98 posts tagged “ALS”

Communicating with ALS: From devices to voice banking

Posted 9 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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Shout out to The Golden Girls: Shows and movies that “get” chronic illness

Posted 9 months ago by

‘Tis the season for binge-watching — but the media often flops in its portrayal of people with health conditions. So we’ve gathered patient perspectives on Hollywood depictions of illness and who’s gotten it right (thanks, Bea Arthur).

When doctors doubted Dorothy

A writer for The Mighty who has multiple health condition recently praised The Golden Girls for it’s portrayal of main character Dorothy navigating the healthcare system with a chronic condition. Over the course of a two-part episode (called “Sick and Tired”), Dorothy (played by Bea Arthur) starts feeling constant exhaustion and hops around to different doctors who don’t believe she has a real ailment.

“Maybe I am crazy — nobody believes me,” Dorothy laments to Rose (Betty White) after multiple appointments.

“Dorothy, you are not crazy, honey, you’re sick,” Rose replies. (Thank you for being a friend, Rose.)

Ultimately, Dorothy is relieved when a specialist finally diagnoses her with chronic fatigue syndrome (CFS). The show was ahead of it’s time in building credibility around CFS, which is just now gaining recognition as a serious longterm condition that shares many characteristics with some autoimmune conditions. Golden Girls creator Susan Harris based the episodes on her own experiences with CFS and doctors who didn’t understand the condition in the 1980s.

Other shows worthy of some applause

While no show does a perfect job, additional shows that The Mighty includes on a list of 7 TV Shows That Got Chronic Illness (Mostly) Right include:

  • The West Wing — Writers consulted with the National Multiple Sclerosis Society to depict President Josiah Bartlett (Martin Sheen) and his relapsing-remitting MS. Some have argued the show didn’t capture all the symptoms and severity of the condition, but it raised awareness of MS.
  • Brothers & Sisters — A young character named Paige (Kerris Dorsey) is diagnosed with type 1 diabetes after experiencing symptoms that real-world patients may experience, such as increased thirst and frequent urination. People with type 1 diabetes say the media often gets it wrong, so it’s refreshing that this show got it right.
  • The Good Wife — Before playing a person with Parkinson’s disease (PD) on The Michael J. Fox Show (2013-2014), Fox (who has PD in real life) played a character with a neurological disorder called tardive dyskinesia on The Good Wife in 2010. The show gets props for featuring an actor with an actual health condition, playing a character who’s an aggressive attorney and not “just” a patient.
  • Grey’s Anatomy — In general, hospital-based shows are known more for their romantic plot lines than their medical accuracy. But a 2016 episode called “Falling Slowly” captured some of what it’s like to get a rare diagnosis known as Ehlers-Danlos syndrome (a group of disorders affecting connective tissues in the body).

Speaking of Grey’s Anatomy, one of its stars, Kate Walsh, who played Dr. Addison Montgomery from 2005-2012, recently opened up about being a patient in real life. Walsh revealed that she had surgery in 2015 to remove a lemon-size brain tumor, which turned out to be a non-cancerous meningioma.

“I played a real badass on TV, but when it comes to being a patient, it’s such a vulnerable experience,” Walsh said.

More and more shows and movies are also depicting mental illness — and doing a better job of it than before. For example, Stranger Things recently got good reviews for raising awareness of some aspects of post-traumatic stress disorder (PTSD). The media’s increasing focus on mental illness — if done carefully and correctly — can be a positive thing overall, according to the American Psychiatric Association.

On PatientsLikeMe

Members have shared a lot about shows and movies portraying chronic conditions, mental illness and more.

In the Mental Health community, some members have given “thumbs up” for some TV shows, like A&E’s docuseries Obsessed and Hulu’s show Mental. “I think Obsessed is pretty good. It doesn’t seem to ridicule, exploit, or put down the patients like some shows I’ve seen on the topic. Many shows I’ve seen on OCD seem to portray the people with the disorder as sideshow attractions. I like that Obsessed keeps it on a more human level and is also focused on treatment,” one member said.

But members also recall how the media has propelled stereotypes in the past, such as the acclaimed 1975 movie One Flew Over the Cuckoo’s Nest associating mental illness with violent crime. “I wish the stigma didn’t exist, but people unfortunately assume some pretty bad things based on what they have seen on tv,” a member noted, mentioning that film.

Members with ALS expressed frustration with the depiction of people diagnosed with ALS on TV shows (including ScrubsThree Rivers and Law and Order), as well as mixed reviews of the 2014 movie The Theory of Everything. But some members did like the film. “It’s a touching film that does a great job in humanizing Stephen Hawking. Although some have criticized the lack of science in the film, I think its purpose was to look more closely at his life and his relationship with his wife, Jane, which is fascinating and complex,” one member said.

Those living with MS have said that some shows (like Private Practice) have been so-so at portraying the condition — but they’re no West Wing. One member’s take? “West Wing did an excellent job of portraying ms. It showed that even the President of the US could run the country while in the middle of a relapse… it didn’t interfere with his ability to do his job.”

In your opinion, which shows and movies have done a good or bad job of portraying health conditions? Join PatientsLikeMe today to chat about what to watch (or avoid!).

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