MND can get in the sea

When someone asks me how I'm feeling, I used to say that I was fine, like all Brits do, even though we are sometimes far from fine. These days, I just say that I'm okay, which I think, accurately represents how my life really is, nearly two years after my diagnosis. I'm not great, but I'm not terrible.  Abi, an Occupational Therapist, has visited, and we completed a 6 monthly questionnaire about my symptoms. She documented that I'm finding it harder to turn in bed, that my limbs are very weak, and that I can no longer walk unaided and only walk about 20 steps with help.  Filipa, a Neuro Rehab Dietitian also came, and we discussed my diet, my swallow, my bowel habits, and the impending PEG feeding tube that I'm having fitted next week.  Alice and I have good days and bad days, and we've lucky enough to have had more of the former, since our lives were irrevocably changed. Recently however, events have taken us to our lowest point.  A combination of the deteri...

Running the London marathon has always been an ambition of mine, but I was never successful in attempts via the ballot over the years. Then came my Motor Neurone Disease diagnosis, and I thought my chance to take part in the biggest and best marathon in the world had gone.  We then discovered assisted running with a specialist wheelchair, and after taking part in the Great Bristol, Great Scottish, and Southampton 10k's, Alice and I decided to apply for London. Unfortunately, we were unsuccessful in this year's assisted wheelchair ballot, so we booked a hotel, and had plans to be part of the MNDA cheer squad.  However, after Alice emailed the organisers detailing my story, and with assistance from the Whizz Kidz charity and Martin Davy from Delichon, the company that made our running wheelchair, on appeal, we were given a place and under beautiful spring sunshine, my dream came true. We travelled up on Friday and settled into our hotel. Having grown up on a sleepy island, I lov...

Our Team Baker running tops that I have designed, arrived ahead of next week's London marathon, and they look great! They are light blue, with dark blue and green waves, representing the sea, and have our names printed on the front, and 'TEAM BAKER Pushing Against MND' on the back. They also carry the logos of the organisations that have played a part in getting us to the start line, and of course '#mnd can get in the sea' with a QR code link to our blog. Crazily, they are made from 100% plastic bottles! 5 bottles per garment apparently. Our friend Martin, from Delichon has kindly paid for the shirts, and we are very grateful for all his continuing support.  Alice, Martin, our friend Andy, and my daughter Anna, have all completed their training, and are now tapering. If any marathon runners are reading this, you will know how good that feels. We all met up for the first time last week, and Martin brought our race buggy that he lends out for races.  It...