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Young Onset

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Talking About Young-Onset Parkinson’s

Davis Phinney’s diagnosis with young-onset Parkinson’s disease (YOPD) came after months of searching for answers. Vague symptoms combined with his young age and high level of physical fitness led doctors to seek answers elsewhere, a story with familiar themes for many people who have been diagnosed with YOPD after months or years of medical dead ends.

From the shock and disbelief of diagnosis, through withdrawal and depression, and eventually to acceptance and the realization that there is much life yet to be lived, Davis’ story provides a platform for meaningful conversation about YOPD. To encourage this conversation, the Davis Phinney Foundation has developed a special discussion guide to help people living with YOPD dig deeper into themes explored in Davis’ memoirThe Happiness of Pursuit. Download the discussion guide as a way to facilitate discussion with your family, within a book group or a Parkinson’s support group.

Although most people associate Parkinson’s with the elderly, Parkinson’s disease can affect people of all ages. Young Onset Parkinson’s (YOPD) begins before the age of 40. Sometimes, people can get caught up in the YOPD label because the word “young” conjures attitudes and self-image issues, along with the diagnosis itself. For example, a fit, active person of 55 might identify more with the YOPD label, but medically speaking, he or she does not fit the classification.

There are some differences between YOPD and older onset Parkinson’s. Although the cause of Parkinson’s is not known, research studies suggest that genetics may play a bigger role in YOPD compared with older onset. YOPD also differs slightly in the symptoms one might experience and in the response to medication.

People with YOPD will live with the disease for many years and need to find ways to adapt to Parkinson’s and its effect on their lives. They need to consider how to manage a chronic disease while engaged in career, perhaps raising a family – or even starting a family – and maintaining as high a degree of wellness as possible for as long as possible. As a person with YOPD, you are in a unique position to take charge of your healthcare. You and your healthcare team will be working together to keep you healthy for many years to come. Being a strong advocate for yourself and planning for living well for the long term are critical steps to take. You can learn more about YOPD in the Every Victory Counts™ program for living well with Parkinson’s.