4 December 2012 parkinson’s voice initiative

4 December 2012  parkinson’s voice initiative

Ref number _____

Cassi Creek:  Since receiving a disability rating in the VA system due to tinnitus, I have volunteered for any research project that might provide benefits to others who live with tinnitus or other forms of compromised hearing. 

          Hearing loss limits our ability to communicate amongst our selves.  It creates tension, can cause one to feel isolated, and may limit what one does to earn a living or for entertainment and relaxation.  Beethoven may have been able to create symphonic music after becoming deaf.  I’m nowhere near that capable. 

          I know exactly where and when the initial damage to my hearing occurred.  Cue the Way Back machine, Sherman!

          And since we’re riding a faint glimmer of hope, program that machine so that I miss the Agent Orange exposure. 

          For the last year or so I’ve noticed a bilateral trimmer, increasing immobility in my left 4^th and 5^th fingers, deterioration of handwriting that has never been all that legible to begin with.  My primary care physician noticed some physical symptoms that link with those Gloria and I have noticed. What this all adds up to is a diagnosis of Atypical Parkinsonism.  I don’t know how  rapidly or how far it will progress.  I’ve been seen by a consulting neurologist and have started a course of medication.  To date, all the “rule out” procedures have been negative, suggesting that the diagnosis is correct. 

          I’ve been looking for a way to pass this  information on to friends  I ran across this diagnostic research being done by a mathematician, Little, with apparent highly accurate diagnostic reliability.  I think that I’d like to ask everyone to take 3-5 minutes and to take part in the study.  The links are below along with some background. 

          Thanks!

"http://www.parkinsonsvoice.org/

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“Simply place a call based on the country where you’re located:

	USA	1-857-284-8035
	Brazil	11 3957-0683
	Mexico	55-41703631
	UK	01865 521168
	France	02 49 88 05 76
	Spain	91 123 4793
	Argentina	11.5252.8741
	Canada	1-647-931-5776
	New Zealand	09 984 9434

"Everyone can help…

Whether you are healthy or living with Parkinson’s, help provide the voice information needed to build a system to screen for and monitor the symptoms of this debilitating disease.

All you need to do: make a low-cost, anonymous, three-minute phone call.

http://www.parkinsonsvoice.org/vision.php

Neurological disorders such as Parkinson's destroy the ability to move; there are over 6 million worldwide with the disease, but no cure. Until we have a cure, and indeed, to find a cure, we need objective tests. Unfortunately, there are no biomarkers (e.g. blood tests).

Current objective symptom tests for Parkinson's are expensive, time-consuming, and logistically difficult, so mostly, they are not done outside trials. What is exciting though: voice is affected as much by Parkinson's as limb movements, so we have developed the technology to test for symptoms using voice recordings alone.

This could enable some radical breakthroughs, because voice-based tests are as accurate as clinical tests, but additionally, they can be administered remotely, and patients can do the tests themselves. Also, they are high speed (take less than 30 seconds), and are ultra low cost (they don't involve expert staff time). So, they are massively scalable.

We see the following as having the most impact:

1.      Reduce logistical difficulties in routine practice - no need to visit the clinic for checkups.

2.      High-frequency monitoring for individualized treatment decisions. With this data, we can optimize drug timing and dosage for maximum effect.

3.      Cost-effective mass recruitment for treatment trials. Recruiting very large numbers into trials for new treatments will speed up the search for a cure.

4.      Population-scale screening programs. Searching for early 'biomarkers' could find the signs of the disease before the damage done is irreparable.

The Parkinson's Voice Initiative aims to record 10,000 voices across the world - we want to collect enough recordings to address the goals above. We need voices of both healthy and Parkinson's patients. Your contributions will help us achieve our aims.

http://www.parkinsonsvoice.org/feedback.php

At the end of the call we provide a reference number that you can enter here, along with your email address. We want to involve participants as much as possible in the research process. While we can't give clinical information such as a diagnosis, we will let you know periodically about progress of the research. We may be able to give some non-clinical information about your voice quality in due course. Please note that we have limited resources: we can't guarantee the timing of any kind of response. Please be patient!”

© 2012 Parkinson's Voice Initiat