Inspired Life-DMD Life art and me: DMD

Showing posts with label DMD. Show all posts

Monday, 26 September 2016

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.

Thursday, 10 March 2016

What is it like having Duchenne's and a sore throat?

It's different for every person living with DMD but here's how it affects me. I'll be using a template from an earlier post to save tired eyes and arms.

Day one:

For a few weeks beforehand my chest was misbehaving and on this day I noticed I had a dry throat. I thought nothing more of it but gradually throughout the day it got much worse.

Day two:

I awoke hunched over with my full face mask on and it's a bad day. Mam asked the doctor to come over and when she arrived my mother took my ventilator off, moved a towel in front of my face as I dribbled on it and then the doctor examined me thoroughly and prescribed me antibiotics. I had two periods of suction as soon as I was up, in bed of course. My mother got me hoisted into my chair quickly because breathing is especially difficult when I'm ill on top of DMD.

Next my wheelchair knee pads were put into place then my mother covered my feet, legs and arms with fleece covers and put my wheelchair table on. Then she attached my wheelchair controls which are tongue powered and then I get in my elevator and went downstairs. I controlled my breathing in my lift all the way down hoping not to cough and get in a panic. Once I reached the ground floor it was off to my living room where my super mother put my nasal ventilator on and suctioned me for sixty minutes. I still haven't had a drink or food by this time because it just isn't possible while suctioning.

Once I was able to breathe without an overly noisy chest, my mother reattached my wheelchair controls which were removed for suctioning and left my nasal ventilator on as I drove into the bathroom where my mother removed my wheelchair paraphernalia and helped me use the facilities. Leaving my ventilator on whilst it's on battery adds difficulties of pipes hanging down and catching in everything but we've got a system of head positioning to help. Fifteen minutes later I was back in my chair and my mother then washed me and put my tee shirt and covers on whilst temporarily pausing my ventilator use.

After another quarter of an hour it was back into my living room where my mother set my computer up, and places a wooden block by my abdomen and places a drink on it. It was so refreshing to drink especially with a sore throat and this allowed me to take the antibiotics that my father went to get followed by painkillers. My drink was a laxative mixed with water and Ribena to mask the taste. My mother then cooked my breakfast of blended scrambled eggs and macaroni cheese (from a tin) which was also blended. As my mother prepared to feed me (my ventilator was off to eat) I needed to have suction which made my breakfast go cool but it was far more edible with a relatively clear chest. Then she gave me my regular medications followed by putting the ventilator back on and giving me a drink of water.

For the next few hours until my lunch my mother suctioned me every half hour to an hour. I used my computer to tell my friends and family what was going on and do a few important things. I was fighting tiredness whilst doing this and often dropped off into a nap as I was feeling washed out and in a daze. It was terrible feeling my chest fill with secretions and breathing through it is extremely hard. It's not great to keep asking for suction especially as my mother was very busy getting her meal sorted. I hate to bother her when she's eating because she needed sustenance and a break to rest her weary body and suctioning arm.

My lunch was served at eight at night because I'm out of bed at midday and once I was able to breathe without an overly noisy chest again, my mother fed me without my ventilator on. I controlled my breathing throughout eating because I didn't want yet more suction. My lungs ached after the ordeal they had endured so far. Once finished my mother reattached my wheelchair controls which were removed for suctioning and put my nasal ventilator back on and I drove into the bathroom where my mother removed my wheelchair paraphernalia and helped me use the facilities again. Half an hour later I was back in my chair and my mother reattached everything and got me set up on my computer until dinnertime.

My suctioning needs begin to tail off and I only have two or three more episodes before dinner. I was given more antibiotics during this time. I used this relatively calm period to do some digital art which took my mind off being ill on top of having DMD. My faith keeps me going throughout this illness because I knew and continually know that I will be free one day. However it's still mentally tough living with this monster on my back telling me metaphorically I'm going to get you!

Dinner arrives and the same routine of breathing carefully without my ventilator, eating which was fraught with swallowing issues and the toilet procedure ensued. Then back to my computer until bed time where I just relax by listening to calming music and drink my laxative laced Ribena. Then I switched my computer off and my mother and I took a further two hours to get to bed doing some suction and many other things along the way. I was hoisted back into bed which was adjusted to a sitting position, some small personal care tasks were done, my bedding was put over me and my night ventilator was put back on followed by the placement of my easy press button in my right hand. Once a few extra blankets were placed, my mother switched my light off and we told each other “I love you”. I finished off that day with eleven periods of suctioning which took anywhere from a few minutes up to an hour.

Day three:

I felt much worse this day as my throat really hurt, I even had to wake my mother up overnight to suction me in bed. My day was almost identical to the one before and even though I felt worse I only had nine periods of suctioning.

Here's what I look like being ill on this day.

Day Four and onwards:

We are now up to the present day and I'm feeling much better throat wise. I've had five periods of suction with another to come so we're moving in the right direction. Over the next few weeks hopefully my suctioning will get down to two maybe three daily periods which is normal for me. Also my throat should return to normal with no further recurrence hopefully.

Update:
Sadly my throat has relapsed and my chest shot back to eleven suctioning periods again only time will tell when this will improve. One just doesn't know what DMD has in store next for me. Keeping positive is extremely difficult when you feel unwell.

More on a range of subjects can be found out in my book;

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/buymybook.html

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

Wednesday, 10 February 2016

Different Perspectives

What's your morning routine like? Does it go something like this? You get out of bed, sloping off downstairs maybe in your pyjamas casually glancing at the time. Then you switch the kettle on or coffee maker and have that shot of caffeine, followed by a shower and getting your breakfast ready. Maybe you dressed after your shower or after breakfast and then you would start your commute and your day. Obviously everyone is little different but you get the familiar picture.

Ah, my routine, now there's a different story altogether. I awake hunched over with my full face mask on and today is a bad day because my chest decides to misbehave. So I realize I might need suction as soon as I'm up. I press the easy click button wedged in my right hand and my mother appears, then she takes my ventilator off, moves a towel in front of my face as I dribble on it, scratches my head and gets me hoisted into my chair. That takes about fifteen minutes.

Next my wheelchair knee pads are put into place then my mother covers my feet, legs and arms with fleece covers and puts my wheelchair table on. Then she attaches my wheelchair controls which are tongue powered and I get in my elevator and go downstairs. Once I reach the ground floor its off to my living room where my super mother puts my nasal ventilator on and suctions me for thirty five minutes. I still haven't had a drink or food by this time because it just isn't possible while suctioning.

Once I am able to breathe without a rattling chest, my mother reattaches my wheelchair controls which were removed for suctioning and removes my nasal ventilator. I drive into the kitchen to take my inhaler, then I go into the bathroom where my mother removes my wheelchair paraphernalia and helps me use the facilities. Fifteen minutes later I'm back in my chair and my mother then washes me and puts my tee shirt and covers on.

After another quarter of an hour it's back into my living room where my mother sets my computer up, and places a wooden block by my abdomen and places a drink on it. It's so refreshing to drink after being awake an hour and a bit. Sadly I rarely drink anything with caffeine, for me it's a laxative mixed with water and Ribena to mask the taste. My mother then cooks my breakfast of blended scrambled eggs and macaroni cheese from a tin which is also blended. Whilst my mother does that I check my emails and news on the computer. Then my mother feeds me and gives me my medications followed by putting the ventilator back on and giving me a drink of water. Only then does my day properly start after a two hour marathon. On a good day it's an hour and a half and a truly bad day it could be three!

Think about that while you're hard at work or commuting. If you feel like inviting someone with DMD to your home if it's accepted then please do! Even better ask to visit them because that will really brighten them up. If you're expecting someone with DMD for an appointment, and they ask for an afternoon slot please don't complain but help them do that. Understand the often many hours it can take to get out of the house and don't worry if we're running a little late. Definitely don't give them hassle about it because Duchenne's is hard enough without further complaints. Hopefully you'll make lasting friendships with those living with DMD and their families.

More on a range of subjects can be found out in my book;

Sunday, 7 February 2016

Constant Reminders

I like watching cooking shows or people doing things like building or walking or generally doing something productive. Which strikes me as strange because I cannot eat normal food, move my hands further than a few millimetres and definitely can't walk. Whatever I see everyday, there are constant reminders of what I'm unable to do. Most of the time I don't let the negative get in but sometimes there's a huge pang of “I really want to try doing that”, or words to that effect.

I had one of those moments a few days ago whilst watching something on social media. A young man was discussing his love of calligraphy and penmanship using actual writing implements he made himself. He was lamenting how technology is destroying traditional handwriting and argued that one shouldn't be at the detriment of the other. He explained the process of handwriting actually helping people to learn more effectively. I was really inspired but then slightly crestfallen because I couldn't do it myself.

He took ages completing school work because of this 17^th century-esque script. When I could write by hand, I took ages completing my work because my muscles were failing and I was getting pain in my whole arm. I finally had to stop and have someone write for me which was a relief and simultaneously a tiny bit heartbreaking. I'm very thankful for computers and on screen keyboards which is enabling this post but technology has its limitations.

Another similar feeling of wanting to do more hit a few weeks ago whilst attempting to do some art on my laptop. I was trying to compose an image of a field of wheat with a tree in it. I just couldn't do it to the level of detail I wanted and that familiar arm pain was nagging away as well (which it is now). I was deflated and getting depressed and just couldn't do any more art that night. I bounced back with a lot of faith and that urge to do something firing me forward. I try to keep doing things I can do until eventually they go too. I'm sure there'll always be technology and something to do, but the straitjacket gets ever tighter and then it'll be me versus my mind when my body can't do the things I'm good at. Thankfully I have great hope of an astounding future where if I make it I'll do more than I can dream of and that keeps me going!

More on a range of subjects can be found out in my book;

Sunday, 31 January 2016

10 Helpful Tips

While I constantly lose functions especially when DMD really starts biting I've picked up some tips along the way. Here's a list of things I have found useful;

Macro form filling software is invaluable especially with repetitive tasks like logging in to email and other areas. Please look at shortkeys lite for a free program that does this for you with a minimum of hassle.
On Screen Keyboards, these are like precious jewels when conventional keyboard use becomes impossible. Before this I once used a word processor and its symbol function to type words then copy and paste them into whatever I wanted. Very tedious indeed. An invaluable part of this is the predictive text that some O.S.K.'s use, which cut down on keystrokes enormously. If using Windows operating systems please look for accessibility tools and the On-Screen Keyboard, or search online for alternatives.

I've found pinning useful programs to the start menu bar on windows 7 is enormously helpful, because searching for programs on the desktop and elsewhere is physically tiring. Energy is at a premium when DMD is involved.

Eye gaze technology is the newest weapon in my personal fight against DMD. Many exist out there and this software tracks your eyes to move your computer mouse accordingly. It can even help with clicks, this is done by blinking or using a switch interface etcetera. I use a Tobii pceye go, which MDUK funded because it's rather pricey.

An environmental control is absolutely vital in my opinion because it enables me to alert my mother. It's regularly saves my life, most recently last night when my chest filled with secretions and I quickly alerted my mother who suctioned me out. I hold an easy press button in my hand that connects to the device and a few clicks later I call alert my mother, move my adjustable bed and phone out. I use an environmental control by Possum which is operating in the UK.

Straw clips are extremely helpful for keeping drinking straws in place especially while using a nasal ventilator. A huge thank you goes out to the late Carl Tilson for this tip which he gave just before his death. Please look on Amazon for these.

Alternative to, is a fantastic website for finding cheap or free alternatives to mainstream software. Things like Photoshop, painting software and many other useful things.

I really like f.lux software which I found recently as it takes pressure off my eyes. After sunset it turns my screen orange taking away the glare of the normal blue light waves. It's helpful because I'm on my computer all day as are many with Duchenne's.

Keyboard shortcuts are very useful especially while surfing the internet, for instance CTRL L, highlights the URL which allows easy copying. CTRL K highlights the search box especially in firefox. CTRL F opens the find word box which helps you locate text on webpages.

Light weight computer mice also really help me to use the computer and I have briefly used voice recognition software to also help with writing.

So there you are, that's a list of my favourite helpful software, devices and practical solutions. Feel free to add your own to the comments section below.

More on a range of subjects can be found out in my book;

Wednesday, 27 January 2016

When normal isn't normal

Lately I've been feeling strange especially when off my ventilator. I've had headaches, breathing difficulties and my heart rate has felt fast, registering 88 on my personal pulse oximeter the other day. I've felt rotten but after all the tests everything appears normal, ECHO scan normal, ECG normal, lung function normal and blood gasses normal. So what gives? Am I a psychosomatic malingerer, imagining these health issues with my brain causing observable symptoms? I hate the disconnect between how I feel and how tests say I am. I feel bizarrely like a fraud because have I been imagining it? I don't think so but I can't even be sure I can trust my own mind any more. I'm having more tests done and that has included a blood test. Only time will tell on that one.

This may sound strange but living with a life threatening disease makes me prepare for death every time I feel unwell. Have I done enough Spiritually? Have I sent the right messages to my friends? Have I done right by my family? Will dying hurt and how will my family cope after I'm gone? With Duchenne's you're constantly looking down the barrel, with a stalker following you everywhere. I'm tired of this merry-go-round of preparation and anticlimax as I keep living with this uncertainty. Life is precious don't misunderstand me, but prison weighs heavily on me. I long for true freedom from this bodily prison, I've done as much time as a bank robber yet I have not committed any crime. Don't get me wrong I am sinner who is often wrong just not in the instance of being born with DMD.

The expectation of positivity weighs incredibly heavily on many with these sorts of illnesses including myself. Anything other than guts and determination can often be met with criticism and a pull yourself together attitude. I have enormous hope for an awesome future after death, that keeps me going and how my parents brought me up also gives me positivity. But, I'm human and have the ability to experience negative feelings and sharing them isn't wrong. It doesn't make one a miserable give up merchant. We/I need to let them out, let tears flow and release all the tension that builds up within.

More on a range of subjects can be found out in my book;

Thursday, 7 January 2016

Trade Offs

In every life there are trade offs that people have to make whether it's stopping that extra night out because of money troubles, or whether to do your hair in a certain style with time running out. In a life with DMD there are also trade offs but especially in the older years they can be quite serious.

Personally I often have to make almost daily trade offs especially when my chest is misbehaving. For instance if my chest is really bad then every transfer using a hoist could make me cough so sometimes I must choose whether to use the bathroom or clear my chest. I have to trade off the minimum time I need suctioning but clearing my chest with how desperate I need to use the facilities. Hardly glamorous I know but such is my life. If I get this wrong I could end up chesty in the hoist which I wanted to avoid in the first place or an embarrassing accident could occur. It's depressing when I get chesty near the end of nearly every month awaiting a tracheotomy change. When I hit the hay during these times I dread facing the next day and I'm counting down the days until the tracheotomy tube is changed.

Another literal balancing act is when I'm eating my meals I need my head forward to ease swallowing and if I over compensate my head will fall. If that happens I could potentially spill my drink so I need my mother to push it back up and the whole process continues on. It's very frustrating but I try staying positive to keep my sanity because it's really not worth it when there's plenty of other things needing attention. This life with DMD does give a unique perspective to all affected. My mother has to trade off my care needs with her needs of having a break. Yesterday three of my teeth were extracted and because my aftercare was uncertain she cancelled her night out as they can't administer painkillers. I have amazing parents willing to go the extra mile.

It certainly makes one think.

More can be found out in my book;

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

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.

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

Welcome to my blog!