Reaching the Newly Diagnosed
"You have Parkinson's. Here are your prescriptions for your medications, start an exercise program, and come back and see me in three months.”
That statement, or similar, from the doctor, is one that many newly diagnosed hear. There is often a gap between the doctor's medical advice at the time of diagnosis and additional information that might be helpful to the person receiving this news. So, where does the newly diagnosed person with Parkinson's (PWP) start to learn how to help themself? There is a lot of information available on the Internet, but it can be overwhelming, inaccurate, and sometimes scary. The newly diagnosed PWP should be able to access local resources to start living well with PD as soon as possible, but local resources can be challenging to find.
So where should the information come from? Should the doctors give out the info? Maybe. Probably. Yes. But do they have the time, the information, the inclination? Nevertheless, they are the team leader, and if they could give their PWP some guidance, it would help them get off to a better start. Maybe it could even help slow the progression. The Parkinson's community and most Movement Disorder Specialists agree that a vigorous exercise program slows the progress of Parkinson's, and it should be started as soon as possible after diagnosis. The newly diagnosed need guidance to do this. What kind of exercise, how often, what is available in their area? Is there a local support group? If I want to talk to someone with PD, what do I do?
Here in Orange County, the problem is not the lack of resources for PWP. It is getting the information about those resources to the people with Parkinson's on a timely basis. We regularly hear from people who were diagnosed months or sometimes even years ago, that they are just learning about what is available to them. People often go online first to the national organizations for information, and the national organizations typically aren't aware of all the local resources. PWP need to know what is available close to home. In Orange County, PDBUZZ.COM is an excellent place to start. It is the only all-encompassing OC Parkinson web site. It came into being because we hoped the medical community would guide their newly diagnosed and other patients to the website to get connected to the Parkinson's community close to home. It lists fitness classes, support groups, seminars, events, and support services like PT, OT, Speech Therapy, and counseling. Although PDBUZZ.COM is getting more popular, especially with those who are already involved with the Parkinson's community, we still are not reaching the newly diagnosed as we would like to.
So how can we quickly reach those just starting their journey with PD? This situation is not unique to Orange County. At the recent Parkinson's IQ+You event in Anaheim sponsored by the Fox Foundation, we heard from people all over southern California who didn't know what was available in their area. So the question remains, how do we reach those just diagnosed? We all must continue to work on a solution. If we work together as a community, we will find the answer.
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Written by Tom Sheppard and Lauren Simmons, advocates in the Orange County Parkinson's Community
Design a pamphlet or booklet that explains the core of your message and disseminate it to ALL providers in given area. (Perhaps MJFF will underwrite?) Then request their assistant’s contact info and send PDBUZZ and any updates via email monthly to them so they can inform the provider of info or the patient directly since they are the last to see them when they are in the office. Ask them to be proactive. Ask them to build community by holding a monthly Get to Know You in the office for new patients. If they show up, they are willing to learn and let others know they are a PWP, so no confidentiality problems occur. The most important thing that happened for us was being immediately proactive and attending the monthly support group (and Tom letting us know we were not alone). As a matter of fact, we already knew 3 other couples in the room the first time. Now we know a number of PWPs across the spectrum of stages and although we fight hard to get through each day, and still feel fear of the unknown, we are intensely grateful for the community. We wish our first doctor had been more forthcoming, but our fight each day is more important than harboring resentment. We have always been and are excellent health advocates for my husband (PWP) and myself (NotPWP).
Excellent suggestions Jaye!A lot of it has to start with the providers and we have found that to be difficult unfortunately…but we will continue to try!