MND can get in the sea

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 ...

Apart from a quick visit to the island, we have spent the last few weeks at home in Southampton, which makes a change from our usual gallivanting around the country at weekends. Not that we've been idle though. We've run two local parkruns in Hampshire, I've DJ'd at my first outdoor event, we've had a visit to hospital, and I've had a couple of home visits. My friend Mark, is one half of Southampton DJ duo Soul 45, and he was kind enough to give me a slot on their annual Boogie Down BBQ, a free, community event on the common which has become very popular. He told me it had to be dance music all the way, so I left the punk, pop, glam, and electro at home, and went for soul, funk, reggae and disco. The fact that I went on first at midday to an audience of about 30, didn't stop me having a great time, and I had a bunch of 'groupies' from our running club cheering me on. We stayed and had a picnic, while watching proper DJ's d...

When someone asks me how I'm feeling, I used to say that I was fine, like all Brits do, even though we are sometimes far from fine. These days, I just say that I'm okay, which I think, accurately represents how my life really is, nearly two years after my diagnosis. I'm not great, but I'm not terrible.  Abi, an Occupational Therapist, has visited, and we completed a 6 monthly questionnaire about my symptoms. She documented that I'm finding it harder to turn in bed, that my limbs are very weak, and that I can no longer walk unaided and only walk about 20 steps with help.  Filipa, a Neuro Rehab Dietitian also came, and we discussed my diet, my swallow, my bowel habits, and the impending PEG feeding tube that I'm having fitted next week.  Alice and I have good days and bad days, and we've lucky enough to have had more of the former, since our lives were irrevocably changed. Recently however, events have taken us to our lowest point.  A combination of the deteri...