MND can get in the sea

Before I document the latest two weeks of my MND journey, I want to mention two brave warriors who sadly lost their fight last week.  Kyle, from Pontypridd, was just 14, the youngest person in Britain to be diagnosed with MND. He was diagnosed less than a year ago, and had lived in a hospital bed since January. He showed so much courage, smiling through it all, and playing Connect 4 on his bed with his brother. We have been following Kyle's story on the facebook page 'Kyle's MND story'. Sleep tight Kyle x Andy, an NHS doctor from Hampshire, lost his fight to this cruel disease just a day later.  He and his wife Milli, led a strong media campaign to not just raise awareness, but also to challenge the government to allocate funding to find a medical breakthrough in MND research. Their Facebook page is 'Milli and Andy's MND journey'. Thank you Andy and Milli for fighting for the MND community.  The last fortnight has followed the usual routine of hospital appoi...

I've had a fortnight of differing weeks, with a very busy first, followed by a much more sedate second. A trip to the pharmacist for my flu jab, a visit from a community nurse to check my feeding peg, my respiratory appointment at the hospital, a lovely day in London, a night of Halloween bingo, and dressing up as E.T. for trick and treat and parkrun, left me gasping for air in the last week of October.  After our last bingo evening was called off due to Teddy being in a fight, we finally made it to a Halloween themed bingo night. Sadly, we didn't win any prizes but we had lots of laughs and the buffet was delicious. I even got a pumpkin pasty. The first week of November was far more relaxed. In fact, apart from an appointment with the lymphoedema nurse at the doctor's surgery, I didn't leave the house from Monday to Friday. The trip up to the doctor surgery to see the lymphoedema nurse didn't quite go to plan. As I hadn't fully c...

Alice and I have had quite a hard fortnight, interspersed with some lovely moments too - that's life with motor neurone disease I suppose.  We are adapting to new challenges at home and the problems that come with them, but there has also been laughter and humour too. We've been on a 3 date tour visiting the faded seaside glamour of the autumnal south coast, taking in Bournemouth, Southsea, and Cowes, spent precious time with our family and friends, and have met two olympic gold medal winning athletes in the same fortnight! I thought that losing my ability to walk would be the worst thing in the world but actually, I have accepted and adapted very well to the wheelchair. What is far worse, is the loss of strength in my upper limbs.  My arms can't go higher than my shoulders, so scratching my head, putting on a jumper, or my glasses, is hard. Sadly, picking my nose is also very difficult! My hands can't cut or spread food, and my fingers cramp up around a cup, or while b...

Well, even by our standards we've had a crazy few weeks, with a fortnight of gigs, TV and radio appearances, a fall, another hospice visit, and of course, parkruns! It all started on a sunny autumnal Monday morning at Southampton common. One of BBC 's researchers had heard about our assisted running story on a podcast recently, and contacted Alice to ask if we would be interested in being featured on South Today, our regional news show. We are passionate about raising awareness of both Motor Neurone Disease and assisted running so we were thrilled.  They wanted to tie our story in with the Great South Run, as we are going to be the first assisted wheelchair runners to be part of a pacing team at this years upcoming event.  We met Lewis Coombes on the common, which was a bit surreal as we usually see him on the telly presenting the sport section. He and his cameraman were so nice, and we did an interview before they filmed us in action. There were lots of angles and...