MND can get in the sea

Now that Halloween and bonfire night has passed, is it okay to talk about Christmas yet?  You'll all be excited and relieved I'm sure, to hear that we've bought this year's Christmas jigsaw. As usual, it had to include Father Christmas, and it does. Unfortunately, due my rubbish hands, we've had to order a 500 piece instead of the usual 1000, but it will take us half the time right? Regarding my muscle wastage, I had my latest neurological appointment, but for whatever reason neither my consultant, or my MND nurse were available. So we saw another doctor and nurse. We mentioned that things are becoming harder at home and that we have applied for assistance through social services and they're going to discuss my care needs at their next MDT meeting to see what help I could get / need. We also told them about the feeding PEG infections I keep getting, so we are being referred back to the gastro department to discuss removing or re-siting it. He examined me for lim...

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...