Hi there, yes, it’s been a while. Got a problem I bet someone here can help me figure out, I sure hope so.
A friend of my family had a stroke a few years back that paralyzed her on one side of her body. She’s also aphasic and can only speak a few words and phrases that are difficult to understand. That being said, she has no mental deficits, she’s as sharp as she ever was, she just can’t communicate very well.
It’s becoming more and more of an issue – until recently her husband was able to talk for her when interaction was needed. But he’s had some health issues that have put him in the hospital and he’s not able to communicate for her. It’s also become clear to us that she is very frustrated at not being able to make her thoughts known. We’ve had to admit her to the hospital as well and most of the staff treats her like she’s demented. It’s infuriating and disrespectful to her but that’s another posting for another day.
You would think there would be an app for this – there’s apps for every damn thing, isn’t there? I cannot find one that seems to be suitable. What I need for her is an app where she can type on a tablet (preferably Android, I have an Android tablet she could use) … something she could use to type in words and/or use maybe some icons/images of stuff that would assist her. It doesn’t have to “speak” – though I guess that would be nice, I dunno – but at least it needs to be something she could type into without too much difficulty.
Mostly what I’m finding is training apps for learning/finding words and that sort of thing … and nearly all fo them are for iPad. I would greatly appreciate finding something that could work for our friend. To be able to give her some semblance of conversation back would be a great thing for her and for her caregivers.
The first thing I thought of is assistive communication apps for people with autism like the ones listed here. I have no experience with them so I can’t vouch for their utility or adaptability but they may give you some terminology that would aid in looking for a better solution.
Is there something about a regular text editor that won’t function for her needs? If all she requires is the ability to type and then people can read what she’s written, my first thought is something on the order of notepad or a notes app but I’m assuming those have been tried and they’re lacking some critical component?
Yes, wonder about this. OP suggests that her friend has use of one side of her body. If she’s given a pen or pencil, can she write? You seem to be saying that maybe she could write or type, but the caregivers won’t even give her so much as a damn clipboard with a sheet of paper and a pencil?
Or is the aphasia deeper than that? Brains are not built in any logical modular order, and strokes that damage some part of the brain can cause all sorts of strange disabilities. Any combination of the abilities to speak, write, and understand spoken language might all be lost or diminished, independently of one another, and separately from any loss of motor function.
The ability to understand language is learned separately from the ability to product language. Do you know exactly what her disabilities are?
There are professionals who specialize in diagnosing and treating these kinds of conditions. There are any number of creative and not-so-creative ways to communicate with stroke-damaged people. Remember blinkie who wrote whole essays here just by blinking his eyes?
I think the best thing you can do, TubaDiva, is advocate for your friend, and see to it that she is getting this kind of professional therapy. Does she have anybody advocating for her this way? Maybe you need to become that advocate. If the nursing home is just warehousing her and letting her rot (as your OP seems to imply), raise a shit-storm over that.
Read all you can find about language disabilities in people with strokes, and learn the ways that can work, and the kinds of therapies that are available.
Oh, are there also HIPAA problems in the way? Do the doctors, nurses, and staff refuse to discuss anything with you because you aren’t family? Do they at least talk to the family? Can you get the family to include you in and authorize the home to talk to you? I think a lot of medical establishments are gladly using HIPAA to stonewall friends and family and lock them out of the loop so they don’t have to deal with them.
We have tried this app with our autistic adult daughter:
A bit pricey (but way cheaper than a Delta Talker) and iOS only. Handles both icon and text input, and will speak. Was a little complex for my daughter (as an adult there are no resources available for training - autistic children get all the funding and attention, adults are mostly forgotten). Also she had a tendency to lose her iDevice (or have it stolen)…
I don’t know if this will help or not, but lots of places (like Google, Amazon, etc.) have what they call “predictive search” where all you have to do is start typing in the search box and they will try to guess what word or phrase you might be looking for.
I bought a second generation used iPad for really cheap on eBay and it works great. That being said…
We are in a somewhat precarious position with this couple – we are as close to them as family but we are NOT family. (They’ve outlived most of their blood relations and the few that are still around are hundreds of miles away and in poor health themselves.) My mother was able to get them both admitted to the hospital – they were in such bad shape the hospital didn’t have much choice – and now we’re dealing with what happens next, which is at least in the short term after the hospital care some kind of assisted care situation, rehab/nursing home. It’s unbearable to see someone who is totally compos mentis treated like they’re crazed simply because she doesn’t have a lot of words. I can do so little for them at this place but maybe I can do something about this.
As always, Dopers come through and I am so grateful for all of you.
Now let’s hope she recovers sufficient that she might like to do this and I can work with her on finding something she will be comfortable with and would use. I pray for best outcomes for both of these people who have been such a loving part of my extended family over the years. I’ve wanted to do more for both of them for a while and maybe this is something we can try for her when she’s up to it.
Very nice for you to take an interest to help out your friend. I work in IT, and my approach is to seek out the experts first.
I’d contact those in the medical profession that deal with physical therapy and other various job titles which help with medical applications and ask them. Now I suspect since you don’t want to do this on the iPad, there are limited funds available, but that’s OK. You want to do all this to find out what high-end solutions are currently being done.
What you can do, is research this with those people and even if they come back with suggestions for a set-up that is very costly, you can look at the features there and see what is most important for your friend. Then look into how to adapt exactly those features needed most with the available hardware.
For example, there is the Raspberry Pi 2 which costs $40.00 and it a stand-alone general purpose computer about the size of a deck of playing cards, but a little bit thicker. The Raspberry Pi 2 is used in all sorts of laboratory situations and can even be used as a work station. You can connect a bunch of sensors to it, which are cheap to do all sorts of cool things. Like using it to monitor growing plants, sensors for water, light, temperature, etc. Then there are the Raspberry Pi 2 forums and you could get a ton of help there, but you need to start off with what is high-end out there and see what problems it has solved. Then it would be easier to post saying “This medical device X does Y that my friend could really use, how do I get that feature working at a low cost?”.
I sense that some people may not truly appreciate what aphasia actually means and entails.
It is a disorder of language. In other words, a person with aphasia cannot speak, write, use sign language (even ASL), or generate language in any way. Giving them a pen, or telling them to use their unaffected arm to write doesn’t help. It is not simply a problem of muscle weakness in the mouth, tongue, hand, etc. It is a fundamental problem in the generation of language (usually due to an injury/stroke/tumor in the left side of the brain).
Depending on the type of aphasia, they may be able, or not, to *understand * the language of others.
I disagree. Aphasia comes in many degrees and permutations. We don’t use the same parts of our brains to write as we do to tap as we do to talk. It’s very likely that some form of Augmentative and Alternative Communication (AAC) may help. And given that this happened from a stroke, it’s nearly impossible to determine which parts of the problem are due to difficulty in moving the tongue and lips (and those problems may or may not be muscular in nature), and which are due to the damage to the speech centers of the brain, until you get in there with a good speech-language pathologist and try things out. Drawings, gestures and writing are all recommended strategies to try. At the very, very least, the hospital should have a picture board, to see if it helps her better communicate her basic needs.
The most complicating factor I see here is that her stroke was 5 years ago. We’re now outside the 1 year mark for the greatest increase in neuroplasticity. But that’s no reason to give up trying. Research has shown improvement in function as long as 7 years after a stroke.
And, in the silver lining department, if she ever has another stroke, she may actually be in a better neural state for improvement than she is at the moment. If she has another stroke, jump on that opportunity to get her into intensive physical and speech therapy, immediately. Don’t view that as automatic evidence of further decline and give up. That’s actually an event that can work in her favor, if you play your cards right. The first year after a stroke is a time when the brain is even more trainable than any other time in adulthood, and new neural connections more easily formed as nerves reroute themselves around areas of damage, if you push the patient with lots of the right kind of stimulation.
