I believe it is important to work closely with a multidiscilplinary team to ensure that all needs of the client (PALS and family both included) are being met.
Hi;
I am a RN and now a person with ALS X 7 years now. I used to work at the Toronto General Hospital in Urology and the Neurosurgical ICU, then I worked in the Urology outpatient's clinic at Sunnybrook in Toronto, then I moved back home to work in the community and the emergency department at the local hospital. So from my professional and personal experience the best thing you can do is read the ALS Healthcare Professional Handbook, this will definitely outline your role in the nursing care of a patient with ALS. Here is the web link is; http://www.als.ca/caregiver/care_resources.aspx
You could also get in contact with the nurse coordinator of the ALS Clinic that the patient attends. Also remember that if you are in a rural isolated area, may require the nurse to expand her role in the order to meet the patient with ALS care needs. The ALS society in your respective province would be very helpful, as well.
Patsy
