MND can get in the sea

David has lost his writing mojo.  Every time I ask him about the blog, he just says he hasn’t felt like putting it together, but I know lots of you follow our journey, so I thought I’d take to the reins for this update to give David some time off. We have had a few big events happen in our lives recently – having carers start, our new powered transfer aid, the Leeds marathon and going on a cruise.  Let’s start with the carers.  This all started quite unexpectedly to be honest.  I had been trying to juggle caring for David while still working at the hospital and taking care of the house.  In order to do this, I was getting up early myself and then getting David up.  This involved transferring from bed to bathroom for morning care, dressing, transferring into the living room, doing food prep for the day and then setting up him with breakfast and everything he needed for the day before setting off to work at 10am for 6 hours.  After work was usually shopp...

Life for all of us, is a mixture of highs and lows, the ebb and flow of the tide, the crunchy and the smooth of the peanut butter, and living with Motor Neurone Disease is no different. In the last few weeks, I have been to two football matches, one gig, one gallery exhibition, been on the radio, had a cut throat shave, laughed with friends, scoffed a vegan roast dinner buffet, and enjoyed the cherry blossom and the spring sunshine. Photos incoming!! I've also had a disappointing neuro appointment, lost a fellow MND sufferer, had strangers look at my bottom every day, spoken to a dietician about a bowel regime, and done a poo in my pants.  Alice has had a respite night in a hotel, run 32k in training for the Leeds marathon, stretched and relaxed at yoga, also been on the radio, also had a disappointing neuro appointment, but as far as I know, hasn't also done a poo in her pants.  Our three monthly appointm...

Does anyone like January? Not many of us I'm guessing. I was certainly happy to see the back of it. I remember last year that my symptoms deteriorated remarkably just after Christmas and I feel as though the same has happened this year. Maybe it's the January blues, or the amount of rain we've had, or maybe it's just a coincidence, but it has hit me pretty hard I'm afraid.  Over the last few weeks I have noticed that my arm and finger strength has reduced and I now struggle to lift the duvet up to my pillow at night, or make a cup of coffee during the day. The things that I used to never think about like brushing my teeth or scratching my head are now monumental or impossible tasks. I have a back scratcher that Teddy and I share. I use it to reach an itch, and because I can't bend down and stroke Teddy any more, he likes a scratch under his chin - who doesn't?  My legs fare no better than my arms, and though I can still stand, I can't then lift my legs ...