Clinic – apartment – forest: life with ALS

From the window of the Yemelyanovs’ house, you can see the growing neighborhoods of the new buildings and the Chobotovsky forest. Not long ago, the couple worked, traveled, met friends. Today, life has narrowed down the route “doctor’s office – apartment – forest”.

Fate, or tragic coincidence

In 1991, the Emelyanovs’ eldest son, Sasha, drowned in the White Sea. It was ten, in the summer he went to visit his grandparents. Grandpa had cancer, he asked: “Bring Sasha”.

He and a friend went boating, the wind picked up. The boat capsized, Sasha was under it. Sergei Gemelyanov searched for three days for his son’s body with a hook.

His grandfather died a year later, in 1992. His wife, Sergei’s mother, fell ill with an unknown disease. Later it turned out – ALS.

“It all started with the thumb on the right hand,” says Sergei. – We thought it was on her nerves, after the stress. But none of the doctors could say anything for sure, they just shrugged.

Until 1997, Alexandra Alekseevna lived alone in Belomorsk. He faced: he cooked, he washed, only the finger did not obey and then the whole hand began to weaken.

“She kept sitting, stroking her hand, it appears in the video, even the youngest son was small,” Sergei recalls.

In 1998, he moved my mother to Moscow, took her to chiropractors, to a neurologist, they did a CT scan, an MRI scan – all to no avail.

At first, Alexandra Alekseevna traveled alone to visit visitors: her cousins ​​lived in Moscow. Sergei once asked his son to take his grandmother out into the fresh air. They went out and suddenly he fell.

“We did not have an elevator, then we lived in a shared apartment,” says his wife Sergei Valentina. – Sergei carried her to the fifth floor in his arms, put her in a chair. And that’s all. Her legs and speech immediately failed, she started salivating, stopped talking, eating and left a year later.

Sergei himself took care of his mother, he carried her everywhere in his arms.

Stroke

It never crossed anyone’s mind then that the disease awaited Sergei.

Scientists talk about two reasons for the development of ALS: in 90-95% of patients it is an accident, in 5-10% it is a genetically inherited mutation. Sergei got into that 5-10 percent.

A year ago, they were sick with Covid. Valentina had problems with her back, her leg was numb – and she is still not leaving. And Sergei had a tremor in his right hand.

“He went to a neurologist, but the doctor did not suspect a problem,” says Valentina. – In March, Sergei wore long-sleeved shirts, so I did not immediately pay attention. And then, as I saw it, I immediately remembered my mother and felt bad. I understood what it is. “

Photo: Maria Muravieva / ASI

The diagnosis was officially made in November 2021 at the Clinic of Neurological Diseases named A.Ya. Kozhevnikov, where Sergei spent 14 days. He was advised to go to the hospital of Agios Alexis. They said they now take patients with ALS only in severe form, already bedridden. Mothers take care of them.

Sergei returned home.

The right side of the body continues to weaken. Sergei and Valentina started walking less, but they still go out, they walk 8-10 kilometers every day.

“Last week we arrived in the author’s town, however, we were already returning by bus,” Sergei smiles.

In the past ZOE

Sergei is 64 years old. He worked as a welder, then taught for more than 20 years at a training center: he worked as a welder certification. Now retired.

Valentina graduated from the technical school of electronic devices, worked in various places, including the Babaev factory. She retired to take care of her husband.

There are many books in the house. There is also orthodox literature and fiction: “Reading is very supportive.”

Sergei has golden hands. He had one such hobby – burl crafts. We went to the forest with a saw, we looked for plants on the trunks, we cut them. At the Krasny May glass factory, where stars were made for the Kremlin, Sergei learned how to blow glass decanters.

Previously, they traveled a lot: in the apartment there is a whole museum with bells, brought from every trip. We went to monasteries, we liked coming to Godenovo, Pereslavl-Zalessky. They brought their first bell from Solovki, where they had already been found three times: “Holy place”.

Now that bells have become expensive, it is more difficult to replenish the collection.

“Now my son is bringing me bells,” says Sergei. “Sometimes I will take it to the temple. Now do you know how much they cost? Even that, probably already for a thousand. Iron small. And it was 400 rubles.

“Stacked on top of each other”

It is possible to live on two pensions, but it is difficult, says Valentina.

A lot of money is spent on medicines. They give for free, but you have to pay for something. When Sergei was diagnosed with ALS, he already had a “bouquet” of diseases, including diabetes and two heart attacks. We must make efforts not to “fight” the drugs: neurological pills do not match the cardiological ones. “One on top of the other,” sighs Sergei.

Shoba, a 15-year-old cat, has been suffering from diabetes for three years. He has to buy diabetic food, inject insulin twice a day and get blood from his ear once a week, which costs 3,500-4,000 a month.

Photo: Maria Muravieva / ASI

“You can not send him to the forest. A member of the family, says Valentina. – And go to the store, there buckwheat costs 190 rubles. They add a pension of 2%, 10% and immediately the prices start to rise “.

“However, you do not need to be depressed,” says Sergei. – They live with it. I’m not afraid of anything, I know everything perfectly. I know that the people who left also want to meet with us. Let it be in a year, in five, in ten – all is well.

But no one wants to be a burden, it’s difficult.

“My grandfather came from my father after a bath, 94 years old. He drank a shotgun, lit a cigar, entered the room and left quietly and peacefully. “It would be like that,” says Sergei.

What’s next

Sergei says that when you are diagnosed with ALS, you do not know how much is left: two or three years, five years … The doctor who consulted his mother said that young people who receive such a diagnosis usually live no more than seven years. If ALS appeared after 50, they live for 14, and for 18, and more. In 5% of cases, ALS develops very slowly, a person lives a long time.

At Agios Alexis Hospital I was advised to seek advice from the Live Now Foundation.

Natalia Lugovagia. Photo: Maria Muravyova / ASI

ALS is a unique diagnosis in many ways. The research has been going on for more than a decade.

“During this period, drugs were discovered for a large number of very different diseases, but, unfortunately, not for ALS. “To date, there have been no major discoveries,” said the head of the Live Now Foundation. Natalia Lugovagia. There are a number of drugs that are undergoing clinical trials. There are drugs in America, in Canada, that can be sold experimentally at the insistence of the ALS community. But they are clearly drugs that slow down the development of the disease. “Drugs that can stop ALS and even more to cure it have not yet been found in the world.”

Patients applying to the fund can get advice from fund experts on the course of the disease, the prognosis and possible difficulties. The team of the institution includes specialists in nutrition, respiration, physiotherapists, psychologists. If necessary, the Foundation can provide respiratory equipment for the purchase of equipment in the area, if not available, assist in the establishment of a gastrostomy, provide technical rehabilitation equipment, consumables and clinical nutrition.

Sometimes lonely people who do not have relatives turn to the fund.

“Without having a loved one, the patient is actually left completely helpless and at a certain stage will stop serving himself,” says Lugovaya. – And here, unfortunately, we still can not find a way out. Why in Russia, for single patients and for patients with difficult financial situation, there are no options for comfortable accommodation. The same veterans’ homes or boarding schools for seriously ill people do not accept people with ALS, mainly because there are no specialists who know how to work with respiratory equipment, gastrostomy. “People can solve such problems on their own.”

“Given how many new patients apply to the fund each month, unfortunately, we are not considering options for opening separate targeted programs and increasing targeted assistance,” Lugovaya continues.

The situation at the fund

Today, the fund is in a rather difficult situation, the vast majority of employees have not yet received their May salaries and so far the fund has not figured out where to find the funds to continue paying salaries. The Foundation applies for grants, writes applications, appeals to various companies, tries to restructure fundraising processes, focuses on PR, but the situation with fundraising remains difficult.

“This is not the first crisis in the fund. People are ready to keep working, going through difficult times and believing that we can overcome everything, but morally it is, of course, difficult, because we have obligations, families, children, loans, mortgages and when working at the fund is the only source of income, for people this is a test. “I want to believe that we will pass it with dignity,” says Natalya Lugovaya.

You can support the foundation’s work on its website.

This material is part of the project “NGOs – service providers and source of assistance”, which is implemented by ASI with the support of the Department of Labor and Social Protection of the city of Moscow. You can read more news and articles about the work of the Moscow SO Non-Commissioned Officers here.

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