Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting. I was diagnosed with Bulbar Palsy in July 2016. Bulbar Palsy is a result of a number of different diseases, one of which is ALS (Lou Gehrig's Disease). It was finally determined that in fact, I had ALS July 2017. Apparently, it is what is referred to as Sporadic as opposed to Genetic (meaning that I would be passing it on to my children). There is also various manifestations and speeds with which the ALS degenerates your system. Seemingly, mine is on what they refer to as slow progression. I have seen patients go downhill in a matter of months and there is a member of our support group who has had ALS for 20 years and then there is Stephen Hawking who has lived with it for 50 some years.
Amyotrophic lateral sclerosis (ALS), more commonly referred to as Lou Gehrig’s disease, is a progressive neurodegenerative disease that attacks nerve cells and pathways in the brain and spinal cord. When these cells die, voluntary muscle control and movement dies with them. Patients in the later stages of the disease are sometimes totally paralyzed, yet in most cases, their minds remain sharp and alert.
The average life expectancy of a person with ALS is two to five years from time of diagnosis. With recent advances in research and improved medical care, many patients are living longer, more productive lives. Half of all those affected live at least three years or more after diagnosis. About 20 percent live five years or more, and up to ten percent will survive more than ten years.