Amyotrophic Later Sclerosis — also known as ALS or Lou Gehrig’s disease — is a rare, yet fatal disease that can have subtle onset symptoms not to be overlooked.

About 5,000 new cases of ALS are diagnosed annually in the United States. An ALS diagnosis can be scary, confusing and overwhelming.

In 2019, I was diagnosed with ALS and was inspired to help others facing the same challenges. Therefore, I started my nonprofit Paint For A Cure to provide people resources to navigate this disease.

If you (or someone you know) has received an ALS diagnosis, here are a few questions that I highly recommend that you ask your doctor:

1. What are the symptoms of ALS?

Knowing the general symptoms associated with ALS can help you better understand what to expect during the stages and progression of the disease. Loved ones should also be aware of the symptoms to expect.

Understanding the symptoms can help those diagnosed with ALS and their loved ones learn how to best manage ailments as the disease progresses. Common ALS symptoms include loss of muscle function, weakness, body aches, fatigue, breathing problems and/or difficulty speaking. 

2. Will ALS affect my cognitive abilities?

ALS is a disease of the nervous system that weakens and slows muscle function. Researchers have found that cognitive function is affected in about 35% of patients diagnosed with ALS. It can be difficult to predict which symptoms may or may not be present in each individual case of ALS.

3. What tests need to be done and how can I prepare for them?

ALS does not have a specific diagnostic test, and ALS symptoms are often similar to other diseases. If ALS is suspected, a health care provider may perform one or more of the following procedures to determine if symptoms are caused by ALS, or a different condition with similar symptoms:

• Blood and urine tests: These tests may be used to eliminate any other diseases that the symptoms could be caused from.
• Electromyograms: In this test a medical professional inserts an electrode to detect muscle activity. To prepare, patents should bring someone to drive them to and from their appointment, limit caffeine 2-3 hours before the appointment, and wear loose-fitting clothing.
• Nerve conduction study: This test measures nerve function and if muscle responses are working. Preparation is similar to EMG tests.
• MRI: Allows for medical professionals to see detailed images of the spinal cord and brain. To prepare, wear loose-fitting clothing, avoid putting on any perfumes, deodorants, or metals the day of the appointment. Follow any other specific instructions from your healthcare provider leading up to the appointment.
• Spinal tap: This procedure is sometimes used to detect ALS but is mainly used to diagnose other diseases that could mimic the same symptoms of ALS. If a spinal tap procedure is needed, a medical professional will provide specific details to help prepare for the appointment.

4. What happens after a positive ALS diagnosis?

If ALS is diagnosed, understand that it is OK to feel overwhelmed. Loved ones may also experience grief. There are medications that doctors can prescribe to alleviate the symptoms of ALS.

 Symptoms and progression of ALS will be different in each person that experiences it. Finding a trusted doctor or medical care team, spending time with loved ones, and mental health counseling can help a person best navigate an ALS diagnosis. 

Your doctor is going to be an incredible resource for you, so it’s important to feel comfortable with asking any and all questions you have. If you are in need of any resources or would simply like to connect with an ALS organization, please visit the Paint For A Cure website: paintforacure.org.

About the author: Phoenix resident Eric Weinbrenner was diagnosed with ALS in 2019 and is founder of Paint For A Cure.