Introducing the relentless Mr DMD

I don't normally like to anthropomorphize DMD because it's not a person but if it were it would be like this.

D= “So you're a little kid, you seem happy, well not for much longer. You can walk and sort of run, but no jumping for you.”

Me= “Why?”

D= “...because I feel like it.”

(not going into the real why, it's complex and DMD wouldn't care anyway)

Me= “Can I keep playing?”

D= “For now, but I'll be back soon.”

A few years later.....

D= “Right, this walking must stop and get used to barely standing for a few months then wheelchair time.”

Me= “I'll get used to it.”

D= “That's what you think, ha ha”

Me= “We'll see.”

A few years later

D= “I've had an audit, you're enjoying that wheelchair far too much. Your arms must stop working now and just limply sit on the table but a little hand movement is permissible, hey, you might keep that function awhile.”

Me= “How generous, not.”

D= “Don't say I don't take things away, wink.”

A year later

D= “It's that time again, no more straight back for you, lets get twisty with Mr Scoliosis.”

Me= “Don't you ever stop?”

D= “I'm nothing if not consistent.”

D= “By the way, you'll have painful x-rays and you'll miss that surgery not before you think you're having it and crying first.”

Me= “I'll cope, that new game will distract me.”

D= “Well in due time we'll discus that.”

A few years later

D= “Well here we are again, you're getting too used to me. Shallow breathing and gradually losing your cough will be sufficient for now.”

Me= “Let me rest, please”

D= “No, you can't escape.”

Me= “grrrrrr”

A few months later,

D= “So you're 16/17, well, what a year is in store for you, that cold will turn into pneumonia and after 4 delirious days awake you'll go to hospital (3 times) and intensive care at that. You'll end up dependent on overnight ventilation and needing a mini tracheotomy just to survive. Also you'll leave school and I won't let university bother you either, I'm kind like that.

(many with DMD do go but my personal situation prevented it)

Me= “Oh why, that is mean, but at least there's solutions and I'm able to play my computer games.”

D= “For now.”

Around 19 now

D= “Let me make your eating hard and swallowing difficult very gradually so you don't quite notice ….”

Me= “What were you saying, I was playing a soccer game.”

D= “You'll see”

Early twenties now,

D= “Let me throw worries, depression and relationship difficulties in at you just for fun. Also say bye bye to that computer console gaming it's just PC's now.”

Me= “That's a really tough one for me, but I'll just use PC gaming and find art programs and DO something.”

D= “For now”

Mid twenties now

D= “Your heart is bad, I hid that well, but more hospital for you and heart medications a go go. You'll find out you're only 6 stone in weight and skeletal looking. You'll need that ventilator more during the day.”

Me= “I found pureed food so stick that silver lining to ya forehead. Plus I'm over 8 stone now.”

(Stone=14 pounds)

Present day around 32 years old.

D= “small hand movement draining away – check”

Me= “Using eye gaze mouse.”

D= “ I know you're scared of losing the ability to make art, so I'll toy with your head. Suctioning will take an hour every time well nearly every time, there's leeway. Also you'll be craving tracheotomy changes every month and get frustrated about your chest filling up. You'll need that ventilator 23 hours through nasal pillows and full face mask, possible feeding tube and full tracheotomy ventilator needed in near future.”

Me= “I will fight that all the way. Hopefully I'll adapt better than a borg :)”

D= “You'll look like one too”

Me= “Hey, I'm not that pallid. :P”

D= “Eventually you'll expire and death will strike.”

Me= “You'll expire someday soon. Sooner than you think.”

This is how vindictive DMD is and it's relentless. It's constantly chipping away either covertly or overtly. It's a different variation to the spoon theory of disability, because those affected constantly lose spoons with DMD. Those affected don't know how many spoons they'll get tomorrow. I hope you can understand its constant progressive nature. Thankfully faith and hope gets me through along with wonderful friends and a beautiful family.

P.S.

Don't feel guilty for laughing at the funny bits, I'm not all doom and gloom.

Duchenne Awareness Day

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

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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

The DMD balancing act

FREE ebook offer still on!!!!!! 18 days left!!!!!

Last night I had tremendous difficulties trying to move my wheelchair. I have a very light control which is very easy to move but I simply couldn't operate it at all. My arm was tired because I'd been typing with my mouse. Only when my arm was moved could I just barely move and get to bed.

Those moments are very worrying as you feel out of control. Thankfully because I have voice recognition I can do my work on these tired days. Perhaps I should have used it but sometimes quietly typing helps me express myself better. The DMD balancing act goes on!

I remember in school how I used to be able to eat a snack at break time but then it took too long. DMD certainly is relentless

Extract;
...A short recess was always taken at quarter past ten that lasted 15 minutes; I used to eat a small snack that was until it took me longer than a quarter of hour to eat it!...

Read more about the constant DMD balancing act in my book DMD LIFE ART & ME!

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