Nothing Vented Nothing Gained

I have long been an advocate for PALS going on a vent. Many opt out for various reasons, one of which is, surprisingly, discouragement from medical professionals. Horror stories of cost and the difficulty of home care are common. I beg to differ with that. Cost can indeed be an issue but with creative financing and the possibility of obtaining long-term care insurance before formal diagnosis, cost can be managed. In terms of home care, with a few simple rules adhered to, the risks of complications are minimal. Up until now I had only my own experience to use as proof of my contrarian view. It turns out I was correct all along. In a study of over 100 PALS 78 were recommended for tracheotomy. 38 underwent the procedure. Of those, the one-year survival rate was approximately 80% (the same as lung transplant) and only one died from respiratory causes. As the study noted: "Nowadays, starting [home venting] should no longer necessarily be considered as the beginning of the end for these patients. When the appropriate medical resources are in place and the patients wish to continue living, the old mentality of focusing only on palliative care which is still common in the management of this disease must make way for high technology and compassionate care." Vents today are about the size of a grammar school student's backpack and very quiet. Assisted Communication Computers are covered by insurance and Medicare and are very easily converted to general-use Internet-capable computer systems. Web-based social media platforms give unprecedented communication and social access to today's PALS. I have cheated The Reaper for 4 years now and others have for longer. In my view the old bastard can piss off until I am good and ready to go. My quality of life is what I make of it. Technology is my friend and has been for most of my life. As the esteemed Steve Saling says, "Until medicine arrives, technology is the cure." I believe this and urge all PALS to use technology to win the battle against ALS until medicine provides the final victory.