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Archive for March, 2013

Michele-Marie Roberts and her sons Calum and Corey

 

 

While Michele-Marie Roberts was enjoying a two-week dream cruise to Hawaii with her husband and two sons, she had no idea that her world would be turned upside down when she stepped on to dry land.

 

“I walked down the gangplank and collapsed – completely blacked out. I got the flight back home and I was staggering all over the shop.

 

“I was slurring my speech – on one occasion I blacked out while chopping vegetables,” she recalls.

 

The holiday ended in January 2008 but Michele-Marie still feels as if she is on that cruise ship. She’s been seasick for five years.

 

“It’s like the disorientating feeling you get after coming off a waltzer at the fair – all the time. It’s horrendous.”

 

When it is at its worst, even lying down doesn’t help, she says.

 

Mal de Débarquement Syndrome (MdDS), as the condition is known, is extremely rare and very little is understood about why it occurs and what can cure it. Few doctors have even heard of it.

 

Michele-Marie, from Berkshire, was sent for an MRI scan and tested for multiple sclerosis and a range of other disorders before she was finally diagnosed six months after her cruise, thanks to doctors at the Royal Berkshire Hospital who recognised her symptoms.

 

But not all sufferers are quite as lucky – many can spend years looking for a diagnosis.

 

‘Draining’

 

Unsurprisingly, feeling sick and in motion every minute of her waking life has taken its toll. She says it ruined her marriage because she could no longer look after or home-school her two sons, who are autistic, leaving her husband to take on the role of full-time carer.

 

After the divorce, at the age of 49, she had to look for a job for the first time in years, despite feeling physically and mentally drained by the persistent seasickness.

 

She was employed for a while but the experience was too draining so she decided to set up her own business – a dating agency called Wavelength for single parents of special needs children.

 

“I have days when I feel sorry for myself and there are days when I wake up and I wonder if it’s gone away. But then it says, ‘da-da – here I am’.”

 

There are times when the syndrome can feel particularly debilitating, such as when she feels stressed, when shopping in supermarkets and using a computer.

 

Strip lighting can also aggravate the feelings of rocking and swaying.

 

Thankfully there are activities that alleviate the symptoms too, she says, including vigorous exercise, swimming and driving. She does at least two hours of exercise every day to help her cope.

 

Read in Full:

http://www.bbc.co.uk/news/health-21786689

 

Wavelength Dating

(Dating Site for Single Parents of Special Needs Children):

http://www.wavelengthdating.com/

Facts on MdDS

  • *Little research has been carried out on Mal de Débarquement Syndrome, which means the “sickness of disembarkment”.
  • *Only around 100 cases have been studied by scientists.
  • *As a result, its underlying causes are unknown and there is no cure.
  • *It tends to occur after travel on boats and ships but can be triggered by air travel.
  • *It is characterised by constant feelings of rocking, bobbing, swaying and nausea.
  • *Other symptoms can include extreme tiredness, cognitive slowing or “brain fog” and mood changes.
  • *It has been around for a long time. In 1881 an article in The Lancet alluded to the problem when describing the experience of sailors when they tried to walk on the ground after being at sea.

 

LINKS

 

MdDS:

http://www.mdds.org.uk/

 

MdDS Foundation:

http://www.mddsfoundation.org/

 

MdDS Support Page:

http://www.etete.com/mdd/

 

Timothy C. Hain M.D.MDD(Includes Survey Study):

http://www.tchain.com/otoneurology/disorders/central/mdd.html

 

MdDS Current Knowledge:

http://www.etete.com/mdd/knowledge.html

 

Atlantic Coast Ear Specialists:

http://ww2.earaces.com/

 

BPPV symptoms and the very effective Canalith Repositioning Procedure:

http://www.patient.co.uk/health/Benign-Paroxysmal-Positional-Vertigo.htm

http://vestibular.org/understanding-vestibular-disorders/treatment/canalith-repositioning-procedure-bppv

 

Vestibular Disorders Hotsheet:

http://www.conciliocreative.com/dizzy/

 

Vestibular Disorders Association:

http://vestibular.org/

 

Sylvie Bartels’ Story of MdDS:

http://www.mddsfoundation.org/sylvie-bartels-story-of-mdds/

 



 

Mar. 6, 2013 — In a world first, a team of researchers at the Krembil Neuroscience Centre and the University Health Network have shown that Deep Brain Stimulation (DBS) in patients with chronic, severe and treatment-resistant Anorexia Nervosa (anorexia) helps some patients achieve and maintain improvements in body weight, mood, and anxiety.

 

The results of this trial, entitled Deep Brain Stimulation of the Subcallosal Cingulate Area for Treatment-Refractory Anorexia Nervosa: A Phase I Pilot Trial, are published today in the medical journal The Lancet. The study is a collaboration between lead author Dr. Nir Lipsman a neurosurgery resident at the University of Toronto and PhD student at the Krembil Neuroscience Centre; Dr. Andres Lozano, a neurosurgeon, at the Krembil Neuroscience Centre of Toronto Western Hospital and a professor and chairman of neurosurgery at the University of Toronto, whose research lab was instrumental in conducting the DBS research; and Dr. Blake Woodside, medical director of Canada’s largest eating disorders program at Toronto General Hospital and a professor of psychiatry at the University of Toronto.

 

The phase one safety trial investigated the procedure in six patients who would likely continue with a chronic illness and/or die a premature death because of the severity of their condition. The study’s participants had an average age of 38, and a mean duration of illness of 18 years. In addition to the anorexia, all patients, except one, also suffered from psychiatric conditions such as major depressive disorder and obsessive-compulsive disorder. At the time of the study, all patients currently, or had previously, suffered multiple medical complications related to their anorexia — altogether, the six patients had a history of close to 50 hospitalizations during their illnesses.

 

Study participants were treated with Deep Brain Stimulation (DBS), a neurosurgical procedure that moderates the activity of dysfunctional brain circuits. Neuroimaging has shown that there are both structural and functional differences between anorexia patients and healthy controls in brain circuits which regulate mood, anxiety, reward and body-perception.

 

Patients were awake when they underwent the procedure which implanted electrodes into a specific part of the brain involved with emotion, and found to be highly important in disorders such as depression. During the procedure, each electrode contact was stimulated to look for patient response of changes in mood, anxiety or adverse effects. Once implanted, the electrodes were connected to an implanted pulse generator below the right clavicle, much like a heart pacemaker.

 

Testing of patients was repeated at one, three, and six-month intervals after activation of the pulse generator device. After a nine-month period following surgery, the team observed that three of the six patients had achieved weight gain which was defined as a body-mass index (BMI) significantly greater than ever experienced by the patients. For these patients, this was the longest period of sustained weight gain since the onset of their illness. Furthermore, four of the six patients also experienced simultaneous changes in mood, anxiety, control over emotional responses, urges to binge and purge and other symptoms related to anorexia, such as obsessions and compulsions. As a result of these changes, two of these patients completed an inpatient eating disorders program for the first time in the course of their illness.

 

“We are truly ushering in a new of era of understanding of the brain and the role it can play in certain neurological disorders,” says Dr. Lozano. “By pinpointing and correcting the precise circuits in the brain associated with the symptoms of some of these conditions, we are finding additional options to treat these illnesses.”

 

While the treatment is still considered experimental, it is believed to work by stimulating a specific area of the brain to reverse abnormalities linked to mood, anxiety, emotional control, obsessions and compulsions all of which are common in anorexia. In some cases after surgery, patients are then able to complete previously unsuccessful treatments for the disease. The research may not only provide an additional therapy option for these patients in the future, but also furthers practitioners’ understanding of anorexia and the factors that cause it to be persistent.

 

“There is an urgent need for additional therapies to help those suffering from severe anorexia,” says Dr. Woodside. “Eating disorders have the highest death rate of any mental illness and more and more women are dying from anorexia. Any treatment that could potentially change the natural course of this illness is not just offering hope but saving the lives for those that suffer from the extreme form of this condition.”

 

Read in Full:

http://www.sciencedaily.com/releases/2013/03/130306220838.htm?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+sciencedaily%2Fmind_brain%2Fanxiety+%28ScienceDaily%3A+Mind+%26+Brain+News+–+Anxiety%29

ARTICLES

 

Anorexia Nervosa in Autistic Women/Disorders Are Common In Adults Who Have Had Anorexia/Milkshakes for Anorexia:

http://www.aspie-editorial.com/2011/01/14/anorexia-nervosa-in-autistic-womendisorders-are-common-in-adults-who-have-had-anorexiamilkshakes-for-anorexia/

 
LINKS & RESOURCES

 

(Health Care Advice)Anorexia:

http://healthcareadvice.org/anorexia/anorexia-nervosa-effects-on-family/

 

(HelpGuide.org)Anorexia Nervosa: Signs, Symptoms, Causes, and Treatment:

http://www.helpguide.org/mental/anorexia_signs_symptoms_causes_treatment.htm

 

Eating Disorders Organizations(USA):

http://www.something-fishy.org/other/organizations.php

 

Eating Disorders Organizations(UK):

http://www.disordered-eating.co.uk/help-for-eating-disorders/eating-disorders-organisations-uk.html

 

MGEDT – Men Get Eating Disorders Too
‘Men Get Eating Disorders Too’ is a UK based charity dedicated to representing and supporting the needs of men with eating disorders. The website provides essential information that is specific to the unique needs of men and an online space for men to get their voices heard.
http://mengetedstoo.co.uk/

 

If you or a loved one has anorexia…Call the National Eating Disorders Association’s toll-free hotline at 1-800-931-2237 for free referrals, information, and advice.

 

BOOKS

Anorexia Nervosa: A Survival Guide for Families, Friends and Sufferers [Paperback]

http://www.amazon.co.uk/Anorexia-Nervosa-Survival-Families-Sufferers/dp/0863777600/ref=sr_1_1?ie=UTF8&qid=1362753689&sr=8-1

http://www.amazon.co.uk/Overcoming-Anorexia-Nervosa-Christopher-Freeman/dp/1849011303/ref=sr_1_4?ie=UTF8&qid=1362753689&sr=8-4

http://www.amazon.co.uk/Anorexia-Nervosa-Recovery-Nutritional-Understand/dp/1905140096/ref=sr_1_5?ie=UTF8&qid=1362753689&sr=8-5

http://www.amazon.co.uk/Overcoming-Anorexia-Nervosa-ebook/dp/B0097AXXWG/ref=sr_1_7?ie=UTF8&qid=1362753689&sr=8-7

http://www.amazon.co.uk/Anorexia-Nervosa-The-Wish-Change/dp/0863774083/ref=sr_1_10?ie=UTF8&qid=1362753689&sr=8-10

http://www.amazon.co.uk/Skills-based-Learning-Caring-Eating-Disorder/dp/0415431581/ref=sr_1_14?ie=UTF8&qid=1362753689&sr=8-14

http://www.amazon.co.uk/Shrink-Journey-through-Anorexia-ebook/dp/B005FG68IC/ref=sr_1_23?ie=UTF8&qid=1362754139&sr=8-23

http://www.amazon.co.uk/Wasted-Memoir-Anorexia-Bulimia-ebook/dp/B000FCJYFK/ref=sr_1_52?ie=UTF8&qid=1362754235&sr=8-52

http://www.amazon.co.uk/Anorexia-Boy-Recovery-recovery-anorexia/dp/0957511817/ref=tag_dpp_lp_edpp_img_in

http://www.amazon.co.uk/An-Apple-Day-Recovery-ebook/dp/B0080S2A20/ref=pd_sim_kinc_4

http://www.amazon.co.uk/Mealtimes-and-Milestones-ebook/dp/B003NX6TXS/ref=pd_sim_kinc_3

http://www.amazon.co.uk/Thinspo-ebook/dp/B009R8AH2W/ref=pd_sim_kinc_3

http://www.amazon.co.uk/Thin-ebook/dp/B002RI90Q8/ref=pd_sim_kinc_4

 



Georgetown University

Georgetown University is a private, Jesuit, research university whose main campus is in the Georgetown neighborhood of Washington, D.C. Founded in 1789, it is the oldest Catholic university in the United States. Georgetown administers 180 academic programs in four undergraduate and three graduate and professional schools, and the programs in international affairs and law are particularly selective and well regarded. In addition to its main campus, renowned for the neo-Romanesque Healy Hall, Georgetown operates a law center on Capitol Hill, as well as auxiliary campuses in Italy, Turkey, and Qatar.

 

 

Last month saw the annual two-week frenzy of student government campaigning at Georgetown University, where candidates plaster campus with fliers and organize campaign talks in hopes of winning enough student support to be elected President and Vice President of the student body. After the candidates held a forum on racial diversity at the Black House and addressed women’s issues and feminism in a separate event, I noticed that the four campaign websites all included discussion of social justice, pluralism, and diversity in the candidates’ platforms, but not one of them addressed disability issues. 

 

As a disabled student, I was disappointed that the issues that would directly affect me were going unaddressed in the campus debates, and so I wrote a six item questionnaire on disability issues specific to Georgetown that I posted to Facebook and emailed to the candidates. I asked candidates how they would advocate for Georgetown to be more accessible to students with all types of disabilities, how they would address a stigmatizing environment toward disabled people, what they would do to support my initiative to form a Disability Cultural Center, and how they would include disabled students in campus leadership and in discussions on disability.

 

Of the five candidate pairs, four sent written responses to the questionnaire; three thanked me for compiling and distributing it; and the largest campus newspaper, The Hoya, published an article on the disability questionnaire and the candidates’ responses.

 

I would never have thought to contact the student government candidates directly had it not been for the training on campus organizing and coalition building that I received during Autism Campus Inclusions’s summer leadership academy last August. If you’re interested in making real change on your campus, you should apply for ACI too.

 

– Lydia Brown, Autism Campus Inclusion 2012 Graduate


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Most people think video games and reading don’t mix, but it turns out a little Halo here and there might actually be effective in treating dyslexia.

 

So says a group of neurologists from Italy’s University of Padua, who found a correlation between a dyslexic child’s visual attention span and their ability to read. The results of their study, published in the most recent edition of Current Biology, indicate that playing video games for just 12 hours is more beneficial than a full year of intense therapy.

 

Not just any game will do, though. To get the most benefits from a console, scientists say the game must be fast-paced, with action games being ideal.

 

Perhaps even more startling was the finding that the improvements were not just short term, but had lasting effects that still outshined traditional therapy.

 

“We tested reading, phonological, and attentional skills in two matched groups of children with dyslexia before and after they played action or nonaction video games for nine sessions of 80 min per day,” the authors said. “We found that only playing action video games improved children’s reading speed, without any cost in accuracy, more so than 1 year of reading development and more than or equal to highly demanding traditional reading treatments. Attentional skills also improved during action video game training.”

 

Researchers studied two groups of 10-year olds: one playing action games and one playing slower-paced titles. Those who picked up the faster-paced games showed a general reading improvement of up to 40 percent, cutting their reading speed almost in half. Players of non-action games showed no noticeable improvement.

 

“Our findings – supported by results showing that attention can be studied and efficiently trained during infancy – pave the way for low-resource-demanding early prevention programs that could drastically reduce the incident of reading disorders,” wrote researchers.

 

Roughly 10 percent of all children suffer from some form of dyslexia. The cause of the disorder is still unknown, but current treatments require significant resources.

 

A positive link between gaming and reading isn’t without precedent. Several studies have linked gaming with improved eyesight and increased focus. In 2007 a professor at the University of Connecticut made waves by using Halo to help teach classic literature.

 

The doctors behind the study note that more research is required into the benefits of gaming for dyslexic patients, but this could open the door for a low-cost way of reducing reading disorders. Sounds like a lot more fun, too.

 

Source:

http://uk.games.yahoo.com/blogs/plugged-in/video-games-top-treatment-dyslexia-researchers-184456410.html

Related Articles

 

Dyslexia: Improving Reading and Writing Skills:

http://www.aspie-editorial.com/2011/01/22/dyslexia-improving-reading-and-writing-skills/

 

Teachers Need Greater Awareness of Language Disorders, Research Finds:

http://www.aspie-editorial.com/2011/05/20/teachers-need-greater-awareness-of-language-disorders-research-finds/

 

Widening our Perceptions of Reading, Writing Difficulties:

http://www.aspie-editorial.com/2011/01/22/widening-our-perceptions-of-reading-and-writing-difficulties/



 

Feel free to forward:

 

The Canton Journal (the local newspaper from the town in which the Judge
Rotenberg Center is located) is conducting a poll to determine whether
people support the Massachusetts Governor’s efforts to terminate the consent
decree that gives the Judge Rotenberg Center the right to use electric shock
to control residents’ behavior. So far the responses have been about even.
The poll is quick to take. It’s wording is a little odd:

 

Sen. Brian A. Joyce applauded Governor Deval Patrick’s effort to get a
1987 court order overturned allowing the Judge Rotenberg Center in Canton to
continue to use aversive therapies, like electric shocks, on disabled
children. Do you agree with Joyce?

 

If you agree that the use of electric shock for behavior control should be
eliminated; please click below and vote “yes”.

 

http://www.wickedlocal.com/canton/x1551253715#axzz2LrVLeM8e