Be the Message for Parkinson’s Awareness

Jo Gambosi avatar

by Jo Gambosi |

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As one of my sister Bev’s caregivers, I always try to spread awareness about Parkinson’s disease (PD) to family members and friends to increase their understanding and advocate for her and others with PD.

Diagnosed with Parkinson’s at 78, five years later, Bev has stage 3 PD. But Parkinson’s also affects younger people, including those with early-onset Parkinson’s, which affects people ages 21 to 50. There wasn’t much public awareness about early-onset PD until actor Michael J. Fox disclosed that he was diagnosed with PD at age 29.

Generally, awareness about the number of people affected by PD, as well as the importance of research and treatment methods, isn’t widespread. But I believe this can be changed!

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No matter the age a person is diagnosed with this incurable disease, we as caregivers, family members, friends, and to some extent the patients themselves, can be advocates for PD. We can increase awareness of the disease among immediate family members and friends, and among our other communities and the public at large. We can increase the knowledge that PD is more than just “that shaking and stiffness disease.”

We can do this through education, support, fundraising events, and partnering with and directing people to organizations like the Parkinson’s Foundation, American Parkinson’s Disease Association, and other relevant organizations.

Just writing my column for Parkinson’s News Today and sharing it has increased my friends’ and family’s awareness of Bev’s PD, which hopefully has affected them in some manner.

Currently, there is no effective treatment that reverses PD progression, nor is there a cure. In addition to increasing efforts to educate the public about PD, we also need to escalate attention to funding for PD research. The Michael J. Fox Foundation for Parkinson’s Research has a wonderful summary resource available to urge members of Congress to increase funding for PD research and new drug development.

To anyone who knows someone with PD, please become an advocate.

Write the legislators representing your state, urging them to increase funding for PD research and the development of new medications.

I have written letters to my Arizona legislators and representatives in Congress about my sister’s experience, but also to let them know about the growing number of people being diagnosed with PD, and the need for more research dollars.

Compared with other chronic illnesses, federal funding for PD has remained relatively flat. You can write both the secretary of the Department of Health and Human Services and its committees for research and funding. Most federal funding for PD happens through the National Institute of Neurological Disorders and Stroke, part of the National Institutes of Health.

Spread the word at your local community center. Have your family sponsor an event night, and show them ways that they can support more funding. But also, try to increase their knowledge about PD.

In a past visit to Ohio, I added a “PD news brief” chat with family at a picnic. Bev became the star of the event by sharing her PD experience!

I hope you will decide to take action, no matter how small it may seem, to make a difference in the lives of those with PD.

Be the message. Stand up for those who may not be able to stand up for themselves.

***

Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.

Comments

LouAnn Redaelli avatar

LouAnn Redaelli

Yet another great and informative article! The articles regarding PD have been helpful in recognizing and understanding the effects of PD in a person, particularly my aunt Bev for which many testimonies have been written about. Getting involved with your loved one can help to encourage movement, balance, proper diet and other key factors. Sharing some of this information to others helps them to understand the disease more as well as how to be patient with those afflicted. Perhaps visit your community Senior center as suggested.......a good start!

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