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 🏳️‍🌈

Wales is a long drive from Southampton. We stopped twice, got caught in three traffic snarl-ups on the way and on finally reaching Wales, we realised that we still had 78 miles to our destination. Let's just say it was a long day, but what awaited us was worth the 7 hours on the road though.   Alice and I had a lovely week in a renovated Blacksmith's forge on an acre of land, within a scenic valley in West Wales, and it was as peaceful as it was stunning in it's beauty.  The owner's mission is to produce a garden of plants that will feed either humans or wildlife and the creatures were abundant. I encountered numerous species landing either on my book or my leg and one day a Butterfly landed on my shirt. The next day a Dragonfly stopped on my hand. It had been flitting around the mill stream that had powered the Blacksmith's bellows years ago, and I let it rest there as I admired it's delicate wings - almost see-through, colours glinting. We shared a moment befo...

12 photos of the same shorts and same smiles on the Blackgang Chine mushroom - 2012 to 2023 🍄

I grew up on the Isle of Wight and only left it to live and work with my Alice in my 50's. We always have a week on the island over the Summer and my stepson has chosen Sandown so many times that it has become a tradition. He likes the beach and the waves and the ice creams - of course he does. But his favourite activity is having his tea on the pier. chicken korma with rice, chicken korma on a jacket potato or his favourite (and get this) chicken korma in a giant Yorkshire pudding! Always with a can of pop - oh to be 14 eh? Such a culinary feast is always followed by a trip to the pier's arcades to the penny falls machines - of course! This is Alice's favourite activity and I try to share the enthusiasm and have to admit their excitement at winning a key ring or a plastic soldier is impressive. Alice also likes the dance machines and Guitar Hero and she performed a very creditable Anarchy In The UK. The day finishes with a visit to the Rock Shop on the walk home. ...

This morning, we visited one of our favourite places in the whole world - the hotel where we got married... and it will soon be the setting for our vow renewal part-aay! How could it be anywhere else?? No sad faces allowed - only fun, food, drinks and dancing!

The Motor Neurone Disease Association - our thoughts.... David and I are planning a series of fundraising events to raise money for the MNDA and many of Dave's friends and family members have also taken on challenges to raise money for this charity.  As vegans, we do understand that the MNDA fund animal testing to find treatments and cures for MND. To be clear, although we'd love to find a cure for this awful disease, we are both strongly against all forms of animal testing. Whether we like it or not, this is the law in the UK at this time.  However, our decision to raise money for this charity is based on the other services they provide (services we have already used and will also need to use in the future). They provide a helpline for any kind of support or advice, specialist financial and benefits help from CAB staff, they will pay for Dave's voice banking that would otherwise cost us £££, they loan equipment or provide grants for equipment in the house, they provide a f...

David and I are really looking forward to renewing our wedding vows in November. We've only been married 6 years but it's important to us to reaffirm these vows and enjoy a big celebration party while David still has his voice and his best dance floor moves 🕺🩵💙

So 2 weeks on from my diagnosis, I have started to enjoy this beautiful life! Alice and I joined 15,000 others at Vegan Camp Out where all the food, stalls and artists are vegan and it was the first time we have camped since Bestival 2012 when I put the tent up and Alice started crying. Great company, lush food and I got to see Bob Vylan, Sam Ryder and Romesh Ranganathan! I ran a parkrun with no hills (from now on hills can just F.R.O.) I volunteered at a junior parkrun, high five'ing lots of kids and I finished the week floating blissfully and thoughtless in a sensory deprivation pod.  The MND specialist nurse came out to visit us and we spoke about things like taking my pension early, disability benefits available and hospice care. More bad news this week too. After using the 7 floors of the hospital for the last 15 years as an exercise plan going up and down all day, I have finally succumbed to using the lift which is disappointing.  My n...

My gorgeous daughter Rachel Baker, my beautiful neice Alex Ives and my lovely work colleague Anna Meris Foster are all running 60 miles in August to raise money for Motor Neurone Disease in support of my diagnosis.  Rachel went out at 5.45 am on August 1st and ran 2.5 miles despite not having run for months and she and Alex are planning to go out running together. Anna has even made a map for our ED research team to show everyone what an amazing challenge this is as it is the distance from Southampton to London! Anna in the guise of Dame Edna Everidge has already run a mile - only 59 to go Anna!  Here are their links if you would like to donate  https://m.facebook.com/story.php?story_fbid=10218827522238038&id=1800690828 x https://m.facebook.com/story.php?story_fbid=9703567163048309&id=100001853645227 https://m.facebook.com/story.php?story_fbid=614435290810559&id=515294511

For anyone feeling sad because I can't run around a football pitch anymore, I'm pleased to say that my sister in law has bought me a garden goal set and I have my league ladders ready for the start of the football season on Saturday. I'm as excited as I was when I was 10! Thank you Ellen Adams x

Well this week has been better than the last one! Since my shit diagnosis, Alice and I have been out for a cider, watched a couple of Steve Martin films (All Of Me, The Jerk) had lots of hugs and I did a DJ set! We also went back to work this week which made life seem a little bit normal even though it's anything but. I apologise for the numerous posts on here but I feel as though I have a lot to share and I don't know how much longer my mouth or my fingers will allow me to convey my thoughts. This post concerns a subject close to my heart so apologies to anyone who doesn't understand the beautiful game. Unfortunately I have had to come to terms with the fact that I cannot run around and kick a ball anymore.  Since retiring from competitive football on the Isle of Wight in 2011 aged 45, I set up a Monday night kickabout for my fellow nhs colleagues in Southampton and have been lucky enough to play charity games on Southampton FC's Mary's Stadium meeting Saints 1976 ...