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11:19pm November 16, 2011

➸ rob kelly: MOM, TRIGEMINAL NEURALGIA - 11/3/11

robkellywriteswords:

I can’t eat or talk without pain! Yet I still try to do both. One is for survival but really both are for survival. I am a social creature and didn’t realize how much until you told me I wouldn’t be able to talk.

So I am practicing silence. It is interesting how others respond to my silence.

First off, hi. I have trigeminal neuralgia too, and am unable to use speech for communication for unrelated reasons.  Just so you know why I’ve randomly contacted you about this. 

Seriously, seriously, seriously consider finding an alternate mode of communication. While most “official” communication devices cost upwards of $1000, there are apps for iPhone/iPod Touch/iPad that are far cheaper.  (An iPod Touch is expensive by my standards, at $200 for the new ones, but way cheaper than most dedicated speech generating devices.) There are also programs for various kinds of laptops. 

I use an iPod Touch for most of my daily communication. I have five different apps of widely varying price and functionality (I think at least one requires a net connection, for instance).  There’s more than the ones I have too. Any of mine will run on iPod Touch, iPhone, or iPad – I just can’t afford an iPhone or an iPad. 

So here’s a list of the ones I have (prices in US dollars):

  • Proloquo2Go ($189.99)
  • AssistiveChat ($24.99)
  • SpeakIt ($1.99)
  • Text2Speech ($0.99)
  • NeoKate (free)

Definitely check into them before you buy any of the expensive ones, to be sure it has what you want. 

All of mine allow a person to type in words. There are programs that are all preset phrases, but I don’t generally use them as they are more limiting and geared toward beginning communicators.

Some of mine also have presets with commonly used words, phrases, and sentences.  These may be represented by pictures and/or words depending on the app. 

Two of mine have word prediction features to make typing faster for slow typists.

 

Some of them support both portrait and landscape mode, some don’t.

 

They have a range of different voices. Text2Speech has horrid ones that I would not use unless I had no other choice. (I think Text2Speech is the one you have to be online for too, but don’t quote me on that.)

Also you may want to get little speakers for places with loud background noise. There’s a huge range of options I’m not even close to well versed on. 

There’s apps for Android too but I don’t have one so I know nothing. 

Anyway, none of this will let you talk while driving (at least… I know a non-speaking guy who tries to type while he drives – I refuse to ride in a car with him after he drove us straight into a bright orange barrel).  But it is a very convenient (and portable – unless you use a wheelchair, devices the size of normal keyboards are a pain in the ass to carry and use) way to communicate the rest of the time. And people who use these devices find that our quality of life has gone up considerably.  And that’s true whether the reason for not speaking is unclear speech, cognitive issues, sensory issues, pain, or motor issues – and whether we can speak some of the time or none of the time. 

If you do choose to use a device to speak with, you may want to join a mailing list called ACOLUG – Augmentative Communication Online Users Group.  They have a lot of good advice. 

And even if you don’t get a speech program, having some sort of small PDA-type thing whether it’s an iPod Touch or a Windows device or a smart phone, can come in handy to type into for people to read. 

Apparently some of the cheaper speech programs advertise themselves as good for people who just have a sore throat or laryngitis.  So I think having your face feel like lightning when you talk is a more than good enough reason.  But it’s your decision in the end, I just wanted to be sure you know this is an option – because a lot of people don’t even know things like this exist.  Or else don’t even think of themselves as the sort of person who could benefit from them.  I can’t emphasize enough the quality of life changes most people experience once finding an easier or less painful way to communicate.