Peggy,

That is just too cool that you do this! It's needed and if it educates even one person, you will have achieved something good.

For me, PD is an unknown and the unknown is often scarier than the known. Even more difficult is that each person has different symptoms, we each progress differently, we each take different medications, etc. As an example, my daughter (18) attended one of my neuro appts. and walked away upset. She said, "Mom, he didn't really examine you, didn't really discuss anything, so what's the point."

I tried to explain to her that because each case is so very different, it is up to US to initiate a discussion, and for US to tell him what bothers us. How many other diseases are like that?

At the same time, I try to see the "blessings" behind having PD. It truly does help me keep my priorities in order. I am also very, very thankful that it's a long-term degenerative disease instead of something like cancer.

I have tremendous faith that I was given this disease for a reason ... look at how many people's lives I'll be able to impact between now and then.

But the one thing, above all else, that needs to be mentioned is that SO VERY MANY OF US WERE MISDIAGNOSED simply out of ignorance. My first neurologist refused ... flat out refused ... to give me a diagnosis. Was it done to spite me? Absolutely not. He honestly and truthfully believed that I didn't have it ... in his eyes ... I couldn't have it because I was simply too young.

My engineering husband believed him, my soon to be engineering daughter the same, my marriage counselor was beginning to second guess me, my pastor, and even my own family. I was living an absolute nightmare with no one to turn to. I was also accused of "neuro shopping" to get the diagnosis I wanted. (Yeah. Right). To this day, I continue to see that neurologist (I see both), to enlighten him, and to prevent another patient from having to go through what I did.

Ironically, when I DID get a diagnosis, the first neuro was totally floored. Like I said, he truly believed what he said. The very next sentence out of his mouth was ... "Well, Baylor has better lawyers than I do." at which I told him that I simply wouldn't sue anyone unless it was blatantly done with no regard to the outcome. We all make mistakes and his was out of ignorance.

If you can somehow use those comments, go for it! I'm sorry that it's not concise.

Best of luck to you, Peggy, and please continue to enlighten people!

Terri
aka proudest_mama (age 43 symptoms began, age 44 when finally dx)