ALS Center

Amyotrophic lateral sclerosis is also known as ALS or Lou Gehrig’s disease. This is a disease of the nerve cells in the brain and spinal cord that control muscle movement. ALS is a progressive disease that currently has no cure.

As part of our commitment to you, the neurology team with Lehigh Valley Health Network (LVHN) ALS Center will provide a definite diagnosis and will offer comprehensive care to help you live with ALS as normally as possible and have a better quality of life.

Please call 888-402-LVHN (5846) to schedule an appointment or learn more about LVHN ALS Center.

What to expect at your first visit to LVHN ALS Clinic

Patients coming to us for the first time see a neurologist who is an expert in ALS. The goal is to be as sure as possible about a diagnosis.

After doing a series of tests, including neurologic diagnostic testing, the neurologist will make an appointment with you, your family and other caregivers to talk about the diagnosis. If you have ALS, the doctor will give information such as medication options and clinical trials.

An ALS nurse specialist is often at that visit as well. The neurologist and nurse work with you and your family on a plan to treat the disease and manage symptoms.

Follow-up visits

Patients with ALS are seen about once every three months in our multidisciplinary clinic, which includes various specialists on our team. During these appointments, you and your family stay in one examining room for about three to four hours while the different team members meet with you.

At these visits, you will always have your weight and breathing capacity measured and see the neurologist and nurse. You will also see some (or all) of these team members, depending on the issues you may have at the time of the visit: 

• Physical therapist
• Occupational therapist
• Speech therapist
• Registered dietitian 
• Respiratory therapist
• Neuropsychologist
• Social worker
• ALS Association (ALSA) social worker

Role of your primary care provider

Your primary care provider is still an integral part of your health care team and is the person to turn to for your other health care needs. We keep your primary care physician or advanced practice clinician informed about the specialized care you are receiving from LVHN ALS Center. He or she will receive a written update from your neurologist and a summary of what the ALS team recommends.

Goals of LVHN ALS Clinic

We will:

• Serve as a center to diagnose, treat and provide follow-up ALS care.
• Work with your primary care provider as partners in your treatment.
• Focus on special services for patients with ALS and related health problems.
• Take a team approach to help you function to your best ability.
• Give you information about the disease process.
• Offer therapeutic drug trials and information.
• Keep you and your family aware of research options. 

Lehigh Valley Support Group

A support group is held typically every fourth Tuesday of the month at Lehigh Valley Hospital– Cedar Crest. If this is your first time attending or if you have any questions, please contact Wendy Barnes, MSW, with the ALS Association, at 610-797-2102.