Monday, July 22, 2013

Conference Day 4

Always at a conference there are one or two things that really stand out for you, and I'd been waiting for this to happen.  My curiosity had been spiked by a talk to be given by Prof Tony Holland about Vagus Nerve Stimulation, something I'd never heard of before.  What happens is that something similar to a pacemaker is inserted just beneath the skin on the chest.  It is designed to release electric impulses which stimulate the vagus nerve in the brain.  This type of treatment is used for patients with epilepsy and, during trials, it was noticed that patients lost weight.  So a trial was set up for 3 adults with PWS.

Presentation of this talk started with a brief introduction from Prof Holland and then each person with PWS spoke about their experiences, and then the parent spoke about the noticeable differences in behaviours, weight loss, appetite suppression etc.  The results were interesting.  Sadly, there was no weight loss, but there were noticeable changes in behaviours cited by both those with PWS and their families.  There was a very noticeable decrease in anxiety and stress, and also a decrease in the interest in food.  Tests were carried out at the beginning of the trial showing a timed session of "all you can eat" and done again after some months of treatment.  In the second "all you can eat" session, the interest in food, and consumption, was lower, although there was no overall weight loss.

What interested me most was hearing from the very articulate three adults who had undergone this treatment.  Each spoke highly of their increased confidence and lessened stress and all recommended this to anyone with PWS!  One lass said that without this measure of self-esteem, she would never have been able to get through what was the happiest day of her life - her marriage!

What more could you ask!


3 comments:

  1. This is very exciting research! We have shared your report with our followers on the Vanderbilt Kennedy Center - PWS Facebook page (https://www.facebook.com/VanderbiltPWS). They will be very excited to hear about this new work!

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    1. I agree - I'm pretty sure that trials are still continuing and certainly, when I hear anything I will let you know! The three people with PWS who talked at the conference still had their stimulators in. One of the side effects was that when the stimulation occurred, the voice was affected so that changed pitch just slightly. They all spoke so clearly and positively about their experiences, it was wonderful to hear.

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