The worse his health gets, the more Bjorn Formosa feels motivated to improve the lives of those who are yet to be diagnosed with ALS.
“I’m working ‘gas down’ on raising awareness and funds until I still have the time, and ALS Malta foundation will take up from where I leave,” the 29-year-old told this newspaper nine months since he was diagnosed with amyotrophic lateral sclerosis.
ALS is a progressive neuro-degenerative disease that affects nerve cells in the brain and spinal cord. As the disease progresses, the body’s motor neurones stop sending signals to the muscles until the muscles start to die, leading to partial paralysis and eventually a fully paraplegic state.
It is a rare disease with no cure or effective treatment, however several have heard of it because of the Ice Bucket Challenge, which many took during the successful awareness campaign of 2014.
One of the people who took the challenge was Mr Formosa himself, before he was diagnosed with the condition. He spoke to the Times of Malta in August last year, in what was to become the first media outreach to raise awareness before eventually founding ALS Malta.
“Over the past nine months, the symptoms developed at a quicker rate than I was expecting. In most cases patients live three to five years after their first signs of disease.
“In my case, it’s a bit more accelerated… I’m already in a wheelchair and I’m finding it difficult to breathe and speak at times,” he said.
Asked about coming to terms with ALS, Mr Formosa said he had done his research a few months before being diagnosed, but once the condition was confirmed, he realised he would rather focus on what he could do, rather than what ALS would not allow him to.
In my case, it’s a bit more accelerated… I’m already in a wheelchair and I’m finding it difficult to breathe and speak
He now has a “million and one plans” and feels “supermotivated” for the year ahead.
“The more the disease progressed and my health went backwards, the more I worked hard and moved forward together with the ALS foundation, which is currently collaborating with the University of Malta to draw a database of patients and analyse their genetics,” he added.
Mr Formosa urged others in a similar situation to surround themselves with people who respect and love them. Solitude was not ideal in such situations, and Mr Formosa urged others with a similar condition to keep themselves occupied.
And with a year packed with activities, that is exactly what Mr Formosa is doing.
Meanwhile, adapting to his new condition remains challenging, but not impossible. “I do what I used to do, but in a different way. The transition to living the life of a person with a disability is challenging, but we manage in one way or another,” he said.
As he speaks to the newspaper, social media messages and e-mails pop up on his laptop. He types with his thumbs, and when his arms feel worn out, he turns to a screen that reads eye movement.
Apart from funding research, money collected by the foundation would be invested in similar equipment for others diagnosed with ALS. But such equipment is expensive, and some have not been able to communicate for years because they do not have the means.
Sitting next to him, his friend Imran Shaikh, who is helping out with raising awareness, recalls that the two had fallen out before he was diagnosed.
“But as Bjorn himself says, there is always a silver lining, and when I got to know, we put everything behind us and started to see how we can make the best out of every hour,” he added.
A concert hosting Red Electrick, former Malta Eurovision Song Contest winners Firelight and Amber, and Planet Seed is being organised on May 20 for the Beat it May ALS Awareness Month.
Tickets can be bought from bit.ly/beatitmay or on 7920 9420. More information on how to help out the foundation on www.alsmalta.org/donate.