Step back in time with me for a moment…here is the scene: you are a kid on the playground in the middle of a school day. Everyone is lined up against the fence waiting to be picked for a team. If you are selected as Team Captain you have the most power. You can pick anyone you want and naturally, you start by picking the best. Why settle?
The concept of building a team from the ground up beginning with the strongest players is not uncommon. This rings true across various settings:
School projects: smartest pupil in class
Fantasy football: best performing Quarterback
Close friends: those who share similar goals and interests
New project manager: the employee with experience and professionalism
The list goes on.
What does this have to do with Parkinson’s, you ask?
It is quite simple. If you have a diagnosis of Parkinson’s disease, you are the Team Captain. You get to pick your team members and you only want the best. Why settle?
As a speech-language pathologist I have often listened as patients with PD express that they are unhappy with the medical care they are receiving. The ensuing conversation usually reveals that it is not direct discontentment with the services provided by the medical team or even inattention to their disease process but rather a lack of specialization.
When you get a diagnosis of PD your first stop should be locating a comprehensive team of medical professionals. In order to receive individualized care for a complex and dynamic disease you should begin by picking “the best” for your team. Start with a specialist in your area of need: neurological motor disorders.
Suketu Khandhar, M.D. spoke on this topic with Parkinson’s Disease Foundation’s ExpertBriefing Seminar. This paraphrased outline of Dr. Khandhar’s presentation can shed light on the first steps to take during the initial months after diagnosis. Start your team with these professionals:
- Primary care physician- this person should be managing all of your non-Parkinson’s related concerns.
- Neurologist- should be a movement disorder neurologist who specializes in this area so he/she can mange your PD medications effectively and with the most updated research informing all decisions about your care.
- Physical therapist- develops a structured and individualized exercise program for you (that will need ongoing modifications as the disease changes).
- Support network-the place you establish community, resources and support.
As time progresses, there will be a need for the team to expand to additional medical professionals to ensure all areas of concern are being addressed. Your team might also include the following healthcare team members:
- Speech therapy, occupational therapy, mental health professionals
- Urology, Gastroenterology, neurosurgery
- Community based programs
The upcoming posts will take a more detailed look at these professionals, what they have to say about Parkinson’s disease and how their field can directly address your needs.
A comprehensive team is key to your care and educating yourself is the start to making informed decisions. You can view the original powerpoint slides from this seminar here.
If you have other professionals on your team that have been helpful, please comment below. All feedback is welcome!