MND can get in the sea

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...

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 ...

I've just send the blog to Alice for spell checking and grammar and I said to her that there isn't much about me and MND. I then tried to get up to go to the toilet and I dropped the TV remote, the electric fire remote, my phone, and my coffee cup, all in succession. I think that says more about me than a hundred word paragraph. Christmas and New Year bank holidays are perfect opportunities to get together with family and friends to celebrate, but the holiday season can also be a time for reflection. This January marks three years since what I like to call my 'Theory Of Everything' moment, when I fell while out training for the Brighton marathon. Just like Stephen Hawking's fall (played by Eddie Redmayne) in the dramatisation of his life with Motor Neurone Disease, I hit the ground so quickly that I didn't put my arms out to break my fall, and consequently broke my glasses, and suffered a bad cut above my right eye.  When I was diagnosed 6 months later after e...