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Shocking Video Shows Rapid Progression of Motor Neurone Disease
A distressing video clip has emerged, illustrating the swift and devastating advancement of motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS), in a young woman. The footage poignantly captures the physical impact of this debilitating condition.
Woman’s Battle with ALS Documented on Social Media
Brooke Eby, a 36-year-old from Maryland, USA, has bravely shared a video on Instagram, chronicling her journey of becoming wheelchair-bound within a single year due to ALS. This raw and honest portrayal offers a glimpse into the harsh realities of living with motor neurone disease.
Diagnosis and Early Signs
Eby, formerly a healthy business development manager, received her amyotrophic lateral sclerosis (ALS) diagnosis in 2022. This diagnosis came three years after she first noticed subtle warning signs of the condition. Motor neurone disease, an incurable ailment, causes progressive muscle wasting, ultimately impairing movement, speech, and even the ability to swallow.
The Relentless Progression of MND
The impact of ALS has been widely recognised, having tragically affected figures such as Bryan Randall, partner of Sandra Bullock, and the renowned scientist Stephen Hawking. Brooke Eby’s video, viewed over half a million times, reveals her rapid decline. She recounts how struggles with speech and unaided walking quickly emerged.
- June of the previous year: Eby began using a walking stick.
- December of the previous year: She became permanently reliant on a wheelchair for mobility.
- Current condition: Both arms are now significantly weakened, making lifting them a challenge.
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Brooke Eby received an amyotrophic lateral sclerosis (ALS) diagnosis — the most prevalent form of motor neurone disease — in 2022, three years after noticing initial indicators of the illness.
“Progression Update” Details Further Decline
In a separate video update shared earlier in the month, Eby provided followers with a detailed account of her condition’s progression. Marking her three-year “diagnosiversary,” she described the changes. While leg immobility was already established, she highlighted significant deterioration in her arm strength.
“My left arm is now fixed in a bent position,” she explained. “Whether positioned in front or to my side, lifting it is impossible. Regrettably, in the last fortnight, my right arm has followed a similar trajectory.”
She further elaborated on the escalating muscle weakness: “The muscle has weakened considerably, impacting my ability to feed myself effectively. I can still operate my phone for texting, provided it’s positioned directly in front of me. If my phone is placed on the armrest, maneuvering my arm over to reach it requires a slow, inch-by-inch push.”
Through Instagram, Eby routinely shares the realities of living with a body increasingly impacted by ALS in videos often exceeding 500,000 views.
Additional Symptoms Emerge
Eby further explained, “As my arm strength diminishes, my shoulder has begun to atrophy, and the condition of my hands has visibly worsened.”.
She also described a new difficulty in head movement, “When I look downwards, raising my head back up feels like I’m encountering resistance.” While her speech remains clear, she now needs to pause for breath between sentences.
“Beyond these symptoms, I generally feel unwell,” she admitted. “Mornings often bring nausea, pain, restlessness, or exhaustion. I long for the simple feeling of waking up feeling well rested.”
Understanding ALS and its Impact
ALS (Amyotrophic Lateral Sclerosis) is a rare neurological condition that progressively damages the nervous system. For Brooke, initial indicators were subtle. At 29, she first noticed a tightening sensation in her left calf.
“I also observed that my walking pace had significantly slowed, but being only 29, I didn’t consider it serious,” she recounted.
ALS can result in paralysis and ultimately, fatality. Renowned scientist Stephen Hawking famously lived with the condition.
ALS also tragically claimed the life of Sandra Bullock’s partner, Bryan Randall (pictured with Sandra in 2018), in 2023.
It was only after extensive tests and scans over three years that she received the definitive ALS diagnosis.
Coping with an ALS Diagnosis
In another video, she disclosed, “Upon receiving my diagnosis, it took me nearly two months to even verbalize the acronym ALS. Discussing it was incredibly difficult and I was easily brought to tears.”
An experience at a friend’s wedding two months post-diagnosis marked a turning point. “I was a bridesmaid and required a walker, identical to the bride’s grandmother’s. Feeling deeply embarrassed at this college reunion, I suggested to my friend we leave.”
Her friend, however, offered a different perspective: “She suggested embracing the situation, turning potential embarrassment into fun.”
Eby continued, “Within an hour, the bride was playfully limbo-ing under my walker, and I was giving ‘walker rides’ on the dance floor. I realised that using humour to connect with people significantly eases my discomfort.”
Leeds Rhinos icon Rob Burrow (pictured) passed away last year at just 41 after battling MND for four and a half years.
This uncommon and incurable disease impacts the brain and nerves, depriving individuals of their capacity to move, eat, and eventually, breathe. Pictured, Rob Burrow in 2013.
Prevalence and Prognosis of Motor Neurone Disease
Approximately 5,000 adults in the UK are living with ALS, with a lifetime risk of developing the condition estimated at 1 in 300. For approximately half of those diagnosed with motor neurone disease, life expectancy ranges between two and five years from symptom onset, though progression can be rapid.
Some individuals survive for up to a decade, and rarely, even longer. Early ALS symptoms include muscle twitches, cramps, weakness, slurred speech and unexplained weight loss.
Currently, there is no cure for motor neurone disease. However, medical interventions can help manage the condition’s impact. The precise cause of ALS remains largely unknown, but research indicates a complex interplay of genetic, environmental, and possibly lifestyle factors. It often affects seemingly healthy individuals.
The previous year, Leeds Rhinos rugby star Rob Burrow, aged 41, tragically died after a four-and-a-half-year fight against MND.
Locked-in syndrome (LIS), a rare neurological disorder, can also occur in advanced cases of ALS.