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 a caregiver or family member). 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 and as long as you can
ALS ( also known as Lou Gehrig’s disease) is a fatal neurodegenerative disease. People living with the disease become progressively paralyzed due to degeneration of 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 NB and NS. 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 someday find a cure. In the fall of 2015, we are bringing to Phase ll Clinical trial a drug by the name of Pimozide that we hope will slow progression of ALS.
Many people living 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.