The Muscular Dystrophy Campaign's conference and the next episode.

On Saturday, 18^th October I attended the Muscular Dystrophy Campaign’s annual conference.

A chance to hear all the latest news, hear fantastic stories of inspiration, take part in work shops and generally catch up with friends within the muscular dystrophy community.

It started in earnest with the chief executive, Robert Meadowcroft speaking about the strides which have been taken in just 12 months. Robert went on to pay a great tribute to the late and great Lord ‘Dickie’ Attenborough. Lord Attenborough had been the president of the campaign since 1962 and it was in early 2013 that he left an impression on me. HERE you can see why.

Lord Attenborough tells a story of opening a hospital fete and noticed a group of boys in wheelchairs and went on to discover who these boys were and why they were there. The reason was Duchenne. He went home, saw his lad playing football and realised that he had to help and that’s what he did. He rang the secretary of the muscular dystrophy group and asked “Will you let me help?” and he did, in droves and relentlessly too. That is part of the reason I’m always so enthusiastic to help.

We then heard from Gary Bennett, a volunteer fundraiser, raising awareness and funds for his daughter’s condition and what an inspirational speech it was too and all the while raising in excess of £32,000.

After a quick coffee break, the next speaker was Marita Phlschmidt. Marita spoke about exon skipping and progress with clinical trials of which there are plenty. I must say that I’ve heard Marita speak many times and every time I’m extremely impressed with how she communicates such a complicated thing, with so much science involved to an audience of regular people. Some may not have any experience of these conditions until recently, genetics or scientific and pharmaceutical language, yet she always gets the message across perfectly.

I then went to lunch with Hayley, a friend whose son has limb girdle muscular dystrophy and Peter, another friend whose brother has Duchenne. Hayley recently skydived and raised the charity profile as well as thousands of pounds and Peter runs marathons, lots and lots of marathons! So the conversation at lunch was very inspirational and uplifting.

The first session in the afternoon was a workshop for me. I chose to get out of my comfort zone and visit a physiotherapy workshop. If truth be told I have never got on with physiotherapist, they anger me with lack of knowledge of my condition and their expectations of me. This was the first time it felt different. This was the first time it felt good. I came away from that session wanting a therma band and looking for a Tai Chi class in my local area. Whoever arranged that session or thought it was a good idea was right.

The final part of the day was a round up by Chairman Bill Ronald and the president’s awards presented by Sue barker MBE. This was another very inspirational part of the day. Hearing stories of commitment to the charity above and beyond the call of duty.  Those willing to help others with no questions asked. One award winner was Hayley too! Needless to say that myself and Peter clapped until our hands were sore.

So that was the National conference over. Another great year and like most events I attend that have been arranged by the charity, I left with a great sense of happiness and hope.

I cannot finish this here though. I honestly think that people should ask that question more in life. Richard Attenborough really did start something with me after I heard those words… “Will you let me help?”

As I mentioned above, I have many friends within the muscular dystrophy community and it is absolutely fantastic, I am extremely grateful! Most friends I have met due to the condition however, recently, I was put back in touch with a friend and ex-colleague; Marie.

Marie told me that her son had been diagnosed with duchenne. I cannot imagine how she felt and immediately tried to think how we could help. I asked one question on social media about an event next year and was inundated with replies. The amount of people that are willing to help me to try to help others was unbelievable.

I was supposed to be retiring from fund raising, I’ve had an amazing year this year I had got as high as I could get with my ‘Miles for muscles ‘and the feeling of achievement is second to none. I wondered if it was just me that felt that way so I asked my friend Jo, what charity work and fund raising events meant to her, she said “Always feel proud at what I’ve done and get emotional when I think about  why I did it and what it means. I feel privileged that I am physically able to do these challenges, even though sometimes I doubt myself and get nervous in case I let people down. But you can’t beat that amazing feeling and buzz getting to that finish line knowing you’ve raised vital funds for great causes. I always use these thoughts to get through the pain and keep going. Also, getting words of encouragement from people before, during and after the event really helps. I’m always on a high after and that’s when I start to think about my next challenge” Just brilliant.

So to show Marie, her family and many families like hers that we are here and we care, we will be organising the biggest fund raising event that we have ever taken on. I say we because it will involve lots of organisation and also lots of participants. I already have the full support of my wife Michelle, who has also volunteered to be involved in many ways as well as many friends who have also already committed… “Count me in!”

We have come on leaps and bounds with ongoing research since Lord Attenborough made his pledge in 1962 and as I have said we have so much more hope nowadays but please ask someone that question today… “Will you let me help?” and watch their smile grow and some of their worries will be lifted.

Over 26 miles, over 30 participants, raising huge awareness and vitall funds for world class research. A marathon of miles for muscles – An orange relay never been seen before. 2015, watch this space!

Feel free to follow me @HywoodMartin and the muscular dystrophy campaign @targetMD on twitter.

An open letter to my constiuent MP.

Dear David Lidington,

I am writing to you today with great concern regarding recent comments made by Lord Freud at the Birmingham conservative party conference. The comments made said that some disabled workers "were not worth the minimum wage" and should be paid £2 an hour.

This is alarming and sends out a message of discouragement, exclusion, and partisanship from a man in a very high and influential position.

Let me tell you a little about myself. I am disabled. I was diagnosed with limb girdle muscular dystrophy when I was 23 years old. At this time I was a motor vehicle engineer which was very much a physical job that I would have to give up because I would get weaker and weaker. I knew I needed to be in an industry where I could help myself or at least see progression with treatments and after 17 years that is what I now do. I trained and re-educated myself to work in the pharmaceutical industry. It has been a very long and hard road but I’m here. The documentation and media that gets processed through my company and the assistance we give clients contributes towards treatments, medication and medical devices to help with so many different conditions and illnesses. I process daily, paperwork that helps with epilepsy, cancers, stroke, arthritis and so many more illnesses and conditions.

On more than one occasion I was told that I could stop work and claim benefits such as incapacity. This could have been a very easy option for me: benefits, council house, and a reduction in council tax, all at the cost of the tax payer?

Luckily it wasn’t my young ears that heard and took on Lord Freud’s comments, luckily I wasn’t discouraged and I empowered myself to work and help. Attitudes like Lord Freud’s need to be eradicated. Like anyone in society, surely everyone should be encouraged and supported into work and the minimum wage should be exactly what it says it is, everyone included?

I look forward to your reply.

Regards

Martin Hywood

Just one solitary mile.

On the 30th August 2014 I took on one of the biggest challenges of my life, to walk one mile to Elland Road, Leeds.

The Walk

The walk is something we all do, whether it's to the hallowed arena of Elland Road, towards a stadium in opposition territory fuelled by blind faith and high spirits, or even up Wembley Way - it’s part of our matchday experience, and it’s something most of us take for granted. At times, I feel I may have included myself among that number, but no longer.

For those of you who don’t know me, or are unfamiliar with my story, my name is Martin Hywood and I'm a 40-year old Leeds United fan, living with and adapting to, a life with Limb-Girdle Muscular Dystrophy. That common passion I have for my football club and those great, good and often heartbreaking experiences, I share with you all. However, because of my condition, I'm also starting to realise that this great big thing that is such a large part of all our lives, and has been for all of our lives…for me, it’s going to change, it has to.

In all my years as a Leeds fan, I have enjoyed and will remember so much. Those early days of going to football, the enthusiasm and camaraderie of your peers, passing on the knowledge and sharing your predictions of what's to come; the drinks, the laughs, the mates. On other days, I would have nobody to go with and I would make my own way. At such a young age I felt like a stowaway, not many friends had any affection or affiliation with Leeds; sometimes it was just me, alone - it was like my own statement of independence - and it felt brilliant! 

A bus from my place to Milton Keynes, the National Express 561 service to Leeds, then a walk from the coach, down to Elland Road with just enough cash for a pint in The Peacock, before that familiar journey back down south, with the thoughts of the game rattling around my fuzzy head. Often, I would have shouted myself hoarse and by the time I got home I would be absolutely shattered, but I'd still be unable to resist the lure of Match of the Day, savouring the chance to go over and analyse what I'd seen that afternoon. Gary Speed's goal against Derby to make it 3-0. Those moments.

The away days were a different proposition altogether; it was like being let off the leash. As a supporter, many such trips were the best of days, I even had the added luxury that at times, I didn't have to travel as far. So whether it was getting off early at West Brompton tube to go for drinks before a Chelsea fixture, invading the pitch dressed as a banana on a final day trip to Highfield Road, or the short trek from the retail park in Northampton to get to Sixfields, twice in one week. Those away days, and so many more were ace, and I walked to every one of them.

But times are changing for me. The spontaneity of the walk to the game is no longer a viable option; there are no more pub crawls or relying on public transport to hop on and off of. Practicality dictates my plans these days. Every home game, I try to get to the Wesley Street car park early and secure a spot as close to the bottom as possible, just so I can get to my seats in the East Stand quickly, and in the fewest number of steps possible.

These days I also find myself the mentor. I'm a Daddy and I have my girls looking up to me as the one to tell them all that’s going on at the football. I'm the man, apparently. I've always been a big advocate on social media about getting young ones to football regardless of club, so to abandon Elland Road would go against everything I feel and stand for. Nevertheless, I do travel there now in the knowledge that my match day experience can no longer be what it once was.

In truth, I wasn't the first to notice the profound effect my muscular dystrophy was beginning to exert upon me, it was my eight year old daughter, Olivia. It was earlier this year when Huddersfield were the visitors; for many it was a game that evokes fond memories, a five goal victory representing a high point in a largely desperate season. Olivia was very much of the same mind; as the goals flew in, she was going crazy, absolutely loving it. Up and down she was, singing and dancing - a fantastic sight to behold.

Then, after Mowatt's goal, the fifth for Leeds, she turned to me and said: 

"Five goals, Dad…and you haven't stood up once! You've always said Leeds fans stand and sing, they never sit down!” 

The fact of the matter was, I simply wasn't physically able to do so. I felt that all the energy I had, I needed to preserve, just for our walk back to Wesley Street. Olivia’s comments…they were not something I reacted to on the day, but those words have since gotten under my skin, have kept me thinking and ultimately stiffened my resolve to remain determined and persistent, regardless of my circumstances.

Sadly, I have to accept that those cherished away days are something that I must now almost totally consign to the past. I cannot predict that other grounds will have handrails en route to the seats, or something for me to lean on - simple things like that. Not every club has such an accommodating disabled liaison officer as Leeds United do either. I have still had a few away trips in recent times, thanks entirely to friends and contacts at other clubs knowing about my condition, but the undeniable fact for me is that climbing steps is just no longer a practical option. Abandoning Elland Road however, that remains out of the question.

I refer to my own condition as 'My Muscular Dystrophy’, because from what I've seen, many other people with the same condition have been affected in far more debilitating ways, so a lot of the time I actually feel extremely fortunate. While I have no idea what the future holds, what I do know is that right now, I have an opportunity, a chance to raise awareness of this condition for younger families, and in turn, raise some funds for vital research. 

Between the 24th and 30th August, people all over the UK will be volunteering and fundraising as part of the ‘Move a Mile for Muscles’ campaign; those involved will be doing so in a multitude of different ways, whether swimming, juggling, rowing or whatever else they should choose.

Inspired as I am by my daughter’s words, to not give up on watching Leeds United, I only felt it appropriate that my own challenge should represent that. So for one day, I plan to abandon the relative comfort of the short journey from Wesley Street to the East Stand and instead, walk a mile to Elland Road, to watch my beloved Leeds United, and I want to embark on that trek with as many of my friends and fellow fans as possible. 

it takes 200 muscles to take one step, what if those muscles are deteriorating or maybe not there at all any more? I can hardly walk 10 steps without feeling the pain immediately. The fear of falling, fatigue and burning I feel in my thighs, hips and lower back is indescribable and there will be so many messages from my body telling me to stop... I won't. 

This will be my marathon, my Iron man, my Mile for Muscles.

I really would appreciate it if you could do this with me… Marching On Together!

You can read my JG page and donate  here

Join us at Holbeck Moor park, 12:45, Saturday 30^th August. One mile walk to Billy’s statue, Elland Road.

You can read my blog at http://martinhywood.blogspot.co.uk/ also you can follow me @HywoodMartin and The Muscular Dystrophy Campaign @TargetMD on Twitter.

Driving Things Forward

As part of the Trailblazers ‘Access to driving’ investigation I thought I’d write a little about my experiences, Independence and how important it is.

Limb Girdle Information Day.

On Saturday 14th June I attended my first Limb Girdle Muscular Dystrophy information day in Daventry, Northamptonshire.

The Tonic.

The 1^st of June through to the 7^th of June marks National volunteers week at the Muscular Dystrophy Campaign. All week people have received calls from the team, messages of thanks, gratitude and sheer amazement at the lengths people go to to help the charity.

I received my call from Sara Wilcox, it was humbling and appreciated. Now I want to tell you a little about why I do what I do…