The hardest thing so far has been losing my speech. Looking back I seemed to have gone through the grieving process, spending quite a lot of time in denial, but now I’ve got my head round it and it seems simpler. Julia says I’m stubborn – I take that as a compliment. I can now speak fluent Teletubby which impresses my grandson Dexter. But sadly Dexter won’t be learning English from me just now.
What can you do when your speech starts to go:
Point to the first letter of every word; this gives some clue and breaks up the words to make it easier. And we have been advised to get different phrases written out for the bathroom and bedroom so I can just point to a phrase when I need something quickly.
Alphabet charts in action:
Voice Banking and tablet or phone:
Model Talker, the company I did my voice banking with, have created three different voices over the last few weeks to solve problems with clarity and pronunciation. How does it sound?
The Apps give you some phrases and you can add or edit any hard to predict phrases you need. Sounds complicated but it becomes simpler as you get used to it. The Speech and Language Therapist has loaned me a Microsoft based tablet with the grid pad app.
I also managed to get my voice on my Android phone; using a free app like “Speech Assistant” is easy, but a time may come when I can’t hit the right key on a very small phone keyboard and I have to use the tablet a bit more.
It is much slower typing things out but you have two options:
- Option one; type it roughly and get the other person to read it. Brilliant for noisy environments like the pub and you don’t have get each word 100% correct. A few typos aren’t the end of the world and you’ll find people finishing off your sentence, so less typing.
- The other option is making use of the synthesised voice, either pre-programmed phrases or typing. This option is not very forgiving of typos; you have to get it 100% right or gobbledegook comes out.
What I have learnt:
- Although I know what I’m saying the listener probably hasn’t a clue. Luckily Julia gives me clear feedback on that one!
- Hand movements – like Charades – works on the simple repetitive things but not on more complex. i.e. we have an understanding that doing a ‘C’ shape with my hand stands for “coffee”.
- Maybe I should have listened to Mr Tumble and learned sign language whilst watching Cbeebies with Dexter?
- We have used Facebook messenger quite a lot but Julia finds it frustrating when Jonny suddenly answers a question that I sent him on messenger out loud.
- Julia misses my voice – I never imagined that would be a side effect but now it seems obvious. I’m so grateful to Abi from church who mentioned it in the first few days of my diagnosis. I did voice banking a year ago when my voice was up to it. Julia now associates my electronic voice with me. If you have MND and your voice is pretty good get voice banking done ASAP, you won’t regret it.
- It gets you thinking what you are going to say/ask ahead of time. E.g. when I went down the pub with my good friend Dave I pre-programmed a set of questions and some phrases so it saved some time typing.
How am I doing?
I’m quite tired. Julia says I’ve regressed to full teenager; I sleep most mornings and I feel I’m not getting things done. I used to miss breakfast so now she wakes me up at 9am for a feed and medicines.
One theory is that I’m struggling to breathe at night and that’s what’s making me tired. So they have given me a BiPAP – Non Invasive Ventilation. It is a bit weird but I’m getting used to it slowly.
I’ve started to struggle with the blended food so now I do soups for lunch. Good news is that the chocolate puddings are still going down really well! And Audrey (my PEG tube) is getting more use – up to 4 times a day.