I HAVE MOTOR NEURONE DISEASE

ABOUT ME

I’m Mike, aged 42, I live with my amazing partner Becky and the meaning of my life, my son Freddie. I used to play rugby, I now prefer golf. I like going on warm holidays, prefer a pool to a beach (unless the sand is white). I’m self-employed and my business is in good shape but I’m always thinking of ways to wind it down. I have Motor Neurone Disease / ALS but I am going to fight like f**k against it.

ABOUT MY CHALLENGE

I was officially diagnosed on October 4th 2016 although the ‘start date’ has been put back to March 2016. Realistically looking back I started to notice weakness back in summer 2014. My diagnosis came early  which is lucky I guess and it all started with a twitch in my shoulder that wouldn’t budge.

RAISING MONEY – RAISING AWARENESS

There is unlikely to ever be a cure for ALS but specialists are convinced they will be able to manage it and extend the life expectancy considerably. They can only do that with research and that needs funding. I’m trying to raise £25,000 towards this. I’ll be posting details soon.

ABOUT THIS BLOG

I wanted to start it, partly as a bit of personal therapy, and to form some sort of digital legacy but mainly so that others with this disease can compare an contrast my symptoms and experiences. I know when I was first diagnosed I wanted to know what was going to happen to me and how quickly – so if you have MND and are reading this, please feel free to get in touch… (we’re known as PALS People with ALS).

Now, even though this might upset my mum, this blog will contain some swearing, not a lot, but when your time is short and something pisses me off why should I hold back – I won’t have the advantage of being a miserable old man so I’m getting it in early!

This blog won’t contain much science, there are better sources for that and the MNDA website is outstanding for information, so this will be about my progress with this disease, topics of interest (like assisted death), latest gadgets, the difficulties I have, so when you’re feeling hard done by because someone cut you up at the lights or ate the last piece of pizza, it might help you regain some perspective.

MND / ALS – THE BASICS

The Motor Neurone Disease Association website is an outstanding source of information and I have provided a couple of links to make it easy. The explanation below is taken from their website…

MND / ALS is a progressive neurodegenerative disease that attacks the upper and lower motor neurones.

Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing.

The muscles first affected tend to be those in the hands, feet and mouth, dependent on which type of the disease you are diagnosed with.

MND / ALS Facts & Figures

Risk of developing MND is up to 1 in 300
People diagnosed every day with MND
Adults have MND in the UK at any one time
50% of people with with MND die within 3 years of diagnosis

From the Blog

Spring madness

Remember when I said I wouldn’t leave it so long to write, well that was a load of rubbish because it’s been over two months! Even my dad has been telling me I’m lazy so here goes. Grab a seat, get comfy, as this might take a while, the last three months have been crazy.

Italy v England

As I have mentioned before Becky’s job affords me some unique opportunities in this case a trip to my favourite European capital Rome to watch England take on Italy in their opening Six Nations match. Not only were we hosted at several restaurants off the tourist track but I also got to sample the match-day hospitality and spent a lovely afternoon chewing the cud with Cooch.

The only downside was my stupid decision to join the masses at the Colosseum on a day when it is free to get in and is therefore rammed. I also forgot that Romans might not think handrails are a necessity when walking down steps – quite frankly it’s a miracle I didn’t fall over. I’m also grateful to the taxi drivers who despite looking at me a little strangely, dug into my trouser pocket for their fare!

If you’ve never been to Rome make sure it’s on your bucket list and if you can combine it with rugby, well that’s even better.

Alex Chalk meeting

As part of my ongoing support of MND Gloucestershire I was asked to attend a meeting with Cheltenham MP Alex Chalk to discuss the campaign to scrap benefit reassessments for people with MND and other terminal illnesses. I even made it onto page 24 of the MND’s thumbprint magazine.

Mardi Gras Charity Ball

Once again my brother and sister in law (Marc and Jacqui) combined to put on an amazing Charity Ball down in Bridgwater. With over 200 in attendance, the raffle and auction raised £6800 which included a donation of £2500 from Santander.

Scotland v England

And so begins an insane busy period of sporting events even by my standards. Rather than our usual biannual trip to Paris we decided to head north of the border to Murrayfield, a stadium few of my group of friends have been to. 8 blokes in four cars left at the crack of dawn which meant we arrived in Edinburgh at 10am and of course in the pub by 11. We had a fantastic afternoon, including a civilised lunch, and despite the poor performance and result we had a great night. And oh how we enjoyed the banter from those smug Scots!

 

Man Utd v Liverpool

Russell (Becky’s brother) just so happened to speak to the chief exec of Manchester United, Ed Woodward’s Godfather, who amazingly arranged for me and my brother to watch Man United v Liverpool at Old Trafford. If that wasn’t enough the package included hospitality at their Premier location Number 7. We enjoyed a fantastic weekend (not so much Marc because Liverpool lost) and was certainly a once in a lifetime experience. I’m pleased to say Man Utd hospitality trumps Real Madrid.

 

Race Week

I love race week and barring a one-year hiatus I have been every year for the last 20 years. This year we took advantage of pre-race hospitality at Hunting Butts farm, just across the road from the racecourse (a huge thanks to Sam and Sarah Hanks for hosting us). Once again we took advantage of Becky’s hospitality and grabbed the chance to rest my weary legs and warm up in one of Becky’s marquees.

As luck would have it an old school friend, Ian Atwood, invited a few of us up to his box in the new Princess Anne Stand, what an incredible view to watch a horse race.

And finally to round off a busy race week I joined the Mudway Workman table at Pete Buxton’s off-site hospitality venue. Pete generously made the MND Association and Pain in the ALS his chosen charity for the auction and raised valuable funds for both.

 

England v Ireland

Not one to sit down and put my feet up I hotfooted it straight from race week down to Twickenham to join in Becky’s companies final Six Nations hospitality. In bitterly cold weather, with snow on the ground the walk from Twickenham centre to the hospitality marquee was treacherous and freezing and once I was in the marquee I didn’t leave.

I am fortunate to have met many of the agents, guests and hostesses over the last 4 years so it was great to catch up with them at their end of era party.

Viva Las Vegas

Like most stories from Las Vegas they should remain private but I am so grateful to everyone who made the effort to accompany me on this trip of a lifetime and I have so many fantastic memories to take away. Ask anyone who went, their stories will be different but equally fantastic.

If I was being sentimental I would say the helicopter trip to the Grand Canyon with Shaun and Nobby was a highlight and even more so the welcome and goodbye from my Maori friend Kramer who performed a personalised Haka in the hotel lobby and airport departure lounge. People have asked if I know what it means, I can’t translate it, but I know what it means in my heart.  Kramer also gave me a Maori necklace, a Taonga (which means Treasure) something I can pass on to Freddie and the lads can tell him all about our trip.

Other highlights included being cruelly taken to a driving range knowing full well I can’t swing a club any more, a fantastic night at a piano bar where as a group we drank more than anyone in their history and what can only be described as an unbeatable Saturday where we were treated like Kings at the opening day of the Daylight Pool Party and then VIP access to the Hyde nightclub in the Bellagio (not a patch on the prom club though). Some of my favourite moments were in stretched Hummer limos, designed to take 10, but crammed with 20.

Eye Eye

You may be aware from previous blogs that I was trying to secure laser eye surgery via the NHS as both myself and my consultant thought it was a very useful idea. You will also recall a number of friends running fundraising events to enable me to get a step closer to doing it privately.  I decided to take the plunge shortly after returning from Vegas and a week after my initial consultation I was on the operating table getting my eyes done.

The affect was immediate and the stinging short lived and I am so happy that I have had it done. It has already has made my daily life easier and safer. Particularly as I was near unable to even put my glasses on without difficulty. I drove a hard bargain at Optical Express in Cheltenham and as a result agreed to do some PR work with them about how it has changed my life

AP McCoy v Cheltenham Legends

Myself, Mudders and Pitters were invited to Cheltenham Town Football Club to watch an AP McCoy team take on a Cheltenham legends team by former Cheltenham coach Pete Kennedy. It was a great surprise to be invited to meet AP himself and also trainer Paul Nichols during our hospitality.

 

Making More Memories

And finally to wrap up an incredible spring Becky, Freddie and I took a well-deserved break to an all-inclusive in Crete where the memories of Freddie laughing, playing and being generally lush will last me a lifetime. My only wish is that a has been a little more relaxing for Becky but unfortunately she has the two of us to look after and I’m not any use at putting on suncream, or carrying a plate of food or beer. You won’t see any pictures of me swimming with Freddie because I can barely stay afloat without drowning but the warm weather and warm indoor pool certainly had a positive effect on my body so I hope this weather stays with us for a while.

 

MND Update

Sadly things have moved on all quite a bit since my last update and not in any good way. It is perhaps easier for me to take you through an average day which shows you the ups and downs of daily life. I don’t write this to receive any sympathy but it’s important that others and even those with MND reading this know what they might come up against.

I experience cramp, usually in my feet arches at several stages during the night which leads to broken sleep and multiple toilet trips. It’s a weird one because it’s difficult to stretch to overcome it and you just have to ride it out. I don’t look forward to getting up, when I stretch this leads to further cramp in my calves and more recently my hamstrings. Because I have lost muscle on my shoulders they ache and feel like they are collapsing into my chest. My fingers are clenched tight in a fist and I long for the days when I could hold my hands out flat. They are now permanently curled over and I can’t flatten at all.  I often try and sit on my hands just to give the fingers some relief.

I don’t have the core strength to sit up in bed so I have to rock myself up, sometimes this takes a push or a pull from Becky. My first tentative steps are very wobbly but I could write a whole chapter about my walk so I’ll come back to that.

I can still just about turn the shower on but I can no longer wash myself properly. My hands won’t reach my head nor my armpits so Becky has to help with that. She has quickly learnt not to bother getting fully dressed as she often ends up soaked. I can’t dry myself either so Becky again does this part and we now have it down to a fine art. I can’t squeeze the deodorant so Becky has to do that and I can’t squeeze the toothpaste either and more recently I can’t push the button on my electric toothbrush (and don’t have the coordination for a regular old toothbrush). I can’t shave either, but Becks is now a dab hand at this although she does get carried away and has knicked me a few times!  She then has to dress me as I can’t even pull up my own pants anymore nor put on a pair of socks although I have upgraded to some shoes without laces which makes life easier.

I have to fight for Beckys attention with Freddie as he needs to get dressed too. Becky makes us both breakfast as I can’t fill a kettle and have flooded the kitchen trying to pour a hot cup of tea before now.

I hope you can see the obvious theme developing here. Becky… she is truly amazing and so patient. The next time you see her, give her a hug, buy her a coffee or wine, she deserves so much more than the hand she has been dealt.

We have a lot of work going on at home so I am using my home office more, however when I do need to leave the house, driving throws up a whole new set of issues, that said driving is actually pretty uncomplicated.

My new car allows me to unlock it with a thumb or in my case knuckle and the electric seats make it easier for me to get in and out. I battled for a long time with seat belts, often taking up to 10 minutes to put on. I have since received a seat belt exemption which has certainly made my journeys a lot quicker. I have a knob on my steering wheel and a little panel of controls near my left leg so for now I am at least independently mobile and I can still enjoying taking Freddie to nursery.

Through the Access To Work scheme, I now have a number of aids which are supposed to help me stay in work longer but I am yet to find a mouse that will work well enough and prevent me from clicking the wrong thing constantly. Even my voice activation software is starting to let me down as I slur many words and correcting them is difficult because my ability to type is very limited. My left hand quivers violently when I try and use it, even with an elbow support, so I’m back to one finger typing and even that bloody finger is curled over !

Becky has to prepare dinner for us as I can’t really get stuff out the fridge, certainly can’t open packages and wielding a sharp knife is quite frankly dangerous. Becky also has to cut my food for me so that I can stab my food with my fork. I also have a special bowl with a rim which helps me scoop food onto a spoon. Sometimes I’m just too exhausted and it leads me to become very frustrated and leave food even though I’m still hungry. Occasionally I ask Becky to load a fork or even feed me because I have to keep my weight on.

A particular frustration is not being able to get down on the floor and play with Freddie. He knows something is different because often offers to help me, he goes and gets his chair for me or says “Daddy can’t do it”. Sometimes I feel like such a failure as a father. I can’t pick him up, I can’t dress him or change his nappy and I only really get a cuddle when I’m sat down, I can’t read him a story when he’s sat on my lap as I can’t turn the pages. Fuck you MND

As I mentioned my walking and general balance has deteriorated exponentially since the New Year. Where as I walked for 10 miles a day around New York and 5 miles a day around Madrid I’m really not confident in walking more than 100m unaided. I’ve tried a walking stick but don’t have the strength to hold onto it and I am hoping that an imminent appointment to the physio might improve things. I have also been for a wheelchair assessment because they can take so long to build and order but I refused to sit in Electric wheelchair, I don’t know why, I just refuse to give in. However this does mean that the number of accidents I have had has increased.

I have fallen down the stairs twice and topple over quite regularly in the house but it wasn’t in until holiday that I fell over in public. The first was where I caught my shoe on a pebble and when down on my side with nothing more than a bruised ankle, shoulder and ego. On the last day however I came a real cropper tripping while walking down a ramp and bruising my ribs, cutting my eye and having to make use of the hotel doctor.

Common sense would say to use a walking aid like a rollator or frame or even a chair but I refuse to give in.

Fundraising

Friends continue to fundraise for us, Freddie and MND and we just can’t thank you all enough!

ZUMBATHON – Hayley Roddwell organised an amazing day in April and raised £2,700 for her efforts. Thanks to all of those that took part.

A reminder that my brother in law Lee Moyle is rowing the River Wye please support him here on his Go-fund me page

Our friends Karen & James Radford are hosting an afternoon Garden Party on Sunday 20th May..for more details contact me or email partybrookhousefarm@gmail.com

 

Thanks for reading – I’ll be back soon. 

New Year, New York, New House, New Car

The morning I started writing this blog was one filled with mixed emotions. Firstly happiness as Freddie had slept in till 7.45 and then we had such fun playing with his cars and toys. But then for the first time in a while it hit me as to how a fucking unfair MND is and that my ability to play with my son decreases every week. And while I try to treasure every moment with him, life, work and other everyday crap often gets in the way. That said, it’s easy to forget my own worries, when he bumped his head and asked me for a cuddle. I’ll take that any day of the week.

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Unexpected adventures

Its been a quiet month / 6 Weeks (by my standards at least!) although as I sit and type I realise it has been full of little bits and some unexpected adventures. Winter is tough for me. Shorts are no longer an option (because I’m not a postman) and pulling up trousers is hard on my own, tucking in shirts.. impossible, jumpers get stuck around my chest and I can’t put gloves on by myself. I’ve been outside my hands get really cold and useless which makes emergency toilet trips a 2 man job! So if you see me struggling, please offer your help. Other than that, I quite like winter and Christmas with Freddie this year will be magical.
Cover photo by Rob Wheatman

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