Help!

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!

Unpredictable (I)

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)

A Link Between The ‘Shrinks’

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’

Time to Get Up

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 Can’t Wait…

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…

It’s Back!

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!

The ‘Shrinks’

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’

Time to Change…….

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…….

Strangely Delighted!

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!

A Social Dilemma

"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

Time for a Challenge

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

Credit Where Credit Is Due

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

3am and Counting…….

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…….

Back in the Saddle

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

Bemused & Confused!

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!

Testing, Testing…..

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…..

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… Continue reading Cider with Rosie

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… Continue reading Jumping to Conclusions

A Spring in My Step

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

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… Continue reading Now, Where Was I?

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… Continue reading The Magic Roundabout

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.… Continue reading Two Days

Alexa, Where Is My Car?

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?

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… Continue reading Shutters Down

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… Continue reading The Green Cross Code

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… Continue reading New Day, New Start…….

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… Continue reading CBA?

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… Continue reading Something in Common

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… Continue reading RSVP

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… Continue reading The Time Thief

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… Continue reading 03.30hrs

(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… Continue reading (Don’t) Blame It On Me……

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… Continue reading Speed Awareness?

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… Continue reading A Little Pizzuberance!

Top Ten Tips

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......

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,… Continue reading All in the Mind (Or not..)

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… Continue reading World Parkinson Congress 2022 Ambassador

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… Continue reading A Heart Warming 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… Continue reading A Few Hills Too Many

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… Continue reading A Sunday Cycle

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… Continue reading The Peculiarities of Pedalling with Parkinson’s

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… Continue reading With a Little Help From My Friends

Some Normality

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

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… Continue reading Lighthearted Learning from Lanzarote

Quote of the Week

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.

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… Continue reading Longest Day

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… Continue reading No 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… Continue reading Too Windy

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,… Continue reading My Big Sis

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… Continue reading Team Training

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… Continue reading Guest Blog

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… Continue reading Wading Through Treacle

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.… Continue reading In a Nutshell

The Original Cyclopaths

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

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… Continue reading Mountains to Climb

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… Continue reading Guest Blog

Against the Wind

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

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,… Continue reading Pedalling with Parkinson’s

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… Continue reading Sleepless Night!

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… Continue reading 2019 Statistics