MY LIFE WITH DMD

Where to start? I will start with a common question, which is Where you born that way? My normal answer being yes just to stop them bothering me. But my answer honestly should be no but I was born with the condition. The condition being Duchenne Muscular Dystrophy which is a neuromuscular disorder that causes muscle wasting.

I was initially diagnosed at 5 years of age via a muscle biopsy test. The first signs of there being a problem was brought up by my first school-teacher who noticed that during PE i was struggling to keep up with the other kids. From 5 onwards it became harder and harder for me to walk; with my ability to walk completely going at 11, this happening over a weekend where i simply could not get up, and i have been wheelchair bound ever since. To be honest i was glad when this happened.

When i started secondary school i got my first electric wheelchair which was of great benefit to me giving me the freedom and independence i needed. Although I stopped walking aged 11 I did continue to stand for a few years to come with the use of various different contraptions and through almost daily physiotherapy to keep my legs to take my weight. With the condition the limbs and joints especially the legs stiffen and wont straighten. This is why physiotherapy is needed to help prevent this, I also had two operations to lengthen tendons in my feet and knees to allow my legs to straighten. At the age of 15 the amount of pain i was in standing and the very limited time i could stand for i was forced to stop.

Another common problem caused by the condition is scoliosis or curving of the spine. This problem occurred for me around the time I was 16, the first way tried to help with this was to wear a brace, a corset-like appliance that fitted from armpits to hips and was used to prevent the progression of the curving. This for me did not work, so at 19 Surgery was recommended by doctors who thought my curve had a high likelihood of progression and that it would begin to interfere with my sitting and possibly affect functions such as my breathing. This surgery involved an incision on the back and involved the use of metal rods to correct the curve. The surgery was a total success, but did leave me the affect of not being able to lift my arms, so things such as not being able to feed myself occured.

The next major change in my condition was at 22 when i started using a non-invasive ventilator delivered through a face mask, i first used the ventilator during sleeping hours in order to give my lungs support and allow them to rest through the night. After a few years i started to use the ventilator during the day for more assistance and gradually i have increased the amount of time using the ventilator during the day as needed. At this moment in time i am off the ventilator for seven hours a day on average, this means if going out in the evening means taking the ventilator and using it with an external battery.

I was always aware that because of DMD that I was at high risk of colds and flu turning into chest infections which is why I have a flu jab every year. Although I knew this it was only when I was 26 that a cold became a bad chest infection, I in fact ended up with pneumonia and collapsed lung. The scary thing how quick it took hold and soon I could not breathe without my ventilator. I then spent nearly three weeks in hospital on oxygen through my ventilator, on strong antibiotics and using a cough assist machine to clear my chest. Since then touch wood no colds and flu's have got that bad because of a cough assist machine at home and by having antibiotics almost immediately to hand.

At the moment it is simple things that are getting harder to do, such as driving my wheelchair especially when my hands are cold, using my laptop, using the TV remote, my kindle and ps3. I also get tired very easily especially after days out which take a few days to recover from. I know that I am going to need to use my ventilator more and more eventually all-day I think.

So that's my life with DMD, I know that DMD will beat me one day but while I can I'm going live my life to fullest.