A woman has revealed how what seemed like a “silly little symptom” turned out to be the earliest sign of a degenerative condition that would derail her husband’s life.
Prior to April 2023, Andres Albaladejo served as a school resource officer and did many handyman jobs in his spare time. He was constantly busy and helping others. So, when he noticed an unusual twitching in his left arm, he didn’t think much of it as it seemed so minor.
His wife of more than 13 years, Carmen Iris Albaladejo, told Newsweek that they thought it could just be a pinched nerve or a pulled muscle. They considered seeing a chiropractor, and “at worst” he might need surgery.
“Looking back now, we realize how far from the truth that was. What we thought might be the worst-case scenario was only the beginning of something far more serious,” Carmen, 39, of Tampa, Florida said.
The spasms in his left arm lasted for around a month, and shortly after, Andres, now 41, began noticing weakness in the same arm; he started to lose his grip when holding items, but there wasn’t any pain.
He was also experiencing high blood pressure, leading Carmen to fear that he was suffering a stroke.
Andres went through several tests and scans in the months that followed, including MRIs and electromyography tests to measure electrical activity in the nerves and muscles. As those scans didn’t reveal anything out of the ordinary, doctors ordered a blood test for neurofilament light chain levels, which are often elevated in cases of amyotrophic lateral sclerosis (ALS).
Those results came back showing high markers, leading to growing suspicions of ALS.
Andres was subsequently referred to the ALS Center at the University of South Florida where further scans and strength testing confirmed those fears.
“To me, the diagnosis felt like it came through a process of elimination,” said Carmen.
“One by one, they ruled out other conditions, and as more tests came back negative and no other explanations were offered, the reality of the diagnosis began to settle in. But even then, we struggled to accept it.”
The couple were in denial for a long time and struggled to cope with the uncertainty of what lay ahead.
ALS, also known as motor neuron disease and Lou Gehrig’s disease, is a neurodegenerative condition which affects how nerve cells communicate with muscles. Over time, it leads to muscle weakness and can eventually cause atrophy.
The early symptoms include muscle weakness, cramps, twitching, stiff muscles, speech challenges, trouble swallowing, and drooling. This can make everyday tasks increasingly difficult, and even walking or breathing become challenging.
ALS is considered a rare condition, with around 5,000 people in the U.S. diagnosed each year. Unfortunately, there is no known cure at present.
Dr. Mary Ann Picone, Medical Director at Holy Name Medical Center’s MS Center, explained to Newsweek that diagnosing ALS can take a while because the early signs “could mimic myasthenia gravis, multiple sclerosis or Lyme disease.”
Initial symptoms, such as muscle weakness or stumbling, can be misunderstood as clumsiness at first.
“The disease is fatal, but life expectancy can vary from individual to individual. Most patient’s life expectancy is about 2–5 years but about 10 percent of people can live over 10 years,” Picone said.
Patients who are diagnosed at an early age may also have a longer life expectancy, Picone notes.
Andres was just 39 years old when he received his diagnosis in October 2023, a day which Carmen says changed their lives forever.
“Hearing the diagnosis was devastating, we were in complete shock. Sitting in that doctor’s office, the weight of it all hit us at once. We broke down in tears. It was one of the hardest moments of our lives, filled with fear, sorrow, and so many unanswered questions,” Carmen told Newsweek.
Andres’s condition has worsened significantly and he’s now completely wheelchair bound. He’s lost almost all use of his hands, the majority of his leg function and his speech is beginning to fade.
Carmen has become his full-time carer to help him eat, bathe and go to the bathroom. It’s been heartbreaking to see her high school sweetheart deteriorate so rapidly and lose the life he once had.
“To see someone go from being completely independent to nearly fully dependent in under two years is truly heartbreaking,” Carmen said.
“He still has so much to give, so much love, wisdom, humor, and strength. And watching him come to terms with this reality is one of the hardest parts.”
Being a caregiver is a challenge that Carmen never imagined she’d take on, but she’s determined to show strength and support for her husband. Her in-laws have also relocated to Florida to help, which she’s incredibly grateful for.
Throughout this journey, the couple’s 11-year-old daughter has also shown great resilience and compassion. She will do anything to be close to her dad, and she’s embracing this new reality.
In May, Carmen started documenting her husband’s journey on social media (@calbaladej0 on TikTok) as she felt it was important to raise awareness for the brave fighters who battle the condition. A video showing how the twitch in his arm turned out to be a lifechanging condition has gone viral with over 3.1 million views and 61,000 likes at the time of writing.
ALS can be isolating, but Carmen wants her husband and other ALS warriors to know they’re not alone.
“My husband is heartbroken. He feels the weight of his life being taken from him piece by piece, long before he was ready to let go,” Carmen said.
She continued: “There is a strength within me that I never knew existed, one that has revealed itself through the pain and countless challenges we’ve had to face. I’ve been tested in ways I could never have imagined, and yet, I continue to rise each day with love.”
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