Finding the Words

For MND Awareness Month this June, I am planning to write a blog post every day, exploring the different facets of life with motor neurone disease. Dip in and out, and please do share, as we shine a light on our lives to the world in the hope that more can be done to find a cure.

Week One will be looking at living with MND – how it impacts people differently, some of the symptoms, and how life can carry on. It comes not through my own direct experience, but through my mum’s, through talking to her and watching her over the past thirteen and a half months. However, you can read her perspective in her own blog.

I wanted to start Week One with the first symptom we noticed with Mum, and one of the most difficult – speech loss.

Mum has Progressive Bulbar Palsy, a type of motor neurone disease that usually affects speech and swallowing first. Four months before diagnosis, we noticed Mum’s speech was slightly slurred – barely noticeable really, and we didn’t pay it much attention. To be honest, we just assumed she’d had one too many Snowballs at Christmas.

Fast-forward two months, and her GP sends her to hospital, thinking she has had a stroke. I don’t know how this came as such a shock to us. Her speech was getting worse, but it just hadn’t registered. I had only spoken to her over the phone – I think I just assumed it was a bad signal and thought nothing more of it.

Two months later, we had the diagnosis. Mum’s speech was worse again, but when I was sat with her, I could understand her well. By her birthday in June, more people were struggling, especially my Grandad, who is deaf. My sister and I weren’t. Gradually, as the weeks went by, it took more and more concentration to be able to understand what she was trying to say.

It’s hard for Mum, not being able to communicate as easily as we all take for granted. I can’t even comprehend how frustrating it must be, watching the conversation move on, not being able to type quickly enough, not being able to express the words you can hear in your head.

We try our best to accommodate in every way we can. We slow down conversations, and try not to look at her phone while she’s typing; we don’t want to anticipate what she wants to say before she says it. It doesn’t seem fair.

As for Mum, she always carries a notebook around, sometimes preferring to quickly scribble her thoughts, rather than say them out loud. She chose to do that when she met my fiancées parents, for example – it’s just quicker. She even dates the pages.

She also uses a variety of text to speech apps that are free to download. It allows her to change accents (although for some reason she has it stuck of American) and be heard.

We use Bluetooth speakers to amplify the sound coming from her phone, allowing her to be heard more clearly, especially in public. For Mother’s Day, my sister bought her a Me 2 You teddy bear that has a Bluetooth speaker inside – a silly frivolity that makes us all laugh, but is actually incredibly useful.

Mum still has a voice. It doesn’t sound like the one she had for the first forty odd years of her life, but it is still a voice and it is still hers. It may require a bit more patience, but speech loss won’t prevent her from being heard.

For anyone with MND reading this who is fearful of losing their ability to speak, I would advise you to bank your voice as soon as possible. I know it can seem like a daunting process, but it is relatively cheap and easy to do. Mum never had the option of preserving her voice in any way. Please contact the MND Association for more details.

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