Making the Most of Your ALS Clinic Visit

At the Lois Insolia ALS Clinic at the Les Turner ALS Center at Northwestern Medicine, you will receive care from a multidisciplinary team with extensive experience in diagnosis and treatment of ALS. During your visits, you will be able to see all members of your care team in one visit, as needed. People with ALS who participate in a multidisciplinary clinic generally report a high level of satisfaction with their care, stay healthier and have improved health care outcomes.

Your ALS care team is made up of specialists in:

Neurology

Pulmonology

Nursing

Clinical trial coordination

Genetics

Nutrition

Physical therapy/ Occupational
therapy

Speech
therapy

Social
worker

Les Turner ALS Foundation Support Services Team

Each member of the team will answer any questions including assessment, care planning, education, clinical trials and other healthcare needs. During your visit, you may also be seen by medical residents and fellows.

Learn more about parking and getting to the clinic.
Bring your parking ticket to your clinic visit and present it to a Les Turner ALS Foundation representative or clinic nurse for a complimentary voucher. Please note whether you have parked in the A, B, C, or D lot so that you receive the correct voucher. Do not allow Northwestern staff to validate your ticket as you will not receive free parking.

You should plan to spend around three to four hours at clinic. Make sure to pack snacks, drinks, and any medications you may take in the afternoon.

A food court is located on the second floor of the Lavin Pavilion and other dining options can be found throughout the Northwestern Medicine campus and in the surrounding area. A full list of services can be found on the Northwestern Medicine website.

We encourage you to bring a dedicated family member or friend to your visit, but we kindly ask that you limit the number of people visiting with you to 1-2 people.

Communicating with your ALS care team

The goal of visits with your ALS care team is to understand what is happening with your health so that you can make informed choices. We encourage you to be proactive with your questions and concerns.

If you don’t understand what is being discussed, ask for clarification.

Discuss your needs with your ALS care team.

Involve your family and friends in the conversation.

If you have questions about clinical trials and research, talk it over with your ALS care team.

You will receive recommendations from your ALS care team but remember that you are the expert in your own life. It’s important to voice your feelings and concerns so you can make the treatment decisions that are right for you.

Preparing in advance to make the most of your clinic visit

Clinic visits provide a lot of information. It can feel overwhelming and it can be difficult to remember specific questions for your care team. We encourage you to prepare in advance by making lists of the different ways ALS is impacting you and writing down specific questions. We suggest bringing a notebook and pen and asking a family member or friend to take notes.

Here are some lists and questions to consider when preparing for your visit:

List the different ways ALS is impacting your daily activities.

List the changes you or others have noticed in your body, speech, swallowing, breathing, or thought processes.

List when these changes occur most frequently and what helps alleviate them. While some of these changes may be difficult or uncomfortable to acknowledge, this is valuable information for your care team and will improve the care you receive.

List your medications and supplementations. Have you made changes to the medications? Are you experiencing side effects?

Questions to ask:

1 What are the FDA approved medications for ALS?

2 Are there clinical trials and research studies that might be appropriate for me?

3 What can I learn from genetic testing?

4 What are some suggestions for maintaining my weight?

5 How does ALS affect breathing?

6 How much and what type of physical activity can I do?

7 What are some things I can expect as my ALS progresses? How can I best plan for these changes?

8 What are some options for recording my voice?

9 Is there anything else I can be doing to help with my ALS?

10 Where can I find additional help?

How to schedule follow-up clinic visits and communicate with your Lois Insolia ALS Clinic team

You will visit with your Lois Insolia multidisciplinary ALS care team approximately every three months. After your initial visit, you may be scheduled for a six-week follow-up visit.

To schedule follow-up visits, stop by the registration desk as you are leaving, or call 312.695.7950 (Please let the clinic team know if you require interpreter services prior to your visit.)

Your MyNM | Northwestern Medicine patient portal is a convenient way to manage your appointments, access your records, and communicate with your Lois Insolia ALS Clinic team in between your visits.

Feel free to share your list of questions with your team members via the portal prior to your visit.

My ALS Communication Passport to Quality Care

Looking for in-depth information about ALS symptoms and care options?

Les Turner ALS Foundation has you covered. We’ve created guides about key topics like nutrition, communication, mobility, and more. Learn more.

Learn more about ALS Clinical Research

There are several ongoing clinical trials in ALS that have the potential to slow down disease progression and/or manage symptoms. We encourage you to talk with your doctor about deciding to join a study that may be right for you. Clinical research in ALS at the Les Turner ALS Center at Northwestern Medicine encompasses a broad range of work, including biomarker studies, open label therapeutic studies, natural history studies and clinical trials.

To learn more about ALS clinical research, visit Northeast Amyotrophic Lateral Sclerosis Consortium.

My ALS Communication Passport to Quality Care

was created to make your life easier. You will be able to share health information and care preferences. You have a lot of information to keep track of, and this tool will help you do that. To find out more, visit: https://lesturnerals.org/passport

Care. Community. Cure.

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