Living with MSA- Andrew’s Story
Hi, my name is Andrew Jackson. I am 54 years old, and I was officially diagnosed with Multiple System Atrophy in August 2023, though I’ve been symptomatic since around 2022.
In April 2022, I completed a cycle from John o’ Groats to Land’s End in 10 days, covering just under 1,000 miles. My diagnosis put an end to my two-wheeled cycling adventures as I lost my balance due to the illness. However, I was fortunate that my local neurophysio was running a pilot scheme with a local cycling charity.
Cardiff Pedal Power is a local charity that believes cycling should be available to all. They provide everything from refurbished two-wheel bicycles to tricycles and wheelchair-adapted bicycles for anyone to rent.
I found that a recumbent trike worked best for me, and an electric version allowed me to cycle longer distances. In September 2023, I decided to take part in the Ride London Essex 100 event on an electric trike if I could manage it. Around Christmas that year, my eldest daughter and a very close friend decided they would do it with me.
After an amazing amount of planning by my wife and friends, we arrived at the start line at 7:15 in the morning. Since the onset of my disease, mornings have been difficult for me, but we started as planned. I found it very challenging to keep pace with my friend and daughter, even with the electric assist. As we exited London on the A12, I started to lose them in the distance. Around the 25-mile mark, I caught up with them and told my friend to help my daughter finish and leave me. They thought I was giving up, but I knew he could not help both of us. It was either me or my daughter that he could assist. At that point, I called upon all my cycling experience, got into my own head, and kept turning the pedals for the next 75 miles.
For me, cycling this distance and seeing the scenery with others around me is my happy place. For a little while, I forgot that I had this horrible disease. I was doing something normal, albeit in an adapted way, and I felt truly alive. At 85 miles, I stopped to phone my wife and find out where the others were. Luckily, they were just behind me, having stopped for food. I waited for them so we could finish together on Tower Bridge, where some of the rest of the team were waiting to celebrate.
I feel that cycling 100 miles is a huge achievement, but feeling normal for one day means so much more. I just wish I could explain that to the team that helped me achieve this!
Pictured donated by sportograf.com
Disclaimer: The views and opinions expressed in the member stories published on these pages are those of the authors and do not necessarily reflect the official policy or position of the MSA Trust.
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I am so proud of my husband. He is determined to live his best life with those he loves and I will do all I can to support him and enjoy. Much love to the MSA community. We are all in this together x
Very proud to have helped at all Andy
What an amazing achievement! Well done Andy!
Andy, thank you for sharing your story and being an inspiration for all! So proud of this and your attitude to life. Big love from the Madden clan
This is such a huge achievement Andy. Your positive mindset is a great inspiration for all of us.
This is a massive achievement – physically and mentally – just to get yourself to the start line. Keep smiling dude.
Andy, you (and Loz) are an inspiration to us and many others. A massive congratulations on completing this. Xxx
Same time again next year?
In all seriousness, it’s so important to keep talking, keep sharing, keep raising awareness about this condition. “Normal for a day” really sums it up because your whole life changes with MSA. Not all good, but not all bad either – I would never have signed up to 100 miles were it not for the situation we’re in! At least for that, I’m really grateful.
Xxx
Congratulations! You must inspire so many. My husband is 57 and he was also diagnosed in August, 2023. I wish I could do something to make him forget this disease for one day. I just bought him a recumbent bike. Stay strong and keep riding.
It is so hard for us to watch the ones we love become unable to do the things they used to do Rita. And to suffer with this horrid disease. I hope your hubbie has as much pleasure with his recumbent as Andy has. Much love