Laser Focus

For many years now, part of the fight against ALS has been focused on finding reliable biomarkers. This has proven difficult as there is so much variability in progression and phenotype. However, what if you had something better than a biomarker? How about direct observation of the motor neurons and the neuromuscular junctions. This is a sales video of the type of device used (a confocal microendoscope). And here is a news video with the device being used in diagnosis of another condition.The ability to live-image, in-vivo, down to the individual cellular level is super cool and is nearly "Star Trek" in terms of nifty. Professor Richard Ribchester is the person leading the work. This tool may be enormously helpful in studying neurodegeneration and in gauging efficacy of any experimental drugs or treatments.

Social Media

In the past few months a group of ALS patients (PALS) and caregivers (CALS) have banded together via social media to support each other, spread awareness, educate themselves, and effect real change in their lives. This is more than blog posts and Facebook status updates but rather a concerted and united effort to fill some of the void in the research and treatment of their disease. Using email and messaging, individual projects have combined as a force-multiplier and are already beginning to see results. The ease of using and linking various social media technologies have allowed the infirm to reach out to and engage a global audience in a way and with an impact never before possible. They can do this because they are young, angry, and embrace technology to support and replace lost physical abilities. This movement represents a potential paradigm shift in the way ALS is perceived and dealt with. The list of projects includes (but is certainly not limited to) my project to draft Hugh Laurie to be an ALS spokesman, Thomas Ohlson's Petition to ALSA National, the remarkable and unprecedented ongoing serial documentary following Timothy Lafollette from diagnosis to current time, and the recent various and coordinated efforts to rescue a quadriplegic PALS from an abusive nursing home situation (in which this blog also participated). There are many other projects with various strategies, but all with the goal of increasing awareness, research funding, and support efforts. Where in the past these efforts would be singular, isolated, and have very limited impact, with the use of social media (Facebook, Twitter, blogs, online forums, email and messaging/chat systems) they are now being coordinated and their message distributed all over North America. As the number and scope of projects increase, there can only be a positive effect. If you have or know of a project to increase ALS awareness, please hook up with us via social media!

Wordsmith

Since I am on a vent (tube stuck through neck into trachea, below vocal cords) and can no longer talk, I must throw my voice to another object. I therefore create a new word describing this amazing feat: "Venterloquism" This makes me and other similarly entubed PALS (along with our brothers and sisters in high cervical injury) Venterloquists. This is not to be confused with Ventriloquism which involves the creepy practice of people with Dissociative Identity Disorder manually sodomizing puppets for the purpose of entertainment. Venterloquism involves any of several methods of overcoming a cruel obstacle to communication. Methods include the rudimentary Eyebrow Arch (induce your meatpuppet to say "yes" or "no"), The Ouiji (make your proxy point out letters and phrases on a board), and my personal favorite, The Hawking (making your words emanate from a nearby computer). Advanced and prepared Venterloquists can even use The Hawking to produce their actual voice for certain phrases! Venterloquism is a growing skill set among a diverse population of participants. Please support your local Venterloquist!

911

I need everyone reading these words to take a few minutes to read these words. This has nothing to do with politics. This is a genuine emergency call for another PALS in desperate need. If anyone is in the area I implore you to consider some volunteer work. Contact me for details if you are able to volunteer. This is shocking and wrong and should be criminal.