Monday, March 11, 2013

Women authors a book abt her life w/ ALS but using an iPhone and a small thumb movement

For more than a decade, Susan Spencer-Wendel was a reporter for The Palm Beach Post.For more than a decade, Susan Spencer-Wendel was a reporter for The Palm Beach Post.Living A Life Of Joy 'Until I Say Good-Bye'






Until I Say Goodbye


 


Susan Spencer-Wendel knows how to spend a year.

She left her job as an award-winning criminal courts reporter for The Palm Beach Post and went to the Yukon to see the northern lights. Then to Cyprus, to meet family that she never knew. She and her husband, John, took their children on trips on which her daughter got to try on wedding dresses and Susan got kissed by a dolphin.

She also got a new dog, put a splendid hut in her backyard and wrote a book. It's called Until I Say Good-Bye, and it's a memoir about the year she says she wanted to devote to joy — before she's claimed by ALS, a neuromuscular disorder often referred to as Lou Gehrig's disease.

Susan was diagnosed in 2011, at the age of 44. In an interview conducted a few months ago, she tells NPR's Scott Simon that when she got the news, she felt "equally grateful for a life of perfect health and determined to face it with bravery." And a sense of humor, too: Asked how they broke the news to their children, Susan and John say, "Very carefully! Don't overwhelm them with bad news. Just a little bit at a time." John must help speak for his wife, since muscle damage caused by ALS has affected her speech.

She wrote the book — all 89,000 words of it — on an iPhone, using her right thumb, the only finger she had use of. It took three months, and she compares the task to climbing a mountain or finishing a triathlon. "First and foremost, I wrote the book for my family and friends to have, to jog their memories after I'm gone," she says. "I also realized that, as a storyteller, it's an amazing tale of twinning good and bad fortune. Themes that touch everyday people: friendship, devotion and discovery."

Not everything went as planned during Susan's year of joy. She went with her best friend to see the northern lights — but no lights were to be seen. "As you know, life isn't perfect," she laughs. "The lights did not show. Still had a wonderful time there."
For more than a decade, Susan Spencer-Wendel was a reporter for The Palm Beach Post.

For more than a decade, Susan Spencer-Wendel was a reporter for The Palm Beach Post.

Courtesy of Susan Spencer-Wendel
 


For more than a decade, Susan Spencer-Wendel was a reporter for The Palm Beach Post.
Courtesy of Susan Spencer-Wendel


For John, it's been an understandably difficult time. "Every day I wake up, and I feel sad. That's my first emotion," he says. "And then I roll over, and I look at Susan, and I realize that she's not allowing herself to feel that way, so I can't, and I don't." Susan adds that she has down moments but is "generally doing pretty darn well."
That upbeat attitude is reflected in the book, which is genuinely funny. She says she didn't want to write something maudlin. "If you think it's funny, then we've made it home," she says.
We checked in with Susan this week. Asked how she's doing, she wrote: "My pat answer is, as well as can be expected. My body and voice become weaker every single day, but my mind becomes mightier and more quiet. You do indeed hear more in silence."

Tuesday, March 5, 2013

iPads open up new world for people with disabilities

 

Lindsay Kines / Times Colonist
March 3, 2013
When Rob Baker handed an iPad to a woman at the Garth Homer Society recently, he expected to see her toss the computer aside in disgust.
 
The woman, who has a developmental disability as well as dementia, often resists changes to her daily routine.

So Baker was surprised when he plopped the tablet in front of her and watched as she immediately began doing a puzzle on the touch screen.

“You had never seen this side of her before,” he said. “She was beaming from ear to ear. It was amazing. Nobody expected that kind of reaction.”

Such breakthroughs have become more common among the society’s clients in recent months thanks to Baker’s initiative and the generosity of Butchart Gardens.

It started last year when Baker took his personal iPad to work with him at the society, which provides day programs and employment services to people with developmental disabilities.

Staff were so impressed with how clients responded to the new technology that the society decided to purchase 14 iPads with money that the Garth Homer Foundation receives from the wishing ponds at Butchart Gardens.

The effect was immediate.

People who struggled with fine motor skills or were unable to hold a pen or a paintbrush found they were able to write and draw more easily using the tablets.

“For me, I have issues with keyboards because the buttons are either too small or just awkward to operate,” said Laurie Fairweather, 41. “So with the iPad just having the keyboard as a touch [screen], there’s no right, no wrong, you just do it.

“I’m not great with computers, but I’m good with this.”

Lynne Hibak, 32, said the iPads have allowed her greater access to news and current events as well as a range of games and puzzles that help boost her spirits.

“When I’m down and depressed, that helps me lift myself back up again,” she said.

Others, unable to speak or hear, communicate what they want to eat or do by pointing to a picture on the screen.

“Now that there’s a visual cue, it’s so much easier,” Baker said. “Our breakthroughs tend to be quite small at first and it’s amazing to see. It opens up their world a whole bunch.”

In some cases, the tablets have been used to alleviate the anxiety of clients with autism who rely on routine. Staff create a visual schedule on the iPads with pictures that show what will happen throughout the day.

“It’s a picture of the bus they take. It’s a picture of the car that they get into, and it’s a picture of their face,” Baker said.

“If it means that they get in the van to go out in the community, whereas maybe they wouldn’t if they weren’t primed or they didn’t have that visual component, it’s a big deal.”

One man, in particular, had difficulty leaving the building until staff began using the tablets to show him his schedule for the day, said Colina Titus, director of client services. “Now, I would say 90 per cent of the time, it’s no problem.”

In future, staff hope to use the tablets to better assess how much people understand and what they are capable of doing.

“I think it levels the playing field for a lot of them,” Baker said.

“It gives them access to technology, it allows them to do things they could never do before, and it’s one more step to just being another part of the world.”

lkines@timescolonist.com

Friday, March 1, 2013

Brown unveils novel wireless brain sensor for brain-computer interface

PROVIDENCE, R.I. [Brown University] — A team of neuroengineers based at Brown University has developed a fully implantable and rechargeable wireless brain sensor capable of relaying real-time broadband signals from up to 100 neurons in freely moving subjects. Several copies of the novel low-power device, described in the Journal of Neural Engineering, have been performing well in animal models for more than year, a first in the brain-computer interface field.

Cortex communication Engineers Arto Nurmikko and Ming Yin examine their prototype wireless, broadband neural sensing device. Credit: Fred Field for Brown University
In a significant advance for brain-machine interfaces, engineers at Brown University have developed a novel wireless, broadband, rechargeable, fully implantable brain sensor that has performed well in animal models for more than a year. They describe the result in the Journal of Neural Engineering and at a conference this week.
Cortex communication - Engineers Arto Nurmikko and Ming Yin examine their prototype wireless, broadband neural sensing device.
Brain-computer interfaces could help people with severe paralysis control devices with their thoughts.

Arto Nurmikko, professor of engineering at Brown University who oversaw the device’s invention, is presenting it this week at the 2013 International Workshop on Clinical Brain-Machine Interface Systems in Houston.

“This has features that are somewhat akin to a cell phone, except the conversation that is being sent out is the brain talking wirelessly,” Nurmikko said.

Neuroscientists can use such a device to observe, record, and analyze the signals emitted by scores of neurons in particular parts of the animal model’s brain.

Meanwhile, wired systems using similar implantable sensing electrodes are being investigated in brain-computer interface research to assess the feasibility of people with severe paralysis moving assistive devices like robotic arms or computer cursors by thinking about moving their arms and hands.

This wireless system addresses a major need for the next step in providing a practical brain-computer interface,” said neuroscientist John Donoghue, the Wriston Professor of Neuroscience at Brown University and director of the Brown Institute for Brain Science.
David Borton“The first fully implanted microsystem operated wirelessly for more than 12 months in large animal models — a milestone.”David Borton
“The first fully implanted microsystem operated wirelessly for more than 12 months in large animal models — a milestone.”


Tightly packed technology
In the device, a pill-sized chip of electrodes implanted on the cortex sends signals through uniquely designed electrical connections into the device’s laser-welded, hermetically sealed titanium “can.” The can measures 2.2 inches (56 mm) long, 1.65 inches (42 mm) wide, and 0.35 inches (9 mm) thick. That small volume houses an entire signal processing system: a lithium ion battery, ultralow-power integrated circuits designed at Brown for signal processing and conversion, wireless radio and infrared transmitters, and a copper coil for recharging — a “brain radio.” All the wireless and charging signals pass through an electromagnetically transparent sapphire window.
In all, the device looks like a miniature sardine can with a porthole.

But what the team has packed inside makes it a major advance among brain-machine interfaces, said lead author David Borton, a former Brown graduate student and postdoctoral research associate who is now at Ecole Polytechnique Federale Lausanne in Switzerland.

“What makes the achievement discussed in this paper unique is how it integrated many individual innovations into a complete system with potential for neuroscientific gain greater than the sum of its parts,” Borton said. “Most importantly, we show the first fully implanted microsystem operated wirelessly for more than 12 months in large animal models — a milestone for potential [human] clinical translation.”

The device transmits data at 24 Mbps via 3.2 and 3.8 Ghz microwave frequencies to an external receiver. After a two-hour charge, delivered wirelessly through the scalp via induction, it can operate for more than six hours.

“The device uses less than 100 milliwatts of power, a key figure of merit,” Nurmikko said.
Co-author Ming Yin, a Brown postdoctoral scholar and electrical engineer, said one of the major challenges that the team overcame in building the device was optimizing its performance given the requirements that the implant device be small, low-power and leak-proof, potentially for decades.
“We tried to make the best tradeoff between the critical specifications of the device, such as power consumption, noise performance, wireless bandwidth and operational range,” Yin said. “Another major challenge we encountered was to integrate and assemble all the electronics of the device into a miniaturized package that provides long-term hermeticity (water-proofing) and biocompatibility as well as transparency to the wireless data, power, and on-off switch signals.”

With early contributions by electrical engineer William Patterson at Brown, Yin helped to design the custom chips for converting neural signals into digital data. The conversion has to be done within the device, because brain signals are not produced in the ones and zeros of computer data.

Ample applications

The team worked closely with neurosurgeons to implant the device in three pigs and three rhesus macaque monkeys. The research in these six animals has been helping scientists better observe complex neural signals for as long as 16 months so far. In the new paper, the team shows some of the rich neural signals they have been able to record in the lab. Ultimately this could translate to significant advances that can also inform human neuroscience.

Current wired systems constrain the actions of research subjects, Nurmikko said. The value of wireless transmission is that it frees subjects to move however they intend, allowing them to produce a wider variety of more realistic behaviors. If neuroscientists want to observe the brain signals produced during some running or foraging behaviors, for instance, they can’t use a cabled sensor to study how neural circuits would form those plans for action and execution or strategize in decision making.

In the experiments in the new paper, the device is connected to one array of 100 cortical electrodes, the microscale individual neural listening posts, but the new device design allows for multiple arrays to be connected, Nurmikko said. That would allow scientists to observe ensembles of neurons in multiple related areas of a brain network.

The new wireless device is not approved for use in humans and is not used in clinical trials of brain-computer interfaces. It was designed, however, with that translational motivation.

“This was conceived very much in concert with the larger BrainGate* team, including neurosurgeons and neurologists giving us advice as to what were appropriate strategies for eventual clinical applications,” said Nurmikko, who is also affiliated with the Brown Institute for Brain Science.
Borton is now spearheading the development of a collaboration between EPFL and Brown to use a version of the device to study the role of the motor cortex in an animal model of Parkinson’s disease.
Meanwhile the Brown team is continuing work on advancing the device for even larger amounts of neural data transmission, reducing its size even further, and improving other aspects of the device’s safety and reliability so that it can someday be considered for clinical application in people with movement disabilities.

In addition to Nurmikko, Borton and Yin, the paper was also co-authored by Juan Aceros, an expert in mechanical engineering.

The National Institutes of Health/National Institute of Biomedical Imaging and Bioengineering and National Institute of Neurological Disorders and Stroke (Grant 1R01EB007401-01), with partial support from the National Science Foundation (Grants: 0937848) and the Defense Advanced Research Projects Agency (Contract: N66001-10-C-2010), funded the research.
 
 See more at: http://www.healthcanal.com/brain-nerves/36623-Brown-unveils-novel-wireless-brain-sensor.html#sthash.gjneKHYA.dpuf

Thursday, February 28, 2013

Mobile Device for Augmentative Communication: Insurance Style

Via IPAT ND Assistive Technology Blog

http://ndipat.org/blog/mobile-device-for-augmentative-communication-insurance-style/
 
NovaChat 5 & 7An Android or Apple mobile device with a communication app for people who have difficulty speaking, such as an iPad with Proloquo2Go, is not a new concept anymore. However, insurance paying for a mobile device with this type of software is not as commonplace. A little over a year ago, Saltillo came out with the NovaChat, a Samsung Tablet and/or Media Player enclosed in a hard-shell case with an external speaker and a sophisticated communication app for both children and adults.
The NovaChat comes in a “dedicated” model, which means the device can only be used as a communication device and all of the “tablet” features such as access to games, Hulu+, and internet are locked to the user. When a device is “dedicated”, it is considered appropriate for coverage by some insurances, state Medicaid programs, and Medicare. These particular devices currently fall under HCPCS code E2510 for billing purposes. Once the person has the device in their possession, they can purchase an unlock key from the manufacturer, which is not reimbursable by insurance, and have access to all of the features of the tablet.

The NovaChat comes in three sizes based on Samsung’s 5,”, 7″, and 10″ tablets. The 5″ model can be accessed by the touchscreen, while the 7″ and 10″ models also allow for 1 & 2 switch scanning. Check out these YouTube videos of everything from the clothes dryer test (Don’t try this at home!) to how the device actually works.
From the app to the case, the NovaChats are definitely worth consideration when looking for a communication device.

Wednesday, February 27, 2013

If Someone Can't Use Both Hands, What Kind of Telephone Could They Use?

Via Diabled World http://community.disabled-world.com/184/someone-cant-use-both-hands-what-kind-telephone-could-they-use


Up until recent years, there has been a disappointing lack of functional, affordable hands free telephone systems available for people with physical disabilities. Thankfully, this has now changed and there are an increasing number of options available for people do not have full use of their arms or hands, including phones for quadriplegics.

Home Phones:

1 - The Possum Sero provides a loud speaking, remote control telephone and answering machine with communication aid functions. This hands free phone is packed with many features including communication. You can record phrases onto the phone so that the user can play these when on a call. Making an emergency call is easy, with the touch of a button the help call feature is activated calling contacts of your choosing who can then talk to you via the hands free loud speaker. With caller ID, the voice announcing feature of the Sero! will tell you who's calling. This voice announcing feature extends telling you which button is being activated and the name of a contact in the phone book as you scroll through, which is particularly helpful if using a remote controller.



2 - ABLE-PHONE develops and manufactures Voice Activated Phones and Hands Free Telephones designed to be used by persons with little or no use of their arms and hands such as quadriplegics. All ABLE-PHONE products can be operated without the need to manipulate any type of switch.
http://www.ablephone.com

3 - Hands Free Remote Controlled Speakerphone - This Remote Controlled Speakerphone is perfect for Parkinson's patients, people with quadriplegia, Dupuytren's Contractures of the hand, sever Rheumatoid Arthritis, or other mobility and dexterity disabilities that interfere with their ability to hold or dial a phone. With the option of hands free communication, users are able to independently call and talk on the phone for hours. Ideal for use in the home, office or assistive living facilities.
http://www.elderstore.com/hands-free-remote-controlled-speakerphone.aspx

Cell Phones:

1 - The NoButtonsHeadset is a must have for anyone who is quadriplegic, has Arthritis, ALS, Cerebral Palsy, Upper Extremity disabilities or any other physical disability or handicap that limits the ability for them to push a button. It is the only Truly "Hands-Free" Bluetooth Cell Phone Headset.
http://www.nobuttonsheadset.com

2 - Cell Phones Forum: Provides information on cellphones for people with disabilities.
http://forums.cnet.com/7723-7817_102-102438/easy-to-use-phone-for-disabled-person/

3 - Disabled World - Siri and Disability - Personal Assistant on Apple iPhone Takes Accessibility to New Level
http://www.disabled-world.com/assistivedevices/apps/siri.php

Siri Video Demonstration on Apple iPhone:
http://videos.disabled-world.com/video/516/siri-demonstration-on-apple-iphone
- See more at: http://community.disabled-world.com/184/someone-cant-use-both-hands-what-kind-telephone-could-they-use#sthash.6cLbc59i.dpuf

ALS gives me patience

Nell Hardy writes a montly blog about living with ALS.  This article is about using her communication device to engage in conversation with her friends and family.  Very impactful.
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Via GoErie.com


A group of women met at my house two weekends ago for a silent retreat. They surrendered commitments, cell phones and schedules for six hours. Gingerly, each woman dipped a toe or fingertip in the quiet before immersing themselves in the silence.


I patiently waited for them. I've been speechless for more than a year after amyotrophic lateral sclerosis put me in the ring with pneumonia. I lost and a tracheotomy was performed so I could breathe.


Actually I won because I didn't die, but who's counting?


In the months before the tracheotomy, my words were so garbled that only my sons and a few aides could understand me.


As the muscles in my tongue and throat atrophied, my speech became unintelligible. It wasn't much of a stretch to go from struggling syllables to silence. Sometimes it was even more difficult to no longer laugh or sing.


I tried different speaking valves to coax words out but none worked. Difficulty swallowing, inability to form words and stiffening limbs seemed a trio destined to take me down.


But I'm the runt of the litter. I'm plucky and come from a long line of strong Irish women. I'm determined to savor what my life offers.


Enter secret weapon, stage left. A portable computer called a Dynavox is my main ally in coping with ALS. Attached to my wheelchair, the computer has a screen with letters I choose by blinking at them. Then I select "speak" and words roll forth, framed by a voice of my choosing. Before my voice began changing because of the illness, I spent hours banking my words.


By saying nonsensical phrases such as "a blueberry perched on my pot of ink," the program tried to capture the frills and thrills of a human voice. For me, it fell flat. My words sounded like a different language uttered loudly in a tin can.


A conversation using the Dynavox is, well, different. It simply takes time. On a good day I can eye-type eight words per minute. That's when all variables settle nicely and the Dynavox stars align. Conversing with me involves silence and long pauses. I love the golden layers that quiet spreads between words and phrases.


Speaking through a device presents unique difficulties in our hasty, quick world. I travel at 10 mph in an 80-mph world. Often I finish a sentence only to find the conversation is three subjects ahead.


Others do not like silence; it doesn't fit in our hurried, worried world of instant answers. One friend is a coin jingler. The longer he waits, the deeper his hand plunges into and sifts through a pocketful of change. Others clear their throats, tap toes or actually sidle behind me to read what I type.


Sitting comfortably in silence wasn't always this easy. Before ALS I was a stuffer; I crammed soccer games, child care, horse shows, friendships and self-help into my life.


I wished for a new car, another horse, low-maintenance sons. Rarely did I stop for fear my life would catch up.


But sometimes it takes a crisis to evoke change.


Because of ALS I have downsized, condensed and decluttered my life. I'm finally patient in an impatient world.


NELL HARDY, of Fairview, writes monthly about her battle with ALS, also known as Lou Gehrig's disease (nhardy1@mydvox.com).

http://www.goerie.com/article/20130227/OPINION08/302279994/Nell-Hardy%3A-ALS-gives-me-patience

Tuesday, February 26, 2013

10th BCI2000 Workshop, Wadsworth's Brain Computer Interface Update meeting

 


Dates: June 2-3, 2013

Maximum Number of Participants: 42

BCI2000 is a general-purpose software platform for brain-computer interface (BCI) research and other neurotechnology applications that depend on real-time data acquisition, processing, and feedback (www.bci2000.org). BCI2000 has been actively developed, maintained and supported since the project's inception in2000. BCI2000 has been acquired by more than 2700 users around the world and has become the standard software in its field of research. Its use is described in several journal papers, book chapters, a dedicated book published by Springer, in hundreds of pages on the BCI2000 wiki, and in thousands of posts on the BCI2000 bulletin board. In addition to its use for research purposes, BCI2000 has also provided the basis for important emerging clinical applications such as real-time functional mapping or clinical monitoring in intensive care units.

The 10th BCI2000 workshop will be held at the Asilomar Conference Center at Pacific Grove, California, from June 2-3, 2013, immediately prior to the Fifth International BCI Meeting. At the workshop, experts in brain-computer interfacing and BCI2000 will give lectures on the relevant technical aspects of the BCI2000 system and provide hands‐on practical tutorials. These tutorials include real-time implementation of BCIs based on sensorimotor rhythms and P300 evoked potentials. The workshop also include exercises, in which participants can learn how to build and configure BCI2000 with their own signal processing methods, applications, or assistive devices. Seven BCI systems will be available throughout the day, and participants will operate them under supervision of tutors.

We look forward to a very exciting and productive workshop, and we hope that you will be able to join us. If you are planning to attend this workshop, please complete the registration form BCI2000 Registration Form. If you have any question, do not hesitate to contact cmpotes@gmail.com with a subject line of "10th BCI2000 Workshop."



Thanks,


--
Cristhian Mauricio Potes
Doctoral Candidate, Electrical and Computer Eng
Research Assistent
University of Texas at El Paso
Department of Health of New York State, Wadsworth Center
Albany Medical Center