Inspired Life-DMD Life art and me: September 2015

Wednesday 16 September 2015

Where advice falls apart

Lately whilst reading news online I've seen plenty of advice columns with headlines along the lines of this;

WALKING REDUCES HEALTH RISKS UP TO 30%

I find it slightly amusing with a mixture of ennui when I read things like that because obviously I can't walk. I feel concerned briefly about my health but then think my health is already severely compromised. Advice like this is for the vast majority of able bodied people and often is helpful for those who are health conscious. It only reminds me of what I can't do and offers little in the way of useful practical advice.

This was brought to the fore recently when I was looking for advice to alleviate insomnia. I was fed up of being awake when I needed desperately to sleep. The most common advice was to get out of bed after twenty minutes and walk around and do something. Virtually impossible for me unless I wake up my mother and bother her which I am not doing because I don't want to transfer my sleeplessness to her. My mother needs her sleep far more than I do, so invariably I lay awake for one to two hours pleading for sleep to return. I looked some more for advice and reading or writing a journal came up, both impossible when I'm on a mask connected to my ventilator in a dark room without my glasses and “paralysed” from DMD.

Finally I found mental approaches which I tried but were ultimately unhelpful. The most helpful thing was shown to me by my massage therapist Tracy who taught me a technique of rubbing the tips of my thumbs. This encourages the release of melatonin which helps you naturally fall asleep. I have just enough movement in my left thumb to accomplish this feat and it's been partly successful some days better than others. This technique in conjunction with prayers has definitely helped me and I'm thankful for that.

Often when coming against difficulties the advice is mostly framed around moving or doing physical things, which is not applicable to those with severe disabilities which restrict movement. You definitely need to be resourceful in this situation and use mental solutions where possible. Maybe advisers need to open their minds to those who cannot use physical solutions and come up with alternatives and truly think out of the box instead of using that term for something meaningless.

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/

My art can be viewed here; http://www.redbubble.com/people/thebigg2005

Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time

Thursday 10 September 2015

Things not in textbooks

Things not in a textbook

You often see the usual statistics about Duchenne, for instance 1 in 3500 births, weakness, wheelchair by roughly age 10, ventilator use in late teens or twenties and eventual death (a very abridged version but all the essentials). There's so much more to it than that, so much left unsaid.

They never tell you how difficult making friends will be, I am very fortunate to remember at least one close friend throughout my life periods but the vast majority are acquaintances. I remember trying to get back in contact with some school acquaintances and a visit was arranged the excitement grew and grew. After I left secondary school I had few visitors so I was looking forward to it but alas all fell through and I never heard back from them...ouch.

Also they never say how you are meant to pass your time when you face constant mobility decline. For children with DMD they often watch friends or acquaintances play and ache because they cannot. You have to learn to play by yourself or come up with novel ways or joining in. Imagination is definitely needed I loved playing with my cars and games consoles also greatly helped. Staving off boredom and thoughts of negativity becomes increasingly difficult when the pool of things you can still do shrinks. I'm very thankful for technology because without which I would be very isolated.

Another thing I never expected is what swallowing issues actually mean, you can definitely get used to pureed food if of course you can still eat. In my case it also means I can't swallow saliva very well so I end up constantly drooling usually on to pieces of kitchen towels. Delightful isn't it? I jest. Drenching my tee shirts every day especially first thing in the morning is tedious and often makes me feel disgusting. Choking on saliva is scary because I'll need suctioning to clear my airways very quickly. I mostly try to ignore all this because I don't want to be caught up in self pity.

One other thing which isn't apparent at first is how cold you can get I've noticed this more as I get older and physically weaker. I am covered in blankets winter to summer and my parents pay a small fortune in heating the family home. It can take hours to get suitably warm and seconds to quickly get bone chillingly cold. I remember having a newspaper photo session done outside in September with not as many blankets as needed. By the end what little movement I had evaporated and it was impossible to drive my wheelchair it was very disorienting and it took all day to warm up!

Finally you'll never know or maybe it's just me, how to make difficult decisions especially medically. When I went into hospital in 2001 as a naive teenager I never expected to leave with a mini tracheotomy let alone need it for the next 14 years but that decision was made for us by a mucus plug nearly killing me. When trying to assess the need for a feeding tube I ummed and ahhed and a doctor acted quickly to get me in for one, it was an horrific time, I had to fast before it and they kept me waiting so long I felt very close to respiratory failure even whilst on my ventilator. And to top it off it was impossible to fit one because I was too badly twisted up from scoliosis and couldn't lie flat on my back. Later a surgeon assessed me and if they put me under a speedy general anaesthetic it could be done, that decision is still pending and I don't know what the right decision is because thankfully I can still manage pureed food.

The latest huge decision is when or if I should elect to have a full tracheotomy to allow me to continuously use my ventilator. I have been told that for periods I could be “cuffed” which means I could not speak which greatly concerns me. Hopefully I will still be able to talk but would you want to lose you're voice even for a little time? I know many who do talk with full tracheotomy ventilators but I'm not them I don't know how it'll turn out after the procedure. Then there is the criteria for making such a decision, should I go by arbitrary figures like forced vital capacity or when non invasive ventilator settings need to be constantly altered. Or should I go by how I feel because when I'm off my mask/nasal pillows to have meals and get out/in of bed I'm finding it hard. I increasingly gasp for breath whilst getting really warm because of the breathing exertion. Being hoisted really makes me agitated especially in the morning I feel like I'm suffocating but thankfully that isn't everyday. So there you have it my dilemma and those things not in textbooks. None of this is a pity party I'm just informing you of reality for myself.

Monday 7 September 2015

Duchenne Awareness Day

Today is Duchenne Awareness Day and as some may know I'm living with Duchenne Muscular Dystrophy myself. It's a devastating life shortening disease that affects 1 in 3500 male births and through a rare process called skewed X inactivation some females develop it too. DMD is caused by a damaged protein called Dystrophin which is located in the X chromosome hence it mainly affects males.
Without Dystrophin muscle cells eventually die and get turned into connective tissue and adipose. This has terrible consequences on the body, starting with weakness and fatigue leading to wheelchair use at 8-12 years. As it's a progressive disease it doesn't stop there, the arms and upper body start failing in the teenage years and then the heart and lung muscles are affected leading to eventual death which occurs on average in the mid twenties although it can vary depending on individual circumstances.

Pretty grim reading.

So what is it really like living with this disease I want to share three perspectives siblings, parents and myself as someone affected by it.

Siblings:-
They watch on as their affected sibling gets weaker often not knowing what is going on until later on. They can miss out on valuable time with their parents and often worry about their sibling. It's definitely hard on them too. I have sometimes felt sad that my sisters may have missed out but our parents tried their best to share their time. My mother is prominently caring for me so mother daughter time is obviously diminished but they do what they can. Siblings are often really caring and they'd do anything for their affected sibling which is admirable.

Parents:-
They get a devastating diagnosis day and often the mothers blame themselves for their child's illness, but it's not their fault because we have no idea what damages the dystrophin protein. It's hard on their marriages sometimes leading to divorce but often it can galvanize a relationship as they have to rely on each other. Financially it's very difficult because housing must be altered for wheelchair access, new vehicles must be purchased for wheelchair access also, electricity bills can increase because of medical equipment and heating bills are high because of poor circulation. Physically it's difficult initially lifting their children until hoists take over but eventually their doing personal care, having chronic sleep deprivation, operating life saving equipment and generally doing everything their child needs being on call 24/7. Their in a living grief anticipating the eventual death of their child but some deal with it better than others but that's not to point fingers. My parents are incredibly positive and that definitely rubs off on me.

Affected individual:-
I never had a specific diagnosis day but gradually on my own terms when I was curious my parents and the internet gave me the knowledge I needed over the course of 15 years. I'm still learning about DMD because it relentlessly steals abilities and you never know what is next to go. As of now I'm 31 and I'm a virtual quadriplegic but I can still feel things. I'm reliant on a non invasive ventilator to breathe 21 hours a day and I'm on heart medication because I have cardiomyopathy. I have a twisted spine which makes getting comfortable very difficult often very painfully so. I've felt sick with back pain thankfully not often. I have no effective cough so I've had mini tracheotomy for 14 years to allow me to have suctioning to remove mucus. I struggle to swallow so require pureed food. My hands are severely contracted into fist positions and I barely have ability to click a mouse, typing this is tiring, painful and has taken almost 3 hours.
Things I miss, I definitely miss giving hugs to people, being able to care for my physical needs, I miss pastry, bread and textures in food, being able to scratch an itch, playing with and holding my 3 nieces and nephew and being truly alone outdoors. It's definitely a relentless all encompassing disease that I wish never existed. I can do many things despite this disease for instance I wrote a book and I'm a digital artist. Faith is extremely important to me and gives me hope of a future cure for ALL diseases. Never give up hope.

I hope this has been insightful.

EBOOK available here; https://www.smashwords.com/books/view/69702

Available on Amazon USA here; http://www.amazon.com/DMD-Life-Art-Ian-Griffiths/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288120811&sr=8-1

Available on Amazon UK here; http://www.amazon.co.uk/DMD-LIFE-ART-AND-ME/dp/1907652337/ref=sr_1_1?ie=UTF8&s=books&qid=1288105302&sr=8-1

My new Ebook Poetic Diversions available to buy here; https://www.smashwords.com/books/view/206857

All links available in my website here; http://duchennemen.net16.net/Buy-my-books/

My art can be viewed here; http://www.redbubble.com/people/thebigg2005

Foreword

I’m Ian Griffiths from South Wales. This book is a story of my life so far up to the age of twenty five years. I live with and suffer from the ill effects of DMD which stands for Duchenne Muscular Dystrophy. It is a severe muscle wasting disease and a life limiting terminal illness. It won’t kill you in six months in the traditional sense of ‘terminal’, but it’s far crueller than that, it steals every muscle in your body first and then kills you, anywhere up to the age of thirty. There have been cases of men living past that into their forties and fifties but only with drastic interventions such as ventilators and tracheotomies, more on this can be found by reading on.
I hope to cover a few things in this book, from a history of my childhood years to a more detailed history from sixteen years onwards and finally onto my current problems and triumphs. At times things I write may make you smile or may make you pause and think about the seriousness of life with this devastating disease. I really hope there will be a cure but currently for us supposedly ‘older’ guys with DMD (over twenty one), there seems very little hope. If I don’t see a cure in my lifetime, I hope my campaigning helps in some way bring it about for future generations, so another child won’t have to see their body wither and die before their time

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