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Tuesday, 2 October 2012

Parkinson's Voice Initiative - Please make a 3 minute phone call & help!

Neurological disorders such as Parkinson's destroy the ability to move. There is no cure available for over 6 million people worldwide struggling with this disease.

Unfortunately, there are no biomarkers (e.g. blood tests) available to get objective information. They present with incurable weakness, tremors and rigidity. Currently the neurological test available is very costly and most do not get it as a result. Like the extremities, the voice also is affected by Parkinson's disease. Parkinson's Voice Initiative intends to change that. 

Dr Max Little who is a Wellcome Trust-MIT Postdoctoral Research Fellow, Media Lab, Massachusetts Institute of Technology, Boston has come up with a technology to get this objective data for Parkinson's disease using voice. They started with about 86% accuracy and now have achieved 99% accuracy. This test will be ultra low cost and anyone (general population) will be able to administer this test when it becomes available.

Here is the contact number for USA: 1-857-284-8035 

Everyone can help!…Whether you are healthy or living with Parkinson’s, all you have to do is record your voice and that information is collected to build a system to screen for and monitor the symptoms of this debilitating disease. This is a global call and contact numbers for 9 countries are available which equates to about 750,000 people in the world.

All you need to do: make a low-cost, anonymous, three-minute phone call. They aim to collect 10,000 voice recordings. You can call using your mobile / land line telephone. In case someone has questions about privacy - all recordings are non-identifiable, and no personal information is stored. 

Please share this information with as many people as you can. You can also post your comments below. Please call now!



A YOUNG father who became trapped in his body after a devastating stroke has learned to walk and talk again – by copying his baby daughter.
Mark Ellis was just 22 when he suffered a stroke and locked-in syndrome – a nightmarish condition which leaves a victim’s brain alert but the body paralysed.

His wife Amy, 32, had given birth to their daughter Lola-Rose just two weeks earlier in August 2010.

Mark found himself completely helpless and only able to communicate by rolling his eyes.

But despite being put into an induced coma and given a slim chance of survival, Mark has astounded doctors.

Amy said: “It’s amazing that he and Lola-Rose have learned to do things together – there wasn’t much time between them both taking their first steps. 
"They use toys, books, games and the iPad together to learn how to do things and communicate.”

Just days before his stroke, Mark, from Clay Cross, Derbyshire, was working at a mobile phone shop when he had a severe headache.

Doctors gave him paracetamol and told him to go to bed, but a scan the next day showed he had suffered a stroke.

Amy said: “It was just so hard to take in. We had been married two months and Lola-Rose was just two weeks old. It was a dream turned into a nightmare. 
"He’s young and healthy, who’s never smoked, taken drugs or drunk excessively, so it was hard to understand.

“The doctors didn’t expect him to survive but his youth and mental strength helped him pull through.”

Mark’s family were at his bedside a week after his stroke when he woke up. But he could still only communicate
by rolling his eyes up for “yes” and down for “no”.

Doctors said a blood clot in his brain meant it was unlikely he would ever walk or talk again.

But Mark, now 23, sat up and fed himself within months.

Amy said: “Lola-Rose had started blabbering and making baby noises. Mark’s therapist told him he should copy her.

“He started to make the same sounds and then words came too.”

Mark left hospital eight months later. 

“He can use his frame to get around and the physiotherapist is positive he can get Mark walking fully again,” said Amy, who gave up working as a hairdresser to look after him.

“I was told not to expect anything from Mark after his stroke. Anything and everything he does now is just amazing.”

Sue Potter, matron at Chesterfield Royal Hospital where Mark was sent, said: 
“We have 500 people who have had a stroke each year, but never anyone as young as Mark.

“His determination and having a baby have surely contributed to his recovery.”