Simple, sound advice for someone newly diagnosed with Parkinson’s disease from a woman who has helped thousands deal with this life changing pronouncement and wondered what to do next. Jo Rosen founded Parkinson’s Resource Organization (PRO) in 1990 after searching in vain for support and information about this chronic illness that affected two loves of her life – her husband and her mother.
Parkinson’s is a movement disorder that can affect many parts of the body, from the brain, to the eyes, throat, lungs, heart and other organs. It is a disease that currently has no cure and over time can impair and inhibit movement within the entire body.
Reaching beyond a sense of helplessness and the intense pressure of feeling solely responsible for caregiving, Rosen realized her life’s calling. She knew she was not the only person dealing with Parkinson’s and certainly not the only one seeking educational and emotional support. Research indicates that there are at 60,000 Americans diagnosed with the disease each year and more than 10 million people are living with Parkinson’s worldwide
Armed with grit and determination, she created PRO with the mission to work so that no one is isolated because of Parkinson’s. Her crowning achievement is The Wellness Village, which resides online at www.parkinsonsresource.org. Here, visitors can search for a wide variety of partners who support those living with Parkinson’s disease, their family members and caregivers in a multitude of ways. It is a curated directory of fully screened and vetted resources to ensure those seeking assistance will find a trusted partner to help meet their needs.
Cambrian Homecare is one example of what The Wellness Village offers those living with Parkinson’s disease. Dedicated to providing caring and capable homecare solutions for people of all ages and at each different stage of life, Cambrian’s listing includes a video message directly from the founder and president of the company. The Wellness Village directory is searchable by location and business type, incorporating video messages that allow the visitor to learn what each company offers and the ideals upon which they are founded. There is such a wealth of information and guidance available, it is recommended for anyone interested in planning for their future and living their best life, regardless of whether or not they are dealing with Parkinson’s disease.
Jo Rosen’s advice goes far beyond simply breathing and PRO provides the Parkinson’s community much more than a cohesive network of expert professionals. She may be most proud of the emotional support available through the organization. Helping people move through the stages of grief, from denial, anger, bartering and depression to the final stage of acceptance is what matters most to Rosen. She states that the quicker a person can arrive at accepting their reality, the faster they are able to start the most important job they now have – taking care of themselves. This also applies to primary caregivers and her sage advice is to exercise regularly, learn to meditate or destress, and eat healthy. Simple things that admittedly take effort but can pay dividends in extending life and maintaining the highest achievable quality of life.
Support groups are available for each segment of the Parkinson’s community: for people of different ages and stages of life, to family caregivers and professional service providers. Specialty support groups are constantly evolving and can cover a multitude of subjects. Recent topics have included sleep quality, dealing with anxiety and mindfulness. One-on-one emotional support with credentialed experts is also offered by PRO as people walk through their journey with the disease.
No one person alone can care for themselves or another with Parkinson’s all the way through their life. It takes a village and PRO has one that welcomes all.