MND can get in the sea

After a fortnight of feeling a definite weakness in my legs following my final run, I have had to accept that the strength that I hoped might return, is not going to, and the progression of this illness is becoming real. I now can't walk for much more than 5 minutes without the help of someone's arm or my stick, and I have noticed that I need to sit down much more now.  As every stage of this debilitating condition invades my life, I have no other option but to accept it and embrace it. In doing so, I have given myself certain goals that I want to reach before I give in to that which I cannot stop.  I want to be able to walk to the shops, make myself a coffee and carry it out into the sunshine, and continue to walk a 5k parkrun, for one more summer. I also want to be able to climb the stairs, get myself in and out of a bath, and shave, cook and play my records into the autumn, and hopefully the winter. Any independance after that time, I will be grateful for. Of course, I know

In a week where both Alice and I really wanted to rest and relax, we unfortunately did neither. Alice is suffering from a bad back, and I was still recovering from my running and musical escapades last weekend, so the thought of sorting, boxing, and transporting to the new house wasn't something to look forward to. With the help of family, including Fin, who used all his lego building experience to help assemble units and desks, we have made a good start though. Unfortunately, my leg strength has deteriorated and on Monday I walked back from the new house to our old house on my own as Alice and Fin were busy assembling furniture and after only a few minutes of walking, I felt unstable on my feet, and I was lifting my left foot in a strange manner as I walked. Admittedly, I didn’t have my stick, or my shopping trolley, or the hand of a good woman to hold onto to steady me, but it was very disappointing and left me in a low mood. Amidst all the emotions and household possessions arou

Strap in for a rollercoaster - it's been a big, emotional and busy week.  'Monday Monday... so good to me'. Well, not really. I'm doing the blog this week and that's because David just couldn't face it and needs a week off. I'm sure our regular readers usually feel reassured that despite his disease, he's upbeat and positive but this week, started with him feeling down (and that's OK!). So was there a trigger to this low mood? Probably yes. And that was our check up with his neurologist at the hospital. We get a 30 minute appointment and as usual, we were joined by Clare, the MND care co-ordinator for the area. The consultant starts with the same question he asks every time - 'what's changed?' and we have deteriorarion to report. David's hands are becoming weaker and every day tasks are becoming harder (if not impossible). Not only that, his arms are failing him so his overall strength is weakening. He had been packing up his percus

It's 12 months since my 'Theory Of Everything' moment. Anyone who has seen the film with Eddie Redmayne playing the part of Stephen Hawking, will remember the moment when he falls to the ground with a thud and his world changes forever. Unlike a 120 minute film, my story is thankfully told in real time and in the last year, I have come to terms with my condition and, in fact, embraced life ever since. It's impossible to determine the actual date of my first symptoms as Alice had noticed twitches in my legs, and I had been getting leg cramps for over a year, but my fall while out running last January, training for the Brighton marathon was definitely a turning point, and from that moment on, we both realised that another marathon was beyond my capabilities, and that I should get my body seen to by professionals. We both hoped it was leg related, but unfortunately, as the tests, went on, it was becoming obvious, that it was neurological, and I was diagnosed within months.