MND can get in the sea

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

This has been the hardest week I've experienced since my diagnosis.  The last five weeks have been a whirlwind of emotions for us both as we have had to face a future neither of of us had planned for. Maybe the enormity of the situation and the reality of what is awaiting me has started to sink in. I have been putting on a brave face for myself and everyone around me and unfortunately it all became too much during the middle of this week and I had a meltdown in front of Alice.  After enjoying two lovely weeks of annual leave and having the excitement of planning activities that I would like to do while I'm still able, reality really did hit home hard. If started while away, when I couldn't open a bottle top and Alice could easily. I knew my arms would unfortunately go the same way as my legs but this was the first sign and that was disappointing. On returning home, Alice and I had our first argument since my 'D' day and that was really upsetting as we have been so c...

Yesterday we headed to Southampton parkrun and bumped into lots of friends which was lovely. I paced 38 minutes so David and I could run together but he ended up running better than we had expected and finished in 36:25 - the exact same time as he ran last week in Wales on an easier course 👏 Not quite a groundhog day challenge ticked off but close 😬  Then we headed to town for Southampton Pride and I walked in the parade with the UHS contingent - really good fun. Then stuffed ourselves in Cafe Thrive Southampton with rainbow bagels 🏳️‍🌈