I think it is so sad that the neurologist who gave you that diagnosis did not explain fully to you all the jargon, that is there job do they not understand that you were probably be in shock. Go back and demand an explanation
Diagnosis of PD: I think it is so sad... - Parkinson's Movement
Never, would have been VERY helpful.
My neuro gave my Michael J. Fox's web site and told me get my information there.
I really like my neurologist. He's very compassionate and knowledgeable. But he doesn't like SPECIFICS! When I was first dx he cautioned me against doing a lot of literature and/or internet research. (I had told him I was researching different sites and felt scared.) He said the systems of pd are varied, as are may neuro diseases. He said there are hallmark traits, but even so not every pwp has them. He reminded me that it is not possible to predict with certainty how the course of my pd will run. I did appreciate his advice and have kept it in my mind as a check point.
Still it is so difficult to live with the unknown possibilities. How fast or slow will I decline? Each time I go through a particular rough patch, I worry--is this the beginning? Will I bounce back? Will I bounce back to where I was a few days or weeks ago at least?
This site has helped so much. It is the first time I have talked openly about MY pd. No sugar coating, no hiding behind a smile, some makeup, and an extra sinement carried in my purse "just in case." We're are pwp sharing, listening, advising, and caring.
I have had PD for over 15 years. You can't expect your neurologist to tell you everything you need to know about PD in a 20 minute office visit twice a year. I have a few fairly serious medical issues and I'll tell you what I do to keep up with them. I gt on the Internet several days a week and research each of my conditions. It's easy if you set up news alerts for each diagnosis. I also belong to a few support and awareness groups. This too can be accomplished through the convenience of your computer. Here is a great group I belong to that is on FB. Join us. facebook.com/groups/parkins...
I experienced 4 years of "exploration" before a cardiologist sent me across the hall to the neurologist for an immediate appointment. Most dx's had been "in my head, too many medical TV medical programs and even experiencing a
nonexistent disease (at that time) called fibromyalgia". Dr.Gorman affiliated with Overlake Hospital in Bellevue, WA, saw the leg dragging immediately and began weeks of testing. Every question was answered thoroughly. So, please, don't give up. There are competent neurologists out there and shocked at how long it has taken to be located. Unfortunately, there is nothing they can do to cure the disease, but they can sure make the journey a more comfortable one.