DIAGNOSIS POLLS Q2: In the first 3 months... - Cure Parkinson's

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DIAGNOSIS POLLS Q2: In the first 3 months post diagnosis, which of the following were useful (tick all that apply)?

JonStamford profile imageJonStamford90 Voters
80
Websites I found myself
46
Books/booklets I found myself
20
Personal advice from fellow patients
19
Books/booklets given or recommended by my doctor/HCP
18
Joining a local support group
16
Professional advice from my doctor/HCP
13
Other (please add comment)
6
Websites recommended by my doctor/HCP
18 Replies

I was given booklets after contacting a local PD group organiser.

Jaykay profile image
Jaykay

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.

kirleyvall profile image
kirleyvall

The lovely Parkinsons Nurse was most reassuring.

Court profile image
Court

I also found my Parkinsons Nurse to be supportive and a wealth of knowledge. Wish there were more of them.

jillannf6 profile image
jillannf6

i was dxd with psp and found the psp website and the blogs both for hte PSP and Parksinsons v helpful

jill

Ryan profile image
Ryan

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!!

Susie01 profile image
Susie01

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.

fisherman profile image
fisherman

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.

PatV profile image
PatV

my neuro's office has a nurse physician. he helps renew prescriptions, etc. Poor guy he lost his house in hurricane Sandy

Lindylanka profile image
Lindylanka

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.

Lindylanka profile image
Lindylanka

Oh, I was eventually referred to my lovely PD nurse specialist, but that was some months later.

FREDZI profile image
FREDZI

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

marthasway profile image
marthasway

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!

froggatt55 profile image
froggatt55

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

Hikoi profile image
Hikoi

PUK info useful and helpline. Also online friends made on forum i found.

annh profile image
annh

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.

mookiejo profile image
mookiejo

Facebook has a great support page! PD Night Owls. Also PDA and MJFF

Allyn profile image
Allyn

Wow, sort of looks like the doctors are way behind....