My ALS friend can help with asstistive technologies.

[[email protected]]

To All It May Concern:
I have been fortunate in knowing my friend and former boss for 25 years now. Three years ago my friend was diagnosed with ALS (Lou Gehrig’s disease). His name is Larry Savage. He is 57 years of age and he is in the final stages of ALS. I’ve been told only 3 to 4 thousand people are diagnosed with this disease in Canada per year. But over 3 million Canadians have a disability. Most can’t afford to pay out what is considered to be the quality of life they deserve and they suffer unnecessarily.
This is just one mans journey, my best friends’ journey. I believe everyone with a mobility issue or disability needs to read this.
It saddens me watching this terrible disease take its toll on him and his family. The once healthy, vibrant, energetic, productive man, now confined to a wheel chair and hospital bed, almost paralyzed from neck down, is hard to see. I could never imagine how difficult it would be being in his shoes.
I can’t imagine being in a body that doesn’t work. Larry does because he lives 24/7 like this. Knowing what it is like losing his independence and having to rely on family and caregivers, Larry and his family have developed a solution that provides him with more independence, security and sense of control. That solution is called AbleSoft©, a new assistive technology for mobility disabled people. Because I have seen the benefits of what AbleSoft© does through the lives of Larry and his family, I cannot stress enough the importance of having this system in place for those that need them and having the comfort in knowing that there is another solution that is affordable for all.
It was through experience and lengthy research that Larry, his son and his brother discovered there were other solutions that could help others with similar conditions as his. Their solution was to create AbleSoft©, a software program and system whereby everyone can use it, everyone can have access to it and everyone would be able to afford it. Adaptability, accessibility, and affordability are amongst AbleSoft©’s paramount goals for people with limited mobility.
To describe AbleSoft©, It is a software program which is installed in a computer. Once installed and programmed, it allows Larry to control certain household devices within his environment. By means of a simple voice command, IR system, sitting in his wheelchair or lying in bed, AbleSoft© allows him the ability to control and perform tasks such as turning lights or heaters on and off. AbleSoft© allows access to controls for many devices including, door locks, intercoms, adjustable beds, audio/video cameras for monitoring and security, televisions, internet access for communication and web browsing, etc. With AbleSoft© Larry’s family and caregivers can also monitor him from their office, home or anywhere with internet access at any given time. With AbleSoft© my friend has had so much of his independence and control over his daily living restored, too many to mention. His quality of life has been substantially improved and the relief of personal stress and frustration on him, family and caregivers has been dramatically reduced.
With AbleSoft©, the installation is simple. The programming is simple. All that is needed is a voice command with the AbleSoft© control systems, to dictate and control what you want done. AbleSoft© provides peace of mind, knowing you have more security and the ability to once again control your surroundings the way that you want.
The importance of giving back independence and control to someone who has limited mobility or who is essentially immobile and at an affordable cost is what we need people to be aware of. We need a voice out there. People who can especially benefit from AbleSoft© need to be made aware that it is a solution that works. AbleSoft© has been proven to work for my friend Larry, I’ve seen it work and it can work for anyone… it just needs the voice out there so that everyone that needs it can have it. Its adaptability, accessibility, and affordability, will make their lives much easier, peaceful, and less stressful for all.
My friend and his family have endured extensive costs dealing with this disease. I believe what Larry and his family have developed is an absolute asset and tool for anyone who is dealing with limited mobility issues. Everyone deserves quality of life and most of all; it should be made affordable for everyone.
AbleSoft© needs funding for further research, development and to have the implementation of these systems to the homes and facilities of the people who need it the most. Let’s start talking about not having to spend a ridicules amount for the assistive devices many need. There is another less costly alternative.
Thinking of my friend, Larry, and trying to help all alike. Tamarra

 

[Phil M]

Humm.................

 

[BarryG]

Tamara, thanks for this. We all need solutions for our failing bodies and this looks great the only problem is that many of us cannot give voice commands. Not unless all the commands are "urrgggmmff".

Maybe this system could be adapted to work with an eyegaze system for those of us that are speechless? I am not there yet but my arms and legs are weakening and I am a tech lover so I would love to be able to control my environment for as long as possible.

 

[[email protected]]

Hi Barry,

My friend does know about eyegaze systems and such. You'd be amazed to know what he knows and has developed after being diagnosed with this disease. Larry has used this system before. Larry no longer has use of his hands or legs. Larry uses an IR head movement systeem in the wheelchair and bed but loves the fact he can control other tasks by himself using voice control in both locations. He would best be able to tell you a lot more through this words and me typing the emails. I will definitely ask Larry what else I can tell you tomorrow.
How do you think we can let the people who need to know really get access to this new technology and information?
Larry and I have tried hard but it seems at times no one gets to hear this?
Thank you so much for your interest. It is my first time posting this.
Tamarra

 

[joelc]

I can no longer talk or type so I have a device that operates by using a button and can be programmed for anything. It is also cheap. I am sure your device is great but it requires a computer and voice which makes it unsuitable to many of us.

 

[[email protected]]

Hello Joel,

I thank you for your information.

I know that what Larry has developed doesn't need voice command or the ability to type or touch. Larry no longer has use of his hands, arms and legs. I'm not a tech person but watching him use this system amazes me.

I'm really interested in this push button system you mentioned you use? I'd love to tell Larry about it.
What can you get it to do for you? How do you make it work for you? Is there a place you would recommend where he could purchase an item like that?

This sounds very interesting and I'd love to tell Larry about it?

Thanks, Tamarra.

 

[joelc]

Hi Tamarra,

I got it from an organization called TIL (Technology for independent Living) who provided it free of charge for as long as I need it. It controls the TV, satellite receiver, DVD player, VHS player, our sound system, lights and the bed. It can easily be programmed for anything that has a remote control. It is small and mounts on my wheelchair. It has a numbered pad that is 3 across and 6 down. There are 5 levels. It is a GEWA product.

I hit the button once and it starts scrolling down, I hit the button again and it starts scrolling over. I hit the btton again and it selects the function the LED Light is on. If you can still use your fingers you can use the keypad on the device.

It works wonderfully.



Programmable hand-held IR transmitter with 18 buttons.
Max 65 functions in 4 levels. This transmitter can
learn channels from other remote controls such as
TV and video. One or several buttons can be
adapted to coding; choose between 4096
different codes e.g. for door locking
procedures. Macros can be programmed.
With overlay and neck-strap. Operated with
four 1,5V LR03 (AAA) Alkaline batteries.
Batteries not included.
Size
120 x 65 x 16 mm
Weight 170 gr
(incl batteries)
Operating force
<1 N (100 gr)

 

[JeffP]

i need to get me one of them joel

 

[Al]

So Tamarra, ballpark figure, how much is your system worth?

AL.

 

[[email protected]]

Hi Joel,

Thank you for letting me know.

I've had to deal with Ontario organizations that don't seem to come by free for anyone here. And Upper Management does not want to hear about anything or they're not willing to do something, even as thrilled as they say they are.

Your system sounds wonderful.
What will happen when you are unable to press buttons? That is what Larry asked? Have you thought of that?

This system he has in place can do everything you mentioned. I know all will enjoy the benefits of this system. And even more so after they can't move or speak. This system Larry has, is really good with adapting to meet what anyone needs, as conditions change. Larry wants to help everyone. I wish I could spread the word to others.

Just wondering about your thoughts.

Take care, Tamarra.



Hi Tamarra,

I got it from an organization called TIL (Technology for independent Living) who provided it free of charge for as long as I need it. It controls the TV, satellite receiver, DVD player, VHS player, our sound system, lights and the bed. It can easily be programmed for anything that has a remote control. It is small and mounts on my wheelchair. It has a numbered pad that is 3 across and 6 down. There are 5 levels. It is a GEWA product.

I hit the button once and it starts scrolling down, I hit the button again and it starts scrolling over. I hit the btton again and it selects the function the LED Light is on. If you can still use your fingers you can use the keypad on the device.

It works wonderfully.

 

[Al]

Did you miss my post Tamarra?

AL.

 

[ZenArcher]

With the exception of remote monitoring you can do all of that with a laptop or netbook a $50 USB-UIRT a $5 plug-in outlet and Silver Tongue which is free.

Features:

• Works with any SAPI 5 complaint voices and has been tested with
  • AT&T Natural Voices
  • Cepstral
  • Microsoft
  • ModelTalker
  • NeoSpeech (recommended)
• Provides settings for voice pitch, rate and speed
• Provides inline SSML
• Provides both word and phrase prediction
• Provides an alternative input method that requires little to no "clicking"
  
  
• Allows for custom pronunciation
• Learns words and word usage over time
• Analyzes and suggests common phrases or phrase fragments based on history
• Allows for the addition of custom tabs and buttons
• Button appearance can be customized
• Buttons can be assigned to speak text or play audio files
• Contains a phrase system which allows for categorization and limited scripting in phrases
• Contains an 8 device programmable universal remote control (requires USB UIRT)
  
• Contains a phone interface (in testing, requires Way2Call modem)

I've seen the same post almost word for word at least three times all selling the software but no screenshots, nothing I can find on the web and no hint at a price or availability. There is however an ask for money. Just smells fishy to me.

 

[[email protected]]

Hello Al,
Sorry I didn't get back to you quickly, I am new at this. I asked Larry about the unit that Joel has and he was impressed that he could get it for free. Larry's Occupational Therapists didn't seem to know anything about equipment like that. Larry said Joels unit is worth about $500.00 but is limited to IR remote controlled systems. The system that Larry uses is expandable in many areas because he knew he was just getting worse. He wants to know if you were interested in a system that could do what Joels does or one that could be expanded to include things like intercoms, emergency helplines, telephones, monitoring cameras, electrical kitchen outlets, stove, email access, word processing, video conferencing, etc.
Larry said he had to build systems that would be able to help him when he wouldn't be able to move or talk anymore. Larry can't push buttons anymore but he will be able to continue to use his system until the end.
Is it a price for what Joels system can do that you want?
Thanks Al,
Tamarra

 

[Al]

I wasn't looking for anything specific. I was just looking for a ball park idea of what Larry's system would cost. More for the information of the forum than me personally.

AL.

 

[lsavage2000]

The first part of this post is a direct response to ZenArher’s post In which he said:

“I've seen the same post almost word for word at least three times all selling the software but no screenshots, nothing I can find on the web and no hint at a price or availability. There is however an ask for money. Just smells fishy to me.” - ZenArcher

We want everyone to know from the onset that at no time did we seek or want funding from anyone who has been stricken with a disease or accident that has left them disabled. Since I was diagnosed with ALS in 2007 I have been disgusted by the prices charged to our disabled community for assistive devices. It is for this reason alone that we began to create and modify assistive devices to improve quality of life.

The assistive device prototypes we have created have been viewed by local Occupational Therapists, a Physiotherapist, three Personal Service Workers, Nurses, Doctors, a CCAC Case Manager, and two local Home Care Business Managers. All of them have said the same thing: “We have never seen any systems like yours in the homes of clients we care for.”

Our prototypes have also been viewed by the Director of ALS Simcoe/York Region and the President of ALS Ontario. Their response was similar to the others. So far we have been seeking our funding from corporations, businesses and the organizations associated with the major disabling diseases. The most positive responses have been from the ALS and Paraplegic Societies which we have been told are actively seeking funding. The other organizations, although enthusiastic, have stated that their mandate unfortunately does not allow them to get involved with funding projects of our nature.

You, Jeff, have exposed a critical flaw in our approach. You are suspicious about the reasons we are seeking funding. Our intention is to create assistive devices that are ready and easy to use by people with disabilities. Our systems are designed to adapt as symptoms progress and our goal is to make them accessible so that everyone knows that there are solutions. Most of all, affordability is paramount in allowing everyone the opportunity to improve their quality of life. By striving for these goals we are attempting to prevent needless suffering caused by lack of access and/or funds.

We are also working on getting a USB-UIRT device to explore the capabilities of the programs like Silver Tongue that you mentioned. Please be aware that someone in the advanced stages of ALS as I am could not operate this program without additional hardware and software that enables use of a mouse cursor through alternate means. Expertise of your kind is needed and appreciated. We don’t want to see anyone who has a disability scammed or oppressed in any way. We appreciate you looking out for their best interests.


Al, because we are still in the prototype stage and because we are still developing new assistive devices, giving a cost estimate is difficult without knowing which components a disabled person needs during various phases of their disease.


We would welcome any of you to contact me directly to view what we have. If you are not able to, maybe we could arrange for you to speak to a representative from the ALS Society.

Thanks everyone for your contributions, I hope this helps.

Regards,

Larry