Before you read any further, please know that the ALS Society of New Brunswick and Nova Scotia is here to help you cope with both the physical and emotional challenges you will face as someone living with ALS (or as the caregiver or family member of someone living with ALS). The following information is going to be difficult. But remember, knowledge is power and acceptance of the facts is going to help us help you live your best life as well as you can as long as you can.
Amyotrophic Lateral Sclerosis (also known as Lou Gehrig’s disease) is a fatal neurodegenerative disease. People living with the disease become progressively paralyzed due to degeneration of the upper and lower motor neurons in the brain and spinal cord. The majority of people living with ALS have a life expectancy of 3 – 5 years. However, increasingly people are living longer and we have many examples of this in New Brunswick and Nova Scotia. The ability to adapt, good family support, and early acceptance of intervention and equipment may help you live longer.
At the present time, there is no treatment that significantly prolongs life for people living with ALS. Researchers are investigating ways to reverse the disease, and there may eventually be a cure for ALS.
In the fall of 2015, we are bringing to Phase II Clinical trial a drug by the name of Pimozide that we hope will slow progression of ALS.
Many people with ALS say that they live life more fully with much joy – even knowing what is to come. Good planning for medical and social management will enhance the quality of life for both the person with ALS and their family members.