The Importance of Good People

“It is a fair, even handed glorious adjustment of things that while there is infection in disease and sorrow, there is nothing in the world so irresistibly contagious as laughter and good-humour”

I never thought I would be writing and indeed quoting Charles Dickens’ Scrooge in my little blog but here we are and although my condition is not infectious, sorrow and laughter equally can be. I was dragged up on the best of British comedy, it is constantly coursing through my veins, it’s a part of my DNA a lot like my muscles-wasting condition quite literally is. There is also a saying that some people can laugh in the face of adversity and I have no choice and I actually enjoy it, it’s my challenge to see who wins, every single day, my weakening muscles and body or my sense of humour that challenges it.

An example of this was a couple of years ago on Christmas day when after spending time at the in-laws we had packed the car ready to go home and I slipped trying to get in the driver’s seat. It was raining and I had parked on the grass and I simply could not get back up and my wife was laughing her head off trying to figure out how to get me up and in the car. I cried too, with laughter, “just leave me here in the mud, I’m too fat to move”, eventually after a good few minutes we got my muddied, weakened body into the car both with tears rolling down our cheeks, these were good tears, we had won, albeit we were both absolutely filthy and knackered!

So, comedy and humour, some might say dark or twisted humour, is ingrained in me, it has been since day one. I was brought up on Monty Python, The Goon show, Carry On, anything written by John Sullivan, Porridge, Morecambe and Wise, Victoria Wood, Julie Walters, The Young Ones, French & Saunders, Desmond's, Bottom, Dudley Moore & Peter Cook, along with a whole host of stand-ups like Bruce Forsyth & Norman Wisdom at the London Palladium, Billy Connolly, Peter Kaye, Lee Evans anything at the BBC Apollo and even some influence from the other side of the water like Robin Williams, Richard Pryor, Bill Hicks and the list goes on.

I’ve absorbed all of these like a sponge, some of this subconsciously as my dad always listened to the Goon shows on the wireless in the kitchen, as he would Dudley Moore and Peter Cook but I loved it and I’ve used it to my advantage too when I’ve needed it most. I remember shortly after my diagnosis in a hospital in Oxford, the doctor had told us that this was a life-limiting, muscles-wasting condition and not much could be done but I was asked to undergo some tests in my underwear, which was pretty undignified because my body doesn’t look the same as others. Before these tests were carried out he asked if I minded if some student nurses came in to observe my movements when carrying out these exercises and everything else that was asked of me. I thought for a while and then realised that if I didn’t let them observe then there wouldn’t be any other chances to do this for anyone because this is such a rare disease, so if I let them as they were the medics of the future and could help someone else going forward. The students came into the room, about 12 of them, and instead of shy away and be scared and worried I ensured them that would never see another body like mine, that what they were about to see would impress them so much and that made me smile inside and made some of them smile on the outside too!

20 odd years later and I went to a football match and just so happened to meet comedian Jon Richardson and he said something like “I’ve read your blog, it’s great, if you ever want me to help out in any way then let me know, here’s my number…”. What Jon didn’t realise was that he’s a hero of mine as in my humble opinion he made one of the best Apollo appearances ever and here we have Mr Clean shoes, Mr La Dee Daa offering to help me (Link to that Apollo gig - The Apollo ).

I called Jon less than 5 minutes later asking him for help with something I had just dreamt up - if we could pull it off it would be amazing and he agreed to call me back on Tuesday evening. I thought I’d blow my chance because I’d jumped at the chance too quickly, but it turns out Jon did ring me back but unfortunately, I was watching ‘Saving Lives at Sea’ on BBC2 on a Tuesday evening, and I asked Jon if I could ring him back later. Was that my chance gone? Not at all, I called Jon back and suggested a BBC Apollo style of event where he could host and bring some of his friends from the comedy circuit along to the show - and the answer was yes!

Mid 2019 and I had the opportunity to be part of a comedy show with the UK’s best talent, a dream could come true. I needed a venue, and I desperately wanted the show to be in my hometown of Aylesbury. The venue was important to me because it would give me the opportunity to give family & friends a small token of my appreciation and gratitude for all their fundraising efforts over the years at the cost-effective price of a ticket.

Sometimes, when it comes to fundraising, I have the Midas touch, I don’t know how it happens and I cannot explain it, but doors open for me, things happen beyond my expectations, and I feel extremely lucky and grateful for that.

Later on that year I had been invited to a party in a pub garden and one of my former colleagues, Phil Chamberlain introduced me to his wife “Hey Martin, this is my wife Steph, Steph works at the Waterside Theatre in Aylesbury”. LIGHTBULB! After I sat down with Steph and explained my idea, I imagine she couldn’t believe it, it sounded impossible but my thought was what a gift to the town if we could pull this off. Steph kindly arranged a meeting with her boss Julie Chitty, and it was at that meeting that I knew I had just made some friends for life. Every question I asked Julie and Steph the answer was “Yes, yes, and yes!”

26th September 2019 I announced on social media that we would host a comedy gig at the Waterside Theatre, Aylesbury, 9th April 2020. ‘Jon Richardson & Friends’ was actually going to happen!

And then it wasn’t.

On 23rd of March 2020 we were all asked to stay at home and I was supposed to shield away from the world because I am a clinically vulnerable person. This went on for at least 18 months and in that time we were met with a harsh reality of my condition, shielding had left me still and static and with that I had lost the ability to walk, my body just deteriorated and I couldn’t help myself, I had felt utterly useless at this time, I suffered from a side-effect of Covid-19. Like always though that was not where I set my concentration, we were still fundraising during lockdown and up and down the UK we had people doing just that, albeit indoors. People climbing the equivalent of Mount Snowdon on their stairs, our friends at The Square Ball were playing Football Manager for 24hrs non-stop, Jon put on a gig on Instagram LIVE with his pal Russell Howard and I even appeared on Sky One with Jon and Russell, which was unbelievably surreal.

Let’s fast forward a bit and after many, many rearrangements were made we eventually got a firm, new date for the gig; March 27th, 2022. Jon Richardson & Friends consisted of Jon, Suzi Ruffell, Harry Hill, Marlon Davis and Russel Kane. With the amazing help from all the staff at Muscular Dystrophy UK, all the staff at the Waterside theatre and our fantastic comedians, the gig was finally upon us.

I met Jon at the theatre with my family and it wasn’t long before the other comedians arrived, and they were all so humble and would not take any thanks or praise. I was speaking with my colleague Debbie, and we were just strolling along the corridors of the theatre and suddenly I was on stage doing a sound check with Jon, Harry and Suzi. This I thought was crazy!

Sound Check!

We had a charity raffle table in the foyer of the theatre, and I wanted to go and check on our volunteers before the curtain went up and I was overwhelmed, I was stunned, and then elated by what I saw. Here were our heroes, our volunteers, our marathon runners, our mountain climbers, cyclists, swimmers and all-round fundraisers in family and friends from all over the UK, I didn’t have time to speak with everyone but for myself and Michelle it was a spectacle. I had been indoors for the best part of two years and the first proper time I had been out was here and now.

Some Hywoods Heroes!

Some more Hywoods Heroes!

It was now so much more than just a charity fundraiser, this was a celebration of family and friendship, and I was bursting with so many emotions, but I had to contain myself as I had promised to go on stage after the show, announce the raffle winners and close the show and this petrified me.

I never expected to do that. I always thought I would bottle it and pass the numbers to Jon to read out or just curl up in a ball in a corner of the theatre somewhere, but I remembered a quote from a family favourite film of ours… “You know, sometimes all you need is twenty seconds of insane courage. Just literally twenty seconds of embarrassing bravery. And I promise you, something great will come of it”. I cannot believe I did that, and I cannot thank my wife, Michelle, enough for being with me and giving me that courage.

20 seconds of courage

A huge thanks to everyone involved with what happened on March 27th, I’ll never forget it, it was sincerely one of the best things that has happened in my life. I actually took the stage with confidence and pride, and I always wanted to prove to my girls that we should not be defined by bad things that happen in our lives, our reaction to those things should be what defines us as a person and I got the opportunity to say that out loud, on stage, in front of 1200 people and my girls were in the crowd.

I just hope that I have made my family & friends proud of what we have all achieved and I am so grateful to everyone that helps us as a family. The importance of good people in our life is just like the importance of heartbeats. It’s not always visible but silently supports you. Myself and my family will be eternally grateful to you all.

A very special thanks to Mr Clean shoes, Mr La Dee Daa!

#MusclesMatter

#HywoodsHeroes

Get Involved - Here

That's All Folks!

Insert Coin to Continue

It took about 20 minutes and lots of cursing, but it came to life, Dad had just tuned the television into an arcade machine with a borrowed games console and the screen lit up with the word ‘Pong’ and from this day onward I would become a self-confessed addict to video games. It must have been 1978 when this machine turned up in our living room and as quick as it was here it was gone again, I had no idea where Dad got this technology but it was above our standard of living, I mean we were having to put 50 pence pieces into the back of the television to get it to work, there was no extra money in this house for a games machine.

We had one weekend with this machine from outer space and then it was returned to its owner, but it had left a lasting impression on me that would never leave. A simple game of bat and ball but in sprites on the family television, first to 21 points, it was as simple as that and now I’m going to take you on a potted history of my video game addiction, right up to today…

Shortly after that initial slither of home entertainment arcades were opening in the UK and game technology was moving fast, as was I, doing all I could to earn and gather 10 pence pieces for the arcade at the back of my local video shop. Ironically, I was 12 years old and started my paper round for the local newspaper and my local newsagents to fund my habit and the game of choice on a Friday pay day was ‘Paperboy’, launching newspapers at the coloured house and avoiding non-subscribers, their dogs and drain gates, hoping and trying my best to get to the end of ‘Easy Street’ as many others watched over my shoulder, waiting for failure and hoping for my demise, coins in hand, kids wouldn’t think twice to trample all over you to be next to grab those handlebars.

I was off school with tonsillitis one day and went to the shops with my Mum and persuaded her to let me go and have a look around the arcade behind the video shop whilst she shopped for food across the road. I walked in and two blokes were removing the Paperboy cabinet and replacing it with a new game, and I was first to see it, all alone as all the other kids were in school. I was beaming waiting for it to be plugged in and when it was the screen lit up ‘Bubble Bobble’ it said and one of the blokes put a 50 pence piece in it, 5 credits… “Go on then son, away you go!” FREE CREDITS! I got in trouble that day as mum had to ask the local policeman to help find me because she didn’t even know the arcade existed at the back of the video shop and therefore didn’t look in it to find me and 5 credits will get you a long way with a 100-level game like Bubble Bobble and this was my first experience of being a video game ‘completionist’, an obsessive who wouldn’t give up until I had beaten the machine, blasting bubbles at the enemies, hoping to burst them before they got out and chased me. The other thing about Bubble Bobble was that it had a soundtrack, something that would become so important to gaming, like the game it was repetitive and addictive but brought on huge anxiety as it sped up if you were running out of time on the level. Next to Bubble Bobble was R-type, my next love affair, encouraged to blast off and ‘Strike the Evil Bydo Empire’, a small space craft with a detachable gun taking on huge end of level bosses, one of my greatest achievements in life is leaving that arcade on a rainy Saturday morning having completed R-type and my name ‘MAD’, being at the top of the leader board.

Autumn 1986, It’s a Saturday and there is a school trip to Alton Towers, not the most popular kid I decided to go alone, no family, no mates, just me. It was easier that way anyway, I could go where I wanted and go on what rides I wanted but I was side-tracked, I spent all my money and most of my day in the arcade playing the new kid on the block… Out Run! Out Run was my first love when it came to the racing genre which would become my game of choice over any other.

Get Ready!

The object of Out Run is to speed across the map in your Ferrari Testarossa Spider with your beautiful lady sat beside you as you listen to the Magical Sound Shower, it was dreamy, the sound and graphics were incredible but it was difficult and I always ended up seeing the request ‘Insert Coin to Continue’ which was now a 20 pence piece, times they were a changing’, so I did what I was asked and zoned out in awe of the game in front of me, day dreaming “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

1987 was the year when the arcade truly came into the house, games consoles had made a huge leap and in 1987 the consumer had a choice of 8-bit systems, the Sega Master System, or the Nintendo Entertainment System. Luckily, my paper round had turned into a job in the newsagents during all holidays and weekends, so I was earning a wage at 14 years old and eventually got both the consoles mentioned above and my gaming stayed that way, always buying the latest, next generation system… Sega Master System, Nintendo, Sega Dreamcast, PlayStation 1, 2 and 3, Xbox, Xbox 360, Xbox One and now the Xbox Series X.

My first...

My last, my everything

Along the way I had some massive highlights like Tony Hawk Pro Skater (1999), Call of Duty 3, Eder Dam being my first ever truly immersive online experience (2006) and then there were the games that had those outstanding soundtracks that I touched on earlier. Fifa 10 (2009) rocked out The Enemy, Be Somebody, GTA V (2013) Damien Marley, Welcome to Jamrock was perfectly fitting, to me, music is a special part of the whole gaming experience.

I’ll try to conclude here but I really could go on forever writing about something I’m extremely passionate about like this. A recent blockbuster for me and many others was Rockstar’s fantastic prequel; Red Dead Redemption 2 (RDR2), a fictional recreation of the American Old West in 1899, RDR2 focuses on the life of Arthur Morgan and his position in the notorious Van Der Linde gang. The game follows the gang’s decline as they are pursued by lawmen, fellow gangs, and Pinkerton agents. This was the closest to being in an actual motion picture as it would get, an emotional roller-coaster of a game that blew me away.

Arthur Morgan - RDR2

5^th November 2021 00:01, 200mph in the Mercedes-AMG Project ONE as I launch the latest release from Playground Games; Forza Horizon 5 (FH5), now this game is incredible! Based in Mexico the latest instalment of the series is breath-taking, in my opinion this is the first true experience of next generation gaming, sure the Series X was released in the UK on 10^th November 2020, but I think it was waiting in the darkness until this moment. The scenery is mouth-watering, and the car selection is hugely extensive, the play list comes with a recommendation from me – ‘Midnight Kids, Everything You Are’ and the missions, well the missions are a plenty! In fact, to begin with, there’s too much to do, it’s slightly overwhelming in that respect. One thing I haven’t mentioned until now is what video games truly mean to me, why are they so important to me, well they mean the world, they are a leveller, my disability is non-existent in the gaming world, I am equal. With that said FH5 is the most accessible game ever made. Accessibility features include American Sign Language (ASL) and British Sign Language (BSL) support for cinematics; a game speed modification setting that allows gamers to play at a reduced rate; customisable subtitle options; High Contrast mode, Colour Blindness mode, personalised button configurations and more. It seems that the developers made inclusivity a priority and I love it!

I am 47 years old, and I am stunned by this game… “They’ll never beat this, this is the ultimate game, there’s nowhere to go from here”, The End.

The Champion of the World!

To Be Someone Must Be a Wonderful Thing

The title here has been taken from a song originally by The Jam and then covered by Noel Gallagher. I was recently listening to this in the car on holiday with my family in South Devon and it sparked an internal conversation with myself; it was thought-provoking.

Essentially, the song alludes to fame, success and inclusion and finding acceptance only because of the fame and success. In reflection of recent events it made me feel that I would just like to be included, and that abled-bodied people were the ‘Someone’ that I wanted to be; I just want to be treated the same way as the rest of society, accepted at all costs rather than being frowned upon because I was a burden or an inconvenience. It’s unacceptable not to be accepted.

Imagine you’re with your children on holiday, by the beach and treats and sweets are small pleasures we take at this time of year; everyone loves an ice cream on the esplanade or promenade, right? They offer 90 different flavours. I love a mint-choc-chip myself.

But there’s a problem, a physical barrier in the way; I can’t get into the shop in my wheelchair.

This scene is played out perfectly in the fantastic new Paralympian film on Channel 4 (Super Human - seen here) where we see rugby player Kylie Grimes denied access into Larry’s Café because of the step outside. She turns and retires, swearing under her breath. That was me, is me and will now be me going forward, forever... unless things change.

Some things are changing though, quite literally. Changing Places toilets are now popping up all over the UK, and this is a big deal and needs to be shouted about like my colleague Kerry Thompson (Changing Places Support Officer) shouts with so much enthusiasm. It is a very taboo subject but one that needs to be brought to the forefront. I hold my hands up when I’m slow on the uptake of a campaign and Kerry is streets ahead of me, and I commend her for all her hard work and campaigning for others. The Changing Places consortium is a group of organisations working to support the rights of people with profound and multiple learning disabilities and/or other physical disabilities. Established in 2005, the consortium campaigns for Changing Places to be installed in all big public places so people can access their community.

So we’re now, slowly but surely, finding it easier to spend a penny. But what about going back to spending our pounds? Why am I not able to buy my girls an ice cream on holiday? Why is my money less acceptable than other people’s money?

I think it’s time we spoke about the ‘Purple Pound’. The Purple Pound refers to the spending power of disabled households. A disabled household is a household in which at least one of the members of the family has a disability. Organisations are missing out on the business of disabled consumers due to poor accessibility (both physical and digitally) and not being disability-confident in their customer services approach.

I’ll give you just three statistics to think about:

Business lost in the UK because disability considerations have not been made or met:

· High Street shops lose £267 million per year

· Supermarkets lose £501 million per year

· Banks and Building societies lose £935 million per year

So you can see that the Purple Pound is very big and powerful. The annual spending power of disabled people and their households continues to increase (14% each year), and is currently estimated to be worth £274 billion per year to UK businesses.

Why do businesses not want the Purple Pound, and as a society why do we accept this?

When we think of diversity and inclusion nowadays, we know that many conversations are being had and that people are learning so much, so fast and this is fantastic. But why is it considered acceptable that disabled people are not included in so much? This attitude simply would not be accepted if different demographics in our society where treated this way, and rightly so.

In November 2010 the food hygiene rating scheme (FHRS), which operates in England, Wales and Northern Ireland, was formally launched. This is a system that tells the public how hygienic an establishment is before you walk through the door. Most places have stickers on the doors or windows, and all can be found online too.

What if we carried out similar tests in businesses to see how accessible they were? What if there was a ratings system for disabled consumers?

We’ve seen with the FHRS that 5 star establishments get the most custom, so the same would happen with disability, surely? Or will this never happen because so many businesses would come in at a one or two star rating? The FHRS rating is a badge of honour for a business, and its standard of disabled accessibility should be too. Or are we just paying lip service to inclusivity?

I am writing from a personal standpoint of utter frustration here, but I’m now going to actively campaign more as I have been massively inspired by my colleague Kerry Thompson, the Changing Places network, my friend Rich Copson (co-founder Access Rating App) - who has been talking about these subjects for a while now - and the wonderfully powerful Paralympics advert on Channel 4.

Super Human - Comfortable, In my accessible Dojo

Nearly every day something changes for me, I am always learning and I need to adapt and adjust. With my muscle-wasting condition things change quickly; one day I can lift my mug of tea to my mouth and the next I have to have a smaller cup and not a large mug. Sadly, many of us could easily be affected by disability; in the blink of an eye our lives can change. As always, I like to think of others; if my experiences are negative ones then it is always going to be the same or worse for others, and I don’t want that. One thing I’ve learnt quite quickly is to never take anything for granted, and I see that as a very positive thing. I feel lucky to think that way.

To be someone must be a wonderful thing. But I don’t want the guitar-shaped swimming pool in the song, I don’t want to be a famous footballer or to be rich and have a lot of fans, have a lot of girls to prove that I’m a man...

All I want is to be able to go to the toilet when I need to when I’m out and about. All I want is to enjoy that mint-choc-chip ice cream on the prom with my girls. All I want is to go for an all-day breakfast in a café like Kylie Grimes. All I want is a fairer and equal world for others.

All I want is some small changes that could make a huge difference.

#ChangingPlaces

#SuperHuman

#Paralympics

I Got the Job

At the age of 23 my life changed. In the time it took to deliver a diagnosis my world was shaken up like a snow globe. I’m going to ask you now to spend that same amount of time just to read this blog, and I hope it will go some way to changing the lives of many, many people.

Some people reading this will already know my story but for those that don't, here it is...

All my life I wanted to fix things and I loved motor vehicle engineering, motorsport and everything to do with cars. I was living my dream working on old fast Fords and other classic cars until one day I slipped in the workshop and I couldn't get back up. I had dislocated my knee and my leg was trapped under the car lift. After months of physio and hydrotherapy my doctor noticed that it wasn't healing like it should, I wasn't moving my legs as expected either and he referred me to a specialist at the John Radcliffe hospital, Oxford. During that visit to Oxford I discovered my life would never be the same again. At 23 years old I was diagnosed with a life-limiting, muscle-wasting condition called muscular dystrophy.

With my head spinning and in an emotional maelstrom, I went back to my own GP for the straight-talking truth. He said I would never be able to lift another wheel in order to earn a living, but also, that I wouldn’t need to. I could stop right there and then and receive social security forever. I was lost. I was sad, angry and scared. After eight years of doing what I loved I would have to give it all up; the dreams I had as a child were gone.

As a person, and as a Dad, I’ve always felt my behaviour is infectious. I felt like giving up, and it would be easy to claim benefits for the rest of my life. If I quit working and gave up, then so would those around me, but if I fought to carry on then I could inspire those same people instead. I had to be the best Dad I could be, and my girls had to see that you shouldn’t be defined by the horrible things you encounter in life, you should be defined by how you react to them.

My anger burnt out and slowly turned to focus and determination. I transformed from feeling beaten to feeling a hunger. I felt a desperate need to help myself and others, to try to find a treatment or cure for my own condition, which was already having a physical effect. I knew I needed to change my whole career and this was daunting, I faced a profound crossroads where my life would change from workshop to office, with all the language, cultural and behavioural change that entailed.

I closed my eyes and dived into the deep end. I took all my motor vehicle engineering experience and applied for a job at Volkswagen UK in the fleet car sales department, picking up sales experience and a whole new level of communication skills. I then used this experience to gain a job purchasing components at an IT company, and after a few years pushed on once more to work in a pharmaceutical company working on clinical trials.

My journey had taken me to a position where I could see progress of medicines and results of many clinical trials including trials for stroke, cancer, epilepsy and indeed muscular dystrophy, right in front of my own eyes. I felt that maybe I couldn’t control my own destiny, but I could still affect change, not for me but for younger people with my condition who hadn’t had the same chance to enjoy life like I had.

It was in this period that my wife started to see stories on social media of children receiving diagnoses of different strains of muscular dystrophy, and we looked at our three fantastic girls and felt so grateful that they were so happy and healthy. But that wasn’t enough, we couldn't feel content solely with our own lives, unless we did something and tried to help others.

Our new lives as dedicated fundraisers started by walking one solitary mile. My plan was to push myself and my muscles further than we thought possible, because I was slowly losing the ability to walk altogether. We raised £1000 by walking to my local pub, supported by family and friends. It felt liberating, inspiring and invigorating, but also absolutely exhausting. But then someone at Muscular Dystrophy UK told us the difference our £1000 would make to the community; it would fund a whole 22 hours of expert research. Imagine what progress could be made in that time? It resonated with me because when I was first diagnosed, I was told there was no treatment or cure. No magic pill could be taken to make things better. Yet we had given ourselves and others hope by walking one solitary mile, and seeing a tangible benefit from it would be the catalyst for so much more!

Fundraising had well and truly begun in the Hywood household and many other households, because my infectious positivity became an influence to others, just like I hoped it would. One mile led to many others. We walked individual miles to many famous events like the F1 at Silverstone, the tennis at Wimbledon, the FA Cup final at Wembley, we even recreated the most famous mile ever; Roger Bannister's at Iffley Road, Oxford and so much more. By now I had become a very proud ambassador for the 'Move a Mile for Muscles' campaign at Muscular Dystrophy UK, and our fundraising team – “Hywood’s Heroes” - was getting bigger, as were our events.

Being selfless and infectious felt fantastic and rewarding in a pure and natural way. This was never more evident than when I pulled off one of our biggest events by organising a group climb up Mount Snowdon, Wales in 2017. Initially the idea was that a few friends would help me climb to the summit, but in the end I persuaded over 40 friends and members of our family to do it. This was a physical and mental challenge for a lot of them, but seeing people extend their limits and achieve demanding personal goals, because of me, was emotional and incredibly stimulating. You cannot describe that feeling of inspiring people to cast aside their doubts, fears and anxieties and just go for it. Personally I was exhausted, but I couldn't sleep for days, I couldn't believe that we just did that. Euphoria.

Snowdon - The only way is up!

With the help of these people and many others, we have since raised £185,000 (4111 hours of research) and set up our own family fund; Hywood’s Heroes for Muscular Dystrophy UK.

Our house sale in January 2020 presented our family with an opportunity; to take a break, press reset and for me to finally look for a dream job to replace the one I had to give up all those years ago. My wife said I should be fundraising full-time and the goal was set; to find a fundraising job either helping a children's charity or a mental health charity. Psychologically I was ready to give this my all, because realistically I would only be working for another 10 years due to the deterioration of my muscles. With a massive desire and hunger to help others, I set about updating my CV, which looked a lot like what you're reading now!

However, fate had one more bad hand to deal, but this time it didn’t just affect me, it put the whole world on hold. On the 23rd March 2020 the UK went into lockdown due to the pandemic. I had no idea what the next 12 months would bring as I was petrified of COVID-19. My immune system is already under lots of pressure, it is working overtime to help my body and having to fight this indiscriminate and totally unknown new virus filled me with fear and made me feel exposed and vulnerable. With the jobs market thrown into chaos by furloughs and redundancies, my plans had been scuppered. Shielding and anxious, I started to apply for any jobs I could find, but everything was up in the air. I didn’t know what the future held, but I also knew my immediate future involved facing up to a stark reality I could no longer push to the back of my mind. 

With a muscle-wasting disease, if you don't use your muscles then you lose your muscles, and during the first stages of the pandemic when I was holed up inside, I discovered this myself with sadness and resignation. During 2020 I finally lost the ability to walk. My legs were exhausted and they irreversibly conceded defeat, saying 'so sorry, we've had enough pal'. And it's fine, we've been on some amazing adventures together with some beautiful family and friends. But at the same time I felt like I was fading away, stuck permanently indoors wrestling with nagging feelings that I was letting my family down, I was the person I never wanted to be, I felt hopeless and yet blameless.

One thing the last year has taught me, however, is that friendship and solidarity is critical for us all to function and survive. Luckily, during this period of solitude, uncertainty and overwhelming physical change, I was comforted by so many messages of support from all over the place. We even received a couple of food hampers from people when we missed shopping delivery slots. So many people, often strangers, wanted to help because they realised that charities were experiencing sudden and unforeseen funding gaps, and the humanity and generosity we have seen and experienced over this period has been incredible.

We had to cancel a star-studded comedy night; our biggest and most high profile fundraising event yet, but we tried to escape the isolation and helplessness of COVID by virtually fundraising. I even ended up on SKY ONE with Jon Richardson and Russell Howard explaining what lockdown was like from a disabled person’s perspective and once again, as a team, we went on to raise over £25,000 doing lots of increasingly daft physical challenges without leaving the house.

In 2021 I carried on with the job hunt, but in February I got an end-of-the-month report from a job site stating I had applied for 76 jobs and made no progress with any of my applications; none whatsoever. It was utterly soul-destroying; the futility of it all laid out in black and white. Furthermore, I looked at some statistics which showed that disabled people are 29% less likely to be in employment than non-disabled people. That was a statistic I didn't want to be part of. Also, disabled people have to apply for 60% more jobs than non-disabled people before finding one. I was very much at the sharp end of experiencing this level of hopelessness and being shunned by society. I was one of these statistics.

After a whole year of insecurity, anxiety, dead-ends and despair, on Friday 5th March 2021 I woke up to the usual barrage of emails from job sites with their latest jobs to apply for. But this time there was one on the Charity Jobs website - Regional Corporate New Business Officer at Muscular Dystrophy UK - that really caught my eye and I swear, the clouds parted and the sun came out right there and then. I immediately applied and got an interview for the position on the 24th March. I had plenty of time to prepare but I was nervous, this was the perfect position for me. Maybe I’d been kidding myself in some of those fruitless 76 applications previously, but this time it really was the perfect job.

You’ve probably guessed by the title of this article but...   I GOT THE JOB!!! I’m back in the game, back in control and back making a difference.

So remember when I asked you to spare me the time to start changing lives like mine did? I want to thank you for that, but I don’t want to stop there. If this journey I’ve been on has taught me anything, it’s that, together, we can move impossible miles, climb mountains and give hope to those who have none. I’ve learnt that many people making a small contribution can deliver real change and that out of the time it took me to receive a diagnosis and you to read this, we can make a real difference in the battle to deliver a more positive outlook for those facing the diagnosis in the future. That action delivers hope if you set about making a difference.

All my life I wanted to fix things. And now I have the potential to find a treatment or cure for my very own condition, and if that's not trying to help yourself in life then I don't know what is!

Now I need your action to join me in helping others. Could MDUK be your company’s charity of the year, would you like to form a wonderful partnership? Do you have a corporate social responsibility manager and/or a Human Resources manager that I could meet and have a coffee with? Or are you indeed that person reading this right now?

You can join me and everyone else in making a world of difference to many people like myself, because our muscles matter. Get in touch and we can discuss everything from walking miles to moving mountains, but importantly we can talk about giving people hope.

Please do not hesitate to get in touch for an initial informal chat or email, my details are m.hywood@musculardystrophyuk.org and mobile 07899917868

#MusclesMatter

The Last of the Summer Wine

Autumnal scenery really is some of the best that the eye can see, to stroll amongst the burnt looking foliage and take on the smell of the bonfire that took place the night before, is a wonderful thing.

Afterwards we’ll go home and slip under the couch duvet and watch a thoroughly deserved movie in the warmth of our homes…… where some of us have been for the last eight months!

It has not been easy has it? Lockdown started with the Hywood Swingball Championship in the back garden (our Olivia crowned champion after 312 wins!), not being able to get a shopping delivery slot, painting the garden fence, watching a crazy fella messing about with lions on Netflix, the introduction of ZOOM to all and cancellation after cancellation to absolutely everything! It wasn’t all bad though; we sat down as a family to dinner (all eating the same thing for once too), we laughed at the same TV programmes, we encouraged each other to exercise, which got the endorphins going, we home-schooled and told them about what happened in ‘our day’, and about being hit by the dust cloud-inducing chalk board eraser. They learnt some of our music and we put up with some of theirs.

As we went into spring, it was with a dreaded inevitability that we realised we would have to postpone our planned comedy gig at the Aylesbury Waterside theatre, and this really tore my heart out. This comedy night was the biggest event I'd ever planned. Myself and Jon Richardson started this process in August 2019. It wasn’t easy to organise and was on track to be one of the best gigs in the whole of the UK, I was truly gutted.

Luckily though, this was only a postponement and will be back on June 20th, 2021. And on the back of this bad news I was invited onto ‘Russell Howard’s Home Time’ on SKY One! We talked about the gig and most importantly the funding gap that charities faced due to the pandemic. This went on to inspire family and friends to get up and fundraise... indoors! We had friends walk miles to our house for a bacon sandwich and glass of prosecco whilst being sponsored. We climbed to the peak of Snowdon on the stairs in our houses, we cycled, we ran obscure, unorthodox marathons all over the country, we played football manager for 24hrs, we had a LIVE gig on Instagram and we clapped for our unsung heroes until our hands were sore.

I also made another campaign film this year in which I told everyone that because of shielding I had lost the ability to walk unaided, and that staying inside had taken away the power that I once had, it had made me fade away a bit both physically and mentally. I wanted everyone to see and hear this too. Usually I would keep progression of my condition to myself, but it wasn’t just me, many other people were being shielded and losing abilities too.

Just this week I have been listening a lot to Hollywood actor Michael J Fox as he talks about living with Parkinson’s Disease, and that sometimes those of us considered inspirational and upbeat can sometimes get fed up with it all. He used to be a believer in making lemonade out of the lemons we’ve been dealt, but now he writes: ‘screw it - I'm out of the lemonade business!'

Another story on social media this year has been that of Rob Burrow. Rob played rugby league for the Leeds Rhinos, a club that has been really supportive of my fundraising efforts in the past. He played nearly 500 games for the Rhinos and scored 198 tries over a 16-year career and won eight Super League titles, two Challenge Cups and three World Club Challenge titles. More than that he was a pocket rocket, at just 5 feet 4 inches he was an explosive player with devastating pace, and because of his height, he was considered one of the bravest players in the most brutal of sports too. Quite publicly Rob has shown the devastating effects that Motor Neurone Disease has on a person, and Sally Nugent was allowed into the family circle for a BBC documentary, to bring us all the emotion that came with Rob’s life slowly draining away at just 38 years old. Many people call me inspirational and many other things, but Rob is the real deal. If you ask me where I'm looking, it’s at that man.

As we consume the last of the summer wine and start the process of pickling the onions, cabbage and cauliflower and contemplating all that December brings, it gives us a time to reflect, and we all have so much to think about. We could be sad that we’ve missed out on so much, and everything we took for granted before should never be so again. We must take into account that lots of people around us lost loved ones this year, and some so young too, in which case I think we should be grateful for all that we have and those closest to us, albeit two metres apart.

Like everyone, 2020 has been a year of adjustment and adaptation, but for me it’s also one with lessons learnt; not to take things for granted ever again, be more patient and, most importantly, be grateful for all that we do have. There are too many people to thank in a blog post, but a huge thanks to all that have helped us this year. Despite being in a pandemic we have raised over £30,000 with ‘Hywoods Heroes’ for Muscular Dystrophy UK, and that’s simply incredible.

It’s going to be a really tough few months, maybe years for many, so try to be selfless where you can be, loving where you can be, helpful where you can be ……and do it with a smile. 

Disability and Us.

On Sunday 5th July at 21:00 on BBC2 there was a programme which prompted me to get talking to a friend. Alex Brooker (The Last Leg – Channel 4) was telling us about his experiences of disability in his life.

Myself (47) and my good friend; Freya Levy (24), thought this was a great use of the platform and it became a catalyst to write this and tell you about disability and us!

It has been nearly 25 years since my diagnosis of Muscular Dystrophy (a muscle-wasting condition) and 10 years since Freya received her diagnosis too, and we wanted to talk about it and write a shared blog post off the back of Alex’s programme.

I first met Freya in the Houses of Parliament a few years ago, believe it or not. We were there to discuss access to grassroots sports with representatives from the sporting community, the leisure industry and indeed politicians. Our friendship grew and we quite often caught up when Freya played Basketball at the Stoke Mandeville Stadium (home of the Paralympic movement).

Talking about Alex Brooker’s programme last week, we agreed how so very close to home it was and how so much of it resonated with us. Coming to terms with a disability that can change your life quite dramatically, and quite quickly, was a shock to the system for both of us. Upon being diagnosed, Freya immediately grabbed the bull by the horns and wrapped herself up in the most amount of disability sporting opportunities that her body could handle. Her aim was to turn her negative into a positive, reach for the stars and represent our nation at international events.

I wasn’t so fast off the mark and it took 20 years to realise I had to do something to help myself and others. We, as a family, started fundraising about five years ago. Social media and self-promotion have been a huge part of this fundraising and have grown to be a vital tool in its success, so much so that it has effectively become a voluntary, part-time career for me. Social media has allowed me to connect with celebrities and influential people who have helped and supported me to raise funds, which has subsequently enabled transformational research into our condition to take place.

Alex said at the start of the programme that he wasn’t the same as everyone else and that stands with us too, and for me this isn’t a bad thing. It’s good to be an original! Alex also spoke about getting out of jobs and errands around the house because “he didn’t have his leg on”, which made myself and Freya laugh when we had our ZOOM meeting to discuss writing this. Sometimes our disability and its severity can be selective, particularly if we want to push the boundaries with our partners and family. All tongue-in-cheek and done with a light heart of course, but a cup of tea always tastes better if someone else has made it, with your instruction from the front room “…and don’t forget the biscuits”.

The next part of the programme was similar to what myself and Freya did to write this, and that was to meet up with an old friend and discuss each other’s lives, how things are now and how certain things are dealt with. And a big talking point for us was the mention of this being self-deprecating. We agreed that it’s acceptable and sometimes it’s the ice-breaker and makes things easier for everyone. It doesn’t matter, disabled or not, if we laugh at ourselves. We should all do this. I remember shortly after my diagnosis that my brother (diagnosed with the same condition) had trained his Rhodesian Ridgeback to pin me to the floor on command, just for a laugh. So, in return I trained my Boxer dog to steal his walking stick whenever he put it down or didn’t need it, and this would render him stranded. Again, just for a laugh. We always ended up laughing about this even after some terrible falls and the occasional trip to A&E. It’s important that we laugh, it’s sometimes the best tonic of all when you have a diagnosis of a condition with no treatment or cure. When everything else seems so bleak, comedy and laughter can boost you more than any tablet or pill ever could.

With a muscle-wasting condition the importance of being idle goes without saying, rest is most welcome. However, Alex put an emphasis on his huge love for Arsenal Football Club and how it felt to, maybe just for a few minutes, have no disability at all, to feel the same as 60,259 other people. I cannot stress enough how important this part of the show was for me. Unlike Alex I don’t support Arsenal, I’m a very loud and proud Leeds United supporter, but it hasn’t always been that way. I used to creep into Elland Road under the radar, because I walked funny and wobbled a lot. But after writing blogs and posting videos on social media, I have been lucky enough to be welcomed by so many new friends who feel like family to me, that I now stroll into the ground in my wheelchair with my head held high seeing so many familiar, beautiful faces. It’s now that it feels like home, and as Alex mentioned, maybe just for a few minute bursts, the disability is gone for me; we are all together and all want the same thing; the elusive three points.

Front row, Elland Road!

Like myself, Freya finds sport to be an imperative factor in her life. She has a six-year plan to achieve as much as humanly possible before Muscular Dystrophy taps her out of sport altogether. One of the reasons Freya is a good friend of mine is that she is a very determined fighter and will never be told when to quit. Playing Rugby 7s, Ice Hockey and Basketball, all on an international level, should give you an idea of the type of person she is. And now she’s eyeing up Rugby League too. If I was the opposition, I would have concerns that someone like this is coming at me!

It’s never been straightforward though, and Freya told me how she has fought through so much to be where she is in life right now. In 2016 she spent four months sofa-surfing and living in her car, because she had problems with appropriate housing. She was pushed from pillar to post, put up in hotels and hostels, until she was put into an old people’s home, where she was subjected to vile bullying and abuse from other residents.

All of this, and then in May 2016 Freya went to Germany for the European Basketball Finals which might have put her new, appropriate accommodation at risk. But she took that chance and went on to achieve a gold medal. As if that wasn’t enough to make you smile and feel proud, she then got up the next day at 06:00 to fly straight to Texas to meet Michael Johnson (American retired sprinter who won four Olympic gold medals and eight World Championships gold medals) to take part in his Young Leaders sports programme and to better herself.

Freya with Michael Johnson

So, you see, when someone like Alex speaks so openly, this enables others to do the same. He has become a catalyst for conversation and might not have even had that intention or realisation that this might happen. But the other important part of this conversation is self-analysis.

Freya and I both agreed that it was good that Alex re-visited Great Ormond Street to discuss his body, and to talk quite frankly about change. When a specialist tells you there is nothing they can do, then you have a tendency to cancel hospital appointments because you deem them useless. However, we have both decided to get back in contact with hospitals and GPs to discuss our futures, knowing that these conversations could be difficult and hard to face up to. But we both know they are conversations that need to be had and not swept under the carpet any longer.

Sometimes thinking and talking about the future can be scary and so very hard to face up to. But if you fail to prepare you should be prepared to fail. This is why we spoke openly about our pains on our ZOOM chat; we both have severe neck and shoulder pain and Freya suffers badly with scoliosis, so appointments will be set up with Queens Square hospital and John Radcliffe respectively.

In the documentary Alex spoke to a call centre (Scope) which dealt with many different problems surrounding disability and the help that people needed, and sadly there were so many stories to be told. Luckily, Freya and I have been helped by Muscular Dystrophy UK and their Advocacy service, for which we have so much gratitude. That then leads me onto our support network and all of those around us; the family and friends who would move heaven and earth to help us and the others we wanted to help too. We have raised a few quid and paid for two important power chairs, to make a radical change to people’s lives that desperately needed them. We have pushed ourselves because the network around has helped us, and we feel extremely lucky and grateful for this.

I am not the best at disability speech, even at my age I do not always get things right and I’m not afraid to say that I’m still learning. I think the second time I met Freya I asked her why see was wearing £180 Nike Air Jordans when she was always in her wheelchair. And she replied that they were the most comfortable shoes you could put your feet into, because you’re in a chair they stay crisp and that really grates on people like me (ambulant, walking types). That was me told, and now that I use my own wheelchair I also rock up in my Air Jordans, for all of the same reasons mentioned above.

We will never go forward in this life if we do not talk and sometimes have uncomfortable conversations. Alex Brooker’s documentary has rung so many alarm bells and I’m so very glad about that, because appointments will be made and we will take a good look at ourselves in the mirror. Disability should not be what defines us. I haven’t really ever considered that it does with me, in fact I would say that it has affected me positively. I’ve done so many great things with so many great people, I have made memories I never thought I would have, and this is what disability and us means. Freya and I have gained so much positivity out of something so negative, and the results and outcomes could have been so different.

https://www.bbc.co.uk/iplayer/episode/m000kqkf/alex-brooker-disability-and-me


#BeSelfless

#MusclesMatter

Little by Little

As we enter week 13 of lockdown and shielding for the elderly and vulnerable, I wanted to tell everyone how we’re getting on and the plans we have to try to help ourselves and others.

Due to having a degenerative condition I have been petrified by Covid-19 and the threat it brings. My immune system runs at about 20% and I feel that my body would not be able to fight it. During this time, I have been trying my best to exercise but I’m limited due to space and we’re still waiting for official advice from governing bodies to instruct us when it is safe to go outside again.

I would usually see my private physical trainer (PT, Gregg) in Aylesbury on a one-to-one but of course this has been impossible, which is a massive shame. Gregg takes care of me physically and psychologically and the two go hand-in-hand, as I always leave the dojo exhausted but extremely happy due to the amazing endorphins having a party!

Sadly, over this period, little by little, I have deteriorated physically, which in effect has done similar things to my head. I have been trying my best to stay positive and keep walking, but I’m now only covering a few steps around the house and not any kind of distance at all. The muscle mass and muscle memory are fading away, and it’s strange to think that Covid-19 would have these side-effects on my family and I. I’m finding it difficult to lift my arms too and have to help myself by using my left hand to lift my right hand and vice-versa. I’m losing functions daily, things I used to be able to do on a Tuesday I cannot now do on a Wednesday; it’s that noticeable to me.

Just yesterday I started to think of the things I did before COVID hit and whether I would be able to do them again? The dog walks with family and just some fun in the park or at the beach. I’m a huge family person too and I miss the hugs and the emotion of meeting up.

Myself and son-in-law getting stuck!

I’m a very lucky man and have lived a great life so far and been so fortunate to have been to places and seen so much with my wife, but I now have concerns for others around me and I believe that we should be selfless and help where we can. With social media during this time we can see others struggle too.

Online I have seen the struggles of young friends like Finley (Spinal Muscular Atrophy) and Carmela (LMNA Congenital Muscular Dystrophy), young children who deserve a better future, some hope and light out of all this darkness.

My mate Finley!

I have been inspired by their families and all they are having to deal with at the moment, and I would like to try to help, to make sure there is a future for them, to reassure them that fundraisers are still out there doing their best to help others, just like my team always do. And so I came up with a plan to help myself, the charity and most importantly children like Finley and Carmela.

Carmela the warrior!

As you know, I am a very proud volunteer and ambassador for Muscular Dystrophy UK and right now the charity that we volunteer for faces a huge crisis with a funding gap of £2.8 million, due to the current COVID-19 crisis.

On June 20th (this Saturday!) the Football League starts again and with help from The Square Ball and the Leeds United Supporters’ Trust, a group of family and friends will cover the distance it takes to get our family from Aylesbury to Elland Rd, Leeds and then back again on Sunday June 21st! That is 316 miles!

We will cover this distance between us by walking, running, cycling and maybe even swimming! I will be walking impossible miles in the safety of my back garden with support from my wife and the girls.

The objective is to raise vital funds for Muscular Dystrophy UK so these children and their families have a charity to turn to in the future, to help myself and try to get moving physically, to push myself to the limit and therefore help my mental health too.

A few years ago, I was the guinea pig for a campaign called ‘Move a Mile for Muscles’. Well you can consider this the 2020 relaunch of that campaign. It might not sound like much, but to organise 30 people all over the UK to take part in a virtual baton relay covering 316 miles is quite something, and this all has to be completed by midday on Sunday 21st June, because that’s when Leeds United re-start their campaign in the Football League, so we have a deadline too!

I would like to conclude with many thanks and so much gratitude. This has not all been a negative situation. We have clapped for our carers; neighbours have knocked to ask if we needed any shopping or supplies and we’ve never spoken in the past, friends have called round for social distancing coffee, sharing delivery slots with family and so many video calls from family and friends far and wide (Perth, WA!) when we may not have usually done any of that.

We must now try to take some of this experience with us when we go forward in life, some of the empathy and compassion is what should become the ‘new normal’; the polite conversation between the courier or the shopping delivery person, waving to the neighbours from our windows and the calling of concerns for welfare over the garden fence. We should put more emphasis on how easy it is to be selfless because it will cost us nothing at all.

If you would like to take part in ‘Move a Mile for Muscles’ or get involved in any way to help me to help others, then you can get in touch on my social channels, start your own page and sponsorship would be greatly appreciated here...

https://www.justgiving.com/campaign/hywoodsheroes


Little by Little we can make a huge difference.


Cheers!

#MoveAMileForMuscles
#HywoodsHeroes
#MusclesMatter