Introduction to Frontal Temporal Dementia
In the United States, one of three people will face memory loss or dementia. Linde Jacobs lost her mother in 2022, which makes it difficult to be a mother for two young daughters. She has to fight how to get mourning and bypassing. She fights to ensure that her daughters see strength and resilience.
A Genetic Legacy
Apart from years of love, Jacobs’ mother also gave her a cruel gene that causes a state of diagnosis to make an almost impossible illness. Jacobs’ mother, Alison Lee, was a proud mother of three girls, a successful physiotherapist, and a loving grandmother. But when she became 50, life became upside down. Some of her impulses would be to touch people in public. So if she saw someone, she would pull up a man’s pants because she said: ‘I can see your underwear.’ She was limitless, she did not recognize the social norms that we are appropriate, said Jacobs.
Diagnosis and Struggle
Jacobs, a nurse himself, opened doctors to obtain information. They were told that it was depression, but she knew that there was more. In the meantime, Lees continued bizarre behavior. She started shoplifting and after she had dilated a traffic stop, she ended up in prison. Jacobs’ sister received a letter from a colleague who said: "Your mother doesn’t belong here, I think she has dementia." It was confirmation when they first examined someone in this and say that this is dementia, said Jacobs.
A Stranger’s Kindness
It turned out that this inmate, which is only known as "Angie", was correct. That was in 2018, and Jacobs are still amazed at the gesture. The incredible goodness of a stranger, to know that she not only recognized this, but also recognized my mother as vulnerable and then kept her healthy, said Jacobs. Jacobs now had a clear path thanks to a stranger that she could never thank.
Understanding FTD
But with the context of dementia, Jacobs could find out a lot. She remembered that her grandmother had similar impulsive behaviors. It was genetic – it was the Mapt mutation of the frontal dementia, which was known as the FTD. It is an illness that hits 50 and instead of losing memories, patients often lose impulse control and self-confidence.
A New Purpose
Jacobs realized that there was very little information about Mapt. She could hardly google the condition that she would certainly have. Then she and her husband happened to see a documentary about the gene processing. And so he only searched Google "FTD, Crispr", and then we came across a doctor who is based in San Francisco, Dr. Claire Clelland, said Jacobs.
Hope for a Cure
In a busy laboratory on the other side of the country, Clelland received an e-mail. I am contacted by patients, especially by gene wearers from all over the world, but I remember that I only answered that I would try to help as well as possible, she said. That was the beginning of a powerful friendship. Jacobs set out on an Advocacy trip across the country, spoke to the country’s top neurologists and made them better understood this tricky and brutal illness that has 40,000 Americans and essentially put FTD on the map.
A Breakthrough
According to Clelland, Jacobs’ personal touch fueled the process. And if you look at new therapies that make it through the pipeline and actually come to the patients, you often have patient supporters and champions who do not give up, even when the work is really hard, said Clelland. And Jacobs landed this hard work on the front page of the New York Times. From her frustration to her grief to this letter of this occupant, she explained her story for the world and gave her even more opportunities for revelations such as the one she had in a research laboratory from the University of Minnesota in February.
A Symbol of Hope
There she saw a mouse with the frontal temporal dementia mutation she has. This mouse is a symbol of hope. It is part of promising research at the University of Minnesota. Linde sent me an e-mail, she is actually the first FTD patient I’ve ever met, said Dr. Michael Koob, who heads a team of researchers. Koob and his students achieve promising results for treating people who know that they have the gene. So, for them it is only a matter of time. That will happen. You know, I am quite confident that there will be an intervention that will work, said Koob.
A Reunion
After years, Jacobs finally found the inmates who sent her the first letter about her mother. She wrote to her on Facebook and the two have set up a while to meet. When Jacobs hit Angela Olson, the tears made up. I have no idea what the Lord does. I find it amazing that he brought our lives together. I never noticed that I wrote this letter what it was, right? I only knew that your mother was a really great person and needed help, said Olson.
A New Partnership
Now Jacobs has another partner in her fight to honor her mother and protect her daughters. She was recently invited to a gala in New York, with Anna Wintour from Vogue to collect donations. They collected $1.9 million for the dementia of the frontal tap. Jacobs and Olson are now working together to raise awareness and funds for FTD research, and their story is a testament to the power of kindness, compassion, and determination.
