yes, very twilight zone... you go see the doc; this granny shows up and leads you to this hidden community of PWP rebels up in the hills, and they are preparing to counter-attack the Amgen tribe of murderers, and you have been recruited to join something you did not know existed - the rest of the world does not know about it.... you are entering the ZONE

that's amazing
 

bob,

how old would you estimate her to be? now i'm intrigued and could even know her. that's how the internet works and nothing surprises me anymore. what was in the pictures, do you recall?

paula

Is the dithering worthwhile?
 

Debi, you said:

This is why I am not a scientist. Can you explain their reluctance? It worries me that those who are more conservative in their approach are standing in the way of those who might want more innovation. There hasn't been a PD treatment breakthrough in decades. We're waiting and wasting while they dither. At least that is how it feels.

Carey,
That statement "The "three groups" are loosely defined and there are experts in the field that still disagree with the observations and specific descriptions of such subtypes." is troubling for me too.

I am interpreting it as experts in the field are looking for subtype classification at the molecular level not just by the physical characteristics of a PWP> They believe that some features are innate to PD, and some are drug induced and hence, the classfication needs to be done at the molecular level.

It is clear to me that there are several sub groups among PWPS whether the experts agree or not. This in fact, reminds me of how cancer research was before we knew benign, malignant and metastatic cancers. Each stage comes with its own dysregulation of genes and cascades of complex regulation. THey are all cancers, but the severity and manifestations are different.

Laura's post about differences in the brain in autopsy of PD patients is telling something about the diff. Tremor dominant vs rigidity dominant forms of PD and a mix of both are the basic classification. at present we can only go by physical symptoms and may be some scans to identify subsets. A good place to start and go onto much more specific parameters. Very basic questions come to my mind as I dont have a good grip on the literature on PD out there yet (I am trying!),
hence these questions; if answers are known I apologize and please do let me know!

What is basic diff in the genetic profile of rigidity dominant Vs tremor dominant patients?
Are any of the known mutations associated wiht one form or the other?
Among those who exhibit both subtype features, what is the progression rate?
Are there any biomarkers or even physical markers that can predict whihc way PD would go?
(Frozen shoulder seems be so common among PWPS, is this a tentative marker along wiht others)
Way too many questions to ponder as usual..

In my opinion, just going back to the data generated from the clinical trials that "failed" and reclassifying patients into these three groups will be the simplest thing to do to get an idea of whats going on.. Is anyone re-evaluating data based on subtypes?
Girija

70+
 

I checked out the granny later, and she was over 70 years old at that time, which was only a few months ago, or maybe a year, when JimmyBear was complaining about the warnings on Seligilene and I was praising Mirapex. The granny gave me photocopies - like about Andy Grove and the 1,000 turning to ten billion because Andy knows how to run a shop; and interviews with Andy - but I don't remember which were from newspapers and which from websites - probably a lot of it came from this site. And then, and then, the article by the professor about Andy being wrong. Andy - the one who is wrong. Says this researcher.
Well.
And more quotes about Andy, all negative, all from the Parkinson's Research Industry.
Well.
By this time I am steaming and the whole waiting room is watching. I figure that's the story, but no - that was just the introduction.
THEN she tells me about Amgen. And then she tells me about the 48 volunteers. And then she tells me about the before and the after. And then she tells me how they fought for their lives. And then she tells me how they were treated. And then she tells me that I had better watch my step in the PD Industry, and this message is being handed down to the newbies by those who are closer to death, but it used to be whispered if mentioned at all - a kind of urban legend whispered in the hospital waiting room: "Is it true what they say?" "What? What do they say?" "About drilling holes in people, into their heads, and then just letting their suffer." "Jimmy, Jimmy, now who tells your those stories? Don't be afraid, it's just your regular check-up." "They won't do that to me, will they?" Whispering. Taboo subject.
Well, Granny was not whispering. She was talking real loud.
And she was telling it like it is; she saw exactly what happened and it was told in her voice, she showed us what she saw with her eyes, what she heard, she used words that showed what she felt - it was all just the truth, and she knew exactly what she was talking about - and in those few years when these events transpired, she had lived about 5 lifetimes of some of the most intense things a person can live through; Some professor could go on lecturing for hours; she could say a lot more in one sentence. Because she was the one who was there. The professor was not there. Neither was I. The people who were there need to know that's it's okay to come out of hiding; write the story as you saw it; sing songs and dance away from it. Y'all sure got one heck of a story goin' on there. I mean, in my days, I've have seen some things that happened.
But you folks! Good Lord! What you have lived through! It involves everything. Everything and then some more.

Is it just me?
 

Is there not a clear difference between Young Onset and Senior? I'm not saying that I can define it but it seems to be there.

Just reading forums leads me to think that YOPD are far more vulnerable to acute stress than SOPD. And YOPD seem to have more of a "driven" personality. They also seem to report more life trauma. It might take some work to decide where to draw the line, but it sure looks like two different disorders. Heck, they even tell you that YOPD progresses more slowly.

Who's on First?
 

Carey and Girija,

Your questions leave me wondering not only when things will happen, but how? We already know the painstakingly slow research process for new treatments, but what is the time line for how research informs clinical practice? In other words, how much more research or validation at the molecular level is needed before the AAN begins to redefine guidelines for diagnosis and treatment of Parkinson's? There seems to me a huge disconnect between research and practice.

As Girija stresses, we already seem to have some hard evidence that there are molecular differences between subtypes with different pathologies and chemicals at play. Is there anyone out there trying to connect these dots? In looking over the MJFF funded research results on subtypes (found at PDOnline), I was at first surprised that researchers could not agree on the results. Then, I wondered it's not so surprising if no scientific model or standard exists for each to apply when trying to validate subtypes? If each researcher is using their own set of measurements, how can they ever reach some sort of consensus? Maybe I'm way off base here in my understanding of research at this level and scientists would not want or need to first define common measurements in establishing subtypes at the molecular level. We have morphologies, PET scans, just what more is needed to bring the clinical observation together with the hard proof? Biomarkers and genetics, as Girija has mentioned, may be another way to help bridge the divide.

So, what is with the dithering? Charcot described two variants of Parkinsonism in the 19th century. The research of K.A. Jellinger linking clinical observation of subtypes to distinct biochemical areas of the brain dates back to 1991. Everyone involved; scientists, clinicians, patients, we all realize that time is of the essence, so what does it take for theory to more quickly evolve into practice? This isn't Vaudeville, though after a talk with a neurologist, it sometimes seems that way; why should we have to ask "Who's on First?" The problem seems to be that we don't have a team in the first place...scientists generate a lot of information, neurologists plod along with substandard diagnostic "tools" and treatment approaches, and we endure. Ultimately, this research seems futile when there is little connection to clinical practice and no real progress in treatment.

Laura

Girija mentioned that it might be helpful to have a visual model of the chemical pathologies in brain regions identified by Jellinger as unique to subtypes...ran across one at Google Books: Diagnosis and Treatment of PD-State of the Art

Yep, my neuro ...
 

is convinced there is a difference between yopd and sopd. I believe this is accepted by the broader pd world. yopd have slower progression, more dyskinesia, and no increased risk of dementia/cognitive troubles. sopd have more chance of dementia, less dyskinesia.

There are other differences but these are the ones he mentioned.

As I said earlier, never asked him his opinion re. sub types.

Neil.

article relevant to this by jankovic here:

http://jnnp.bmj.com/cgi/reprint/79/4/368

lindy

Dear All,
Thanks for all the info and articles.
As you know PDonline research has asked for suggestions on subtype classification so that funding can be channeled in the right direction. THank you MJFF!

Laura, I have a suggestion. If its OK with everyone, may be we can summarize our questions and suggestions (from an informed patient's perspective) and post them PDonline along with your info. It would be good to hear experts opinion. I dont mind doing that, but unclear of the legalities of this process as I work for a company..... Deb, if you are reading this, could you please advise us.

girija

Th