Morning’s with Dystonia
Dystonia: Painful, prolonged muscle contractions cause abnormal movements and postures, such as a foot turning inward or the head tilting sideways. The symptoms usually begin in one body region — neck, face, vocal cords, arm or leg — and, in some cases, may spread to other parts of the body. The severity varies from person to person.
Dystonia has to be one of my least favourite symptoms. It comes to get me in the morning sometimes at 4 AM sometimes at 7 AM. I'm trying to get up and get my daughter ready for school. It's excruciatingly painful the way I would describe it is similar to a swimmers cramp x 10 that never let’s up. It’s always there with me in the morning until my meds kick. Sometimes it's so painful I can't get up and move. And I just sit there and count the minutes until my medication can kick in.
But sometimes I can take up to 30 to 45 minutes and when you have to get things going on your day off to school and start your job that's impossible.
Living with YOPD means encountering complex medical terms, and learning to decipher what is actually a Symptom or Side Effect. My goal with this series is to demystify these terms and provide clarity for people with yopd, friends and family. If we can have a better awareness of what is happening in our own body we can learn so much more about how to manage this disease from within, and we can also support each other so much more if we understand.
Navigating life with Young Onset Parkinson's Disease (YOPD) introduces a myriad of challenges, with dystonia standing out as a particularly formidable foe. Dystonia manifests as painful, prolonged muscle contractions, causing abnormal movements or postures, such as a foot turning inward or the head tilting. Its unpredictability and intensity can vary, significantly affecting daily activities and quality of life.
My personal journey with dystonia has been fraught with moments of intense discomfort and frustration, especially during early mornings. The experience can be likened to enduring an amplified cramp that persistently clutches at my muscles, hindering my ability to start the day. This symptom, though often overshadowed by other aspects of YOPD, requires a spotlight for its profound impact on those it touches.
Dystonia's presence in Parkinson's disease is multifaceted, occurring at different times and stages of the condition. It can act independently of movement, such as toe curling while at rest, or be triggered by attempts to use the affected body part. This variability underscores the complexity of managing YOPD and highlights the necessity for tailored treatment strategies.
Addressing dystonia involves a comprehensive approach, balancing medication management, physical therapy, and in some cases, interventions like Botulinum toxin injections. These treatments aim to alleviate the discomfort and improve mobility, but the journey is highly individual. I personally have chosen to forgoe Botox injections as I I've seen the negative affects of what you can do to your body and muscular response in the long run.
Through "Pretty Dope Women," I aim to demystify the experience of living with dystonia and YOPD. By sharing my story and integrating factual information about the condition, I hope to foster understanding, support, and empowerment among those navigating similar paths. Together, we can face the challenges of YOPD with resilience, courage, and a sense of community.
This account not only sheds light on the realities of dystonia within YOPD but also emphasizes the importance of awareness, comprehensive care, and the power of shared experiences. As we continue to explore and understand these complex symptoms, we pave the way for better management and support for everyone affected by YOPD.
