Once upon a time I was just like my family and friends. Then things started to change.
You speak and the sound is different and you’re left wondering why. It’s difficult to form words. You were always a chatterbox, laughing and joking, ten to the dozen. Now you sound tired or drunk. Speech Therapist says to tell people ‘I have a speech problem’. People behave strangely.
When you’re with friends you can’t join in with the conversation because by the time you’ve formed the words they have moved onto another topic. It’s difficult to be heard in a crowded room because your voice is much softer than before.
In time, people looked puzzled when you speak, and you have to speak slowly and repeat yourself over and over. Your hands don’t work either, so writing is not an option. You slowly disappear, turn into someone different, an unfamiliar shadow of your former self. Depression envelops you like a black cloud and you can’t function. Two babies to care for but you can’t even care for yourself. All the time wishing that the horrible disease will go away and leave you alone. Desperate to be you again.
Eventually, no one can understand you. People think that you can’t understand them and speak loudly or ignore you. Frustration, anger, sadness.
You don’t think about assistive technology because you’ve never been disabled; don’t know anyone who is disabled. Health people come in, can’t help or give you equipment that you can’t use. Finally, MND Association Visitor brings you someone who knows everything about assistive technology. You see a way back to that old you. Communication, reading, writing, internet use again. How do you get the money for very expensive assistive technology?
Speech therapist says ‘no budget’; Occupational therapist says ‘no budget’. Now divorced, single mum doesn’t have budget. You have to ask charities for money which is alien to you.
MND Association help. They help many times, as technology becomes outdated or you can’t physically use it anymore.
In 2013, your CCG has most of the money for portable eyegaze. Suddenly, you have a voice everywhere, people can’t wait to talk to you and see your magic computer. You give talks to health professionals, you can almost keep up with conversations and you have a very loud voice. You discover that you can paint with your eyes. Art was always your great passion. You visit children with special needs at school and attend art therapy at hospice. You’re still severely disabled but part of you is back and it feels so good.
Technology is there. Everyone can have a voice.