About This Site

I like causes. I’m an ALS junkie. I have been heavily involved with the ALS Assn., doing advocacy in my state capital and in Washington, D.C. and publishing documents for the Association and for the ALS community. I have a blog on the ALS Assn. Website and I’m active in the Yahoo Living with ALS group. Through Yahoo I became familiar with Randy Roberts’ Guidebook. In his guidebook, Randy did a wonderful job introducing ALS to recently diagnosed PALS, their families and caregivers. You can download Randy’s 100-page manual at http://55jer.com/randysalsmanual.htm. Randy’s marvelous gift to the ALS community inspired me to create this website and blog which I hope will complement his work. What I want to do here is address issues faced by mid-term and late-term PALS. I’ve already done a couple of pieces on the impressive support provided by the Veterans Administration to veterans with ALS. They will be included in this blog. I have also designed a series of questionnaires dealing with perhaps the most important decisions PALS and their families face as they navigate through this disease, that is, whether and when to move to invasive ventilation. I have shared these questionnaires with physicians, caregivers, researchers and Association personnel. The questionnaires are wide-ranging and general and therefore serve only as a catalyst for more detailed research. Everything on my blog will be in the public domain and I encourage readers to use any part of the blog as they wish. I’m also hoping that the discusion strings that result from the blog will be extensive and rich and like Randy, I will work them and raise all the latest subjects, which might be added to the blog with attribution.
I would like this blog to be a vehicle to help the ALS community navigate through this disease. The blog will have chapters on the various milestones. I also plan to include a brief review of the literature on the question of moving to the vent. In my blog I am including a list of factors that PALS, family, caregivers might want to consider as they decide whether to resort to invasive ventilation. A lot depends on what stage of the disease you are in when it comes time to decide about the vent. I have been in touch with a wide variety of vent patients, some who have great quality of life and others who’ve had an unhappy experience. My questionnaire raises sensitive questions and some of you may consider them “edgy.” But I think it’s important to consider all aspects of this decision.