You are possibly one of countless people around the world who have dumped a bucket of icy water over their heads in the name of ALS. But what is the disease and why do the funds matter?
Joan Cassar and her husband Carmel during their daughter’s wedding in 2011.Amyotrophic lateral sclerosis is the most horrible disease you could possibly be stricken with, according to two family members of people who suffer from ALS.
It destroys a person’s ability to walk, speak, eat, swallow and, eventually, breathe while the mind remains unaffected, virtually rendering the patient a prisoner in his own body.
Simone Galea and Joan Cassar spoke to Times of Malta about the devastating effects of ALS, a rapidly progressive, fatal disease that attacks the nerve cells responsible for controlling voluntary muscles.
There is no treatment, nothing to slow down its rapid regression.
Ms Galea’s mother, Victoria, was diagnosed with ALS nearly two years ago when she was 64.
Her slurred speech was misdiagnosed by her psychiatrist and subsequent physiotherapists did not seem to have the patience to listen to her mumbling and rapidly faltering words, prompting the elder Ms Galea to ask her daughter to stop taking her for physiotherapy sessions.
“I saw my mother go from an independent person who lived on her own to a person who can no longer move and who is fed through a gastric tube,” explained Ms Galea, who visits her mother every day at the home she lives in.
The lack of information meant that the 38-year-old had to deal with probably well-meaning but misguided questions about her mother.
“People sometimes keep asking me how my mother is and whether she is feeling a bit better. You can never get better with this disease.”
What hurt most was that as her mother could not communicate, people assumed she was also mentally unresponsive.
“But her mind is completely there. Some of her friends abandoned her,” she said, her voice breaking.
“Others say they can’t bear to see her in this state – but now is the time she needs them most. She appreciates every visit.
“Hospice were very supportive – because they handled similar patients, they could guide us through what was going to happen.”
Many well-known faces, including Auxiliary Bishop Charles Scicluna, have taken the ice bucket challenge to raise awareness and funds for ALS.Most patients live two to three years following diagnosis, there is no treatment
Ms Galea hopes that the ice bucket challenge is prompting people to truly inform themselves on ALS.
Ms Cassar, 57, is the full-time carer of her 61-year-old husband Carmel who was diagnosed with ALS eight years ago.
“He was an incredibly active man – he used to juggle three jobs.
“Now he can do absolutely nothing by himself,” she said.
“This horrible disease even changed his character. From a cheerful, family man he’s become a depressed person who snaps easily and harbours a lot of anger.
“I love trying to make him laugh but he gets angry as it becomes harder to breathe when he’s laughing.”
Caring for her husband also takes its toll on Ms Cassar’s health as she needs to handle his rigid body.
Once, he tumbled off the bed at 2am and Ms Cassar had to phone their son to help lift him up as she couldn’t do so by herself.
She describes her husband as a fighter, adding that his neurologist was amazed at how he is still able to swallow his food eight years down the line.
“I really hope with all my heart that the funds from the ice bucket challenge will help doctors find a cure.”
Neurologist Norbert Vella explains that there are currently 20 patients in Malta who suffer from a motor neurone disease – a group of progressive neurological disorders that ALS falls under.
He estimates that between six and 10 patients have ALS.
“The disease does not last long – most patients live between two to three years following diagnosis.
“There is no treatment – all that can be offered is supportive care in the form of speech therapy and occupational therapy.
“Most of the cases we hear of patients asking for assisted suicide are ALS patients.”
A spokeswoman for Hospice Malta explained that the organisation supports ALS patients and their families through physical, psychosocial and spiritual support.
“ALS patients have various needs depending on the stage of the disease. The Hospice team would perform a primary assessment with regular follow up visits and sessions as well as telephone calls to make sure that the support is given according to the patients’ need.
“Hospice Malta also helps indirectly through the provision of support to the whole family when needed.
“Although the disease is not as common as other diseases, the amount of disability varies from one to another and the need for Hospice services could be quite intense.”