I have familial ALS. I was first diagnosed with Charcot-Marie-Tooth disease in 1995, but when my son started to develop symptoms, the neurologist meant that the diagnosis given to my mother, my brother and me was ALS. We have lived with this disease in the family for generations.
Today, I’m 71 years old and I have managed the diagnosis ok, although large physical functional impairment. I have invested a lot of my time engaging for a better life for people with functional impairment. I was four years in the municipality board and 12 years in the municipality council working for the rights of people with functional impairment. Furthermore, I have been involved in user-controlled personal assistance, which is a Norwegian arrangement for organising practical assistance and training for people with substantial long-term needs for personal assistance.