26/11/2023 - 'What is MND and what does it feel like?' by David

Recently, the blog has been about exciting travels, reunions, concerts, meals out and parties, and long may that continue as Alice and I make the most of my mobility and my time. This week though, I thought I would explain a little about motor meurone disease and describe how the daily life of someone living with MND actually feels. 

I have spinal onset amyotrophic lateral sclerosis (ALS) MND, known as Lou Gehrig's disease in America, a painless but ultimately, terminal disease. 

MND is life-shortening and there is no cure. Although the disease will progress, symptoms can be managed to help achieve the best possible quality of life. MND affects up to 5,000 adults in the UK at any one time. MND is very rare with only a 0.3% risk of getting it across a lifetime. It can affect adults of any age, but is more likely to affect people over 50.

I am grateful that I don't have something like an inoperable cancer with all the painful treatments that are associated with such a horrible condition, but though my diagnosis is less painful, it is no less serious. 

My symptoms so far, are limb fatigue,  cramps, twitches, and aches, as my legs and hands are weakening monthly, if not weekly. The best way I can describe the twitches, or fasciculations to give them their medical definition, is that it feels like there are insects running up and down my leg, under the skin. Obviously, that would terrifying, and because I know exactly what it is, I'm not worried by it, but it is quite weird. The twitches, cramps and aches, are the result of the motor neurons in the brain not sending the right messages to my muscles, so the muscles get confused, and over time deteriorate and basically give up.

Perhaps more worrying than my legs though, is the fact that I am losing the strength and dexterity in my hands. I will be able to live an active and useful life while in a wheelchair, but if I can't use my hands, then I really will be at the mercy of others. It's not until you lose function in your hands, that you realise how much you need them. At the moment, opening jars, shoelaces, buttons, writing and holding my phone for long periods are becoming problematic, and as a trained chef, who likes to potter about in the kitchen, chopping, slicing, paring and stirring, is becoming frustratingly harder. If I could choose for either my legs or hands to go first, I would definitely choose my pins over my paws! 

I am taking Riluzole, the only drug available to me that slows down the symptoms, but it will only give me extra months, not years. Alice and I are travelling to the John Radcliffe Hospital in Oxford on Monday to see an MND specialist consultant and also to discuss a potential research trial, which I'm eager to be part of.

I guess my pain is mostly mental, and coming to terms with everything associated with such totally devastating news is very hard. I looked after my body, through exercise and diet, for all of my life so that I would hopefully, live to a ripe old age, and be able to run around with my grandchildren. That pleasure, among many others has been taken from me, and it feels cruel. 

Sometimes, I lie awake in the middle of the night, thinking about my bad luck, contemplating my future, and the things that I won't be around to enjoy - World Cups, the Tour De France, hearing my favourite songs, Alice's sweet face, and obviously seeing any grandchildren that may come along. 

But as the sun rises, so does my mood, and I become thankful for all the things I have achieved, and eager to continue to enjoy life, while I am able to, so that is why Alice and I are packing so much into the days, weeks and months ahead. 

At 57 years, I am at the average age for this disease, and men are more susceptible to MND than women, so as the average life expectancy for ALS MND is 2-5 years, I want to tick off as much as I can from my bucket list.

There's lots more information on the MNDA website. Speaking of the MNDA, just this week we were awarded a cost of living grant to help pay the heating bills over the winter months and kind donations help to fund this so thank you. 

https://www.mndassociation.org/about-mnd

Now to the nice stuff! I made my Christmas cake this week and used the stove top method for the second year running. It's fruity and nutty and will go just lovely with a knob of cheese (it's a northern thing I've inherited from dad).

Our Just Giving page has reached £6000 which is totally amazing, and this blog has reached over 12,500 people worldwide. My story, and the importance of knowledge and awareness of MND is really being shared all over too! I have been asked by the UK Vegan Runners group to write an article for their newsletter, an Isle of Wight online newspaper has also asked if they could run a piece on me, the local MNDA newsletter will be featuring our 'walk with me' event and Vectis Radio have asked me back to follow up on my first interview that I did not long after my diagnosis.

Alice had a lovely email this week from Vegan Runners UK, asking if they could add the stripey socks that Alice and I have been wearing for a few years, to their official kit, and if they could sell them as Baker Socks in my honour, and donate part of the proceeds to Animal Free Research and the Countess Mountbatten Hospice in Hampshire. We of course were thrilled by this, and Alice and I are now on their website, looking resplendent in our green and black socks! In fact, they sold 17 pairs in the first 24 hours of going live!

On Saturday, we popped over to the island to continue our quest to walk the 67 mile coastal path. We walked from St Helens to Ryde which is 4.2 miles in beautiful winter sunshine, and we were again joined by Guy and Neil, but also their lovely partners Julie and Caroline, and Winnie the dog! Great stories and laughs. Beautiful sights and photos. Cold wind and warm faces. Sweets and two refreshment stops. 

We arrived in Ryde as darkness was encroaching, so we sought warmth at an exhibition of the history of IOW vinyl that friends of ours have created and many of my musical friends are either involved in or actually part of the exhibits. The island has a good history of musical talent from Craig Douglas, Brian Munro, The Choir and Level 42, through to the more recent sounds of Paul Armfield, The Bees, Champs, Grade 2, Plastic Mermaids, Lauran Hibberd, Coach Party, and Wet Leg.

I finished the week with a lovely hot Radox bubbly bath. I would have used Matey but apparently a man of 57 should start acting his age (which is a bit disappointing). I wouldn't normally document my bathroom habits, but the reason I mention this is that I know there will come a time when I can't climb in and out of a bath so I just lay back and stretched my aching, failing pins and it felt lovely!