Uncover the inspiring story of an advocate for Parkinson’s who kept her diagnosis a secret for years.

She hid her young onset Parkinson's diagnosis for years. Now she's an 'unshakeable' advocate

“Unshakeable MD: Dr. Soania Mathur’s Journey with Young Onset Parkinson’s Disease

At the age of 28, while pregnant with her first child, Dr. Soania Mathur experienced a trembling feeling in her right pinky finger. Initially attributing it to her pregnancy, further testing revealed that she had Parkinson’s disease. Despite accepting the diagnosis from a medical standpoint, emotionally accepting it was an entirely different challenge for Mathur. For nearly a decade, she concealed her symptoms from all but her closest inner circle, going to great lengths to hide them. However, by 2010, the progression of her symptoms forced her to retire from her family medicine practice in Courtice, Ontario.

Embracing Advocacy and Empowerment

Turning her focus to teaching and empowering patients with young onset Parkinson’s like herself, Mathur has become a prominent figure in spreading awareness about the impact of the disease on younger adults. She co-wrote books about her journey with her children to educate young people about the condition and is actively involved in various advocacy groups and foundations. With the moniker of the “Unshakeable MD,” Mathur continues to share her story, aiming to make a positive difference in the lives of those affected by Parkinson’s.

Understanding Young Onset Parkinson’s Disease

Young onset Parkinson’s disease (YOPD) refers to cases where symptoms appear before the age of 40. While only about five to ten percent of Parkinson’s diagnoses fall into this category, the number of cases is on the rise. Symptoms in younger patients often progress at a slower rate and entail less dementia compared to older patients. However, there may be more involuntary movements that require management through medications. Despite the challenges, Mathur and others emphasize the resilience and strength of the Parkinson’s community, regardless of age.

Challenges and Triumphs of Diagnosis

Sharon Chakkalackal, diagnosed with young onset Parkinson’s at 38, shares her experience of facing delays in diagnosis. Many young people, like Chakkalackal, have to wait longer than older patients to receive a conclusive diagnosis. Stigma and lack of awareness about Parkinson’s in younger demographics can contribute to these delays. However, through support groups and access to resources, patients like Chakkalackal find solace in knowing they are not alone in their journey.

Breaking Barriers and Redefining the Narrative

By breaking stereotypes and raising awareness about Parkinson’s in the younger population, individuals like Chakkalackal are reshaping the narrative surrounding the disease. Engaging in physical activities, such as gardening, has not only helped Chakkalackal manage her symptoms but also provided her with a sense of community and purpose. Research underscores the importance of exercise in managing Parkinson’s, emphasizing its disease-modifying benefits.

Conclusion: Embracing Resilience and Empowerment

Dr. Soania Mathur’s story of resilience and advocacy serves as a beacon of hope for individuals living with Parkinson’s, particularly those with young onset. Through empowerment, education, and support, patients like Mathur and Chakkalackal are redefining what it means to live with Parkinson’s disease. As awareness grows and barriers are broken, a new narrative emerges, one that celebrates strength, community, and the power of self-care in the face of adversity.”



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