BROOKE Eby has given her followers a very solemn update on her rare health battle.
In a new video posted to Instagram and TikTok, the ALStogether charity founder and influencer, 36, said her prognosis is “not good” after testing this week.
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Brooke, who was diagnosed with terminal degenerative nervous system disease ALS in 2022 after battling mysterious muscular symptoms for years, said her latest doctor’s appointment was a “bust.”
After visits with a variety of specialists, she saw her neurologist.
“It was strange,” she shared on Thursday, September 11.
“The only thing she had me do is, she said, ‘Let me see your tongue,’ and so I stuck out my tongue and she said, ‘Your tongue is great.’ Not the first time!” she joked, keeping her humor despite the bad news.
Then Brooke, who uses a wheelchair for mobility and a BiPAP machine to help her breathe, said she asked about a pulmonary function test.
“She was like, ‘Oh, you don’t have to take that test anymore. Last time, you were at 27, we pretty much stop testing after 50. There’s no reason to put you through that,'” Brooke continued.
“For a disease where we don’t have benchmarks on how people progress, shouldn’t we be collecting every single data point? She just went into this spiel of how they don’t have enough funding.
“The whole thing, I was just kind of like, ‘This is just kind of disheartening.'”
Brooke then said she received grim, not not unexpected, news from her doctor.
“Then I asked, ‘If I were to go down there and get my breathing number and show it to you, you don’t think you could give me a clearer prognosis?’
Why is it called Lou Gehrig’s disease?
ALS, the most common type of MND, is also known as Charcot disease and Lou Gehrig’s disease.
Henry Louis “Lou” Gehrig was born in the US in 1903, and was a successful baseball player.
He held many records in his day, including the most career grand slams, 23, broken in 2013, and the most consecutive games played, 2,130 which stood for 56 years.
Nicknamed The Iron Horse, he had a stellar career but his performance nosedived, and he was diagnosed with ALS on his 36th birthday in June 1939.
Two days after his diagnosis, he retired from the sport and his condition was made public.
Just two years later, on June 2 1941, Gehrig passed away.
Due to his fame, ALS is commonly referred to as Lou Gehrig’s disease in North America.
‘THIS IS DISHEARTENING’
“And she goes, ‘your prognosis is not good, It’s not good. You’re very terminal.’
“And that was the only time I laughed that entire day,” she concluded, finding humor in the harsh comments.
Brooke revealed her breathing function is now at a 12 out of 100.
“I told my friends that, and I think I scared them all.” she said.
“Maybe I’m just numb to it all, but I was not all that concerned. We all knew where this train was headed. So don’t get all mushy on me now.”
BRAVE BATTLE
ALS, also known as Lou Gehrig’s Disease, typically has a life expectancy of two to five years from a patient’s diagnosis, ALS United has reported.
Brooke has said she first developed a tightening in her calf seven years ago, and began limping.
However, she didn’t receive an ALS diagnosis until four years later.
Brooke gradually lost her ability to walk, using a cane and then a wheelchair.
She now is almost completely paralyzed.
“I absolutely hate being paralyzed. I hate it so much,” she said recently.
“It feels like someone started sneaking into my room in the middle of the night seven years ago, and first they just poured cement over one of my feet, and a few years later, they poured it over the other foot, and then in the last year, they’ve poured it over my entire body.”
She founded ALStogether, an organization connecting people diagnosed with ALS.
Grey’s Anatomy and Euphoria actor Eric Dane was also recently diagnosed with ALS, and shared his touching story in an emotional interview on GMA.
“I will never forget those three letters,” he said of ALS. “It’s on me the second I wake up. It’s not a dream.”
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