NEW PRESENTER ANNOUNCED
Patrick announced that Dr. Ray Dorsey has agreed to talk to our group in July. Dr. Dorsey is a neurologist with a specialization in movement disorders. He directs the Center for HEalth and Technology (CHET) at the University of Rochester. The center’s purpose is to develop ways to offer care to anyone everywhere. In his book, Ending Parkinson’s Disease, A Prescription for Action he talks about advocacy and what people can do to help end Parkinson’s. Although we do not know his specific topic at this point, possible areas of discussion are the environmental impact, advocacy, PD warriors, and clinical trials.
This led to a general discussion about advocacy and how important it is, particularly for people with PD. Some of the large national organizations associated with aids, cancer, and multiple sclerosis, have been advocating for their cause for many years, which means they have a lot more money to do research and provide support than PD organizations. Patrick relayed his experience with trips to Washington to meet with congressional representatives and talk about the need for more support for PWP. There is a need for more front-line advocates.
EARLY and NON-MOTOR SYMPTOMS
A participant shared information regarding early symptoms of PD that he came across recently. He had not realized that these early symptoms: cramping of the toes (dystonia), crusty eyes, oily skin, and loss of smell might be a prediction of PD and may show up as much as 10 years before the diagnosis.
There are also several non-motor symptoms that the general public may not recognize as Parkinson’s. Some examples are sleep difficulties, fatigue, depression, memory loss, anxiety, restlessness, and digestive problems.
PWP agree, almost unanimously, that stress makes their PD symptoms worsen. This can happen even if the stress is positive, such as a wedding in the family. There was a general discussion about stress and the impact it can have on our symptoms. Some of the group members offered suggestions that have worked for them. It was clear from the discussion that stress management is a critical component of managing PD symptoms.
PATRICK’S FIVE PILLARS FOR OPTIMIZING QUALITY OF LIFE
Patrick has identified five concerns that he believes need to be carefully managed. The group discussed these five pillars and ways to manage them.
- Doctors Team
- Mental health/socialization