Progression

“Progression” or “progressive” are words that have been associated with me for many years now. They are a description of my condition and also those with other forms of muscle-wasting conditions, “The muscle weakness is generally symmetric, proximal, and slowly progressive…” Just lately this has rung very true. I have noticed through self analysis that my feet and legs shake and turn in as I walk and my enthusiasm for walking any distance or exercise that may be considered vigorous has been next to nothing. That’s not all, fatigue is having a massive impact and I become exhausted very quickly plus I am using my very shaky right hand to help my very shaky left hand get a cup to my mouth and so on… I know all this because it affects me daily and I’m trying my best to stay on top of it all. Right now, as I’m writing this, I’m trying my best to keep warm and insulate myself due to my body’s thermoregulatory system not operating efficiently, I can feel my shoulder blades rubbing on the back of my shirt. This may sound bad but then again it may not sound bad at all. 

I was recently interviewed on the radio and I used a big cliché “If life deals you lemons, you make lemonade” and as awful as that sounded at the time it is very true. A positive mental attitude is something I’ve been gifted with for years and I’m very grateful for it. 

So what do we do in times when social media is both debauched in movement and becoming diluted because it’s being flooded with everyone having narcissistic tendencies? Everyone is labelled, has issues and wants to float to the top and all I want to do is tell people how they can help others. We now live in a culture that has a lust for likes, favourites, comments and retweets and indeed most things are relative to the messenger if you’re in the world of blogging, Facebook, Twitter, Pinterest or any other form of ‘sharing’ to make a point and spread a message.

Without sounding too Einstein or Newton, by relativity, I mean someone who blogs about the difficulty of recapturing the natural movement of what the body was built to do (me!) compared to say someone who writes about the logistics of the London Tube but wants everyone to see their work, spread this and talk about it too. That is how it’s relative and relevant, trying to grab that five minutes of social media air time before it becomes tomorrows metaphorical chip paper.

As you can see it’s competitive beyond recognition now, some things that create waves are born out of something quite flippant, sometimes ignorance or by complete accident. Everyone’s timeline is riddled with embedded videos now as many individual, original and organic ideas are gone. It’s easier to hit share and take the kudos for somebody else’s misfortunes or something amazing that the original poster created.

This then leads me onto a case in point, this week a petition to reinstate a TV presenter outweighed that of one to end Female Genital Mutilation or indeed help save the NHS by a big margin, which actually made me feel a little lost. A hole had formed because of what others thought was imperative compared to what I thought should take precedence and be sat on a pedestal of importance.

Everyone wants to be heard, please don’t get me wrong, I am a fan of social media, I’m just not a fan of the way that it’s going and I am more than guilty myself of posting pictures wondering what peoples perception and  reaction may be… “Roll up, roll up… here’s a picture of me looking daft with a baby kangaroo in a zoo! How many likes for this?” with every effect that Instagram has to offer, a sure shot for 20 Likes instead of using it effectively to share pictures and moments with family in far away countries or vice versa.

So to carry on from the first two paragraphs, as I fade and get worse I’ll be relying on walking apparatus, power chairs and eventually dealing with major paralysis. Some might say this whole blog is in fact an oxymoron in itself because I want others to know about my condition and I want people to talk about it a lot and therefore raise much needed awareness about Muscular Dystrophy.

I’m not sure that will happen, we do live in a time of fast progression of many things including the rapid evolution of social media which seems to be, for some, a journey of narcissistic voyeurism rather than a contribution to many much needed solutions.

You can follow me on twitter @HywoodMartin

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