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