January 25th 2016
Introductions
Hi, my name’s Liz Ogg. I’ve just turned 67 and two and a half years ago, after a number of months of tests, I was diagnosed with MND. It’s the bulbar form of the condition, so the first thing that I began to notice about three years ago was difficulties with my speech. Other symptoms have appeared since, of course.
I’m not quite sure why I want to post this Ogg-blog on the website. Despite the bad times, (and there are some) my husband and I try to remain positive and make the very best of what we have. It’s not always easy, but it’s the only way.
We try to follow two main philosophies each and every day:
No 1: Find a bit of happiness and humour in the changes and adaptations that we have to make.
No 2: Try not to just see the problem, but to actively search out a solution.
We’ve had tremendous help and support from both the NHS and MND Scotland staff, for which we are very grateful. But MND is such an individual disease that sometimes, we have had to find our own personal solutions.
What I would like to do is perhaps to help others by focusing on some of the main problems that I have faced and saying what we have tried to do to make things better. Some of it won’t apply to you, but hopefully, there will be some useful ideas. I’m going to start with perhaps the major problem for me – the inability to speak. I hope to cover some other topics in the weeks to come.
Speech difficulties
This has been an ongoing problem for me for about three years and was one of the first signs of the disease. I lost the power of speech finally about 2years ago. As a former English teacher with a strong strain of classroom sarcasm and a dry sense of humour, this has been a particular problem area for me.
It might sound like stating the obvious, but you don't realise how much of your personality is conveyed through your voice. And when you lose that power, it can be very isolating .And with the loss of speech has gone the ability to move facial muscles in any subtle way. So my range of expresions is very limited. You can become an onlooker instead of a participant, but I knew I had to find a way round this. Communication is obviously much more difficult now and speed of response – particularly when having a “debate” with my husband - is tricky! I still want to have the last word, of course…
Everyday communication
It sounds very simple, but for everyday management of things in the house, we have devised a small set of hand gestures. Starting with the simple thumbs up / thumbs down for Yes / No. We’ve had to work at it, but we now have a range of signs for regular domestic routines, which work pretty well. It helps if you're good at Charades! Sadly husband's not!
I also have notebooks and pens left at several points around the house and in my bag, to allow me to have my say. But what has really set me free is the use of my smart phone / pad to speak through Voice apps. There are apps which you can buy, but I’ve found the best for voice quality is Type and Speak and it’s free to download. I use it on my android phone . I chose to use a voice app called Ivona text to speech. There's a selection of voices to choose from depending on where you come from and they're free to download. I’ve become quicker at typing in what I want to say and joining in any conversation. My friends have got used to me waving my phone in the air! This app also works on an android tablet.
Although it’s incredibly frustrating not being able to interact flexibly with my grandchildren, I’m
amazed at how well they have adapted – even the 3-year old – to gran speaking to them through her phone. And the ipad holds a certain forbidden fascination when their parents aren't looking.
Conversations
If I want to write more than a chat type comment I use a different app on an I pad. I sometimes prepare what I want to say in advance. For example, when I’m seeing friends for a get-together, I will prepare a “script” of what I’ve been up to or a set of questions to ask others. It’s given me confidence and friends have got used to me having a say in this way. You can then edit / change your script for the next event.
I can also prepare in this way for a medical appointment, to give the doctor / nurse as much info as possible, as efficiently as possible. I've found the best app for this is one called Pages from the Apple App Store. You use this like a normal document , but then choose how you want to upload it. You can email it, have it read out or share it. To have it read, which I mostly do, I use it with another app called Voice Dream also from the App Store. There are a number of voices to choose from here. If you need more info, I'll be delighted to help. It's very flexible and let's you store or change information as you need it.
I have an android phone and an I-pad. My husband says that suits my contrary nature!
I like to have a foot in both camps!!!!
Voicebank Project
About a year ago, most of our family and a large number of friends recorded our voices as part of the Voicebank Project in the Euan MacDonald Centre, Edinburgh University. The aim is to record as many regional voices as possible around the country and then produce a “voice” for people who have lost their speech, which is as near as possible to their regional voice. I hope to have my own voice app soon with a West of Scotland accent.
In the weeks to come, I hope to include some of the following topics:
Eating / Drinking / Saliva / Sleeping / Activity / Positive thinking.
In the meantime, feel free to get back with your own ideas on the above topic.
Thanks for reading this and keep well.
Liz
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