|
Attending an ALS clinic may be the single most important thing you can do to improve your quality of life.
Below you will find contact information for ALS clinics in New York, as well as tips for contacting them, scheduling an appointment, and preparing for a successful first visit. Military veterans: You will also want to read about ALS clinics at the VA. |
|
how to contact a clinic
– Some clinics allow you to schedule an appointment online, but most require you to call. Due to patient privacy laws and concerns, most clinics will not email with you. After you register, though, you can often communicate through their online patient portal
– When you call, you may reach the ALS clinic coordinator directly, or you may be routed to the hospital front desk. Ask for the ALS clinic, or the neurology department.
– If you are unable to speak with the right person, check the listing to see if the clinic is affiliated with The ALS Association or Muscular Dystrophy Association. If so, contact your local chapter for assistance.
– When you call, you may reach the ALS clinic coordinator directly, or you may be routed to the hospital front desk. Ask for the ALS clinic, or the neurology department.
– If you are unable to speak with the right person, check the listing to see if the clinic is affiliated with The ALS Association or Muscular Dystrophy Association. If so, contact your local chapter for assistance.
Questions to ask
Every clinic is different. Some require a doctor's referral or proof of diagnosis before you can schedule an appointment. 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 proof of diagnosis to schedule an appointment?
– Do I need to be registered with The ALS Association or Muscular Dystrophy Association in order to schedule an appointment?
– Do you accept my 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 if there is any financial assistance available and talk with your local ALS Association or Muscular Dystrophy Association chapter.
– Do I need a doctor's referral or proof of diagnosis to schedule an appointment?
– Do I need to be registered with The ALS Association or Muscular Dystrophy Association in order to schedule an appointment?
– Do you accept my 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 if there is any financial assistance available and talk with your local ALS Association or Muscular Dystrophy Association chapter.
Tips for a successful visit
Before your visit
– Arrange for transportation to the clinic well ahead of time. Ask a family member or friend to drive and stay with you during the entire appointment. You can also investigate ride services and public transportation options or ask your local ALS Association or Muscular Dystrophy Association chapter if they have travel grants or other suggestions.
– In the time before your appointment, make a complete list of any questions you have about physical symptoms, mental health concerns, equipment, or anything else.
During your visit
– If your appointment is at a large hospital, ask at the front desk for the ALS clinic. If they do not know about the clinic, give the name of the clinic's medical director, or ask for the neurology department.
– During your visit, specialists will rotate to see you individually. Have questions ready for each person, as needed. Do not hesitate to ask anything that concerns you.
– If a family member or friend is with you, ask him or her to take notes. During doctor visits, it can be hard to absorb everything in real time. If you are alone and able to take notes, it will help you remember details between visits.
– During the visit, primary caregivers can ask to speak with the social worker independently to discuss challenges or concerns.
– Before leaving, schedule your next appointment and make sure you have an easy way to contact the clinic coordinator, who is often the nurse or social worker.
After your visit
– Your medical team will meet as a group to discuss your situation. After your visit, they will contact you with recommendations for care and equipment.
– It is usually wise to follow their recommendations. Your team of experts has seen thousands of ALS patients and is making these suggestions to improve your quality of life.
– If you have questions about how to follow the recommendations, call your clinic coordinator.
– You may wish to share your notes and/or the team's recommendations with loved ones so that everyone is on the same page.
– If a question or concern arises between visits, do not hesitate to call your clinic coordinator.
– Jot down any questions you have for your next visit.
– Arrange for transportation to the clinic well ahead of time. Ask a family member or friend to drive and stay with you during the entire appointment. You can also investigate ride services and public transportation options or ask your local ALS Association or Muscular Dystrophy Association chapter if they have travel grants or other suggestions.
– In the time before your appointment, make a complete list of any questions you have about physical symptoms, mental health concerns, equipment, or anything else.
During your visit
– If your appointment is at a large hospital, ask at the front desk for the ALS clinic. If they do not know about the clinic, give the name of the clinic's medical director, or ask for the neurology department.
– During your visit, specialists will rotate to see you individually. Have questions ready for each person, as needed. Do not hesitate to ask anything that concerns you.
– If a family member or friend is with you, ask him or her to take notes. During doctor visits, it can be hard to absorb everything in real time. If you are alone and able to take notes, it will help you remember details between visits.
– During the visit, primary caregivers can ask to speak with the social worker independently to discuss challenges or concerns.
– Before leaving, schedule your next appointment and make sure you have an easy way to contact the clinic coordinator, who is often the nurse or social worker.
After your visit
– Your medical team will meet as a group to discuss your situation. After your visit, they will contact you with recommendations for care and equipment.
– It is usually wise to follow their recommendations. Your team of experts has seen thousands of ALS patients and is making these suggestions to improve your quality of life.
– If you have questions about how to follow the recommendations, call your clinic coordinator.
– You may wish to share your notes and/or the team's recommendations with loved ones so that everyone is on the same page.
– If a question or concern arises between visits, do not hesitate to call your clinic coordinator.
– Jot down any questions you have for your next visit.
Albany Stratton VA Medical Center113 Holland Avenue
Albany, NY 12208 |
|
The Eleanor and Lou Gehrig ALS Center
Columbia University Medical Center – Department of Neurology
710 West 168th Street
New York, NY 10032
710 West 168th Street
New York, NY 10032
Phone: (212) 305-1319
Medical Director: Neil Shneider, MD, PhD
Affiliation: Muscular Dystrophy Association
Visit website
Medical Director: Neil Shneider, MD, PhD
Affiliation: Muscular Dystrophy Association
Visit website
James J. Peters VA Medical Center130 West Kingsbridge Road
Bronx, NY 10468 |
|
ALS Association Program at the Hospital for Special Surgery
525 East 71st Street
New York, NY 10021
New York, NY 10021
Phone: (212) 774-2361
Contact: Mona Shahbazi, MSN, NP, BC-NP, OCN
Medical Director: Dr. Dale J. Lange
Affiliation: The ALS Association
Visit website
Contact: Mona Shahbazi, MSN, NP, BC-NP, OCN
Medical Director: Dr. Dale J. Lange
Affiliation: The ALS Association
Visit website
MDA/ALS Center at University of Rochester Medical Center
Neurology Outpatient Clinic
Strong Memorial Hospital, 1st Floor, AC-1
601 Elmwood Avenue
Rochester, NY 14642
Strong Memorial Hospital, 1st Floor, AC-1
601 Elmwood Avenue
Rochester, NY 14642
Phone: (585) 275-2559
Medical Director: Charles A. Thornton, MD
Affiliation: Muscular Dystrophy Association
Visit website
Medical Director: Charles A. Thornton, MD
Affiliation: Muscular Dystrophy Association
Visit website
Mount Sinai Beth Israel
Mirken Department of Neurology
10 Union Square East
New York, NY 10003
10 Union Square East
New York, NY 10003
Phone: (212) 844-6188
Medical Director: Stephen Scelsa, MD
Affiliation: The ALS Association
Visit website
Medical Director: Stephen Scelsa, MD
Affiliation: The ALS Association
Visit website
Stony Brook University Hospital ALS Center
181 Belle Meade Road, Suite 5
East Setauket, NY 11733
East Setauket, NY 11733
Phone: (631) 444-2599
Medical Director: Rahman Pourmand, MD
Affiliation: The ALS Association
Visit website
Medical Director: Rahman Pourmand, MD
Affiliation: The ALS Association
Visit website
St. Peter’s ALS Regional Center, Lewis Golub MDA/ALS Clinic
19 Warehouse Row
Albany, NY 12205
Albany, NY 12205
Phone: (518) 525-1629
Contact: Kathie DeCarr
Medical Director: Roberta Miller, MD
Affiliation: Muscular Dystrophy Association
Visit website
Contact: Kathie DeCarr
Medical Director: Roberta Miller, MD
Affiliation: Muscular Dystrophy Association
Visit website
SUNY Upstate Medical University
Department of Neurology
90 Presidential Plaza
Syracuse, NY 13202
90 Presidential Plaza
Syracuse, NY 13202
Phone: (315) 464-4243
Medical Directors: Ahmed El Dokla, MD and Eufrosina I. Young, MD
Affiliations: The ALS Association and Muscular Dystrophy Association
Visit website
Medical Directors: Ahmed El Dokla, MD and Eufrosina I. Young, MD
Affiliations: The ALS Association and Muscular Dystrophy Association
Visit website
What if there isn't a clinic near me?
|
Attending an ALS clinic—once every two or three months—may be the single most important thing you can do to extend your life and improve your quality of life. If you are able to make the drive or arrange for transportation, we strongly recommend going.
If there is not a multidisciplinary ALS clinic near you, there may be other clinics or neurologists at hospitals, private practices, or universities who specialize in ALS. Contact your local ALS Association or Muscular Dystrophy Association chapter to ask about your options. You may also want to search for clinics in neighboring states that may be closer to you. If transportation to the clinic is a challenge, ask your local chapter if they have travel grants, resources, or suggestions. |
Did we miss something?Is there an ALS clinic we missed? Is any information out of date? Email us to help keep the directory current. Thank you! |
