Journalist Moshe Nussbaum is the last Israeli to announce that he has contracted muscular dystrophy ALS.
Before him in Israel are also known veteran photographer Ronen Ackerman revealed that he is ill with the disease.
The late sports broadcaster Meir Einstein and the late businessman Dov Lautman are known to have died of the disease.
Moshe Nussbaum bravely revealed the disease // Photo: Shuka Cohen,
The incurable, incurable disease has in the past hit astrophysicist Stephen Hawking who bravely dealt with it while attached to a special wheelchair for decades.
The disease and its prevalence
It is a degenerative disease that affects the cells of the central and peripheral nervous system associated with movement.
Unfortunately today it is a terminal degenerative disease whose causes are unknown to science and therefore also has no cure.
However, at least in terms of prevalence, it is a rare disease and it is about 1-8 cases per 100,000 people.
The cause of the disease is unknown and this is the reason for the great difficulty in finding an effective cure.
Among the possible mechanisms proposed for the disease are environmental toxic factors, for example nerve cell poisoning by metals, chemicals or foods;
High activity level of glutamate, a chemical that stimulates nerve cells and causes damage to muscle cells to the point of death;
Lack of substances responsible for the growth and preservation of the nerve cell;
Heredity - A genetic link is found in 5% -10% of patients.
ALS impairs the function and degeneration of the patient's motor abilities and muscle activity, including muscles that activate the breath, digestion and all body systems.
In this respect, the current life expectancy from the moment the disease is diagnosed is only between 3 and 5 years.
Most patients die from lung failure due to complications of the disease.
In fact, it is a deterioration that leads to the failure of all the muscles in the body, including the muscles of breathing and swallowing until it is restored.
It is important to note that although most patients die within 5 years, 10% of patients survive more than 10 years and in the case of Stephen Hawking for example he survived decades with the disease.
The disease causes weakening of the limb muscles and then the speech muscles, but sometimes, as may have happened to Moshe Nussbaum, in 30% of patients the deterioration is reversed and the speech muscles are damaged first.
Later, breathing and swallowing difficulties may occur.
Most patients have no cognitive impairment, although a small proportion (about 5%) suffer from dementia associated with the frontal lobes.
A larger proportion of patients (50% –30%) undergo slight cognitive changes, which are probably not diagnosed, but are exposed on neuropsychological examination.
The sensory nerves and nerves associated with the autonomic system are not damaged, so most patients maintain senses of hearing, sight, touch, smell and taste.
Buds of hope
In a conversation with Efrat Carmi, CEO of ALS Israel, she tells Israel Today that "First of all, I call on everyone who has been diagnosed to contact us, we accompany the patients to the end throughout all stages of the disease and we are very helpful to the person.
Beyond that today even though there is still no cure for ALS not everything is black and there are buds of hope.
"I assume that in the coming years there will already be some kind of treatment or medicine or cocktail of medicines (which is the general direction we are going) that will help a lot and in the future maybe for patients of another 15 years there will already be real treatment."
"We are talking about about 600 patients in Israel, with 130 patients joining every year, and this is also the number of patients who die. Beyond that, the statistics are correct and people live between 3-5 years, but I have seen patients who have been sick for more than ten years. His life expectancy. "
Efrat Carmi added that "there is no one route to the disease and there are those who live with it a lot and there is less. Each person has the personal route of the disease and therefore there is no need to determine how much a person will get sick and how much he will survive. Some people live a lot and some live less. .
Efrat adds that "the disease has been known since the 19th century and today there is progress and experiments, as well as research on the disease. The world is moving in the direction of a good understanding and finding solutions to the disease in the future."
18 years of dealing with the disease
Although a large percentage of patients do not live long with the disease there are those who live with it for many years.
We have previously conducted an interview with such a patient in "Israel Today".
Avichai Kramer (47), who has been bravely dealing with ALS for 18 years.
Kramer and Ella on the motorized chair, on the way to the park.
"Can't do anything but look at her", Photo: Efrat Eshel
Kramer is one of the most well-known ALS patients in Israel, and certainly one of the oldest patients with the disease, he says, from the moment he received the bad news, he always made sure to maintain inexhaustible optimism, and his story of dealing with the disease is medically surprising.
In an interview with "Israel Today" he told about the paternity of Ella, his 6-year-old daughter, he said that "there is no doubt that being a father in this situation is complex and difficult. I experience many moments of frustration and miss. I so want to throw Ella in the air and catch her, like fathers Others. Tickle her. Caress her. Go camping with her. Teach her to ride a bike. Even for those who are sick I'm sick. But I love you even now. "
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