MND can get in the sea

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 desper

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

This week was all about Teddy! Our latest addition to the Baker household is our gorgeous Savannah Tabby cat and he has settled in extremely well. He watched the Paralympics from his dark hidey hole under my record decks in the conservatory for the first three days, only emerging for food once the daylight had run out. By Wednesday though, Alice had enticed him out with catnip and treats and he rubbed himself up against her and was happy to wash himself in front of us, and by Friday they were cuddling on the sofa. A quick internet search informed me that Savannahs are known for their loyalty so he will be a companion to me over the coming months (and hopefully years) while I'm in the house alone and a good friend to Alice once I'm a tree. They also have tall, thin bodies, a small head, and big ears (a bit like Alice). He's a very handsome fellow and we've fallen in love with him. Apparently, they can be trained to walk on a leash and also to fetch. &