Alisa Brownlee, ATP, CAPS blog offers recent articles and web information on ALS, assistive technology--augmentative alternative communication (AAC), computer access, and other electronic devices that can impact and improve the quality of life for people with ALS.
Email--abrownlee@alsa-national.org.
Any views or opinions presented on this blog are solely those of the author and do not necessarily represent those of the ALS Association.
The world that Mark Lonsborough knew was turned upside down when he was diagnosed with motor neurone disease. Stuart Greer spoke to him about his battle and how singing is helping to keep him alive
Mark Lonsborough with his wife Lindsey
Mark Lonsborough was an electrical engineer, amateur musician and father of two when he was diagnosed with motor neurone disease in November 2001.
The devastating condition destroys the nerves that power the muscles and there is no cure.
Mark, from Poynton, was told the condition would lead to paralysis and death, and this would happen within five years.
In an instant his life, as he knew it, changed.
Mark, 56 said: “I had done some research on the condition but that doesn’t prepare you for the shock of hearing it. That was hard to take. How do you deal with being told you will be dead in five years?” Mark Lonsborough with his wife Lindsey
The symptoms started after a minor surgical procedure. After a three-month recovery he expected some muscle wastage during what he experienced was severe in his hands and arms.
He said: “It started in my arms, and I felt the effect at work and playing flute and piccolo for the Royal British Legion Poynton Band. I suddenly found one of my forearms which would not straighten making it impossible to play. Then it began affecting my fingers.”
He was referred to a neurologist and after a year of scans and tests the cause of his failing health was discovered.
Over the next two years, Mark’s ability to control his limbs got gradually worse until he was unable perform simple tasks like dressing and washing.
By 2004 Mark had lost full use of his hands and arms. He was receiving full-time care.
Mark was not willing to relent to the disease. He volunteered to participate in clinical trials in a bid to prolong his life.
By 2009 Mark had surpassed the doctors’ prognosis, but his lungs had shrunk to 18 per cent of their normal capacity.
Mark begun using a machine to help him clear his lungs. Combined with music therapy, his lung capacity has improved, meaning that singing is quite literally saving his life.
Mark said: “Singing is the best exercise for my lung. I sing Lionel Richie and The Kinks. The results have been remarkable results. My lung capacity is now the same level as it was five years ago.
“I am not a betting man but there is a chance that if I make any further improvement I can live those five years all over again.” Mark Lonsborough and wife Lindsey on their wedding day in 1009
Technology has enabled Mark to retain his independence. With his right foot he can control a tracker device linked to all the electronic devices in the house including using his computer.
Medical and technological advances aside, it is love that has been Mark’s most compelling crutch through his battle with his condition.
Lindsey, 46, met Mark when she began working as his carer and was swiftly won over by his sense of humour and personality. Mark unashamedly confesses, much to Lindsey’s embarrassment, ‘She gave me a reason to live’.
The couple, who married in 2009, live together on Dickens Lane with her sons, Ben, 17, and Sam, 16.
They try and have as normal life as Mark’s condition can afford. Lindsey said: “We go to the shops, visit friends and book holidays. While it is a massive undertaking with all the equipment we have to move around we’re determined to have a normal life.
“The way Mark has coped with his condition is miraculous. He has learnt to live with a frustration few could cope with.
“Many people from Mark’s old life have faded away, which is sad, but so many have stuck by him and that helps him.”
The biggest bugbear of Mark’s life is the public’s perception of his condition.
Lindsey explained: “The main thing we have to contend with is people staring at him, talking to me and ignoring Mark, or worse still, talking to him like he is stupid. So many people don’t realise that Mark is still firing on all cylinders up there, his mind is as strong as ever, it’s only his body that struggles. That’s what makes this disease so cruel.”
After years of enduring this misguided perception, Mark and Lindsey have decided to go public with his plight.
They are supporting a global screening of the film ‘I Am Breathing’, which documents the last year of young architect Neil Platt’s life as he succumbs to motor neurone disease.
Lindsey said: “We recognised the courage it must have taken for Neil to make that film. We realised that we wanted to do something to raise awareness of the disease, Mark’s situation and all those other people battling it.”
Now, almost 12 years on from his diagnosis, Mark is determined to live another 12 if he can.
He said: “The way I see life is that not everyone is lucky enough to make it to last orders. They might get hit by a bus or have a heart attack. But when you do hear last orders you have two options: to go on home or get another round of drinks in. I’m in the second category. I have never given up.”
‘I Am Breathing’ will be shown at the Civic Hall, Poynton, on June 21 at 7pm. Entry costs £3, and there will be a raffle and a cake sale. For more information call 0789 1062760 or email m.lonsborough@ntlworld.com.
This image shows the changes that took place in the brain for all patients participating in the study using a brain-computer interface. Changes in activity were distributed widely throughout the brain. (credit: Jeremiah Wander, UW)
Small electrodes placed on or inside the brain allow patients to interact with computers or control robotic limbs simply by thinking about how to execute those actions. This technology could improve communication and daily life for a person who is paralyzed or has lost the ability to speak from a stroke or neurodegenerative disease.
Now, University of Washington researchers have demonstrated that when humans use this technology – called a brain-computer interface – the brain behaves much like it does when completing simple motor skills such as kicking a ball, typing or waving a hand. Learning to control a robotic arm or a prosthetic limb could become second nature for people who are paralyzed.
“What we’re seeing is that practice makes perfect with these tasks,” said Rajesh Rao, a UW professor of computer science and engineering and a senior researcher involved in the study. “There’s a lot of engagement of the brain’s cognitive resources at the very beginning, but as you get better at the task, those resources aren’t needed anymore and the brain is freed up.”
In this study, seven people with severe epilepsy were hospitalized for a monitoring procedure that tries to identify where in the brain seizures originate. Physicians cut through the scalp, drilled into the skull and placed a thin sheet of electrodes directly on top of the brain. While they were watching for seizure signals, the researchers also conducted this study.
The patients were asked to move a mouse cursor on a computer screen by using only their thoughts to control the cursor’s movement. Electrodes on their brains picked up the signals directing the cursor to move, sending them to an amplifier and then a laptop to be analyzed. Within 40 milliseconds, the computer calculated the intentions transmitted through the signal and updated the movement of the cursor on the screen.
Researchers found that when patients started the task, a lot of brain activity was centered in the prefrontal cortex, an area associated with learning a new skill. But after often as little as 10 minutes, frontal brain activity lessened, and the brain signals transitioned to patterns similar to those seen during more automatic actions.
“Now we have a brain marker that shows a patient has actually learned a task,” Ojemann said. “Once the signal has turned off, you can assume the person has learned it.”
While researchers have demonstrated success in using brain-computer interfaces in monkeys and humans, this is the first study that clearly maps the neurological signals throughout the brain. The researchers were surprised at how many parts of the brain were involved.
“We now have a larger-scale view of what’s happening in the brain of a subject as he or she is learning a task,” Rao said. “The surprising result is that even though only a very localized population of cells is used in the brain-computer interface, the brain recruits many other areas that aren’t directly involved to get the job done.”
Several types of brain-computer interfaces are being developed and tested. The least invasive is a device placed on a person’s head that can detect weak electrical signatures of brain activity. Basic commercial gaming products are on the market, but this technology isn’t very reliable yet because signals from eye blinking and other muscle movements interfere too much.
A more invasive alternative is to surgically place electrodes inside the brain tissue itself to record the activity of individual neurons. Researchers at Brown University and the University of Pittsburgh have demonstrated this in humans as patients, unable to move their arms or legs, have learned to control robotic arms using the signal directly from their brain.
The UW team tested electrodes on the surface of the brain, underneath the skull. This allows researchers to record brain signals at higher frequencies and with less interference than measurements from the scalp. A future wireless device could be built to remain inside a person’s head for a longer time to be able to control computer cursors or robotic limbs at home.
“This is one push as to how we can improve the devices and make them more useful to people,” Wander said. “If we have an understanding of how someone learns to use these devices, we can build them to respond accordingly.”
With modern communication aids, users of electric powered wheelchairs can operate a PC and cellphone without human assistance. A new module is set to transform electric powered wheelchairs into communication hubs.
Writing text messages and e-mails, surfing the web, making phone calls – all these things can be a real challenge for people with disabilities. And that applies all the more to wheelchair users with impaired motor skills in their hands and to severely disabled people, who are dependent on communication aids to be able to operate electronic devices without difficulty. And a new communication aid is just what researchers from the Advanced System Technology (AST) branch of the Fraunhofer Institute for Optronics, System Technologies and Image Exploitation IOSB have developed at the request of its longstanding industrial partner, the medical technology manufacturer Otto Bock Mobility Solutions GmbH.
The new aid is an add-on module that expands the functionality of electric powered wheelchairs by connecting up the existing wheelchair control system (e.g. joystick, chin control) to a cellphone, PC, TV, games console, etc. via Bluetooth. The interface for data transmission is the wheelchair’s CAN bus, where all wheelchair data converges. “The module allows users to carry out all mouse functions – on their notebook or smartphone, say – and thereby check their e-mails, surf the web, and send an SOS in the event of an emergency. All USB-enabled devices are supported,” says Prof. Dr. Andreas Wenzel, group manager for embedded systems at the AST branch in Ilmenau.
Smartphone app calculates wheelchair range
The module is compatible with many electric powered wheelchairs from the Otto Bock range. Box-shaped and compact, its dimensions of 85 x 65 x 32 millimeters mean that it can be discreetly attached to the wheelchair. The box comprises both the hardware in the form of a printed circuit board and the software, and it has two Bluetooth interfaces. Wenzel describes the advantage of the second Bluetooth interface as follows: “The system not only enables interaction with electronic devices, it can also be used to transfer wheelchair data – such as battery capacity, motor currents, and errors in the drive system, for example – to a smartphone.” A specially developed smartphone app reads and processes the data.
“When users of electric powered wheelchairs are considering going on an excursion, they are often uncertain about how long the battery will last, because the energy consumed by the wheelchair depends on the temperatures outside and the hilliness of the terrain. A wheelchair uses up more power on steep hills than on flat roads. This uncertainty often means wheelchair users choose to stay in rather than venture out,” explains Wenzel. The Android app carries out a precise range projection. The app determines the current location , compares it against the battery capacity, and calculates if there is enough energy left to bring the wheelchair back to the home point. It obtains the requisite data from the Internet. Wheelchair users are informed how much further they can safely travel via their cellphones. When the capacity begins to run low, a warning appears on the smartphone display telling them that there is only enough power left for another ten kilometers. “This gives users certainty and peace of mind,” says Andreas Biederstädt, head of development for e-mobility and drive technology at Otto Bock. “The cellphone can be easily fitted to the wheelchair. Moreover, this enables us to do away with expensive industrial displays.”
A further advantage of the app is that the navigation functions allow users to call up wheelchair-accessible routes, for example, or disabled toilets. This means users of all-terrain wheelchairs can go off road and receive a selection of suitable routes on their display. “The add-on module offers users of electric powered wheelchairs greater autonomy, safety, and convenience,” sums up Andreas Biederstädt. “Not just the disabled but elderly people with restricted mobility stand to benefit from these sorts of mobility concepts with the Bluetooth module.”
Initial tests have been successfully completed, and wheelchair prototypes equipped with the innovative communication aid have already been presented. Otto Bock is currently planning to produce a pilot run, and the finished product should be on sale from the third quarter of this year. Researchers at Fraunhofer IOSB’s AST branch also want to drive the development of this technology. “The next step will see us linking our Bluetooth module up with home automation systems. This would enable disabled people to perform tasks such as setting the air conditioning, opening and closing blinds, and switching on and off lights without leaving their wheelchair,” says Wenzel.
Heide Pfützner was paralysed by a form of motor neuron disease
She has now created a series of paintings using new technology
Reads changes in brainwaves allowing users to choose between colours, shapes and tools
When Heide Pfützner was paralysed by a form of motor neuron disease it seemed that she would never paint again. But now, new technology has allowed the former teacher to produce a series of artworks using only her thoughts. The mother-of-four has mastered technology that allows her to paint pictured using the signals that come from her brain..
Happy: Heide Pfützner has been using technology that reads her brainwaves to create artworks on a computer
Abstract: Heide is given the opportunity to create colourful paintings with the new technology
Her thoughts control the colours, shapes and brushes she uses as the computer translates the tiny impulses to form pictures, reports the Sunday Telegraph Now, the artist is set to exhibit her work in Easdale, near Oban in Scotland. Ms Pfützner, who has Lou Gehrig’s disease in 2007, said: ‘I had never been fond of technical equipment, and despised working with a computer.
‘Brain-computer interface is a breakthrough technology that enables me with my thoughts to create art. Concentration and thoughts create expressive images. For the first time, this project gives me the opportunity to show the world that the disease has not been the end of my life.’ Ms Pfützner is only able to move her eyes after being left paralysed by the disease and now sells her colourful paintings online.
Amazing: The computer captures Heide's thoughts, allowing her to manipulate shapes and colour
Development: Heide describes the system as allowing her to get back into painting after her paralysis
Technology: The system was developed after scientists were studying how to allow people to use social media
Creating shapes: Heide uses the computer screen to create her art. She now sells it online
Electrodes are embedded in a cap that the user wears, and detects what options they want to choose. In future, the electrodes would be implanted into the cortex of the brain to increase the effectiveness of the process. The technology could also be used to give people who are paralyzed the opportunity to communicate. It detects changes in brainwave patterns, showing what the user wants to do. But researchers are now looking to plant a device into the brain to allow computers to connect with the user directly.
Technology: Heide is fitted with the cap as begins her drawings
Reading: The electrodes are embedded into the cap and read the changes in Heide's brainwaves
The future: Scientists hope that the technology can be embedded in user's brains to make the experience easier and more accurate
Dr Christoph Guger said the technology has come a long way: ‘Ten years ago we needed a whole week of training to get enough data for it to work accurately, but now we need just five minutes or less.’ The device comes from studies on how to allow patients to use social media such as Facebook or Twitter more effectively, but he describes painting as a more creative form of expression. The scientists are working with researchers in Japan to develop the brain implant technology.
I should have known that my sister, Nell Tredway Hardy, would use those three words in the title of her monthly column she's writing for our hometown newspaper.
I should have known because that's the kind of attitude she's worn as a badge of honor all her life.
The youngest of five in our generation, she earned the nickname Captain Zoom-Zoom as a little girl for barreling straight down the steepest of ski slopes, our parents watching in sheer terror. As a pint-sized equestrian, she commanded horses to thunder around cross-country courses and dance around a dressage ring. As a young woman, she scaled rock cliffs and submerged herself in caves -- both without a glancing thought to danger.
Nell raised three sons. She ran an eight-stall barn and worked full-time. She weathered an ill-fated marriage and fought back against the demons of an alcohol addiction.
And now my sister, 55, musters all the courage, determination and hope that she can, waging the biggest battle of her life against an insidious disease known as amyotrophic lateral sclerosis (ALS), "a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord." The doctor delivered the diagnosis over her cell phone one day in May of 2009.
She's well aware of all the statistics. According to the ALS Association: "Approximately 5,600 people in the U.S. are diagnosed with ALS each year. The incidence of ALS is two per 100,000 people, and it is estimated that as many as 30,000 Americans may have the disease at any given time." The life expectancy of an ALS patient averages a measly two to five years from the time of diagnosis.
The barn -- it's sold now. The saddles, bridles, and blankets -- they belong to others. Her 13-acre horse farm -- she traded it in for a two-bedroom condominium.
Doctors performed a tracheostomy in January 2012. She takes her nourishment through a feeding tube. Her disease has rendered her limbs useless; her main mode of transportation now is a behemoth of a mechanical wheelchair. One blink of her eyes means yes. Ever-so-slight wags of her head mean no. She carries on conversations with her eye recognition machine, which allows her to peck out letters with her eyes. And she breathes every night with the help of a ventilator whirring by her bed.
And yet my sister tells us, and all those who read her column, not to worry. Nell's tentative plan of acceptance of ALS hasn't meant she's stopped living. In fact, she's more than alive. She's teaching us life lessons each and every day.
Supported by a cadre of RNs and LPNs, her family (including seven nieces and nephews), and more friends than she can count, Nell rarely stops. Since her diagnosis, she's been on four Caribbean cruises and flown cross-country to Los Angeles, where she realized dreams do come true when she met her hero, Ellen DeGeneres. At home, she relies on her Friends of Bill W. meetings to keep both her inner being and her life compass on track.
And every month Nell busies herself with her column chronicling her life with ALS. It takes her an average of 40 hours to compose about 600 words with her eyes on her DynaVox machine. She writes of her sons Brendan, Emmet and Connor; her dogs Shelby and Rico; her patience and introspective meditation; her firm belief that she will live long enough to see a cure for ALS.
So during May, ALS Awareness Month, let's pay special tribute to Nell, all the others living with this disease, and those who have gone before them. Think of them the next time you take a step. Embrace your child. Speak softly to your loved one.
Not to worry, Nell, not to worry.
A clinical editor in the health field for 15 years, Caroline B. Tredway has become a student on the subject of ALS since her sister's diagnosis. Nell Tredway Hardy is writing a book that will chronicle her life as a person with ALS (pALS). For more by Caroline Tredway, click here.
Pioneering: Dr Henry Feldman of Harvard Medical School demonstrates the uses of iPad technology.
The iPad and its apps open a multitude of doorways to information and entertainment for millions of users. They've also moved into highly specialised areas in business, engineering, education and, perhaps most importantly, healthcare. They are giving voices to people who don't have the power of speech; tangible recognition to the blind; and improving the lives of thousands of disabled people.
They are revolutionising the way doctors and hospitals work, too. The devices are being clad in sterile, waterproof cases and taken into operating theatres to help surgeons in complex operations, and they're improving communication with patients about their ailments and treatments. They're being used between doctors, nurses and hospital medical and administrative systems.
Dr Henry Feldman, an assistant professor of medicine at Harvard Medical School in Boston, was recently in Australia demonstrating iPad systems for physicians, surgeons and hospitals. He believes he was the first doctor in the US, and probably the world, to harness an iPad. ''I got mine on day one - April 3, 2010,'' he says.
Part of his demo included dunking his iPad, clad in a clear plastic case called Frog Skin, into a bucket of water, showing it could be washed and sterilised as thoroughly as an endoscope for use in an operating theatre.
''The benefit is that instead of having to look up to a video screen to see medical images, the surgeon can have them on an iPad right beside the operating area - even take measurements on the screen with a swipe of his fingers,'' Feldman says.
In the US, doctors' use of iPads and their wealth of specialised iOS apps doubled between 2011 and 2012, according to a Manhattan Research study. Hospitals are rapidly installing network access and secure communications to support them.
''The iPad allows us to get [medication] orders in more quickly and safely, and access hospital records immediately,'' Feldman says.
''Patient care is more efficient and communication with patients better. It saves me time. We have ubiquitous, secure wi-fi at my hospital and I am not tied to a location. I can bring up images [MRI, X-ray and CT scans, and anatomical diagrams] at a patient's bedside, or when I talk with a surgeon I might meet in a hallway. I use my iPad 10 times more often than I use my stethoscope.''
In Victoria, at Yooralla, one of Australia's largest organisations supporting the disabled, iPads have been used since 2010 to help clients with physical and intellectual disabilities to live better, richer lives.
According to the Bureau of Statistics, there are more than 600,000 severely disabled Australians - about 3 per cent of the population - which has remained constant as our numbers grow. Yooralla receives 650 new clients every year.
Yooralla speech pathologists Martina Beggs and Helen McCulloch use technology to help people with complex communication problems and have used iPads since 2010.
Jane Farrall, a Melbourne consultant speech pathologist, was an early adopter of iOS devices. She experimented initially with the iPod Touch but found its small screen difficult for patients to handle.
''And then the iPad happened and everyone could see it changed the game,'' she says. ''It's now widely used in special schools all over Australia. It meets [many of] the needs of people with a wide range of other disabilities.
''Before iPad arrived, I would see people without speech and assess them for one of the custom-made augmentative and alternative communication [AAC] speech-generating systems that cost anything from $5000 to $30,000.''
Expensive customised equipment is still needed in some cases, ''but with an iPad it is now possible to get an AAC system for under $1000. The iPad has brought massive change,'' Farrall says.
Yooralla, a non-profit organisation, provides clients with up to $7000 for speech-generating devices and software, including apps, and works through ComTEC, an information and advice service, to support clients, their families and therapists in the adoption, selection and use of suitable technology and apps.
Vast numbers of apps are available from developer websites and Apple's App Store, but not all are suitable for seriously disabled people. Apps need to be carefully assessed against the needs of individuals, Beggs says, and, importantly, the family or carer support available.
Predictable, a text-to-speech app from British company Therapy Box, works with a Bluetooth switch for people with limited physical function, and has word prediction and an onscreen keyboard to make sentences that are spoken by a synthetic voice. It also provides access to Twitter, Facebook and SMS.
Because of high development costs, such apps are not cheap. Predictable is $169, and not the most expensive.
People with extremely limited control over their bodies often cannot use a keyboard or a touchscreen to scroll through text or control an app. One solution is technology called Eyegaze, which uses two or three cameras on a computer to accurately track eye movements over a virtual keyboard or onscreen symbols to command the computer or build text-to-speech sentences.
Eyegaze is coming to the iPad, probably as an app using accessory cameras, and several other, similar projects are also under way.
■ yooralla.com.au
■ comtec.com
The MYO armband lets you use the electrical activity in
your muscles to wirelessly control your computer, phone, and other favorite
digital technologies.
You can control presentations, video, content, games,
browse the web, create music, edit videos, and so much more!
Pioneering: Dr Henry Feldman of Harvard Medical School demonstrates the uses of iPad technology.