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
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
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
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
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
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
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
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
'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?
'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?
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
It doesn't feel right to consider my last few rides as training. They have been in beautiful sunshine, with great company, fabulous cake stops and some of the most stunning countryside. I can't think of anything I'd rather be doing. Getting faster and fitter is the added bonus! 1. To The Blue Zucchini in Tetbury… Continue reading A Little More Training….
24 Days A few days rest after The Raid Local and already we need a new challenge. A 'Covid Compliant' Alpine Adventure .......in 24 day's time. 777km Cycling 777km from Lake Geneva to Nice. 13,000 13,000 metres of climbing Six Cols Col du TelegraphieCol du GalibierCol de L'IseranCol d'IzoardCol du Cormet de RoselendCol de la… Continue reading And Counting……
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… Continue reading A Sunday Cycle
Having recovered from the Raid Local challenge, spent some time with my family, caught up with some of the things I had neglected whilst training and taken some time to reflect, it's time to put pen to paper and, of course, it's time to get back in the saddle again. But first, once again, a… Continue reading ABC
Doing the Raid Local challenge would never have been possible without the support of so many people, so I'd like to say 'thank you' to everyone who trained with me, encouraged me, supported me for months while I prepared for the challenge, supported me on the day, donated to The Cure Parkinson's Trust and to… Continue reading A Team Effort
The challenge, in reality, was not nearly as easy as I had dreamt it might be! (See Previous Blog) In reality, it took me a lot longer, it was a lot harder, my average power output was a lot lower and I didn't see Rowan Atkinson at all! My stats came in four parts: Until… Continue reading Not So Easy!
Having lived cycling, talked cycling, blogged cycling, thought about nothing but cycling for the past few months, I have now started dreaming cycling. If I believed my dreams, I would be cycling ahead of the rest of the team, they would be shouting 'Slow down! We can't keep up! When did you get so good… Continue reading Easy!
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… Continue reading The Peculiarities of Pedalling with Parkinson’s
My fourth 'first' for this week was to cycle Sudeley Hill today without stopping. As part of a hilly ride today, after Harp and Ham hills, I finally did it! At 2.5km long, with an average gradient of 8.4%, a maximum gradient of 18% and a total climb of 215m, it was a tough one.… Continue reading Fourth ‘First’
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… Continue reading With a Little Help From My Friends
For all sorts of reasons, we haven't cycled together since Lanzarote: Work commitmentsFamily commitmentsThe weatherThe CoronavirusEwan 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,… Continue reading Some Normality
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… Continue reading Lighthearted Learning from Lanzarote
I thought 'Bloody Hell - I'm going to have to wait for Alison again.......and there she was, right behind me!' Anonymous Either, I'm getting quicker or everyone else is getting slower.......sometimes I'm even at the front! Great to have the support of these fabulous guys.
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… Continue reading Longest Day
(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… Continue reading No Plan!
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… Continue reading Too Windy
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,… Continue reading My Big Sis
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… Continue reading Team Training
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… Continue reading Guest Blog
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… Continue reading Wading Through Treacle
With a dislike for indoor training, despite the threat of rain and a moderate breeze, the great outdoors won my vote. The weather forecast wasn't great but it painted a more optimistic picture than was the reality! Heavy rain, strong winds, debris on the roads, flooded roads, fields, cars...... Emergency tree felling to avert an… Continue reading Wild, Wet, Windy and Wintery
If you've followed The Cyclopaths before, you will know that we view the 'Road Closed' sign as a challenge, rather than a warning...... Naturally, news that our favourite, Cleeve Hill has been closed to traffic for three weeks, made us immediately think - how wonderful it would be cycle the hill without a steady stream… Continue reading Road Closed
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.… Continue reading In a Nutshell
I have cycled 1,000s of miles together with these wonderful people. Thank you to the original and very fabulous Vietnam to Cambodia Cyclopaths 2017. Caroline, Chris, Claire, Jim, John, Julia, Marianne, Matt, Mick, Paul, Paula, Roland, Ruth, Sheena & Steve
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… Continue reading Mountains to Climb
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… Continue reading Guest Blog
Yesterday, I received a message from Ewan who is training hard for the Raid Alpine challenge. Despite being hundreds of miles from the other Cyclopaths and therefore having to do much of his training alone and with the added challenge of the harsh winter weather on the east coast of Scotland, his enthusiasm and enjoyment… Continue reading From the Heart
In a bid to get up those mountains a little easier, I thought I’d lose a little weight. I’ve possibly overdone things a bit!
Another evidence based exercise with proven benefits for people with Parkinson's. https://videopress.com/v/MTa5dpGu?loop=true&posterUrl=https%3A%2F%2Ftheramblingsofacyclopathhome.files.wordpress.com%2F2019%2F08%2F14ea11ae-f6b3-4ee4-a394-f245660164e7_1_105_c.jpeg&preloadContent=metadata Great fun, great exercise, great people! Lessons from the former world boxing champion!
According to the Met Office, the following descriptions of wind apply. The Met Office does't mention cycling in these winds, so for the cyclists amongst you, here are a few extra pieces of information. Light Air (1-5km/hr) Not a problem for cyclists. We generate more air by talking on the flat and deep breathing when… Continue reading We’ve got Wind!
I'm often exhausted after a ride..... And I'm often exhausted during a ride........ But reassuringly, I'm not the only one!
The plan: Early startLots of kilometres (90)Lots of hills (1,000m+)A brief coffee stopFast(ish)!Back by 2pm The Weather Forecast: 7-10 degrees ('Toastie")!A 'fresh breeze' The Reality: Early startLots of kilometres (76) - many of them slow due to head on windLots of hills - 1,166m of them with segments of up to 20%For 'fresh breeze' -… Continue reading Against the Wind
The Raid Alpine Club Leaderboard has brought out my competitive side! Changing daily, in response to the distances cycled, elevation gained and speed of those of us training for The Raid Alpine challenge in June. I wanted to share a snapshot of The Cyclopaths holding 1st, 2nd, 3rd and 4th place, just in case it… Continue reading Feeling Competitive!
Cycling 86km with great company, lots of laughs, some wonderful sunshine (I'll not dwell on the gale force winds and cold temperatures of the way home), stunning views and I'm fitter and (a little) faster than ever before. https://videopress.com/v/D5TXZmeD?loop=true&preloadContent=metadata
We did our usual Sunday morning cycle on Saturday as the weather forecast was much more favourable! The Cyclists Jackie, Caroline, Al, Nigel, Roland & John Highlights Good company and the essential cake and coffee stop Beautiful countryside Amazing Wildlife We spent a few minutes watching Fallow Deer running across fields and at one point,… Continue reading Saturday’s ‘Sunday’ Cycle
A clear day when we left Cheltenham, by the time, we had cycled up Leckhampton Hill and out towards Winstone, the fog was setting in. It was lovely to meet up with John and Chris, two friends who we had cycled LEJOG with. LEJOG With Chris and John Under time pressure to get back, Roland… Continue reading Jolly Nice
In the medical world, amongst other things, NAD, means 'Nothing Abnormal Detected'. 'NAD' sums today up Beautifully: It was cold, wintery, foggy and wet out. NAD for January. Despite the weather, we cycled. NAD for The Cyclopaths. We cycled Ham Hill again. NAD, having cycled it three times this week already. We cycled 40km. NAD,… Continue reading NAD
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,… Continue reading Pedalling with Parkinson’s
Deciding which weather forecast to use when planning the timing of and routes for our cycle rides is an art form in itself. Cycling for three beautifully sunny hours during a 24 hour period where ice, freezing temperature, gusty winds and rain dominated the weather forecast is nothing short of a miracle! And yet, today… Continue reading Weather Forecasting
A late start for a fast, flat 40km. Too icy to head out this morning and certainly cold but beautiful sunset. Just a warm up for a longer, hillier ride tomorrow, with some Cyclopath friends.
Yesterday threw gale force winds, relentless driving rain and cold temperatures our way all day and all night. I couldn't imagine being able to get out and cycle today. However, in true British weather style, the winds had passed, the rain had stopped and with true British stoicism, Roland and I ventured out for a… Continue reading Calm After The Storm
I couldn't meet the Sunday cyclists as I wanted to play taxi service for my son, so I set off alone around midday, when others had done their cycle, had their coffee and were on the way home to relax. Doing the same route that I had done alone last week, I tried to go… Continue reading Another Solo Cycle
Cleeve hill boasts to be the highest point in Gloucestershire, indeed the highest of the Cotswold Hills. I was disappointed to learn after making the claim on several occasions, that from the highest point by road, there are a few hundred additional metres to climb to reach the actual highest point! Not manageable by road… Continue reading Over the Hill
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… Continue reading Sleepless Night!
As is becoming a regular for a Sunday morning, I cycle up Leckhampton Hill to meet the Sunday morning cyclists at Cowley. It's lovely for Al, Caroline, Jackie, Ric and Nigel to welcome us into their well established Sunday morning group where Al plans a different but invariably hilly route each week, with the essential… Continue reading Sunday Morning
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… Continue reading 2019 Statistics
No longer able to use Christmas as an excuse to put off training for The Raid Alpine challenge, I head out for my last ride of 2019 and a gentle re-introduction to my training following the festive period. It was cold but dry and great to have some new cycling companions (James and Jess) as… Continue reading Last Ride of 2019