[Conductor71]

Interesting interview with Jack Clark, neurologist out of University of Toronto, who seems to get that we need to move beyond dopamine replacement therapy. He even calls it "Parkinson's Diseases" we have different etiologies with same clinical features.

Highlight of what he has to say at The Dana Organization; there is also a fantastic visual that can be printed for reference.

...Parkinson’s disease is far more than a degeneration of the nigrostriatal dopamine system. Instead, it is a widespread process involving multiple brain systems, including those involving noradrenaline, serotonin, acetylcholine, and other neurotransmitters.

Moreover, as the disease progresses, patients develop a number of symptoms that respond poorly if at all to dopamine replacement therapy. These symptoms—now commonly believed to occur due to involvement of non-dopaminergic brain regions—account for a very large proportion of the disability seen in the later stages of the disease.

Just as man needed to move beyond the Ptolemaic belief that the earth was the center of the universe around which the sun and planets revolved, I feel that we now need to go beyond the belief that dopamine is the center of the Parkinson Universe

[indigogo]

Laura - I looked at the article and made the same mistake - then I looked closer - the interview is with Tony Lang who is the Jack Clark Chair of PD Research at U Toronto.

Dr. Lang is well known to us - a major foe in the GDNF wars; disdainful of patients (tell them about San Diego, Paula!), and a huge influence in PD research (past president of the Movement Disorder Society)

That said ........ I am so very encouraged by his words - I can barely believe they are coming from him!

[Conductor71]

Originally Posted by indigogo

Laura - I looked at the article and made the same mistake - then I looked closer - the interview is with Tony Lang who is the Jack Clark Chair of PD Research at U Toronto.

Dr. Lang is well known to us - a major foe in the GDNF wars; disdainful of patients (tell them about San Diego, Paula!), and a huge influence in PD research (past president of the Movement Disorder Society)

That said ........ I am so very encouraged by his words - I can barely believe they are coming from him!

Thanks for the correction, Carey. This is what happens when multitasking- do I dare say, "brain cramp"?

I am; however, disappointed to hear he is our Lex Luther. Paula, maybe some day, you can add your Tony Lang story here?

I guess on the bright side, we should be encouraged that an old timer is actually "getting it". No matter what his faults, he seems to have the courage of his convictions, and I can respect that.

Laura

[indigogo]

Laura - exactly! If he is thinking this progressively, it is good that he is in a position of influence. Maybe he'll warm up to the presence of patients and our ideas as well. After all, patients have known for as long as we have lived with PD that what we are experiencing is not the small universe as described in the literature - it's much more expansive - glad the research is finally catching up!

[paula_w]

oh where to begin? i met jack clark ...lol...he is [was? this was during plwp days] a patient and a millionaire in canada. he held a symposium at his mansion that we all attended on alternative therapies - reiki, etc. a different therapy in each room. his giant kitchen provided a wonderful huge dinner and we all ended up dancing, including the elderly jack and his wife to "We are Family". All arranged through lynda mckenzie's group [the gal in Freed's fetal cell study]

jack donated the money for the chair. Tony Lang is a bright guy and he is authoring some of this nondopaminergic thinking. He defended Amgen at the table that day for 3 hours in San Diego and authored much of the pro amgen arguments in the medical journals. Two things stand out for me about Tony Lang. One is that he wasn't glad about the halt of gdnf at first either. That;s the good stand out. The other is his statement to April, a participant, that day ,"do you want two hockey pucks in your stomach forever?"

well--yeah----some of the gdnf participants did...otherwise why were they inserted? were they ever really going to produce that treatment?

On the same day, the very same day, a new definition of pd appeared on the front page of the San Diego newspaper that redefined pd as having a non motor component.

Now the nondopaminergic movement.

But what is being created - a medicine or a market? in theory i am having no trouble with nondopaminergic - I'm living it. I agree with Dr. Lang in theory. Someone should write and ask him what he thinks about alzheimers drugs helping pd. Here we have a " consultant" and many 'conflicts of interest". What are they? just something listed at the end of articles....with no explanation.


paula

Originally Posted by indigogo

Laura - I looked at the article and made the same mistake - then I looked closer - the interview is with Tony Lang who is the Jack Clark Chair of PD Research at U Toronto.

Dr. Lang is well known to us - a major foe in the GDNF wars; disdainful of patients (tell them about San Diego, Paula!), and a huge influence in PD research (past president of the Movement Disorder Society)

That said ........ I am so very encouraged by his words - I can barely believe they are coming from him!

[indigogo]

Paula - that is so funny! I've always heard from you veterans about the Canadian meetings, and have had the opportunity to meet Linda MacKenzie, but I have never heard the Jack Clark story! It's been soooooooo long!

[lindylanka]

Carey, Paula,
Because of your posts I have read and re-read the article, and I think there is a huge amount in it that needs discussion, there is a very revisionist quality to it. For instance there is a statement that many people in the pre-levodopa era died before exhibiting the non-dopaminergic symptoms, that they in other words died prematurely. This is not anything that I have seen expressed elsewhere, and I grew up with my untreated grandmother, who had PD and lived into her eighties, certainly over 30 years with PD, and it was my understanding that this was normal in untreated PD. She certainly had the non-motor symptoms. It was not an unusual condition in my community, in fact there are descriptions in modern writing that bear this out. So I don't quite buy the idea that the motor symptoms masked the non-motor in days before levodopa........, or that the differences between non-motor, non-dopaminergic and dopaminergic symptoms were not evident and visible - ignored, not considered, or regarded as untreatable maybe...

The article does however define different aspects of PD well, and moves us into this unknown potentiality of a post-dopaminergic phase of PD - though I do not think we are anywhere near resolving the dopaminergic stage yet. I am not the expert, just a patient, yet I find this article both hugely hope-making from one type of reading, and rather disconcerting from another.

I am really glad that Laura brought it to our attention, not the least because it expresses some things that patients have been discussing for all of the time that I have been on the forums! As though these things are fresh and new.........

The history notwithstanding, I would like to see more opinion on the content of the interview.............

Lindy

[paula_w]

Lindy are you thinking that when dopamine stops working we get these symptoms? It's really the l-dopa addiction and just running out of dopamine?
Are you thinking it' still dopamine we need?

it's another way to look at this. we wouldn't have the nondopaminergic symptoms if we did not have the lack of dopamine and the dopamine replacement eventually stops working and causes serious problems. dopamine now doesn't help, because we have no more dopamine cells.

Yet Dr. lang in this interview and with others in other articles specifically states that cell replacement is not the answer. i'm soo in over my head here.

lindy is this what you meant?
paula

Originally Posted by lindylanka

Carey, Paula,
Because of your posts I have read and re-read the article, and I think there is a huge amount in it that needs discussion, there is a very revisionist quality to it. For instance there is a statement that many people in the pre-levodopa era died before exhibiting the non-dopaminergic symptoms, that they in other words died prematurely. This is not anything that I have seen expressed elsewhere, and I grew up with my untreated grandmother, who had PD and lived into her eighties, certainly over 30 years with PD, and it was my understanding that this was normal in untreated PD. She certainly had the non-motor symptoms. It was not an unusual condition in my community, in fact there are descriptions in modern writing that bear this out. So I don't quite buy the idea that the motor symptoms masked the non-motor in days before levodopa........, or that the differences between non-motor, non-dopaminergic and dopaminergic symptoms were not evident and visible - ignored, not considered, or regarded as untreatable maybe...

The article does however define different aspects of PD well, and moves us into this unknown potentiality of a post-dopaminergic phase of PD - though I do not think we are anywhere near resolving the dopaminergic stage yet. I am not the expert, just a patient, yet I find this article both hugely hope-making from one type of reading, and rather disconcerting from another.

I am really glad that Laura brought it to our attention, not the least because it expresses some things that patients have been discussing for all of the time that I have been on the forums! As though these things are fresh and new.........

The history notwithstanding, I would like to see more opinion on the content of the interview.............

Lindy

[lindylanka]

Paula,
I just think that all these symptoms have been there to be seen traditionally in PD, with the exception of those that are clearly side-effects and not symptoms.

So to talk about them as though they were not always there and visible is to re-write history. For instance it is not for nothing that once PD was treated in elderly patients who had it for a long time as a psychiatric disorder. In other words, there were always non motor symptoms, before levodopa, but neuros did not know what to do with them so they were passed on to the other variety of 'head' doctors, the psychiatrists, just as now if we manifest with bladder symptoms we are passed on to a urologist.

So to state that these symptoms only came into evidence in the 'dopamine era' is bending the truth.

So now patients are demanding, as they are more able and better informed, that these same symptoms be taken into consideration, and perhaps these same doctors who have always erred on the side ignoring these same symptoms can see that perhaps they can be treated....... but they have not yet really got a handle on dopamine treatments yet, We are better at this than they are. Look at the patients who have managed many years on dopamine, keeping their doses very low and ensuring that their brains have an even dose, or as much as possible, and have fewer side effects. But also consider those whose neuros do not really understand dopamine, and who willy-nilly encourage patients to up their dosage, or add other drugs, create huge cocktails of medication, and no-one professional really understands these complex interactions. In fact in the very elderly, because their brains by that time are very fragile, often drugs are reduced to the very minimum or in other words, dopamine only. Because the rest is too much for their bodies to cope with.

Obviously the best informed doctors are better, but we have seen many people come on the forums under-medicated, overmedicated, under-informed about their medication, and not knowing whether they were suffering from PD or side-effects, or whether they were progressing rapidly, and in a state of acute anxiety.

So I say that dopamine as a treatment has not really been properly understood. So how can we be at a stage called 'post-dopamine' era ? And if that is where we are heading, along with the industry that has accumulated around our condition, where are we going?? That is what I am asking about.

I do not know the answers, but I do think that when we are on a minimum of medication, and our non motor issues have been addressed, then we are likely to have the best quality of life.

It is making that happen, and making it work for us that is the real question. And I do believe that some of these things can happen without drug interventions, too. The multi-faceted approaches we have discussed here are surely part of the answer......

[reverett123]

There has always been a minority of researchers who express doubts about ldopa. In particular, I wonder about the metabolites and waste products that go with it.