My thoughts on the EyeGaze Edge vs Tobii

JimInVA

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I received a request for my thoughts on the EyeGaze Edge from a Forum Member here. I attempted to reply to that message in my profile but could not post that message. Those that know me, are aware that I don't often reply in a sentence or two. This was no exception and it seems I might have max'd out what could be entered in my profile area. So I'll post here, refer to "here" back there and maybe a few others might gain some insight as they look to their own needs. So without another dozen words of preface, here's my post...

Greetings, Aziz!

In 2014, Darcey was evaluated by a local Speech Therapist and was recommended the Tobii. At that time, Tobii and Dynavox were the two main choices. We were recommended the Tobii. We would later come to believe that the only reason we were pushed towards the Tobii was due to the fact that the Speech Therapist got along well with the Tobii Sales/Training Rep... and that this was the device that she was most comfortable with. About that same time, Tobii was in the process of buying out the assets of Dynavox and merging it into their company. Tobii was so involved in the merger that they neglected their sales personnel and did not support them with after sales support of their new device users. Darcey received one training lesson and we were then left on our own.

For several months, Darcey tried to find comfort with the Tobii. The first problem she had was one of getting the device calibrated to her eyes. For the times that she was successful with that, she had difficulty with the software. Darcey didn't want much from the Tobii, but it was still having difficulties giving her even those few things. Darcey's needs were as follows:
  • Facebook - she wanted to be able to continue using Facebook as she was able to do on a normal computer. She has friends from all over the world and Facebook was the mechanism that allowed her to keep in touch with them. Unfortunately, Tobii's Facebook implementation was a joke.
  • Email - Darcey has a Microsoft Exchange Email account. She wanted to be able to read mail and reply to it... in addition to creating new mail items. Tobii's email implementation (as I recall) did not include an Exchange Mail component... only POP or IMAP. And while I could have converted her to one of the other formats, she quit using the device before I could do so.
  • Online Ordering - She wanted to be able to continue to order things online. The Tobii really didn't do "online" well.
  • Entertainment - She wanted to continue with her Netflix and Amazon Prime Movies and Series. I don't remember if/how that was implemented with the Tobii.
It was painful for me to watch. She went from extremely excited to angry and despondent. Unable to walk (at that time) and with her arms and hands beginning to fail her, she was losing her ability to use the computer and stay connected and involved with social media. Her world virtually shrunk overnight... and she was not in a good place, mentally. If I was unable to find the means to allow her to regain access to her friends, she wasn't going to survive long. I don't just believe this... I know this.

[END OF PART 1]
 

JimInVA

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Fortunately, I'd been able to take a hobby of computers and turn it into a full time business. I had been consulting, building and repairing computers since 1988. Leveraging that knowledge, I set Darcey up with Dragon Naturally Speaking. With Dragon, she was able to use her voice to control her computer just as if she were using her hands. As she was "limb onset" for ALS, her voice had remained strong. This configuration held her for a good period of time. But in the fall of 2018, Darcey's voice was losing its strength and its clarity. She was having to repeat herself more and more to get Dragon to hear and understand. Something else was going to have to happen... and soon!



I began researching options. Sure Tobii was out there... and sure they'd likely improved their product in the years since we used one of their devices. But the memory of the experience was like a wall that kept moving me away from any thought of looking at them again. I became intrigued with what I was reading about a company called LC Technologies that produced a device called the EyeGaze Edge. When there was nothing more to read, I picked up the phone and called the company. I spoke with James Brinton, their Assistive Language Coordinator and a Speech Language Pathologist. We talked about our past use of the Tobii, how we'd utilized Dragon voice dictation software and now needed to return to some type of eye control platform.



[Aziz... at this point you're probably realizing that I don't know how to make short, simple replies. If you've searched back through any of my threads, you'll find that I'm always on the "says more than less... ALWAYS" side of the equation. But if you reach out to ask a question, then I know it is important to you. Most of us are hesitant to reach out for advice unless it become "important". And if it is important to you, then it becomes important to me... and I don't want to shortcut you with a woefully inadequate response. So bear with me... I'm trying to give you the feel and benefit of my experience without you having to spend the time, cost and frustration that I've already been through.]



James first reached out to a number of organizations to see if any of them had an Eyegaze Edge available for loan. None did. He then reached out to companies that had expressed some minimal interest in perhaps funding the purchase of one of these devices to then donate to someone like the ALS Association. He found someone with interest but couldn't promise it would happen any time soon. So I asked if we could buy one outright. He said, "Sure you can do that... but they run $12 to$15 thousand dollars, dependent upon configuration." He then suggested that I try contacting our insurance company to see if we could get a waiver on the 5 years they require between purchase coverage... and even gave me points that might help with our request. Though he didn't hold out much hope, he did spend a considerable amount of time helping me with what might be persuasive to the insurance company. What felt good, was that what he was suggesting I say was all truthful. There was not a single deceit in anything he suggested. The Eagle Scout in me appreciated that!

[END OF PART 2]
 

JimInVA

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Ultimately, insurance would not budge and no loaner was available. We were going to have to bite the bullet and make this purchase out of pocket. Knowing how important Darcey's ability to continue to live through her friends was... versus simply surviving while waiting to die... took away any hesitation I might have on spending that amount of money... PROVIDED, HOWEVER, that it was something that would actually meet her needs. To that end, we set up an onsite demo for a month later.



A week and a half out from our demo, I received an excited call from James. "Jim! Jim! It is entirely possible that you won't have to buy your own Eyegaze Edge. I've just had someone agree to purchase and donate to the ALS Association in Richmond... which is your designated Loaner Locker. And I've talked with the ALS folks and they've agreed to let you have the older model that is being replaced by this new one. Is that something you might be interested in?!?" Of course I said, "YES!!!" :) He said that it looked like they could still meet the existing scheduled demo... but make this a demo with a leave behind loaner unit if it met with Darcey's approval.



Let me take a moment to point out what I'm sure you've already noted. James had a virtual lock on a $12K-$15K sale in place. He could have continued with that, still accepted the purchase/donation to the ALS Association, and would have had TWO SALES IN THE BOOKS. But that is not what he did. He, instead, looked out for our best interests over an extra sale that would have been in his own personal best interest. Let me repeat - "He Looked Out for Us!"



Darcey has been using this Eyegaze Edge for the better part of a year. But it is old, has a smaller screen than the new tablets and can't be upgraded beyond Windows 8.1. Darcey is now on Medicare, is past 5 years since her last purchase and it was time to seek something new. I called James and he suggested we seek a new evaluation from a local speech pathologist to get the ball rolling. I contacted Darcey's Neurologist, who contacted the speech therapist, who gathered a team together to work with us. A date was set and we teleconferenced. We met with an ALS Association individual (who we've worked with before), the Speech Pathologist associated with our hospital group and the area manager for Virginia from LC Technologies (Eyegaze Edge). It was a wonderful session. I'd already said that we were pretty sold on the EyeGaze Edge unless she (the speech pathologist) thought we should revisit Tobii prior to setting up a meeting. She said, "Nope... you already know both and have expressed a clear preference for the EyeGaze Edge. I don't know of anything that would likely change your mind."



And so... here we are. We are within a few weeks of setting up a new EyeGaze Edge. It was approved by Medicare... and approved by our supplemental coverage with Anthem. Darcey would tell you, "The EyeGaze Edge isn't perfect... but it is light years ahead of what we had with the Tobii!" Honestly, Darcey would rather not have ALS and still be able to type and talk as she used to. But that isn't our reality. And so we... from day one... try to make the best of what is our reality and do so each and every day. We're excited to be getting this new device. And to be getting it from a company that demonstrated from our very first contact that they will ALWAYS look out for us, first.



Aziz... I can't tell you what is right for you. But I can tell you our story... in the hopes that you'll find something in it that will help you with your journey... your choices... and, ultimately, with your decisions. Feel free to reach out with more questions... about this or anything else you think we might be able to help you with. If not too difficult, I'd love to hear about what you eventually decide and what your experiences are.



My best, good sir...



Jim
 

JimInVA

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Aziz,

I'm sorry for having to break apart my response. I've never had to do that before. I might be nearing my "lifetime max word count" here in the forums. :)

Jim
 

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you are such a gem Jim
 

KarenNWendyn

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Jim, thank you for your comments on the Eyegaze Edge. I have one that I received last fall. Our SLP determined I needed a device and that Medicare would pay for it. When I met with the SLP, our local Eyegaze Edge rep was present and gave me a demonstration. It looked like something I could work with, so I said OK. The rep then worked with me to handle the paperwork and get me my device.

Unfortunately, the rep sort of dropped the ball with me after that. He help me set up the device and gave me a couple tips, but basically disappeared after that and has not been accessible. I was able to contact Lori from LC Technologies in Virginia, and she did provide some support, but I would have wished for considerably more local support.

I will admit I have procrastinated in embracing the device, waiting until I can no longer use my iPad. The eyegaze was easy enough to figure out for communication, but I find using the internet challenging and I have not yet figured out how to set it up for email and texting. I have lost my voice but can still use my iPad with one finger, though I am losing that. Very soon I will be forced to use the Eyegaze and will just have to figure it out. I also have an iPhone, and I understand that the Eyegaze Edge syncs better with Android devices.

Would a Tobii have been better for me? Rumor has it that the Tobii is more cumbersome as devices go, but that our local Tobii rep is very helpful. So I think there are various factors to consider in choosing a device, with availability of local support being huge.
 

KarenNWendyn

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Addendum: I would recommend that anyone needing an eyegaze device talk to their clinic SLP and ALS care services coordinator. Find out what devices people in your area are using, whether they’re happy with them, and how they find the tech support.
 

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Thanks Jim. I appreciate the details. I bought the tobii pceye mini with the windows control software (like $1200). I was getting prepared for the eventual loss of hands and voice. I was able to use the Surface pro windows 10 tablet fairly well, including web browsing in a standard browser. The biggest problem is you must be positioned in front of the device properly and it's not very forgiving if you get out of position. For the last 1.5 years I have been only been able to move my head. I have been using Enable Viacam (eViacam). It's a head tracking/head mouse program for windows. It's free, and if you can move your head a few inches while sitting in a chair with a headrest and can take the time to setup and practice, it's absolutely fantastic. As long as my head moves I will not be using eye gaze. It's much less sensitive to position. Just need a webcam. There is also an android version that's pretty good, also free. If anyone needs help setting it up I am happy to help. I have attached my long description that I have posted a while back talking about home automation and how I have used technology. It might be helpful if someone wants to automate their environment. It was all written by me using Enable Viacam on a surface pro using the built-in webcam and my few inches of head movement. All the best everyone.
 

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Amaw

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Thank you so much Jim , appreciate the detailed response.
you are absolutely right, we usually hesitant to reach out for advice unless it becomes "important" .

Choosing AAC and choosing powerchair are two of the most important decisions we have to make and live with for a long time.

I've been back and forth between three choices :
-Eyegaze edge
-Tobii new I-series( I-16)
-Surface pro with PCEye plus from Tobii

I will be paying for AAC from my pocket :(, I'm from Saudi Arabia, we have a good governmental free health system but it does not provide for AAC, unfortunately.

Tobii new I-series has the advantage of being the latest so it's supposed to be fast and better.
Personally from what I read, I started to like Eyegaze edge better but it's old I believe, this makes me a bit concern about it being out of date in terms of speed and performance.

I've read many people switched to surface pro with eye tracker, I don't know how is their experience in comparison to Tobii or Eyegaze.

Fortunately, I still have some time my voice is strong and I can function with my hands, I will follow up with you Jim in a month or so to see how is Darcy's experience with the new Eyegaze.

Best,
Aziz
 

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Actually it would be awesome if Jim could give us an update on how Darcey goes with this, every few weeks or each month. If that isn't asking too much 💗
 

KimT

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Thank you Jim and Karen. Your posts helped a lot.
 

JimInVA

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Wow! What wonderful additional comments. I'm sure that many can find useful items in these posts. As I said in my post... and as others have either said or implied... we can tell you about what we've been successful with (or had issues with)... but we can't tell you what is right for your own particular needs. I'm always glad to see people ask questions, as Aziz (Amaw) did. Often we don't recognize the value of what we are individually doing that might be helpful for those who are looking ahead or having to make [now] decisions.

Karen - Darcey didn't immediately begin using the current EyeGaze Edge when she got it. She became easily frustrated with it and refused to use it. Then, doing things by voice was simply easier and in her comfort zone. When her voice could no longer control the computer, she had no choice but to move over to eye control. My son was a big help while he was home caring for me after back surgery. He sat down and used it himself to become familiar enough to instruct Darcey. When he returned home, I had to learn how to perform the calibration. Now, with practice, calibrations are normally done in a minute or two with results between 0.10 and 0.19. And Darcey has become more and more comfortable using it for the various tasks that she requires from it. It is not perfect and we're hoping that the newer version will have some better controls.

Jimi - I hope you can see me standing and applauding all that you've done to maintain "control" of so many things/functions in your surrounding environment. As I was reading your attached PDF, I had an ear to ear smile and kept shaking my head in wonderment. Well done, my friend!

My best...

Jim
 

JimInVA

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Update - Eyegaze Edge

Last night I signed the contract for a new Eyegaze Edge Talker. They now have two camera systems - one with a camera that focuses on a single eye (as we've been using) and one that focuses on both eyes. They recommended the single eye camera for Darcey as, for her, it would be easier to calibrate. The system price (Eyegaze Edge Talker) was $12,500 USD... and another $3,340 for a standing mount and a wheelchair mount. Total - $15,840.00 We've been told that our Medicare (Primary) and Anthem (Supplemental) would cover 100% of these costs. We anticipate we'll see the new device in another 1 - 2 weeks. I'll keep you updated as we go...

Jim
 

KimT

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Wow. Is eye gaze hardware and software under the same rule as PWCs which, I believe, you can get one every five years.

I know the Gleason Foundation pays for some home technology equipment other than eye gaze but PALS pay the cost of installation.

What really bothers me is that Medicare only pays rent on Trilogies and the amount per month is very high. My supplement covers the rest but some vented PALS live for years using Trilogies and you can get two! One for your PWC and another for your bed. That doesn't seem right.
 

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Thank you Jim for the update .

Keep it going .
 
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