We’re working on some exciting projects at the Michael J. Fox Foundation designed to help researchers better understand the connection between family and individual medical history, risk factors, symptoms and medication activity of people with Parkinson’s.

As part of this effort, we’re looking to understand the nature of information exchanged between patients and doctors, especially during a doctor’s appointment. We’ve put together a short survey for people with Parkinson’s to help guide our efforts.

If you would like to take this survey, please follow this link: http://www2.michaeljfox.org/site/Sur...SURVEY_ID=2463

Your answers are anonymous and will only be shared within the Foundation. Feel free to be as detailed with your answers as you see fit. Also, please share with other patients who might be interested in informing our process.

Thank you for your help and guidance.

Best, Debi

Memo to all Parkinsonians, errr, Parkies, errr, PWP, errr, pd'ers, errr spastics:

We want to participate in, be part of, contribute to, insist upon & etc. We say so because it is so.

So here we've got the MJF Foundation seeking to understand how the patients experience their relationship with the doctors.

We, the patients, are the only ones who can provide this information and insight. Let us, therefore, do so. It is not a big task, and we will all get to see the results. Respond, please, to Debi's Request For Information.
Tell it like it is.

And every once in awhile, remind yourself:

If not now, when?
If not us, who?

I just answered the MJFF survey. It is very quick and easy. Take a moment and fill it out.

I found the question about "performing well" at your doctor appointment interestsing.

I notice I always feel I'm at my best in the doctor's office. I stand up straight, swing my arms and walk down that hallway with determination. However, at home I'll hunch more frequently and drag my foot. What's up with that? I guess I tend to put my best foot forward (pun intended!) when I'm out in public.

My doctor, a woman, always tells me to walk like I'm a model on the cat walk. Shoulders back, feet out in front. Fashion Week here I come. Now if only I could walk in those high heels!

Stand Tall

We have 10 people who have completely the quick survey so far. More input is welcome.

Debi

now there's 11

Your first dozen participants!
Peg

[QUOTE=Debi Brooks;967358]We have 10 people who have completely the quick survey so far. More input is welcome.

Debi,

I just completet your survey. Hope the information helps.

Gary

Dear Debi,

This forum embodies some very intelligent people who are self-regulating.

My "primary care provider" for me is****me***. My present support team includes massage therapists, a dentist,music therapist/shaman, an upper cervical chiropractor, a naturopath,and friends....no neuro ,no MDS, or even MD.

Would you consider broadening your survey to include the massive pder population who are seeking complimentary and integrative therapies ? This would engender a very broad range of questions that I'm wondering if you would find "relevant".

your survey question #2: - "What does your doctor ask you during every visit?" my doctor (me) asks (me)..........where does the fear come from?(not that the answer to that is a solution to the problem)

Kind regards,
Sharilyn

So totally agree Sharilyn. Dx'd in 2003 and having run the gamut of pd meds which I quit in 2009, I see no gp or neuro and my support team includes people who have recovered from pd, pwps, family, friends, tai chi teacher and fellow students, yoga therapist, tcm therapist.

I'm real, I exist, I should be counted. Is there really nothing to learn from me?

What a novel situation, assessing the neuro. Thanks for the opportunity.

Ann