is this a possibility?

[Conductor71]

Originally Posted by paula_w

but it sounded as good as anything else we have to choose from; perhaps satire that complex could simply be explained along the way. i was never a science fiction reader...now i'm living it.

Paula,

No criticism intended. I get the need to join hands, heads, forces, etc. and I do like the idea on genomic studies. I just think we already are misunderstood by the majority of people walking around with "normal" brains, so I think going to the extent of pd only communities rather works against us. Guess I am saying society and government already marginalize us enough, and though not intended, feeds right into that. My instinct is to say, yes -great, sign me up but long term could be more than we bargained for.

I had a friend who had started a support group for people suffering from chronic illness and I thought that was neat. Not that I want to see others suffer but it helps to snap us out of that PD mindset and realize that we all face adversity to varying degrees but it's how we rise above it that is important. It got me thinking that it would be great if we could have an org for all of us: MS, PD, etc. with "life sentence" diagnoses and have an annual retreat of some sort with complementary therapies like massage, exercise, with nutritionists on hand. More a place of rejuvenation that of course in my perfect would be written out as a script and fully covered by insurance. The locale would be anywhere tropical, so long as it is French Polynesia every other year. We would be tripping over coconuts so we could prove or disprove how beneficial that is in one visit in a special needs Club Med (no pun intended). Doctors get this perk while "learning", so I say we take field trips to find curatives. Think of the exotic places tied to all those herbal studies on PubMed that lie in the Valley of Death...here we come!

[paula_w]

i didn't pick up on that either! lol
thanks Laura!

[Conductor71]

Originally Posted by paula_w

i didn't pick up on that either! lol
thanks Laura!

Paula,

To answer your earliest question on entire genome; I think this geneticist suggests exactly what you mean:

Currently, a screen of all known PD genes using conventional methods (sequencing and gene-dosage studies) is at least as expensive as sequencing the entire exome of an individual, which can be conducted for as little as US$5,000, with prices continuing to fall. Nevertheless, the key element for any meaningful study of the role of genetic factors in PD will remain the collection of a demographically and clinically well-characterized patient sample, such as the one described by Alcalay and colleagues.

For the full argument in support of genetic screening for early onset people (they are impacted more).

http://www.nature.com/nrneurol/journ....2010.197.html

Is this along the line of what you were thinking?

Laura

[lou_lou]

gdnf and our own cells from our own bodies - it is the way we will ever heal anything for anyone - gnf keeps brain cells from dying - the delivery system is what needs updating - they know this - it has been successful - but bpharma wants us to buy pills - pray for our enemies

[lou_lou]

gdnf and our own cells from our own bodies - it is the way we will ever heal anything for anyone - gnf keeps brain cells from dying - the delivery system is what needs updating - they know this - it has been successful - but bpharma wants us to buy pills - pray for our enemies

http://www.eurekalert.org/pub_releas...-slh011212.php

[paula_w]

Originally Posted by Conductor71

Paula,

To answer your earliest question on entire genome; I think this geneticist suggests exactly what you mean:

Currently, a screen of all known PD genes using conventional methods (sequencing and gene-dosage studies) is at least as expensive as sequencing the entire exome of an individual, which can be conducted for as little as US$5,000, with prices continuing to fall. Nevertheless, the key element for any meaningful study of the role of genetic factors in PD will remain the collection of a demographically and clinically well-characterized patient sample, such as the one described by Alcalay and colleagues.

For the full argument in support of genetic screening for early onset people (they are impacted more).

http://www.nature.com/nrneurol/journ....2010.197.html

Is this along the line of what you were thinking?

Laura

yes thanks Laura precisely. how does the cost of doing that and having all that information for pwp compare to inconclusive reasearch? research hasn't helped us much yet.