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...

I have been strangely out of sorts for more than four weeks now. Less than the conflict in Iran, but longer than the day Dave Gilmore's black strat sold for $14.5 million and Kurt Cobain's Fender Mustang sold for $6.9 million at auction. Weirdly, I have no idea what is wrong with me. It started throaty, with blocked ears and a productive cough, so I told Alice I had catarrh. She just laughed at me saying that no-one calls it that anymore. Apparently the term catarrh is out of fashion these days.  Unfortunately, this all started on the week leading up to my 60th birthday weekend so I dosed myself up for a party on the Saturday and also for a two night break in London. Despite asking for no presents, I was inundated with birthday gifts so thank you to all my family and friends for the socks, t-shirts, chocolate, a lovely hand painted plate, tickets to a Van Gogh experience, the Mayflower theatre and cinema voucher, a Derby County shirt, a voucher for cocktails, a box of cakes, a ...

My three monthly respiratory appointment at the hospital recently went very well. I wore a saturation probe on my finger the night before and handed it in for analysis when we arrived. The respiratory physio Steph, and student physio Phoebe tested my sniff and cough strength and took a blood gas sample, all of which came back with good results. However, I had to tell the consultant Dr Jackson, that I have been waking in the night, having to catch my breath and that I sometimes wake with a headache. Alice also said that she can hear that I have sleep apnoea during the night. All of these things, and my constant yawning during the day, are typical symptoms of CO2 retention. As my respiratory muscles weaken, I can't fully fill or empty my lungs, which in turn lowers my oxygen saturation, and raises my heart rate. Dr Jackson said the results of the probe backed this up and although my breathing was not concerning at the moment, it might be an idea to have a think about trying non invas...