Monday, 26 August 2013

Symptoms update - tide turning?

I wonder if I'm on the cusp of the start of the onset of significant symptoms. In the last few weeks I've been feeling that my legs are a bit stiffer, and my feet are a bit sore.

There doesn't seem to have been any specific things going on out of the ordinary. I'll keep tabs on this and see how things change.

I'm sort of expecting that this would be case as that is what happened to my mum.

It feels a bit odd to be waiting for this to happen, expecting the tide to turn and symptoms to change quite quickly, a bit like the current rate of change of sunset time as we move from summer into autumn.

On other matters I'm reconsidering the patients like me website. They are out to make money by selling information to companies, but I'm now thinking that this would be another way perhaps to influence the way drugs are developed.

Why am I reconsidering? I'm following them on twitter, and there are some interesting tweets. I tweet about HSP in and around tweeting about noise. Most HSP things I tweet about are on here as well.

Saturday, 17 August 2013

Opportunity to influence - Disaster survey for disabled people

Following on from Dr Nairs presentation at the  HSP Support Group AGM, here is an opportunity to influence thinking. The UN Office for Disaster Risk Reduction (UNISDR) and partners have  launched the first-ever survey of people living with disabilities on their coping capacity in the face of a disaster event. They have a survey for people living with a disability which runs until September 25th 2013. 

The survey seeks to establish (in simple terms) peoples disabilities and their ability to respond in an emergency. The survey also asks about types of disasters that you might encounter in any one year and planning for such disasters. There are 23 questions. This link tells you about the survey:

The survey (the 
English 2013 Survey on Living with Disabilities and Disasters) is here:
As the top of the survey indicates: "THIS SURVEY IS INTENDED ONLY FOR PERSONS LIVING WITH DISABILITIES AND CAREGIVERS" I've not actually answered it myself.
Various background reading: