[boann]

Hi all,

Long time no post. I have another question for you all - just trying to figure out if I am nuts.

Do you think that current meds treat the cardinal, i.e., motor, symptoms of the disease well enough that further research into motor symptomatic therapies is a lower priority than other research goals (i.e., the so-called non-motor symptoms, and neuroprotection (which is a *very* long term goal))?

OK and one more question:

Which of the following makes more sense from a patient perspective:

1) spending research money on finding treatments for the side effects of levodopa
2) spending research money on finding therapies that don't cause side effects like levodopa

Thank you - I probably haven't phrased these questions such that my own opinion isn't obvious, but I really need to know - just for my own sanity - what other people with PD's thoughts are.

thanks,
boann

[Ronhutton]

Hi Boann,
When I was in research, we always said it was the questions you asked yourself that made progress.
With PD however, we are all suffering different problems, and you might find the priorities vary. For my own case, My order of prioities would be
1. Motor symptoms 2.neuroprotection 3 non motor symptoms. However there is bound to be some who would give a different order. So much depends on whether the neurons are totally dead or just deactivated. Would research on neuroprotection be likely to produce results which would stop the rot, ie stop progression only, or turn the clock back and regenerate the neurons, or both.
As regards side effects, I can only think it must be better never to develop side effects in the first place, and aim for a non side effect treatment, ie your number 2.
While we are asking ourselves questions, there is talk of forcing the brain to rewire itself, and take alternative pathways, by for example walking with the apparatus which puts pictures of tiles in front of your eyes. See the thread Technology Helps Parkinson's Patients Walk Safely Again
I have for the past 10 days tried walking on the kitchen tiles and deciding which tile I am going to step on in advance. If this forces the brain to find alternate pathways, should I do this unmedicated or medicated. I can find arguments for both.
Ron

[boann]

my previous little informal information gathering sessions have shown me that, indeed, i am *not* the center of the universe ;-) and others *do* have different priorities, and actually, as i write this, i am having a vague recollection that i have asked the first question before - forgive me for the repition, if that is so.

many thoughts here - first, while it is true that we are all affected differently by this disease, I think there is so much attention being paid to that idea that we are at risk of losing sight of the magnitude of what we *share.*

by definition, every single one of us copes with rigidity, and/or bradykinesia, and/or tremor every single day. that is huge. and that is what this disease really is.

many of the so-called non-motor symptoms can and do occur outside the context of this disease - in fact, many of them occur outside the context of *any* named disease (constipation, depression, anxiety, insomnia, pain, sexual dysfunction, fatigue, etc.)

the three motor symptoms don't occur outside of the context of neurological disease, that is why they are used to define PD, and that is the bedrock of what we share.

I can say "yeah, bradykinesia is my primary symptom," to any of you, and most, if not all of you would understand. if i said the same thing to 20 random people on the street - even if i called it slowness of movement, and *even* if i gave them a demostration and described how it feels, chances are they would neither have known what i was talking about when i first spoke to them, nor would they walk away really understanding.

Every single one of those people would know exactly what i was talking about if i mentioned any of the non-motor "symptoms"' above.

That is not to minimize the impact thhat any of those things has on anyone w/PD''s life, nor is it to say that they are not symptoms (though i believe i could make a very strong case that it is as or more likely that they are not symptoms) I am just trying to illustrate the magnitude and nature of what we share and what makes us different from other folks.

This reality is significant to me - i am trying to articulate why... i think it is as simple as the fact (from my perspective, at least, it is fact) that the therapies available to ameliorate these cardinal symptoms are woefully inadequate, and, as the bedrock of which this disease is made, the pursuit of better [motor] symptomatic therapies should continue to be the first priority. this is buttressed by the fact that therapies already exist for most of the so-called non-motor symptoms.

For example, i am taking wellbutrin for depression and it works great; there are any number of things i can take for anxiiety or to help me sleep - the list goes on.

To my mind, the firrst order of business if we want to invest $$ in the treatment of non-motor "symptoms" should be to test current therapies in a PD population. If they work, you're done - if they don't, then there is work to do. I am not sure that this is happening - maybe it is!

And i just want emphasize that i am *sure* others will have different opinions, and I would very much like to hear them - and apologize in advance if I said anything that was insensitive - it is a learning experience for me every time i reach out like this - please educate me.

b

[paula_w]

OK second time, lost the first before either of you posted but agreed that motor symptoms are the first priority. I've had it for 20 yrs and I need to be able to swallow. I don't like it when I fall. And boann, you said it right when you said others don't understand. They can make us look good with med, but truth is, I NEVER feel good, no matter how good I may look to others.

We need #2, more and better treatments. I take only sinemet and amantadine. It takes a lot of sinemet, but I'm not dyskinetic. I get dyskinetic when I add agonists, comtan, or CR. Amantadine works with sinemet for me. So meds to control the side effects of sinemet would be ok I guess, but I certainly would not put it as a priority over finding a better treatment.

Non-motorsymptoms are especially useful in looking for biomarkers, or to help find a cause; also to help others understand our behaviors. But nothing should take priority over finding the best treatment or cure.

[reverett123]

...'cause goodness knows we have them. Maybe that's one of the symptoms.

But seriously, the very fact that your question is a difficult one ( i.e. what are our individual major symptoms) tells us that we are dealing with an unusually complex mess. My vote would be for cutting through the confusion of the symptoms in search of the cause. Unfortunately for us, treatment of symptoms generates far greater profits than cures and altruism is not a corporate quality.

So it's left to freelancers like us to make the attempt to sort it out. And I really do believe it is possible. I have immersed myself entirely too deeply in the subject for the last four years and, while my head spins at times, I am convinced that the data is there but it is hard to reach for three reasons- 1) the economics just mentioned is one; 2) the sheer volume generated over the last twenty years has greatly slowed the integration of new information into the whole; and 3) PD falls into the cracks between neurology, endocrinology, immunology, and gastroenterology. Over just the last five years, researchers like Carvey at Rush, Bin Liu and J.S. Hong at the NIH, and a dozen others have published findings that make convincing arguments that of the four, neurology comes into play last as the other three factors damage the nervous system.

But how in the heck are you going to convince a room full of neuros of that? They don't have time to keep up with the literature of their own profession. Data floods in so fast. They can't be expected to be up on the effects of the endocrine system - even though their patients are so hugely vulnerable to stress. Or the immune system - even though neuroinflammation is almost universal in PD. Or the GI system - even though the roles it plays are too numerous to list here. Yet, as Dr. William Langston pointed out in the PDF newsletter, PD is only going to be solved by multidisciplinary teamwork.

In short, even though research must go on, it must be merged into the existing knowledge-base if it is to have value. That's why I am advocating an online think tank in the "private" forum. Cheap and accessible, it could draw researchers from all these disciplines and from all over the world. It could run indefinitely and act as a constantly updated snapshot of what is known. Most importantly of all, the bits of treasure that might emerge from this data mine could be of immediate benefit to those of us fighting right now.

[boann]

Originally Posted by reverett123

But seriously, the very fact that your question is a difficult one ( i.e. what are our individual major symptoms) tells us that we are dealing with an unusually complex mess.

agree 100% it is a complex mess, and that is even if we are just talking about the neurological part of it - i know very little about the other areas you mention. nonetheless, the current diagnostic criteria are such that every person diagnosed w/PD experiences 2 out of 3 of the cardinal symptoms. now. one could argue that the cardinal symptoms are inadequate or inaccurate or whatever, but the fact of the matter is that in spite of that complexity, i share at least one major motor symptom with every other person diagnosed w/PD.

Originally Posted by reverett123

My vote would be for cutting through the confusion of the symptoms in search of the cause.

agree also that search for cause is important, as is search for disease modifying therapy, however, given that:

• average age of diagnosis is 60 (roughly), and
• average life expectancy is 79,

something on the order of half of the people diagnosed w/PD are going to have to manage its symptoms for a minimum of 19 years, and given that:

• levodopa's useful life lasts on average 5 years (a number that decreases in tandem with age of onset, which, for me, was 32), and
• the only option after levodopa becomes completely unbearable is brain surgery, the long term efficacy of which in unknown,

and given that time horizon to a neuroprotective therapy is virtually guaranteed to be much longer than that to a better symptomatic therapy (consider the fact that, unlike symptomatic benefit, we are currently unable to determine whether or not neuroprotection has occured), personally, i see a clear need for a better symptomatic therapy to hold us over until the other two goals are accomplished.

Originally Posted by reverett123

So it's left to freelancers like us to make the attempt to sort it out. ...That's why I am advocating an online think tank in the "private" forum.

agree 1000% and am looking forward to reading and talking more about this in the private forum.

thanks,
b

[boann]

thank you - i am right with you on the swallowing and falling (and everything else, clearly!)

fell a lot last year and maybe the year before. nothing broken but bloody hands, knees and face. don't try to run for the train anymore, and walk more carefully in general. seems to be working (knock wood.)

[reverett123]

Originally Posted by boann

agree 1000% and am looking forward to reading and talking more about this in the private forum.

thanks,
b

I will see you there.
-Rick