Banking on your voice: Machine stores speech for patient's future use

Read more here: http://www.sunherald.com/2013/08/07/4854978/banking-on-your-voice-machine.html#storylink=cpy

http://www.sunherald.com/2013/08/07/4854978/banking-on-your-voice-machine.html
By ELIZABETH DE ARMAS — The Miami Herald
                

MIAMI — Carole Shearn isn't quite sure when she will lose the ability to speak, but she is sure of one thing: Her voice will still be heard, even when the words can no longer be spoken from her lips.
The 70-year-old West Palm Beach, Fla., resident was diagnosed with ALS, also known as Lou Gehrig's disease, last October. Her form of ALS weakens the throat muscles first.

The progressive disease has no cure, but at the University of Miami Miller School of Medicine's Department of Otolaryngology, Shearn is the first patient to take part in voice banking - a program where patients who will eventually lose their voice due to diseases such as Parkinson's, ALS and cancer - can record key words, phrases and personalized messages to communicate when speaking is no longer an option.

Shearn uses Tobii Assistive Technology, a speech-generating device, which stores her recordings into categories. She can then use a mouse, touch the screen or even use her eyes to retrieve the sound files.

In case of an emergency, Shearn has even programmed a message saying "get help immediately" and "call 911." Tobii, which is compatible with Bluetooth technology, will call for her.
"Truthfully, I was so amazed when I found out about the Tobii," she said. "It makes me feel good that I can personalize my messages to whomever. It is my lifeline."

ALS is a neurodegenerative disease that attacks the motor neurons. As the disease progresses, these neurons begin to degenerate and stop sending messages to muscles. Eventually, individuals diagnosed with the disease lose the ability to move their legs, arms and body.

According to the National Institute of Neurological Disorders and Stroke, 20,000 to 30,000 people are living with ALS in the United States. The average lifespan for a person with ALS is three to five years.

Because ALS patients lose strength and movement in their limbs, Tobii has a built-in eye tracker. Shearn can sit in front of the device - without moving any part of her body but her eyes - and still communicate effectively.

Jocelyn Odlum, a speech pathologist at the University of Miami, met Shearn at an ALS support group in West Palm Beach and then began seeing her at the clinic. After evaluating Shearn, she got her started on voice banking. Shearn has been recording her voice every day for the past two months.
"Carole is an inspiration," Odlum said. "She took this disease and is doing everything she possibly can to be prepared."

Odlum says that once individuals are diagnosed with ALS, they should see a speech pathologist immediately so they can be introduced to these devices and helped. "Unfortunately by the time people come to see me they have no voice," she said.

Shearn has recorded basic phrases such as "Hello. My name is Carole," and "How was work?" But, she also has recorded some of her other favorite phrases: "What's up buttercup?," "What's new, super glue?," and "You snooze. You lose."

When Shearn was initially diagnosed, she had no idea what ALS was. She also didn't know that the disease had no cure. "That was very hard to hear," she said.

"I had tears in my eyes of course and I asked how long I would have to live and my doctor said he didn't know, three to five years, so we left the office on that," she said.
Shearn's daughter, Jennifer Wagner, had been suspicious of early symptoms she had been noticing: slurred speech and choking spells, even when she wasn't eating. She researched her mother's symptoms and learned about ALS.

"It was very daunting and difficult to read," she said. "I had a pretty good idea of what the disease was and what it was going to entail, and I didn't want my mom to go through that."

Although Shearn can still drive and walk without any assistance, Wagner drives her mother from West Palm Beach to the university. She also started an open Facebook page called Carole's Crusade, where people can become more aware about the disease and follow her mother's progression.

"I know that I cannot cure the disease so my main goal is to bring attention to it," she said.

For Shearn, keeping a positive mindset has helped her cope with the disease, but she acknowledges she is not as hopeful and optimistic as she was eight months ago because she notices herself "getting a little worse."

"I was certain I was going to live past 90," she said. "I would still like to." But if she doesn't, Shearn says she feels she has done everything she has wanted to do - traveled to Rome, Alaska, Paris, England, Italy, Spain and the tip of Africa, been surrounded by good people, and had a successful 36-year teaching career.

"My life has always been about people so I don't crave a lot of outside influence," she said. "Our family is small, but we are tight. That has always been everything to me. I feel my life has been blessed."

Read more here: http://www.sunherald.com/2013/08/07/4854978/banking-on-your-voice-machine.html#storylink=cpy

Pupil response may help brain-damaged patients communicate

Via: Los Angeles Times
http://www.latimes.com/news/science/la-sci-retina-20130806,0,4412651.story
by Melissa Pandika

August 5, 2013, 8:02 p.m.

 

A study suggests that, even if someone can't blink at will, their eyes can indicate a response to a question.

People with brain damage that has left them mute and motionless may be able to communicate with a system that measures the size of their pupils, a new study has found.

Individuals suffering from "locked-in syndrome" have lost motor control but remain aware and alert. The rare condition usually results when damage occurs to the brainstem, which controls motor function. Stroke, traumatic brain injury and amyotrophic lateral sclerosis (also known as Lou Gehrig's disease) can cause locked-in syndrome.

Many locked-in syndrome patients communicate with an alphabet chart, blinking to indicate their choices as a caretaker points to each letter. Others use devices that measure eye movement patterns representing "yes" or "no." Completely locked-in patients who aren't able to move their eyes at will may be able to use systems that translate brain activity into speech, although these often require surgical implantation and special training.

A new system called the EyeSeeCam measures changes in pupil size that happen involuntarily — even in people who lack motor control — and decodes them into yes or no responses, potentially offering an easier alternative for locked-in syndrome patients, including completely locked-in individuals.

In the 1960s, researchers discovered that pupil size can be used to measure mental effort: The bigger a person's pupils, the harder his or her brain is working. Neuroscientists used these findings to develop the EyeSeeCam, which takes advantage of how people's pupils dilate when they try to solve math problems.

Since this happens automatically, patients don't need to be trained to use the EyeSeeCam, said Wolfgang Einhauser, a neurophysicist at Philipp University of Marburg in Germany who helped develop the device. It's also relatively inexpensive, consisting of just a camera and laptop.

In a trial described Monday in the journal Current Biology, Einhauser and his colleagues asked patients 15 simple questions, such as "Are you 20 years old?" After each question, the computer presented the patient with yes or no options while showing a math problem onscreen.
Patients solved only the problem associated with their response, and the mental effort caused their pupils to dilate. An infrared camera mounted to a headpiece measured their pupil size over time and sent the information to a laptop. A software program immediately translated the measurements into responses based on when they peaked.

When the researchers tested the EyeSeeCam on six healthy individuals, it decoded their pupil sizes into accurate answers almost every time. The researchers saw similar results in three out of seven locked-in syndrome patients, almost all of whom could manage small head movements. With some slight adjustments, it correctly translated the pupil dilations of two additional patients more than 70% of the time.

"We found that quite remarkable," Einhauser said.

Only one out of four patients with more severe locked-in syndrome — marked by more widespread brain damage — finished the trial, and his answers were no more accurate than guessing.
The researchers also tested the EyeSeeCam on a minimally conscious patient with severely impaired cognitive ability. Although he couldn't answer the questions independently, he was able to solve math problems if the researchers pointed at them. The system translated these responses with more than 80% accuracy, suggesting that it could also serve as a diagnostic tool to assess a patient's state of consciousness, the researchers wrote.

Within the next two years, the researchers hope to finish fine-tuning the EyeSeeCam so that it works better for severe locked-in syndrome cases, Einhauser said. They also plan to make the device less cumbersome. It will eventually resemble a small webcam that can be hooked up to a laptop.

Although completely locked-in patients stand to benefit most from the EyeSeeCam, the trial participants still had control over their eye movements, said Niels Birbaumer, a neurophysicist at the University of Tuebingen in Germany who was not involved in the study. As a result, "we have no idea whether pupil size" accurately reflects yes or no responses, he said.

Mark Delargy, a physician at Ireland's National Rehabilitation Hospital, agreed. Although the study controlled for lighting changes and other environmental factors that can affect pupil size, internal variables, such as emotional state, are more difficult to control. Anxiety and pain can cause the pupils to dilate, for example.

But identifying these emotions in locked-in patients is tricky. "They won't tell you any new information," said Delargy, who was not part of the study. "You have to devise a question to enable them to tell you."

The EyeSeeCam's success in the minimally conscious participant has made the researchers confident that pupil dilation can serve as a means of communication, Einhauser said. Now that they've "provided the proof of principle," testing the system on completely locked-in patients is "definitely on the agenda," he said.

Even if pupil size does accurately reflect yes or no responses, the study tested only the EyeSeeCam, so it's undetermined whether it offers an advantage over existing systems, Birbaumer said.
Still, the device "has potential," Delargy said. "This is one of the greatest hopes for rehabilitation of locked-in patients and for the opportunity to give a voice to people who have lost it."
melissa.pandika@latimes.com

Revolutionary new neck support collars for patients with Motor Neuron Disease

    

A revolutionary new device to replace ‘hated’ neck support collars for Motor Neurone Disease (MND) patients has been developed.

Imagine being unable to support your own head, unable to speak properly or eat without assistance. That is the reality for patients with MND; enabling the continuation of the most basic aspects of living such as being able to maintain eye contact with other people can dramatically improve quality of life.

From left to right, Heath Reed, Principal Industrial Designer on the Head-Up Project, Jane Evans, Regional Care Advisor for the Motor Neurone Disease Association, Moya Briggs and her husband John Briggs - examining the new collar at the recent Design4Health Exhibition at Sheffield Hallam University.

Moya Briggs, 67, who was diagnosed with the less aggressive form of MND four years ago, chose to take part in a unique patient-led project, called ‘Head-Up’ to create a more suitable collar for patients with MND.

Moya said: “I hate the current collar I have to wear, absolutely hate it. When I’m wearing it I feel like an Egyptian mummy, all choked around my neck. For it to give me enough support I’ve got to have it really tight and when it’s tight I feel like I’m choking in it. It makes me feel as if I’m only partly communicating with the world.

“I hate the look of my current collar too and I cover it with a scarf. The fact that this new collar is inconspicuous and comfortable will make all the difference.”

The award-winning ‘Head-Up’ project is funded by the National Institute for Health Research (NIHR) Invention for Innovation (i4i) Programme. It is a collaboration between Sheffield Teaching Hospitals NHS Foundation Trust, the University of Sheffield and Sheffield Hallam University. The team was brought together and provided with early funding by the NIHR Devices for Dignity Healthcare Technology Co-operative (D4D HTC).

The collar came from a complete rethinking of existing collars as it sits low on the patient’s neck and offers support along the contours of the neck muscles, making it much easier for patients to carry out everyday tasks such as eating and communicating. The new collar will be undergoing a comprehensive evaluation later this year.

The involvement of patients and the public in research has been strongly promoted by NIHR, and is at the heart of D4D’s culture.  Moya and other MND patients have played an extensive part in the design workshops for the new collar.

She said: “The whole device is very inconspicuous and provides so much more support. The snood itself feels like a second skin. It was wonderful for me because the muscles at the back of my neck usually feel the strain but I could instantly feel the relief in my neck.”

“I think it’s going to be a great relief to a lot of people. Every time I go out I will be wearing it and I need it for when I’m on the computer or if I’ve got to sit at the table or do anything for a long period of time.”

D4D, which is hosted by Sheffield Teaching Hospital NHS Foundation Trust, brought together an extensive multidisciplinary team including designers and engineers from Sheffield Hallam University’s Lab4Living, clinicians, clinical neurologists, MND nurse specialists, occupational therapists, physiotherapists and medical engineering experts from the University of Sheffield and Sheffield Teaching Hospitals.

This group was supported by MND patients and carers through the Motor Neurone Disease Association. D4D is also leading the regulatory compliance, evaluation and commercialisation work to put the collar as quickly and effectively as possible into the hands of patients.

Moya said: “I think the role that initiatives such as the NIHR D4D HTC play is very important. They can add an extra dimension – bringing forward products which integrate modern materials and help make people feel more part of the community and less obviously disabled.”

The project was led by Dr Christopher McDermott, who is a Consultant Neurologist and a Co-Director at the Sheffield MND care centre and also supported by the Motor Neurone Disease Association (MNDA).

Source: http://www.sth.nhs.uk/

Write to Talk Apps

Via http://community.advanceweb.com/blogs/sp_6/archive/2013/07/23/write-to-talk.aspx

 

Published July 23, 2013 11:31 AM by Megan Sutton

 

Handwriting comes more naturally than typing for many adults and is likely to be better preserved after neurological injury or disease. For those who have lost their ability to speak, a voice-output app may be the best way to be heard. However, nearly all voice-output communication apps require the user to type in a message, leaving those without keyboarding skills in the lurch. Two AAC apps offer writers a chance to hear their words by converting handwriting to text, then text to speech.

HandySpeech (universal iOS app for $29.99) excels at recognizing print, script and mixed case writing and outputting it in high-quality artificial speech. Voices can be male or female in US or UK English accents; 11 other languages are available for in-app purchase of $2.99 each. The app requires an Internet connection (wifi or 3G) for speech output, though if none is available, the user can work around the problem by selecting the text and making use of the device's text-to-speech function.

 
There are many settings to help the app better recognize handwriting, including the ability to exclude letter shapes that are rarely or never used. Users can type directly into the app if desired, as well as paste text from other apps. A great feature of this relatively low-cost AAC app is the ability to store phrases for quick communication.  Unfortunately, the only way to save phrases is to type them in through the settings, excluding the handwriting user from the process of storing messages.
 
Handwriting-to-speech is one of many features included in the full-service AAC app Predictable (universal iOS app for $159.99). While Predictable lacks the variety of settings to improve handwriting recognition, it offers the ability to use the voice when the device is not connected to the Internet. You can also easily output your message to email, Facebook, Twitter and SMS, or add it to the stored phrases list. Unfortunately, this app's useful word prediction feature does not work when using handwriting input. It is also difficult to insert spaces between words when combining handwritten phrases. 
For an app that turns handwriting to text without the voice output, please look back at my previous post on MyScript Memo.

posted by Megan Sutton

Graduate Student's Proposal for Google Glass is Accepted by Google

A doctoral candidate in Penn State’s College of Education is working to make a new technology into a tool to assist people with disabilities. Sam Sennott applied to the recent Google Glass project, which was offering Google’s hands-free, wearable computer to researchers and consumers as a part of the company’s research and development.

Sennott said he was eager to apply for the new technology when he heard about it in 2012. He submitted his 50-word entry in February, and Google contacted him about a month later to invite him to join the program. He said he anticipates receiving his Glass this summer.

“The overarching goal is to use Google Glass as an accessibility tool for people with a wide range of physical, communication and cognitive disabilities,” said Sennott.

There are three primary areas that Sennott identifies as possibilities for this project.

“First, will be helping people who struggle to speak by working with Glass as an augmentative communication tool,” said Sennott. “Second, will be to develop a range of assistive technology solutions. Third, will be looking at how parents, teachers and other related service providers can use Glass to enhance their work with students.”

Hacking things together to make them work is what special educators do on a daily basis, according to Sennott, so coming up with a new way to use Glass was natural.

“It is in my DNA to make solutions work out of whatever materials are available and to seek out new tools to get the job done for the students and families we serve,” said Sennott. “For me, all it takes is being with the individuals I serve and the ideas start flowing. I am committed to harnessing the power of innovative new consumer technologies to make a difference.”

This is not the first time Sennott has adapted a new technology to be used as an accessibility tool. He was able to collaborate on creating a popular technology for iPhone, iPod touch and iPad.
“I co-created the original Proloquo2Go,” said Sennott, “the iOS software that helps people who have difficulty speaking due to disabilities such as autism, cerebral palsy and developmental disabilities.”
Sennott anticipates that the assistive technology community will support this project.

“The assistive technology community is incredible,” said Sennott. “They mobilize quickly and are really generous with lending a hand to share about important new developments in the field.”
Sennott, who will be joining the faculty of Portland State University this fall, said he plans on using Google Glass as a part of his research in his new position, but he is cautious about his predictions for this project.

“My hope is that it provides tools that are powerful, discrete and always nearby,” said Sennott.

Forced Intimacy: When Illness Makes Us Let Down Our Guards

With an invading disease come other invasions, of privacy and physical space: Holly Ladd on ALS and intimacy out of necessity                                                                           

                                    

 

My name is Holly Ladd, and I am a 58-year-old woman with ALS (“Lou Gehrig’s Disease”). I was diagnosed in August 2012, after five months of increasing difficulty walking. Ten months later, I live my life from a wheelchair, no longer able to walk, and I am quickly losing use of my arms and hands. My voice is soft and muffled, and will be useless in a few months.

In December 2012, I left my 30-year career in public health and international development, in which I traveled alone to Africa and South East Asia. Now, I can’t travel alone from my bedroom to the bathroom.

Having the support of Joan, my beloved partner of 23 years; my beautifully spirited son, Michael, whom I joyfully watched graduate from college this month; many close friends; as well as excellent medical care and a home health aide seven days a week, I am one of the “lucky” ALS patients. But like all of us with this devastating disease, I am frightened and furious. It has given me much to think about.

As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

 

Lately, I have been thinking about intimacy. Not sexual or romantic intimacy, but the full range of physical, emotional and — dare I say — spiritual intimacy. We undress in front of our sexual partners, our physicians and maybe strangers in a locker room, but most of us would not consider having someone else routinely remove our clothes. A few special friends may know some of our fears, our secrets and maybe our prayers.

But generally we guard these parts of ourselves well — some of us very well indeed — with what I like to think of as our personal sentries. These sentries are the tricks, diversions, dodges and distractions we use to keep the world at bay. I imagine mine dressed rather like the Swiss guys in striped pantaloons who guard the pope.

Among the many choices we have when suddenly sick is whether or not to fire our sentries. Don’t we need them to guard our vulnerable selves even more when we are ill? Isn’t this the time to circle wagons? And how do you know whom to let past the palace guards?

So far, I have told my sentries to stand down; I have yet to fire them. They are milling about in the corner in their purple and gold stripes, helmets off, with an occasional cigarette passing between them. I might be able to fire them someday, but for now they still keep a watchful eye and spring into action from time to time, like a dog energetically greeting the postal carrier. Even so, while they have been relaxing, greater intimacy has been happening — by choice and by necessity.

By necessity, there are a whole lot more people in my life now. Most notable are the four women who come at different times and frequencies to care for my daily physical needs. These people bathe me, brush my teeth, wipe me, feed me, get me in and out of bed, and dress and undress me. As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

Some of those who care for me have such a well-worn familiarity with this disease that they anticipate both my physical and spiritual needs before I can imagine going there. They prepare me, and they prepare the path in front of me.

There are medical providers who know the science and my body — how it is collapsing. Two or three have also seen some of how my heart has broken. And my psychologist helps sort out the feelings I have about impending death from those that were born in ancient losses. With a couple of these, I discuss both heart and health, and they will be trusted with making the final call.

I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.

 

What sets these relationships apart is their inequality. They are one-way caring. No matter if I wished it otherwise they are not friends, and I do not share in the details of their lives. I do not question the authenticity of their caring, nor do I think them impervious to my not-so-subtle attempts to ensure that they like me. No, these intimate strangers are exactly as they need to be in order to be ready to care for what comes next. But with some I do wish we had met in a different way at a different time.
Lines blur, as friendships now include care-taking in addition to all the normal expectations I have of those inside the palace walls. Seeing a group of out-of-town pals once a month helps to mark the changes, and I noticed last weekend how dependent I was on them and how much more intimate physical care they had to do for me. I also noticed how much work it has become for me to actively remain in a conversation. Among friends, I have had to send the sentries out for coffee while membership in the “bare butt club” (those who take me to the bathroom) grows, and dinner conversation includes a discussion of the pros and cons of going on a ventilator. “Joshua fought the battle of Jericho, and the walls came a tumbling down.”

As things become more difficult, I know, I will need to let more people past my resting palace guards. It is a balance, and I hope I will still be able to decide how much to share, and with whom. Already, I think about who can accompany me to appointments based not just on schedules and interests, but on who knows me well enough to speak for me as my voice fails — who knows my fears, as well as my comforts; who knows me well enough to persuade the sentries to let down their guard.
Via 90.0 WBUR Boston's NPR Station
http://cognoscenti.wbur.org/2013/06/28/a-l-s-disease-holly-ladd#.Uc1204jF_fc.twitter
 

ALS and Social Security Benefits

Guest blogger: Molly Clarke from Social Security Disability Help

 

326 A Street, Suite 1A

Boston, MA 02210

857.366.7629 – Direct

617.800.0089 – Office

ALS and Social Security Disability Benefits

Amyotrophic lateral sclerosis (ALS), commonly referred to as Lou Gehrig’s disease, can significantly weaken the body. When individuals with ALS begin to experience severe symptoms like muscle cramps, uncontrollable twitching, difficulty speaking, and trouble breathing and swallowing, it is understandable that they may no longer be able to work and earn a living. The resulting loss of income and medical insurance can cause a significant financial burden.

 

Fortunately, the Social Security Administration (SSA) offers financial assistance in the form of Social Security Disability benefits to individuals with ALS who cannot work.  The following article will provide you with a brief overview of the Social Security Disability benefit program and will prepare you to begin the application process.

 

Social Security Disability Technical Requirements

To even be considered for Social Security Disability benefits, applicants must first meet the SSA’s definition of disability. This includes meeting the following criteria:

 

·         You cannot do the work you were once able to;

·         You cannot adjust to other types of work; and

·         Your condition must be expected to last at least one year or result in death.

 

The SSA governs two separate programs that offer Social Security Disability benefits—SSDI and SSI. Each of these programs has its own set of technical eligibility requirements that applicants must meet in addition to meeting the SSA’s definition of disability.

 

SSDI, or Social Security Disability Insurance, offers financial assistance to disabled workers. This program is funded by the income taxes that workers all over the country pay into the system. Eligibility for SSDI is based on an applicant’s work history. The SSA assigns a certain amount of “work credits” to each quarter that an individual works and pays taxes. To qualify, an applicant must have earned enough work credits throughout his career. Learn more about SSDI and work credits here: http://www.disability-benefits-help.org/ssdi/qualify-for-ssdi.

 

The second program that offers disability benefits is called Supplemental Security Income (SSI). Eligibility for this program is based on an applicant’s financial standing rather than their work history. To qualify, applicants must fall under specific financial limitations and meet the SSA’s definition of disability. This program is ideal for disabled individuals who may not have the work credits to qualify for SSDI. Learn more about qualifying for SSI, here: http://www.disability-benefits-help.org/ssi/qualify-for-ssi.

 

It is important to note that some applicants may qualify for both SSI and SSDI. Also remember that these programs do not take the place of health insurance. However, individuals who qualify for SSDI qualify for Medicare after a two year waiting period.  Individuals who qualify for SSI automatically qualify for Medicaid. For more information about Medicare and Medicaid, visit this page: http://www.disability-benefits-help.org/faq/medicare-vs-medicaid.

 

Compassionate Allowances Program

Typically, it can take months for an initial application to be processed. The SSA recognizes that individuals with severely disabling conditions cannot be expected to wait the standard processing times. For this reason, the SSA started the Compassionate Allowances Program. Through this program, applicants with serious disabilities can be approved in as little as ten days.

 

Fortunately, ALS does qualify for Compassionate Allowance processing. However, because there is not a definitive medical exam to determine whether or not an individual has ALS, it is imperative that you provide medical documentation to fully support your claim

 

This medical documentation should include a history of your symptoms and treatments, neurological exams and reports, as well as test results that rule out other possible conditions. You should also include a statement from your doctor describing your condition and how it affects your ability to work.

 

Please note that you do not have to fill out additional forms to qualify for the Compassionate Allowances program. The SSA will determine whether or not your condition qualifies and will expedite your claim accordingly.

 

Applying for Social Security Disability Assistance When Living With ALS

Once you decide to apply for Social Security Disability benefits, you can do so online at the SSA’s website or in person at your local Social Security office.  Along with the necessary medical documentation you should also have financial and work related records as well.

 

The Social Security Disability application process can be long and complicated. Often times, applicants find that their initial applications are denied. If your application is denied, do not panic. You are allowed to appeal this decision. Do not give up. Once you are awarded benefits, you can focus on your health rather than your financial difficulty.

 

For more information about Social Security Disability benefits, visit Social Security Disability Help or contact Molly Clarke at mac@ssd-help.org.