For the past 23 years, I’ve been sharing my life with Thierry, my companion, my sunshine, my confidant, my lover, my support, my friend… and my husband for the last 10 years.
I’m very proud to be the mother of a wonderful daughter, Magali (40), who is passionate about her job as a massage therapist and lithotherapy consultant. She is raising my two wonderful grandchildren, Ines (12) and Hugo (9), on her own. It’s a pleasure to look after them during the school holidays.
As a social worker, I was in charge of a crèche for around 15 years. It was such rewarding work, but it was also exhausting. Last year, I was had to retire because the progression of Parkinson’s disease meant I could no longer cope with my professional life.
I love reading, nature, cooking, travelling, creative crafts, especially shell mosaics.
When did you learn that you had Parkinson’s disease, and how were you diagnosed?
Following a burn-out, I was increasingly affected by tremors and my doctor sent me for a check-up with a neurologist. After the DaTscan, the diagnosis was clear: “You have Parkinson’s disease”. An uninvited guest that for the last 8 years has been restricting my life.
What was your first reaction? And how has that changed over time?
Total meltdown! I’ve been trying to understand: why? how? what caused it? what will be the consequences? For the past eight years, I’ve been filled with anger and loathing. And I still wonder how much time I have left before the inevitable degeneration.
I’m a prisoner in a body that no longer allows me to live freely! My only freedom is to be able to count on the unfailing support of Mi Amor, my husband.
What impact has the disease had on your life?
At the beginning, I had some small hope that with medication, hydrotherapy, occupational therapy… I was going to beat this bloody disease. Reality caught up with me: my body’s failings were piling up and it was impossible to ignore them.
I threw myself wholeheartedly into shell mosaics, with the enthusiastic encouragement of those around me. To this day, I’m on stand-by, I just feel like I’m ‘tinkering’ to ‘forget’.
What’s one symptom of the disease that you’ve discovered that you didn’t know about before?
It’s the discovery of several symptoms that were present in my body before the diagnosis; symptoms that are the clinical signs and pathological changes of this disease: sleep disorders, dystonia, constipation, the reduction in size or rather illegibility of my handwriting, the reduction in my concentration, the slowness of my movements, the lack of sense of smell, tiredness, osteoarticular pain, etc.
How would you explain Parkinson’s disease to those who are not familiar with it?
I explain that Parkinson’s disease is a chronic, progressive and incurable neurodegenerative disease. I also mention the fact that 40% of people with Parkinson’s don’t shake. If I have the opportunity, I insist on explaining that this disease comprises more than 200 symptoms and that each Parkinson’s sufferer develops some of them with fluctuating and painful intensities that are specific to each individual. Each Parkinson’s disease is unique.
What is the greatest challenge/difficulty with Parkinson’s disease?
Personally, the biggest difficulty with Parkinson’s disease is dealing with the symptoms and the major side-effects of medication.
My greatest challenge is to be able to make long-term plans. My extravagant utopian challenge: to be cured!
In addition, what I really miss is the support/listening ear for my closest carer, my husband, who has legitimate anxieties that are so different from my own. Strangely enough, his mutual insurance company refused to recognise him as a carer. I don’t know why.
How have your relationships with other people changed since your diagnosis?
Around me there are people who understand and accept Parkinson’s disease; others who are insensitive because they don’t know enough about it; and finally, those who are convinced that it’s not real. A natural division has taken place in my relationships.
How do others support/could they support you?
My mainstay is my husband. He’s the only one who knows about my pain and recognises it without me saying anything about it. In my day-to-day life, I don’t complain, but from time to time I’d like to find a shoulder to cry on.
What’s a ‘trick’ that helps you relieve one of the symptoms of the disease?
Depending on what ails me and what I’m feeling, I revitalise myself through contact with nature: listening to the birds, walking in the forest, hearing the sound of the waves, sitting by a waterfall, savouring the flames of a log fire, walking along a deserted beach, swimming in the sea, etc.
What positive thing, if any, has Parkinson’s taught you?
There’s nothing positive about Parkinson’s apart from the daily wonder of having a companion who loves me as I am, with my abilities, my personality, my mood swings, my pain, etc.
What gives you energy? What gives you hope?
There’s physical energy and mental energy. Every day, I try to balance these energies in very short-term projects.
Hope means finding the miracle cure to eradicate this disease.
My hope is to live in the sun all year round, because my pain is reduced in a milder climate and my state of mind improves with sunlight.
What advice would you give to someone who has just been diagnosed with Parkinson’s disease?
To someone who has just been diagnosed with Parkinson’s disease, my advice would be:
- don’t be afraid to talk about their illness
- be physically and intellectually active
- find empathetic therapists who have a good knowledge of the disease
- learn to ask for help
- learn to appreciate the present moment
What is one motto that you particularly value and try to live by?
“When it comes to the future, it’s not a question of predicting it, but of making it possible”.
— Antoine de Saint-Exupéry
Uninvited, Parkinson’s came into my life. This intruder quickly challenged my creativity. Shell mosaics allow me to search tirelessly, day and night, for the right fragment.
At the same time, day and night, I look for ways to adjust my altered fragments.
As long as my Parkinson’s disease continues to provide the ‘stimulation’, it’s impossible to resist this creative dynamic, which enables me to feel the pleasure of being alive.
Véronique (alias Nicky)