MND hit us a few weeks/months ago. Speech solution ?

[PL31884]

Hello,

My father-in-law has been diagnosed with MND a couple months ago.

6-8 months ago (before the diagnosis) only symptoms were some trouble moving one hand. Today, he's basically completely paralyzed (only able to slightly move one arm) and speech is almost gone (it's extremely difficult, if not impossible, for him to say even a full word).

As you can guess we are quite lost, especially since evolution seems so fast. It feels like our knowledge and actions are always progressing too late, and any kind of delay for equipment or anything gets us worried it could just become inadequate when it's here.

We've at least managed to get him an electric bed and a manual wheelchair (we've been waiting for a specialized doctor's appointment for months now regarding how to choose an electric one. We've seen a neurologist but haven't succeeded in seeing an occupational therapist). Since he has some help at home it's already a step...

Another area where we'd need help, and the one I would like to please ask for your advice, would be regarding speech - hardware & software.

- For now our only lead would be the ACAT software. We found out about it because we researched how Hawking dealt with all this, figuring he ought to have had access to the best kind of setups (?). But once again, we have no real idea what we're doing here.

- Apparently ACAT only runs on Windows platform, so we'd have to buy a W10 pad or laptop, find a way to mount it on its wheelchair (hence probably pad rather than a laptop), and think about how to power it for long duration (find a way to attach some batteries on the wheelchair to ensure at least a few hours autonomy ? accept that the system is mostly an inddor one and thus that the simplest solution is to just plug it once my father and his wheelchair are "all set" ?)

- Figure out what kind of witch would best work for him, hoping it doesn't continue to evolve too fast...

- Any other tips or things to think about ?

As a potentially important note, we are french (and live in France), meaning we're really interested in software solutions that are available for French (ACAT is supposed to be, at least). That being said, of course please suggest anyway, and we'll investigate whether it can be set up for French.

Thank you all for your help.

Regards

[Lynne K]

Hi PL31884, I’m sorry about your fathers fast progression of MND. I’m sorry that I don’t know anything about ACAT. I’d never heard of it before your post and I’ve read 2 books about Hawkings. What I remember from those books is that Stephen Hawking got all of his voice software and wheelchair set up before voice banking became a possibility. He was offered to do this later and/or have a more human sounding voice but he rejected this because he and his public had gotten used to his robotic sounding voice that he controlled with eye gaze software. He wore a headset with a sensitive pad near to his eye on his upper cheek in his later decades.

I have Predictable with my banked voice (that I did with a US site who’s name escapes me just now). If one of you sounds anything like your dad then you could bank your voice for him which might be better for him than any other built in voice. Some users on here banked their voice with Acapela which is a European company that is reportedly better at capturing regional accent and Euroean languages. That may be a first step for you.

Good luck for getting services for your dad, and a good powered wheelchair loaned to him. Aren’t these that provided in France like they are in the UK? Lynne

[Ellie]

Welcome to the Forum PL31884 Sorry to hear of your FIL's diagnosis.

I have not used the ACAT software with switch harware, but have used switches on a Windows PC, before moving to eyegaze.

What I will say about using switches on a 'scan system' (such as ACAT) is that they can be pretty slow for the user, which can be tiring and frustrating in equal measures. That said, it is obviously a game changer in communication, if no other system is available to a person.

Eye gaze is much more responsive, then head tracking - both of these are 'point & click', as opposed to the scanning through icons, before clicking on the desired icon. The usual system used by people with ALS is a Tobii eye tracker and Grid/Smartbox software but, if self-funding, can be very expensive - which makes the ACAT software and switch system an attractive option.

If you are handy with technology, you could buy an eye tracking device and use with in-built W10 software (QWERTY keyboard only) or with free, open source software.

Have you been in contact with the SLA Association/Aide about communication equipment for him, if one is not provided to him by his hospital or clinic? They may be able to help your FIL.

Love Ellie.

[PL31884]

@Lynne : To be clear, for now, this is not about voice banking, this is just to recover some easier form of communication. I'll edit the OP to be clearer. Thanks for the tip regarding Predictable, we'll explore that. Yes, everything "should" be provided (or at least, paid for / 100% reimbursed), it just so happens that we haven't been able to have any pointers nor validation regarding electric wheelchairs (the manual one is supposed to arrive this week though and has been totally free of charge).

Ellie : THANKS A LOT for the specific recommendation esp. hardware. If switch+scan systems are to be avoided compared to eye tracker-based solutions, then eye tracker it is... We'll look into it asap.

Last we had an opportunity to talk with associations was at the beginning of December but at this time he still was able to talk almost normally. Maybe this can give you an idea of how sudden all of this is

I can be "handy with technology", but I am also wary of potential disappointment, frustration and fear of wasted time (basically, we're in a bit of a rush) if the result doesn't seem great for my father-in-law, especially in a world where I have no idea what should be achievable regarding words per minute or robustness/quality of the solution.

So I'm pretty sure we'll go for the solution that is most recognized / has the most chances to be successful right from the start. From your message, it seems to be the Tobii eye gazer and Grid Smartbox software.

Do you yourself use this software ? Do you have any info on it, like :

- Any recommendation on preferred platform ? It seems to be available both for iPad & Windows. Price aside (it seems to be available as a 10£ monthly subscirption on Ipad, but only as a full purchase for Windows), the online documenation states :

For Windows : 'Included grid sets:Super Core, WordPower, Fast Talker 3, Text Talker, Beeline, Vocabulary for Life, Symbol Talker A - D, First Words, Interactive Learning and more.
Included symbols:Widgit, PCS, SymbolStix, Snaps'

For iOS : 'Included grid sets:Super Core, Text Talker, Beeline, Vocabulary for Life, Symbol Talker A - D, First Words, Interactive Learning and more.Included symbols:Widgit, PCS, SymbolStix, SnapsIncluded voices:iOS standard voices, 1 additional voice free.'

Do you think the differences would be relevant ?

What about the device offered by the same company, namely the "Smartbox Grid Pad 15" (although on a price class of its own...) ?

Thanks again for your help.

[Ellie]

I think your start point is to know what your FIL wants from a PC/tablet - web browsing, email, text & talk, environmental controls (TV etc) - then you will have an idea of what is or is not viable.

Re Grid 3: the noticeable set missing from the iOS pack is Fast Talker https://thinksmartbox.com/product/fast-talker/
but it does have Alpha Core, which should be enough https://thinksmartbox.com/product/alpha-core/

Re Grid Pad 15: yes, deep pockets required! Obvious bonus is battery life compared to an iPad or Surface but it is made bulkier and heavier that battery.

I have a DIY setup - Tobii gaming eye tracker hardware and open source keyboard and mouse control software.

[PL31884]

Thanks again so much for your help...

Regarding PC vs tablet, do the available functionalities and/or the ones you just mentioned really differ between the two ? From our current situation, the basics of "web browsing, email, text & talk" would already be a huge improvement. Especially if it can be achieved "easily" -- buying a standard (read : ideally within typical standard prices...) pc or tablet, adding the eye tracker you mentioned. If it could be achieved this way, this could be a huge "quick win". He otherwise fortunately has some help at home, so environmental controls are less of a priority / requirement.

Regarding software, may I inquire on the open source keyboard & mouse control software you are referring to ? And why did you choose these instead of other solutions ?

[Ellie]

No real difference between laptop or tablet vis-à-vis functionality, that comes from software and peripherals, be it switches or an eye tracker.

I guess he has 4 options really, the first 3 of which need a tablet or laptop:

Try the free ACAT software with switches, which are cheap enough.
Get/buy Smartbox software and compatible eye tracker (probably around €1400) for a plug in and play solution (it does require set up steps)
Do it DIY by buying eye tracker and using open-source software. This requires the most work (downloading drivers, finding files) and has little or zero support. It's also a self-educating process in using the mouse commands but if he's familar with commands, it is straightforward.
Get/buy an integrated eye control system, such as the Tobii Dynavox ISeries. The least hassle, works out of the box, but most expensive, obvs.

I use the Tobii 4C, which unfortunately is no longer available in Europe 😟 (I have mine a while) but I see it’s available in the US https://www.microsoft.com/en-us/p/to...%3aoverviewtab

This is the software I use – it is superb. (The English text is beneath the Russian) I don’t know if the onscreen mouse commands come in French (Right, Left, Double, Keyboard etc.) but I do know they can be changed. https://github.com/MastaLomaster/bkb

I used the Grid software for a few days but it didn't really give me access to all areas of my PC., for my needs, I know that it is more than adequate for the vast majority of people. Plus, I was so used to working with Windows that mouse software which emulated normal Windows commands, coupled with an agile and accurate eye tracker, was very appealing.

I hope the SLA Association or the clinic can help your FIL in providing a tech solution.

Take care.
Love Ellie.

[Ellie]

I forgot about Camera Mouse, basic enough but might tick the boxes: http://www.cameramouse.org/

Tobii 4C works with W10's native eye control, so you wouldn't necessarily need 3rd party software.

[PL31884]

Thanks a lot as always.

We'll go for the eye tracking - based solutions as that seems just too much of an improvement v. switch based ones.

There are two possible steps / use cases for him :

#1 : on his desktop.

- At least he'd get back the ability to read/write emails etc.
- It would probably be a fast and risk-free (as in : not too expensive) first step giving him the opportunity to get used to this kind of controls and give us all a little time and experience to better figure things out for a next more full-on solution (that would be strapped on his wheelchair and have more functionality (speech etc))

Unfortunately his desktop is a Mac... and the Tobii eye trackers don't seem to be compatible with Mac OS. Support also specifically says "Running Windows emulated under Boot Camp or Parallel is unsupported", although I'm not sure how (an x86 Mac is just a PC with MacOS & a BootCamp Windows is just as real, and running on just as real and normal a PC as a Windows running on a "usual" non-Mac PC). I'll check whether I can set up a Windows on his machine.

Otherwise, this initial step would mean also specifically buying a PC for this => suddenly this loses quite a bit of interest wrt just going directly for step #2.

#2 : on/as an additional portable hardware on his wheelchair

Do you have any hardware recommandation ? I'd say :
- screen size is probably important, but in this very specific context I don't really know how much is "good", etc.
- say I have bought a Tobii EyeTracker (say the 5, the latest...), I would need to be sure I can physically mount it on the chosen laptop/tablet
- reasonable audio quality for speech ? but maybe speakers are always good enough for this and this is not an issue.
- need to make sure there is a way to mount the chosen laptop/tablet on the wheelchair !

To be clear, we'd be ready to just spend what a rather high-end laptop/tablet costs. If it was "just a usual laptop use", I would know exactly what I would want or prioritize. I just want to make sure we'll choose the laptop/tablet according to the right criteria for such a usage...

And if this indeed can be "just as simple" (and reasonably affordable) as a ~high end laptop/tablet + Tobii 5 + installing one piece of software like the one you link (as long as it's not buggy etc as day-to-day I am not around to help fix things up !), I think we'd just go straight for this one...

Thanks again for everything. Your help has been much appreciated already.

[Ellie]

The Tobii 5 is *not* compatible with any mouse emulation software that I know of, which is why I didn’t include it in possible solutions. Maybe it will be in the future, but Microsoft specifically says the W10 eye control doesn’t work with the Tobii 5, nor does mine. That’s not to say software doesn’t exist but, when I was toying with the idea of trying the 5, I looked hard for compatible software and found none. It might be a waste of money buying one. I know it's hassle buying from the US but, if you want a new 4C, there is not much choice.

I’m afraid IDK about macOS, can’t help you there.

Screen size doesn’t have to be huge – I work comfortably on both a 12in/30cm tablet and a 14in/35cm laptop. Device priority is battery life. System requirements: minimum i5 processor is recommended. 2.0Ghz. 8Gb RAM. CPU load is low enough. Speaker output can easily be boosted by external speakers, as you say.

Text-to-speech is possible on a Word document. There is also a Chat facility of Window’s own Eye Control.

A word on the Tobii 4C: it’s cheap because it’s a software development kit, a DIY, per se, so support is non-existent or minimal. That said, I have found it very, very reliable. As with all eye trackers, the user does need to calibrate their eyes at set-up, then to be aware to replicate that position for future use, or recalibrate. (I do this maybe every 6 months!)

Update: The Tobii 5 eye tracker is supported by Optikey, a free, open source mouse emulation and text-to-speech software available on GitHub.

[PL31884]

Thanks for the heads up on the 5 - I sure would have missed that. FWIW, some Googling reveals two relevant piece of info from the Tobii support forums : #1 they're "aware of the current issue with Microsoft Windows Control and the new Eye Tracker 5 and are actively working on providing resolution as soon as possible" (early july message) and #2 their Tech Support team can on request provide a special compatible driver (also hopefully hinting at a soon official release ?) (mid-october).

I personally would have no issue with a beta driver but of course it has to work, so can't really take that risk I guess. Still, how important / noticeable would you think the differences between the 4C & 5 are ? I understand each of the item on the list, but knowing whether this really matters or not (especially in this context) is another story...

[Ellie]

Yes, I've been following that Tobii forum - I guess it will eventually work, whenever somebody gets around to it....

IDK what they customised for the 5, it's deeper than what's on that comparison table.

Might be worth contacting Tobii directly (in Sweden) and asking if they happen to have any 4Cs for sale?

[PL31884]

Regarding tablet v laptop : aren't there any issues "mounting" a laptop on the wheelchair ? compared to a tablet ? Or is the tablet the only one you have mounted ? In which case, is it a Win 10 tablet like a Surface to use the Tobii, or do you use something else entirely with the tablet ?

Also, say we get a Tobii (4C or 5), and a Windows laptop or tablet. We just have to install the bkb software you've linked to before (the one available on GitHub) and we'll be all set ? (aside from a way to mount it all on the chair)

[Ellie]

Tablets are much easier to mount on a wheelchair, yes - my laptop stays on a table. Yes I use a Surface tablet too.

Tobii 4C needs drivers downloaded, prompted by its connection. - straightforward.
Calibration required.

Bkb download may be a bit more invoved, depending on your file management - not the actual download, but how you manage the files.
Some setup housekeeping such as speed of dwells etc. then it is ready to go.

[PL31884]

Once again thanks a lot for all the help and clarity.

It looks like we'll be going for a Surface + Tobii + Bkb setup and see how it goes from there.

The Surface X has larger screen and better autonomy but it's an ARM chip and I'm wary of compatibility issues (esp on 'niche' hardware & software like eye control), do you concur that the 7 is a better choice ?

Re 4C vs 5, were there any improvement on the 5 that you are looking forward to ? I'm trying to balance the slight risk of an in-the-works driver with the potential improvements...

Do you have any recommendation on mounting the Surface to the wheelchair ?