Multiple sclerosis & Tech Quality of life help!

[MrWhitby]

Hi LTT Forum!

 

I am desperate for advise and help. I'm soon to be moving out from my mums home. She suffers with Multiple sclerosis and has done since I was born. She has nearly lost all ability to use her hands with any kind of precision.

She currently relies on an IR tracker for her Desktop PC (Similar to TrackIR) which I'm familiar with and it appears to work well for her. However my biggest concern is at night-time she uses an iPad to control the Chromecast on her TV using apps like iPlayer (UK), ITV (UK) and Netflix but she has an extremely difficult time using her hand to move her stylus to said App, then navigate finding a program, then press the Chromecast icon, then the CC Device and then play. She's usually just about to unlock the iPad so running through these steps is just not working.

 

So that explains our current situation and main issue but to give some background.

 

She currently has an Alexa, connected to her Kitchen and Bedroom lights which work great. I've found that basic hardware works well with Alexa but cannot seem to find any deeper application integration, such us finding content on Netflix through voice. I would like to find something maybe around EyeTracking. I'm a TrackIR user personally and it works great for me and her similar product for PC but I can't seem to find anything within a reasonable budget, almost like those that are on a strict budget must find thousands to make their lives easier.

 

Ideally I'm looking for something that can be explained to her in simple non-techy terms, that just adds to her ability to enjoy life a bit more to not have the stress of having to sitting in the dark with no entertainment because she's too weak to do the above. This isn't an attempt of a Sob story btw it is simply to cold hard truth of the situation. I have a list as long as my arm of non-techy concerns that are stressing me out beyond belief but I'm just working my ass off to get her comfortable before I live so she is happy and I can spend a minute to enjoy my own life without an element of worry.

 

Our budget is rather slim, but I'm a techy by trade so I'm willing to jump through hoops as long as it works for my Mum and is reliable. For reference I am moving out of the country so there's no simple hopping back home to fix something.

 

I really, really appreciate any advice!

[Jtalk4456]

19 minutes ago, MrWhitby said:

Hi LTT Forum!

 

I am desperate for advise and help. I'm soon to be moving out from my mums home. She suffers with Multiple sclerosis and has done since I was born. She has nearly lost all ability to use her hands with any kind of precision.

She currently relies on an IR tracker for her Desktop PC (Similar to TrackIR) which I'm familiar with and it appears to work well for her. However my biggest concern is at night-time she uses an iPad to control the Chromecast on her TV using apps like iPlayer (UK), ITV (UK) and Netflix but she has an extremely difficult time using her hand to move her stylus to said App, then navigate finding a program, then press the Chromecast icon, then the CC Device and then play. She's usually just about to unlock the iPad so running through these steps is just not working.

 

So that explains our current situation and main issue but to give some background.

 

She currently has an Alexa, connected to her Kitchen and Bedroom lights which work great. I've found that basic hardware works well with Alexa but cannot seem to find any deeper application integration, such us finding content on Netflix through voice. I would like to find something maybe around EyeTracking. I'm a TrackIR user personally and it works great for me and her similar product for PC but I can't seem to find anything within a reasonable budget, almost like those that are on a strict budget must find thousands to make their lives easier.

 

Ideally I'm looking for something that can be explained to her in simple non-techy terms, that just adds to her ability to enjoy life a bit more to not have the stress of having to sitting in the dark with no entertainment because she's too weak to do the above. This isn't an attempt of a Sob story btw it is simply to cold hard truth of the situation. I have a list as long as my arm of non-techy concerns that are stressing me out beyond belief but I'm just working my ass off to get her comfortable before I live so she is happy and I can spend a minute to enjoy my own life without an element of worry.

 

Our budget is rather slim, but I'm a techy by trade so I'm willing to jump through hoops as long as it works for my Mum and is reliable. For reference I am moving out of the country so there's no simple hopping back home to fix something.

 

I really, really appreciate any advice!

First off, you sound like a really great son! 

Second, I'm not an expert in this but I'm good at doing some research. What country is she in so I can look up some options?

[IkeaGnome]

Have you looked into Tobii? 

I haven't looked into it, but maybe switching her tv to a simple cheap HTPC with Tobii and one of the wireless presentation clickers, but with 4 or 5 buttons could get her by? The hard part would be typing, but if one of the extra buttons was a hot key to open OSK she might be able to just look at the keys and left click. If you're staying close by it could still mean some work for you. If you have her browser all signed into her Netflix and other things she uses, in theory by just clicking one button, looking at "N" and clicking a different would give her the link to Netflix. 

I would think 4 keys could get by. Left click, right click, macro an Alt+Tab for that Tobii functionality and then the other for OSK. As far as which clicker you'd need, I have no clue what ones have easily programmable keys or not.

[MrWhitby]

9 minutes ago, Jtalk4456 said:

First off, you sound like a really great son! 

Second, I'm not an expert in this but I'm good at doing some research. What country is she in so I can look up some options?

Thank you! I’m in the UK. 
 

Moving out in August so have some time to get things sorted and in order. 
 

A million times thank you again. I really appreciate it. 

[Jtalk4456]

18 minutes ago, MrWhitby said:

Thank you! I’m in the UK. 
Moving out in August so have some time to get things sorted and in order. 
A million times thank you again. I really appreciate it. 

So here's what I could find with some quick research:

Resources from the NHS - IDK how the healthcare system works in UK, but this page has lots of links for requesting grants, talking to local council, groups to help you find equipment for these needs, etc. could be a good place to start

https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/household-gadgets-and-equipment-to-make-life-easier/
this one seems a bit more geared to mobility, but also mentions telecoms and home adaptations, so can't hurt to check
https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/care-and-support-you-can-get-for-free/

This one seems more general info, but has some links that might be useful
https://www.verywellhealth.com/ms-technology-5225481#:~:text=For those with nonstandard speech,and other smart home devices.

Here's the MS foundation page for their assistive tech program. Not sure if they operate in the UK, but found a few similar programs specific to the UK too
https://msfocus.org/Get-Help/MSF-Programs-Grants/Assistive-Technology-Program
Here's the UK specific ones
https://ms-uk.org/#:~:text=We are here for people,diagnosed every week on average.
https://www.mssociety.org.uk/care-and-support
https://mstrust.org.uk/life-ms/your-finances

https://mstrust.org.uk/life-ms/your-finances/grants-and-financial-help

https://mstrust.org.uk/life-ms/your-finances/benefitshttps://mstrust.org.uk/life-ms/home-and-travel

https://mstrust.org.uk/life-ms/home-and-travel

I also found this small piece about alexa and netflix integration. hopefully it's of some help
https://www.lifewire.com/connect-alexa-to-netflix-4783118
 

[MrWhitby]

3 hours ago, IkeaGnome said:

Have you looked into Tobii? 

I haven't looked into it, but maybe switching her tv to a simple cheap HTPC with Tobii and one of the wireless presentation clickers, but with 4 or 5 buttons could get her by? The hard part would be typing, but if one of the extra buttons was a hot key to open OSK she might be able to just look at the keys and left click. If you're staying close by it could still mean some work for you. If you have her browser all signed into her Netflix and other things she uses, in theory by just clicking one button, looking at "N" and clicking a different would give her the link to Netflix. 

I would think 4 keys could get by. Left click, right click, macro an Alt+Tab for that Tobii functionality and then the other for OSK. As far as which clicker you'd need, I have no clue what ones have easily programmable keys or not.

I have looked at Tobii but only at their accessibility products that are priced in the thousands. Unfortunately I’m moving to another country so not going to be easy to troubleshoot without remote access. 
 

now something I have come to the idea of is replacing her iPad with a small cheap laptop that she can use eye tracking but also allow me remote access to if there are any issues. 

[MrWhitby]

2 hours ago, Jtalk4456 said:

So here's what I could find with some quick research:

Resources from the NHS - IDK how the healthcare system works in UK, but this page has lots of links for requesting grants, talking to local council, groups to help you find equipment for these needs, etc. could be a good place to start

https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/household-gadgets-and-equipment-to-make-life-easier/
this one seems a bit more geared to mobility, but also mentions telecoms and home adaptations, so can't hurt to check
https://www.nhs.uk/conditions/social-care-and-support-guide/care-services-equipment-and-care-homes/care-and-support-you-can-get-for-free/

This one seems more general info, but has some links that might be useful
https://www.verywellhealth.com/ms-technology-5225481#:~:text=For those with nonstandard speech,and other smart home devices.

Here's the MS foundation page for their assistive tech program. Not sure if they operate in the UK, but found a few similar programs specific to the UK too
https://msfocus.org/Get-Help/MSF-Programs-Grants/Assistive-Technology-Program
Here's the UK specific ones
https://ms-uk.org/#:~:text=We are here for people,diagnosed every week on average.
https://www.mssociety.org.uk/care-and-support
https://mstrust.org.uk/life-ms/your-finances

https://mstrust.org.uk/life-ms/your-finances/grants-and-financial-help

https://mstrust.org.uk/life-ms/your-finances/benefitshttps://mstrust.org.uk/life-ms/home-and-travel

https://mstrust.org.uk/life-ms/home-and-travel

I also found this small piece about alexa and netflix integration. hopefully it's of some help
https://www.lifewire.com/connect-alexa-to-netflix-4783118
 

That’s incredible and kind of you. Truly appreciate you spending the time looking into this. I’ll have a read through the links. 
 

unfortunately with the NHS and grants they tend to take months to be discussed then approved and then provided. Amazing as they are they’re extremely understaffed and not very timely with these sorts of issues. 
 

Im definitely interested in the Netflix & Alexa integrations. 
 

thank you again. 

[MrWhitby]

Whoops, didn’t realise the tick created a solution! Still open to anyones advice! 

[IkeaGnome]

13 hours ago, MrWhitby said:

now something I have come to the idea of is replacing her iPad with a small cheap laptop that she can use eye tracking but also allow me remote access to if there are any issues. 

That might not be a bad idea. You can get some 2 in 1s for pretty cheap judging by a quick scan on Amazon. A 2 in 1 would let her keep the accessibility of a tablet, but gain you the troubleshooting of a computer with easier remote in options. The down side to Tobii and a laptop is that the eye tracker has to be mounted to the computer. I don't know how well it would stay on it in tablet form. 

I haven't messed with Tobii. I went from TrackIR to VR for games. 

Another option would be this. Are you an only child, or is there someone else that can poke in on mom when she needs help? If so troubleshooting and settings stuff up could be as simple as you being on the phone saying "push this, try that" and someone else going through the motions for mom.

 

Edit: Also tagging @GOTSpectrum. They might have some more ideas, and are also UK based so they might have a bit more "UK based knowledge"

[MrWhitby]

20 hours ago, IkeaGnome said:

That might not be a bad idea. You can get some 2 in 1s for pretty cheap judging by a quick scan on Amazon. A 2 in 1 would let her keep the accessibility of a tablet, but gain you the troubleshooting of a computer with easier remote in options. The down side to Tobii and a laptop is that the eye tracker has to be mounted to the computer. I don't know how well it would stay on it in tablet form. 

I haven't messed with Tobii. I went from TrackIR to VR for games. 

Another option would be this. Are you an only child, or is there someone else that can poke in on mom when she needs help? If so troubleshooting and settings stuff up could be as simple as you being on the phone saying "push this, try that" and someone else going through the motions for mom.

 

Edit: Also tagging @GOTSpectrum. They might have some more ideas, and are also UK based so they might have a bit more "UK based knowledge"

Thank you! 

 

I'm not an only child, however my sister lives in Vietnam now so we're all over the place. I do have some close relatives, SO's family isn't too far away but based on her needs I'm not comfortable ringing those to pop in to pick something up off the floor or to put something on the TV, I'd like to save it for when she is in desperate need for help. 

 

I'm  the same as you, I've used TrackIR for years and on occassion still use it but moved primarily to VR. I'd be lying if buying a Reverb G2 or Oculus for her to watch Netflix in cinema applications hasn't crossed my mind more than once, but having her carers handle expensive electronics to get it on her head is a daunting task to say the least. The removal of the headset would also be a challenge. But it would be a great idea, but doesn't solve the core issue of having to select films etc. 

 

I did read through the Alexa / Netflix integration and that might be worth a test. Albeit it doesn't solve the issues with other lesser known apps like iPlayer / ITV it would stop my horror scenario of her sitting in the dark by at least having an option even if it isn't her first. 

 

I am very much thinking a 2 in 1 touchscreen is going to be the best choice here, flexibility and ability to remote. Ability to arrange the desktop and interactions. Feel like this would make a good LTT video with a bit of research, would definitely help me out