My mum was a very chatty person. Loved a gossip and natter with my nana and all the family. She also liked a sing song after a few vodkas!! One of the saddest things that happened after being diagnosed is that she lost that voice. That freedom of speech. Its a condition that comes with the type of MND she had. The voice muscles were the first to go in mums case, and they went quickly. First her voice was slightly slurred but still quite easy to understand, she sounded like me on a Saturday night out!! But as it worsened it got harder to hold a conversation with her. Within months it had gone to a point where you couldnt make any words out and you couldnt hear mum, just a slurred noise. She started to write everything down on a notepad and although this was a practical way of communicating I missed her voice. I missed her laugh. I missed her shouting at my dad or sighing at us. And you know what is even sadder? I cant recall what she sounded like? I try to recall her telling me off or shouting for me as a child. I try to recall her singing or laughing at something. I try and try as bes ast I can and I cant recall her voice and it torments me. We had a home movie with her singing to one of the grand kids and we watched it over and over again! It was like a precious gift that we stumbled upon after her passing. Now, imagine just for a minute that you had no voice? How would you communicate? How would you say I need to pee or I am too hot? I need a drink or I dont like this food? I am in pain or I need help? These are basic needs and you cant convey them as quickly as you would like to. Imagine not being able to tell your children or your family that you love them? That you are proud of them or that they are getting on your nerves! These are everyday emotions and you cant convey them. Imagine not being able to sing a song or hum along to your favourite adverts. Imagine not being able to talk about your fears especially when you are well aware that you are dying and you need to sort all your affairs out? How would you do this without a voice? It would be very hard, frustrating and spirit breaking. Many people also assume if you have no voice then you have lost your mind. I know this from experience and some of the people who expressed these views were professionals. However, my mum was one of the lucky ones, so to speak, in the postcode lottery. My mum was giving a little machine called a litewriter. It was a text/speak device that would say what she had written. It wasnt mums voice or accent but it was a fantastic useful advice that gave her, for a while, a voice of some description. But these devices are not always available as they are in short supply and you may have to wait weeks for one depending on your area. Most of these devices come from voluntary organisations such as MND Scotland or the MNDA but again they have limited numbers and it can take weeks of waiting. Thats weeks without your voice. Weeks with limited conversation. And all when time is of the essence due to the death sentence that is MND. I recently met a sufferer who had an excellent app on an iPAD. He had been giving this from funds raised at an event in Trafford and it is how he spoke to my dad and I all night. It is an absolute lifeline to people who have lost their voice and its rarely available on the NHS. So the money you donate to my climb will help provide essentials like these text/speak devices to people who need them at their most vulnerable state and usually at the point that they can no longer ask for one for themselves. Please donate kindly and make a huge difference to a whole family by helping them simply communicate! And the next time you hear your mum or loved one talking nonsense or telling you off, listen carefully and cherish every word. For mum x
Posted on: Tue, 16 Sep 2014 21:36:35 +0000
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