David Baker, a 58-year-old previously fit and well long-distance runner, is now suffering with Motor Neurone Disease, after having symptoms for four years.
In April 2020 he, like many others, contracted Covid and once recovered, noticed that he couldn’t run the distances that he previously could.
He had always been very active playing over 500 football games for Cowes, Northwood, and Osborne Coburg, many west wight triathlons, cycling time trials, marathons, ultra marathons, and nearly 200 parkruns.
2021: Started to feel leg aches and cramps
David, who is also a DJ and musician, grew up in Gurnard, went to Cowes High School, and has worked on the Island for nearly 40 years, but in 2021, he started to feel leg aches and cramps, which he had not suffered from before.
He says,
“I had blood tests and doctors appointments and was quite reasonably told that I probably had long Covid, which is a common complaint after contracting the virus.
“Over the next couple of years, I visited pain and long Covid clinics and I had physio sessions but continued to feel lethargic and the aches and cramps worsened.”
David’s wife, Alice, also noticed fasciculations, or twitches in his arms and legs and in January 2023 he fell for no reason while out running and was hospitalised with a cut to the face which needed stitches.
Diagnosed with MND in 2023
When in March, he noticed a slight foot drop while walking, he went back to his doctor, who after a few simple tests, sent him to a neurologist at Southampton General Hospital.
“I was given an MRI, nerve conduction and electromyography tests and was unfortunately diagnosed with Motor Neurone Disease in July last year.”
Baker: The hardest thing I have ever had to do
Motor Neurone Disease is a rapidly progressing terminal illness with an average life expectancy of between two and five years and Alice and David, both medical professionals, had to come to terms with this terrible diagnosis, and David says that telling his two daughters, and his family and friends was awful.
“It was the hardest thing I have ever had to do, telling people that loved me that I was not going to be around for the retirement that I had planned.”
Working through a bucket list
The couple, were determined to make the best of this situation and in the last ten months have made plans, and have started to enjoy everything on David’s bucket list of experiences that he would like to do.
“A cruise and train and coach trips, football games, concerts, and visits to museums, theatres and animal sanctuaries are on my list, and spending lots of time with my family is obviously a priority too.”
Fundraising campaign
Alice and David decided to start a Just Giving page to raise money for the Motor Neurone Disease Association and have organised a number of fundraising activities including DJ sets in Southampton and at Sounds And Grounds in Cowes and gigs with the band he plays in, Bobby I Can Fly, at Cowes FC, Heartbreakers in Southampton and Strings in Newport.
They also organised a walk along the Cowes to Gurnard seafront last November, the day after Alice and David renewed their wedding vows, and over 200 people joined them, wearing the orange and blue colours of the MNDA.
£10,000 raised so far
They have so far raised nearly £10,000 to fund clinical research and financial and physical support for David and the other 5,000 people in the UK, who have Motor Neurone Disease.
David says,
“There is currently no cure for this horrible disease. So if we can help in any way to find one, then we will.
“We have had really great support from the hospital and the community physio and therapy services, and our friends and family have also raised another £10,000 by walking, running, swimming, baking, gigging, and quizzing, and we are so grateful to all of them.
“My arms and legs are getting progressively weaker, but despite this, I recently walked my daughter Rachel down the aisle, which was just beautiful, and after our father and bride dance, I also had an emotional dance with my other daughter Anna, as sadly, I won’t be around if she ever marries.”
Baker: I am determined to make the most life while I can
David, who has recently retired on ill health, is enjoying everything he is able to do, but the progression of the disease will unfortunately mean that he will soon be in a wheelchair and lose the ability to swallow and to speak.
He said,
“I have banked my voice so that I will be able to communicate via an app, and Alice now pushes me around parkrun in a running buggy that was funded by kind donations.
“I am determined to make the most life while I can.”
Follow their journey
Alice and David write a blog called ‘MND Can Get In The Sea!’, which documents their MND journey, and it has so far had over 20,000 views worldwide!
Island record company Wight Records have also released a four track 10″ vinyl record and digital download of songs by Bobby I Can Fly with all proceeds going to the MNDA – available online.
Show your support
If you would like to support David and Alice’s fundraising campaign for MND, head over to their Just Giving page.
The local branch of the MNDA can be contacted at [email protected]
