The more I tend to read about this Oprah show thing the more it is
starting to bother me.  Some of
you seem to feel that getting on this show is just a lark.  Maybe before
any of you embark on your "lark" into daytime tv you should see my dad.
He is 76 and is very near the end of his battle with life and with
Parkinson's.  His rigid, twisted yet still shaking body is shutting down
a little more each day.  I can't remember the last time I could look
into his eyes that they were not filled with tears. Maybe the calling
for more research funds should be left to those who can handle it with
dignity, not use the show as a soap box for homosexual recognition, or
as Mr. Stan wants to show all the things that parkies can do making it
look like Parkinson's is just a "lighthearted" disease and not all that
serious.  Maybe if you were nearly 80 years old like my mom and a full
time care giver to someone as seriously stricken with Parkinson's as my
dad is you would consider the chance to go on national television as a
hope for the future, as a hope for more research, as a hope that people
who have never even heard of Parkinson's will now hear about it and
understand its needs,  as a hope that someone else may not suffer as
much as my dad is suffering now. Parkinson's is not a joke, it is not an
inside track to homosexual foreplay on national television, it is not
what type of fancy clothes to wear...it is an insidious, painful,
horrible disease that sucks the life out of once vital, beautiful men
and women.
Stop using may Dad's suffering and many more suffering like him for your
selfish interests on national television.
Arla L. Arena
Natrona Heights, PA
>----------
>From:  Automatic digest processor[SMTP:[log in to unmask]]
>Sent:  Sunday, February 23, 1997 3:35 PM
>To:    Recipients of PARKINSN digests
>Subject:       PARKINSN Digest - 23 Feb 1997 - Special issue
>
>There are 24 messages totalling 926 lines in this issue.
>
>Topics in this special issue:
>
>  1. RE; Hoehn and Yahr
>  2. GAY PWP's are EXCLUDED! (6)
>  3. information   HELP (2)
>  4. Thanks Margaret
>  5. FCC FAQ on Access Charge Reform (Internet Modem Tax)
>  6. FRED> Tolcapone Info Requested (2)
>  7. Tolcapone Info Requested
>  8. Dizziness (3)
>  9. SINEMET HALF-LIFE-Reply to Dennis.
> 10. Antioxidant juice shortens OFF-periods?/OPRAH
> 11. CARE list information (fwd) (fwd)
> 12. [Fwd: new PWP-nauseated]
> 13. GAY PWP's are INCLUDED
> 14. HUMOR
> 15. wellbutron and PD
>
>----------------------------------------------------------------------
>
>Date:    Sun, 23 Feb 1997 08:48:26 -0500
>From:    [log in to unmask]
>Subject: RE; Hoehn and Yahr
>
>In addition to the help of John Cottingham I also found this on the Internet:
>
>Hoehn and Yahr Staging of Parkinson's Disease
>
>    1.Stage One
>           1.Signs and symptoms on one side only
>           2.Symptoms mild
>           3.Symptoms inconvenient but not disabling
>           4.Usually presents with tremor of one limb
>           5.Friends have noticed changes in posture, locomotion and facial
>expression
>    2.Stage Two
>           1.Symptoms are bilateral
>           2.Minimal disability
>           3.Posture and gait affected
>    3.Stage Three
>           1.Significant slowing of body movements
>           2.Early impairment of equilibrium on walking or standing
>           3.Generalized dysfunction that is moderately severe
>    4.Stage Four
>           1.Severe symptoms
>           2.Can still walk to a limited extent
>           3.Rigidity and bradykinesia
>           4.No longer able to live alone
>           5.Tremor may be less than earlier stages
>    5.Stage Five
>           1.Cachectic stage
>           2.Invalidism complete
>           3.Cannot stand or walk
>           4.Requires constant nursing care
>Thanks John---
>Jim Ryan
>57/8
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 08:10:06 -0500
>From:    Jeremy Browne <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>Hi Ivan M Suzman <[log in to unmask]>, you wrote
>
>>There are many reasons why it is ABSOLUTELY NECESSARY  for me to IDENTIFY
>>myself as GAY to the Parkinson's List......
>
>I find it difficult to understand why you need to thrust your gayness at
>us. I am fairly strongly heterosexual, although, like many men (usually
>undeclared) I do have the occasional feelings of love for another man.
>
>In neither case, though, do I find it acceptable to make other people
>accept my inclinations, nor that I should expose them to any
>demonstration of my feelings for another person. Yes, I am pleased and
>proud when I am with someone I love, but I don't have to subject other
>people to these emotions.
>
>>     Could the sight of two men holding hands in loving support of each
>>other , a PWP and his CG, and REPRESENTING us on OPRAH,  make the
>>Parkinson's world recoil in internal turmoil?
>
>PEOPLE supporting (& loving) other PEOPLE, of whatever race, creed,
>colour, sex or sexual persuasion, is not offensive. People, of whatever
>sex or persuasion, making a point of their OTHERNESS most certainly IS.
>
>You and I, Ivan, are here for the same reason: we have Parkinson's
>Disease. You dilute our message to the world at large if you insist on
>the fact that you are gay, instead of concentrating on the messages to
>do with you being PWP.
>
>>    These expressions of love and support, SO acceptable in the hetero
>>world, would probably be the source of an outcry of "OH NO, DON'T  LET
>>THIS BEHAVIOR REPRESENT US!"
>
>No, I don't find them acceptable in the hetero world. In public I limit
>my behaviour towards my wife to what will not embarrass others. Can you
>not do the same?
>
>>     So my question is, WHAT PUBLIC IMAGE OF PWP's AND THEIR
>>CAREPARTNERS is comfortable for you??  What public image is unacceptable
>>as a role model of our common battle??  Again, PLEASE be honest.
>
>It's like advertising - it should be clean, honest and decent. That last
>word includes "discreet"
>
>>and, "Proud-to-be-gay!"
>
>Why? Did you work at it, develop it, build it from a small idea to
>completion, or did it just happen? I would no more say I am PROUD to be
>heterosexual than that I am proud to have Parkinson's: both just
>"happened"!
>
>Ivan, I do seem to be getting at you a bit: NOT intended as a personal
>attack, but as a way of refocussing our image on the PWPness, and
>whatever we can get done about that.
>
>--
>Jeremy Browne - [log in to unmask]
>Shaking Hands BBS - +44 (0)1252 626233 - Fidonet 2:252/160
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 09:49:40 -0500
>From:    Bent Willow <[log in to unmask]>
>Subject: Re: information   HELP
>
>top ,have never h=E5s a blood pressure problem   am a senior citizen and =
>my
>wife is now in her eight year i have a companion for her 5 days a week 10
>to 4 p.m. but after that and the week end its  holy terror .i have now be=
>en
>at the share giving over a year and findiong that i just cant handle it .
>am i been selfish ? cant iunderstand what she is going thru? have tried
>many avenues seeking help   but nothing thus far..anyone out there please
>come to rescue Thank u.
>
>Sam----------
>
>Sam, you are not selfish.  You obviously love your wife, and feel
>responsible to care for her 'until death do you part.'  What you are not
>considering (or perhaps you are), is that the death that parts you both m=
>ay
>be your own.
>
>And what will happen to your wife then?
>
>Care-providers for people with disease and disability have a high mortali=
>ty
>rate.  We, unfortunately, live in an age where saving dollars on care has
>become more important than saving the health and lives of care-givers.
>Consequently, we in the medical profession are constantly discharging fra=
>il
>senior citizens  from the hospital to the care of their  equally frail
>senior citizen spouses.
>
>Please consider hospitalizing your wife so that she can be discharged to =
>a
>nursing home.  If you were to die, such action would be automatically
>taken, thus requiring your poor wife to deal with the double trauma of yo=
>ur
>death, and adjustment to nursing home living..  If the action is taken no=
>w,
>you can emotionally support her transition out of your home.
>
>Please let us know how you're doing.
>-------
>Regards
>Mary Ann Ryan RN
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 09:50:01 -0500
>From:    [log in to unmask]
>Subject: Thanks Margaret
>
>Margaret Tuchman also posted and answer to my query. Thanks Margaret--
>Jim Ryan
>57/8
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 04:55:14 -0500
>From:    "John S. Walker" <[log in to unmask]>
>Subject: FCC FAQ on Access Charge Reform (Internet Modem Tax)
>
>This is an update on a previous discussion
>
>-------------------------------------------------
>
>Subject: FCC FAQ on Access Charge Reform (Internet Modem Tax)
>Date: Thursday, February 20, 1997 11:01 AM
>
>The FCC has posted a FAQ entitled "Fact Sheet on the FCC, Internet
>Service Providers and Access Charges."  It can be found at
>
>   http://www.fcc.gov/Bureaus/Common_Carrier/Factsheets/ispfact.html
>
>By the Way, Comm Daily reports that the FCC received 302,000 e-mails
>in response to the Access Charge Reform NPRM.
>
>Remember:  Comments in response to the Notice of Inquiry are due March
>24 (http://www.fcc.gov/isp.html).  There will be a FCBA CLE seminar on
>the subject March 6 in Washington DC.  For information, call Robert
>Cannon at 202-418-1428.  A description of the seminar can be found on
>
>   http://www.cais.net/cannon/
>
>Robert Cannon
><[log in to unmask]>
>
> -----------------------------
>-------------------------------
>
>Excerpt from CSS Internet News       ,-~~-.____
>For subscription details email      / |  '     \
>[log in to unmask] with        (   )        0
>SUBINFO CSSINEWS in the             \_/-, ,----'
>subject line.                          ====           //
>                                       /  \-'~;    /~~~(O)
>"On the Internet no one               /  __/~|   /       |
>knows you're a dog"                 =(  _____| (_________|
>
>-------------------------------
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 10:09:27 -0500
>From:    Allan Schumann <[log in to unmask]>
>Subject: Re: FRED> Tolcapone Info Requested
>
>Please send me info on tolcapone and when available.
>MY E-mail adress is   [log in to unmask]
>THANK YOU
>
>aLLAN
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 10:21:32 -0500
>From:    Allan Schumann <[log in to unmask]>
>Subject: Re: FRED> Tolcapone Info Requested
>
>Fred, I gave you my E - Mail address a few minutes ago. If you prefer my fax
>number, it is 505-792-1433. Thank you in advance for the info.
>
>Allan
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 10:26:00 -0500
>From:    Allan Schumann <[log in to unmask]>
>Subject: Re: Tolcapone Info Requested
>
>My residence address is.  310 San Andres, CORRALIS, NM  87048
>THANKS
>
>ALLAN
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 10:39:29 -0500
>From:    Donovan White <[log in to unmask]>
>Subject: Dizziness
>
>This morning my mom (67, diagnosed with PD about 3 weeks ago) experienced
>dizziness, which she hadn't before. From what I've read, dizziness seems to
>be related more to PD drugs than to PD itself (or it can, of course, be
>attributable to other factors). Here are the facts:
>
>She didn't eat a lot last night. She took her morning dose of Sinemet
>(25/100 3x/day) about 30 minutes prior to eating (which is about 10 minutes
>more than she usually waits before a meal). She experienced the dizziness
>after taking the Sinemet (maybe 10 minutes or so) and before eating. She
>thought the dizziness might be related to the fact that she was very hungry
>(I don't see that one). She felt slightly better after she ate.
>
>What I'm wondering is -- has anyone had experiences of dizziness while
>taking Sinemet? Could it be related to the fact that she was hungry and
>hadn't eaten a lot the night before?? Any thoughts?
>
>Thanks, again.
>
>Debbie White
>
>
>
>
>
>[log in to unmask]
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 07:32:14 -0500
>From:    LISA CRUMRINE <[log in to unmask]>
>Subject: Re: Dizziness
>
>Donovan White wrote:
>>
>> This morning my mom (67, diagnosed with PD about 3 weeks ago) experienced
>> dizziness, which she hadn't before. From what I've read, dizziness seems to
>> be related more to PD drugs than to PD itself (or it can, of course, be
>> attributable to other factors). Here are the facts:
>>
>> She didn't eat a lot last night. She took her morning dose of Sinemet
>> (25/100 3x/day) about 30 minutes prior to eating (which is about 10 minutes
>> more than she usually waits before a meal). She experienced the dizziness
>> after taking the Sinemet (maybe 10 minutes or so) and before eating. She
>> thought the dizziness might be related to the fact that she was very hungry
>> (I don't see that one). She felt slightly better after she ate.
>>
>> What I'm wondering is -- has anyone had experiences of dizziness while
>> taking Sinemet? Could it be related to the fact that she was hungry and
>> hadn't eaten a lot the night before?? Any thoughts?
>>
>> Thanks, again.
>>
>> Debbie White
>>
>> [log in to unmask]
>
>
>yest i had experienced dizzyness as well as dry mouth and headaches, the
>permax really wacked me.  take it real slow, ease gradualy into a full
>dose, it may take weeks or months to get up to full dose.
>
>good luck with your mom
>lisa
>[log in to unmask]
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 07:36:28 -0500
>From:    LISA CRUMRINE <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>Barbara Mallut wrote:
>>
>> Ivan....
>>
>> One thing I've noticed about the members of this List is that folks don't
>> really seem to care one way or the other if anyone is part of a minority,
>>be
>> it religious, ethnic, gay/lesbian... even LAWYERS! <grin> (That's a joke,
>> people)
>>
>> I believe you're not seeing the real issue here and that is we are ALL
>>alike
>> when we have Parkinson's.  I dont' give a rat's ass whether you're gay or
>>not.
>>  I don't care if your blue and tattooed!  I couldn't' care less if you
>>worship
>> a tree or an invisible entity, or if you worship anything at all.  But I DO
>> care that you're life is burdened with the this awful disease.
>>
>> I suggest you consider that there may be others in our PD List community
>>who
>> are gay/lesbian who just don't see the relevance in bringing that up in a
>> group which is together because they have PD, not because of their sexual
>> orientation... I'd hope they WOULD feel free to mention that if they felt a
>> reason to do so...
>>
>> EACH of us on this List is unique, Ivan.  And each of us will be on Oprah
>> (should we ever make it that far) as INDIVIDUALS... Individuals who have
>>one
>> thing in common.... PD.  If you are affectionate towards your partner, that
>>in
>> no way reflects upon me or my own sexuality, nor upon anyone else's, OR
>>upon
>> our having the same disease.   In my opinion, you're making an issue of
>>what
>> appears to me to be a non-issue, at least as far as PD and Oprah are
>> concerned.
>>
>> One last thing, Ivan.  Last year you posted here on the list about being
>>gay
>> and it barely caused a ripple.   THIS year you've posted the same
>>information
>> once again, and other than a few "No biggee, live and be well" messages
>>(and
>> any you may have received via email, which of course, we're not privy to),
>>the
>> general response here has been "Ho hum."  I urge you to consider that it
>>MAY
>> be that most of us just don't CARE what anyone's sexual orientation is.. or
>> maybe we're just all too damn lethargic 'cause of the PD to make a big
>>stink
>> over it.
>>
>> Either way, Ivan, if you're "getting any", consider yourself lucky, 'cause
>> most Parkies seem to be born again virgins! <g>
>>
>> Barb Mallut
>> "Lil_Honey" on the PD Chat
>> [log in to unmask]
>>
>> ----------
>> From:   Parkinson's Information Exchange on behalf of Ivan M Suzman
>> Sent:   Sunday, February 23, 1997 1:40 AM
>> To:     Multiple recipients of list PARKINSN
>> Subject:        GAY PWP's are EXCLUDED!
>>
>> >From the midwinter desk of Ivan Suzman  ([log in to unmask])............
>>
>> Dear listmembers,
>>
>> Thank you all who have written so far, and  shared your feelings about
>> my proclaiming my GAY  sexual orientation to our listmembers..
>>
>> There are many reasons why it is ABSOLUTELY NECESSARY  for me to IDENTIFY
>> myself as GAY to the Parkinson's List......
>>
>>   Here are just two examples:
>>
>> 1. OUR PUBLIC IMAGE ON THE OPRAH WINFREY SHOW
>>
>>       In the last few wonderful weeks, mostly thanks to the DEDICATED
>> work of Stan Houston and Barb Mallut, we have teasingly,  but also very
>> seriously,  begun our first effort to be visible on the OPRAH show.
>>
>>      Could the sight of two men holding hands in loving support of each
>> other , a PWP and his CG, and REPRESENTING us on OPRAH,  make the
>> Parkinson's world recoil in internal turmoil? Would our Parkie style of
>> propriety, especially in this age of Udall Bill work, discriminate
>> against us same-gender partners??
>>
>>       WE talk about being VISIBLE, but the heterosexual PWP 's and CG's
>> are burying the thousands of GAY  Parkinsonians. An obvious fact supports
>> this:
>> I AM THE ONLY GAY PWP who feels safe enough, so far, to be open about my
>> sexual orientation. Ask yourselves why this is happening...............
>>
>>       If I, as a gay, younger (47), blue-eyed blond, bearded  PWP, held
>> on to,   or hugged, or gently kissed his very cute,  special, 32 year-old
>>  male friend ON THE AIR,  and while REPRESENTING OUR  PWP COMMUNITY, that
>> behavior  would be perfectly natural for me.  But  a lot of our
>> listmembers would probably, I am disheartened to say, find this behavior
>> to set off red flashing sirens, screaming," out-of-bounds!" Is this
>> fair???
>>
>>     These expressions of love and support, SO acceptable in the hetero
>> world, would probably be the source of an outcry of "OH NO, DON'T  LET
>> THIS BEHAVIOR REPRESENT US!"
>>
>>     So, listmembers, what do you feel is acceptable?  Please be honest.
>> I already know from  at least one message sent to me after  I had said,
>> like Barb Mallut had also said with an excitement that had me in stitches
>> with laughter,  that I MIGHT enjoy seeing a man wearing a kilt (I didn't
>> say  anything to suggest I would pursue dear Jeremy Browne!), that the
>> Parkinson's Community has never confronted the homophobia that pervades
>> and divides us from one another..
>>
>>    And unless we are open about our worries, we cannot move towards a
>> consensus.
>>
>> 2. CAREGIVER IMAGE
>>
>>    If you look through the MAGAZINES AND FOUNDATION REPORTS  on
>> Parkinson's (at least what I've seen), we GAY and LESBIAN Parkinsonians
>> have NEVER EVER been shown with our CAREGIVING PARTNERS, as role models.
>>
>> ....It's no wonder gay and lesbian PWP's and CG's are hiding.  WE ARE
>> STILL EXCLUDED.
>>       ANd that EXCLUSION hurts us.
>>
>>      So, I must  pursue this, because I feel like I am a lone voice for
>> thousands of creative GAY and LESBIAN PWP's and CG's who are completely
>> INVISIBLE.
>> We have so much to give to our whole community, but will you let us do
>> that for the benefit of all, while meanwhile not pushing us into the
>> closets of the world??
>>
>>      So my question is, WHAT PUBLIC IMAGE OF PWP's AND THEIR
>> CAREPARTNERS is comfortable for you??  What public image is unacceptable
>> as a role model of our common battle??  Again, PLEASE be honest.
>>
>>............................................................................
>>..
>>
>>............................................................................
>> "The world is like a spider's web---touch it anywhere, and it quivers
>> everywhere"
>>
>>  Ivan Suzman
>> 47/10  Portland, Maine
>> land of lighthouses
>> and, "Proud-to-be-gay!"
>>
>>............................................................................
>>..
>>
>>............................................................................
>>.
>like others, i dont care if your gay or what ever, it doesnt make sense
>that this be the focal point of every communication.  I understand that
>being gay is a big part of your life, but... pd is something seperate,
>it seems like you have alot of gay issues to deal with. but they are two
>seperate and distince subjects.
>
>ok  lisa
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 11:44:06 -0500
>From:    Maggie Heeger <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>My thoughts on the possible Oprah appearance and how a gay relationship
>might affect it:
>
>If there's anything that would cause an audience to ignore the
>Parkinson's message and look at something else, we should downplay
>it...but not ignore it.
>
>If a gay couple was part of the guest list on Oprah, that wouldn't
>bother me. But if a couple were drawing undue attention to
>themselves--whether gay or straight--that would detract from the
>Parkinson's issue. And if Oprah felt the need to address, "What's it
>like being a gay person with Parkinson's?" I think that would be a
>drawback as well. She should ask, "What's it like dealing with
>Parkinson's?" rather than focus on any one specific group that has the
>disease.
>
>This appearance will be to educate the general public on Parkinson's,
>not the gay population, the straight population, the Catholic
>population, the Jewish population or any other segment. It's for all of
>us,  so the issues should be ones that everyone can identify with.
>
>No offense intended towards anyone...just my opinion
>
>Maggie Heeger
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 12:08:03 -0500
>From:    Henry Guttentag <[log in to unmask]>
>Subject: Re: information   HELP
>
>Dear Sam:
>at first I thought I should write a long response with suggestions. Then
>I read Gail's letter and I thought she did an excellent job giving you
>suggestions .
>It is hard Sam to be a caregiver but with outside support, which is a
>must, that is your only solution.
>Stay in touch with us. Gail also brought up that we as men find it harder
>to be CG as compared to women. She is correct.
>
>Will think of you often.
>Henry Guttentag CG for wife 62/8 [log in to unmask]
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 12:09:56 -0500
>From:    Lena Holmes <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>Ivan wrote:
>
>>There are many reasons why it is ABSOLUTELY NECESSARY  for me to IDENTIFY
>>myself as GAY to the Parkinson's List......
>>
>Ivan, there are just as many reasons (if not more) why it is NOT necessary.
>Live and let live. The focus is the fact that you and the rest of us are
>living with PD. And hopefully, by sharing meaningful information and
>inspirations, we all can grow.
>Keep writing but please, let this one go..........Lena.
>Lena Holmes  parttime caregiver for Ilmi 74/2
>Oakville, Ontario, Canada
>[log in to unmask]
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 12:38:48 -0500
>From:    Ernie Peters <[log in to unmask]>
>Subject: Re: SINEMET HALF-LIFE-Reply to Dennis.
>
>Dennis,
>
>At 09:43 23/02/97 -0500, you wrote in part:
>
>>With regard to Sinemet CR, it seems to me that the implication of the
>>statement that ' the "exponential decay rate" referred to the drug once
>>it was in the blood plasma' is that:
>>
>>1.      the exponential decay rate is operative on all deliveries of the
>>        drug, once they are in the blood stream.
>>
>>2.      this in turn will result in a small, but significant increase in the
>>        drug levels over the delivery period of the tablet, culminating
>>        in a peak at the end of the dose.
>>
>>If this is indeed what happens, it could explain end of dose dyskinesa, at
>>least as regards Sinemet CR.
>>
>>Dennis.
>>
>
>I agree Dennis, it could indeed explain it.  Whether a particular individual
>would suffer this effect would also be complicated by the exact Levadopa
>peak required to trigger the dyskinesia, how the timing/dosage level
>contributed to reaching this level and, not least, the food intake and
>digestion characteristics of the individual.
>
>Theoretically, if the half-life theory is correct, one would expect, if
>three Sinemet tablets were taken at equally spaced intervals throughout the
>day, that the 2nd tablet of the day lasts longer than the 1st and the 3rd
>the longest of the three. This is assuming similar food intake and exercise
>levels and that an agonist taken once daily in the morning is not spoiling
>the model.
>
>So much to take into account isn't there?
>
>Regards,
>
>Ernie Peters <[log in to unmask]>
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 12:44:59 -0500
>From:    [log in to unmask]
>Subject: Re: Dizziness
>
>Debbie,
>For what it's worth - I'm often dizzy.  I just figured it was part of the
>whole package.  Part of it PD, some of it medicines, and high blood pressure
>& low blood pressure contributing too.
>Maybe even the shock of finding out you have this nasty disease is a factor
>also.  Things that happened to your body before and you thought nothing
>about, now become noticeable as you manuver through this confusing diagnosis.
>My 3 year anniversary coming up in March, I don't think I'll celebrate but be
>glad I feel as good as I do.  Good luck with
>your Mom.  Hi Mom!
>
>Patricia  age 60, 3 years .
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 13:38:57 -0500
>From:    Ivan M Suzman <[log in to unmask]>
>Subject: Antioxidant juice shortens OFF-periods?/OPRAH
>
>>From the  desk of Ivan
>Suzman..............cureit@juno.com.........................-----*----*----:
>
>Hello again listmembers,
>
>You'll all LOVE this one.....about SHORTENING your OFF periods!!
>
>    This morning, my Sunday plan included a special  treat..my caregiver
>Becky drove me to the local bakery shop to try their fresh
>cinnamon-raisin rolls.
>
>    "want to try my juice,  Ivan??  Maybe it will help KICK in the
>medications."
>
>      It  looked good, so I tried the thick, pulpy juice, , along with my
>Sinemet and Eldepryl and NADH,   Well, guess what happened??
>
>  After ONLY 10 MINUTES my off-period vanished!
>
>      So there we were, Becky and I, brainstorming about inviting Oprah
>to come  to Portland with Tina Turner, to do  a benefit concert/show for
>PARKINSON'S  ....THINK BIIIGGG, right, guys?? and I said to Becky,
>
>     "THIS juice is truly amazing!  WHAT IS IN THIS STUFF????"
>
>       We looked on the label of what I must admit was slightly
>METALLIC-tasting orange juice, and BINGO! , there was my answer!!
>
>      The juice is called, "Desperately Seeking C -- Antioxidant  Drink."
> It is a product of a local, Scarborough Maine company called FRESH
>SAMANTHA.
>
>       The INGREDIENTS are:
>
>              Freshly Squeezed Orange Juice,  Mango, Papaya  Guava and
>Banana purees,  pure spring water, Vitamin C, Bioflavinoids, Rose Hips,
>Vitamin E, Selenium, Zinc, and Beta-Carotene.
>
>            AND, GET THIS FOLKS!!  I drank about 4 more ounces of  this
>juice  at 12:30, my next off-period, and within ONLY 6 minutes, I was
>right back up to speed.....in fact, I feel so much BETTER  than usual
>that I am going to DRIVE to my  Parkinson's support group meeting, which
>is at 2:00 today.a
>
>JUST HAD TO SHARE THE EXCITEMENT of what I hope is a DISCOVERY that
>merits the attention of all PWP's and
>CG's.................................
>
>Yours as ever,
>Ivan  Suzman
>47/10
>land of lighthouses
>Portland Maine                 37 beautiful sunny and windy.
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 13:56:03 -0500
>From:    Camilla Flintermann <[log in to unmask]>
>Subject: CARE list information (fwd) (fwd)
>
>Wanted to send this to Sam, new list member/CG but accidentally lost
>his post--others who have seen this, please excuse!
>----------------------------Original message----------------------------
>FOR NEW MEMBERS, HERE'S INFORMATION ABOUT THE CAREGIVERS LIST WHICH MAY
>INTEREST YOU---
>For the benefit of new members of the PD list, this is an update about
>CARE (Caregivers Are Really Essential),the sublist especially for PD
>caregivers
>  (CGs).  The need for such a list was evident from feelings expressed on the
>PD list that there were times when CGs needed to be able to "let off steam "
>in a place where this would not upset carepartners  (CPs).  Some of us have
>caregiver support groups, where we can safely express feelings, get practical
>support, and share experiences--others do not.  The CARE list serves this
>need,
> but DOES NOT shut off participation by CGs on the mainlist.We operate
>through
>a listserv at Miami University, Oxford,Ohio.  This is a closed list, and CGs
>who wish to join may send a request as follows:
>                 [log in to unmask]
>                 SUBscribe CARE (your first and last names)
>
>Instructions will then be sent to you as to how to proceed, when you have
>been added to the list.  List "co-owners" are Jeff Jones and myself. The
>traffic on CARE is a lot less than the main list. if that's a consideration.
>Welcome aboard!  Questions? email me or Jeff:
>        Camilla Flintermann <[log in to unmask]>
>        Jeff Jones <[log in to unmask]>
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 14:02:35 -0500
>From:    Camilla Flintermann <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>Dear Ivan--I think some good points have been made in the responses
>you've received re: being VISIBLY GAY on Oprah.  Let me say that from
>what I know of your family situation and other experiences you've shared with
>me, I can fully understand your concern, which may seem to some to be
>unnecessarily"dramatic".  This is a very painful issue for you, and one you
>live with daily.  On the other hand, please take seriously what others have
>said about our group * agenda * should we actually end up on Oprah.  That
>would
>be to focus not on our private lives as gay/straight/Jewish/Catholic/Quaker/
>atheist/whatever people, but as PWPs and CGs for PWPs.  Nor would I expect
>that hetero-couples would be kissing on stage....I love my husband very
>deeply,
>but he'd die if I kissed him on TV!! ;-)  WhileI know that you feel a need
>to educate the world about the fact that gay and lesbians folks exist in
>large
>numbers in the population--and even have PD!--that, I believe, would NOT be
>the PURPOSE of being on Oprah, and the fact that you were gay would be
>incidental to the fact that you are a PWP.  So my reaction, honestly, is
>there shouldn't be any secret to your gayness, and if your CG (male) was
>there, no problem, but neither should therebe an emphasis on that aspect of
>your relationship, which would, unfortunately in our society, shift the
>focus of the discussion away from the reason we would be there--PD.
>
>Camilla Flintermann, CG for Peter, 78/7, Oxford,Ohio
>[log in to unmask]
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>"Ask me about the CARE list for PD caregivers!"
>*   *   *   *   *   *   *   *   *   *   *   *   *   *
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 09:23:24 -0500
>From:    Wanda Banks <[log in to unmask]>
>Subject: [Fwd: new PWP-nauseated]
>
>This is a multi-part message in MIME format.
>
>--------------37092A9A2FA0
>Content-Type: text/plain; charset=us-ascii
>Content-Transfer-Encoding: 7bit
>
>Gail Vass [log in to unmask]
>
>--------------37092A9A2FA0
>Content-Type: message/rfc822
>Content-Transfer-Encoding: 7bit
>Content-Disposition: inline
>
>X-Mozilla-Status: 0001
>Message-ID: <[log in to unmask]>
>Date: Sun, 23 Feb 1997 12:59:00 +0000
>From: Wanda Banks <[log in to unmask]>
>Reply-To: [log in to unmask]
>X-Mailer: Mozilla 2.02 (Macintosh; I; 68K)
>MIME-Version: 1.0
>To:
>        Multiple recipients of list PARKINSN <[log in to unmask]>
>CC: [log in to unmask]
>Subject: new PWP-nauseated
>Content-Type: text/plain; charset=us-ascii
>Content-Transfer-Encoding: 7bit
>
>thanks everyone for all the help from all over the world! I'm on!
>
>I am new to the list, this is my first note. My sister (48yo) is a newly
>diagnosed PWP who saw her neurologist yesterday (FRI) for increasing
>difficulty writing. She is on Eldepryl twice a day with little
>improvement in rigidity.
>
>My sister agreed to a trial on Sinemet CR25/100 twice a day for two
>weeks to serve as a trial to see if her handwriting would improve and to
>confirm that she really has PD.
>
>Her doctor said to take the Sinemet CR25/100 with meals for 2 days and
>if not nauseated on Sat. or Sun., then take Sinemet 1/2 hour before
>meals from then on and return in 2 weeks to eval.
>
>She took the first dose at 9am with a big breakfast and by 11:30am she
>was very nauseated and by lunchtime today she was too nauseated to even
>eat lunch...Question..Should she stop Sinemet for the weekend and call
>Dr. on Mon. or should she stick it out & take Sinemet no matter how sick
>it makes her? Does the nausea wear off after awhile? Are there tricks to
>decrease the nausea? Now she's concerned that she'll be someone that
>won't be able to tolerate Sinemet in the future.
>
>Thanks, prompt advice would be appreciated.
>
>Gail Vass      [log in to unmask]
>
>
>--------------37092A9A2FA0--
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 04:31:08 -0500
>From:    "E. Jack Savely" <[log in to unmask]>
>Subject: Re: GAY PWP's are EXCLUDED!
>
>        Ivan:
>
>        I hope with your considering the points made in the
>        messages sent by
>                Barbara Mallut
>                Jeremy Browne
>                Lisa Crumrine
>                Maggie Heeger
>                Lena Holmes
>        you will finally understand that your being gay isn't
>        a big deal to the members of this list. Not that we
>        agree/disagree with homosexuality but that this isn't
>        the forum to try to win personal acceptance by promoting
>        your sexual preferences.
>
>        I believe strongly that a prominent display of homosexuality
>        on the Oprah show would be much the same as bringing up
>        and expounding on the topic of fetal tissue research. Either
>        topic might sell the show but would severely damage the
>        cause of getting additional Parkinson's research proponents
>        to help further the cause of funding appropriate research
>        projects.
>
>        Please don't feel you need to nationally televise your
>        sexual preferences during a show that would be designed
>        to give an insight into Parkinson's Disease. If you want
>        to gain national attention via TV for that purpose, you
>        might think about attending an interview show where the
>        topic is homosexuality and proudly stand up and declare
>        to the world that you have Parkinson's Disease in
>        common with 1.5 million others and we need a CURE not
>        words.
>
>        Best wishes........Jack
>
>
>***********************************************************
>E. Jack Savely    [log in to unmask]    Topeka, Kansas
>CG - Jeannette 58 - 20              Starliter on Chat
>***********************************************************
>KANSAS - 'THE WHEAT STATE' HOME OF THE SUNFLOWER AND 'TOTO'
>Ad Astra per Aspera  -  'To the Stars through Difficulty'
>***********************************************************
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 14:48:29 -0500
>From:    Arthur Hirsch <[log in to unmask]>
>Subject: GAY PWP's are INCLUDED
>
>Our efforts are aimed at getting more research effort into the fight against
>Parkinson's Disease as soon as possible, so that we will all benefit from
>the results sooner.  When progress is made, it will benefit all of us,
>whether gay or straight, black or white, rich or poor, male or female, young
>or old.  We all are included.
>
>While I sympathize with the desire of all groups, including the gay
>community, to be a visible part of the effort to speed additions to the
>research effort - and by visible I include the Oprah show that we have been
>discussing - let us not lose sight of OUR objective - fighting Parkinson's.
>
>In particular, Ivan Suzman has a wonderful story to tell.  For what I trust
>is the majority of people, those without bias against gays, his story is
>appropriate and persuasive.  But if the net effect of his story is to arouse
>the intolerant minority opposition against us, then perhaps he would not be
>a good showpiece.  We have already seen what a minority can do - look at
>what happened to the Udall Bill last year.
>
>I'm not one who can make the call on this - but if Ivan or any other gays
>would be excluded as spokespersons, it is because they are first included in
>the aims of the Parkinson's community.
>
>
>Art Hirsch
>[log in to unmask]
>Lewisville, TX
>Home of the Fighting Farmers
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 14:38:54 -0500
>From:    Joao Paulo Carvalho <[log in to unmask]>
>Subject: HUMOR
>
>This is for a weekend more ligth... :-)
>
>DEDICATION
>
>The Dallas Cowboys football fans are known for their dedication to the
>sport and for their attendance at all games in Dallas.  The story goes
>like this.
>
>While attending a Dallas game a Fan high in the cheap seats noticed
>another Fan seated on the 50-yard line expensive seats.     seat next to
>him was empty.
>
>At half time during  intervalo,  Fan #1approached the man in the rich
>seat and asked him why the seat was empty.   Fan #2 said that it belong
>to his wife, but she had died.
>
>When Fan #1 asked why he didn't give it to one of his friends or
>relatives, Fan #2 answered,  "they are all at the funeral"!!!!
>
>That's dedication and commitment!!
>
>
>--
>   +----| Joao Paulo de Carvalho   |------ +
>   |         [log in to unmask]     |
>   +--------| Salvador-Bahia-Brazil |------+
>
>------------------------------
>
>Date:    Sun, 23 Feb 1997 13:54:53 -0500
>From:    "Charles T. Meyer" <[log in to unmask]>
>Subject: Re: wellbutron and PD
>
>Susan,
>
>My review of the data does not indicate a CONTRAINDICATION of
>Wellbutrin(bupropion) in PWP.  There are some cautions in the data
>though.  There is a question as to whether it may interact with Sinemet
>or Eldepryl although the data is far from solid.
>
>I have never give the drug to a PWP but it is a good antidepressant and
>if I had a patient who I thought might benefit from the drug more than
>another medication,  I would do it with extreme caution- low
>starting dose and frequent contact.
>
>
>Charlie
>--
>**********************************************************
>CHARLES T. MEYER, M.D.  Age 52 /7 yrs
>MADISON, WISCONSIN
>[log in to unmask]
>**********************************************************
>
>------------------------------
>
>End of PARKINSN Digest - 23 Feb 1997 - Special issue
>****************************************************
>