It has been my observation that Parkinsn membership motivation is related
to wanting a question answered. Most folks have tunnel vision and refuse to
read anything that doesn't relate to their interest. The old saying, "You
can lead a horse to water..but you can't make him/her drink" applies to the
readership.
Periodic postings don't reach those folks. People don't relate P-I-E-O to
Parkinsn so they think P-I-E-N-O postings aren't meant to provide useful
information for them. If the list had an annual resubscription requirement,
only the core of Parkinsn, about 200 people, would remain from year to year.
The longer folks stay, and their memory wanders is the motivation of the
periodic postings.
Mail screening works but useful information is lost by those who are in a
fix and need to do something with their subscription.
The new breed of surfer and subscriber demands instant gratification and
detailed instructions while clear and concise and tolerated by veterans of
the net, are no longer suitable. The new folks don't get it that a machine
rather than a parkie or volunteer handles subscriptions. There are no
employees here.
I've tweaked the address of the page with the mail management buttons so
that it won't wrap in email and work to initiate your default browser and
go to the page.
The tweaked address for the P-I-E-N-O maillist page is:
http://parkinsons-information-exchange-network-online.com/parkmail/
Don't worry about the Notice page that appears, you will be taken to the
proper page.
Click on the button that applies to your Parkinsn mail option. When you
move the mouse over the buttons, a description of what the button does
appears.
What happens when you click a Mail Management button is your default email
program opens and the email is preaddressed and the appropriate information
is automatically inserted into the body of the message. With the exception
of the Subscribe button which requires a FirstName and LastName, the
commands are complete. Just send the message. Depending on the net, the
listserv or your email provider, an acknowledgement message from the
listserv will appear in your mailbox.
Requirements:
You must interact with the listserv from the same email address that you
used when subscribing. If you have changed ISPs, unless the mail settings
for the old ISP are still in your email program, it won't work.
Give the listserv a day to reply. If you are using one of the free email
addresses or AOL even though you click the send button on your email
program, your ISP may not send your message over the internet for hours,
minutes or days.
If you click on a Mail Management button and your email program doesn't
open or nothing is placed in the body of the message, your browser's email
settings are set wrong. If you use another browser also, try it.
The P-I-E-N-O (Parkinsons Information Exchange Network Online) site has
dual purpose search boxes on each page. One site to search location is the
Parkinsn Archive Treasures/Parkinsn's List Drug Database.
For those considering DBS, searching the Top50 Neurological Sites will
return results of every major content rich page from the major surgical
centers, including Medtronic.
One of the first trail blazers on the DBS scene was Dr. Alim Benebid in
Grenoble France. For the French readers, searching for Benebid on the Top50
Neurological Sites will return an article in French giving Dr. Benebid's
background. Search for Benabid. Other sites will be returned that contain
some of his references. Searching the Parkinsn Archive Treasures/Parkinsn's
List Drug will also return his latest references (abstracts).
One of Dr Benebid's first DBS patients was Don Sandstrom and his story
appears at:
http://www.parkinsons-information-exchange-network-online.com/archive/087.html
Dr. Kim Burchiel at the Oregon Health Sciences University appears to have
done more DBS implants than anyone else in the US. Searching for Burchiel
in the Parkinsn Archive Treasures/Parkinsn's List Drug Database will locate
all of Dr. Burchiel's references (abstracts).
Microelectrode recording lengthens the procedure and those who have
mastered the art, use it only as indicated. A half day procedure turns into
an all day OR trip when microelectrode recording is used. There is no
operating room table that is comfortable enough for that. Some patients beg
for the ordeal to be over.
DBS to the STN in one abstract was credited with helping to reduce the need
for levodopa.
That abstract by Dr. JL Molinuevo in Spain is at:
http://www.parkinsons-information-exchange-network-online.com/archive/thalam
ot.html
Almost any Movements Disorder Specialist will discredit the name and record
of Dr. R. Iacono. This type of behavior is professional jealousy and
encouraged by their association with the AAN. AAN doesn't like Parkinsn
either since we are a patient advocacy group. Searching for Iacono on the
Top50 Neurological Sites will locate him and his record.
I've met Bob and I liked him and I know some of his success stories as well
as his failures. He is human. Dr. Dee Silver in San Diego CA is one of
Bob's most vocal critics and most of the horror stories spread by Movements
Disorder guys, attribute him as the source.
Use the P-I-E-N-O Portal for its content rich sources.
[log in to unmask] Search the parkinsn archive online at:
http://james.parkinsons.org.uk
Catch the Parkinsn's List Online messages at:
http://www.parkinsons-information-exchange-network-online.com
Click the navigation ads and use the new search tools
John Cottingham
