I feel like I am in a gold fish bowl able to see what is going on in the bigger world but no longer able to take part, with every day "as good as it gets".

Chris
Suffolk, UK

PD is like a weather report,
Your PD weather for today is:
cloudy with a chance of sunshine -
then the weather suddenly changes - and the weather man says:
well folks - like I said,
thunderstorms today with a chance of hail ?

but next week looks great!!!

For me my experience has been bittersweet..I have the ambition to build a house..but havent the motovation to go to the lumberyard..In many ways pd has been the teacher..and I have been the student

(This is my 2nd attempt to post something. If it's a duplicate, I apologize). My name appears that I responded to Steffi's post "On reading Rosebuds latest post on her panic thread...)but I can't FIND the post??! It's the weirdest darn thing. Can anyone else find it? I'll figure this out one way or another ...

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)

Peggy - and everyone else who's contributed to this thread - I hope you all don't mind but I have a big speech myself coming up this week and I'd love to use some of your words and descriptions too!

You've all expressed your thoughts and feelings so well that it would be a shame if I didn't share them with others. A lot of you have years of experience with this disease that others truly need to hear and be exposed to. I hope that's okay.

With much respect and admiration to all...

It's like trying to stop a freight train. The freight train keeps on coming and it always wins.


It's like fighting a battle that you can't win, yet you keep on trying.

It's like having your body taken over and you can't do anything about it.

Mary

Just reading this thread again...great thread. Steve, you described it perfectly in that statement, but others see this as laziness. You set out to do ten things and can't remember why you came into a room.

This lack of energy and drive is not visible to anyone and people often just truly don't get it - it's impossible to explain without any proof and lacks credibility to just say - I did want to do that today, but my feet firmly disagreed.

I will remember your quote Steve, and will probably use it. [ Attributing it to you ]

paula

After reading Terri's post I had to add mine. Husband Kevin was diagnosed in 2000 but only after 3 years of trying to find out what was wrong. He asked his Internist specifically if he thought it was PD and was told "no, it's only Essential Tremor - you're too young. This MDS was convinced that I was watching too much TV - this being shortly after MJF went public. Finally after I called the office screaming and refusing to get off the phone without a referral to a nuerologist we were finally given the refferal. The neurologist diagnosed it immediately.

Because Kevin was so phyically active, his sytoms were masked for a long time. By the time he was diagnosed, his arms were not swinging, his face masked and we had experienced falls & choking. I am amzed at how hard it is to get a diagnosis.
Gayle

Reading everyone's heartfelt sentiments brought to mind what I find is the most difficult aspect of PD... struggling to live in the moment and not to project. I work hard to enjoy and celebrate everything I can do today, and to avoid thinking about the things that may become impossible down the road. PD is a road you want to cruise not race down.
Sheryl

is like being strapped to a Roller Coaster that careens through generally predictable - tho sometimes surprising - territorries which are mostly undesireable locations. Even when it stops, you stay strapped.......until the next go round.....and the next, and the next.....

I prefer the Merry-Go Round! Always did!
Ibby