3 posts tagged “mobile app”

Communicating with ALS: From devices to voice banking

Posted 7 months ago 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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PatientsLikeMe usability study for mobile app

Posted June 3rd, 2015 by

Designing a new app is like designing a car. Your engineer and designer may have done a flawless job, but nothing matters until the person actually steps into the driver’s seat and test-drives the product. So when it came time for us to launch the first pass at our new mobile app, called PLM Connect, that’s exactly what we did. We invited a handful of members to come into the PatientsLikeMe office and test-drive the app.

Alex (ITalkToTheWind), a PatientsLikeMe community member, took some extra time to share about her experiences testing the app in an interview. One of the features, InstantMe, is a tool on the PatientsLikeMe website that’s a simple way to track and share how you’re doing. In this first pass of the app, and since she’s become a member in 2010, Alex has posted more than 1500 (!) InstantMe updates. Not only was she extremely helpful with her feedback, but she also brought in the artwork she’s created based on her InstantMe entries. Everyone on the PatientsLikeMe team was honored that Alex brought her art into the office for us to see, and we wanted to share it with the rest of the community, too. Here’s her story: 

Alex, what was it like doing the usability testing?
It was great to come down to the PatientsLikeMe headquarters to give my personal feedback on the first pass at PLM Connect.

I update my InstantMe every day, so I’ve been very eager for an application I can use while I am away from my computer so my charts can be as accurate as possible. Throughout testing the beta application, I got to dictate my thought process step by step with the engineering team. I communicated different ways to improve the application’s features, programming and design to make it more user-friendly and to have it operate more smoothly.

I also got to tell the team what my personal wants would be for a PatientsLikeMe application. Since I am an artist, it was great to be able to talk about how the design could compliment the different functions of the application. I mentioned how important it is to carry over the community and support aspect that is available at the main site over to the application. Overall, I was trying to think about the entire diversity of conditions in the community and how they could benefit using the application, and how to make it as easy to use as possible.

How do you use InstantMe on PatientsLikeMe?
I’ve been using InstantMe religiously to keep track of my moods for five years now, since I was diagnosed with my primary condition and began my treatment process. I basically see everything I’ve accumulated through my InstantMe as a diary of my life for the past 5 years.

It is very important to me to see how my treatments, symptoms, and life events all correlate with my moods to understand what is or isn’t currently working, and what has or hasn’t worked in the past, especially in a visual way. I’ve been able to keep track of absolutely everything I’ve tried to treat my conditions including medication, herbal supplements, vitamins, diets, different therapists and therapeutic approaches, exercise, lifestyle changes and meditation.

InstantMe also gives you the option to explain “Why” you are experiencing your mood, which has been crucial to me in reflecting on the moments that seemed so difficult at the time.

Another interesting part of that feature is reviewing how my automatic thoughts have changed through my treatment process, which is also really important for someone who suffers from mood swings like I do. I react differently now to difficult life events and can see how I’ve been better able cope with stress over the five years. It’s really nice to see how far I’ve come. 

Will you share a little about your InstantMe artwork?
My work is about the disconnect that occurs with one’s experiences and personal identity over time. I make paintings and drawings using my InstantMe mood logs, and other PatientsLikeMe charts by transferring them onto a physical material such as a wooden panel or paper.

I correlate the text from the InstantMe’s to remember why I was feeling good, bad or neutral and paint symbols to represent that time period, or draw the mood logs themselves into a painted environment or memory in which I was experiencing that mood.

It’s a lot about trying to gain a connection with these fleeting moments and my shifting identity over time and learning to accept them … the process of creating the artwork itself helps me cope with my condition.

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