Key Points
- Brazilian IT professional Marcio Amaral was diagnosed with amyotrophic lateral sclerosis (ALS) in 2022, after a year of tests.
- ALS is a degenerative condition that can prevent people from performing tasks such as walking, chewing, swallowing, speaking and breathing.
- May is ALS Awareness Month and Marcio encourages people to ‘spread the word’.
“During the runs, I began having to stop, and then I started stopping four or five times. Then, instead of running, I started walking, as I felt too weak to do even the simplest activities, like pulling the trolley at the supermarket,” he told SBS Portuguese.
Jamilly and Marcio after arriving in Australia. Source: Supplied
At first, he thought the symptoms were due to staying at home for a long time, without moving.
“Sometimes, I was sitting next to Marcio, and I felt it.”
The Australian government program finances costs associated with the needs of people with disabilities, which, according to the couple, helps a lot in dealing with the daily limitations Marcio faces.
What is ALS?
ALS still has no cure, and researchers are still trying to understand the causes.
Diagnosis
Receiving an MND diagnosis involved undergoing several tests to exclude other conditions, Marcio recalled.
I had to do several tests for a long period, and the doctors could see a progression of the disease after a year, with a decrease in lung function and muscle strength. Then, the doctor was able to identify that it was ALS.
Marcio Amaral
“We are Christians, we pray together and ask God for help to move forward. It’s been like that ever since,” he said.
Marcio in July 2023, at the Run Melbourne race to raise funds for studies seeking to cure MND/ALS. Before limitations due to the disease, Marcio used to run in the park. Source: Supplied
“It was difficult to digest and understand how I would move forward. To get this information to people, I made a video, published it on social media and even shared it with the company where I work, which has 3,000 employees. They sent me several messages of motivation. This gave me strength to keep fighting.”
“Some felt sorry for us, which was very uncomfortable. It took us six months to be able to speak because we had to strengthen ourselves to deal with other people’s emotions,” she said.
What help is available?
According to her, people under 65 have plenty of support available from the NDIS.
It could involve a range of equipment or funding to get their homes modified. For example, they might need a different door or a ramp or some access to enable access to their house.
Jo Whitehouse, General Manager of Support Services of MND Victoria
However, people over 65 diagnosed with MND have a different path to explore. According to Jo Whitehouse, they need to access support through My Aged Care, “which is a completely different kind of service and system”.
How advanced is the research now?
“The Australian MND Registry is where people can input all their details about familiar diseases into this database, which sends news to researchers to do better research about the disease and also connect the research community. It’s a relatively new initiative in place for about two years,” Whitehouse said.
Marcio and Jamilly alongside friends from church. He says that the greatest value is in people, especially those who are always around. Source: Supplied
‘Spread the word’
Therefore, he encouraged others to make their experiences public.
You don’t know the strength of human beings to come together for a cause.
Marcio Amaral
“Talk to your friends and those close to you and spread the word. Help will come from places you can’t even imagine, especially for us here in Australia, away from our family,” he said.