Sian

My name is Sian Jackson. I have dysphonia, esophageal dysmotility and cerebral palsy. I was diagnosed with esophageal dysmotility, as well as dysphonia in 2009/2010, but have had it for at least twenty five years. It's hard having dysmotility because you can sound OK and then it can be triggered for no reason.

The speech therapist and ourselves have tried everything to help my voice but it became a big problem. Two years after I moved in with my partner, we were at a meeting, and for no reason my voice went and didn't come back for several days. Because my partner is blind I had no way of telling him what I needed.

We bought a talking child’s spell checker which couldn't say the words I had typed, it just went ‘Bing’ all the time and this just frustrated me even more. We tried a Lightwriter SL35, as well as other communication aids.

I then tried the Lightwriter SL40, which I could work perfectly. Mick Steele demonstrated the SL40 Connect which had a phone. It’s the bigger sister to the SL40 which only has texting, alarm, notes, and of course voice.

Because the NHS pulled out of paying for my communication aid, the speech therapy department needed to look around for a charity who would hopefully buy my communication aid and the mount systems for both over the bed and my wheelchair.  Thankfully, The Sequal Trust stepped in, and agreed to pay for all of my communication equipment that I needed. But my story doesn’t end there. There was then a three to six month wait, while the money was raised. That’s the reason why it took so long to get my communication aid. 

My SL40 Connect has an updated version of the software, and was born in January 2011. I have had my device since 17th March. I have called her Lucy. I phone and text my friends, who thought I'd disappeared. My best friend is profoundly deaf and we haven't been able to talk on the phone since my voice went, it is great to be able to do all those things I once could do.

No one knows what it’s like to have this problem until you have been there. Now I can go out and ask for help without being afraid of not being able to communicate. I love using a memory stick as I can work on my notes for the next day or phone calls and save them to it for using on my computer.

The Notes program helps me remember things and I really missed this program when I temporarily went back to using the SL35. 

The predictive text is so much better and helps me, as I can choose the word I need or pick the sentence.

The other day we programmed the TV remote into Lucy, and I found it quite amusing that I could turn the TV off, and my partner didn't realise that I’d done it and thought that the TV had broken! (It was more amusing, as he was listening to the programme and I thought he was asleep so I turned off the TV and didn't realise. Now he listens for the beep if I forget to tell him, and says ‘turn it back on’)

I'd like to thank Toby Churchill, the Stafford Speech Therapy Department, as well as our friends who help us. Big thanks to Mick Steele, for his ongoing support, and to Toby Churchill who invented the best communication aid. Not forgetting Claire and Kathryn from the local Speech and Language Department, without them I would never have got Lucy, and got my life back.

Now I have my life back and enjoy time with my friends and family again, and don’t feel left out. I enjoy going out, and doing my crafts. I am still learning how to use Lucy, but I now feel I can join in. I just talk with Lucy now and people listen to me. My confidence is so much better, and I’m even cracking jokes which I never used to.

This was written on Lucy, my Lightwriter SL40 Connect.

Visit my personal websites here. 

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