23/11/2025 - 'Walk with me' by David

Now that Halloween and bonfire night has passed, is it okay to talk about Christmas yet? 

You'll all be excited and relieved I'm sure, to hear that we've bought this year's Christmas jigsaw. As usual, it had to include Father Christmas, and it does. Unfortunately, due my rubbish hands, we've had to order a 500 piece instead of the usual 1000, but it will take us half the time right?

Regarding my muscle wastage, I had my latest neurological appointment, but for whatever reason neither my consultant, or my MND nurse were available. So we saw another doctor and nurse. We mentioned that things are becoming harder at home and that we have applied for assistance through social services and they're going to discuss my care needs at their next MDT meeting to see what help I could get / need. We also told them about the feeding PEG infections I keep getting, so we are being referred back to the gastro department to discuss removing or re-siting it. He examined me for limb strength and said that my legs are still quite strong considering, but that my hips are weak which is why I can no longer walk. My arms and hands are also weak, and I've noticed more cramps in my fingers recently. After looking into my mouth, he said that he could see fasciculations in my tongue, which was disappointing as that is the first time that this has been mentioned. I must admit that I can feel something just starting in my mouth. We left with mixed feelings. 

Alice went back to work and I came home on the bus but unfortunately the automatic front door didn't work, and because the manual key is in a key safe within an outside cupboard, I couldn't get out of my chair to reach it. I rang Alice at work and we tried to work out what to do and decided i would ask next door but again, I couldn't get up the step to their front door. Luckily, I had a back scratcher with me that I use to stroke Teddy, as I can't reach down to him anymore, so I used that to knock the door, and my neighbour Becky came out, got the key and let me in, all while Alice stayed on the line to make sure I was ok - Life isn't easy. 

My power chair gives me the option of getting out of the house independently, and I travelled over to the island on what would have been my dad's 93rd birthday, and my mum, my sister Lois, my daughter Rachel, her hubby Max, and I visited his tree at the woodland burial. His Rowan tree is looking healthy with buds and berries, and we laid some roses, and planted some winter cyclamen on the grave.

Three years gone, but we still remember him so fondly.

I also caught the bus into Southampton to meet Rachel for some daddy/daughter time, which included shopping, lunch and a natter.

It was warm enough to sit in the park, and we sat on a bench and watched the tame squirrels, eating out of people's hands. It was nice to spend time with just the two of us, and we plan to meet up again in town, when the Christmas market is open. We might even invite Alice and Max next time. 

Thank you to my former boss Kerry, for organising an international food buffet in aid of the MNDA at the hospital recently. It was her parting gift to us as she is moving to a new research post at Southampton university. The donations in exchange for food from around the world, were in excess of £100.

Thanks also to Anne and Simon for a £50 donation to our JustGiving page. We don't know them, but they commented that they had seen us on the telly, and that it was a worthwhile cause, so thank you both. 

And on the fundraising front, we joined over 100 people for our third Walk With Me For MND - The Extra Mile. An event that Alice and I set up to encourage walkers, wheelchairs, dogs, and children to join us in walking the gorgeous seafront between Cowes and Gurnard on the Isle of Wight - a route I ran a thousand times, training for football games, triathlons, and marathons in the 80's and 90's. 

The first year we did this event in 2023, I was able to walk very well. In 2024, Alice pushed me in my chair and this year, I zipped along in my power chair. I was pleased to see 'Big John' there - a man from the island with MND I had first met a couple of months ago. I was also pleased to see he was still able to walk the mile with the help of his sticks.

Nearly £1000 was raised, so thank you to Doreen for organising, and Rob for the coffee and cake at the end. People always ask if we could change the date from November to a warmer month, but Alice and I always say that an hour in the wind and rain compared to what we are going through every day of the year, is not too much to put up with. It didn't actually rain this year, but it was cold! 

My old car, Zippy the 2CV even made an appearance!  I spotted the car from across the road and exclaimed to Alice 'look a 2CV' and then realised it was MY old 2CV!

I have become friends with Rachel and Stephen, the couple who bought him from us, and they have smartened him up and renamed him Red Ted (as the registration ends in TDE). We were so pleased to hear this as we replaced their new Ted for our own Ted the cat - the stars aligned there. They've done lots of work giving Red Ted a makeover including new soft top, bumpers and wheel trims.

It was lovely to see the three of them and they joined us for the walk (not Zippy/Red Ted/Teddy obvs). 

Looking after myself while Alice is out is becoming harder, and I know that at some point I will drop a cup of coffee, or a plate of food, or fall to the floor while transferring. The cramps in my hands mean that picking up things between my thumb and forefinger is virtually impossible. My riser recliner chair stopped working the other day and I was stuck to that spot until Alice returned as I couldn't get out of it on my own without it being in the standing position. Luckily, it was just two hours and I didn't need the toilet, but if I fell, or if it had broken just after she had left for the day, it would have been seven hours. A few hasty phone calls got us through to the company who provided the chair and luckily, despite being after 4pm on a Friday, they sent a man out within the hour. He found the problem but didn't have all the bits to fix it so scheduled another visit for the following Saturday morning.

Alice was out at parkrun when the guy came to finish fixing the chair, and because it was raining I had decided not to go with her. When he knocked on the door, I was still in bed, and without Alice it took me a few minutes to struggle into my chair and to the door. Luckily, he had waited and by the time Alice was home, my chair was fixed but I was unable to get dressed so she found me in just a pair of PJ bottoms and not much else. 

We have to do a fair bit of problem solving and trying to find ways of making life easier. This week's challenge was to find a way to shut the kitchen window in the afternoon to keep Teddy in. He's ok in the morning coming and going regularly but as soon as it's dark (and that's very early now!), he likes to stay out for hours hunting and Alice can get worried when he can't be found. This is also peak time for him bringing in furry gifts which are not welcomed! Unfortunately though, there's no way I can either reach the window nor have the strength to pull it shut but Alice (with some hive mind thinking from her work team), came up with the idea of using a long tie on the handle with a loop on the end I can put around my wheelchair arm rest. Once looped over, I can reverse my chair and voila!, the window shuts. So far, so good.

It was carers' rights day recently, and Alice went to a Christmas wreath making class Thursday evening, and a fayre on Friday to meet charity groups, organisations offering help, and fellow carers. It enabled her to speak to social services to ask about their care provision and chase up our referral. As she had taken the day off to go, it also gave her the chance to have some time to herself as she walked the 4.5 miles to the event and then did some Christmas shopping.

Unfortunately, the dark clouds descended again, and I didn't leave the house for seven days before yesterday. I didn't have any hospital appointments and the weather was cold and wet, so I spent every day in my riser recliner with the fire on. Watching, listening, munching, and snoozing. I couldn't get to the monthly lunchtime MNDA support group meeting as Alice was at work. Now she's back to 5 days a week in order to get me up in the morning, getting there under my own steam would have seen me getting 3 buses, so that was a shame.

I would like to think that I've always managed to stay happy and healthy, so these last few years have seen a change in my mood, understandably. It's a weird feeling because I don't want to be unhappy, and in many ways I think I'm very lucky, but it just sort of consumes me. I also feel more prone to mood swings these days and with Alice also feeling the strain, it's only natural that this has a knock on effect on our relationship. We're very close, we love and support each other but we've also been snippy with each other recently. We both understand each other's struggles but neither can help the other out of their own situation. 

Alice looks after all my needs at home, and I have lots of support from friends and I speak to my brother Richard every week which is nice. We talk about football and music predominantly, and I'm meeting up with him and other friends from our younger days soon for a beer or three and a meal at an Indian restaurant. I'm looking forward to that and a few other nice things planned, so I know that I'm well loved and have lots to look forward to. 

And in case you're wondering, I have now been out of the house to have lunch with our friends David R, Freya and Andy. Alice and I caught the bus into town so I could have a gingerbread latte, hog-free hog roast with faux crackling and a piece of treacle tart, and we had a great laugh with everyone.

It's just what we needed and we left feeling rejuvenated, just in time for a new week.