get a handle on the day ahead: the biggest climb so far. After breakfast, they hit the tarmac and pedalled along to the town of Saint-Michel-de-Maurienne. They waited for a top up of water from… Continue reading Raid Alpine – Day 5
Bourg St ~Maurice to Lansleberg-Mont-Cenis Distance 83km, Elevation Gained 2,238m 'Over the Col and Far Away' By Rory Chappell (Support Team) The day started early high above Bourg Saint Maurice with a fantastic breakfast at our overnight stop, Montagn’Arcs. Joined by the fresh talent from Bolton, Neil and Jane, the cyclists set off up to… Continue reading Raid Alpine – Day 4
Day 4 - 'Only' I desperately wanted to get to the top of Col d'Iseran, our 'only' Col of the day. 'Only' 2,200m of climb over 'only' 47km, with temperatures peaking at 'only' 28 degrees, with absolutely no shade. At every km on each Col, there is a marker depicting the distance to the top… Continue reading The Raid Alpine
Day 3 - missing from our original blog series as exhaustion crept in and time ran out. For completeness, I've compiled this from a few scribbled notes to support my hazy memory, as Col after Col, the days seemed to morph into one. Today was to be our toughest so far. 75km, hilly from the… Continue reading Raid Alpine – Day 3
Cluses to Notre-Dame-de-Bellecombe. Distance 63km, Elevation Gained 2,200m. '20%' By Rory Chappell (Support Team) Waking up this morning to grey skies after a night of storms isn’t what you imagine when you come away to Southern France for a cycling challenge. That said, it is perfect climbing weather. Today was the first chance some got… Continue reading Raid Alpine – Day 2
First Time for Everything First Day Thonon les Bains to Cluses Distance: 81km Climb: 1913m First Team Gathering Lake Geneva First Climb Col de Moises First Celebratory Beer First Day Summary Hot, hot, hot, humid,, hilly, hellishly hard, hurting everywhere, happy it's over ....until tomorrow. Personal Perspective - Alison One of our 'lighter' days today,… Continue reading Raid Alpine – Day 1
Despite our varied modes of transport, the team arrived safely and managed a team brief over a few beers in preparation for the first day. Relief all round when the bikes arrived safely too. There had been much concern that despite securing the bikes (tagged) to the Campervan (tagged), they appeared to be travelling some… Continue reading No Bikes?
Here's hoping our initial efforts at organisation are not indicative of how well organised (or not) we are going to be throughout the trip. John W, already proving his organisational skills, arrived at the agreed time, at the agreed location with all the kit that he'd agreed to bring and most importantly with the Campervan.… Continue reading False Start
It was Helen Matthews, the Deputy CEO of Cure Parkinson's who introduced Claire and I in 2017. We have kept in contact since and met a few times. Helen, knowing that we both had Young Onset Parkinson's and both worked for the NHS, thought we may have a few things to talk about. We found… Continue reading The Raid Alpine
It had been a long day. It was early evening and I was rushing for a train to take me home from Sheffield where I had been presenting the 'patient perspective' at a conference for healthcare professionals working with people with Parkinson's. Balance, gait and visual-spacial awareness can all present problems for people with Parkinson's.… Continue reading !*?*@
Having recently watched 'Belfast' and then 'The Tourist', I was reminded of the time I met the actor Jamie Dornan, originally from '50 Shades of Grey' fame. If laughter is the best medicine, this one photograph has done much good for my health and that of many of my friends. Enjoy a laugh at my… Continue reading Shades of Grey
I grew up being told never to use the 'F' word. It was for this reason that I couldn't bring myself to watch Gordon Ramsay in Hell's Kitchen with his prolific use of the 'F' word. Over time, however, I've developed an affinity with the 'F' word. Not just THE 'F' word, lots of 'F'… Continue reading The ‘F’ Word
I remember Dale Winton hosting the game show 'Supermarket Sweep' in the '90s. Contestants had to run around a supermarket, collecting shopping items in a race against the clock. When the time was up, the contestant with the shopping trolley filled with items of the most value, was the winner. My local supermarket is averse… Continue reading Supermarket Sweep
I've been pretty damned good at following a comprehensive exercise programme since diagnosis nearly seven years ago. The suggestion and indeed the emerging evidence that I may be rewarded with a slower disease progression is a pretty good motivator. Despite this knowledge it can be soul destroying to spend each exercise session acutely aware that… Continue reading New Year, New Start
The challenge at a previous outpatient appointment was being asked to rate how I was feeling on a scale of 1 - 10. The challenge for my most recent appointment was to quantify what percentage of the time I was troubled by the symptoms I had just been asked to describe. Another trick question! Last… Continue reading Outpatient DisAppointment
Being cold and having Parkinson's is not a harmonious relationship. A couple of degrees below comfortably warm and my body reacts as though I was in the Antarctic. It displays a shivering that is completely out of my control. It is not particularly uncomfortable but it is obvious to me and to others. The fire… Continue reading Body Language
I've been here before (Don't Blame It On Me) and I should have known better....... My recently purchased MacBook Air was a treat to myself. As can rightly be expected of expensive Apple products, I assumed it would work faultlessly. Except, the keyboard seemed a little erratic and the trackpad had a will of its… Continue reading Deja Vu
Parkinson's - My Uninvited Companion Its a beautiful morning and I'm walking in the park enjoying the autumn sunshine and the stunning colours that this time of year brings. I stop and chat with people who over the past few years have become familiar and friendly faces. I have learned a little of their lives… Continue reading A Walk in the Park
When my mobile phone was new, a 100% battery charge would fairly reliably last two, sometimes three days. After a few years of regular use, I'm lucky if a full battery charge keeps my phone functioning reliably until lunchtime. Regularly running on red, I receive frequent messages offering the option of switching to 'Low Power… Continue reading Low Power Mode
When asked if I was interested in taking part in a short film about living with Parkinson's, to be shown on BBC Breakfast television, I didn't hesitate to say 'yes'. Perhaps unexpected for someone who is very self conscious of their Parkinson's symptoms. In case nerves set in and I needed reminded of my rationale… Continue reading BBC Breakfast
I've recently realised that my efforts to appear 'normal' are not reserved for symptoms of Parkinson's. Last week, BBC Breakfast were due to come and film a brief scene of our 'normal' suppertime at home to give some context to a short piece I had been asked to be involved in about the impact of… Continue reading A New ‘Normal’
Fine movements have been becoming more problematic of late. You would notice this if you observed me putting a jacket on or taking it off or trying to do up buttons or a zip. You would also notice this when I try to take my shoes on and off or attempt to tie my shoe… Continue reading Help!
Another weather forecast of 1-2% chance of rain every hour over the next 12 hours. Another solo cycle ride. Another soaking. Image Source: Drawception 1-2% Chance of Precipitation So, if I went out 100 times during similar forecasts, it should not rain on 98-99 of these occasions and it is likely to rain on one… Continue reading Unpredictable (III)
Having written about the unpredictable nature of Parkinson's only yesterday (Unpredictable I), it was reassuring today to be reminded that there are many other things in life that are unpredictable too. My Motivation I was determined to get up and go out cycling this morning, having spent some time the evening before planning a route.… Continue reading Unpredictable (II)
Last week, my boxing was as good as it ever has been since I started training four years ago. My personal trainer noticed immediately. I responded quickly to instructions and was full of energy, my movements were fluid and fast and it felt fantastic. Same time, same place, one week later, same personal trainer, same… Continue reading Unpredictable (I)
I recently read an interesting blog by Miriam Bram, a fellow Ambassador for the 6th World Parkinson Congress to be held in Barcelona in July 2023. The title, Shame & Stigma of Living with Parkinson's caught me off guard. Until recently, I hadn't consciously considered shame as something that might play a part in my… Continue reading A Link Between The ‘Shrinks’
Back in the Day 6am AlarmSnoozeAlarmJump out of bed and into showerShampoo and condition hairBrush teethBlow-dry hair Make upJewellery onFavourite dress on6.30am ready to face the day Time to Get Up Today 5.45am, no need for alarm, I'm awake! Snooze! I wish! Take meds Wait for meds to work Jump Crawl out of bed and… Continue reading Time to Get Up
During the current heatwave, many of us are feeling uncomfortably hot much of the time and that's certainly my experience over the last few days. Being of a certain age, like many other women, I also have the joys of hot flushes to contend with. I could blame the heatwave. I could blame the menopause.… Continue reading Sparkling!
I am driving down to Exeter today to pick one of my sons up from his student accommodation to bring him and his belongings home for the summer. It's forecast to be a scorching day, one of the hottest this year, of which I will spend at least five hours driving, an hour or so… Continue reading I Can’t Wait…
I've finally found my exercise mojo! Having lost it somewhere during the mid winter long lockdown, it's been elusive over the past few months but it's finally back. It has taken a few friends, a good helping of sunshine, some gentle encouragement, a cycle challenge and a dogged determination. It’s definitely harder to regain your… Continue reading It’s Back!
I remember reading Ronald Dahl’s story about The Twits, a hideous couple who catch the 'Dreaded Shrinks’ which causes their bodies to gradually shrink until there is nothing left of them except a pile of old clothes and a pair of shoes. I think I've got the 'Dreaded Shrinks'. Fortunately, I'm 5ft 11” tall, so… Continue reading The ‘Shrinks’
Five ferries, a few friends, fabulous weather, fantastic scenery, fun, fun, fun! Five Ferries Route What a stunning day to do the Five Ferries Challenge on the West Coast of Scotland. 118km cycled in beautiful sunshine from early morning until late into the evening. The most spectacular views. Fabulous company and another great challenge completed.… Continue reading Five Ferries Challenge
Six years ago today I was diagnosed with Parkinson's. It's not like a birthday or wedding anniversary to be celebrated with balloons and banners but it is an anniversary nevertheless. One that is imprinted on my being in indelible ink. I received a message yesterday from a friend, Paul, whose ninth anniversary was yesterday. He… Continue reading ‘Happy’ Anniversary?
At an out patient appointment recently, I was asked how I had been feeling on a scale of 1 - 10. 1 = As bad as it gets 10 = As good as it gets. I pondered. It had been 398 days since my last appointment. A lot of things have happened during this time.… Continue reading Time to Change…….
I feel strangely delighted today having read the results of my most recent cognitive assessment. The results identified some areas where my cognitive ability 'fell below the expected range'. Thank heavens! I'm not going mad, I haven't imagined it, there is actually a problem, a small one but none the less, a tangible, real problem.… Continue reading Strangely Delighted!
"Hi! How are you?” Almost without fail when meeting someone, our first exchange is “Hi! How are you?” By far the most common, and indeed the most socially acceptable response is “I’m fine, thanks. And you?” In fact, I would argue that this is the only socially acceptable response in this context. Herein lies my… Continue reading A Social Dilemma
The weather forecast looked awful for the entire day today. How easy it would have been to stay home, where it was guaranteed to be warm and dry. We could have been forgiven for curling up on the sofa with the Sunday papers for company and it was certainly tempting. However, then we would have… Continue reading What If……
As an ambassador for the World Parkinson Congress (WPC) in Barcelona in June 2022, I can get very enthusiastic about the fantastic experience that is the WPC. As a keen cyclist, I can get equally enthusiastic about all things cycling. And before I know it........ (WPC + Enthusiasm) + (Cycling + Enthusiasm) = Inevitable really,… Continue reading Time for a Challenge
Frequently and at some length, I bemoan the shortcomings of my slightly wonky brain and body. Enough! Credit where credit is due - some achievements they have each independently or jointly completed since lockdown first started a year ago. Understanding the challenge they face to simply chop vegetables, set up a chess board, use a… Continue reading Credit Where Credit Is Due
Cycle with Friends + Glorious Sunshine + Stunning Countryside + Cake & Coffee Break = Reignited Passion for Cycling. A beautiful, easy paced, slightly hilly (despite Caroline's assertions otherwise 😆 ) 40km route, a coffee and home made cake stop before the downhill route home. A perfect morning!
There are so many reasons why sleep can be a major problem for those of us living with Parkinson's. I can't remember a night in the past few years when I haven't been awake at 3am. Counting sheep doesn't help, so last night I tried counting the reasons why people with Parkinson's typically don't sleep… Continue reading 3am and Counting…….
Having successfully resisted all attempts to lure me onto the indoor turbo trainer over the winter months, as spring starts to bring a warmth that has been sorely missed, I don't need much persuading to get out on my bike in the great outdoors again. Tempted out on five of the past ten days, I… Continue reading Back in the Saddle
As you know, memory is a concern for me. Nothing wrong with my memory this morning I thought smugly as I remembered to apply the correct HRT patch at the correct time, on the correct day of the week. I am to apply one twice a week. For some reason, the process - one on,… Continue reading Bemused & Confused!
Had I doubted my slightly wonky brain and body's ability to execute an emergency stop when needed, I would have given up my driving licence without hesitation. By the very nature of an emergency stop, they were recently, unexpectedly put to the test. I found myself strangely proud of my slightly wonky brain's performance. I… Continue reading Testing, Testing…..
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… Continue reading Cider with Rosie
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… Continue reading Jumping to Conclusions
The rain has stopped. It is ten degrees warmer than it was a couple of weeks ago. The spring flowers are beginning to show their colours. The sun shines with a new warmth. The easing of lockdown restrictions is in sight. Cycling outdoors has regained its appeal. No more excuses, time to get fit again........… Continue reading A Spring in My Step
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… Continue reading Now, Where Was I?
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… Continue reading The Magic Roundabout
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.… Continue reading Two Days
I have recently started to use Amazon's Alexa device to compile my supermarket shopping lists. It has proved to be successful in ensuring I return home with at least 90% of the things I need. It probably goes without saying, that just because an item is on my list, that is no guarantee that it… Continue reading Alexa, Where Is My Car?
For a Christmas gift, I had ordered each of my three boys a personalised calendar for 2021. The calendar featured Willow, our dog. As everyone's favourite family member, I was certain this would be a hit. I carefully chose twelve of the best photographs I had of Willow and uploaded these to Photobox. Photobox had… Continue reading A Little Lockdown Laughter…..
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… Continue reading Shutters Down
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… Continue reading The Green Cross Code
In my efforts to get back into an exercise routine, I arranged to cycle with a friend earlier this week. I have cycled many, many times with this friend, including the 1053 miles route we rode from Land's End to John O'Groats a couple of years ago. We have cycled in every conceivable weather condition… Continue reading ‘Phone a Friend’
Views from Walks or Cycles Around Gloucestershire in 2020 I'm grateful that even during months of lockdown, we have always been able to exercise outdoors. I'm grateful we live in such a beautiful area where social distancing can require no effort at all. I'm grateful that, whatever the weather, we ventured outside and took the… Continue reading Social Distancing the Scenic Way
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… Continue reading New Day, New Start…….
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… Continue reading CBA?
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… Continue reading Something in Common
With cafes and pubs shut, sadly our usual refreshment stops during our cold, wet, winter cycles are no longer an option. There’s only one thing for it......!! There's a solution for every problem!
I was thinking recently about the many times over the past five years when I have told a friend or acquaintance that I have Parkinson's and the varied responses I have received. For the most part, I've had a huge amount of support, and compassionate responses when I tell anyone. I understand that it can… Continue reading RSVP
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… Continue reading The Time Thief
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… Continue reading 03.30hrs
'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… Continue reading (Don’t) Blame It On Me……
During my nursing career, I spent many years working as part of a cardiac rehabilitation team. My role involved exercising with people who were recovering from a heart attack or heart surgery. We would teach them to exercise safely and effectively. We exercised with them to help them gain the skills and confidence they needed… Continue reading Exercise Matters!
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… Continue reading Speed Awareness?
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… Continue reading A Little Pizzuberance!
A few months ago I was contacted by a young woman who had recently been diagnosed with Parkinson's. She was keen to meet and I was keen to support her in the way that I had been supported in those early, very difficult days. We arranged to meet in a local cafe. I remember doing… Continue reading Making an Entrance
Image Source: http://www.epclibrary.com My turn around time to respond to a text message, WhatsApp, voicemail or email, averages about six hours and has been known to stretch to 48 hours at times. I've not suddenly become antisocial, uncaring or any less interested in your messages but these days, I need to put some dedicated time… Continue reading Snail Mail
And just as quickly as I found my mojo (see previous blog), I appear to have temporarily lost it again! https://videopress.com/v/YPsU21lG?autoPlay=true&posterUrl=https%3A%2F%2Ftheramblingsofacyclopathhome.files.wordpress.com%2F2020%2F10%2F01b34ca2-e269-4f17-8452-db64a8e222c5_1_201_a.jpeg&preloadContent=metadata
I was beginning to lose the motivation to exercise every day. Exercise was beginning to feel like a chore, a daily hurdle to be overcome as quickly as possible. I was beginning to prioritise other things over exercise and to make excuses to escape the exercise sessions that least enticed me. Where exercise is concerned,… Continue reading Finding My Mojo!
'Acceptance doesn't mean resignation; it means understanding that something is what it is and that there's got to be a way through it.'Michael J Fox I read about people 'battling' and 'fighting' Parkinson's and I understand and respect the sentiment. The terminology alone, however, exhausts me. I don't wish to spend my days battling and fighting.… Continue reading Acceptance
In his role as Marty McFly, in the 1985 hit movie 'Back to the Future', Michael J. Fox travelled between the past and the future. Diagnosed with Parkinson's, in 1991, at the age of 29. I feel it is reasonable to assume therefore that he is something of an expert, on the past, the future… Continue reading Words of Wisdom
I find when talking with other people about our respective experiences of living with Parkinson's, we don't need lots of words or explanations, we have a connection, a bond, brought about by our shared experiences, a shared understanding and a shared uncertainty about our futures. We rarely struggle to find words to describe our experiences… Continue reading Strange
Prior to diagnosis, I started to notice that smiling had begun to require a lot of effort. Over time, this has become more and more noticeable. Smiling is no longer a spontaneous occurrence. There is a time lapse from my wanting to smile until my facial muscles respond. To compound matters, when my facial muscles… Continue reading Let’s Face It!
In a recent blog 'The Elephant in the Room', I commented on the fact that when we are out together, people often ask my husband how I am, rather than ask me. A very astute observation by my husband was that 'I don’t mind being asked about you, but I am not always sure I… Continue reading Who Knows?
Exercise is never an option for someone living with Parkinson's. It has been shown time and time again to ease a wide range of symptoms, improve mood and it is thought to slow progression of the disease down. It is the single biggest thing we can do to help ourselves. If a neurologist told me… Continue reading Easy Like Sunday Morning
'Before you judge a man, walk a mile in his shoes' For many years, a gentleman would walk past our house each day. He occasionally looked up but rarely smiled, waved or spoke. After a while I concluded, despite his relative young age, that he was a 'grumpy old man'. One day he stopped by… Continue reading Walk a Mile…….
I've been pondering......... Parkinson's can sometimes feel like the elephant in the room. Image Source: rawpixel.com Sometimes after meeting a friend, I realise that we have discussed life, the kids, the universe, my friend's health, the health of our respective ageing parents but not my health. I sometimes wonder if I don't make it easy… Continue reading The Elephant in the Room
I've learned that, understandably, many people can't imagine what living with Parkinson's is like, so this is my attempt at welcoming you to my world..... I've had to learn to create lists for everything (sometimes multiple lists for the same thing) and yet discover it is still possible to forget things! I've learned not to… Continue reading Lessons Learned
In the five years since my diagnosis of Parkinson's I have learned a number of new skills to help me manage an ever changing range of symptoms associated with the condition. These new skills include: Yoga To combat the stiffness, rigidity and reduced range of movements. Boxing To improve my balance, co-ordination, response time and… Continue reading What’s New?
Determined not to allow our hilly cycling to be thwarted by the cancellation of both our Alps challenge in June and our modified Alps challenge in August, we set off to conquer some UK based roads and hills instead. This week was... Not quite the Alpine challenge in terms of people. From the original group… Continue reading Challenge? What Challenge?
Cyclists love a bit of Strava and now there's a little bit more to love with the introduction of 'Local Legends'. 'Local Legends' are individuals who have cycled a stretch of road (segment) more times than any other Strava user in the previous 90 days. 'Local Legends' are awarded a golden crown for each segment… Continue reading Local Legends
I was asked recently if I could share my top ten tips for living well with Parkinson's. I remember reading a Top Ten list compiled by the late Tom Isaacs when I was first diagnosed and finding it really helpful. The experience of living with Parkinson's differs from person to person. This is my list......
Recently, for the second time in as many weeks, I forgot I had arranged (less than 72 hours earlier) to play bridge with friends. Learning bridge was my way of protecting my slightly wonky brain, in particular, my memory, from the ravishes of Parkinson's. The irony that it should be bridge games that I forget,… Continue reading All in the Mind (Or not..)
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… Continue reading World Parkinson Congress 2022 Ambassador
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… Continue reading A Heart Warming Story
'The Final Nail in the Coffin' "An event that causes the failure of something that had already started to fail" It was perhaps inevitable but after a full 12 months and 7,500km of training, 90,000m of hill climbing and being as ready as we've ever been, we've had to cancel our challenge in the Alps again.… Continue reading The Final Nail in the Coffin
Challenging Times 
