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.”
