About my disability

General information
I have congenital muscular dystrophy, which is a severe progressive muscle-wasting disease. As the 'congenital' bit suggests, I was born with my disability, which affects all the muscles in my body, including the respiratory muscles.  My muscle weakness has also caused me to develop a severe scoliosis, which restricts my lung function. My scoliosis is inoperable as it is a long complex operation due to its severity, and the risks involved to someone with a neuromuscular condition such as myself outweigh the benefits.

How it affects me
My condition affects my ability to do all day to day tasks, including getting washed and dressed, preparing meals, cutting up food and so on. I still have some hand function, so am able to write for short periods of time, use my iPhone and iPad, type on my computer (although only using a specific light-touch keyboard) and drive my powered wheelchair using a joystick. I struggle with small buttons on things such as mobile phones and now cannot play any video games as I've lost the strength in my wrists to hold them up. I can still sit unsupported for short periods of time and am able to feed myself with light cutlery and drink from plastic cups. I also get some pain from my back and shoulders, which I treat with codeine 30mg and paracetamol 1g at night and paracetamol and ibuprofen if I need it during the day. I also use heat packs at night and if needed during the day as they sometimes help with general aches and pains.

My care, equipment and treatment plan
At university I have 24 hour care from 2 CSV volunteers and one privately paid carer. They help me with all aspects of my care, including academic assistance and are funded by my home PCT, home social services and Disabled Students' Allowance from my home LEA. At home I receive my personal care either privately or through a local care agency and my dad helps with day to day things like meals. This is funded by my home PCT and social services.

If you have any questions about my disability, care plan or treatment, please let me know.
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