MND can get in the sea

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

Unfortunately I have felt unwell this week. I may have picked up festival flu after last weeks shannanagens, or maybe it was covid as there has been a spate of cases locally. Either way, a cough, sore throat, headache and the shivers has laid me low. Of course my nurse, carer, and wife, Alice has looked after me, with suitable aplomb, bringing home Lucozade and paracetamol and I have spent even more time in bed than I normally do. I was off drinking coffee, so I must have been ill, and I couldn't face sunbathing with a temperature, which was a shame as we are enjoying a mini heatwave in the UK.  This week, I have mostly been eating cold oranges from the fridge, warm  peaches from the conservatory, figs, and kiwi fruit, so I have definitely been having my 5 a day in pursuit of feeling better. The non stop Olympic action from Paris has also aided my recuperation. My friend and nutritionist doctor, Sandra will be pleased with my fruit filled diet. She has recently been looking into MN

This week, it is my turn to be the chief documenter and I thought I was in for an easy ride as David basically did nothing for the first 3 days of the week.  MND is exhausting and David gets so tired, he needs a few days now and then to rest his legs and recharge his batteries.  But of course, nothing in our lives stays quiet for long so by Thursday, we were back to our usual hectic life! First on the agenda was a family day out at Paulton’s Park.  This was kindly arranged and paid for by the local branch of the MNDA and offered as a way of spending some quality time together for families.  Rachel came over from the Island, Anna down from London and Fin just had to make it out of his teenage bedroom! Unfortunately, despite the week’s radiant sunshine, we were not so lucky with the weather, but we were still determined to make the most of it.  Luckily, the poor forecast had kept lots of people away and we found the park to be very quiet.  But even if it had been busy, we wer

Well I made it! After successfully fulfilling my first target of being able to walk my daughter down the aisle in April, my next goal was to still be walking on the anniversary of my diagnosis and on Wednesday, although my legs are definitely weakening, I managed, with help from my rollator, to walk to the bus stop on my way to the hospital. Coincidentally, on the very day last year that we were given our devastating news, I had a respiratory appointment and Alice came out and met me at the bus stop.  I was feeling okay a year on from our 'D-Day', remembering what we have achieved in the last twelve months, and looking forward to all the things we have planned for the next twelve, but Alice really wasn't looking forward to the day and was quite down for a few days beforehand. Luckily, almost all of my observations and results from the appointment were very good, which made us happy.  I hadn't lost any weight since the last appointment, and my BMI is OK at 20