2 posts tagged “assistive technology”

Communicating with ALS: From devices to voice banking

Posted January 17th, 2018 by

 

Difficulty with speech and communication is a frustrating reality for many living with ALS. From apps to devices and voice banking, communication is a popular topic (as in over 35k conversations) on PatientsLikeMe, so we took a closer look into some of the options out there for pALS.

Tablets: Windows vs. iPad vs. Android

Trouble with typing or hand weakness? Amy, an augmentative communication specialist at Forbes Norris ALS Research and Treatment Center, recommends Windows (8 or 10) and Android tablets:

  • Windows devices have USB ports which makes them the most compatible with accessories like a mouse, joystick, eye tracking or head tracking device.
  • Androids may be compatible with these accessories as well, but often require a USB adapter. Adaptors are specific to the Android port and are inexpensive and easy to find online if you search for “USB adapter” and the make and model of your Android device.
  • iPads don’t offer these accessory options that use a pointer because their screens don’t display a mouse cursor. They do offer switch scanning access methods (a system by which a series of choices are highlighted and can be selected by hitting/activating a switch) for people who can’t use their hands on a screen or external keyboard. Some pALS find scanning too slow compared to cursor movers like a mouse or eye tracking.

Text-to-speech apps:

If you have difficulty speaking, there are many app options that convert text to speech:

Want to know more about communication devices? Check out Amy’s tips for paying for your tablethands-free options and message and voice banking.

Voice banking:

Many people with ALS who experience problems with speech, voice, and communication choose to preserve their voice for future use.

How does voice banking work?

Voice banking is a process that allows a person to record a set list of phrases with their own voice, while they still have the ability to do so. The recording is then converted to create a personal synthetic voice.

When the person is no longer able to use their own voice, they can use the synthetic voice in speech-generating communication devices to make an infinite number of words and sentences. The “new” voice isn’t a perfect replica of the person’s natural speech, but it will bear some resemblance.

Want to bank your voice?

Check out these options:

ModelTalker: A software designed for people who are losing or who have already lost their ability to speak. It allows people who use a Speech Generating Device (SGD) to communicate with a unique personal synthetic voice that sounds similar to their own voice.

Message Banking: An app that enables you to record and save messages in your own voice that can later be imported into a Speech Generating Device (SGD) or several tablet communication apps.

VocaliD: A platform that creates unique vocal identities for any device that turns text into speech. From just a three-second sample of sound that you make, the app can match you with a speaker from its voice bank and blend your vocal sounds with their recordings. Check out this moving video to see how voice banking changed the life of one man living with ALS and gave his family a piece of something they thought they had lost forever.

How much does it cost? Recording and banking your voice is free with programs like VocaliDMessage Banking or ModelTalker. With VocaliD, you only pay to download and use your synthesized voice. Pricing starts at $1,199.

When should you bank your voice? VocaliD recommends that you bank your voice sooner rather than later. With two options from VocaliD, you can bank your voice no matter where you are in your speech loss:

  • BeSpoke Voice: For people with speech impairment who are able to record three seconds of sound.
  • Vocal Legacy: For people who want to preserve their voice for the future and are able to record several hours of speech.

Have you banked your voice? Do you use a synthesized voice? Join PatientsLikeMe today to share your experience.

 

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Life with ALS: What We’ve Learned

Posted December 20th, 2011 by

Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease).  Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population.

Some of the Most Commonly Reported ALS Symptoms (and Their Reported Severity) at PatientsLikeMe

ALS, which stands for amyotrophic lateral sclerosis, is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Some of the most debilitating symptoms include progressive weakness, atrophy, fasciculations (muscle twitches), dysphagia (swallowing difficulty), and eventual paralysis of all respiratory function.  Other commonly reported symptoms are shown in the chart above.

Given the severity of ALS symptoms, the life expectancy of an ALS patient averages two to five years from diagnosis, according the ALS Association (ALSA).  However, ALSA states, “The disease is variable, and many people live with quality for five years and more.”  Rachael, who is six years post-diagnosis and living a busy, active life thanks to assistive technology, is a perfect example.

What does assistive technology entail?  For many ALS patients like Rachael, this involves the use of medical equipment to aid basic functions such as:

How well do these interventions work?  Click on each treatment name above to read evaluations from hundreds of patients about the effectiveness, side effects, cost and more.  In addition to these various types of equipment, one of the most commonly reported treatments for ALS is Rilutek, the first prescription drug to be approved specifically for ALS.  While it does not cure ALS or improve symptoms, it may extend survival or the time to tracheostomy (the creation of an artificial airway in the throat), which occurs when a patient is no longer able to breathe on his or her own.  Currently, we have 1,124 patients taking Rilutek, with 293 treatment evaluations submitted.

Some of the Side Effects Our Patients Report for the ALS Drug Rilutek

What do patients say about this drug?  We leave you with a sampling of comments that patients have shared on their treatment evaluations.

  • “One day I was having tremors in my left arm. I took the Riluzole [generic name for Rilutek] and one hour later the tremors stopped. I know it is helping.”
  • “I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer.”
  • “It is a slight pain because you’re not supposed to eat for two hours before or an hour after, and I’m trying to keep weight on.”
  • “I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I’ve been told it’s more effective when you start taking it early like I did.”
  • “Quit taking due to elevated enzymes in my liver. Drug caused increased hunger, protein cravings, and very sluggish feeling.”
  • “Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole, the cost is approximately $985 per month.”
  • “We can never know if Rilutek does any of us any good. If it doesn’t seem to be doing any harm, I believe it is better to take it than not to.”

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about ALS.