You remember him as James Bondin, the funny guy with a wig who spent years on Xarabank cracking satirical jokes to break the tension.
But Joe Debono is no longer trying to make you laugh. The actor-satirist has just revealed he is battling ALS, the same neurodegenerative disease affecting activist Bjorn Formosa.
In an inspiring interview with his former colleague Peppi Azzopardi, Debono spoke about slowly discovering that he was losing control of his limbs as the disease worsened.
“I was playing tennis, and I was already experiencing difficulties in my left hand, I could feel I had a problem but I kept playing normally.”
“Then last March, I had a nasty accident where it was like I wasn’t able to stop myself with my hands and I landed on my face… that’s when I realised something was wrong,” he continued.
After the accident, he was referred to a neurologist where they confirmed that he had ALS -amyotrophic lateral sclerosis, a disease that causes the death of neurons controlling voluntary muscles.
“The condition limits me – it’s affected my hands the most, I can use them a little bit but I now need help with so many everyday things… I’m slowly losing strength in my hands.”
Debono had become a household name after his infamous run-ins and skits on popular primetime show Xarabank.
Debono spoke about the support he’s found since being diagnosed with ALS, and praised Bjorn Formosa for not giving up, even in the face of all these challenges.
“Bjorn always inspired me – but now that I’m seeing how he works up close, I am understanding it even more, Debono said. “I spoke to him, and he told me: “whatever you need, just let us know – don’t lose heart, we have a lot of help to give.”
As he loses the ability to control and use his hands, Debono looks towards the technology available at Dar Bjorn to appease fears that he might one day lose his ability to communicate. ALS Malta offers modern computers that work via eye-tracking – and they also provide professionals who can teach someone to use it.
“I was offered access to use the computer system so that I can write with it… Bjorn uses it himself,” he said. “When Bjorn uses it to send an email, it says ‘written by eye’ and it also says ‘please forgive me’ if emails are sent with mistakes, even though he doesn’t make many mistakes… but I’m discovering just how much Bjorn does just by using his eyes.”
Debono said that knowing there were these options in Malta “gave me a peace of mind that there’s another solution for me” before Bjorn and his team for offering their help to whoever contacts them, saying they didn’t know who he was when he spoke to them but they treated him with the utmost repost.
“Whoever comes for help, they help.”
However, Debono didn’t shy away from reality – Bjorn, and many other sufferers such as famous scientist Stephen Hawking, lose near complete control of their bodies as the disease progresses.
“If I enter a state where they need to pick me up, I will definitely need help that is more specialised and focused, and I know that just as Bjorn has in the first home, the new home would be built with the right facilities and filled with people who try to make your life as comfortable as possible in these circumstances,” he said. “I always admired him… but now…”
“They are a fountain of help, and they do it naturally – you don’t feel like you are begging for help.”
ALS Malta will be hosting a massive fundraiser on the 27th September to raise funds for Dar Bjorn 2, a bigger and better home for ALS and other neurodegenerative diseases. Up to 70 people are currently on the waiting list to be given specialised free treatment in Malta, and everyone who can contribute or donate is being urged to help out.
Pledge your donation to ALS Malta using the below numbers:
5061 8936 – Euro 6.99
5061 9271 – Euro 11.65
5100 2017 – Euro 20
5190 2075 – Euro 50