In January 2017 he went for a walk on the Arcos de Valdevez ecovia when he began to notice “a difference in his left foot, loss of strength and foot dragging”.
That was when Isabel Silva’s ordeal, resident in Gondoriz, Arcos de Valdevez, began to pass through the following months between exams and hospitalizations, until the “scary” diagnosis came: Amyotrophic Lateral Sclerosis (ALS).
Several stages of the disease followed until Isabel was thrown into a wheelchair, one of the initial consequences of the disease. In order to have more quality of life, the family appealed to various media and through a Facebook page in order to acquire a van adapted to transport the family member.
The objective was reached today. Isabel Silva already has an adapted van, after several offers coming from different points of the society of Arcuense and from all over Portugal.
In a post on social networks, Isabel’s family thanks her: “To everyone who helped us from the bottom of our hearts. A window of hope and motivation opens up in Isabel’s life in this great battle against the disease ”.
There is no cure for this disease that affects the nervous system in a degenerative and progressive way, but it is possible to improve the quality of life of users.
The solidarity account, duly authorized by the Ministry of Internal Administration, was created on February 28 of this year. In three months, they managed to raise more than 22 thousand euros.
Although there are state contributions to this type of patient, the bureaucracy so delays payments that many arrive even after the patient has died.
In time, Isabel will no longer be able to take care of herself. But even so, you can see a “positive” side.
“The best thing is to see the positive side, the days I still have to be with the ones I love, the trips to new places where I can still be taken to meet, the treats, hugs and kisses that I can still give and receive to my daughter, to my partner, my family and my friends ”, highlighted Isabel.
Amyotrophic lateral sclerosis
Filomena Borges, responsible for the communication department of the Portuguese Association of Amyotrophic Lateral Sclerosis (APELA), had already explained to O MINHO that this type of acquisitions [carrinha adaptada] they cause “delays” of the State in the reimbursement to the users who suffer from this disease that affects the communication between brain and muscles.
The head of that association explained that there are currently about 800 cases identified with ALS in Portugal, with 200 new cases appearing each year, and that Social Security, through the State, provides support to guarantee the right to mobility, as is the case. case of adapting vehicles, but also to communication.
He added, however, that these processes are “very time consuming and the patients who submit these requests” do not always get to enjoy them in life, given the “unpredictability of the disease” that has no cure yet.
Amyotrophic Lateral Sclerosis (ALS)
Filomena Borges summarized the characteristics of ALS, pointing out that this disease arises when the “responsible motor neurons fail to transmit information between the brain and muscles, because they die early, paralyzing the patient”.
“It is a deeply disabling disease, without definite causes and without a cure, which, in unpredictable proportions, is taking over the person’s body,” he added.
It is a disease without possible rehabilitation, but with the possibility of ensuring quality of life, through physiotherapy, speech therapy, psychology, among other clinical methods.
He explained that the disease may manifest itself initially with difficulties in moving the limbs or speaking and swallowing, also affecting respiratory pressure. “This disease, being incapacitating, turns out not only to the person who has it but also to the family itself, to informal caregivers”.
According to data from the same association, there are currently about 800 Portuguese people diagnosed with Amyotrophic Lateral Sclerosis, with about 200 new cases appearing every year.
Worldwide, according to information provided by CUF, data vary widely according to the type of study and the population concerned, but it is estimated that there are three to five cases of Amyotrophic Lateral Sclerosis per 100,000 people globally.
–
