Dear Patrick,and all PD's online
I think it would be worth while for you to post your survey request
again. We are in desperate need of some scientific data on how to treat
the desease PD. It is interesting that even the medical world is
lacking in this data. Anybody with PD reading this, please assist
Patrick in compiling the scientific data. You do not have to use your
name if you would pr
efer not too. Henry Guttentag ([log in to unmask])
SURVEY
Message: 29
To: Multiple recipients of list PARKINSN
<[log in to unmask]>
From: "PATRICK J. MARTIN" <[log in to unmask]>
Subject: 900+Club Database
Date: Fri, 27 Oct 1995 15:55:22 EDT
The drug menus reported by our members are varied (understatement of
the
millenium). There are about 2 dozen drugs selected for parkinsonism
alone.
When we add the drugs being prescribed to mitigate the depression,
constipation,
mouth dryness, edema, dizziness, cramps, heartburn, and such that tag
along with
PD and its symptomatic treatment, we reach the 3-4 dozen level. Now
add the
drugs used for other medical indications such as diabetes,
hypertension,
hypothyroidism, menstrual difficulties, and other human ailments.
Anyone care
to guess the grand total?
Our doctors seem to have their favorite packages or use a randomizer to
help us.
We are sometimes allowed to participate in the selection when we come
across as
knowing something about ourselves and the menus. Some doctors even
seem to be
interested in what their peers are doing.
I propose (and volunteer) to assemble the data for the 900+ Club
participants
into a usable database that can be manipulated to possibly draw some
inferences
or conclusions about PD drug menus. I submit the format below for your
contribution of your data and experience.
------------------------------------------DATABASE
FORMAT----------------------------------------
Name:Patrick J. Martin
e-Mail:([log in to unmask])
Zipcode:95126-1546
Age:69
Weight:175
Sex:Male
Years Parkinsonian:9
Years Medication:6
Medical Indications:
1.parkinsonism
2.hypertension
3.tremor
Medications:
NAME DOSAGE(mg X daily frequency)
1.Procardia X L 60 X 1
2.atenolol 50 X 1
3.Sinemet CR 50/200 X 3
4.carbidopa/ldopa 25/250 X 3
5.selegiline 5 X 1
6.amantadine 100 X 1
7.Vitamin C 500 X 2
Comments:
1.Procardia XL is a calcium-channel blocker for hypertension
2.atenolol is a beta-blocker for hypertension
3.bromocriptine worked for a year before I developed an unbearable low
back
backache
4.Permax tried but was not able to titrate out of the akinesia that
resulted
5.selegiline reduced to 5mg from 10mg/day to bring heartburn down
6.tremor is my biggest problem
7.bradykinesia signals time for dosage
(Comments should include, but not be limited to, your experiences with
the
FDA-approved drugs and alternatives such as NADH, melatonin,
nutritional
supplements. We are looking for both positive and negative comments
since this
is a unique contribution to be made to the PD literature. Your history
of drug
menu changes is also important. Don't forget to include your
observations on
adverse reactions and interactions.)
------------------------------------------------------------------------
--------
-
----------------------------
Use your word processor to delete my data; substitute your own and post
it to
the List. I will pick it up for the database. If you want anonymity,
send it
to me directly and I will send you an identifier for your use. Data
will be
aggregated and individual identities will be protected. If we all
choose to
post it to the List, others may be better able to draw inferences and
conclusions by preparing databases better than the one I have in mind.
Let's give it a try!
Pat Martin 69,9 ([log in to unmask])
You wrote:
>
>TO ALL PD'S ONLINE
>
>Dear Patick:
>I am shocked that you only received so few replies.We are in such
>desperate needs for the information.The medical profession does not
>have accurate information.
>I belong to a support group and we have one patient in the group who
is
>trying to put a similar report/survey together but the most he will
>have in a few months is 35-45 participants.
>I thought that your suggestion would be an excellent tool and
>oppertunity with so many in PD"S in our pool.
>I suggest that another try might be well worth it.
>Sincerely Henry Guttentag ([log in to unmask])
>
>ou wrote:
>>
>>Dear Henry:
>>
>>I have received only a half-dozen replies(including yours) to my
>request for the
>>900+ Club data and am at a loss to explain the apparent lack of
>interest. Net
>>results - no survey results. Any comments or suggestions are
welcome.
>>
>>Pat Martin 69,9 ([log in to unmask])
>>
>>
>
