making muscle wasting history

Lately I’ve been reflecting on life living with Duchenne. Living with an illness such as Duchenne people may think the most terrible part is the shortened life expectancy. I would tend to disagree as the worst things that happen are the things we experience along the way, that being the muscle deterioration losing our everyday bodily functions and not having the best opportunities to find love.

Independence plays a key part in everyday aspects, being dependent on a wheelchair not so much! In addition especially when being wheelchair bound comes with loss of muscle strength which has an even more horrific affect on the individual with the condition.

We are not self-reliant physically and we live life dependent on others however having somebody to help you with physical keeps us content to a certain extent but sometimes we feel frustration because we desire full Independence.

Having opportunities to find love – obviously we love our family which is a different kind of love, however I’m referring to relationships, finding that special person to share your life with to create even more unique memoirs. We don’t seem to have that unique opportunity because living with Duchenne sometimes creates a barrier for making new friends or meeting a special someone, communicating can become difficult being so low down sitting in a wheelchair especially in a crowded area for example a club or even a local pub.

Sometimes I feel excluded when I hear of other individuals making arrangements for a night out and when I see photographs of people carousing with each other I experience a feeling of profound sadness which feels like because of the condition it prohibits me from that environment.

We all desire the things money can’t buy like love and happiness but living with Duchenne has taught us how to be in touch with ourselves and not take such for granted, even through adversity we find happiness and love but above all we wish our bodily functions were fixed.