Determination

Growing up, I lived on a housing estate called Walton Court in Aylesbury, Bucks. Walton Court was born in the 1970s as part of a major housing expansion. The land had formerly been farmland, and for some time the privately owned housing area was known as Walton Court Farm, after the estate.

With the new expansion of what some might call a red brick and concrete jungle came neighbours, young families from all over the United Kingdom, all on the social housing ladder. The Hywoods (my family) lived next door to the Potts family and we all got on extremely well, just like one big family actually. Caroline was the middle child in the Potts family and despite growing up and growing apart, location wise, we are all still very good friends. Caroline has always been an advocate of my ability to raise awareness about disability and is very vocal to support myself and others. However, Caroline also thinks that I do not tell people about myself and my condition enough and all the hardship that comes with it. In fact I told Caroline I was writing this, a blog about living with Limb Girdle Muscular Dystrophy and my determination and she said “Tell everyone what you go through, for once! No holds barred… Don’t play this down and please be completely honest and I know I’ll love it and I think people will too... Tell them, tell them everything."
I took all this into account and the fact that I still have very good friends asking "What is Limb girdle muscular dystrophy?"

So, here goes, I’ll start with the facts…

Limb-girdle muscular dystrophy (LGMD) is a genetically and clinically heterogeneous group of rare muscular dystrophies. It is characterised by progressive muscle wasting which affects predominantly hip and shoulder muscles.

LGMD has an autosomal pattern of inheritance and currently has no known cure.

The term limb-girdle is used to describe these disorders because the muscles most severely affected are generally those of the hips and shoulders—the limb girdle muscles.

Symptoms of limb-girdle muscular dystrophy vary widely, but most commonly are muscle weakness and atrophy, myoglobinuria, myotonia, elevated serum CK, and, in ~20% of cases, cardiomyopathy.

The disease inevitably gets worse over time, although progression is more rapid in some patients than others. The disease commonly leads to dependence on a wheelchair within twenty to thirty years of symptom onset, but there is high inter-patient variability, with some patients maintaining mobility.

The muscle weakness is generally symmetric, proximal, and slowly progressive.

LGMD can begin in childhood, adolescence, young adulthood or even later. The age of onset is usually between 10 and 30. Both genders are affected equally. When limb-girdle muscular dystrophy begins in childhood the progression appears to be faster and the disease more disabling. When the disorder begins in adolescence or adulthood the disease is generally not as severe and progresses more slowly.
In most cases, pain is not present with LGMD, and mental function is not affected.

Symptoms – a person with LGMD generally has difficulty walking, going both up and down stairs and raising from a chair or a squatting position. Difficulty bending over and falling on a regular basis are also common. Difficulty lifting certain objects is also a common presentation of LGMD as well as difficulty holding your arms out or above your head. Eventually the ability to walk/run deteriorates. It is advised that someone with the disorder not put themselves in situations of potential peril. For example, walking on floors that have even the slightest incline can cause the individual to lose balance and fall. It is not recommended for someone with the disease to walk on terrain which is not stable such as ice or other slippery surfaces to avoid a severe injury. This is mainly due to the fact that LGMD weakens the leg muscles so an individual with LGMD would be more inclined to fall than someone who does not suffer from the disorder. At times, heart palpitation can occur.

So that’s LGMD from a factual perspective and that of wikipedia, what about the patient, those affected including partners? Some might say the harsh reality.

Despite the facts saying that a sufferer of LGMD would hardly ever feel pain from the condition, I’ll beg to differ. I push myself a lot to keep on top of this and to try to stay as mobile as I can for as long as I can. With that in mind imagine going to your gym and working your thigh muscles (Quadriceps Femoris) to the point of a severe burning sensation, well that’s exactly what LGMD feels like constantly due to the lack of hamstring (a group of three muscles called biceps femoris, semitendinosus, semimembranosus) that has deteriorated and is now no longer effectively working, therefore being compensated by the thighs. The same can be said for the neck muscles (trapezius muscles); it’s a constant pain that feels like a burning or needling sensation.

There are other inconveniences too that are not mentioned. A shortness of breath, constantly unsteady on my feet with no confidence out and about and around other people and just the feeling of wanting to stop or at least slowdown in so many respects.

Then there’s the personal stuff. I’ve never lifted my youngest daughter, Skye (4) up. In fact both our youngest daughters have always been passed to me. I’ve never carried my girls on my shoulders to walk down the promenade or the beach. I cannot run, hardly walk, and most playful physical interaction that most parents have is non-existent. It always has been and this is what hurts me most about this condition. Sometimes the best hug in the world can hurt but I never show it, why on earth would I show my three girls or indeed my wife that their love and affection actually, physically hurts me? All this and the fact my older brother has the LGMD too, I see how it advances, I know all too well what to expect.

Recently I fell down the stairs at home, from the top to the bottom. I bruised my ribs, twisted my right knee (common occurrence) and also twisted my ankle. I believe this was due to my LGMD. A little bit of bad luck. It wasn’t even one week later and I had my car stolen and a local newspaper ran a story which was entitled ‘Car theft was like stealing my legs’. This may very well sound melodramatic to someone who knows nothing of this condition but in actual fact this was very true.

As I have said, I am an ambulant disabled man, I consider myself severely disabled yet I am still able to walk (just!). I surprise my specialist neurologist every visit I have to the John Radcliffe hospital in Oxford and most days I surprise myself too.

So what can I do about this? Not much really, as mentioned there is no cure so what’s the point in trying or to keep going. Well now you’ve heard all that let me tell you…

I believe that research will soon come up with treatments for these conditions (Muscular Dystrophies), this is all my own personal feelings and I need to help fund that research if not for me then for the newly diagnosed. I am 41 years old and considering my LGMD I feel very lucky for all that I have and also all that I have done in my life. In some circumstances I consider myself lucky to have this diagnosis, it is a great platform for me to help others and that sensation is rewarding beyond words.

The awareness I raise as well as the funds raised in the events I take part in may well help a family 10 years down the line and to me, that’s more than imperative. I would never want anyone to fall down the stairs or anything worse due to LGMD.

As well as my wife and my girls affected by this condition I also have friends within the muscular dystrophy community that I like to raise awareness for too but last year some news absolutely stunned me and really knocked me sideways. I got a message from a friend and he told me how his son had been diagnosed with Spinal MuscularAtrophy (SMA) and within days I got another message from an ex-colleague whose son was diagnosed with DuchenneMuscular Dystrophy (DMD).

This was recently after I’d just finished my ‘Mile For Muscles’ and after minutes I tried to think of a way to help, a way to tell them that they was not alone and that they had a friend who had a little bit of an understanding of the conditions and what they might be going through.

There was only one thing for it… Only hours after my fundraising retirement I had to step back up to the plate. I want to do something bigger and inclusive so people could get the incredible feeling that I had. I still find it hard to put into words what finishing my charity event was like, as mentioned above, it is beyond words.

Ever since I was a child I wanted to take part in a marathon which is now so unrealistic that it doesn’t bear thinking about. So I decided to create my own marathon with my own rules and my mates are coming to help too! On the 30th August 2015 we will take part in a 26.2 mile relay. With a relay baton changing hands every mile and between two natural cheer points a group of family and friends will do everything in our power to help others and you can take part too. Then will be the very last mile and that will be mine. I promise that by any means possible I will cover the finishing mile and a life time’s ambition will be fulfilled all in the name of a great cause for great people. Get in touch on the facebook page HERE to say ‘Count Me In!’

I am very determined to keep using my stairs, albeit with more caution than ever and a message to those who recently stole my independence, I have more determination and courage than you’ll ever know or indeed probably ever have yourself.

As for Caroline ‘pottsy’ Cunliffe, I hope you’re happy and approve of this, my latest article.

I told them, I told them everything. x

Myself, Caroline, my wife,Michelle and Carolines brother, David

               

Follow me on twitter @HywoodMartin



Join us on Facebook:-

Mile For Muscles - Count Me In
https://www.facebook.com/MileForMusclesCountMeIn

Strength In Numbers

At the start of this year I had plans to raise awareness and funds for the Muscular Dystrophy Campaign. It’s what I do because I suffer from the condition and I have become extremely passionate about wanting to help. This is how our story unfolded and what we did…

Walking Football.

For quite a while now I’ve been hearing about walking football, the concept seems to have gained a lot of momentum too recently with the help of a television commercial encouraging a group to use social media to get others involved and that’s what seems to have happened.

After about the 50^th viewing, I had become intrigued to the point of wanting to see if I could give it a go myself. First step was to find out what walking football was, who was eligible and on the back of the advice of the advert I took to social media to see if there was a group or team of walking footballers near me… and there was.

I first got in touch with Aylesbury United’s walking football club on Facebook, I asked when, where and who could play? “In two night’s time, locally and anyone” were the answers. That also applied to me, an ambulant disabled man, who could hardly walk at all. 

Over the next 48 hours this was something that I thought long and hard about. I’m always pushing myself physically but I’m getting more apprehensive about being alone or without any assistance when walking or just being out and about. My balance is terrible and my legs constantly burn and feel shaky to the point of always wanting to take the weight off, even after just a few steps. Luckily some advice from my wife got rid of those anxieties in just a couple of sentences. Like every idea I have or challenge that I’m thinking about I always run it passed Michelle first and she will always comes back with a very honest opinion and in the case of walking football and my apprehension Michelle simply said “You need to concentrate on what you can do and not what you can’t, at this moment you can walk so you need to do this.” Well that was me told, wasn’t it?

18:55, a bitterly cold Monday night, in a car park next to an artificially turfed pitch.

I left the blistering warm, comfort of my car and made my way under the floodlights to meet Matt Doherty, the man I’d been talking to on social media about walking football and the manager of my local team. Matt briefly explained the rules and the fact that there was no discrimination here, it’s open to everyone but predominately over 50’s, throw in’s are roll in’s, no running, and that’s it. I initially told Matt that I would just be here to spectate as my legs were very weak and it had been a long day.

These were football supporters playing of many different clubs from Barcelona, both sides of Manchester, lots of London clubs, myself in my Leeds top and Matts very own Aylesbury United of the Evo-stik southern league. There was also a big variation in age with the players, youngest being late teens to the oldest being 79 years old.

I spent most of the game walking up and down the line and listening to all well mannered teasing, mockery in an air of persiflage. Running was definitely not allowed and it was made obvious that it would result in a free kick. I must admit it was funny seeing people trying their best not to run. One thing I must say though is that when there was a fall or a player went down to the ground then play was stopped and the players welfare was the biggest concern and taken care of by everyone, brilliant.

It was near the end, with 15 minutes to go that I felt itchy feet and an urge to get on the pitch. I couldn’t possibly call it a night without getting involved and giving it a go so I gestured to Matt that I wanted to give it a go and I was on. Left wing with absolutely no chance whatsoever for the first 5 minutes, sheer frustration. My head knew what I needed to do but my legs weren’t interested. Walking too slow and the ball went out, late kick and miss, ball went out. I just wasn’t quick enough. Eventually I got the ball a couple of times and got rid of it as quick. I felt like a funambulist with no balance bar at all, completely alone and vulnerable.

It was the eleventh hour when “Geordie” got the ball in the area, he had no room so passed it out to me, I trapped it, he moved to the room he needed, I passed it back, he put it across the penalty area and another player put it away! That… that’s what had made it all worth it and like all the others that I’d seen smiling all evening, I was now grinning from ear to ear. This may sound extremely insignificant to someone who is able bodied and plays football often but it meant the world to me.

“Same time next week?” Matt called and after that I got a picture of the teams and everyone was off. I was shattered then and I’m shattered now, still, three days later but that’s the price I pay I guess for pushing myself. It was worth it though and will now always be that way because I’m concentrating on what I can do and not on what I can’t.

You can join Matt and the team on Quarrendon astro turf, Aylesbury, every Monday at 19:00. Subs £3 and also the team face book page is here>> https://www.facebook.com/WalkingFootballAylesbury

 Alternatively just google ‘Walking football’ and your local area, I’m sure you’ll find a club.

Follow me on twitter @HywoodMartin

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