He may not be the first or even the most famous Lou to live with ALS, but Louis Hall is making a name for himself when it comes to advocating for many living with the disease.
ALS itself has many names. It is an acronym for amyotrophic lateral sclerosis. Worldwide, it is called motor neuron disease. Here in the U.S., its colloquial reference is Lou Gehrig’s disease, after the famous New York Yankees baseball star who died two years after his diagnosis.
On average, life expectancy for ALS is two to five years. Lou first started noticing symptoms seven years ago. It began with a hoarseness in his throat. He went to his doctor who at first thought it might be gastric reflux. Upon further examination, another doctor thought it might be from a nodule on his vocal cord. The nodule was removed, but his symptoms persisted and got worse. And then his speech started to slur. Lou’s wife, Tammy, is a nurse, and she was determined to find out why.
The Halls went to many doctors. Some didn’t have any answers. Some had the wrong answers. And still, the Halls continued to see new specialists and get second opinions. Then in 2020, they finally met a doctor who confirmed the correct diagnosis.
“He said, ‘I think you have ALS,’” recalls Lou. “And I said what can we do about it? I was vaguely familiar with it and I knew there was no cure, but I asked the question anyway.”
For Lou and the approximately 9.1 cases per 100,000 people living with it, the news was devastating. The disease attacks cells in the nervous system - the brain and the spinal cord. It starts “focally” or in one spot, but then progresses to other areas of the body. It specifically targets voluntary muscles including the muscles that control breathing and swallowing.
Since ALS is relatively rare, it is not well understood, much less easily identified by even neurologists. That’s why it is so important to have ALS Certified Treatment Centers. There are only three Treatment Centers of Excellence in North Carolina and two are in the Atrium family - the Atrium Health Wake Forest Baptist ALS Center in Winston-Salem, and the Atrium Health ALS Center in Charlotte, part of the Atrium Health Neurosciences Institute.
Once Lou was correctly diagnosed, the Halls sought care close to their home in Charlotte with Atrium Health.
“The ALS Center is an interdisciplinary center,” says Dr. Leo McCluskey, medical director of the Atrium Health ALS Center in Charlotte. “Patients are seen by a whole team - neurologists, a nurse coordinator and multiple nurses, medical assistants, a physical therapist, occupational therapist, speech therapist, nutrition and social service. Then once a month, we have a physical medicine rehab physician and a pulmonologist. Since the disorder is quite variable, the patients see the specialists based on their specific needs.”
McCluskey says the goal of the center is to help patients continue to live their lives as fully as possible. The staff will engineer a motorized wheelchair to fit the needs of the patient, for example. Or if a patient misses fishing or mowing his lawn, McCluskey says the occupational therapist will work diligently to try to achieve these goals despite their limitations. This one-stop shop model for an ALS clinic is extremely unique, something that the Halls fully appreciate, along with McCluskey’s personal approach to Lou’s care.
“He actually gets to know his patients and their families. You can tell he cares,” says Tammy. “So before he ever starts talking to us about ALS, he wants to know how we have been doing and what’s been going on with us.”
“He also keeps us up to date on the latest drugs, and he is very knowledgeable,” adds Lou. “Most importantly, we just like him.”
The feeling is mutual. McCluskey not only respects Tammy’s medical background, but also Lou’s mind. As an architectural engineer forced into retirement by his disease, Lou still has quite a bit to offer.
“Lou has an engineering sort of mindset. He’s organized in the way he thinks about things,” says McCluskey. “I really like them a lot.”
This mutual respect has now carried over to a new relationship between McCluskey and the Halls. McCluskey spent years trying to understand why there is such a disproportionate number of African Americans who go undiagnosed with ALS compared to the general population. He first noticed it in Philadelphia where he once worked, and then in other places in the U.S. The Halls have also noticed it. While so much of the disease remains a mystery, this is something that they all believe could be fixed.
McCluskey believes that the Halls had the resources, the knowledge and the persistence to receive a correct diagnosis, and yet it took them years to get ALS confirmed. As a result, Lou endured many unnecessary procedures, doctor’s visits and expenses. This is common with ALS patients, but particularly in the African American population.
“It’s important to get an early diagnosis so you can start treating your symptoms and have a more comfortable life,” says McCluskey.
Now the Halls and McCluskey have started to team up to battle not only the misinformation but also the lack of information that is available to the African American community, along with the population at large. They’ve done a radio show together. And Lou has been invited to speak in Washington, D.C., for an Advocacy on the Hill event during ALS Awareness Month in May.
Both the Halls and McCluskey point out many factors that could create a disparity among the African American population including transportation, education or even fear of speaking out.
“We’re in the process of trying to marry data from Atrium Health to North Carolina to confirm if there is a disparity here,” says McCluskey. “If it really is societal, then it is potentially completely fixable.”
If you and your physician suspect you may have ALS, you can reach out to the Atrium Health ALS Center in Charlotte at 704-468-0101 or the Atrium Health Wake Forest Baptist ALS Clinic at 336-716-4101. Please mention this article and request to speak with the neuromuscular program coordinator.
