Solitude of frontotemporal dementia (released in 2019)

At the age of 66, Bob Carger was speechless. It wasn’t the sensation of his tongue that melted when he remembered the words he was asked for.He lost the relationship between sound and meaning — how banana Recall the soft yellow fruit or eagle Reminiscent of large birds of prey. In a recent conversation, he thought acorns were growing on pine trees.

Mr. Carger didn’t even know how to use the items around the house. When he picked up the can opener, he wouldn’t have noticed that it could remove the top from the can. If he had a hammer, he might not have known that he grabbed his head, turned around in his palm, and shook a nail. His world was full of incomprehensible items.

His wife, Sandy Karger, noticed other changes. When she told her husband about her family who had died, Carger laughed instead of comforting her. As they reminded him of a close friend, he slipped a $ 20 invoice on a stranger and overturned it. He stuck to obese people. “Look at that person, they are really fat,” he said in public. He overcame the impatience and pushed the people in line in the store forward. “Can you hurry?” He will yell. “Do you really need to buy it?”

Otherwise, Mr. Carger’s heart was sharper than ever. He was able to remember his upcoming plans and recent dinner. He didn’t repeat the conversation. His long-term memory was sometimes better than Mr. Cargers.

Two years after his symptoms worsened, Kargers was Dr. Murray Grossman of the University of Pennsylvania. Dr. Grossman is short and charismatic and is from the witty Montreal who has taught me since I started my neurology training. Over the past few decades, he has pioneered research into behavioral and language-altering neurodegenerative diseases. When he saw him. Karger in 2007 had a clear diagnosis within an hour. Karger was a type of frontotemporal dementia.

Frontotemporal dementia attacks people in 50 or 60 years, just as retirement approaches. Doctors believe the disease affects 60,000 people in the United States alone. The neurons on the front and sides of the brain wilt, along with them the old images that are growing peacefully disappear. Judgments and complex plans lead to chaotic confusion. Suppression is replaced by impulsivity and hypersexuality, so longtime loyal partners look to incidents and excessive pornography. Empathy turns into indifference. Obsessions and obsessions erupt. Language can be a hassle. Words and objects can lose their meaning, and fluent speech can blend into nonsensical grammatical sentence fragments. Jokingly, my memory remains almost untouched. Most people arrive at the therapist’s sofa long before they find their way to a neurologist, as the areas of the brain that determine personality often suffer first.

In the suffering of illness, many families look for others who may be experiencing something similar. “This can be very lonely, so a support group can help,” said Karger, now 80, who is co-leader of a support group for caregivers with frontotemporal dementia. She paused and repeated, “It can be very, very lonely.”

When I visited Mr. Karger this spring, Karger’s support group shared practical advice with members. “I’m having a hard time getting my wife to shower,” explained a common symptom of indifference. “It’s been five weeks.” Another man said the wetness wasn’t extraordinary, as he first put his toes or fingers under the faucet to bathe his wife. Third parties favored dry shampoos and baby wipes and recommended giving up altogether.

The man asked about attachment. With humor, people talked about items fixed by their partners. At a family wedding, I arranged the glasses, lined up dirty dishes with a panela, and made the pillows fluffy. “You can bleed and die, and all she wants to do is rearrange her pillows,” another man said.

A common theme has emerged: a partner who becomes a dependent and an adult who becomes like a permanent infant.I learned about the existence of Adult toothed toys.. One woman complained that her husband, obsessed with eating her stuff, could chew a toy within a day. He broke his tooth on the rock, she told us.

Ironically, when someone brought out social media, the conversation overtook. The people they admitted were jealous of seeing pictures of “ordinary” couples on cruises and golf courses. “Can they really be happy?” Someone asked. Many of the groups live in the extreme case of “we break up until we die.” They are alone, but they have an attachment.

Today, there is new hope for people with him. Carger’s disease. “About a quarter of cases of frontotemporal dementia are genetic,” he said. Grossman, head of the Frontotemporal Dementia Center at the University of Pennsylvania. In frontotemporal dementia, in contrast to Alzheimer’s disease, we are well aware of which genes cause this condition and which toxic molecules accumulate in the brain. “This allows us to build a rational treatment,” he said. Grossman said.

Biotechnology company Alector this summer Announce early results For drugs given to people with frontotemporal dementia caused by a mutation in a gene called progranulin.. People with mutated genes have abnormally low levels of progranulin protein, but those who received the drug saw levels increase to the normal range. Two more trials are underway for people with different genetic mutations that cause amyotrophic lateral sclerosis (ALS) but can cause frontotemporal dementia. All three studies seem to validate ideas that have been bubbling for years in the wider community of neurologists. Molecular-targeted therapy may be the future of dementia care. Some neurologists are wondering if dementia should be treated like cancer.

“Because frontotemporal dementia is often familial, people can be tested before symptoms appear,” he said. Grossman said. “By sequencing genes from blood samples, we can know which families probably have the disease. If we can slow the progression of those people, it’s effectively a cure.”

But science was too late for him. Carger. His condition is severe in current clinical trials and there are no mutations being studied at this time. For Mr. Carger, most days feel like a dress rehearsal for a widow.

“I have to allow myself to get angry and try to accept it, not judge myself,” said Ms. Carger. “My car heard more cursed words than you could imagine.”

People with frontotemporal dementia may live 10 years after diagnosis. As a result, caregivers experience years of progressive mourning. “This sadness is not official,” Ms. Carger wrote in a speech she gave to her fellow caregivers. “There is no casserole at the front door, flowers do not arrive, condolence letters do not arrive”

For now, Kargers continues to meet Dr. Grossman is in the office every few months for symptom management, but they often meet him at the local farmers market where everyone likes to shop. Mr Karger can no longer identify many of the items for sale. As part of his dementia, he has an obsession with shiny objects and a mysterious ability to find dropped coins. He collects them as they move from booth to booth. When he came across a doctor. Grossman, he shows off his discoveries. “If there’s a penny on the floor, he’ll see it,” he said. Carger says. “You and I never do that.”

Sala Manning Peskin is a Fellow of Cognitive Neurology at the University of Pennsylvania. She is working on a book about molecules that hit the brain.

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