Man, 33, who is ‘completely locked in’ with ALS reveals the first subtle symptom he noticed before diagnosis
He's raising awareness of what his experience has looked like being diagnosed with terminal Amyotrophic lateral sclerosis (ALS).
A 33-year-old man is speaking out to raise awareness of Motor Neurone Disease after losing the ability to walk, move his arms and even breathe unaided in just two years.
Tom Hynes was diagnosed with 'terminal Amyotrophic lateral sclerosis (ALS)' in November 2023 at the age of 31.
Just over two years later, despite 'fighting' the illness 'as hard' as he can, he's taken to GoFundMe to reveal he is 'losing'.
Since his diagnosis, Tom has lost the ability to walk, use his arms and 'even breathe unaided,' reflecting on the quick progression of the illness as 'truly terrifying'.
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Determined not to 'just give up,' he is 'stubbornly fighting' and has taken to social media to raise awareness of the condition, including sharing an initial symptom he experienced prior to his diagnosis.
Taking to Reddit thread 'r/AMA' on February 17, Tom introduced himself to users and updating he's since been left 'nearly completely locked in' by his condition, imploring people to 'ask [him] literally anything' in order to spread awareness.
Amyotrophic lateral sclerosis (ALS) is 'a nervous system disease that affects nerve cells in the brain and spinal cord,' Mayo Clinic explains.
It is the most common form of motor neurone disease (MND).
"ALS causes loss of muscle control. The disease gets worse over time," it adds. "ALS often begins with muscle twitching and weakness in an arm or leg, trouble swallowing or slurred speech. Eventually ALS affects control of the muscles needed to move, speak, eat and breathe. There is no cure for this fatal disease."
On the Reddit thread, a user asked Tom: "I guess I'll be 'that guy': what were the initial symptoms?"
Tom responded: "I knew it was coming but I'm happy to answer that guy. So for me it all started with a pain in the knee and falling over a lot, I thought I had just hurt my foot and well here we are. it's all on my profile if you want the full story."
Tom has detailed his experiences further on a GoFundMe page too in a bid to raise funds to support himself and his partner Jade, who's had to 'significantly reduce her hours at work to care for [him] at home'.
The page sees Tom document how he could 'barely walk three steps' just six months post his formal diagnosis.
The page notes the 'massive strain' the illness has had on not only his physical health, mental wellbeing but his family's financial stability too, particularly amid a cost of living crisis.
You can donate to Tom's fundraiser here.
Tom reflected: "Money kindly donated so far has helped to buy essential equipment and fund some unforgettable day trips to make as many memories as possible, but to help unload some of the worry and pay for less exciting but necessary things such as my funeral."
He resolved: "We ask for any help you can provide, even if it is just sharing our page amongst your friends, family, and colleagues.
"We would like to take this opportunity to thank you."
Poppy Bilderbeck