MND can get in the sea

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...

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. ...

After last week's exertions on our island sojourn, I had the opportunity of resting my legs at home, doing some serious sunbathing and watching the Paralympics, and that's exactly what I did.  The first human other than Alice and Fin that I had seen for 3 days was Dani, a speech and language therapist who came out to see me to assess my swallow as dysphagia can be one of the symptoms of motor neurone disease. I have noted already that my voice has become weaker in recent weeks and I feel as though I'm swallowing saliva more between meals and at night. She got me to perform various movements with my mouth, tongue and throat, and watched and felt my throat as I swallowed a biscuit and drunk water, and we were both pleasantly surprised that after her evaluation, my swallow was normal. She did detect a slight weakness on the left side of my mouth, but was happy enough to leave me with factsheets on dysphagia and vocal care, and we will talk again in four months.  Alice and I po...

There was no blog last week I'm afraid as I was really on a bit of a downer. I had been feeling poorly for three weeks and was really fed up with coughing, sneezing and nursing a sore throat. My hands and legs were weak, my body ached all over, and I was feeling sorry for myself, wallowing in self pity on my own at home while Alice was at work.  Apart from attending the monthly MND support group meeting, I didn’t leave the house for six days and I said to Alice that I just couldn't write anything down. While resting either in bed or on the sofa, I had a lot of time to think and sometimes too much thinking is not necessarily a good thing.  For the first time since my diagnosis over a year ago, I actually felt scared of dying. It's not the actual death that frightens me as we are all going to go sometime and we just hope it will be painless and atraumatic. MND is largely a painless condition and I've come to accept the inevitable so that isn't my worry. What I am scar...

Another week of feeling like a poor poorly pig I'm afraid. I just can't seem to shake this thing I've picked up, but I had things planned for Monday and Tuesday though, so on with the show! People of a certain age will remember the former Doctor Who actor Jon Pertwee from the 1970’s, swapping heads and being regenerated in the 80's as the scarecrow that comes to life - Worzel Gummidge. I was that age and I enjoyed his portrayal of the lovable but recalcitrant scarecrow, who very rarely scares any crows.  As a child growing up on the Isle of Wight, I didn’t realise it was filmed just a few miles over the water in various Hampshire locations until I moved to Southampton a decade ago. My friend Dean grew up in Southampton and when he mentioned that he knew where the episodes were filmed, I was excited to go in search of Worzel! We chose a lovely day and Dean pushed me in Duggy the buggy for the first time as we made our way through small villages, getting more ...