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Having gone through the early stages of my Parkinson's diagnosis, I've left behind the challenging period known as the diagnostic journey. The diagnostic journey, or medical odyssey, refers to the process of seeking a diagnosis for a particular condition, but not yet knowing what it might be. It's a time when: You meet with numerous specialists You undergo many tests You often have to take time off from your obligations It disrupts family balance It affects mental health stability Most importantly, it can last a long time! Here are my tips for navigating the diagnostic journey based on my personal experience Be kind to yourself! Take care of yourself. Take time for what's important to you. You won't go through many diagnostic journeys in your life. Be gentle with yourself. Take days off, treat yourself to flowers, do what you love. Avoid reading blogs, articles about all possible diagnoses. Avoid watching videos on the subject. Instead, take note of all your concerns and questions. During appointments with specialists, give yourself permission to take your time to ask all your questions. When the answers seem vague and unsatisfactory, allow yourself to rephrase your questions to get clear answers. "With your response, I understand that it's not currently possible to confirm my diagnosis, but what is your main hypothesis? And what is your secondary hypothesis? What makes you doubt?" Be accompanied to all appointments during the diagnostic journey: stress can make you forget what specialists say and advise. Be aware of what all this is making you experience, and try to relieve stress before it overwhelms you (exercise, sing, etc.). Consult a psychologist or healthcare professional to accompany you. Work on your tolerance of uncertainty: "If tomorrow I get hit by a vehicle and die, will the time I spent worrying today seem well spent at that moment? What would make more sense for me to do or think?" Remember that you are not alone! This period is temporary, and although the diagnosis may be frightening, the future is often not as bad as we anticipate. Best of luck, Psychopine

According to Dugas et al (2017), "intolerance of uncertainty can be described as the difficulty in accepting the fact that it is not completely impossible for a negative event to occur despite its low probability." With the confirmation of having a neurodegenerative disease (or any other serious illness), what is difficult to accept is that a potentially dark future is announced, but we do not know exactly what will happen, how it will unfold, or even if we will truly experience this degeneration (science evolves, life is full of twists and turns). Give importance to the tolerance of uncertainty Tolerating uncertainty is essential to continue flourishing. Otherwise, it's easy to be overwhelmed by worries about a potentially grim future. Tolerating uncertainty means recognizing that there is no way to predict the future. It's allowing oneself to live a fulfilling life even in the face of the risk that things may become difficult in the future. It's choosing to adopt behaviors that reflect this tolerance. Reduce the search for certainty as much as possible A neurodegenerative disease can progress in various ways, ranging from less to more degenerative. There may be a strong desire to read testimonials from people who have the same illness as us to become aware of all the possibilities and to try to determine how we will fare in the future. When we come across stories of people who are completely unlike us, we may be relieved and think that it means we won't have that experience. When we instead find the story of someone who seems to have similarities with us, we might think that our future will be similar to theirs: "Claudie is young like me, also has children, exercises and does everything necessary, takes the same medications as me, and besides, we both love banana cake, clearly my future will resemble hers." But the reality is that predicting the progression of the disease is not possible, even if we resemble Camille or Sandra, even if we are completely unlike Pierre or Jean. It's normal to feel powerless and helpless in the face of the lack of control and certainty about our own future. But this search for information is ultimately not very useful. The analogy of the Sword of Damocles Denys the Elder, tyrant of Syracuse, lived in a castle surrounded by a moat and constantly under the watch of numerous guards. Denys, always on edge, moved among courtiers who had to flatter and reassure him. Among them, Damocles, king of the goldsmiths, continually flattered his master about the luck he had to be the tyrant of Syracuse. Annoyed, Denys offered him to take his place for a day. In the middle of the feast, Damocles looked up and saw a sword suspended above him; this sword was held by a hair of Denys's horse. Some say that this sword was suspended by the tyrant Denys himself. Thus, he showed Damocles that his role as a tyrant had two sides, it was both a feeling of power and the risk of a "death" that could strike at any moment (Wikipedia 2023). The Sword of Damocles is held by a horsehair, and therefore could fall at any moment. If Damocles constantly watches it, will he be able to avoid it when it falls? If he informs himself about the strength of the horsehair, about the risk of the sword falling on him, will he be less surprised when it falls? If he doesn't move to avoid any gust of wind, if he really does everything that is recommended to prevent it from falling, will he be able to avoid it when it falls, will he suffer less? When we receive a diagnosis of illness, we suddenly think that a sword of Damocles is hanging over our heads. We search for certainties to control something that cannot be controlled. When the sword falls, we don't know what will happen, and no one can claim to know. Not even experts in horsehair, sword experts, or gravity specialists. It's better to enjoy life During my diagnostic process, we were also in the midst of researching to buy a property. For several weeks, I thought it was a bad idea to become a homeowner. After all, I had a sword hanging over my head to watch out for, didn't I? The worst scenario I anticipated was that I would become completely disabled and wouldn't be able to pay a mortgage, so what's the point? The difficulty of accepting that something serious could happen to me played tricks on me by distancing me from my dreams and projects. What message would I have sent to myself if I had chosen to give up this project because of the risk of becoming disabled and unable to pay a mortgage? Especially since no one can predict if it will happen to me, when it will happen, and how it will unfold! Would I have understood that my life is now over? That since there is a risk, it's better not to engage in life? Get support Don't hesitate to consult a psychologist to accompany you in this journey. Since receiving the early Parkinson's diagnosis, I have never embraced life more fully. The risk exists, but life is worth living. Best of luck! References Dugas et al (2018). Guide to practice for the diagnosis and cognitive-behavioral treatment of generalized anxiety disorder. Retrieved from https://tccmontreal.files.wordpress.com/2018/09/guide-de-pratique-tag-isbn-2018.pdf Wikipedia (December 2023). Damocles (mythology). Retrieved from https://en.wikipedia.org/wiki/Damocles_(mythology) Dugas et al (2018). Guide de pratique pour le diagnostic et le traitement cognitivocomportemental du trouble anxiété généralisée. Retrouvé sur https://tccmontreal.files.wordpress.com/2018/09/guide-de-pratique-tag-isbn-2018.pdf Wikipedia (décembre 2023). Damoclès (mythologie). Retrouvé sur https://fr.wikipedia.org/wiki/Damocl%C3%A8s_(mythologie)