A 26 year-old battling an incurable, fatal disease has bravely made a video to detail the first signs that diagnosed him in an effort to help others.
Mikey Stone, who posts on TikTok as @mikeystonemusic, opens up about being diagnosed with a ‘100% fatal’ neurodegenerative disease - receiving this life-changing diagnosis when he was just 25 years old.
Mikey suffers from Amyotrophic Lateral Sclerosis (ALS) also known as Lou Gehrig’s Disease, a rare disease affecting his motor neurons, the nerves that control voluntary muscle movement.
There is no known cure for ALS, and those diagnosed with the disease typically have a life expectancy of just three to five years following on from the onset of symptoms.
The signs that diagnosed Mikey with ALS
In his video, Mikey bravely opens up about his diagnosis, saying that ‘the nerves that control my body are dying. Slowly, I’m becoming paralysed.’
He continues: ‘People with ALS eventually lose the ability to talk, walk, eat and breathe.’
But perhaps the most important part of the video is Mikey helping the viewers to recognize the signs of the onset of ALS.
‘It started small,’ he explained. ‘I noticed my foot twitching and my muscles tightening. Then, the weakness crept in.
‘First my legs, my left arms, my hand…and it hasn’t stopped.’
Mikey goes on to say that, following his diagnosis earlier this year, he now uses a wheelchair ‘50% of the time’ and now needs a ventilator to breathe while sleeping at night.
But Mikey is not giving up.
‘I want to spread awareness,’ he says. ‘And encourage people to support ALS research because research means more clinical trials, better treatments and hopefully, one day, a cure.’
What is ALS, also known as Lou Gehrig’s Disease?
Amyotrophic Lateral Sclerosis (ALS) is the most common form of motor neuron disease (MND), which affects the nerves in your body that control the movement of your muscles.
Patients with ALS lose control of their motor functions, meaning they struggle to eat, talk, walk and even breathe.
In the US, ALS is also commonly known as Lou Gehrig’s Disease, named so after the famous baseball player Lou Gehrig, who had to retire in 1939 following the onset of the disease affecting his performance. Gehrig would die two years later, in 1941, aged 37.
Mikey has encouraged people seeking to support patients with ALS to donate to the Live Like Lou Foundation, who fund promising research in ALS. You can donate to the foundation here.