MND can get in the sea

Alice and I were delighted to attend and present the trophy at the annual DB Cup football game between members of the hospital team that I started over 10 years ago. The reds beat the blues 6-3, after being 4-0 up, before the blues brought it back to 4-3, only for the reds to seal it with 2 late goals. I presented the silverware to the winning captain João, who was playing his last game before moving away. The players raised over £500 for our JustGiving page, and we celebrated with an Indian meal out. It's been 2 years since I had to give up football and the line up has changed with players who have since joined who I don't know. Despite this, they all came over to shake my hand and thanked me for starting the group which was very kind of them.  Thank you Adel, Rich, Graham and all the other boys for organising.  I've had two hospital appointments since the last blog. The first was a biopsy under local anaesthetic, on a spot on my nose, that I've...

One of the things that I had always wanted to do throughout my life, was to walk the beautiful, scenic and rugged coastal path of the Isle of Wight. I remember many family walks after school or at weekends over the downs and forests, and usually to gather fruit or flowers for dad's awful home made wine. Gorse, quince, dandelion even!  I always fancied walking the 70 mile coastal route around the island and Alice and I had planned to walk it in our retirement, over a week, staying in hotels or B&B's on our way around, but unfortunately, my MND diagnosis scuppered that plan.  Prior to my diagnosis, Alice and I had completed many inland walks using the book that my parents had used, and we added our comments the to those that they had written twenty years previously. Some signposts and paths had changed over the years which made it more like orienteering at times, but it was a pub walking guide so they all ended well with a meal or a drink.  ...

Some weeks are better than others as Morrissey nearly sang, and heaven knows I'm happy right now.  Alice and I have had a good couple of weeks, spending a lot of time out of the house, enjoying this lovely weather we are having in the UK. We've gained two more parkrun course records, we've been on the radio, we've done another DJ set together, seen some cricket and we've even had a paddle in the sea! Around the house, I've been enjoying my new wetroom, and my profile bed has been delivered, and as Alice now has to shave and shower me, dry me, and get me dressed, then flush my peg, we've got into a nice daily routine. Once she's cleaned the floor of the wetroom with the skill of a swimming pool attendant, I'm ready to be taken upstairs by 8pm, which then leaves Alice to have some time to herself to complete her squaredle and candy crush games and catch up with TV shows.  Thankfully for Alice, we've been able to tick one task off her list of jobs, ...

I have had to finally give in to the cooking and washing up, as my hands are too weak to chop food or lift pans, and my mobility around the kitchen is pretty poor. I can sit down to do the washing up, but again, my hands are too weak to lift the crockery on the draining board, and so far, the things that have fallen to the floor haven't smashed, but I know it's going to happen, so unfortunately the cooking and cleaning up of the evening meal is now Alice's job. It's a shame, as I've always liked cooking. On leaving school with poor CSE grades, I went to college to get a City & Guilds qualification in Catering & Hospitality. I spent a decade working as a chef at various cafés, restaurants, and hotels on the island and thoroughly enjoyed it. Unfortunately, the hours and the pay weren't great, so I looked for other opportunities. Since leaving the industry, I've always liked pottering about in the kitchen, listening to the radio, and I will ...