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
Snail Mail
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 Losing It Again!
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
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?
Easy Like Sunday Morning
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
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?
Challenge? What Challenge?
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?
Local Legends
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
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
The Final Nail in the Coffin
'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
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
Challenging Times 
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