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 they lead.

It’s not about speed, it’s about repetition. After the Raid Local, I figured I must be in with a chance of being a ‘Local Legend’ on Cleeve Hill at least.

Not so. Apparently there are others who have cycled it more times than I have in the last 90 days, although I doubt anyone has done it more times in a single day! However, my disappointment was short lived, and my excitement rekindled when I discovered that I was the ‘Local Legend’ for Harp and Ham Hills combined and for 25 other segments.

Just as I was beginning to enjoy my ‘Local Legend’ status, I received a message from Strava that my title had been taken from me and I was no longer the ‘Local Legend’ for one of my awarded segments.

I feel I like an olympic champion who has just been stripped of a gold medal, although, clearly I need to get some perspective. I’m not sure the short-lived elation is enough to withstand the disappointment whenever one is taken away from me!

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, is not lost on me.

I had the usual excuses ready: ‘I put the wrong date in my diary’ / ‘Old age’ / ‘The menopause’ / ‘Too many things to do, too little time’ / ‘I got distracted’. These excuses are usually accompanied by a shake of my head, raised eyebrows and some reference to the fact that I never used to forget anything.

I could blame lockdown. Life became simple. I didn’t go anywhere, I didn’t meet anyone, I didn’t have any appointments to keep and so I got out of the habit of checking my diary. I foolishly thought I could ease back into some degree of socialising without needed to diarise everything. Apparently I was wrong!

Image Source: verywellmind.com

‘Bear with me, I fear I’m losing my marbles’, would have summed it up more honestly. The day before, I had spent three hours being assessed by the neuropsychology team at North Bristol NHS Trust after highlighting my cognitive defecits to my neurologist during a routine review. ‘Do you use strategies to help you remember things?’ he asked. ‘Oh, yes, absolutely’ I said ‘I have it down to a fine art. No-one else would really notice. I have lists everywhere for everything. I set reminders, sometimes multiple times for the same event. I’m great at it!’

Not so, it seems!

As the owner of a slightly wonky brain, it’s easy to worry that my cognitive decline is Parkinson’s related. So, imagine my delight to find it’s not just me who has these problems. If I express concern to friends, without fail their response is ‘me too!’ and so we share stories, laughing until our sides hurt, about our experiences of ageing, the menopause and times when our memories have failed us. I’m always reassured by these conversations, that slightly wonky brains appear to be the ‘new norm’.

Image Source: Simonlucasbridgesupplies.co.uk

That day however, by suppertime however, I found myself seeking further reassurance by trying to gauge how well I had performed in my assessment the previous day. I asked my family if they would answer the same questions. After much hilarity at my suggestion that I might be able to remember any of the questions, the family placated me and embraced a suppertime assessment. Reassuringly, they couldn’t answer many of the questions either.

So, I came to the conclusion that if my slightly wonky brain is causing me to lose my marbles, I will never be alone. I’ll be in the company of not only many of my friends but the majority of my family too!

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 last WPC in Kyoto last year.

Reflections from the WPC Kyoto 2019

Along with 2,600 people from 65 countries, I attended the 5th WPC in Kyoto last year. The WPC unites the global Parkinson community for a high-level, scientific, and educational program. Organised into four days of pre-congress courses, plenary sessions, workshops, and discussions, the WPC 2019 explored the most recent and cutting edge science and clinical research as well as advances in treatments designed to improve care and quality of life for people living with Parkinson’s.

The WPC’s mission is to ‘provide an international forum to learn about the latest scientific discoveries, medical practices, caregiver initiatives and advocacy work related to Parkinson’s disease. By bringing physicians, scientists, nurses, rehabilitation specialists, caregivers and people with Parkinson’s disease together, each Congress allows for a worldwide dialogue to help expedite the discovery of a cure and best treatment practices for this devastating disease.’

I found it hard initially to be surrounded by so many people with Parkinson’s, many at more advanced stages than myself. I very quickly realised though that I was part of an amazing community of people from all over the world who are truly inspirational. I met many people I had read about or corresponded with before and also many new people, some of whom I have enduring friendships with. The educational content of the meeting was phenomenal and I was pleased that I had spent many hours before the congress compiling my timetable of ‘must take part in’ sessions, presentations and workshops. There was so much to choose from and something for everyone.

The energy and enthusiasm created from this diverse group of people brought together by one common goal was incredible as we learned together, laughed together, shared insights, experiences and ideas. Witnessing first hand the commitment, expertise and energy that goes into finding better treatments and ultimately a cure for Parkinson’s was in itself uplifting. I knew well before the end of the congress, that I was part of something very special and I knew I wanted to become more involved in the next one.

Messages of Hope at the WPC Kyoto 2019

Coffee breaks and lunchtimes were another opportunity to meet people, to chat, to share our experiences, ideas and hopes. They were also an opportunity to try a range of experiences on offer including reiki and massage therapy. The renewal room provided individual areas where we could rest, relax and on occasion sleep as we needed throughout the day. The travel, the learning, the networking, the heat and of course Parkinson’s meant this was a much needed and valued facility for many of us. The organisers truly had thought of everything, except perhaps they might have underestimated the challenge for many of us of eating lunch with chopsticks!

I had looked forward to the congress but I had no idea that by the time I left, I would not only feel better educated, I would feel I had been involved in something very special and inspirational.

I had planned a couple of days before and after the congress so I had chance to see some of the sights, to sample the local cuisine, to travel to Osaka and Nara and, although I hadn’t imagined I would, I managed to spend a wonderful day cycling around Kyoto too!

For anyone with an interest in Parkinson’s if you can only attend one meeting, it is the World Parkinson Congress that will leave you better educated, better connected and better resourced whether you are living with Parkinson’s, caring for someone with Parkinson’s or whether your clinical practice or research is linked to Parkinson’s.

Plans are already well underway for the next WPC in Barcelona from 7th-10th June 2022 and I’m delighted to be playing a small part in it. For more information, please follow the links below get in touch should you wish to discuss anything.

World Parkinson Congress 2022

WPC 2022 on Facebook

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 it.

Jonny’s Tweet:

“Two years ago someone left a brand new road bike outside my house within a hand written message that said ‘Exercise is good for Parkinson’s.’ Many miles later I look back and will never forget that ultimate random act of the deepest kindness.”

You can find Jonny on twitter at: Jonny Acheson (@pdinfocus)

Thank you Jonny for sharing such a heartwarming 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.

In the grand scheme of things, with the impact of Coronoavirus on individuals and communities, I’m not really complaining. I’m just taking a moment to feel sorry for myself (and the others) before finally putting this challenge to bed and coming up with a ‘Plan B’.

‘Plan B’

“An action or set of actions for doing or achieving something that can be used if the preferred method fails”

If we can’t cycle the Alps, there are plenty of other roads available to us. We are currently exploring options…………

‘C’est la Vie’

“Situations of the type that happen in life and you cannot do anything about them”

We can’t control the quarantine regulations and therefore we have no control over having to cancel our Alps challenge. We do have control over how we react to it. As with most things in life, we pick ourselves up, dust ourselves down and make the most of the situation. Watch this space!

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 have to remember last week felt great and was just as hilly and another 20km further. Completely unpredictable!

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 (88km with 1011m Climb)

For the biggest slice of carrot cake ever!

2. To Chedworth Farm Shop (73km with 1033m Climb)

Possible the best ever Sunday morning ride. Most of the group, beautiful day, fast and fun!

3. To The Jolly Nice and The Lakes (87km with 904m Climb)

A fast ride out to The Jolly Nice to meet these lovely ladies for an early evening ride out to the Lakes and then a mindful cycle home in the evening sunshine along miles of quiet country lanes.