The Riffs

I’m not sure where or how it started but I know it was in the early eighties at some point that I became obsessed with Reggae and SKA. Many things could have been the catalyst; Gregory Isaacs Night nurse album on my cassette player; finding and purchasing a vinyl copy of ‘The harder they come’ at a middle school fete, was it the hand-me-down singles of the fluctuating two tone era, or indeed the release of ‘Legend’ by the late and great Bob Marley? Whatever it was, it gripped me and has since been my genre, my forte when it comes to music ever since.

So it’s very fitting that the first ever interview with a band that I do is with people that do exactly what I love and it wasn’t easy for me because the distractions of the bands sound check were fantastic and I just could not dismiss them.

The Riffs will be our headline act at ‘Music For Muscles’ on 30^th August this year and last Friday I caught up with them to find out why they consider it important and the significance. It’s about 21:00 and I’m talking with Greg Tilley; the bands manager. The Riffs first gig was on March 26^th 1989 in the new Pegasus public house, 73 Green Lanes, Stoke Newington supporting, The Loafers. The band members have changed a few times but the music remains the same and it’s great. Like me, Greg reminisces about listening to two tone and reggae that was around in the eighties, and with that came the curiosity to go backwards and find out the origins of this great sound. As we’re talking, in the background I can hear ‘red, red wine’ being sung by Tony Tribe, which is exactly the sort of original that we were both referring to.

I was chatting with the entire band whilst a sound check was under way and it was very clear and apparent that these people were listening to the same things as me growing up and influenced in the same way except one big difference, they got up and learnt to play an instrument or stood in front of a microphone and sang.

During the 70’s and 80’s there were changes in this branch of the musical tree. SKA was original, the precursor for Reggae but pioneers like Island record’s; Chris Blackwell began to champion the genre and make records that were more popular with the mainstream British and American market. Some might say Reggae had been diluted to become acceptable but Blackwell had achieved what he had set out to do and that was put more Jamaican records and artist under our coffee tables and onto our 45 players, having mixed it to sound more Pop and Rock and to therefore make it more acceptable to a global audience.

With that, like anything, there will be contingents that go back to originality and strip it back down again; with attitude too. The likes of ‘The clash’ covering Junior Marvin’s ‘Police and Thieves’ and Stiff little fingers covering Marley’s ‘Johnny was’ , more rebel music, two genre’s of music that went hand in hand. So with all this influence and people like Blackwell making this music easily available it is no wonder that we had a big rise in SKA, Reggae and Two Tone.

This is why we have bands like The Riffs, a passion to play what they love and believe. Not forgetting of course how much fun SKA is. You cannot beat that beat, the sort that will make you bounce to the bar rather than walk. These sounds that will make you smile from ear to ear. That’s why I’m here listening to one of my favourite local bands because all that’s gone before is played out on a Friday night in front of me and its ace!  A combination of the melodic sounds of reggae, the hard working, Trojan like punch of SKA with a little touch of punk attitude.

The Riffs are not a covers band; they play some great, original stuff including a ode to Mac the Sax, A former Saxophone player for the band that unfortunately, passed away too soon. The song opens with Spenny (Lead vocals) singing from Mac’s perspective and asks “enough about me, let’s talk about you” which tells you a lot about the ethos of that man and indeed the band as a whole.

It’s that selfless attitude that puts me here in the first place and leads me right back to the start of this, giving me the opportunity to explain why this band will be our headline act at our unique event in August.

On 1^st September last year I had just finished my challenge to raise awareness and funds for Muscular Dystrophy UK, this being a condition that I have. I immediately needed a new project because this is what keeps me busy and is my tonic. So I had this idea to have a physical sporting event during the day and then a music event in the evening. Until now I haven’t explained that I have known Joel, the riffs saxophone player for some years now and it was as I’d finished last year’s challenge that Joel told me his son, Finley had been diagnosed with SMA (spinal muscular atrophy), another form of Muscular Dystrophy.

As I mentioned, I spent most of the evening talking to Greg about the band and his words were the same as my thoughts. We must do this; we need to raise funds for research for treatments and another important factor is to make sure our friend knows that we are there for him too. Any diagnosis of any condition can make you feel very lonely and personally I think that’s criminal. I thought the least we can do is help with that and show some loyalty and solidarity through tough times.

As for the distractions and the things that made this hard well they’re back as I try to wrap this up and conclude. The band finishes the sound check with a fantastic version of Johnny Too bad, by the slickers. Like I said, you’ll smile from ear to ear.

Thank you Greg (Management), Spenny (guitar, vocals), Steve (keyboards), Duane (Bass), Clemmy (Drums), and Joel (Saxophone and Friend)

The Riffs

 

Music For Muscles - Catch The Riffs playing at the Aristocrat, Aylesbury, 30^th August 2015.

You can join us on facebook here.

Visit The Riffs website here. 


"One good thing about music, when it hits you, you feel no pain" 

- Marley.

Count Me In

Over the last two years I've taken part in Muscular Dystrophy UK’s ‘Mile For Muscles’ event and I have to say, I love it. Hundreds of people all over the country move an extra special mile between May and September to raise funds for vital research and support for families affected by muscle-wasting conditions. This summer I plan to do the same and I’m inviting you to come with me and this time it’s going to be an adventure that together we’ll never forget.
Myself and my older brother both have a condition called Limb Girdle Muscular Dystrophy. As you may well imagine I love my brother to bits but I don’t like how the condition is affecting him, he is getting weaker and it’s becoming quite evident as he relies on his power chair to get around. There is an expectation that I will deteriorate too, that this is how my life will be and what I have to look forward to. We’re not alone; over 70,000 people in the UK have a form of Muscular Dystrophy including families I know well. These conditions are devastating and like the last two years I’m not prepared to just sit and watch people that I love deteriorate. I’m Martin and I’m here to help the best I can. 

On the 22nd March 2015 there was a lifeline appeal on BBC One hosted by Sue Barker, MBE. Sue Barker is the Charity's President and just a fantastic person whom I was very lucky to meet. During the appeal Sue told the stories of seven year old Abbi Bennet and Jonathan Gilmour, both of whom are living with different types of Muscular Dystrophy.
“Every step you take is powered by your muscles, but there is a condition that can turn even the tiniest movement into a struggle. It’s called Muscular Dystrophy and it causes the muscles to get weaker and weaker over time: for many that includes the muscles that allow the heart to beat and the lungs to breathe.” – Sue Barker MBE.

The stories were very emotional and although about very different types of the condition, they rang true with me and felt especially close to home: those loved ones talking about family and also Jonathan addressing what I think is important, inspiring you to do your best to help yourself and also look out for the next generation. For me this is an opportunity to help those that, in the future, may be less fortunate than you. 

I honestly feel that we have one chance whilst we're here on earth, that it’s very short and everyone should do their best to make an impression, leave a footprint which says “I was here - and it was bloody fantastic!”. I’ve tried to do that, to help as many people as possible just by telling others about Muscular Dystrophy, sharing with them the story of my diagnosis and how my life has changed for not just myself, but my family and those around me too. It’s not all bad and some of that is because I started to write and it’s great. The internet is a platform that I never thought I’d be on but I am and I love it here! 

I am a dad and I have three wonderful girls that look up to me and I know I’m supposed to point them in the right direction and give them a thirst for life, make sure they know that if
It throws you a curve ball that you’ll hit it back regardless. I want them to grow up believing that every hurdle that is put in front of you, well then you jump it and set yourself up for the next, however high
.
I’m also supported and have been for years by my wife, Michelle. Michelle has such a willingness to help others it is unreal, a very selfless and thoughtful person who I couldn’t do without.
I’m not scared of pain, I don’t really fear much if I’m honest. The one thing that does scare me though - in fact, it petrifies me - is not trying, or making any effort and I can imagine that would come with regret too which is something I would hate. I wouldn’t want regrets because I haven’t done something that I probably should of, or even regrets because I haven’t done something that I probably could of. 

There’s too much focus and emphasis on what people don’t have and what they wish they could do and the same could be said of me, sometimes by even focusing that way you forget what you do have and forget what you can do. 

Right now I can still walk and I get out and about and it’s invigorating and refreshing. I may not go far and I may not go for a long time but I do get out on my own legs. I know this won’t last for long and as I said earlier, I’m not scared of much, not even losing the ability to walk. I need to be able to look my girls in the eyes one day and say “Daddy has done all he can, I’ve tried and I’ve had a great time along the way”… 

So now you know that I’m ready for life’s challenges and my attitude is a very upbeat one, I want to tell you our plan and how we’ll need your help. 

On Sunday, August 30th I have organised and plan to take part in a relay. This will be a very special relay over the distance of a marathon. Over 26 miles, over 30 participants, raising huge awareness and vital funds for world class research into muscular dystrophy. A marathon of miles for muscles – A very unique event, an orange relay never been seen before. The day will also consist of a festival of music and entertainment which is free to all. The organisation is coming on very nicely albeit lots of hard work but I’m sure it’ll be worth it. 

We have to do this, we have to help people like my brother, Abbi and her family and we need to make sure that we are fulfilling Jonathan’s request to look out for the next generation. It’s something so very little… 5,280 feet, 1,760 yards, about 1,609 metres or indeed one mile. Could you take on one of the 26 miles for us? Could you help me to help others? Help with vital donations?
That’s the question I’m asking of anyone reading this and that adventure that I spoke about at the start of this, well that starts here and now…

JUST GIVING PAGE  

30/08/15, Aristocrat public house, Aylesbury, Bucks, HP21 7SZ. 12:00.

Please 'Like'our page on facebook here and follow me on twitter @HywoodMartin
#MileForMuscles
#CountMeIn


TEXT:-  MMFM92 
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To:-       70070

              

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



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