MND can get in the sea

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...

In the weeks since the last blog, we've been busy doing some really worthwhile and positive things, but unfortunately in the days in between, I have been feeling very sad, frustrated and annoyed with my situation.  We will start with a positive – I received the results of the biopsy I had taken of my nose.  I had a persistently bleeding area which looked suspicious of skin cancer, but the results came back as sun-damage only and since having the area removed, I have had no further problems.  This is a relief as it was liable to bleed at every knock and when other people are getting you dressed, they may not always remember to take particular care not to touch it with jumpers etc. Another positive came in the form of a parcel from John which contained a signed Derby County FC shirt!  As Alice took the photo of me holding it up, she noted I was already wearing a Derby top and scarf, so this really completed the look! So, although there is plenty of good, th...

I've had a fortnight of sleeping downstairs in my new bedroom now and it's going very well. Alice surprised me with some Derby County duvet covers and they're keeping me cosy.  It's certainly quiet. Alice's room is at the front of the house and when she asks me if I heard a car alarm going off, a cat scrap, a fox screeching, or an owl hooting in the woods opposite, I say that I didn't. My room is at the back and there is very little noise in the back gardens that overlook my new abode.  With my strength and mobility compromised, the profile bed is very helpful. I can use the handrails to turn over in bed to my preferred foetal position, and I can raise it to assist getting out of bed in the morning. The end of summer rain showers that we've had in Britain have been rattling on the flat roof, which is quite comforting when I'm tucked up in the warmth of my bed. Teddy hasn't slept on the bed with me yet, he just waits until I'm up - che...