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!
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
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’
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
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
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?
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……
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!
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
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… Continue reading A Few Hills Too Many
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
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
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
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
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
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
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!
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