Jumping In, Saying Howdy!
 

Greetings, all!

I guess this is a return of sorts for me. When I was diagnosed back in 2000, I dwelt in the NeuroTalk community's PD forum as "Radiobill." But I sorta fell away from it. Don't know why.

Now I'm back! :)

It's been an interesting time, especially the last year. From about 2003 until recently, I felt like I was doing well enough -- symptom-wise -- to lay off the meds and thereby avoid the dyskinesia. Then I went to work for the government and chose an insurance company that insisted I see a regular neuro doc instead of a movement disorder specialist. For the past year we've been doing battle as to whether or not I had PD, or carpal tunnel syndrome, or cervical stenosis, or peripheral neuropathy.

"One thing I can say with almost absolute certainty," this doctor said. "You do not have PD."

So... after a year of declining neurological fortunes... I switched insurance companies and am now being seen by a fine movement disorder specialist who said, "With all due respect to your former doctor, you DO have PD -- and a pretty classical case of it."

I'm on Stalevo 100 and maintaining nicely.

I look forward to participating in discussions and getting to know each of you.

Have a great weekend, and thanks. :D

Welcome back
 

Jump on in Bill. The water is fine. It looks as though quite a few from the past are dropping in lately. I have been pretty inconsistent, and like you, I don't really know why. The discussions don't seem to be quite what they used to be, but perhaps we can start one up. What would you like to talk about?

michael b.

Well, one might be to discuss a tendency amongst ourselves to pretend we don't HAVE PD. I know I was convinced that my problems were probably something "else" -- something more curable. And danged if my previous neuro doc didn't try to comply. But then explain the fact that an hour after taking my first Stalevo 100 in a year, I felt pretty much "OK" for the first time in a year.

Now I just wanna make up for lost time, read up, get involved in clinical trials, that kinda thing.

I use the "Stubbed Toe" excuse...
 

When I get tired of having Pd, I change its name to "Stubbed Toe." Therefore, if anyone here hears me referring to my "Stubbed Toe," I am merely tired of having Parkinson's disease, and that is my form of denial. Again, like you, I don't know why.

If you are looking to get into clinical trials you might want to look at the Pipeline website.

http://www.pdpipeline.org/index.htm

michael b.

Thanks for the website. I'm currently waiting on a return phone call on a clinical trial regarding DBS in early PD.

There's another great site for all sorts of clinical trials -- http://clinicaltrials.gov -- in case anyone's interested.

Welcome back Bill!

Thanks, Steve.

How have you been doing?

hello radioguy!
 

while i do recognize the name, i don't think that we ever met. i'm joan, 55 yrs old & dxed for 17 yrs. i'm responding to your subject for discussion: pretending that we don't have pd. while i am sure that all of us never dreamed we would be faced w/ a diagnosis of pd; i was so relieved that it wasn't something which i considered worse that, in hindsight, my ignorance was laughable. i was so dumb that it never occured to me that it could get bad and besides, my life is such an open book that i would never get awat w. pretending anyway. my thoughts these days is when was the last time that i forgot that i have pd? it has been so long since i felt completely normal that i can't remember that sensation. now, my disease is my constant companion, reminding me every waking moment that it is here, that it is alive and that it is growing. but you know, it is that very reminding that causes me to keep up the fight, that keeps me alice and keeps me looking forward to the future!

Hey there, Joan!

In my case, "pretending" meant a search for some other reason for the slowness, the stiffness, the freezing and all that. It "helped" to have a crappy HMO neuro who was bound and determined that it COULDN'T be PD (he even told me I was "too young" -- a doctor, saying that! Can you believe it, this day and age?)

As I sit here, about an hour into my second Stalevo 100 of the day, I'm feeling pretty good. I was diagnosed seven years ago, so I realize my progression has been pretty slow. So I guess all any of us can do is be grateful for what's good in our lives and to work on that which is less than good.

Welcome Back
 

Hi Radioguy,
I'm GregD 49 and have been dx'ed since 2000. I just remember seeing some of your post on the old forum just as I started.
As for the regular neuro knowing what PD is I doubt it. I told one all knowing neuro it didn't take a rocket scientist to be a neurologist. My 4 year old could have done as much as he did for me. He didn't like that much.
I don't seem to be able to pretend I don't have the PD. However, I'm into woodturning and some times I can lose myself in what I am doing and not notice it at all. Usually I go too long between meds and end up paying for it later.

GregD