Actress and cultural producer Paloma Alecrim, 26, has been diagnosed with amyotrophic lateral sclerosis (ALS) after experiencing excessive fatigue. The rare neurodegenerative disease has progressed to the point of causing paralysis and alter speech. She from Araçuaí (MG), she lived in São Paulo where she worked as an actress, but she had to return to her hometown with the diagnosis and the expectation of living only 2 to 4 years. VivaBem, Paloma tells her story.
“The disease came out of nowhere. I started feeling excessive tiredness and muscle weakness in April 2022, but associated my symptoms with the covid sequelae I had a year earlier.
The symptoms got worse over the months and I fell while walking down the street or riding my bike, I slipped at home, I didn’t have the strength to cut food, I had difficulty handling cutlery, I couldn’t comb my hair.
He also suffered from muscle spasms, involuntary movements and his voice was often hoarse. Simple everyday things used to be big challenges and anyone who knows me knows I’m not like that. My body was letting me know it wasn’t right.
I am an acting student and in September 2022 we had a singing lesson. We started introducing ourselves, and when it was my turn, my voice didn’t come out. I started to get emotional because I couldn’t talk, but it wasn’t shyness. I was greeted by the teacher and friends, but I went home thinking.
At that time, I started with my Olhos D’água monologue. I already had the disease, but I didn’t know it and, albeit with difficulty, I made my debut. It was very difficult, but I managed.
I went to the neurologist even though I hadn’t been able to do the required tests: an MRI and an electroneuromyography of the 4 limbs. At the follow-up visit, the left side of my body was already very compromised, with hand atrophy.
The leg was shaking for more than a minute
On one occasion I filmed one of the muscle spasms I was having at night. My leg had been shaking for over a minute without me being able to control it. Even though it was a serious and urgent case, I had to wait for a vacancy through SUS and that anguish took hold of me.
In November, I called a doctor friend and sent her a recording of the spasms. She referred me to the Hospital das Clínicas of São Paulo, because she was an emergency.
I was hospitalized for five days and underwent several tests and only then was diagnosed with Amyotrophic Lateral Sclerosis (ALS). Diagnosis takes time because it is an extremely rare disease and confirmation is done only by exclusion (other diseases need to be ruled out to confirm ALS).
“I got the news myself”
I received the news alone because I didn’t want to worry my family who were far away. [Paloma estava em São Paulo e a família, em Minas Gerais]. The doctor took me into a room with five other doctors, gave me the diagnosis and explained that I still had 2 to 4 years to live. They were afraid because it’s a rare disease and, at my age, even rarer.
I returned to Minas in November to live with my grandmother, whom I consider like a mother, but I didn’t have the economic conditions to make changes to the space. I adapted with what I have at the moment. I enjoy life, I’ve never been one to sit down and complain about something. I’m the take and do type.
‘He wants me to shut up’
Despite this disease, I try to bring lightness and joy into my life. I joke about the challenges I face and see that, by doing this, I lighten the environment for my mother [a avó materna]who takes care of me with so much love.
His strength is my strength, my inspiration. Salete Alecrim is my family, my land, my religion, my faith. I take this opportunity to thank you. I appreciate every day, every hug and moment. And I make the most of the affection offered.
I have a good network of friends, I like dancing, cycling, traveling and bathing in the sea, waterfalls and rivers. ‘ELA’ wants to silence my voice, my scream, my song, my feelings, my lust, questions and reflections. They just didn’t tell the unsuspecting ‘HER’ that I have ALS, but she doesn’t have me.”
understand the disease
Dr. Thiago Taya, neurologist and neuroimmunologist at the Hospital of Brasilia (Rede Dasa) and professor of neurology at the Catholic University of Brasilia, explains that ALS is a rare disease, especially in young people.
- It affects, on average, 2 to 5 people per 100,000 inhabitants, depending on the country.
- It mainly affects people over the age of 45-50 and is more common in men.
- It can occur in younger people but is very rare.
- There are still few certainties about the cause of the disease, but there is a genetic factor (which does not mean that it is hereditary): it occurs through a specific DNA mechanism which generates the tendency to develop ALS.
- In practice, the affected neurons wear out and die, which stop sending messages to the muscles.
- It has a rapid evolution: survival ranges from 2 to 4 years.
- Progressive muscle weakness, which gets worse day after day, week after week, month after month. Warning: common tiredness, after a day’s work and which passes after rest, is not a symptom of the disease.
- You can start with one leg and one arm and then work your way up to the other limbs. It can reach the face (the patient cannot move his mouth, eyelid, forehead).
The only movement that ALS usually spares is eye movement: looking sideways, up, or down
Thiago Taya, neurologist
- Trembling sensation in the muscle, which is when the muscle shakes and moves on its own. It can happen in various regions of the body.
- Stiff and contracted muscle, preventing movement of the limb.
The disease does not affect the cognitive part of the patient, i.e. memory, logical reasoning, problem solving ability and orientation are fully preserved, which causes suffering to the patient because he loses movement, but has his consciousness intact
Thiago Taya, neurologist
- There is no cure. The patient should undergo physiotherapy and speech therapy, to try to preserve as much muscle strength and throat strength as possible.
- Psychological support is also important.
- There is no way to prevent the development of ALS. Rapid diagnosis is the best way to prevent the accelerated progression of the disease.
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