MND can get in the sea

The last post in this blog was the beginning of June, so it has been four months since we last updated you all.  I wrote the last post as David was feeling jaded about it, and unfortunately that hasn't changed.  I was also a bit ‘meh’ about it, but I have been watching Kevin Sinfield complete his final challenge and considered how he is still out there raising funds and awareness for the MND community and this is what we set out to do too when David was first diagnosed.  We have a large following and readers all over the globe and whilst we don’t owe it to anyone, we did always say we wanted to document this journey.  The consequence of leaving it this long though, is that this blog is going to feel long and probably quite gloomy.  I have started it off with an incident of me ‘dropping’ David on the floor this week, and unfortunately, it doesn’t really get much better after. The blog was once an outlet, but then David began to feel it had become repe...

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...

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...