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
Tag: Parkinson’s
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
Cheers!
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!
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……
Exercise Matters!
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!
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!
Making an Entrance
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
Finding My Mojo!
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
'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
Words of Wisdom
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
Strange
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
Let’s Face It!
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!
Who Knows?
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?
Walk a Mile…….
'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…….
The Elephant in the Room
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
Lessons Learned
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
What’s New?
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?
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...... … Continue reading Top Ten Tips
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 2023 Ambassador
World Parkinson Congress (WPC) Ambassador - Barcelona 2023 I am thrilled to be chosen as one of the fifteen Ambassadors for the World Parkinson Congress in Barcelona in 2023. 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 2023 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 Little More Training….
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….
And Counting……
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……
Challenging Times 
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