We know that traveling to multiple appointments can be difficult, so we brought together different specialists under one roof to streamline care into a single day. During your visit, you will meet with each of our ALS experts, who will address your needs. You will stay in the same room for the duration of your visit, which can be three to four hours long.

You will meet with all team members except the genetic counselor, pulmonologist and respiratory therapist. These visits can be arranged later as needed.

We highly recommend you bring a family member/caregiver to your appointment. We can accommodate up to three extra people (exceptions can be made for more people).

Our patients have clinic visits approximately once every three to four months.

For your convenience, we also offer telemedicine appointments for follow-up visits. Patients must be in Maryland during the visit but do not need to be Maryland residents. You will need a private space and a supported device (personal computer, laptop, desktop or tablet) equipped with a camera. You will see and hear your physician, and the physician will see and hear you and anyone in the room with you. Your physician will be able to visually assess you, answer questions and make care recommendations. Each visit is about 30 minutes long and can replace an in-office follow-up visit.

By offering this flexible appointment option, we hope to:

• Reduce cost and difficulty of travel
• Eliminate the need to take time off from work
• Allow your physician to see how you are doing in your home
• Offer more flexible dates and times than regular clinic visits
• Allow for multiple family members to join, even from different locations

We understand that telemedicine is not suitable for everyone. For more information, and if you want to schedule a telemedicine visit, contact our medical office coordinator, Destiny Burton, at [email protected] or 410-614-1196.

During every visit, you will get:

• A breathing test to measure how well your lungs are functioning (available only during in-person visits)
• The ALS Functional Rating Scale assessment, which helps us understand how well you are functioning
• The Center for Neurologic Study-Lability Scale assessment, which helps us determine if you are having uncontrollable laughing our crying
• ALS-Depression-Inventory assessment, which helps us understand your mood and state of mind

Our team will create a care plan tailored to your needs. We offer a range of support and treatment options, including the following.

• Medications: There are currently two medications approved by the U.S. Food and Drug Administration that we prescribe to our patients: riluzole and edaravone.
• Assistive devices: As the need arises, our team will make recommendations for assistive devices such as wheelchairs, communication aids and respiratory support.
• Clinical trials: We will talk to you about available clinical trials and evaluate whether you are a candidate.
• Other therapies

Resources:

• Managing Symptoms of ALS guide (PDF)
• View more guides and an option to order free printed versions
• Visit our ALS clinical trials unit website
• See information about all open ALS clinical trials at Johns Hopkins

While we don’t have a counselor or psychologist on our team, Ambereen Kurwa Mehta, M.D., M.P.H., is experienced in helping tackle the emotional distress that comes with an ALS diagnosis. We can also refer you to a therapist.

Care partners play important roles during the ALS journey. We welcome and encourage their involvement. Feel free to invite your care partners to your appointments. Our team will work with your loved ones to be sure their concerns are addressed.

JinAe Arneklev, M.S.N., will make referrals and help coordinate care for you. She works closely with various practitioners and other service providers to make sure your needs are met.