At the age of 28, after he was diagnosed with ALS (amyotrophic lateral sclerosis) in August 2014, Mr. Bjorn Formosa decided not to let this difficulty take over, but focused his efforts and those of many around him, to realise a dream, which he managed to turn into reality. Mr Formosa, has become a bona fide household name across the Maltese islands. Mention it anywhere – on Facebook, in the workplace or around a dinner table – and people know who he is. This is mainly because out of true altruism, as he proudly stated, he did this to help others with the similar degenerative diseases, to lead an easier life.
As covered by a Times of Malta article he married Ms. Maria Muscat, now Mrs. Formosa in late 2016. They donated their wedding gifts to the cause. Married life is not much different from when they were engaged… although they now fight more, Ms Formosa joked. As her husband’s health deteriorated over the past months, the two have been inseparable, spending the whole day, seven days a week, together.
It has been calculated that every person diagnosed with ALS costs the foundation €40,000, with around 10 people being diagnosed every year, Mr Formosa said. There are between 30 and 40 people with ALS in Malta, and 20 of them seek the foundation’s support. Dar Bjorn officially opened its doors on 20th October 2017. The Qormi home is the first to offer assistive ICT support and services to patients with ALS, multiple sclerosis and other neurological diseases.
“You learn loads of things in this situation,” Mr. Formosa says. “You teach yourself to be more efficient, not to waste time but make the most of it. When you have limited time, this is even more important. It is essential to always have objectives to go after, to use your time in the most productive and sensible manner; to know that something small can result in something huge. It’s about really doing something with your life.” The 32-year-old IT guru hit the headlines as he made his daily struggles public in an bid to raise awareness about the disease, setting up the ALS Malta Foundation and donating €100,000 to fund research into the disease.
In March 2017, over €900,000 was collected through a fundraising telethon, with the money going towards refurbishing the home and equipping it with the necessary technology. During the telethon, Prime Minister Joseph Muscat, who inaugurated Dar Bjorn, announced the government would be covering the annual running costs.
ALS (also referred to as “Lou Gehrig’s disease) is one of many known diseases that affects nerve cells in the brain and spinal cord. The number of similar deceases is not a small one, and taken together, neither is the number of individuals affected. Whichever the neuro-muscular decease involved, the affected individuals face and share many of the symptoms and dilapidating effects, on their motor abilities and level of independence. This is why practical solutions, most of which relying on ICT, should be made available as the person’s physical condition worsens.
As most of these diseases have paralysing effects on patients, homes for those with ALS, Muscular Sclerosis and Muscular Dystophy, must be specially equipped and designed in a way that allows residents to control every aspect of their daily lives. In extreme cases, over time, when even speech is impaired, this requires using just one’s eyes. This means that anything from, communication tools, to lifts, doors and televisions, must be adapted to allow the user’s ability to control them.
In the first stages of ALS, patients begin to lose control of their muscle movements as their motor neurons stop working as they should. In later stages of the disease, voluntary muscle action is affected and patients may become totally paralyzed. ALS is a devastating disease that robs patients of their ability to experience life to the fullest.
While no known medication or technology can heal motor neurons, allowing patients to do all the things they used to do, assistive technologies like Tobii, Eyegaze Edge and others can help them recapture important parts of everyday life.
Because every person with neuro-muscular deceases is a little different, it’s hard to say exactly when each patient will need each assistive device. However installing a wheelchair ramp and purchasing an SGD (Speech Generating Device) device before either is necessary can save trouble later on.
This is because getting used to this equipment and incorporating it into one’s daily routine can be challenging, both in terms of accepting them and also because of the learning curve involved. One should always give the persons involved and their close family, time to adjust to these additions to their home and daily life.
Examples of related assistive technology tools
Augmentative communication (SGD) tools which allow users to control computers by looking at the screen of their device. At present, the most common solutions are eye tracking technologies, which combined with a grid system or probabilistic pattern, match the user’s eye movement to mouse pointer control or option selection. This then creates text/commands that can be spoken aloud or otherwise digitally transmitted by the user, to other people or devices.
- Environmental control via computer to hardware interfaces, radio based or otherwise, which trigger the movement of curtains, temperature control, motorised beds/wheelchairs and communication systems.
- Computer enabled, remote CCTV security and aperture control triggers.
- When the decease begins to affect the muscles that control breathing, respiratory assistance will become necessary.
- Among the future technology projects – thought controlled human exoskeletons as alternatives to wheelchairs
- ALS Malta
- Technology against ALS
- TVM video coverage of Dar Bjorn inauguration
- Vassallo Group video footage of opening of Dar Bjorn
- About ALS