21/07/2025 - '2 years on' by David

One of the things that I had always wanted to do throughout my life, was to walk the beautiful, scenic and rugged coastal path of the Isle of Wight. I remember many family walks after school or at weekends over the downs and forests, and usually to gather fruit or flowers for dad's awful home made wine. Gorse, quince, dandelion even! 

I always fancied walking the 70 mile coastal route around the island and Alice and I had planned to walk it in our retirement, over a week, staying in hotels or B&B's on our way around, but unfortunately, my MND diagnosis scuppered that plan. 

Prior to my diagnosis, Alice and I had completed many inland walks using the book that my parents had used, and we added our comments the to those that they had written twenty years previously. Some signposts and paths had changed over the years which made it more like orienteering at times, but it was a pub walking guide so they all ended well with a meal or a drink. 

In 2023 after my diagnosis, I thought back to all the walks that I have done, over the years as a child and as an adult, and I realised that I had already walked over half of the coastal path. My goal then became to complete this adventure while I was still able to do so. 

Alice and I completed the walk in three stages over a few months, from Thorness to Yarmouth, from St Helens to Ryde and finally from Ryde to East Cowes. We were joined by our lovely friends Guy, Neil, Julie and Caroline, and we celebrated our finish with a drink at the White Hart pub in East Cowes before boarding 'the binky bonky' (floating bridge) back to Cowes. I used walking poles, and had to be helped over the many stiles, but I was happy to finally complete my goal.

The reason that I'm mentioning this now, is that I have decided to give in to the wheelchair full-time as my legs aren't strong enough to walk more than a few metres without trying to give way. I would rather stop now, than fall in the street. 

This week marked two years since we were given the awful news that has changed our lives forever, and on that day I was worried that I wouldn't be able to walk my daughter down the aisle nine months later. Well I did, and I'm still able to get from a car to a restaurant with Alice's help, so I'm very pleased that I have got to this point before succumbing to the wheelchair. 

I don't feel any numbness or loss of feeling in my legs, it's just the muscle wastage, and lack of strength that doesn't enable me to walk with any certainty and I have to hold on to something or sit down frequently.

I'm absolutely fine with my new mode of transport. I've got used to my power chair, using it both inside and out, and infact it's made things easier to look after myself while Alice is at work, as I zip around the kitchen, to the loo, to my chair, and outside for a coffee in the sunshine. 

It's a bit strange, because I remember feeling embarrassed when I first used the rollator outside, or the first time Alice had to cut my food, or being fed in public, but I've never had a problem with being pushed in a wheelchair, so I'm quite happy to do things sitting down, and I'm raring to get those wheels turning. 

Every morning, as well as filling up the coffee machine, putting my breakfast things out, and feeding Teddy, one of Alice's jobs is to put my chair at the bottom of the stairs, so that when I rise and shuffle down, I have my chariot waiting. Unfortunately one day last week she forgot, and I had to somehow get from through the hall and to the other end of my new bedroom, where Zippy was charging. I'm not confident enough with just a stick anymore, so I had to think of another way to get to my chair. After a couple of minutes, I decided on folding over the throw from the sofa and shuffling along the tiled floor on my hands and knees, which worked well although it took a while as I haven't got much power in either hands or legs. The next problem was that my new room has a textured floor for stability with a walking frame or wheelchair, and I couldn't slide any more. I went for the lying on my back, on the throw and shuffle backwards on my bum approach. By this time, I was getting hot so I took my shirt off and I was also getting weaker by the minute. I was talking out loud to encourage myself along, and I felt like that bloke in the film, who had to cut his own arm off in the mountains, to free himself from a rock to escape and cheat death. I'm aware that this wasn't a life or death situation, as I could phone Alice, or at the very worst, I could just lie there until she came home, but I was relieved, and quite proud of myself as I got to the chair and managed to pull myself up between the handrails and the wall up to a sitting position in a sweaty mess. I've started work on the screenplay already. 

There's a saying 'you find out who your friends are' and this has certainly been true. Whilst this phrase is mostly used in the negative, we've had nothing but positivity. People are just so kind to us, from giving us lifts or offering Alice hours of respite, to our work colleagues who haven't forgotten me and still invite me to their socials. Alice's manager constantly supports her with her hours and managing my appointments and just this week, we've enjoyed some lovely meals prepared by the Robinsons which has enabled Alice to have evenings off cooking.

My friend Rachel also dropped off some meals and veggies from her allotment this week.  We really do appreciate all our lovely friends. 

 

Two of our running friends Ruth and Conrad are preparing to walk the Wainwright Coast to Coast challenge in August walking 192 miles from St Bees on the west coast through three national parks to Robin Hood's Bay on the east coast. They are raising money for my MND support group that we attend twice a month, and have benefitted from emotionally and financially, so I would like to thank them and wish them luck. My friend Steve on the Isle of Wight is holding a cycle jumble in aid of the MNDA soon so thanks to him also.

Speaking of the island, Alice and I travelled over for a couple of days to attend two more events in our busy calendar. 

The first was a 50th anniversary celebration for the first football club I played for as a child, Gurnard Youth, and they very kindly had a bucket collection for the local MNDA and they raised £200! There was a short football match featuring the original squad of which I and my brother Rich were part of.

Alice pushed me onto the pitch and I kicked off the game from my wheelchair, which I was pleased to do. 

The next evening, we were guests at my mum's WI group meeting as they had chosen the MNDA as their annual charity over the last year, and they handed us a cheque for £400, which is an amazing amount. Doreen, who volunteers for the MNDA accepted the cheque, and Alice and I gave a short talk about our lives living with motor neurone disease. One of the questions which we were asked, was one that I've been asked before. Was I in any pain with MND? I was happy to tell them that apart from the cramps in my fingers, and the aches in my legs, I really don't feel any pain, and with my new power chair, and our house adaptions, I'm a very happy man. We know that things are definitely going to get worse in the future, but we were able to say that we are enjoying a really good life despite my diagnosis. 

We had some good news recently when we found out that we are entitled to Employment and Support Allowance (ESA) as well as the PIP we already receive. We had assumed that PIP was the replacement for my income but it turns out PIP is more of an allowance to help me live day to day. As I'm not old enough for my state pension, I'm actually classed as unemployed so entitled to this additional benefit. It's a bit annoying we didn't learn about this a year ago but the process of applying was quick and easy and they granted me a couple of months back pay. Alice was particularly pleased to know our claim was successful as this means she can cut one day a week and be no worse off. She's planning on starting this after our holiday and can use this time for resting or getting things done in the day instead of after work. 

We had our quarterly appointment with our MND consultant and MND care co-ordinator, and all four of us in the room were happy with my progress. I said that I have had my feeding tube fitted, had our house adaptions completed, and was now virtually wheelchair bound, but two years after diagnosis, I'm still talking, eating, and smiling, so we continue forward, until we can't.

FAO my running friends - parkrun update incoming.

FAO my non running friends - look away now. 

Since the last blog we have run at Southampton and Upton House. At Southampton Alice pushed me to another course PB on their new route. We saw four people wearing orange and blue mnd running tops and we managed to speak to and thank all of them.

Upton Court near Poole, was a very scenic, undulating gravel path through woods, and fields, and included one killer hill that pushed Alice to her limits, but she made it up and over and I finished my 199th parkrun with my 16th category record. We really enjoyed the course and everyone was so friendly, as the parkrun community always is. We got chatting to a couple of runners on the way to the start, and the run director came and chatted while we waited for the off, and then gave us a shout out in the briefing. Following the encouraging cries out on the course, we were welcomed in to the finish funnel by a lady dancing to music. We'll definitely return. 

That's the running talk out of the way...nearly. We had entered the Southampton Airport 5am start 5k for the Hampshire and Isle of Wight Air Ambulance months ago and set our alarm for 3.30am. On waking to the torrential rain on the window, we decided against it and turned over for a lie in. We felt the FOMO the next morning but there's always next year.

We finished the week with a lovely surprise. Both my daughters came to visit, accompanied by their beaux (yes that is the plural of beau, I checked with the Cambridge dictionary). It was lovely to see them all and we spent time in the garden, played some vinyl, and had a cheeky gin and a photo before they left for London and the island. 

Alice and I didn't celebrate the second anniversary of having being handed a terminal diagnosis, but we certainly didn't grieve either. I am very happy with the rate of progression, and I'm aware that not all motor neurone disease sufferers have neither the time I've been given, or the love that I feel. More musings soon x