It was when the pain started that she became worried.
Alzheimer’s disease is a neurodegenerative pathology that results in a progressive loss of memory and certain cognitive intellectual functions. The disease has serious consequences in daily life. On the occasion of World Alzheimer’s Day, September 21, we spoke with Sylvie who learned that she was suffering from the disease at only 49 years old.
The first signs started when she was 48 years old. She was a nursing assistant. “I was getting lost in the corridors at work, I was very tired, I got carried away quite easily. I had mood swings, I could be very depressed as well as very happy.” These initially trivial details then became more serious. “I forgot patients in some rooms, I made mistakes with medications, meal trays.” But the signs do not alarm him. “I wasn’t worried about memory problems. At home, my husband hadn’t noticed the symptoms that much. I would sometimes find my keys in the freezer, find bleach in the fridge… But since I was very tired at work, I thought I was burning out.”
“I first thought it was multiple sclerosis”
Then pains started to appear, confirming that something deeper was wrong. “I had a lot of neuropathic pain: pain in my hands and legs. I was weak and it was starting to worry me. One evening when I was reading in bed, I lost sight in one eye for about fifteen minutes. I thought I was having a stroke. The next day, I went to the doctor, she put me on Aspégic® to thin the blood and I went to have an emergency MRI.” Then begins a long diagnostic process for Sylvie.
The announcement of the diagnosis
For her doctor, the first test results are not worrying, but Sylvie decides to continue the research. “I initially thought it might be multiple sclerosis, because muscle and memory problems are also symptoms. So I made an appointment with a neurologist.” At the day hospital, Sylvie performs blood tests, lumbar punctures and neurological tests. “The neurologist really looked into what I could have. The results came back one after the other, except one, the biomarker results. They were going to be given to me by the neurologist.” In the meantime, Sylvie does some research on the Internet and comes across the dreaded word “Alzheimer’s”. Three months later, the diagnosis is confirmed by the specialist, almost a year after the first signs began. “Diagnosis is an obstacle course.”
“The neurologist was great”
During this interview with the neurologist, Sylvie shows resilience. “I expected it. The neurologist was great, he told me calmly and gave me a lot of hope. I stayed in his office for an hour and a half asking my questions.” Her husband, who was present at the meeting, was more discreet. “My husband didn’t say anything. I feel like he was in a big shock. Even today, he doesn’t express much of what he felt.”
Reorganizing daily life to adapt to the illness
After the diagnosis, daily life had to be reorganized. “As soon as I left this interview, the neurologist put me on work disability, telling me that my situation was dangerous for patients. I also claimed this disability because I could see very well that I was making more and more mistakes. But from an administrative point of view, requests for assistance after disability are very long.” Daily life at home also changes for the couple. “A few days after the diagnosis, my husband had to take 4 months off for work. I found myself alone and I couldn’t manage my daily life. I forgot the lights, the gas… I could leave by leaving the garage door wide open. Daily life alone was very stressful. Fortunately, my mother came to the house regularly.”
“If my illness is stable it is because I am active”
“Now that my husband is retired, I rely on him, everything is organized with him. He takes care of the administrative work, he goes to get the mail from the mailbox because I don’t think about it, I cook with him because I can skip meal times.” Alexa, the artificial intelligence application from Amazon©, also helps him a lot in his daily life. “When my husband is not there, she reminds me of my appointments, she also tells me to take my medication, to drink, to eat…”
Sylvie is now 54 years old, her illness has been stable for 5 years. “In my daily life, I find that the progression is not obvious. But if I am stable, it is because I am active, in particular by going to workshops offered by France Alzheimer and I practice adapted physical activity. I think that staying as active as possible is the best way to prevent the disease from progressing.”
