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Old 10-29-2008, 01:19 PM
boann boann is offline
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Join Date: Sep 2006
Posts: 165
15 yr Member
boann boann is offline
Member
 
Join Date: Sep 2006
Posts: 165
15 yr Member
Default thank you, ron!

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
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"Thanks for this!" says:
Ibken (10-30-2008)