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

Ups and Downs

On 11th May 2012 I took to social media to tell my story about going to football as a disabled supporter. This was a ‘line in the sand’ moment for me in my life; nothing would be the same again. And what a journey it’s been……….. 

For me, social media has been an extremely positive experience, but I can appreciate it can be a dark place for so many people too and I’ve been asking myself why that is?

  

It seems that social media has enabled people to do and say as they wish and I believe this starts from the top down. Politicians and ‘trusted’ media outlets have been using vitriol and spreading bile for the last few years, more than ever before, and nobody has held them to account for it. What happens after that is every foot soldier for any political party, right across the spectrum, feels they have the right to also speak and write how they wish, without any comment or come-back expected. 

Obviously, we are adults and can quite easily not write or reply to these remarks we see on a now daily basis, but some of us do and what I’ve learnt is that it will eventually end up causing me concerns for my own state of mind.  

The problem with being politically argumentative on social media is that it then carries over into every single part of our lives. It is the age-old theory of the adult and the child; if the adult says or does something then you cannot expect the child not to copy. 

It seems to have become acceptable to judge someone on the colour of their skin, their ability or disability, their size, their gender and indeed their mental health. This is unacceptable and we need to change this attitude and fast. 

The old saying ‘if you can’t say anything nice then don’t say anything at all’ should be applied more often, and people should think more about how they interact with others and how they react to things they see on social media. My take has always been to show empathy, compassion and to be selfless, and trust me the return is incredible, it happens so naturally.  

I’m not innocent here either. I was thinking about my memories the other day and they say that most come from love, laughs or sadly trauma. The earliest memory I have is being sat on a potty on the edge of Mount Snowdon, where I literally crapped myself! I don’t think many people have to think about memories too much nowadays because Facebook can take care of that for us. It’s as if we have exported that part of our brains to a 2TB external hard drive and with that goes emotion and care. Our children see this and replicate it on their tablets and pads too, some of this is our fault, but it’s in our hands to change that, and to go and physically make new memories before it’s too late. 

After seeing and hearing lots of stories of people taking their lives, it resonates with me and reminded me of my dear friend Jermaine who sadly took his own life. He was exactly the sort of person who would definitely make you think everything was OK. He was, quite typically, the life and soul of anything he was involved in. I’ve never seen a smile like Jermaine’s and I’ll probably not see one like it again, and this is why we should all talk more, so these things are prevented. 

‘Be Kind’ should be an emotional default, we shouldn't even have to think about it. It's the way I've been treated and the way I treat others. I have been so lucky simply by being selfless. I’ve seen great things from people, so we must take all the positives and tell others about them too.  

Many adventures, memories and stories later and I’m still here fighting to beat my degenerative condition, and I actually feel like I’m winning both physically and mentally. And this isn’t all on me, it’s due to so many people around me. So many people have helped me come so far, due to belief and solidarity. 

The friendships made along the way and the awareness and funds raised have been beyond all of my expectations. During my campaign over the many years, I’ve been on Radio, TV, our film campaigns, I’ve met some of my heroes, we’ve had royal invitations, I’ve represented in the Houses of Parliament, headed up the national ‘Move A Mile For Muscles’ campaign, taken 40 willing family and friends up Mount Snowdon, carried the Paralympic torch, raced around Brands Hatch, raised so much awareness & funds and so much more than that.  All these things, along with friendships made, make all the pain worthwhile. The ability to be nice is really quite simple and will cost you absolutely nothing at all.

So where am I now? What’s next for me? 

On April 9th I will be hosting a comedy show with Jon Richardson & friends at the Waterside Theatre, Aylesbury. This is my biggest event by a long, long way and will be one that I am most proud of. I was dragged up on the best of British comedy from The Goons, Month Python, Norman Wisdom and so on. I still keep pinching myself as I drive past the theatre most days, unable to believe this is actually happening. It’s going to be incredible! 

The other day I was sat down enjoying my brew and I realised how far we have come, and I got quite emotional. I started with one blog post and walked one mile, which raised £1000. 

We are now an official charity family fund called “Hywood’s Heroes” and to date have raised over £150,000, which equates to 3,333 hours of world class research. All paid for by us and indeed you, reading this! 

This is what kindness, empathy and being selfless does. This is a massive positive about being on social media, this is the best of it, because I couldn’t have done it any other way. I find it impossible sometimes to put into words my gratitude and thanks to so many people. There was a time when I would sneak into football under the radar because of the way I walked due to muscle deterioration and exhaustion, utterly embarrassed by myself. Now I find it hard to meet up with so many people beforehand when there is also the important factor of indulging in chips and gravy before kick-off. Despite all my health issues I realise I am a very lucky person to have made so many friends. 

I think we should all try to use the word ‘hate’ less, scroll past if you don’t like something, don’t comment if it’s not necessary and try to be a bit bloody nicer. As I said, it will cost you nothing at all and everyone will feel better about many more things. I believe there is a connection between social media and our mental well-being, and we should take breaks away from the social media bubble more and get out and about. Exercise is a massive tonic to help unlock the cobwebs, release the stored thoughts and end the self-doubt and the relentless questioning of ourselves.  

Look out for those around you, ask if your friends are ok, be kind and be more selfless than you’ve ever been before. Take into account that we all have ups and downs and occasionally we need picking back up, because even the strongest of us fall down occasionally. 

Some of #HywoodsHeroes - Friendship!

Cheers!   X 

Samaritans – 116 123 from any phone 

Mind – 0300 123 3393 

#BeSelfless  #MusclesMatter