MND can get in the sea

My little baby 23 year old daughter Anna came down from London to see me this week and it was lovely to see her. She has been three times to the new house, it has rained three times and not once has she brought an umbrella - kids eh? I made vegetable soup and cheese scones for lunch and we spent a lovely afternoon together drinking coffee and catching up.  Anna hadn't met Teddy the naughty cat before, but within minutes, she was in love with him. He's the bane of our lives and spends most of his waking hours wrecking the house, but we do love him and are so glad to have him.  Anna is running the Brighton half marathon next March in my name for the MNDA and her training is going really well. Her first half marathon in 2022, which we ran together in Southampton was my last and I'm so proud of her for doing this. Staying on the fundraising theme, a friend and former football team mate has raised £330 for families affected by MND by walking 75 miles arou...

It's been a fortnight of appointments, testing my legs and having fun, and as usual, we have lots to report.  Last week, Alice pushed me in the wheelchair to the bus stop and we headed off for my three-monthly respiratory appointment at the hospital and I'm happy to report that all the numbers from various tests came back positively and the doctor was very pleased with the results and slow progression from a respiratory perspective. My cough flow average is now 480 L/min (usual adult range is 440-1200 L/min) so I'm still in the safe range, I've put on over a kilo in weight, my blood pressure, heart rate and oxygen levels were fine, and the sniff test and blood results were equally good. I'm down about 10% from last time on my diaphragm strength but they're not concerned and that they don't want to see me for six months now, which Alice and I were happy about. I popped in to see my ex-work colleagues as usual, and I sat at ...

The blog has not been easy this week and I'm not sure why. It usually flows quite naturally but I didn't feel like it this time so Alice has pitched in and tidied it up as well as adding anything I've forgotten. I still enjoy writing it and I will continue to do so but this week...meh. I had a couple of nights on the island, staying one night with my mum, and one with my daughter Rachel and her husband Max. We went to the woodland burial and tended to the flowers around dad's tree and we sat in the sunshine and remembered how caring and funny he was. Afterwards we had lunch at a new Alzheimers Cafe within a Dementia resource centre which includes chiropodist, hairdresser, and masseuse. Dad used to go to an Alzheimers cafe, and he liked to do colouring in, baking, and making Christmas cards in a friendly environment. It also gave mum some much needed respite, from full-time care.  I also had a doctors appointment to try and determine why I'm getting so m...

Twelve minutes after posting the last blog it had already been read in Singapore, Sweden, and America! Crazy eh? Our blog has now had 40,000 views so hopefully we are raising awareness of Motor Neurone Disease.  My life at the moment, is one of mixed emotions. I am both frustrated by the weakness in my limbs, and happy that my life is full of so much joy and love. I have days when I don't want to get out of bed, and I shut the world out and wallow in self pity at my desperate situation. Then the next day, I want to see everything and everyone, and I feel happy and content.  My legs only allow me to walk for about 300 yards now before they wobble and want to give way. So I have decided that I won't walk alone any more as I now need an arm to hold onto. The wheelchair beckons but I'm stubborn and determined to use my legs for as long as possible.  In addition to cramps and twitches and swelling, I have been getting pins and needles in my feet recently too. My hands are desp...

My new housemate and I slept through most of Monday. I'm not quite sure what Teddy's excuse is but mine was the aftereffects of the weekend's shenanigans. I didn't plan to stay in bed all day but my body just wanted to rest, a common complaint of MND sufferers. Teddy found a window ledge up high, which catches the sun, while I went for the more traditional bed, and we stayed there all day until Alice came home to her snoozing boys.  I didn't do much more during the week either. I seem to have got myself in a bit of a routine of resting during the week then going bananas at the weekend! The small tasks that I can still do like cooking the evening meal and the washing up really tire me out and I can't stand for too long. Alice has become my sous-chef, opening jars, carrying heavy saucepans, and mashing the potatoes. I did however, train as a chef on leaving school and worked in cafes, hotels, and restaurants for many years, so she does get well fed. We...