MND can get in the sea

I've just send the blog to Alice for spell checking and grammar and I said to her that there isn't much about me and MND. I then tried to get up to go to the toilet and I dropped the TV remote, the electric fire remote, my phone, and my coffee cup, all in succession. I think that says more about me than a hundred word paragraph. Christmas and New Year bank holidays are perfect opportunities to get together with family and friends to celebrate, but the holiday season can also be a time for reflection. This January marks three years since what I like to call my 'Theory Of Everything' moment, when I fell while out training for the Brighton marathon. Just like Stephen Hawking's fall (played by Eddie Redmayne) in the dramatisation of his life with Motor Neurone Disease, I hit the ground so quickly that I didn't put my arms out to break my fall, and consequently broke my glasses, and suffered a bad cut above my right eye.  When I was diagnosed 6 months later after e...

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...