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After you have received an ALS diagnosis, it is very important to connect with and attend an ALS clinic. In addition to improving your quality of life, studies have shown that attending an ALS clinic on a regular basis can extend your life by one year or more.
Attending an ALS clinic once every few months means you will have a team of specialists who coordinate your care, make individualized recommendations, and provide ongoing guidance. Your ALS clinic team can help you manage symptoms, recommend medical equipment and assistive devices, educate you about ALS drugs and clinical trials, answer questions between visits, and more. |
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How do ALS clinics work?
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After your diagnosis, your ALS doctor’s office will schedule your clinic appointment. If you have been diagnosed by a neurologist who does not specialize in ALS, ask for a referral to an ALS doctor affiliated with a clinic near you.
About once every three months, you will travel to the clinic to meet with a neurologist, nurse, physical therapist, occupational therapist, respiratory therapist, speech language pathologist, social worker, and other professionals. It is always helpful to have a caregiver, family member, or friend accompany you to help take notes and ask questions. |
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For a few hours, you will stay in the same room while the specialists rotate to visit with you, answer questions, and measure your progress.
At the end of each visit, your team will discuss your individualized care plan and send you a report with care and equipment recommendations. If you have questions or concerns between your visits, do not hesitate to contact the 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.
At the end of each visit, your team will discuss your individualized care plan and send you a report with care and equipment recommendations. If you have questions or concerns between your visits, do not hesitate to contact the 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.
Caregiver Support at Clinics
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ALS clinic teams understand that primary caregivers need support, too. As a caregiver, you can ask questions, call the clinic coordinator between visits, and request to speak separately with the social worker or other members of the team to discuss personal challenges.
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How much does a clinic visit cost?
ALS clinic visits are typically covered by Medicare, Medicaid, and private insurance. If you are concerned about insurance coverage or being able to pay for clinic visits, explain your situation to the clinic coordinator or local ALS organization and ask if financial support is available. Clinics and organizations will try to find a way to make sure that all people living with ALS get the medical care they need.
Military Veterans: Learn about ALS care at the VA
Military Veterans: Learn about ALS care at the VA
What if I live far from the nearest clinic?
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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. |
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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.
