Thursday, 20 August 2015

5 Years of blogging

I realised the other day that we're already in August (and now over half way through). My first blog post was back in June 2010, which means that I've now been blogging for just over 5 years - and this is post number 128.

Reflections on this - When I first started this up I had in mind that it would be like a diary. I'd record my thoughts and findings, and that maybe a few other people would find it useful. I'm now 5 years down the line, and to a degree my blog still acts like a diary for my thoughts, and the way in which I write acts two-fold, firstly to present those thoughts so that others can read them, but also to act as a reminder to me for how I was feeling/what I was doing at the time.

I also realise that there are plenty of people who like to read up the information that I find. I get contacted fairly regularly be people who thank me for this blog, and how they have found it useful. the four most popular categories of pages in terms of readership are:

  • My own autumn survey
  • Reports from the UK HSP Support Group AGM
  • Pages about particular HSP symptoms
  • Reports about HSP research
However, I'm most happy to get comments when people are able to relate to the experiences that I describe or learn something new.

Talking of which I tweet about HSP some of the time. If you dont mind also seeing various noise/acoustics things you could follow me There are some recent #RareDisease things I've spotted and tweeted about:

Swedish scientists create an artificial neuron that mimicks an organic one

Scientists at Sweden’s Karolinska Institutet and Link√∂ping University have built what they claim is a “fully functional neuron” that mimicks the functions of a human nerve cell.
The “organic electronic biomimetic neuron” combines a biosensor and ion pump. It senses a chemical change in one dish and translates it into an electrical/ionic signal that travels along an “axon” to a “synapse” and releases chemical signals in another dish, that then trigger another neuron, etc.
Such a device could eventually be miniaturized and implantable, says lead investigator Agneta Richter-Dahlfors, Karolinska Institutet professor of cellular microbiology. The research objective: improve treatments for neurological disorders, which are currently limited to traditional electrical stimulation.
This strikes me as being potentially useful for HSP.

Paralyzed men move legs with new non-invasive spinal cord stimulation

Five men with complete motor paralysis were able to voluntarily generate step-like movements thanks to a new strategy that non-invasively delivers electrical stimulation to their spinal cords, according to a new study funded in part by the National Institutes of Health. The strategy, called transcutaneous stimulation, delivers electrical current to the spinal cord by way of electrodes strategically placed on the skin of the lower back.

“These encouraging results provide continued evidence that spinal cord injury may no longer mean a life-long sentence of paralysis and support the need for more research,” said Roderic Pettigrew, Ph.D., M.D., director of the National Institute of Biomedical Imaging and Bioengineering at NIH. “The potential to offer a life-changing therapy to patients without requiring surgery would be a major advance; it could greatly expand the number of individuals who might benefit from spinal stimulation.

This also strikes me as being potentially useful for HSP.

Nike Launches Flyease, Changing The Game For People With Disabilities

For college sophomore Matthew Walzer, simply putting on his shoes was an impossible task. Lacking the dexterity to get his foot in and out of his shoes, the Florida teen, who was born with cerebral palsy, had to enlist the help of his mother and father or others. While he could dress himself, Walzer, 19, told The Huffington Post, “shoes were the one issue” he had learned to deal with and accept.
So he decided to do something about it. Walzer, then in high school, sent a letter to Nike, first reaching out in 2012. His letter ended up in the hands of Nike CEO Mark Parker, who in turn passed it along to Tobie Hatfield, the company’s senior director of athlete innovation. Coincidentally, Hatfield had just embarked on his own journey to explore what Nike could do to help athletes facing physical challenges as well as the Challenged Athletes Foundation.
What resulted in the three years since was a partnership between Walzer and Hatfield’s team at Nike that culminated Monday with the company's unveiling of the Zoom Soldier 8 Flyease. The shoe is the first of its kind for the company, and perhaps any athletic brand specifically designed and dedicated to help those with disabilities and difficulties of buying and wearing shoes. It will be available July 16 in limited quantities at for North America.
“It’s basically kind of kickstarted a lot of work in this area,” Hatfield said of the shoe and the company’s hopes to continue innovating. “Once you start down this road, I don’t know how you could ever go back,” he said.
Whilst I've not yet had to deal with clothes issues, I already notice rapid wear on my shoes, and it makes me wonder if this focus might end up with there being some relevant clothing for those of us with a spastic gait.

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