- If at all possible, get connected with a knowledgeable, experienced neuro-muscular specialist and a comprehensive, multi-disciplinary ALS clinic. Many of us in the Rochester, NY area attend the ALS clinic at the Neuromuscular Disease Center at the University of Rochester Medical Center (URMC): https://www.urmc.rochester.edu/neurology/clinical-services/neuromuscular/clinics/als.aspx
- Keep lines of communication open with your medical team. As a patient at URMC, I have the online MyChart system which allows me to send/receive electronic messages directly to/from my neurologist, therapist, etc., similar to email. I don't have to wait for a clinic visit, or play "phone tag" when I want to ask a question or get information. MyChart also gives me direct access to test results as soon as they are released. https://www.urmc.rochester.edu/patients-families/mychart.aspx
- Understand what your insurance covers, especially related to durable medical equipment, various types of home health care, and various types of treatments - prescription drugs, as well as supplements. The customer service team at your insurance provider should be able to get you this information. Know what coverage you have before you receive care.
- Be (or get) informed. The internet has plenty of information that can be helpful in learning about the disease, symptoms, treatments, etc.