|
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 Florida, 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.
Central Neurology
2201 Central Ave. Suite 200
St. Petersburg, FL 33713
St. Petersburg, FL 33713
James A. Haley Veterans' Hospital13000 Bruce B. Downs Blvd.
Tampa, FL 33612 |
|
Mayo Clinic Florida
Department of Neurology
4500 San Pablo Road
Jacksonville, FL 32224
4500 San Pablo Road
Jacksonville, FL 32224
Phone: (904) 953-2000
Medical Director: Dr. Bjorn Oskarsson
Affiliation: The ALS Association
Visit website
Medical Director: Dr. Bjorn Oskarsson
Affiliation: The ALS Association
Visit website
Lee Health ALS Clinic
Outpatient Center at Plantation
13601 Plantation Road
Fort Myers, FL 33912
13601 Plantation Road
Fort Myers, FL 33912
Phone: (239) 343-0763
Clinic Coordinator: Carol
Medical Director: Dr. Wendy Bond
Affiliation: The ALS Association
Visit website
Clinic Coordinator: Carol
Medical Director: Dr. Wendy Bond
Affiliation: The ALS Association
Visit website
Miami VA Healthcare System1201 N.W. 16th St.
Miami, FL 33125 |
|
North Florida/South Georgia Veterans Health System Malcom Randall VA Medical Center
|
1601 SW Archer Road
Gainesville, FL 32608 |
|
UF Health Multidisciplinary Clinic
580 West 8th Street – Tower 1, 9th floor
Jacksonville, FL 32209
Jacksonville, FL 32209
Phone: (904) 244-9922
Contact Person: June Solomons
Medical Director: Dr. Michael Pulley
Visit website
Contact Person: June Solomons
Medical Director: Dr. Michael Pulley
Visit website
University of Miami Kessenich Family ALS Center
Professional Arts Center Building, Medical Campus
1150 NW 14th Street, Suite 609
Miami, FL 33136
1150 NW 14th Street, Suite 609
Miami, FL 33136
Phone: (800) 690-2571, (305) 243-7400
Clinic Coordinator: Gina Gonzalez, DNP, ARNP
Medical Directors: Michael Benatar, MD, PhD and Ashok Verma, MD, DM, MBA
Affiliations: The ALS Association and Muscular Dystrophy Association
Email the clinic for an appointment
Visit website
Clinic Coordinator: Gina Gonzalez, DNP, ARNP
Medical Directors: Michael Benatar, MD, PhD and Ashok Verma, MD, DM, MBA
Affiliations: The ALS Association and Muscular Dystrophy Association
Email the clinic for an appointment
Visit website
University of South Florida ALS Clinic
Morsani Advanced Health Center
13330 Laurel Dr.
Tampa, FL 33612
13330 Laurel Dr.
Tampa, FL 33612
Phone: (813) 974-9273
Medical Director: Tuan Vu, MD
Associate Director: Jerrica Farias
Clinic Coordinators: Natalie Tucker, EMG/NCV Technician and Brittany Harvey, Research Support Specialist
Affiliation: The ALS Association
Visit website
Note: You do not need a referral to attend this clinic.
Medical Director: Tuan Vu, MD
Associate Director: Jerrica Farias
Clinic Coordinators: Natalie Tucker, EMG/NCV Technician and Brittany Harvey, Research Support Specialist
Affiliation: The ALS Association
Visit website
Note: You do not need a referral to attend this clinic.
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! |
