After you have received an ALS diagnosis, attending an ALS clinic once every few months can improve your quality of life and help you live longer. Clinic visits are typically covered by insurance, and financial assistance may be available. Visit our ALS Clinics page to learn more.
On this page, you will learn:
On this page, you will learn:
- How to find a clinic in your area
- How to schedule your first visit
- What to do if there isn’t a clinic near you
- How to make the most of your clinic visits
How to find an ALS clinic near you
|
We have merged our ALS Clinics Directory into the following ALS Clinic Locator, which is the most current and comprehensive directory of ALS clinics in the U.S. and around the world. Watch this video to learn how you can use the tool to find a clinic near you. For a better user experience, we suggest using the Locator on a laptop or desktop computer.
|
|
Pat Dolan is a GIS mapping technology professional living with ALS who has used his expertise to create online tools that benefit the entire ALS community. Pat and his team, The Mappers, developed the ALS Clinic Locator. Learn more at GeoALS.
How to Schedule Your First Appointment
Before attending an ALS clinic, you will need to schedule an appointment to see one of the clinic neurologists in order to receive or confirm your ALS diagnosis. If you have a confirmed diagnosis, the doctor will schedule your first clinic appointment.
When you first call, you may reach the ALS clinic coordinator directly. If you are routed to a hospital front desk, ask for the doctor, ALS clinic, or neurology department. If you are unable to connect with the right person, try contacting your local ALS organization for assistance.
Every clinic is different. Most accept Medicare and Medicaid, though private insurance coverage will vary. Once you're talking with the person who schedules appointments for the ALS clinic, ask:
If you are concerned about cost, ask the ALS clinic or your local ALS organization if there is any financial assistance available.
When you first call, you may reach the ALS clinic coordinator directly. If you are routed to a hospital front desk, ask for the doctor, ALS clinic, or neurology department. If you are unable to connect with the right person, try contacting your local ALS organization for assistance.
Every clinic is different. Most accept Medicare and Medicaid, though private insurance coverage will vary. Once you're talking with the person who schedules appointments for the ALS clinic, ask:
- Do I need a doctor's referral or confirmed diagnosis to schedule an appointment?
- Do you accept my private insurance/Medicare/Medicaid?
- Do you have an estimate of what I might need to pay out of pocket?
If you are concerned about cost, ask the ALS clinic or your local ALS organization if there is any financial assistance available.
What if I live far from the nearest clinic?
|
If at all possible, it is best to get diagnosed by a neurologist who specializes in ALS and then have one or more in-person clinic visits with a team of ALS specialists. This way you can establish a general care plan and have the ability to reach out to your clinic coordinator with questions or concerns. If the clinic offers telemedicine, you may be able to schedule virtual visits with the same medical team.
|
|
If you cannot attend a clinic in person, ask your ALS neurologist or local ALS organization if they can recommend a general neurologist or medical team closer to you. Ideally, you will find professionals who are willing to learn about ALS and coordinate with your ALS clinic team.
What if I don’t have transportation?
If you do not have a way to get to the clinic, ask your local ALS organization and clinic if they have a transportation program that could provide financial assistance. They may also be able to help you identify accessible transportation options in your area. If you are unable to travel to the clinic due to health, safety, or logistical reasons, try to find a medical professional near you who can monitor your health and possibly make home visits. You may also be able to receive guidance from ALS specialists virtually through telemedicine.
How to make the most of your clinic visits
Before Your Visit
During Your Visit
After Your Visit
- Ask a family member or friend to accompany you to your appointments. Having another person there to listen and take notes can be helpful.
- If you need transportation, arrange it ahead of time. You can look into ride services and public transportation options or ask your local ALS organization if they have travel grants or other suggestions.
- If you haven’t already developed a system for taking notes and staying organized, figure out what will work best for you to keep everything in one place (i.e. using your phone or having a physical notebook or binder).
- Because you will have limited time with each specialist, write down your questions ahead of time about symptoms, equipment, or anything else.
- If you have questions about any device that you already have, such as a brace or respiratory device, it can be helpful to bring it to your appointment.
- Before your first appointment, make sure you have directions and instructions about parking, how to find the clinic office, etc.
During Your Visit
- Specialists will take turns rotating through your room to see you. Have updates and questions ready for each professional as needed. Do not hesitate to mention or ask about anything that concerns you.
- During visits with your team, it can be hard to absorb everything in real time. Taking notes can help you remember details once you’re home.
- During clinic visits, primary caregivers can ask to speak with the social worker or another team member privately to discuss any personal challenges or concerns.
After Your Visit
- Shortly after your visit, your medical team will meet as a group to discuss your situation and make recommendations for care and equipment. You should receive a summary of their recommendations.
- If you have questions about how to follow the recommendations, contact the clinic coordinator.
- It may be helpful to share your notes and/or the team's recommendations with loved ones so that everyone is on the same page.
- If a new question or concern arises between visits, do not hesitate to contact your clinic coordinator.
- It is important that you feel comfortable with every member of your ALS clinic team. If you have any concerns, talk with the clinic coordinator or the representative from your local ALS organization.
- Continue to jot down updates and questions for your next clinic visit.
