We need designer treatments.
 

Paula,

I certainly don't place much on the whole disease prognosis that supposedly goes along with the subtype territory. I'm already a sub, sub, sub set by having a pregnancy. Have those hormones adversely and permanently affected my symptoms? You bet. I hear the same from other women who have become moms after diagnosis; interestingly too, that most of us (me included) note an increase in stiffness and rigidity. Just when I think I have that settled, I hear from a 31 year old that pregnancy eased her symptoms and she remained that way post partum. Do researchers have something to learn here? Of course they do, at this point; however, I am weary of adding yet another piece to the puzzle.

Always there are exceptions. If anything, I learn that the more we know, paradoxically, the more we don't know.

In the deep, gaping void that is a cure, we need to rally around what can be done. Really the identification of subtypes is not new stuff; Jankovic's research on clinical observations was published in 1985. I think looking at it in terms of classifying/diagnosing and targeting treatments is a rather novel approach. Hence, the interest by MJFF in the last few years. While I still hope for a cure, I agree with Carey's (Indigogo) recent post that the best we can do right now is focus on better treatments- maybe a cure will spring from this. I think it is much more realistic to establish subtypes on a biochemical level and then streamline treatments. How can we throw Filene's bargain basement treatments at a designer disease and expect everyone to benefit?

Laura

Amgen...
 

Wanted to address Amgen...

I'm not sure what can ever be done about Amgen? They serve as a poster child for everything that is wrong about the research milieu. We often express anger and sadness here or in our blogs over what went wrong, but frankly I wonder if that's entirely wasted energy. Why aren't we, instead, carrying posters outside their headquarters in protest? If a tree falls in the forest and no one is around to hear does it make a sound?

Has a Parkie group ever organized and protested anywhere? While I don't think this is necessarily the best or only way to affect change; the publicity would surely be welcome. I'm thinking that orchestrating a protest around on/off times might elevate the whole thing to performance art. A dopamine dependent Cirque de Soleil, so to speak. It sure would be nice to see something in the news beyond the usual scientific trivial pursuit.

Laura

laura,
i love your images: " might elevate the whole thing to performance art. A dopamine dependent Cirque de Soleil, so to speak. It sure would be nice to see something in the news beyond the usual scientific trivial pursuit." It's all so visually wonderful! And we could have a whispering chorus singing protest songs like Holly Near's "We are gentle, angry people and we are singing for our lives", a current favorite of mine.

katherine

GDNF from amgen is over
 

Laura,

We didn't protest in the tradtional sense but did, through the help of PDF, actually sit down at the table with the research investigators. MJFF also hosted us for a discussion about it. There was much more and i would recommend that you read Monkeys... There i sn't anything that can be done at this point.

It keeps coming up because newly diagnosed haven't heard the story, pwps offline know nothing about it, many neuros don't know about it and because it opened our eyes to the realization that our generation had lost the treatment that we had been waiting for.

When you do the math, 14 or more yrs for a treatment - there you have it....they can't stop it in time for some of us. SPIT is a message to sergey really and others with markers,who have the capability [money] to try to stop it for future pwp,as well as pwp who can help by participating in the genetic analysis. it will always be about time.

When a child goes missing, the probability clock starts ticking. If they don't find the child within a certain time period the probability of success drops and continues to drop as time goes by. URGENCY is everything.

That sense of urgency is not present in much of the pd community and you can't really grasp it unless you are a patient.

That's why we "go off" , sound like complainers, criticize, etc.. things which some would call "negative". The whole process is bogged down in red tape, hiring more employees to do the red tape.....well you get the idea.

If we were missing children we'd be lost forever...............quite likely dead.

But there's a part of me that knows we are too complicated for anyone to ever figure it out. i would like to see symptom relief tho, as quality of life becomes quite poor.

paula

"Issue these challenges"
 

Paula W. wrote….with gdnf being pump infused, it was a continuous monthly treatment, not gene therapy. they didn't give it enough time. what a screw up sorry but i still get upset over it…
it's not too late to try to establish whether the gdnf participants who did not have dislodged catheters and found it successful were of a particular subtype. what other treatment has done as well? why not do this before doing another trial?... follow up is imperative....Amgen just totally abandoned them.
It just seems logical to study the people in the Amgen trials first. we found many of them all by ourselves…
…and they wonder why we think they have no urgency, just a career. prove me wrong, please. i have to issue these challenges - we deserve thoroughness. if we are just going to be abandoned to die, then why should we go thru the torture of a clinical trial with sham surgery first?
we want to trust, why wouldn't we want to trust?...” - Paula W.

Bob Dawson says: Paula W., you are entirely right again. Unbelievable that they apparently have not followed up on the 48 volunteers; incredible abuse and shattering of trust; it’s outrageous that Amgen abondoned them – and thus abandoned all of us. It should have just been handed over for criminal prosecution. What you and those around you went through, Paula, makes me furious every time I think about it. I was diagnosed in 2004 but did not even hear about the Amgen misconduct until very recently. All I can think of doing is spreading the story, telling more people about it. Your calls for action are much more to the point… the silence from Amgen is deafening. And they did not have then, and do not have now, the moral or ethical right to do what they did… and what they continue to do… Amgen violated the laws of man and God and nature and common sense.
But it’s not over. It’s not over. Amgen thinks it’s over. They are wrong. Again.

I was recruited by a PWP
 

I was recruited by a 70 year old woman. My website was about dancing; in Chapters 8 and 8.5 I praised the pharma companies. She discussed it with other PWP and they decided to send her to conk me on the head with the Amgen story. She had photocopies and web addresses for me and told the story in front fo 30 PWP in the waiting room. There is a powerful train coming smoking down the tracks. And the granny who recruited me made me pass the Litmus Test. What's your opinion about the Amgen controversy? Correct answer: There is no controversy. It was WRONG. And anybody who does not think it was WRONG should not be treating PWP.

conspiracy!
 

And she never did tell me how she knew i would be in the waiting room that day!

Hey Bob ...
 

I share your righteous anger re. Amgen and GDNF and don't get me started about Spheramine.

However ...

what waiting room were you in and what exactly have you been recruited into ?

Neil.
p.s. nice blog buddy.

<In my best Rod Serling "Twilight Zone" voice-

"For your consideration. Bob Dawson, simple dancing PWP, enters a waiting room. A waiting room at the edge of ...the Twilight Zone."

They don't make themlike that anymore. I still get the heebie-jeebies over the one where the kid fell through the rip in space-time :D

Oh, it was the waiting room of the neurology department in Montreal - waiting for my regular appointment with neuro.
I already had the blog and praised and joked about pharma in chapters 8 and 8.5 The rest is dancing and joy and good stuff. She recruited me to this awareness and anger about Amgen. That was her only mission. SHe brought photocopies, web addresses and told the story of the amgen experiences.
In posts above, people ask what we could do. That;s one example - recruit targeted people; and also supply info in waiting rooms and elsewhere -- and moreso - impose the Litmus Test. What DOES your doctor believe about the Amgen story? Not just doctor, but anybody. Give them the litmus test and if they flunk tell them they are in the wrong line of work or to stay away from PWP