MND can get in the sea

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'm finding it harder to independently transfer from my power chair to either the toilet, or my recliner, as my arms and legs are becoming weaker, so we asked the Occupational Therapists to deliver a transfer aid for me to try. This will hopefully make transfers easier and safer, but it does need a second person to assist. The loss of autonomy is disappointing but inevitable. It's quite a bulky piece of equipment to store, so sadly I have had to say goodbye to my records and decks to make room. I bought my first record in 1973, aged 7, and continued to collect over the years until tapes, then CD's took over. Luckily, I kept all my vinyl, and when the surprising resurgence of record buying happened in the last few years, I was able to play them all again, and was able to add charity shop and online auction purchases to my collection. I logged all my vinyl on the Discogs app last year and found that I had collected 1,207 records, made up of 7...

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...

One of the activities that I can no longer do is wrap Christmas presents. I hadn't given it a thought as last year, my hands were still strong. I was having such trouble that I asked Alice to film me trying to wrap my mum's present, and it has so far had 3000 views online. With Alice's help, we got the presents wrapped, and I've scribbled on the cards with my feeble little mitts. The end result is not unlike a child's handwriting. It would have made comedy viewing on wrapping day as I had been taking in multiple deliveries over the month of Christmas presents and Alice had been stockpiling all the parcels in my bedroom. Unfortunately they contained some of her presents and I was unable to open any packages so we had to devise system whereby Alice would open a parcel and then hold it out to me with her head turned so as not to see anything. I'd then instruct her what size paper to cut, she'd put the paper up on my table all with her head t...