Let your voice be heard

As PWP, we hear a lot about what the current medical therapies are that will help us feel and function better. We also hear about lifestyle changes we can make to also help us feel better and live well. Both medical interventions and lifestyle interventions significantly improve the quality of life for a PWP. How do you know the best approaches to take? There is continuous research and improvements in both therapeutic medical approaches and information on lifestyle interventions. There is so much more information available than 10 or 20 years ago, and research is continually learning more about all aspects of Parkinsons.

Currently there are studies being conducted that involve PWP sharing information about their personal experiences living with Parkinsons. This data is gathered to help researchers develop a better understanding of the daily lives of PWP. This in turn helps researchers make decisions about the direction of Parkinsons research. Your voice is very important in this type of approach to research. I have included the links to two of these studies. The first study is called Fox Insight. It is being conducted by the Michael J. Fox Foundation and focuses on a comprehensive view of the PWPs life with Parkinsons “from symptoms and quality of life to treatment satisfaction and research participation preferences”.

https://foxinsight.michaeljfox.org/about

The CAM Care in PD (Complimentary and Alternative Medicine Care in PD) study is being conducted by Dr. Laura Mischley at Bastyr University. This study is more focused on lifestyle interventions such as nutrition and exercise. The purpose is to find the behaviors that are associated with PWP who are progressing slower and functioning better than the general Parkinsons community. These insights will help give PWP a better direction when making these important lifestyle decisions.

https://bastyr.edu/research/studies/complementary-alternative-medicine-care-parkinsons-disease-cam-care-pd

Check out these studies. Your insight can be a valuable part of the continuing quest to find better treatments and improve the lives of all people with Parkinsons.

Written by Cidney Donahoo

Parkinson's Place