MND can get in the sea

We've had some rain this week haven't we? In Southampton, we had lots, and on the Isle of Wight they had lots and lots and then a little bit more.  When growing up on the island, I remember the coastal road between Gurnard and Cowes flooding every winter, but I don't ever remember closed roads and buses cancelled! This is the same route that we are walking on our MNDA charity walk in two weeks' time, so fingers crossed that we don't need wellies or snorkels! On Tuesday night, I heard a rainstorm from my bed and it was so ferocious that I opened the curtains and the window, knelt on the bed, with my elbows on the windowsill, and just watched it all happen. The rain hitting the pavement under the lamplight, the sound of the rain hitting the car roofs, and the lovely smell of the air during a downpour. Some people call it petrichor, I call it beautiful.  On Wednesday, I did a DJ set with my mate from school Darren. 'DJ Dazzer', was a proper professi...

After a week of the usual up/down, happy/sad emotions, I ended up frolicking in outdoor beautifulness.  The working week started very pleasantly, as there was a package under my desk and as soon as I opened it, I knew who it was from. In my theatre days, I often worked with a lovely anaesthetist named Louise, and we invariably talked about a shared passion - advent calendars! Not the modern choc filled, cartoon adorned type, but the traditional Father Christmas or forest animals in the snow type, with obligatory glue and glitter finish! I already have two calendars for this coming festive season, but this beauty is by far the best, so thank you Lou Lou for thinking of me, and remembering our chats between checking our patient's blood gases, end tidal CO2's, and train of four twitches. The rest of the week had my emotions fluctuating between being upset at my legs feeling so weak that I needed Alice to help me up the hills, being bemused by the sole of my DM's literally fl...

13 weeks since my diagnosis, and a week which included Friday the 13th and they say that the number 13 is unlucky for some. Well, I'm not superstitious, and am happy to walk under a ladder, but my week didn't start off very well and Alice and I were getting bogged down in paperwork and the emotional baggage of MND. My walk to and from work was slow and my legs felt weak and every day, I was hoping they would feel a little bit stronger, to no avail and we had our first appointment with my consultant and specialist nurse since the bad news 13 weeks ago. They were both happy that I am still running once a week, and that I am getting all the help and assistance available in the community. He wouldn't, however, sign my form saying I have less than 12 months to live, which would have enabled me to cash in both of my private pensions. I guess its good news as he must think I'm doing well and although I can't get at my money, I'm going to hang around for a while longer....

My week started in the place I love to be. At a football stadium! Not only was it a night game, which is always more thrilling, but I was back in the very first league ground that I was taken to by my father when I was eight - Portsmouth's Fratton Park. I was in the away end, as my hometown club. Wycombe Wanderers were in town for a top of league one clash. We went 1-0 up then lost 2-1 to a cruel injury time winner, but Andy and I had a nice vegan pie inside the ground and enjoyed a good sing-song, and after all, even though we all want our team to win, it is only a game. Since my diagnosis, I really have come to appreciate the small things that used to either pass me by or that I gave little thought to. I take great pleasure in stretching out my legs when I'm in bed and then snuggling up into the foetal position and it feels good. Both of these things, I will no longer be able to do once I lose movement in my legs so I'm making sure I enjoy it whi...

It's been a mixed bag of a week - although some bad, I'm pleased to say it's mostly good! The first news to share is that after our excitement of the house purchase, I'm sad to report this fell through. This was desperately disappointing for both of us as it seemed to fit the bill on all our requirements. Alice had spent a lot of time and effort finding the house and then getting the funds and paperwork sorted and took the news very hard and is still feeling fragile. Although we're sure we can find somewhere else, we're very aware of the time pressures involved. We expected house hunting to be hard but it's even harder when you throw MND into the mix.  Our fundraising has now reached a massive £3500. We have approximately half on the Justgiving and half in cash donations. We have agreed anything online will go to the central MNDA charity with cash donations being split equally between the local Southampton and Isle of Wight branches. Having used the MNDA res...

This week, after many things that didn't, everything went in our favour, and we have so much to tell! We have found a house! It's the right size, in the right area and has the potential for a bedroom and wet room downstairs, that I will one day need. We've had a few disappointments recently with potential properties so we were really happy when our offer was accepted.  The week didn't start out great though. Life wouldn’t be normal without a Baker drama and on Saturday as we prepared to leave the house to drive to our local parkrun, I couldn’t find the car keys and while I frantically searched the house, Alice was taking off her running gear with steam coming out of her ears and getting back into bed. One of our lovely running buddies saw our sad message that we wouldn’t be able make it, and from his position on the start line, he immediately ran back to his car and told us he was on his way. Minutes later, with Alice suitably re-attired, Jon and his dog Jasper were scr...