MND can get in the sea

While rummaging through the possessions that I have accumulated over the years, I realised that I have very few photos from my childhood and into adulthood apart from school photos or holiday snaps. Neither of my parents were keen photographers, so the paucity of photos is understandable. Before digital photography was a thing, camera films had to be bought, then taken for processing either at a shop or sent off in the post. The family camera only came out for special occasions, and the thought of taking a photo of your food, or taking a camera into a nightclub in those days, would have been preposterous. Consequently, photos of my friends are few, as are photos of the things that were dear to me while growing up, like my first bike, Rich and I playing subbuteo, or the cowboy fort I got for Christmas. I don't even have a photo of my first car, which is a shame. Luckily I have photos of all my other cars, and the few photos of my friends are special reminders. There's nothing li...

We have been in our new house for 7 days now and we absolutely love it! All the rooms are bigger, it's nice and light all round, and it has a downstairs loo too! Alice's dad and his mate Dean, have nearly finished the work required, and we are starting to unpack our stuff and make it a home. One thing that we are particularly looking forward to, is to be able to put up posters and pictures on the walls, after being in rented accommodation and being scared of making holes in the walls for the last decade.   While clearing out the loft in our old house in readiness for our move, I came across ephemera that accumulates over the years. Photographs, football programmes, concert ticket stubs, scrapbooks, school reports, postcards and letters from grandparents, friends and old girlfriends, even my old diaries, going back to when I first started documenting my travels, and travails, my achievements and disappointments, and the important, heartwarming, sad or mundane ramblings, in 1980...

Within my role in NHS theatres I was extremely privileged to be part of many retrievals, where organs are harvested from patients that are in intensive care and on life support. After the family have been given the heartbreaking news that their loved one is not going to survive, consent for organ retrieval is received and specialist teams from all over the country make their way to the hospital and the organ recipients are contacted. As one family grieves, others are elated. These retrievals usually happen during the night when theatres and the road network is quiet, and once the family have had time to say goodbye, the patient is brought up to theatre. The procedure is challenging, technically and emotionally, and is carried out with the utmost respect for the donor and in accordance with the family's wishes.  Once removed, the organs are safely packed in cooled boxes and transported to various transplant hospitals. As one life is lost, others can recover and thrive. The reason I ...

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,...

After a fortnight of feeling a definite weakness in my legs following my final run, I have had to accept that the strength that I hoped might return, is not going to, and the progression of this illness is becoming real. I now can't walk for much more than 5 minutes without the help of someone's arm or my stick, and I have noticed that I need to sit down much more now.  As every stage of this debilitating condition invades my life, I have no other option but to accept it and embrace it. In doing so, I have given myself certain goals that I want to reach before I give in to that which I cannot stop.  I want to be able to walk to the shops, make myself a coffee and carry it out into the sunshine, and continue to walk a 5k parkrun, for one more summer. I also want to be able to climb the stairs, get myself in and out of a bath, and shave, cook and play my records into the autumn, and hopefully the winter. Any independance after that time, I will be grateful for. Of course, I know...

In a week where both Alice and I really wanted to rest and relax, we unfortunately did neither. Alice is suffering from a bad back, and I was still recovering from my running and musical escapades last weekend, so the thought of sorting, boxing, and transporting to the new house wasn't something to look forward to. With the help of family, including Fin, who used all his lego building experience to help assemble units and desks, we have made a good start though. Unfortunately, my leg strength has deteriorated and on Monday I walked back from the new house to our old house on my own as Alice and Fin were busy assembling furniture and after only a few minutes of walking, I felt unstable on my feet, and I was lifting my left foot in a strange manner as I walked. Admittedly, I didn’t have my stick, or my shopping trolley, or the hand of a good woman to hold onto to steady me, but it was very disappointing and left me in a low mood. Amidst all the emotions and household possessions arou...