In 2022, Oscar-winning actress Sandra Bullock announced she was taking a break from the acting biz, citing that she wanted to spend more time with her family. “The Blind Side” star told “Entertainment Tonight” that she needs to be “in the place that makes me happiest,” adding, “And I just want to be 24/7 with my babies and my family.” Those “babies” are Bullock’s two children, Louis and Laila, whom she adopted in 2010 and 2015 and raised with her long-time partner and the man she called “the love of my life,” Bryan Randall. However, her motivation for stepping out of the spotlight might also have had something to do with Randall’s three-year battle with amyotrophic lateral sclerosis (ALS), which he lost on August 5, 2023, at the age of 57.
Although Bullock is known as one of the most private celebrities, she is also one of the most beloved. Randall’s death caused an outpouring of love and support for the actress, with fans and celebrities taking to social media to express their condolences. It also caused an outpouring of funds. Randall’s family asked for donations to the ALS Foundation instead of flowers. TMZ reports that following that request, donations went up a staggering 500% from this time last year. The organization told TMZ that the funds will “help our urgent work to make ALS a livable disease through local care, national advocacy, and global ALS research.”
What is ALS?
Randall’s death has once again thrust ALS into the collective consciousness, but the debilitating condition was first discovered in 1869 by French neurologist Jean-Martin Charcot. However, it wasn’t until baseball great Lou Gehrig was forced to retire from the Yankees in 1939 due to ALS that it garnered publicity. Commonly called Lou Gehrig’s disease, the progressive condition that also affected Stephen Hawking destroys the brain cells in the nerve and spinal cord that control muscle movement. It may look like muscle weakness in its early stages, and simple things like buttoning a shirt can suddenly be problematic. ALS can affect swallowing, speaking, and breathing as it progresses. In the late stages, muscles become paralyzed. Patients often have to be fed through a tube as they can no longer eat or drink, and respiratory failure commonly leads to death.
What Causes ALS
According to the ALS Association, statistics show that someone is diagnosed with ALS every 90 seconds, and among those diagnosed, 90% have no family history. That means the cause of the majority of ALS cases remains a mystery. But although the reason has yet to be pinpointed, there are some risk factors that scientists have identified. According to the Mayo Clinic, ALS is more common in men than women until the age of 70, at which time it evens out. And, speaking of age, the risk for ALS increases until age 75, but it most commonly occurs between the ages of 60 and the mid-eighties. Studies also show that environmental risks like smoking can have an impact, especially in post-menopausal women.
ALS is Not One Size Fits All
One of the most frustrating things about ALS is that it is not a one-size-fits-all diagnosis. While most people receive the diagnosis later in life, there are those like Stephen Hawking, who was just 21 years old when he learned of his disease. Early symptoms vary widely, as does the rate of progression, and the life expectancy, which can range from two to ten years or longer. Regardless of how it starts or how long it takes to progress, eventually, everyone experiences progressive muscle weakness, paralysis, and death from complications like respiratory failure.
What Can You Do?
Sadly, there is no cure for ALS nor a definitive way to prevent it. However, Medical News Today says there is some evidence that carotenoid-rich foods (read dark green veggies) could help, if not prevent ALS, at least delay the onset. According to the ALS Association, less than ten FDA-approved drugs are approved to treat ALS, including Rilutek, which has been shown to slow the disease’s progression. The earlier you can get on a treatment protocol after diagnosis, the better.
The problem is that diagnosing ALS is a lengthy process. Unlike other diseases, ALS doesn’t appear suddenly, and early symptoms like muscle weakness or clumsiness are often ignored or chalked up to the aging process. Testing will need to be done by a neurologist to rule out other diseases. Once ALS is confirmed, do your research. Get a second opinion. Find support groups and educate yourself on the disease. Knowledge is power. Ask about alternative or holistic treatments as part of your treatment plan, and don’t be afraid to advocate for yourself.
While there is currently no cure, research on ALS is ongoing, and funding is needed. If you’d like to make a donation, visit the ALS Association.
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