03/03/2024 - 'What causes MND?' by David

Both of my neurological consultants that diagnosed me, mentioned a potential link between sporty people who push themselves to their limits and motor neurone disease. The idea is still being researched but if true, I would definitely fall in to that category. Anyone who has trained or played with me will testify that I always wanted to be the fastest, or fittest on the team, and I would always be out running on the roads, on my bike, or in the pool, during the off season, so I didn't lose any fitness.

If you look at the list of notable people who have been diagnosed with MND on Wikipedia, you will find a sprinkling of actors, singers, politicians and TV personalities, but the vast majority are sportsmen and women, predominantly rugby and football, (including Aussie rules, and American football). 

MND has already claimed the lives of well known rugby and football players like Scott Gale, Mike Gregory, Doddie Weir, Joost Van Der Westhuizen, Jimmy Johnstone, Don Revie, Willie Maddren, Papa Bouba Diop, and Lenny Johnrose. While Ed Slater, Rob Burrow, Stephen Darby, Marcus Stewart, and Jason Bowen, have all been diagnosed in the last few years. These names are all known because they were talented enough to play professionally, but how many thousands of grass roots players past and present, including me, have have lived with, or died from MND?

Rugby and football players are exposed to a number of factors that play a part in the development of MND like high levels of physical activity, repeated injuries, tackling, and head to head contact, but also, something that is not so well known. The exposure to harmful environmental toxins such as pesticides.

A distinctive feature of rugby and football players is the continuous contact with grass treated with organophosphates, a common pesticide. This links them to farmers, another population group which interestingly, has an increased risk for MND. Organophosphates work by damaging an enzyme in the body called acetylcholinesterase, which helps to break down the neurotransmitter acetylcholine, potentially resulting in neurological damage.

As a former researcher, and after my diagnosis, I am very interested to know more about the origins and complexities of MND.  Further studies will need to be undertaken before we can definitively say what does, or doesn't contribute to an MND diagnosis, but the papers that are already published, conclude that although there was a higher incidence of MND in people with high levels of physical activity, such as athletes, it was unlikely that physical activity itself was the only cause. The disease was more likely caused by a combination of a person’s genetic make up, a predisposition to be athletic and, as yet unknown environmental factors. 


Leap year day was moving day, and we boxed and packed our stuff for Alice's dad, his friend Dean, and Fin's dad Matthew to do all the lifting and moving. With my failing limbs, and Alice's bad back, we were very grateful for their help, and we got out just in time for the landlord to come and inspect how clean we had left it. We thought the cleaners had done a good job, but her comment on it's cleanliness was 'adequate'!

After 17 years of happy travels, I have decided to say goodbye to Zippy the 2CV. My friend and chief mechanic Adrian has got it ready for sale and I will advertise it soon. I will be sad to see it go as we've had some great times and journeys together all over the island, Southampton and the south coast, but although I can still drive at the moment, I know the time will come soon when I will have to hang up my car keys.

As the new house is still having work completed before we can move in, I took the opportunity to stay with my mum for a few days, and we spent lots of time watching TV, chatting, and eating together.  It's been challenging for Alice and I to be living out of suitcases this week, I couldn't get to my toothbrush or dressing gown, and Alice couldn't get to a towel!

We were blessed with the warmest weekend of the year so far, and we sat out on the balcony looking over the town below and the ferries and yachts out on the mouth of the Medina. We also took a walk into town, each with our walking sticks, slowly making our way to our favourite Italian cafe for coffee and a panini. Mum loved the company, and I felt relaxed. I just love the feeling of being on the island, with all the memories of my childhood, and the slow pace of life, and to sit on mum's balcony, looking out over the Solent, with boats bobbing about, and ferries coming and going, is just beautiful. 


I also had the opportunity of meeting up with some of my lovely friends on the island.  Don't ever get blasé and put off catching up with friends, you never know what is around the corner. 

We also went out to my dad's grave in a woodland cemetery, and his Mountain Ash tree is now over 6 feet tall and has lots of buds forming - spring has sprung! 

While I was relaxing and catching up with acquaintances, Alice was at Centerparcs on my daughter's non-stop hen weekend! Apart from the swimming, there was an Abba themed party, pottery painting, a meal out, a spa session and a film night.


They even had snow on the Saturday morning which made it very special. 


I am now up to 10mls of my trial medicine/placebo which is the maximum dose that they would like me to take. Still no side effects so I think I'm on the placebo arm of the trial, but who knows? My limbs are still weak and for the first time this week, I contemplated getting a seat and sitting down in the shower, so I think that by the time the downstairs wet room is completed at the new house, I will be ready to shower on a throne!

And here is the photographic evidence that I can still fold a packet of crisps into a triangle - I remembered how to do it, and it was all my own work too! 


Comments

  1. So Interesting regarding research. My uncle was a farmer....There are some great scientists working on this so hopefully we get some answers soon

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    Replies
    1. Thank you for reading. My consultant says they are making great strides in finding answers.

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  2. Mate. ( thats if you dont mind me calling you mate) You really are some sort of special human. On wards we go with you. Take care. Hope Alice has recovered from her
    exces!!!enjoyable party..

    ReplyDelete
  3. Great week and indeed interesting links to exposure to toxins in the ground. I hope that research brings more knowledge than questions. I too went to the IOW this weekend thinking as you said don’t put off seeing friends and family. Rachel’s hen party looked awesome. Love to you all as always x

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