26/01/2025 - 'MND is not fun' by David

Motor neurone disease is not fun. I consider myself lucky that my symptoms are progressing slowly in comparison to the average sufferer of my age, and I would like to believe it's due to looking after my body all my life. All that running, football, cycling and swimming must count for something surely?

My decline is none the less, very disappointing, and also, so frustrating. I need my stick around the house, and climbing and descending the stairs is not easy now. The other day, Alice and I were in the kitchen and I felt myself falling backwards so I shouted to Alice and she held me up. My legs feel as though they are going to buckle under me, and I know that they will sometime. Until then though, I will plod on until the wheelchair becomes my new best friend. 

My hands are weakening too, so things like tucking in my shirt, getting dressed, putting socks or gloves on is not easy any more. Alice and I went to McDonalds this week for a McPlant and I couldn't hold my burger or pick up the chips, so Alice got me a fork to make it easier.

One of my lovely Occupational Therapists, Bryony, has secured funding for a ramp to the front door, which will in turn allow me to apply for an electric wheelchair. I will then be able to get out to the shops and on buses independently, which once the weather improves, will be nice. Until then, I'm a prisoner in the house all day, and dependant on Alice to push me when outside. She already has to do virtually everything around the house, which coupled with working full-time, is very tiring. She doesn't complain though, and I'm very grateful to her. Bryony has also enquired about a riser-recliner chair for me as I'm starting to find it hard to get myself up from a sitting position and I'm worried I'll get stuck in a chair.

The only job that I can still do around the house is the cooking of the evening meal. I trained as a chef on leaving school, and have always enjoyed pottering around in the kitchen with the radio on. Cooking a meal isn't easy though, when your hands can hardly hold, cut, or stir the food, and you have to sit down every five minutes. Alice already has to open packets, serve as I can't lift a saucepan and then carry the plates through, while I hobble to my seat, so I'm not sure how much longer I will be able to complete my one job!

I've also started to spend more time sitting at the kitchen table during the day while Alice is at work. The father of a friend of mine had Multiple Sclerosis, and she once told me that he spent most of his time doing just that, and I remember thinking what a strange thing to do. Well now I can understand why. I have my breakfast at the table, and as walking around is both tiring and a little scary, staying where I am is not a bad place to be. With the radio, my phone, something to read, and all the cupboards of food around me, I have everything I need all within a few steps.

We booked another cruise this week so we have something to look forward to but all the accessible rooms were already booked. We took our chances and booked a regular room but after the week I've had, we're worried about how we'll manage so we might have to reconsider, which would be very disappointing for both of us. 

So that's enough about MND, it's all so boring and depressing isn't it? So let's talk about the good things in my life.

My daughter Anna came down from London and stayed over. I hadn't seen her since Christmas so it was lovely to see her.

She told me her training for the Brighton half marathon in March is going well. She's running for the MNDA and we are going to go and support her on the day. It will be emotional for both of us, as the last time we ran together in 2022, it was her first half marathon and my last. It was so nice to catch up with her busy London life, and she loved playing with Teddy. She's happy, so I'm happy.

Alice and I were invited to a party by Simon, who ran 5k every day last year for a Parkinson's charity. He asked for anyone to add their name to his calendar, and he would go and run with them for company and to raise awareness. Alice and I joined him one summer evening around Southampton Common and he invited all those that had run with him to celebrate raising £20,000! While there, we met Carlo, known to the Southampton running community as the Cookie Monster. Since his dad died of MND 10 years ago, he has run marathons dressed as the Sesame Street character, raising money and awareness. He was a really nice guy and he wants to push me around a parkrun sometime.

We travelled up to Kingston for a parkrun along the Thames towpath and although a little bumpy at times, it was a beautiful location. It was also very cold, so while all the runners were exercising themselves warm, I had my thermals, dry robe, hat, gloves, and a blanket to keep me warm as Alice sped through the cold air. Oh, did I forget to mention my heated gilet and socks as well? I was lovely and toasty!

We went to the re-arranged MND Christmas party for our Southampton group, after storm Darragh in December put a hold on festivities. It was nice to meet quite a few people that we haven't seen before, and to catch up with those that we have become close to since my diagnosis. 

I did another DJ set at the Open Decks night and the person before me didn't show so I got 90 minutes instead of 60. I asked Alice to accompany me at the Decks as I sit on a stool now, and my hands are not very dextrous. We had a good laugh playing the records between us, and she's agreed to be my full-time assistant. I'm DJ Tintin, so she has got to be ... Snowy!

I had a lovely end to week my too. 

A meet up with my musical brothers Paul, Duncan, Mark, Carl, and Guy, is always great as we've known each other for so long, and have always been there for each other. So to still be together and laughing 40 years after the band was formed is really something special. 

I'm now looking forward to a trip to my beloved Isle to see my family, so more exciting, and enthralling tales next time! 

However, the news that I'm sure you all want to hear, is that Teddy the naughty cat, isn't naughty any more! We don't know why, but in the last week, he has started to jump up onto our laps, and while we brush and stroke him, he does paddypaws then falls asleep! He has never done that in the 5 months that we have had him, and we are so pleased. He's a rescue and we don't know how bad his first few years were, but he is very wary of strangers and after a few strokes would turn his head and try to nip us. Maybe he has learnt to trust us and although I'm sure he will still have his moments, we are enjoying the new Teddy.

On the fundraising front, there are now 4 people who are running 31 miles in January for the MNDA, so thank you to Rachel, Andy, Colin, and Phil, you are nearly at the finish line!

Thanks also to Anna who is training for her half, and to Anja, Fiona, and Penny, who are all running the London marathon in April for the MNDA. Alice and I have registered to be part of the MND support group out on the course, so we will be with you through the pain and the ecstasy of running a marathon, that we both know all about. 

Alice and I have been asked by Southampton Hospitals Charity, if we would run the Southampton 10k this year as advocates for inclusion in sports and the organisers of the Southampton Running Weekend were keen for us to take part.

We took the opportunity to try out our new hospital charity running tops on Saturday at parkrun. It was so busy with 1200 people taking part, we had to queue to get over the finish line! We had also received a gift in the post from Martin, who made my wheelchair. Some green padding to fit with our vegan runners club colours. Unfortunately, it turns out Alice has put them on the wrong way - d'oh! But they looked the part all the same. 

We then got chatting to a guy called Rob, who we've spoken to before. His dad died of MND and it sounds like things were so different back then. His dad had lost his voice and couldn't communicate. We told him about my voice banking and even showed him the SpeakUnique app Alice has on her phone and made it say a few sentences in my voice. Rob couldn't believe it! Whilst we still don't have a cure, there are technologies that have come on to make life easier.

We then went on for breakfast with friends but had to park a couple of roads away. I was holding tight to Alice with one arm and stick in another but halfway there, my legs lost all power and I thought I'd fall. Alice had to hold me up while I recovered and took a minute to compose myself. I made it, but it was scary. Eating breakfast was no easier. I was struggling to cut up my food and Alice could see how hard it was so offered to take over. We were with friends so I was reluctant, but I just couldn't do it myself so gave in. No-one batted an eyelid while Alice prepared my food - I guess the first time is always the hardest. 

The Southampton 10k race website have published an article about my journey from a fit marathon runner to being wheelchair bound, and our running story since my diagnosis. They even used me as a poster boy in their promotion, although they unfortunately cropped Alice's face out of the photo - a la Mike Wazowski in Monsters, Inc.!

You can read the article here:

Southampton 10k article

I had no idea that Alice had given them an interview, and when I read what she had written, I had tears in my eyes. It was so sad, but beautiful. MND is not fun, but Alice and I are making it as bearable and enjoyable as we can, and I wouldn't want to spend my last few years with anyone else.