25/01/2026 - 'From turntables to transfer aids' by David

I'm finding it harder to independently transfer from my power chair to either the toilet, or my recliner, as my arms and legs are becoming weaker, so we asked the Occupational Therapists to deliver a transfer aid for me to try. This will hopefully make transfers easier and safer, but it does need a second person to assist. The loss of autonomy is disappointing but inevitable. It's quite a bulky piece of equipment to store, so sadly I have had to say goodbye to my records and decks to make room.

I bought my first record in 1973, aged 7, and continued to collect over the years until tapes, then CD's took over. Luckily, I kept all my vinyl, and when the surprising resurgence of record buying happened in the last few years, I was able to play them all again, and was able to add charity shop and online auction purchases to my collection.

I logged all my vinyl on the Discogs app last year and found that I had collected 1,207 records, made up of 7" singles, 12" singles, and albums. It's such a shame that I have to let my collection go, but it's the right thing to do as someone else can now get the pleasure of playing these records.

I gave my decks to a fellow DJ, for a donation to the MNDA, and Alice took what records she wanted, followed by family and friends digging into my crates.

I sold my Mud, Orchestral Manoeuvres In The Dark, Aztec Camera, Go-Betweens, Split Enz, and XTC collections online, which left about 500 records left, which I'm going to give to my friend Andy at AAA records on the island, also for a donation to the MNDA. It was a melancholic experience but I'm happy that the records will live on, nearly 60 years after some of them were pressed. 

You may not be surprised to hear that I am a diarist, and I have documented my life and that of those around me ever since I was given a Radio 1 diary in my Christmas stocking in 1970s. In the years since, I have amassed a boxful of diaries full of stories, memories and emotions, and it felt like a good time to read them through one last time, before making more room, and less clutter for Alice to clear once I've gone. 

My teenage diaries are full of football scores, gigs, and girlfriends. Then I detail moving out, starting work, falling in love, and settling down, before getting married and starting a family. After that, all the talk is of Rachel and Anna growing up and into their teenage years. It was lovely reading about the fun we all had together. The diary detailing my divorce was hard to read, but after that Alice appears in my life, and it was once again the writings of a happy boy, and lots more gigs and football scores. 

As I can't reach to touch my feet anymore, Alice has had to add the clipping of my toenails to her list of tasks, so this week I paid for a lady to come and attack the talons. Not only did she cut and file the nails, but I also received a clean, moisturiser, and massage. I don't know who was happier, Alice, or I?. It was a lovely experience but then left me stuck in my chair for the rest of the afternoon as my moisturised feet couldn't get any grip on the floor for me to stand. Luckily Alice was home soon to fetch a pair of crocs for me!

It seems like a long time ago now but we actually had snow in Southampton. We rarely get snow down south and it was only a light dusting but it was an opportunity to go out and smell the pure air that snow brings, and to get a photo, which Teddy got involved in too. 

Since my diagnosis Alice has periodically posted little video clips of me struggling to get up stairs, or peeling an orange, but recently she's acquired the director's baseball cap and chair, and gone all Hollywood with a couple of longer films, edited with a voiceover and soundtrack. The first was Spend the day With me - MNDA wife, carer, mum, and nurse. It details a day in Alice's shoes, and it has had a few thousand views online and some lovely comments.  

Alice has lots to do, juggling looking after me, keeping the house and working but we're lucky to have friends who understand and pitch in to help. We've been having some lovely meals dropped off from Claire which go into the freezer and means Alice can have a night off from cooking if she's too tired. We also had a delicious delivery from our friend John of Hampshire Vegan Catering. He'd catered for an event and offered to drop off the leftovers of curry, breads, falafels and raita round. It was a real treat!

The second film Alice made was 'How to run parkrun with Motor Neurone Disease', and I don't think that I need to explain the plotline. It has so far had an incredible 16,000+ views, raising awareness to the general public about assisted running, living with a terminal illness, as well as the positives and problems we encounter. Again we had some really lovely messages from fellow runners, sufferers, carers, and total strangers.

Alice has created an MNDA Can Get In The Sea YouTube channel, which you can all subscribe to.

'MND Can get in the sea' Youtube channel

It features all the films and clips that we've produced so far so give us a like or share.  She has even uploaded my interviews from Vectis Radio a while back and it's been interesting to hear how things were just after I was diagnosed. In one interview, I tell Ian the host that I'm still running and working but might need to use a stick later in the year. 

We've also had coverage in the media. A local podcast called So So Southampton featured an interview with us both, after the presenter Zoe, saw us at parkrun and wanted to get our views on living with MND and our assisted running.

You can listen to it here:

The So So show podcast

This was followed by an item on the Run For All website, the company that runs the Rob Burrow Leeds Marathon in May, that we are training for. The late amatuer athlete Jane Tomlinson CBE, made headlines around the world, taking part in a series of incredible endurance events despite being diagnosed with an incurable cancer. Run For All was set up as her legacy. The piece on Team Baker includes our assisted running story, and our passion to be part of this iconic event. 

You can see the article here:

Leeds marathon article

The MNDA also featured us in a Facebook post about the marathon and our fundraising and we're hoping to be in an article in the next edition of the Thumbprint magazine - watch this space.

MNDA Facebook article

As you can see, we want to raise awareness about MND, fundraising and assisted running at every opportunity!

Alice recently started a local yoga class and has put in a carer's grant request to the MNDA for a year of paid classes. It's important she gets some time to herself and the MNDA recognise and support unpaid carers in trying to boost their wellbeing by offering funds for such activities. 

Our parkrun yesterday was at Jersey Farm in St Albans and it was a lovely course amongst fields, trees and birds singing, under a cold, clear and sunny winter sky.

At the start line, a couple asked Alice how the buggy was powered. "My legs!" She replied.  It was muddy and hilly but Alice pushed me to a 26th Male Wheelchair Course record, beating the record set just three weeks ago! 

Our friend David R picked us up and on trying to transfer to his car, I realised for the first time that I just couldn't lift my left leg at all to help shuffle round. It was disappointing and I was grateful I had them both there to help lift me and Maria to manoeuvre the buggy 

Thank you to Alice's parents June and Chris, for a lovely meal out and tickets to a Simon and Garfunkel show, which we really enjoyed. The show always includes a meal which we enjoyed but I did need to help to eat. After moving the romantic candles to the side to avoid her sleeves catching fire, Alice fed me... carefully picking out the mushrooms from the beetroot bourguignon!

Thank you to Darren, Tom, and Barker for the record donations, and to Val, who asked for MNDA donations for her birthday recently.

Thank you to Layla for sending me a photo and message saying that I was with her while she was running a 65k ultra marathon in Nepal, wearing a pair of Baker socks.

 

And a final thank you to my niece, who made a lovely MNDA bracelet for me. I've added it to the collection Erin x