18 May 2014

"Your Call Will Beyonce As Soon As Possible"

Communication can be a hit-and-miss affair when you have ME. Between variable cognitive impairment and muscle problems (all the way from slightly weak, or a bit of twitching, to temporary paralysis), things can get a little tricky! Even if you can work out what you want to say and have the physical ability to speak, sometimes there just seems to be a huge block between the brain and the mouth, and the words you desperately want to say just won't come out.

And sometimes, as far as you're concerned, it's all worked fine - but then the blank/confused look in the other person's eye tells you something got lost in translation. I was once part of a hilarious online conversation where we were all recounting funny stories of ridiculous things we've said or done because of ME cognitive problems. One person's story went something along the lines of,
"My daughter picked up a hot cup of tea and it was hurting her hand. I yelled, 'Put it down on the table, put it down on the table!" but couldn't understand why she was just staring oddly at me and still holding the hot cup. It turned out that, although I was convinced I'd said, "Put it down on the table", what I'd actually been shouting was, "Pick up the phone! Pick up the phone!" 
(Apologies to whoever it was who told that story; I had no idea how to re-find that conversation to find out who you are, and I hope you don't mind me mentioning it - but know that it has tickled me ever since :-) )


So yes, communication issues with ME can result in ridiculous and hilarious conversations. I regularly have to mime at my carers when I just can't find the words I need; they've become quite good at interpreting me and we often end up in fits of laughter because of my brain's ludicrousness!

However, it's not always so easy to laugh at yourself or the situations you find yourself in. Days when you're in excruciating pain, your muscles are very weak and sometimes paralysed, and your brain is refusing to tell you your own name let alone what that thing is called that you're desperate for (water? food? blanket? painkillers? toilet?) - those times aren't so funny.

I now have written instructions for my carers that, in the event that I cannot speak, they should ask me yes/no questions and tell me to give one grunt for 'no' and two grunts for 'yes'. But that requires me to endure multiple questions until they can work out where my pain is or whether I'm hot/cold/hungry/thirsty/uncomfortable etc - and when every tiny noise feels like a battering ram causing pain and shock to my entire body, more questions is not what I need. Plus it's humiliating to be like that, and it makes you feel very vulnerable and powerless. And how many yes/no questions would it take for them to work out that what I'm trying to say is that my left ear is bent back where I'm lying on the pillow and it's unbearable agony but I can't lift my head to sort it out?!

So, I decided to try to find ways to help myself communicate on bad days. And I found a few really helpful tools. They all have limitations and there are days when I would not be able to use any of them; most of them require me to be able to see, so would be no good on days when I cannot open my eyes, or when I have to wear an eye mask because any light causes searing eye pain. And they all require at least a bit of cognitive ability, so are unusable on days when the only thing between my ears is porridge. On other days, however, one or other of them may be helpful, and may be the difference between me being trapped mute inside a body racked with pain, or being able to communicate my basic needs. So I thought I'd share in case they help others.

I started by doing a Google search. (Other search engines are available! And using this one: http://investinme.easysearch.org.uk will raise a bit of money for Invest in ME at no cost to you.) I found that there are quite a few different communication tools out there, many of which were developed for people with autism or who have had a stroke. Both types can be helpful, although many of the ones developed for people with autism are for children, so have a lot in them that isn't relevant to me, and don't include stuff that would be relevant.

Smartphone apps
I found some speech apps for smartphones, many of which are free, where you can type in what you want to say and it'll read it out for you (or you can just show the other person what you've typed). I have an android phone so only know about apps for android, but I'd be highly surprised if there weren't ones for other platforms.

This is the app that I use: Speech Assistant AAC although there are plenty of others that I haven't tested, which may or may not be better/more suitable to you. I've found this one really helpful (in fact I cried with relief when I found it!) and easy to use. It has lots of different words and phrases pre-set in different categories; you can edit and add to these, and you can also free type. (Using the app to swear out loud is strangely cathartic and very, very funny! I don't normally swear but on bad days it seems the only logical response!)

There are similar apps which use pictures instead of words, and with some of them you can take photos of people and objects that you want to be able to refer to using the app. I did download one of these apps in case there are days when pictures are easier for my addled brain to process than words, but I haven't worked out how to use it yet! (That is a reflection on me, not on how easy to use the app may or may not be!)

Communication boards
A communication board is a printed sheet with various words and/or pictures that you can point to. A brilliant site I found is this: Amy Speech & Language Therapy, Inc, where you can download various free communication boards. Here is one example: Bedside Messages (pdf file). I haven't yet used a communication board, but I plan to, I just haven't got my act together and worked out what I want on it yet. I'm excited about it, though, if for no other reason than that I will laminate it, and I do love a bit of lamination...!

I also found this site which has a free trial of software you can download to make your own communication boards: www.mayer-johnson.com - but I haven't tried it so don't know what it's like.

Question flowchart
Again, something that I've planned to do but haven't got round to yet, is to create a flowchart of yes/no questions, ie, 'Are you ok?' If no, 'Are you in pain?' If yes, 'Do you want pain meds?' - and so on. This allows me to choose in advance what I want people to ask me if I can't speak, so that what they ask is based on my priorities and preferences, not on what happens to occur to them at the time. It will be more exhausting for me, having to listen and respond to so many questions, but would be very useful on days when I can't open my eyes or can't move my hand to use my phone or point to boxes on a communication board. I guess I've sort of started this because, in my list of instructions to my carers, I have a list of common issues that I want them to ask me about, eg pain, hunger, thirst, hot/cold, uncomfortable, etc.

And finally...
Google have a talk/type thing which was pre-installed on my phone as 'Voice Search'. Basically, you can talk into your phone and it will type out what you're saying (in theory). So on days when I can talk but can't use my hands, if I want to send a message to someone or write myself a reminder or something, I could talk into the phone and it would type out what I'm saying. In theory. Or maybe, as my memory is appalling but I struggle with writing for very long, I could use it to take notes if someone visits me. In theory.

No doubt the technology will improve over time, but it's not quite there yet! For example, I spoke this:
"OK bear with me, I'm trying an experiment. Google have an app which allows you to talk into your phone and it will type out what you said"
And the app typed out this:
"ok with me driving experience google app allows you to talk into your phone and it will type out what you said"
Hmmm. Not *exactly* what I said...!

Once, when I'd only recently discovered that my phone could do this, I decided to test it out. I was on my landline but stuck on hold to some organisation or other, waiting for someone to answer the phone. So I opened the 'Voice Search' thing on my phone, and held it up to the phone to see what it would make of the recorded message. The result?
"Your call will Beyonce as soon as possible." 


This is by no means an exhaustive list, just things I have happened to come across up to now; please comment and share any communications aids that you've found helpful :-)


I'd love to hear what you think! Do leave a comment if you have anything you'd like to say about this topic. If you have any difficulty with this process, please see the Site Help page. Please bear with me if it takes a while for me to respond; I really appreciate you taking the time to read and comment on my blog, but I'm not always well enough to reply. Thank you :-)


Brooke said...

Great post! I, too love the Speech Assistant AAC app on Android. It's a real lifesaver! I have a custom category in that app specifically containing answers to common carer questions, and other words I use with carers, and another containing frequently used words/phrases with my husband. I adore the customization capabilities of that particular app.

I will definitely check out the flow boards you mentioned. Ironically enough, my mom is a professor (and active clinician) in Speech and Language Pathology. She tried to talk me into getting a professional AAC device (Dynavox is her favorite company), but I declined for now. One useful thing she told me is that most states (in the US) have programs that will pay most or all of the cost of a Dynavox device if a Speech Language Pathologist recommends one. And there are endless adaptations for Dynavox devices to allow just about anyone with any physical limitation to use one (you can even use just your eye movement, or the press of a button attached to any working part of your body, etc). So that's something people with severe communication issues may want to consider.

Personally, I came up with another method using my tablet that may help others. It would also work with pen and paper. For me, some days I can use it, other days I can't. I made a video about it awhile back (on one of my "really good" days), and thought I'd share the link in case it helps anyone else. It may just be something that helps me, but you never know, right? Here's the link: http://youtu.be/tVa0F4N7lDI

Again, thank you for taking the time and energy to write about this super important topic. Hopefully more people will see it, benefit from it, and share what works for them! Take care!

Rachel said...

Hi Brooke! Thank you so much for your comment :-) I'm sorry for the delay in replying; I've been a little zonked!

I'm not sure I'd realised you could create extra categories in Speech Assistant - I certainly hadn't done it before. Great tip, thank you! I love the idea of having different categories for different people!

I also recently realised that you can customise the colour of different parts of the display. I've changed everything to darker/more muted colours which is MUCH easier on my eyes than glaring white!

Handy to have a S&L mom when you have speech issues!!

I learnt about Dynavox type devices in my previous job; that's why I was so excited about the free smartphone speech apps, as the Dynavox is way out of my league price wise, and I doubt I'd get one 'prescribed' as I don't need it all the time. But you're absolutely right to mention it as people with more constant limited communication may well want to consider it. (By the way, do you know how they work just with eye movement? I know they *can* work like that, but I just don't know *how* and I'm intrigued!)

Great video! I'm guessing it took a lot of planning, energy and concentration to put that together, so well done and thank you! A question about the handwriting thingy on your tablet: do you have to press hard? I guess what I'm saying is, is it easier than writing with normal pen and paper? I find writing usually painful and often impossible, and even on good days I can't manage writing for more than a few lines before my hand gives up! But if I could do it electronically it might be easier. Hmmm, thought provoking!

I guess I do a similar thing to you, of jotting down words when I can think of them and then re-ordering/making sense of them as and when I can, but using a notes app on my phone (it's not in my handwriting, just in normal type). The app I use is called GNotes (https://play.google.com/store/apps/details?id=org.dayup.gnotes, although I'm sure there are others out there which may or may not be better). I would honestly be lost without it. It has become my brain. I create all different notes in it, which can be categorised however I want, and they are automatically synced with my Gmail account which is great if I want to be able to access on my computer something that I've written on my phone. I have tickable medication lists, reminder lists, draft messages, draft internet and blog posts, thoughts about stuff, lists for my carers (that I just add tasks to when I think of them), lists of birthdays of friends and family by month.... all sorts of stuff! I write notes as and when I think of things, so if something comes to mind in the middle of the night I just make a note on my phone so I don't forget it. Each note can have a separate reminder alarm set if I want.

However, if someone else is in the room and is talking to me, and I want to make a note of something they've said or something I've thought of, writing by hand is somehow easier to process cognitively than typing into a phone; I guess there's the extra step of trying to remember where different letters are on the phone keyboard. The problem is, if I write on paper I inevitably forget where I put the piece of paper, or even that I need to look at it. So maybe I should investigate a handwriting app on my phone for those situations.

(What on earth did people do before such amazing technology was available?! I know people moan about technology taking over our lives, but honestly, I'd be lost without it.)

Oh I do love sharing ideas like this! Thank you SO much for your contributions :-) xx