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’.
The Brazilian national, 42, arrived in Melbourne on a student visa with his wife Jamilly in 2017.
During the city’s prolonged COVID-19 lockdowns, Marcio liked to escape confinement by going for runs in the park.
"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
"The first symptoms I noticed were involuntary movements in the arm, which we call fasciculation,” Jamilly said.
“Sometimes, I was sitting next to Marcio, and I felt it.”
The IT professional’s ALS diagnosis came in 2022, only after at least a year of full assessments looking for the causes of his movement limitations.
The couple's permanent residence visa in Australia was granted in September 2023 and, since then, Marcio, who has already lost much of the movement of his upper and lower body limbs, has received assistance from the National Disability Insurance Scheme (NDIS).
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 is a degenerative, progressive neurological condition. It is a type of motor neurone disease (MND) and both names are often used as synonyms.
ALS causes the destruction of the neurons responsible for voluntary muscle movements, leading to progressive paralysis that eventually prevents the person from performing tasks such as walking, chewing, swallowing, speaking and breathing.
The condition affects around six out of every 100,000 people in the world, with a higher incidence in people over 50 years old. The average life expectancy after the onset of symptoms is up to three years, with only around 10 per cent of people affected by the disease living more than 10 years.
Some rare exceptions exist, such as British physicist Stephen Hawking, who lived with the disease for 55 years.
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
The identification of MND left Marcio and Jamilly devastated.
“The doctor said, 'Make your wish list because you won't be here long'. It was shocking. We cried from that moment until the end of the day,” Jamilly said.
Despite the shock, Marcio said they adopted a positive mindset.
"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
Jamilly said that it was also hard to handle the feelings of others.
"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?
Jo Whitehouse is the General Manager of Support Services of MND Victoria, the state branch of the national peak body that supports those impacted by MND.
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
"NDIS could also pay for support workers who might be able to assist if the person is unable to have a shower safely or to get dressed independently, so maybe using NDIS to come to support and help them.
"Sometimes, the disease impacts speech, so they may need speech therapy and assessment. The speech therapist may prescribe a particular communication device, such as an eye gaze device. Some people need it, and that would be something that NDIS would pay for.
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?
According to Whitehouse, scientists are still trying to figure out what´s behind MND.
"There´s a lot of research going on into the different aspects of what could be causing it and other things that may be involved. For example, environmental factors. It might be linked to hereditary factors as well. But we´re not close to finding a cure at this stage,” she said.
She said MND Australia has organised a registry to provide data for scientists to work on.
"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’
Whitehouse emphasised that it´s important for patients and their inner circle to understand that there’s help available.
"You´re not alone. There are support and services out there to help the whole family. Not only the person with the condition but the people around that person, to go through the gateways and help with counselling to care for somebody with MND,” she said.
This includes a program where carers can get together to share their experiences and exchange information.
After he disclosed his health condition, Marcio said he received support and encouragement from unexpected sources.
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.
