MND can get in the sea

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...

Before I document the latest two weeks of my MND journey, I want to mention two brave warriors who sadly lost their fight last week.  Kyle, from Pontypridd, was just 14, the youngest person in Britain to be diagnosed with MND. He was diagnosed less than a year ago, and had lived in a hospital bed since January. He showed so much courage, smiling through it all, and playing Connect 4 on his bed with his brother. We have been following Kyle's story on the facebook page 'Kyle's MND story'. Sleep tight Kyle x Andy, an NHS doctor from Hampshire, lost his fight to this cruel disease just a day later.  He and his wife Milli, led a strong media campaign to not just raise awareness, but also to challenge the government to allocate funding to find a medical breakthrough in MND research. Their Facebook page is 'Milli and Andy's MND journey'. Thank you Andy and Milli for fighting for the MND community.  The last fortnight has followed the usual routine of hospital appoi...

Now that Halloween and bonfire night has passed, is it okay to talk about Christmas yet?  You'll all be excited and relieved I'm sure, to hear that we've bought this year's Christmas jigsaw. As usual, it had to include Father Christmas, and it does. Unfortunately, due my rubbish hands, we've had to order a 500 piece instead of the usual 1000, but it will take us half the time right? Regarding my muscle wastage, I had my latest neurological appointment, but for whatever reason neither my consultant, or my MND nurse were available. So we saw another doctor and nurse. We mentioned that things are becoming harder at home and that we have applied for assistance through social services and they're going to discuss my care needs at their next MDT meeting to see what help I could get / need. We also told them about the feeding PEG infections I keep getting, so we are being referred back to the gastro department to discuss removing or re-siting it. He examined me for lim...