Ken & Marie,
You wrote:
We'd like to be prepared for our next visit to the Neuro.
What questions would you ask your Neuro at your initial
follow-up visit if you had it to do all over again given
what you know now?
Hi, My name is Terry Brennan. I'm pushing 40 (real soon!), dx'd at 30
with symptoms since I was 17. Like many others on the list, I've had
difficulties with doctors (You're too young to have PD, you must have the
DTs, etc...). Since it is early in the game for both of you, it is
important to feel comfortable with your Neuro. Therefore, I recommend
finding out as much about him/her and their practice patterns as is
possible. If he's not willing or able to share this information with
you, that is your first clue. What I'd ask:
1. What is his/her background and training relating to PD? Movement
Disorder Specialist?
2. How many other patients has he/she and is he/she treating for PD?
(total experience and current experience).
3. How does he keep up with current practice and advances and what
specific scientific journals does he/she read to do so?
4. How flexible is he/she regarding tailoring the meds to the individual
patient and seeking advice from both the patient and carepartner?
If the Neuro. is not current and unwilling to be flexible, move on to one
who is. I don't recommend asking for the MD's opinion on your prognosis
because if there is one truth w/ PD its that everyone has their own set
of symptoms and individual progression. Just because someone else is
very similar in age, sex, # of years dx'd, part of the country, etc. does
not mean that they will 'travel the same PD path'.
Good luck and God Bless.
Terry
