‘Good Years’

Newly diagnosed with Parkinson’s, I recall a well meaning neurologist telling me that I might reasonably expect to have ‘5-10 good years’ ahead of me. He seemed very pleased to share this information with me and at the time I was pleased to receive it. He had, after all, said ‘years’ and not ‘months’. There are many conditions where months are all that are on offer. I remain to this day, ever grateful that Parkinson’s is not usually one of these. However, once my gratitude for ‘years’ and not ‘months’ had lost its initial sparkle, a sense of injustice that my ‘good years’ were to be over by the age of 56, prevailed.

Cycling in Vietnam 2017

Our understanding of the importance of regular exercise, in managing the progression of Parkinson’s, has evolved over the past decade. Despite this knowledge, it can still be difficult to remain motivated to exercise each day. Thankfully, cycling has brought out a sense of adventure in me that I hadn’t previously recognised and I have committed to and trained hard for a long distance cycle challenge each year for the past eight years. These challenges have provided the motivation for me to exercise more than I would otherwise do. They have taken place around the world, including Vietnam and Cambodia, from Land’s End to John O’Groats, from Lake Geneva, across the Alps to Nice, from Boston to Bar Harbour, 1,900km from my front door step to Barcelona, through Norway and thousands of miles of training in between. I have met so many wonderful people and had some of the most incredible experiences of my life through doing these challenges.

Celebrating the end of our 1,053 km cycle from Land’s End to John O’Groats 2018

As each new year begins, I find myself looking forward and planning for the year ahead. This year holds a particular significance for me as June 2025 marks ten years from the date of my diagnosis. It is an anniversary of sorts. One which I rarely acknowledge to others nor ever celebrate but an anniversary never-the-less. If I believed my neurologist’s prediction that I might have ‘5-10 good years’ left at the time of diagnosis, then logic would follow that I will reach the end of my ‘good’ years by mid June. I might be forgiven for surmising that it is all downhill from here.

Thankfully, I realised quite early on that ‘5-10 good years’ is an impossible prediction to make. The presentation, progression and pace of progression of Parkinson’s varies enormously from person to person. A diagnosis of Parkinson’s does not preclude another significant diagnosis or life event which may impact on quality of life and of course ‘good years’ are not solely dependant on physical symptoms but also on mental attitude and the ability to cope, adapt and react to such a diagnosis. The support of families and friends undoubtedly plays a large part in the quality of life experienced too.

When I look back over the last decade, it would be overly simplistic of me to describe these last ten years as simply being ‘good’. A more accurate assessment would be that these years have been some of the hardest I have experienced in terms of physical health and the psychological adaptation to living with a degenerative and progressive condition while simultaneously they have provided some of the most incredible and life affirming experiences that I would not have had, if I had not had a diagnosis of Parkinson’s.

Arriving in Barcelona, having cycled 1,900km from Cheltenham to attend the World Parkinson’s Congress 2023

Of course, I wouldn’t wish a diagnosis of Parkinson’s on anyone and I do not wish to diminish the struggles that those of us living with the condition face, particularly those at more advanced stages. Parkinson’s presents challenges physically, psychologically and emotionally and demands our energy and our time to simply get through each day. So, nearly a decade after diagnosis, I have a sense of gratitude that I am still able to do many of the things I enjoy. I am grateful that I found a love of cycling and am still, with ongoing training, able to cycle long distances. It is harder than it used to be but I’m ten years older with ten years of Parkinson’s progression to deal with. I’m always the slowest in any group but I love the camaraderie that comes from cycling with others and the sense of achievement when completing a challenge.

It is just possible that I have viewed my neurologist’s prediction of ‘5-10 good years’ as him throwing down the gauntlet and challenging me to prove him wrong. That will be the stubborn streak in me. This stubborn streak, along with many, many hours of training has served me well. As this year gets underway, I have no intention of letting it mark the end of my ‘good years’ but am determined for it to be the start of a renewed commitment to exercise and to make the most of every day. So, in May 2025, I will be setting off on my biggest challenge yet. To cycle 4,500 miles across America from the little town of Seaside, on the west coast to Boston on the east coast. I will be joined by my husband and our friends, Caroline and Paul who have done most of our cycle challenges with us.

We will be making our way, self supported, across America. Our flights are booked, our route is broadly defined and now undergoing detailed planning. Our new bikes (of course) have arrived, training is underway but there is so much more planning and preparation to do. I want to keep a record of this adventure and share the details with friends and family who have expressed an interest in following our journey. I will detail our planning, preparation and progress via this blog. My apologies in advance for those who are tired of stories about cycling. There are a few months ahead when it is unlikely that I will write about anything else! If 2025 is not likely to be a ‘good year’ then I’m damned sure, I’m going to do my best to make it a ‘great year’.