Hello! ... and good health to all who visit this site.

Please visit here often for my weekly updates, to read and respond to comments left by myself and other visitors, or to read and respond to the monthly interview. As the name of this site indicates the targeted audience is people who have ALS (PALS), their care givers (CALS), as well as family members and friends of people affected by this neurological condition. I also want to welcome any visitors who might be dealing with a “terminal illness” of any other kind as well.

I want this to be a safe haven, a place where you can come to access information and to offer your thoughts and opinions. But I would also like it to be a place where you can come to relax and even get a good laugh from time to time. Anyone who has been through receiving a diagnosis such as ours knows the constant weight and darkness that can accompany this condition. My belief is that it is very important to step back from the intensity that PALS and CALS live with on a daily basis. My purpose here is to offer hope, to encourage people to continue to live each day despite this serious situation we find ourselves in.

As stated the diagnosis of ALS usually brings with it a devastating blow to a person’s psyche and spirit. This is felt by the person’s family and friends as well. My purpose here is to offer hope and encouragement to all who are affected by this dreaded disease. Not only do we need to live each day well, we need to live with the knowledge that each day brings us one day closer to better medicines, treatments, and yes a cure.

This site places a high premium on supporting each other as we travel this road together. Encouraging each other and interacting with each other is so very important as we all go forward.

What possessed me to create a web site on this difficult topic? Obviously my personal experience with the condition and my instinct to want to help others. (Ok get ready for a bit of a rant. Fast forward past this if you’d like.) But I think there was an even some personal anger involved. Anger at the unfairness of how this disease cuts down innocent people in the prime of their lives. Anger at studying how most diseases, even “terminal” ones, have some built in hope. Hope that stems from having a host of medications and treatments to address the disease presented to them by the medical community. Hope from the sheer numbers of people who have a given disease at any given time. This has not been the case with ALS, truly living up to its “orphan disease” classification. Conventional medicine offers very little to the ALS patient in terms of “medicine”. There is only one FDA approved drug, Rilutek (Riluzole), which has offered modest to no help to PALS since its introduction 10 years ago. In best case scenarios Rilutek may extend a person’s life span 2 or 3 months (you read that correctly, months not years). The drug has also had a bad reputation for harming people’s livers as well. The purpose here is not to bash Rilutek. It is to point out the current lack of support PALS have in the way of treatment by the medical community. In the way of care, things are quite a bit better than this. There is a good deal of support in helping people negotiate the various stages of their disease process. This includes adaptive devices and apparatus that help to make life better and even extend lives. This is a blessing, there is no two ways about it. But a pretty safe bet is that PALS would opt for finding medications and treatments on the front end of their disease process that would help maintain function rather than refine breathing devices and feeding tubes that assist us on the back end. So this site will welcome any and all progress made by conventional medicine. And much progress is currently being made in the laboratories in this country and around the world to this end. But we will also talk about, encourage dialog, and link to topics concerning alternative medicines and treatments.

Ok, let’s get our seat belts fastened and get on with it!