Her first symptoms were severe fatigue and then a loss of smell: Karine is one of the 150,000 French people suffering from Parkinson’s disease.
- After several warning signs of Parkinson’s disease, including severe fatigue for several years and a loss of smell at age 40, Karine was diagnosed with her condition in 2014, at age 50.
- Other symptoms now weigh on his daily life, including dystonia in his left arm, emotional disorders and even a loss of balance.
- But the sixty-year-old prefers to put her situation into perspective: “In fact, you have to adapt every day to an illness that damages you. I try to be happy every day, whatever happens.”
“I had been feeling terribly tired for several years, but I put it down to work because I was working 12-14 hour days with very short nights… I also completely lost my sense of smell at the age of 40.“, Karine explains to me, recalling the first signs of her illness. Finally, after 20 years of practice, fatigue got the better of the general practitioner who decided to change jobs to take up the position of medical advisor at Social Security. “For two years, my fatigue calmed down. Then I decided to do training to become an occupational physician and that’s when I started having falls.“The forty-year-old then broke her fibula and fell into a severe depression. This was followed by an acceleration in the onset of symptoms: “In the same week, one of my hands started to stop working very well and I started dragging my left leg. I had several tests, including a PET scan that showed a lack of dopamine in the brain. The diagnosis of Parkinson’s disease was made in early 2014.”
Parkinson’s disease causes him to “need a monstrous amount of sleep”
Parkinson’s disease is characterized by a progressive degeneration of dopaminergic neurons. The lack of dopamine, which is a neurotransmitter essential for neurons to communicate with each other, leads to various motor disorders (slow movements, balance disorders, tremors, involuntary movements, etc.) and non-motor disorders (sleep disorders, smell disorders, fatigue, dementia, depression, etc.).
“I have always been a very dynamic woman, so when I was put on disability after three years, I had to find other activities.“, the mother of four tells me energetically.I started doing gymnastics, I passed a vocational training certificate in sewing, I did some painting… And then the fatigue increased and I realized that I could no longer get up early in the morning, I needed a huge amount of sleep.”
To this day, Karine is no longer able to wake up before 11 a.m., or even noon. A shame for someone who has not slept more than four to five hours a night for most of her life. However, it is out of the question for the former doctor to let herself go.The first thing I do is sport! I go for a walk, always very quickly and taking big steps so as not to fall, I do yoga, I go to the gym… I also got involved in the association France Parkinson to keep myself occupied intellectually and I retook a medical expert diploma.”
Fatigue is compounded by severe pain in the left arm: “I suffer from dystonia, my hand is curled up on itself like a little snail, so I do botox in my arm… to deparalyze the muscles!“, she tells me with humor. But the illness also affects Karine on a psychological level. “I shake all over at the slightest emotion, even the slightest. I sometimes have very dark thoughts even though I am naturally optimistic, so I am on antidepressants.”
“I felt like I was getting old overnight (…) so I’m going to do my best to make this old age as long and enjoyable as possible!”
The latter also takes an anti-Parkinsonian drug, Sinemet. This aims to compensate for the lack of dopamine in the body, but in her case, it does not work very well.This is not luck, we are doing research to understand why…“However, the sixty-year-old, whose mother is also affected by the disease, prefers to put things into perspective.”My mother, also a doctor, is slowly dying of Parkinson’s disease. But at 85, she is still alive, she is an example for me! In fact, you have to adapt every day to a disease that damages you. It is a curve that descends inexorably so I try to climb as best I can with another curve, in particular thanks to sport, activities that I enjoy like sewing and DIY, and above all of course, thanks to the people around me. My family is lovely and my friends are extraordinary, it is very important to continue.”
And what is the most difficult thing about having Parkinson’s disease?At first, I thought, ‘great, I’m going to have time to do everything I couldn’t do before’. But in fact, you can no longer direct your life as you wish, which is very hard on a moral level. For example, as futile as it may seem, I am forced to dress in simple, comfortable clothes even though I am extremely stylish and I love pretty things. Another example, when I have more than three things to do in a day, I quickly feel overwhelmed… In fact, I had the impression of becoming old overnight, without having had time to get used to it. So today, I am going to manage to make this old age as long and pleasant as possible! I try to be happy every day, no matter what. I still have many projects and I hope to realize as many dreams as possible, to continue to see people, especially my three grandchildren.”