MND can get in the sea

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...

This week, David put an email around the research department to our work colleagues explaining that he has MND. Southampton is a large university hospital and our department has maybe 300 employees so not everyone was aware of his diagnosis. Over the last few days, he has had numerous loving hugs and emails of encouragement and I know he's grateful for everyone that reached out to him. We have been selling MNDA wristbands and badges from his desk and people have been very generous. Our Just Giving page has now surpassed £670 so thank you to this weeks donators Joyce Dyer, Lydia Scarlett, Ines Rodrigues, Danny Pratt, Di, Sue, Karen, Jenni McCorkell and Veena.  David and I went to our first MND social meet up, where local volunteers provide refreshments and a chance to meet and talk to fellow sufferers and carers. We had discussed whether or not to go as it would be the first time we would actually meet someone with MND. We got there first and it was very hard to see tha...

I was on annual leave this week and what a week to chose! The UK is enjoying a late Summer heatwave and so I was able to enjoy the sunshine while busying and enjoying myself.  Zippy the 2cv is now ready for it's M.O.T. test and the plan is to polish it up, tax and insure it, have a few last drives, take some nice photos and then sell it on. Zippy is my third 2cv and I have loved the ride and the looks and smiles that a 2cv engenders.  I made a lovely chilled Watercress soup which was ideal in these temperatures, and some savoury and sweet gluten free scones for Alice. I headed to the Overdraft in Shirley, armed with a host of records for another open decks night. I was joined by friends who enjoyed tacos and beer. Despite her many pleas, I still wouldn't play 'Superman' by Black Lace for Alice but I did play Bowie's 'Be my wife' for her. I also went on a cruise! Well, actually I didn't but it felt like I did! I spent a couple of d...

Diagnosis Day 17/07/2023 - we are called into the doctor’s office promptly and as we go in, we are introduced to ‘Clare’.  Now I have been a qualified nurse long enough and seen enough medical programs on TV to know that it is never a good sign if you go into an appointment to hear some news and you are introduced to another person sitting the corner with a clipboard.  I didn’t dare ask her job title but we now know her as the MND co-ordinator for our area and she will be sorting out all of David’s care in the future.  The consultant tells us that based on David’s presentation and history, clinical examination and EMG test, there can be no doubt of the diagnosis – spinal onset ALS (a form of MND).  Our dreams of retirement to an Isle of Wight cottage for walks on the beach have turned into deterioration and disability in the space of that one sentence.  There are actually only a few tears as despite knowing this was coming, disbelief and shock still seemed to be...

Sounds & Grounds record shop and cafe in Cowes hosted our first fundraiser for the MND Association it was lovely afternoon shared with family and friends. I shared the decks with my lovely friend Michelle Salsbury and we played for over four hours.  She played 50's and 60's rock and roll, and northern soul and I played 70's and 80's glam, punk, disco, soul and electronic. We sold orange and blue MNDA wristbands and badges and we had a wooden box, beautifully made and decorated by Shaun Ashley and Ellen Adams with one half orange and the other blue with slots for cash or coins and we asked everyone if they were Team Orange or Team Blue when donating, with a QR code for online payments.  Anything donated in cash goes to the local Southampton branch of the MNDA while online donations go centrally.  Our grand total on the afternoon was £384 with a further £50 donated the following morning. Team Orange was surprisingly way more popular than Team B...

After my harrowing last week, I was determined to enjoy myself but I think I over did it! Two days after Southampton parkrun, Alice and I cycled into the New Forest, then two days after that I spent a day putting my beloved Zippy the 2CV back together after it's visit to the car hospital for some welding. Big thank you to my friend Adrian who gave up a huge amount of his time to come over from the island to help and Craig who came round during his working day to assist with some heavy lifting. We're lucky to have such generous friends.  The next day I couldn't move a muscle and it actually hurt to bend down to sit on the toilet! Consequently, I was forced to sit on my bot-bot for two days, and it's certainly been a hard lesson in learning my new limitations but I haven't been idle.  Alice and I have started this blog to document my motor neurone story called MND Can Get In The Sea!  Well, you know all about it as you're reading it right n...

Alice and I ventured into the New Forest on August Bank Holiday Monday on our tandem for our first bike ride of the year. We usually pack the panniers, charge the speaker and head out west three or four times over the summer on sunny days, but of course, this year has been a bit different.  The tandem was a wedding present from Alice's parents and we actually rode it on our wedding day! We have also cycled around the Isle of Wight, ventured east to Netley and Hamble on evening rides to eat chips as the sun goes down and participated in Cycle Southampton on closed roads and through parks on it and it's always great fun to ride. I'm always up front, in control of the steering, gears and brakes and Alice is on the back, in charge of the sounds, google maps and camera! That doesn't mean she can take it easy though as the pedals are linked, so if I'm pushing hard, she has to aswell.  We are into trig pointing, where people ...

David’s neurology appointment starts with all the usual questions about his demographics, past medical history and how many beers he likes to drink.  Then we move onto the symptoms – the neurologist jots it all down while working through his questions methodically.  He doesn’t comment much on any of this but then takes David off to an examination room and asks him to strip down to his smalls.  David is reluctant to get his black toenail out – a casualty from someone treading on his foot at the Isle of Wight festival.  I sit alone in the main room while I hear the doctor asking him to look up and down, walk heel-toe, push-pull with his hands, stick out his tongue – the list goes on and David gets the full works.  All the while the doctor makes no comment so we don’t know what he is discovering. We regroup in the consulting room for the verdict.  He concurs with David’s GP that there are abnormalities on his clinical examination.  Much to his horror, he ...

After David's fall, life soon returned to normal but it was our occasional walks up to the overdraft pub in Shirley that started to highlight a few other issues.  David seemed to be walking into me all the time and I thought (hoped) he was just messing around.  ‘Why do you keep budging me?’ I asked.  ‘I’m not doing it on purpose, I just don’t seem to be able to walk in a straight line’ came the reply.  My heart froze in fear but with not much else to go on, I tried to put it out of my mind.  However, on another walk to the pub, David asked me if I could hear a noise when he walked.  And it turned out I could.. and that noise was the sound of his left foot slapping on the floor as he walked.  ‘Maybe it’s just my trainers’ he shrugged.  ‘Hmm maybe’ I said back.  ‘And maybe not’ I thought to myself silently.  I couldn’t get the idea of multiple sclerosis out of my mind but I tried not to ove...

Motor Neurone Disease. Sounds like a shocking diagnosis doesn’t it?  And of course it was a shock to hear those words but I have to confess for us, it hadn’t come completely out of the blue. To get to diagnosis day 17 th  July 2023, we need to rewind back a couple of years to when David first caught covid at the very start of the pandemic, working on a frontline research study and seeing infectious patients with only a flimsy sheet of plastic covering his uniform. The infection knocked him for six and recovery was slow and hard and it soon became apparent David had post-viral fatigue or ‘long covid’ symptoms.  Seeking help was hard as little was known about long covid at the time but what we did know was that David had constantly aching legs.  He could still run but his legs could take up to a week to feel better and we knew this wasn’t right for someone so fit and active.  He attended the long covid clinic, saw the physios and ev...

The first of our planned fundraisers for the MNDA 💙🧡 I have been DJ'ing in Southampton for a couple of years now and I am going to do a homecoming gig on the island! It's an afternoon set at Sound & Grounds in Cowes next Saturday the 2nd of September.  Plenty of Funk / Soul / Reggae / R&B and more! Wristbands and badges available to buy for a minimum cash donation of £2  If you enjoy the vibe be generous - it's a great cause!  You can also donate through this link: https://tinyurl.com/2wjffwzv