30/09/2025 - 'Cherrabowlies' by David

In the weeks since the last blog, we've been busy doing some really worthwhile and positive things, but unfortunately in the days in between, I have been feeling very sad, frustrated and annoyed with my situation. 

We will start with a positive – I received the results of the biopsy I had taken of my nose.  I had a persistently bleeding area which looked suspicious of skin cancer, but the results came back as sun-damage only and since having the area removed, I have had no further problems.  This is a relief as it was liable to bleed at every knock and when other people are getting you dressed, they may not always remember to take particular care not to touch it with jumpers etc.

Another positive came in the form of a parcel from John which contained a signed Derby County FC shirt!  As Alice took the photo of me holding it up, she noted I was already wearing a Derby top and scarf, so this really completed the look!

So, although there is plenty of good, there is still plenty of bad and the tough times I talked about in my last blog have continued.  I have noticed that the strength in my hands and arms has deteriorated quite remarkably recently, and preparing food and drink while Alice is at work is becoming very hard. Alice sets everything out within reach on the work surface for my breakfast including an already poured orange juice and the coffee machine filled with water, and I attempt to prepare cereal or toast with varying levels of success. I asked Alice to film me trying to spread butter on my toast so that people are aware of the impact motor neurone disease has on everyday activities. The resulting video had over 2500 views online, which confirms just why we do these things.  I am still not sure people fully realise how difficult tasks are so this was a pretty good demonstration.  Making my breakfast and lunch is really the only thing that I can still do for myself, and to lose that ability will be devastating as it means that I will need Alice to be around permanently, as I in turn, lose more and more of my independence. 

The video can be viewed here:

Video

I've also noticed that my legs are also weakening to the extent that I may not be able to self-transfer from one chair to another for much longer, which will affect my ability to get onto the toilet, into a vehicle, and into my riser recliner chair, without someone’s help.

I am also getting a little worried about my word finding abilities.  I can think of the word I want to say but then nothing comes out – sometimes every word apart from the one I need!  I remember my dad having similar troubles when he was first diagnosed with dementia, and this can also be a part of MND.  It does come and go, and I think stressful situations worsen it.  For years, I have been calling Alice either Rachel, Anna or Lois but now lots of other things have different names while I trip over the words I am trying to find.

The next thing to get me down, and the final straw before a mini meltdown (more on this later) was the ongoing problems with my feeding tube which has now become infected twice and I'm seriously thinking of having it removed. I wonder if it is in the wrong place as it's right in the crease of my stomach and when I bend over it causes tension on the tube which is painful.  I asked one of the HEN nurses to come and have a look and she assured me that I was looking after it correctly, so we'll see. I'm not using the feeding tube yet as I'm still eating and swallowing well, so I could have it repositioned.  

The autumn weather has been sunny enough to sit outside and on one occasion, it was so warm that I was sunbathing in just a pair of shorts. Other days were quite cold, and Alice came home one day to find me sitting in my recliner wearing my dad's old Warrington RFC gilet, a scarf and a hat. Since my diagnosis, I feel the cold more acutely, but luckily the Motor Neurone Disease Association fund an annual winter fuel allowance grant, so she turned the heating up, and I have been warm ever since. 

Talking of clothes, my wardrobe is still upstairs, so apart from a few pairs of socks and shreddies, everything else is out of reach. As such, whenever we go out, Alice has to bring down an outfit for me, so it's always a surprise to see what I'll be wearing. 

Alice was able to attend the local MNDA lunchtime monthly meet up, and we got to chat with those that have become our friends, and also some that were new to the group. In the two years since we first joined the MND community, three of the group have passed away, and all of us suffering with this condition are sadly, aware of our fate. This group of volunteers, sufferers, and carers is invaluable to us as we discuss and share our experiences on our unwanted journey. 

After my MND diagnosis back in 2023, Alice and I visited the Countess Mountbatten Hospice, our local Hospice, just to see what it was like for when I might need them.  We decided to revisit to update them on my progress, and to see if we could benefit from their services. The hospice physio we met was Mary, who crazily lives in Cowes, the town I grew up in, and works part time at the Earl Mountbatten Hospice on the island. She said she had been to one of my DJ sets in Cowes and also joined us on our Walk with Me for MND fundraiser last year, so we had a lot to talk about. We have a return appointment booked for next week to meet the hospice OT to look at some different transfer methods, aids, and equipment, and strategies and ideas for supporting dressing and eating. They also provide exercise classes and activities, so we've signed up for a bit of chair yoga.  She has also promised to look into the possibility of me having a bath at CMH.  I am no longer able to get upstairs in our house or even get in and out of a bath anymore and I miss it, but we are hopeful they have a nice big bath with a hoist at CMH I could use – watch this space.

It was a valuable appointment as she assessed my strength and noted I have some stiffness in my unused joints so she devised a bespoke plan of exercises and stretches I can do myself in a chair and then some stretches Alice can help with to keep my joints mobile.  Although we didn’t go into any advanced care planning, we did discuss general coping and it was nice to have the time and space to go through everything.  On the way home, we decided to treat ourselves to a Wagamama for dinner as we don’t get to eat out that much anymore.

I had also been invited out to a leaving do to bid farewell to Owen, an ex work colleague of mine who is moving away to study for his PhD. I had been feeling despondent and wasn't sure I wanted to go, mostly worrying about getting around in someone's house and also feeding myself. Alice and my friend Rachel encouraged me and reminded me that my friends will help me and of course, they did indeed look after me and brought me everything I needed and we all had a lovely evening of the usual games and laughs. I came home at nearly midnight feeling pleased I'd pushed myself to go.

In the pursuit of finding a cause or cure for motor neurone disease, one of my close friends since high school is very kindly raffling off one of his hand-made electric guitars, with all the proceeds going to the MNDA.

Carl is one of those annoying people that can seemingly turn their hand to almost anything, and one of his many talents is woodwork. He and I were in many teenage bands together, at a time when the name was more important than the music. Eggy Egghead and the Marmite Soldiers was a particular fave! He has recently made a couple of lovely guitars for my musician friends and this one looks like a beauty too. Tickets are £5 each and available at:

 Raffle tickets

I must also thank my niece Milz and her son Owen, who have signed up to the 75-mile Dog Walk in October for the MNDA, and also one of our running friends Chris, who is training for a 250 mile ultra event raising money for the MNDA in my name. It involves running for 10 back-to-back marathons over 4 days and nights concurrently with just quick stops to refuel and catch a quick nap.  I’m not even sure his job walking miles as a postie can ever prepare you for a feat of that magnitude!

We spent a lovely weekend of assisted running in Nottingham completing two 5k's on the Saturday, and our first half marathon on the Sunday. Colwick parkrun was a flat, scenic course on tarmac around a couple of lakes, and would you believe it, Alice pushed me around in 27:57, another male wheelchair course record, my 21st.  This is getting boring now, I hear you cry. 

We then hopped into a taxi to Holme Pierrepont to take part in the Run with Rich 5k. Richard Whitehead MBE is a Gold medal winning British Paralympian, and his foundation organise an inclusive run for those with disabilities, and we ran with our friends Martin and Natalie, who were pushing Ewan, and Joanne who was pushing her daughter Alice. 

We met Richard, wearing his gold blades, and also Matt Hampson, a former rugby player who broke his neck at an England U21 training camp, who has since formed the Matt Hampson Foundation, which supports people with serious injury or disability through sport. Matt is paralysed from the neck down and on a mobile ventilator. It was really helpful to see his gadgets and chat through solutions to situations that may happen for us in the future. He got an assisted ballot space in London marathon next year, so we shared our experience with him, and he tried out a Delichon chair for the first time on the course. 

The next day we ran the Robin Hood half marathon. A very hilly race but we had our dear friend Andy with us to help with the pushing. We had so much positive support from other runners and spectators, and we had a blast despite the hills! It was lovely to see our friend Rob in the crowds, banging the MNDA drum. 

Prior to the weekend, we were invited onto BBC Radio Nottingham's morning show to talk about the half marathon, and we were able to showcase the opportunities and benefits of assisted running.  We were very nervous as it was a live interview, and we hadn’t been prepped on the questions, but we tried to get across our message of inclusion in sports for disabled people.

We stayed in a lovely boutique hotel which was advertised as accessible but unfortunately wasn't. There were steps from the street to the front door and although it was on the ground floor, the bathroom had neither a low-level bath, a seat in the shower, or rails around the toilet.  Getting up and down those 3 steps felt like a mountain, and it was lucky that Andy had come with us to help as it was more than Alice could manage on her own.  I needed help with one person in front holding my hands, and one behind pushing up my legs.  I felt very wobbly, and my legs were on the verge of totally giving way a few times.  It's back to a Premier Inn for us next time. 

So, onto my aforementioned meltdown… it was the culmination of a month of feeling down and holding in my emotions and after a particularly bad night that included reflux, neckache, limb weakness, sleep apnoea, and lying awake contemplating the future, It all came to a head, and I exploded in front of Alice in the morning. I fell into Alice’s arms and blubbed my heart out, and with it, my frustration and anger at what I'm going through. After the tears and a good chat, we both felt better and recovered our composure to face the day. Although we do our best to enjoy life as much as we can, we both know what the future holds, and so I guess we deserve a blow out every now and again. 

Sometimes life is not a cherrabowlies