Forced Intimacy: When Illness Makes Us Let Down Our Guards

Forced Intimacy: When Illness Makes Us Let Down Our Guards

als amyotrophic lateral sclerosis disability intimacy caregiving mnd motor neuron disease sexual intimacy

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

ALS and Social Security Benefits

als amyotrophic lateral sclerosis disability benefits social security

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.

For a Nahant family, life goes on with ALS

For a Nahant family, life goes on with ALS

als amyotrophic lateral sclerosis augmentative communication augmentative/alternative communication mnd motor neuron disease non verbal

 Via Boston Globe: http://www.bostonglobe.com/metro/regionals/north/2013/06/26/for-nahant-family-life-goes-with-als/EsGFyFBArgXF7i86T715UN/story.html

 

  

Matthew J. Lee/Globe staff

George Mazareas, his wife Cynthia Mazareas, and their daughter, Elni Mazareas in their living room.

NAHANT — George and Cynthia Mazareas are not living the life they had pictured when they got married in Greece 15 years ago.

When they started building a home in Nahant in 2000 and Cynthia got pregnant, they were looking forward to all the possibilities of the future.

But in 2003, George, now 53, was diagnosed with amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease, and the couple’s life changed forever. By 2005 he had to start using a feeding tube. By 2006, he needed a ventilator to breathe.

Cynthia Mazareas, 49, said her husband’s illness has led them to redefine what they want out of life.

“For a while we probably felt like we were giving up on a lot of the things we had dreamt of and hoped for as a married couple and as parents,” she said. “I think now that we’ve sort of come to terms, it’s more like rewriting the story. It’s a different story than the one we had imagined, but that doesn’t mean it’s not a quality story.”

‘I think now that we’ve sort of come to terms, it’s more like rewriting the story. It’s a different story than the one we had imagined, but that doesn’t mean it’s not a quality story.’ Cynthia Mazareas

Today, their home is mostly quiet, except for the hum of the machines that keep George alive. A former athlete who was active in community affairs, the Lynn native now sits paralyzed in a wheelchair, his movement limited to facial muscles. His daughter, Eleni, now 10, has never known his voice.

On Monday, the Mazareas family, joined by about a dozen friends, traveled to New York City to accept the Courage Award from Prize4Life , a nonprofit that works to find treatments and cures for the disease that took former governor Paul Cellucci ’s life earlier this month. There, Cynthia Mazareas delivered a speech on behalf of her husband, who spent weeks writing it when he was more capable of using a computer.

During the last decade, the Mazareases said, they have raised more than $1.5 million for the fight against ALS through events they were either involved with or inspired. However, Thomas Leavitt, Prize4Life chief development officer, said the Mazareas family earned the Courage Award not because of fund-raising, but because of their resilience, spirit of hope, and unwavering dedication to each other.

“The physical intimacy of their marriage would decline,” Leavitt said, “but they weren’t going to change their emotional intimacy or the relationship with their daughter, which was a big impetus to continue living the lives they’re living.”

Amyotrophic lateral sclerosis , also known as ALS, is a neurodegenerative disease that rapidly robs a person of the ability to initiate and control movement and eventually leads to paralysis. According to the ALS Association, this muscle atrophy leaves patients with an average life expectancy of two to five years. This year marks 10 years since George’s diagnosis.

Mazareas said that while she and her family would go on stage to accept Prize4Life’s honor, she shares it with everyone who has stuck by their side while George has progressively lost physical abilities.

“It’s very hard for some people to see that, and that’s where courage comes in,” she said. “I think our friends are as worthy of a courage award as we are. They’re not afraid to look into the face of ALS and deal with it.”

For George Mazareas, his participation in ALS charities like Prize4Life and The Angel Fund stems from a determination to help find treatments and cures.

Matthew J. Lee/Globe staff

Elni Mazareas took a picture of her dad with their family dog, Bailey.

“For me, it’s very emotional because I think of the PALS [people with ALS] that have gone before me and passed away — and I have known about 30 people — then I think about all the future ALS patients, and I feel a duty to do my part,” Mazareas communicated through his wife.

Since he started using a breathing tube, Mazareas cannot speak aloud. He communicates with his family with a numbers and letters system, a language Eleni learned as a Father’s Day present when she was 5.

To start, George mouths a number, 1 through 8, each indicating a specified series of letters, words, or numbers. The speaker starts reciting the series, waiting for George to blink, meaning they’ve reached the correct letter. They repeat the process until words and sentences are formed. Sometimes George looks away instead of blinking, a sign that a letter or word was miscommunicated, and they start over.

“George says that this is one of the best things I ever did for him, finding this communication device,” Cynthia said, adding that after rows one through five were established, George added a sixth (“who, what, when, where, how, why”), seventh, (“new word”), and eighth (numbers 0-10).

Despite the emotional challenge of seeing her husband in this condition and the patience required to communicate with him, Cynthia said he is still very much her partner in marriage and parenting.
“George is the big picture thinker, the visionary, and I’m more of the executor,” said Cynthia, an attorney. “He’s still my go-to person in life. George still does a lot of the big thinking in the house and gives me a lot of good advice and guidance and direction.”

For Eleni, her dad is the man who taught her about Marvel comics and Harry Potter, and like any other father and daughter, sometimes they butt heads.

“Never argue with him because you’re probably going to lose,” she said with a smile.

Cynthia said Eleni has picked up on her dad’s strength.'

“She’ll say, ‘The thing I’ve learned the most from my dad is you can get knocked down, but you can get back up again.’”

Update on Kingsbury Family's Struggle With ALS

Update on Kingsbury Family's Struggle With ALS

aac als amyotrophic lateral sclerosis augmentative communication Eye Gaze mnd motor neuron disease

via WABI Channel 5 News, Maine
http://www.wabi.tv/news/41172/update-on-kingsbury-familys-struggle-with-als


by Joy Hollowell - June 24th 2013 08:26pm -
 

Trapped in your own body.

That's how Jim Kingsbury describes his battle with ALS.

TV-5 has been following the Kingsbury family for more than four years, tracking their struggles as well as their successes.

Joy Hollowell has the latest update.
====
7-year old Jack Kingsbury enjoys spending time with his Dad. He was just a baby when Jim Kingsbury was diagnosed with Lou Gehrig's disease back in 2007. For the first few years, Lisa cared for Jim at home. A round the clock job that included parenting Jack as well as working a full-time job.

"He definitely got beyond my scope," says Lisa Kingsbury. "I felt like it was getting dangerous to keep him home."

About two years ago, the Kingsburys made the difficult choice of placing Jim in a nursing home in Biddeford. It is one of just a few facilities in the state that can adequately care for him, but the nearly three hour commute from Dover-Foxcroft is tough on Lisa and Jack.

"It's hard not being involved in his day to day care," admits Lisa. "That was a huge adjustment."

The disease has robbed Jim of his ability to move and to speak. But thanks to technology, he can still talk and interact.

"Oh, he's on Facebook all day," says Lisa with a smile.

Jim uses a DynaVox. By blinking or even just hovering his eyes over the keyboard, he can type out his thoughts, which a computer-generated voice then relays.

"Monday is date night," says Lisa. "Actually, it's been date night every night, lately," she adds with a smile. The two communicate via Facebook. "After Jack goes to bed, we sit and watch television. Mondays, it's Bones, and Thursdays, it's Master Chef."

ALS is a fatal disease and Jim has managed to surpass the predicted longevity of two to five years. But now, both he and Lisa are preparing for the day Jim loses his ability to move his eyes.

"Without being able to communicate, it would be hard to imagine prolonging this," says Jim Kingsbury.

"We have a plan,"says Lisa in a soft voice.

"We have tried to stay ahead of the hard decisions," adds Jim.

"We've said our goodbyes because we know in all likelihood, I probably won't be here when it happens," says Lisa, pausing a moment to hold back tears. "We've been lucky. Most people don't get the opportunity to say good-bye. We've had that conversation."

Since the start of our series, Jim has been asked how he copes with the cards dealt. Taking it one day at a time has always been his motto, and still is today.

"I still enjoy life," says Jim.

"We're enjoying the time we have together," adds Lisa.
====
Thanks to Skype, Jim was able to see his oldest son graduate from college and get married. A camera at the reception enabled Jim to watch the cake cutting and first dance.

Jim says he allows TV-5 to continue showing such a personal aspect of his life because he wants more people to understand what Lou Gehrig's disease is all about.

He welcomes anyone to contact him on Facebook. Just search under James Kingsbury.

Terminally ill mum lost her voice two years ago and communicates to kids with eye recognition technology

Terminally ill mum lost her voice two years ago and communicates to kids with eye recognition technology

aac Assistive Technology augmentative communication augmentative/alternative communication Eye Gaze

Emma Fitzpatrick has Motor Neurone Disease but tries to make the best of every day

Brave Emma with her family

Emma Fitzpatrick is just like any other mum – she loves her two children dearly.
But for the past couple of years they haven’t been able to hear her voice as the 47-year-old lost her speech after being diagnosed with Motor Neurone Disease.

In spite of this Emma and her devoted husband Jonathan still try and make every day a positive one.
People recently became more aware of MND when it was revealed RTE broadcaster Colm Murray was diagnosed with the illness in April 2010.

It was that January Emma realised something wasn’t right.

Jonathan said: “The first year was very slow, in January 2010 she noticed an infection in her voice where there was certain words she couldn’t pronounce properly and she was worried about it.”
MND is a rare neurological condition that affects two in 100,000 people.
It alters the motor cells in the brain and the spinal cord which enable us to move, speak, breathe and swallow.

With no nerves to activate the cells, muscle tissue eventually weakens and wastes away..
Generally, MND patients are given a general life expectancy of between two and five years after diagnosis and Emma has survived almost three years so far.

Jonathan, 53, said: “The progression of the illness was very quick at the beginning but strangely she has plateaued, she’s been the same for quite a while now.”

The couple have been married for 12 years and live in Kinsale, Co Cork with their two children – Rowan, eight, and five-year-old Alannah, who is called Kitty by her mum and dad.
Although MND has robbed Emma of her mobility and speech, she is able to communicate with those around her through the use of an eye-gaze computer technology.

Speaking about the affect MND has had on the children, Jonathan said: “They’re great, they keep us all going, they take the whole thing as normal in many respects.

“Emma can’t speak, she lost her voice a couple of years ago and that’s really tough that she can’t just tell the children how much she loves them or engage with them in that way, with her own voice.
“She can’t lift them up or console them when they’re crying, but they still feel very loved by her and very close to her.

“Emma is really at the heart of everything.”

Despite her difficulties, brave Emma has an online blog called ‘Shapeshifting Emma’ that she writes by using a special computer which reacts to her eye movement.

And it’s so important to her to have this method of communication.

She wrote: “It’s is my life-line and link to my family, friends and to all of you. Without it I wouldn’t survive.”

Jonathan added: “She keeps us all on our toes and talks to all of us with her eyes.

“Emma keeps in contact with people through email and writes her blog, if you’re sitting beside her sometimes she doesn’t need to use the audio, you can read it on the screen.

“It predicts the words because it knows a lot of the words she uses.

“Emma is a great writer the blog gives her a focus and a sense of her own capacity to contribute.
“The one thing with MND is that it robs you of your sense of self-worth and value because everything has to be done for you, so for Emma to be able to write and publish a blog gives her a huge sense of regaining her dignity.

“The Irish Motor Neurone Disease Association [IMNDA] staff are the most amazing people, they have provided Emma with the eye-gaze computer, the equipment in our house, the hoists and the bed.”

The IMNDA relies mainly on charity donations as they receive limited funding from the Government. This means that the IMNDA have just two nurse specialists to attend more than 300 MND patients in the country.

The couple get home-help and agency healthcare because Emma needs to be supported with food.
Jonathan said: “Emma didn’t go for PEG feeding [tubes for eternal feeding] and in a way I think it’s one of the reasons she’s still around because it has kept her swallow muscles still functioning.
“Emma needs to be helped with food three times a day because a very important part of MND is to keep your weight-level up and you need to eat a lot.”

Although Jonathan has to stay strong for his wife and family, he knows that Emma’s condition will continue to deteriorate.'

He said: “MND is unpredictable, you just don’t know what way it will turn.

“It’s really shocking what it does, it’s a cruel disease because people don’t know what causes it and they don’t have a cure.

“You watch your body deteriorate and lose power slowly but surely.”

Even though Emma is terminally ill, she tries to live life to the best of her ability and enjoy every minute.

Jonathan said: “She had a coffee morning recently with the other mums, every Saturday night she has friends by, we have a wheelchair car and we get out as much as we can so we live as full of life as we can.”

He feels that attitude is a key element in fighting MND.

“You need to find ways of enabling yourself to think positively if you can.

Jonathan said: “At first that’s really impossible because it seems like your hit by a tsunami of horrible things and you’re distraught and traumatised.

“But now Emma has found ways – every morning she meditates and listens to music and inspiring words.”

The love Jonathan holds for Emma is obvious and that is one thing MND will never take away from her.

 

He said: “The fact that Emma can find moments of hope and joy inspires me.

“People need to know about the condition, it’s awful, it’s horrible.

“But those suffering with MND need to know that it is possible to live through it with a quality of life.”

Tomorrow marks the world’s annual MND Global Awareness Day and the Irish association is hoping that members of the public will join in their fundraising efforts to help those with the illness here.
The IMNDA are asking people to Drink Tea for MND by organising a fundraising morning at home, in work or anywhere.

And when you read Emma’s blog, having a few cups of tea seems like a very small thing to do.
Emma quoted Mary Oliver poetry on her blog last week.

And Jonathan thinks the words of the poem she chose speak to everyone, even if she can’t.
“Hello, sun in my face. Hello you who made the morning and spread it over the fields… Watch, now, how I start the day in happiness, in kindness.”

To read Emma’s blog click here and for more information about the MND’s Global Awareness Day this Friday, see www.imnda.ie  or call freefone 1800 403 403--1800 403 403 FREE 

 

 

Living with motor neurone disease: Hearing 'last orders' inspired Mark's fight

Living with motor neurone disease: Hearing 'last orders' inspired Mark's fight

aac als amyotrophic lateral sclerosis Assistive Technology augmentative communication mnd motor neuron disease

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.

New Tasks Become as Simple as Waving a Hand with Brain-Computer Interfaces

New Tasks Become as Simple as Waving a Hand with Brain-Computer Interfaces

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.”

Rao and UW collaborators Jeffrey Ojemann, a professor of neurological surgery, and Jeremiah Wander, a doctoral student in bioengineering, published their results online June 10 in the Proceedings of the National Academy of Sciences.

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.”

The research team, along with the National Science Foundation’s Engineering Research Center for Sensorimotor Neural Engineering headquartered at the UW, will continue developing these technologies.

This research was funded by the National Institutes of Health, the NSF, the Army Research Office and the Keck Foundation

Electric Wheelchairs Become Communication Hubs

Electric Wheelchairs Become Communication Hubs

als amyotrophic lateral sclerosis Assistive Technology disability mnd ms Power Wheelchairs sci

Tue, 06/04/2013

    

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.

For more information visit www.fraunhofer.de.