THE FOX FOCUS...
Ask the MD: Advocating
for Your Best Care
The journey with Parkinson’s is unique and can be difficult to navigate, especially given the complexities of the medical and insurance systems. No
one knows Parkinson’s disease (PD) better than those who are living with
it; you know more about your PD than anyone else. Coupling this knowledge with your doctor’s expertise can help you optimize your treatment.
Here are four tips on how to advocate for your best care:
1
LEARN
2
OBSERVE
1. Learn about Parkinson’s disease.
Knowledge really is power. Being educated about PD will allow you
to evaluate your symptoms, find the right physician(s) and ask good
questions. Read about the different symptoms associated with PD
as well as the available treatment options and ongoing research.
Ask your doctor and other people with Parkinson’s for credible
sources of information.
2. Be in tune with your Parkinson’s disease.
Only you can know what symptoms you’re experiencing and if and
how they’re changing. Pay attention to whether symptoms are
worsening or new ones are arising. Observe how your medications
make you feel — do they improve your symptoms, cause side
effects or both?
3. Speak up for yourself.
3
SPEAK UP
Discussions with your doctor should be honest and direct —
if (s)he doesn’t know what’s truly bothering you, it can’t be addressed. MJFF’s Fox Insight Physician’s Report (available at
foxinsight.org) is a tool that can help guide conversations in the
doctor’s office. Keep open lines of communication with loved ones
and caregivers, too. Share how you are feeling physically and
emotionally. Tell them what you need, and ask them to do the same.
4. Build your care team.
4
BUILD
10 THE FOX FOCUS
It’ll look different for every person with Parkinson’s, but each team
should ideally include a movement disorder specialist (a neurologist
with specialized training in PD). This physician can help round out
the team with other experts who treat specific symptoms. Having a
Parkinson’s specialist manage the nuances of your care and medication — basically having a medical professional who will advocate for
you — is one of the best ways you can advocate for yourself.