Ah, the joy of discovering you’ve been diagnosed with Amyotrophic Lateral Sclerosis (ALS). It’s like winning a lottery where the only prize is a speedy exit from reality. Each year, about 5,000 lucky individuals get the privilege of this terminal diagnosis.
And here’s a fun fact: the numbers are climbing! An estimated 33,000 Americans were enjoying the ALS experience in 2022, expected to rise to over 36,000 by 2030. Now that’s what I call a party!
Due to its rapid progression and variety of debilitating symptoms, providing care for ALS patients often results in financial ruin. This delightful little gem of a disease has even earned the nickname “the bankruptcy disease.” Sounds uplifting, doesn’t it?
The average age for this unwelcomed diagnosis is 55, but don’t worry—you can also get ALS in your 20s and 30s! The best part? Most people find themselves completely unprepared for both the emotional rollercoaster and the financial crash that comes with it.
Advocacy groups like the ALS Association and I Am ALS are shouting into the void for funding and expanded healthcare coverage through Medicare and Medicaid, while families are left to pick up the pieces. “It’s been known since the 1800s,” Marianne Keuhn from the ALS Association quips, “It’s not that it’s incurable; it’s just been woefully underfunded.” Cheers to that!
The Cost of ALS—because who needs savings?
According to a riveting 2025 study by the ALS Association, patients on Medicare can expect to dish out an average of $47,000 their first year, with about $6,802 coming directly out of their pockets. Is it just me, or does that seem only slightly more than the typical day at the amusement park?
But wait, there’s more! Costs can escalate from $31,000 in the beginning to a staggering $121,000 annually in later stages! So, take a moment to imagine the six-figure spend as the disease progresses. Don’t be surprised; after all, medical expenses are the “new black.”
For a little perspective, cancer patients with private insurance feel lucky paying about $600 a month for the first six months after diagnosis. What a bargain!
Now, let’s talk about short hospital stays for our ALS buddies. Patients rack up average costs of over $11,200 for a quick visit—compared to a measly $3,200 for those without ALS. Talk about being a VIP in an unfortunate club!
A staggering 25% of ALS patients or their caregivers have admitted to borrowing money or going into debt to cover their spiraling costs. It’s almost like being tasked with buying a yacht but you can only afford a canoe.
With no known cure in sight, and only about 20% making it past five years post-diagnosis, it’s important for families to grapple with the harsh realities. But don’t worry too much—Keuhn assures us that the majority will soon be too busy adjusting to a life of dependency on others.
“ALS forced me to retire” – Just like that friend who thinks karaoke is a good idea
Meet Troy Fields, a sales professional with over 20 years under his belt. His journey started with some twitching in 2016, which he promptly ignored. You know, denial is a beautiful thing! By 2018, Troy was diagnosed with ALS and declared, “I’m out!” from work in 2019—just in time for a retirement-style nap.
Thank goodness for long-term disability insurance, which Troy had set up before the windfall of ALS hit. He’s been able to stay afloat financially, despite the looming doom that comes with a degenerative disease. Oh, and his wife has health issues of her own, so why not double the fun?
Troy reflects on how unexpected family caregiving can really mess up finance plans. Surprise! Your unpaid family member just quit their job—now what?
A Mind-Bending Twist on Family Caregivers
Step right up for Blaine Dangel’s story—a two-for-one package deal as both patient and caregiver! She didn’t notice her limp because who has time for that? When her mother showed symptoms, Dangel’s wife figured out they were both harboring the delightful SOD1 mutation. Testing confirmed their suspicions faster than a reality TV show twist.
Saving for retirement? That’s cute; Dangel had been meticulously planning for her future, considering her father’s financial lessons learned too late. Talk about a planner!
The Silver Lining of Fortunate Circumstances
Mary Ann Abeska, who was already living the stress-free retired life, found herself diagnosed in 2015. After hastily wrapping up her plans to move, her husband Tim found himself navigating the not-so-fun world of caregiving, but thank goodness for Veteran Affairs benefits! Who knew bureaucracy could sometimes save you?
After all, while some may find ALS to be a nightmare, Tim claimed, “It wasn’t a crisis from a financial standpoint.” Winning!
‘I’m gonna fight like hell!’ – The Als Edition
Meet Tina Cascio, who managed to snag her home just two weeks before ALS crashed the party. “Denial” became her middle name, but she also packed up and moved on after realizing she couldn’t keep working as a nurse with legs that decided not to cooperate.
Earning decent cash? Sure! But with the newly introduced SSDI benefits post-2020, she gets something to hold onto, even if the amount doesn’t quite cover her mortgage. Still, owning her home gives her a sense of comfort in this financially disastrous rollercoaster she seemingly didn’t sign up for.
