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My best friend, and Sally's aunt Maureen was diagnosed with MND nearly two years ago. She had been struggling with speaking almost a year before she was finally diagnosed so actually it's been almost three years since we heard her voice and we miss it still. For a few months I used to ring her phone, although I knew she couldn't answer, so I could listen to her old voice mail message.

I thought it was particularly cruel of the disease to steal her voice first, as Maureen has always been a very sociable person, an entertainer and full of laughter and stories to tell.  In her career as a social worker she was a skilled communicator and she had helped many vulnerable children to speak out about their abuse and pain. She had also developed training and tools to help other professionals listen better to children and to ensure that children had a voice in plans for their futures.

It became increasingly difficult for Maureen not only to talk but also to eat or drink, so going to a  party or out for a meal or drink with friends I think became less and less enjoyable for her. She resigned from her job as an Independent Reviewing a Officer for looked after children with disabilities, as she felt she could no longer chair the meetings without a voice. I think most of the children thought they would rather have Maureen without a voice than anyone else, but she felt they deserved better. It's so sad that she cannot tell her three grandchildren her stories of being a pirate when she was younger,  or sing them silly songs. 

Maureen struggled with just pen and paper and non verbal communication for a few months but after being loaned an iPad with the Predictable Speech application, she couldn't wait to get her own. It's wonderful that the IPad speaks out loud , so that she can talk not just to one but to a group of people and also she doesn't have to wait to get someone's attention but can butt into the conversation ( and even swears) if she wants.  We need to get louder speakers for it though, as if there are a number of people in a room talking it does seem that her new 'mechanical' voice is easier to ignore than Maureen's old authoritative tones !  It's a shame that her voice had deteriorated so badly before she was diagnosed as Maureen's might have been able to record her own voice for use on Predictable.  However she was lucky that someone advised her early about it  and she could afford to buy an iPad, as Sally and I have heard that there is a long wait to borrow light scribes and many people remain unaware of these new aids for communication. 

However even with her iPad by her side, we are aware that Maureen's loss of 'normal' speech daily causes her frustration, discrimination and insensitive treatment from the general public and professionals . This is usually from people who lack awareness of MND, those who jump to assumptions about her lack of speech, or who are just plain stupid and don't think.  For example, the GP who phones her to discuss new medication, the shop assistant who shouts at her as if she's deaf or speaks slowly as if she's stupid, or the district nurse who talks about her as if she's not there.  

Sally and I feel that it's important to raise awareness of the impact on individuals of losing their voice through MND. We have planned for a week from 1st June 2015  to complete a Silent Challenge where we will not speak. Every day we will blog and tweet our experiences from our voiceless lives and ask for support and donations for MND South London group. Sally will be working some of the time during the week and I am retired so it will be interesting to compare our experiences and I suspect it will he harder for Sally.  We think this challenge will complement the 'Don't let me die without a voice' campaign, but will focus on more day to day living issues and the need for early access to communication tools. 

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