DIAGNOSIS POLLS Q2: In the first 3 months... - Cure Parkinson's
DIAGNOSIS POLLS Q2: In the first 3 months post diagnosis, which of the following were useful (tick all that apply)?
I was given booklets after contacting a local PD group organiser.
During the first few months I tried to ignore PD, and hided away from it. It was foolish but I needed time to accept it.
The lovely Parkinsons Nurse was most reassuring.
I also found my Parkinsons Nurse to be supportive and a wealth of knowledge. Wish there were more of them.
i was dxd with psp and found the psp website and the blogs both for hte PSP and Parksinsons v helpful
jill
My first 3 months was a very personal time in which I read a few booklets and visited a few recommended websites, very confused and not functioning or processing very well. It was close to a year before I started to come around to acceptance of my diagnosis and start to interact and really investigate the world of Parkinson's etc. Still doing it 16 years later!!
My doctor gave me no written information and very little verbal info. I searched the web for information. I have a good friend who's father had PD, she was helpful. I was glad when I found this site, in the beginning I used it daily with questions about symptoms I had and if they were "normal" for PD. It was helpful to get the feedback of fellow Parkies. The local support group just left me in fear of what my future would hold...could not go back there.
Wish we had PD nurses in the US, it is hard to even find a Neurologist in my area who knows more than I do about PD.
My wifes doctor has yet taken the time to talk to us about Parkinsons and when we ask him
we gtet a brush off. Have tried to fine support group in our area with no luck. We are basically on our own.
my neuro's office has a nurse physician. he helps renew prescriptions, etc. Poor guy he lost his house in hurricane Sandy
Getting myself informed about PD was very important in the first few months because my medical practitioners told me nothing, and had nothing to offer in the way of leaflets etc.
Oh, I was eventually referred to my lovely PD nurse specialist, but that was some months later.
P.D shows itselves with so many faces and symptoms. you will have to be your own
neurologist until you find the right medication. physical engagement and excercise
is my main medication
I enjoy your input and interesting reports
My first neurologist did nothing of any value, except to confirm that I had PD. There was a poster in his exam room that I studied. I went online to start gathering information while starting on .25mg of Mirapex 3X per day. By the time I went back three weeks later, I was better armed with information. He was I hope a good listener, because he certainly was not a good talker!
I was in denial for a year until a friend forced me to attend the local support group. I then helped to set up a local Young Person's Group in 2006 which thrives very well today and since moving to Sheffield I participate in every activity can
PUK info useful and helpline. Also online friends made on forum i found.
I was told to come back in 6 months. No web sites, no advice, no information, nothing, except , possibly the opportunity to take part in a drug trial.
Facebook has a great support page! PD Night Owls. Also PDA and MJFF
Wow, sort of looks like the doctors are way behind....
