MND can get in the sea

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

I've had a busy but enjoyable week and the rollator and I have been out every day! On Monday Alice and I were up on the common being interviewed and filmed for promotion of the Great South Run. Alice is taking part as a pacer, encouraging runners to attain a certain time. She's been given the job of pacing 2:10 and she's also hoping to push me on the 10 mile course around the roads of Portsmouth and Southsea. The pacers are sponsored by Solgar vitamins and supplements and they are going to use us in their promotion of the product and of the race.  They had asked all the pacers if they had an interesting story to tell and we thought it would be a great opportunity to promote inclusion for assisted runners in races. We were a bit nervous but we faced the cameras, answered the questions and ran up and down a path while they filmed us.  On Tuesday the rollator's wheels hardly stopped turning. My daughter Anna travelled down from London to see me but the rain spoilt our plan

The Motor Neurone Disease Association was formed in 1979, when I was 13. Little was then known about the life-shortening disease, and how it affects your arms and legs, and the way you talk, eat, and breathe. The Association was born when three volunteer-led support groups in the UK joined forces – spurred into action by their own personal experiences with MND. They were united by a goal to ensure that anyone living with the disease could access the right care at the right time. The MNDA became a registered charity, with Professor Stephen Hawking as Patients' Patron, and embarked on the first research project, into the risk factors associated with MND. Within the first decade, 40 local branches of the association opened, and the inaugural national MND Awareness Week was held, and the annual income exceeded £1 million.  Each decade since has been marked with ground-breaking new developments in the provision of transformational care and support for people living with, or affected by

This week I was reminded on Facebook memories that a year ago, and just weeks before my diagnosis, I completed a half marathon* (*editors note - it was actually more than a half at 15.5 miles) at the Ultra London event. This demonstrates just how progressive this disease can be, as I can only walk for about 5 minutes before I need to rest my legs these days, and that is with my rollator or Alice's arm too.  I tested my legs on Tuesday on a visit to the hospital and made it to the bus stop and then onto the main entrance where Alice met me. We weren't going for an appointment though, we were going to eat cake! My old research department was holding a Mad Hatter's Tea Party and we all wore hats and filled our faces for two charities, The Motor Neurone Disease Association and Marie Curie. I made some butterfly cakes and added them to a long table of offerings. I must admit that I ate four cakes during my visit, but in doing so, I felt that I had really done my bit for charity