Please ignore that last message--IAt 08:55 PM 7/24/97 -0400, you wrote:
>There are 26 messages totalling 915 lines in this issue.
>
>Topics in this special issue:
>
>  1. what to say (8)
>  2. FW: Mohammed Ali
>  3. my mum
>  4. unwanted changes -Reply (2)
>  5. YAPP-meet
>  6. (Marling) unwanted changes
>  7. The nights are not what they used to be. (2)
>  8. Gender
>  9. Sv: what to say
> 10. Location of dopamine receptors
> 11. PD jokes
> 12. TEST
> 13. all of you
> 14. Permax Experiences - Phil Gesotti (2)
> 15. Breathing difficulties
> 16. Head problems and questions
>
>----------------------------------------------------------------------
>
>Date:    Thu, 24 Jul 1997 14:47:35 -0400
>From:    Sue Maltais <[log in to unmask]>
>Subject: Re: what to say
>
>In a message dated 97-07-24 14:31:33 EDT, [log in to unmask]
>([log in to unmask]) writes:
>
><< i have been crying for last 2hrs i don't undarstand some of the problen
> some pmp are talking about. only got 2/1/2hr sleep last night. even i got
> bed i can change. i am gettin afraid to post any thing.as i might some one
> out there. not sure what i am talking about now. my legs hurt. falling=
 down
> all moring . how can i help ypu when i can't help my self. i need the net
> now bad. i for got my grils name today. gusse i will close. sorry tobother
> any one. I.Y.Q. don      [log in to unmask] com  72/25 >>
>
>Hang in there Don...we all love you.  Keep posting, I look forward to=
 hearing
>about your days and what you've been doing.
>
>Sue, daughter of Rocky
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 14:48:30 -0400
>From:    "Tebay, Wendy M (MSMAIL)" <[log in to unmask]>
>Subject: FW: Mohammed Ali
>
>_____________________________________
>__________________________________________
>From: Natalie Kontakos on Wed, Jul 23, 1997 3:22 PM
>Subject: Re: Mohammed Ali
>To: Tebay, Wendy M
>
>Hi Wendy,
>
>There is a gene-environment interaction with Alzheimer's disease.
>Recent
>studies have found that individuals with the Apolipoprotein E e4 gene
>who have
>had head trauma have a much higher risk of Alzheimer's diseae than
>those
>without the gene who have had head trauma. I think that a certain
>proportion of
>boxers may have ApoE e4 but I don't think that this frequency is
>higher in
>boxers (ie. I don't think that a gene like ApoEe4 predisposes you to
>box).
>Whether or not there is a similar relationship with Parkinson's ???
>(ApoEe4 has
>consistently shown to be unrelated to PD but an interaction between
>smoking and
>the MAOB gene has been reported)
>
>Natalie Kontakos
>
>Feel free to forward this to the list. I have trouble posting things
>to
>everyone and can only respond to individuals.
>
>
>
>
>
>Wendy.M.Tebay @ LMCO.COM ("Tebay, Wendy M (MSMAIL)")
>07/22/97 07:41 PM
>
>To: PARKINSN @ listserv.utoronto.ca (Multiple recipients of list
>PARKINSN) @
>INET
>cc:  (bcc: Natalie Kontakos)
>Subject: Re: Mohammed Ali
>
>From: Tebay, Wendy M on Tue, Jul 22, 1997 5:40 PM
>Subject: Re: Mohammed Ali
>To: PD Listserv Postings
>
>There was an article in the Denver Post recently, that talked about
>the possibility that some boxers may in fact have a gene that
>predisposes them to getting diseases like pd and other neurological
>damage from head trauma.  That would then explain why some boxers end
>up with pd or similar, and some don't
>
>Wendy Tebay
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 14:46:58 -0400
>From:    Russell Ahlstrom <[log in to unmask]>
>Subject: Re: what to say
>
>At 12:55 PM 7/24/97 -0400, you wrote:
>> i have been crying for last 2hrs i don't undarstand some of the problen
>>some pmp are talking about. only got 2/1/2hr sleep last night. even i got
>>bed i can change. i am gettin afraid to post any thing.as i might some one
>>out there. not sure what i am talking about now. my legs hurt. falling=
 down
>>all moring . how can i help ypu when i can't help my self. i need the net
>>now bad. i for got my grils name today. gusse i will close. sorry tobother
>>any one. I.Y.Q. don      [log in to unmask] com  72/25
>
>---------------------------------------------------------------------------=
-
>---------------------------------------------------------------------------=
-
>-------DDon,
> There is nothing wrong with crying,.  A good cry never hurt anyone. You
>have taken one giant step buy being on this list.  Just because you don't
>understand something doesn't make you any less of a person and believe me
>when I say none of us understand this disease completly. Just take one day
>at a time. Try to take nap for about an hour and try to relax.  This isn't
>something new !  All of have gone through this at one time or another and
>more than likely will again.
>Please Email back as Ianm very concered about you.  I will be here all day=
 !
>Hang in there buddy We will all see you through  this and tomorrow will be=
 a
>brighter day.
>
>your friend,
>
>Russ Ahlstrom          [log in to unmask] >
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 14:03:17 -0400
>From:    Bernard JOLY <[log in to unmask]>
>Subject: Re: what to say
>
>What to say ? Exactly what you said, and whatever you will feel or suffer=
 or
>complain about. We are about 1500 on this list who care for you and will be
>happy to help you. Don't worry if you mispell some words or if you cannot
>return the help : what we do for you now, we will get it  from others.
>
>My tiny contribution will be : try and find something positive happened to=
 you
>in the last few months, and tell us.
>
>Take care
>
>Bernard JOLY (64/8)
>[log in to unmask]
>
>-----Message d'origine-----
>De:     Parkinson's Information Exchange  =C0 la place de=
 [log in to unmask]
>Date:   jeudi 24 juillet 1997 17.55
>=C0:      Multiple recipients of list PARKINSN
>Objet:  what to say
>
> i have been crying for last 2hrs i don't undarstand some of the problen
>some pmp are talking about. only got 2/1/2hr sleep last night. even i got
>bed i can change. i am gettin afraid to post any thing.as i might some one
>out there. not sure what i am talking about now. my legs hurt. falling down
>all moring . how can i help ypu when i can't help my self. i need the net
>now bad. i for got my grils name today. gusse i will close. sorry tobother
>any one. I.Y.Q. don      [log in to unmask] com  72/25
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 14:56:21 -0400
>From:    Bernard JOLY <[log in to unmask]>
>Subject: Re: my mum
>
>Diane,
>
>My personal experience with Sinemet is : the effect of a change become=
 stable
>only after some weeks. The effect after a few days means nothing.
>
>The answer to your request for help is sending a message to listserv with
>"nomail" in the body.
>
>Your name sounds French, and there is a Jean-Pierre Lucas on my list. A=
 cousin
>?
>
>Regards
>
>Bernard JOLY
>[log in to unmask]
>
>
>
>
>-----Message d'origine-----
>De:     Parkinson's Information Exchange  =C0 la place de Diane Lucas
>Date:   jeudi 24 juillet 1997 19.06
>=C0:      Multiple recipients of list PARKINSN
>Objet:  Re: my mum
>
>Can anyone help?
>
>We haved worked out that my Mum suffers from Dyskenisia at the end of the=
 day
>having had too much Sinnemet.
>
>It was suggested by some of you and her doctor that she cut down. So she
>started to take a half for the last two doses instead of one whole one.
>
>She has been doing this for a few days and still getting the dyskenesia and
>sometimes the tablets do not work at all and she has no mobility.
>
>I would appreciate any help
>
>Thank You
>
>Diane
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 16:20:09 -0400
>From:    Stephan Schwartz <[log in to unmask]>
>Subject: Re: unwanted changes -Reply
>
>Hi Marlene:
>You wrote:
>>>> Marling McReynolds <[log in to unmask]>
>07/24/97 10:23am >>>
>>>I can empathize with your trouble.  I, too, must be in just
>>>the right position to sleep, and even when I find it I know
>>>that within 2 to 3 hours I will be awake again. Last night I
>>>went to bed at 12:30am(today actually), took at least
>>>30min to go to sleep and was up at 3:30am.  I went back
>>>to bed at 4:30am and was awake until after 5.  Then I got
>>>up at 6:30 and stayed up.  So, maybe I got almost 4
>>>hours of sleep, in pieces.  This was a restful night.  Many
>>>nights it is much worse.
>>>Yesterday my son and I went to the movies. I sat in the
>>>theatre for the 2 hours of the movie.  I am glad the movie
>>>was good.  At the end of it, I started to stand up.  My legs
>>>went into a dystonia mode.  My left leg would not
>>>straighten to let me stand and my right foot was doing the
>>>toe/heel curl.  My son was so good to me.  He took hold
>>>and helped me get to the car.  While driving home I had
>>>tremors, dystonia, and difficulty driving.  My son said he
>>>knows now that he must get a license and be my driver.
>>>Changes!  No more theatre movies.  Limited driving.  No
>>>more long walks along the river (climbing over the rocks).
>>>No more good, deep, sound sleeps.  No more days
>>>without pain and/or discomfort.
>>>I am so glad for the computer, the net, and all of you for
>>>friends.  Thank you for being there.<<
>Whew!  A rough 24 hours!  Typical or atypical??  Did you
>miss a scheduled med?
>     I find that when I do not get at least 5-6 hours
>uninterrupted sleep, I need to take a nap that day or the
>next.  If I anticipate difficulty with going to sleep I try my
>"white noise" - a tape of ocean sounds, and I adjust the
>temperature in the bedroom to colder.
>     When I expect to be sitting for more than 30-40 minutes
>at a time (restaurant, meeting, movie, driving) I try to do
>contraction and relaxation exercising in place.  Flex my arms
>and legs, roll my head, squeeze my buttocks, etc.  That
>helps to alleviate cramps.  Or just get up and go to the
>bathroom or walk around in the lobby.
>     Driving is another whole kettle of fish!  Tell your son, little
>Marling, Jr. to hurry-up and get his driver's license . . . he's
>probably 25 years old anyway . . . I thought California gave
>the license away in Cracker-Jacks boxes!
>Good luck.  Stephan 53/7
>
>------------------------------
>
>Date:    Fri, 25 Jul 1997 01:31:43 -0400
>From:    Benedicte BOUTET <[log in to unmask]>
>Subject: Re: YAPP-meet
>
>Nigel Cockle wrote:
>>
>> Does anybody know the day rate for the YAPP-meet, 5, 6 & 7th of September=
 in
>> Denmark?
>>
>> Need to know immediately, appreciate your input.
>> --------------------------------------------------------------
>> E-mail     [log in to unmask]
>> Mail       59 Norley Road, Cuddington, Northwich, CW8 2JY, UK
>> Telephone  (44) 1606 882150
>> --------------------------------------------------------------
>Hello
>
>The Yapmeet in Billund (Denmark) is from Friday 5th September 14.00 p.m
>to Sunday 7th September 13.00 p.m
>
>[log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 16:34:37 -0400
>From:    Dick Swindler <[log in to unmask]>
>Subject: Re: what to say
>
>Don -
>
>Hang in there.  We've all had our moments of crying too, I'm sure.  Your
>positive, can-do attitude is a real boost for all of us.  You remind us to
>keep trying and keep working.  We think you're a pretty impressive guy!
> We're all here for you.
>
>Margie        [log in to unmask]    IYQ too
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 16:05:14 -0400
>From:    Joao Paulo Carvalho <[log in to unmask]>
>Subject: Re: what to say
>
>[log in to unmask] wrote:
>
>>  i have been crying for last 2hrs i don't undarstand some of the
>> problen
>> some pmp are talking about. only got 2/1/2hr sleep last night. even i
>> got
>> bed i can change. i am gettin afraid to post any thing.as i might some
>> one
>> out there. not sure what i am talking about now. my legs hurt. falling
>> down
>> all moring . how can i help ypu when i can't help my self. i need the
>> net
>> now bad. i for got my grils name today. gusse i will close. sorry
>> tobother
>> any one. I.Y.Q. don      [log in to unmask] com  72/25
>
> Common old buddy....we are with you.Hold on,remember tomorrow is
>another day.
>Say it fast I.Y.Q.
>
>Best wishes,
>
>--
>   +----| Joao Paulo de Carvalho   |------ +
>   |         [log in to unmask]     |
>   +--------| Salvador-Bahia-Brazil |------+
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 15:44:21 -0400
>From:    Joao Paulo Carvalho <[log in to unmask]>
>Subject: Re: (Marling) unwanted changes
>
>Marling McReynolds wrote:
>
>> No more theatre movies.  Limited driving.  No more long walks along
>> the river
>> (climbing over the rocks).  No more good, deep, sound sleeps.  No more
>> days
>> without pain and/or discomfort.
>
>Sorry about that Marling.
>
>> I am so glad for the computer, the net, and all of you for friends.
>> Thank you
>> for being there.
>
>  And we thank you for you participation in it.  :-))
>
>Best wishes,
>
>
>   +----| Joao Paulo de Carvalho   |------ +
>   |         [log in to unmask]     |
>   +--------| Salvador-Bahia-Brazil |------+
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 17:14:50 -0400
>From:    Dick Swindler <[log in to unmask]>
>Subject: Re: unwanted changes -Reply
>
>Dear Marling -
>
>You wrote:
>
>>>Changes!  No more theatre movies.  Limited driving.  No
>>>>more long walks along the river (climbing over the rocks).
>>>>No more good, deep, sound sleeps.  No more days
>>>>without pain and/or discomfort.
>
>I'm sure "no more" of all the things you enjoy is how it seems to you right
>now.  However,  there'll be good days and bad days, good hours and bad=
 hours,
>as we all know when we're feeling better physically.  It's just hard to
>maintain perspective when so many bad things happen in one day.
>
>I've said this before on the net, but I'll say it again:  I've decided that
>PD is a series of losses, and we're entitled to grieve for each loss as if
>it's a death.  So I'm not about to tell you that you shouldn't mourn the
>losses as they occur.  But I do want to say that some of the abilities Dick
>and I thought were gone forever have reappeared with a change in=
 medication,
>or surgery, or even a reduction in stress.  There are other losses that we
>now consider permanent, such as Dick's ability to jog.  We're not declaring
>at this point that he can no longer drive on the highway or in heavy=
 traffic,
>but for the time being we've decided it's best for him to avoid it.
> Permanent?  Who knows.  But if it is, it's easier to deal with if we don't
>officially "bury" it yet.
>
>Here's hoping that some of the "losses" you think you're seeing are not
>permanent, but temporary fluctuations in the disease.  Of the losses that=
 may
>truly be permanent, we join with you in grieving for them, knowing that=
 your
>indominitable spirit will survive these losses and get you through.
>
>I echo your comment, "Thank goodness for the net.:
>
>Warmly, Margie Swindler     cg for Dick, 52/15        [log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 17:31:30 -0400
>From:    Nancy D Mullen <[log in to unmask]>
>Subject: Re: The nights are not what they used to be.
>
>Reply to message from [log in to unmask] of Thu, 24 Jul
>Dear wp
>Hi,
>It will be Ok.wee u oc chat tomorrow.
>
>NancyM. ds401
>>
>>I've never really hated any thing, until now.
>>If you like spending every moment by the clock
>>I suppose you could say my days are acceptable.
>>No snacks because I cannot afford the off time.
>>No milk products for the same reason.
>>The time I spend at home with my wife is off time
>>because I have to be on at work.
>>But the nights are becoming  a living nightmare.
>>When I sleep the dreams are vivid. Not scary, but
>>very real. More and more, however, I don't sleep.
>>Sometimes sleep doesn't come because I'm not sleepy.
>>But usually I don't because I cannot get comfortable.
>>I can no longer roll over by myself unless the sinemet is working.
>>I guess I need to up the amount I'm taking at night because
>>the main reason I can't sleep is the tremor. If I get in just the=3D20
>>right position I can relax enough to stop the shaking and fall asleep.
>>But getting into that position without help is impossible.
>>Have you ever tried  to describe to someone the position you
>>need to be in to fall asleep? Remember, you cannot get there yourself,
>>you need help. I can manage to roll over once during the night because
>>the meds are usually working. People have suggested a muscle
>>relaxant. The problem is that I also have Spinal Muscular Atrophy.
>>My lungs are already week and I don't want to think what a relaxant might=
=3D
>>=3D20
>>do to them.
>>OK, so I'm complaining. I've got to have some way to ease the stress whil=
=3D
>>e
>>I wait for the extra meds to work. I can tell when it's time for bed when
>>I no longer have to work to remain upright while I type.
>>Well, it's time to try again=3D85=3D85=3D85.
>>
>>
>>Marvin
>>
>>
>
>--
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 17:36:55 -0400
>From:    cln <[log in to unmask]>
>Subject: Gender
>
>On Thu, 24 Jul 1997, Russell Ahlstrom wrote:
>
>>Most of this material is original, but fellow PWP's friends, and my
>brother, who has an equally wierd sense of humor, have contributed.
>
>(The sound of plumbing flushing here)  Your friend John must be striving
>for the "dirty old man of the year" award.
>
>>"He also suggested I might be popular as a gynecologist."
>
>This isn't humor...this is repulsive syntax by a male about women.  The
>kind of stuff Andrew Dice Clay used in his standup comedy routines.
>His short-lived career was built upon disgusting one-liners about women.
>Haven't heard about him lately though. (He probably drowned in someone's
>bathroom bowl.)
>
>Clara Nistler
>Gene Nistler 63/10
>___________________________________________________________________________=
____
>[log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 16:14:10 -0400
>From:    Sonia Nielsen <[log in to unmask]>
>Subject: Sv: what to say
>
>----------
>> Fra: [log in to unmask] <[log in to unmask]>
>> Til: Multiple recipients of list PARKINSN <[log in to unmask]>
>> Emne: what to say
>> Dato: 24. juli 1997 18:55
>>
>>  i have been crying for last 2hrs i don't undarstand some of the problen
>> some pmp are talking about. only got 2/1/2hr sleep last night. even i got
>> bed i can change. i am gettin afraid to post any thing.as i might some
>one
>> out there. not sure what i am talking about now. my legs hurt. falling
>down
>> all moring . how can i help ypu when i can't help my self. i need the net
>> now bad. i for got my grils name today. gusse i will close. sorry
>tobother
>> any one. I.Y.Q. don      [log in to unmask] com  72/25
>
>Dear Don,
>We all need our list. Today I`m crying with you, tomorrow I hope I`m
>laughing with you. But -my dear friend - sure you are never going to bother
>me :-)) (big smile).
>It`s a pleasure to know you and Vivian. I hope you very soon are feeling
>well again.
>
>Best wishes from you friend
>Sonia
>Denmark
>
>
>NEVER GIVE UP
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 17:43:56 -0400
>From:    Nancy D Mullen <[log in to unmask]>
>Subject: Re: what to say
>
>Reply to message from [log in to unmask] of Thu, 24 Jul
>>
>DON,
>
>PLEASE:) IT IS OK.  REALLY. JUST REST . EVERYTHING IS OK
>i CRY TOO. IT IS FRUSTRATING SOMETIMES. MY LEGS HURT TOO.  I EVEN HAD TO GO
>BACK INTO THE HOSPITAL LAST WEEK.YOU NEVER EVER BOTHER ME OR ANYONE
>ON THIS LIST. iF I COULD I WOULF GET INTO MY CAR AND DRIVE OVER AND TALK TO
>YOU.  DON I GUESS I AM TRYING TO TELL YOU THAT YOU ARE HELPING ME ALOT!!!!
>IF YOU DID NOT WRITE THESE POSTS I WOULD BE SORTOF SAD. I LOOK FORWARD
>TO THEM EVERYDAY:))))
>
>yOUR DAUGHTERS UNDERSTAND THAT ALL OF THIS IS PART OF YOUR DISEASE NOT YOU
THEIR
>FATHER. OH NO THEY WILL NEVER THINK BADLY OF YOU EVEN F U FORGET THEIR=
 NAMES-
>YOU STILL KNOW DEEP IN YOUR HEART THAT THEY ARE YOUR LITTLE GIRLS.
>i KNOW THAT.
>
>
>SOOOOOOOOOOOOOOOOOOOO
>
>COME ON AND SMILE PLEASE:))))))))))
>
>
>
>NANCY MULLEN [log in to unmask]
>>
> i have been crying for last 2hrs i don't undarstand some of the problen
>>some pmp are talking about. only got 2/1/2hr sleep last night. even i got
>>bed i can change. i am gettin afraid to post any thing.as i might some one
>>out there. not sure what i am talking about now. my legs hurt. falling=
 down
>>all moring . how can i help ypu when i can't help my self. i need the net
>>now bad. i for got my grils name today. gusse i will close. sorry tobother
>>any one. I.Y.Q. don      [log in to unmask] com  72/25
>>
>>
>
>--
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 18:01:58 -0400
>From:    Jacob Drollinger <[log in to unmask]>
>Subject: Location of dopamine receptors
>
>Does anyone know if the specific dopamine receptors i.e. D1-D5 are in any
>specific area in the basal ganglia or if they are simply intermingled with
>eachother. I mean, are the D1 receptors in the internal globus pallidus, or
>the D4 receptors in the caudate head. I don't know, these are presented=
 just
>as examples. Hope someone can understand and answer my question.
>
>Jacob Drollinger (26,'88)
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 18:16:03 -0400
>From:    Sue Whitmore <[log in to unmask]>
>Subject: Re: what to say
>
>Don,
>
>Sorry you had a bad day.  Just try to think real hard and I am sure you can
>find at least one good thing that happened today.  Then concentrat on that.
> I know from experience that it is hard to be positive all of the time, but
>it truely does help.  Know that there are many of us out here who share the
>same experiences and fears as you and we are here to support each other in
>times like this.  Try to keep smiling.
>Sue W.  45/1.5
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 19:58:56 -0400
>From:    "Tebay, Wendy M (MSMAIL)" <[log in to unmask]>
>Subject: PD jokes
>
>From: Tebay, Wendy M on Thu, Jul 24, 1997 5:58 PM
>Subject: PD jokes
>To: PD Listserv Postings
>
>Russ Ahlstrom brought up the subject of PD jokes.  I don't have any
>specifically, but sometimes when I'm having trouble walking due to the
>PD, I can't help but think of the Monty Python sketch about the
>'Ministry of Funny Walks.'  It's a satire of government beuracracy (I
>know that's not spelled right), where this guy goes to this government
>ministry, hoping to get a grant to further develop this funny walk
>that he's come up with.  Too bad this agency doesn't really exist, or
>we could all be rich!
>
>Wendy Tebay
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:15:39 -0400
>From:    Mary Ulmer <[log in to unmask]>
>Subject: Re: The nights are not what they used to be.
>
>Marvin
>A ND spoke at our PD support mgt-I asked him about Mel's vivid dreams.  He
>suggested Mel leave off his second Elderpryl at noon.  He felt it=
 contributed
>to the vivid dreams.  He said Mel only needed one anyway.
>He also suggested if a PDer wakes up at night and cannot sleep, it is=
 because
>of lack of mobility and the ability to move-he suggested 1/2 of a 50/200 CR
>at that time.
>Hope your nights get better and I cannot imagine taking meds around one's
>work as the CR carries Mel from one dose to another.
>KEEP THE FAITH
>Mary CG for Mel 76/11 [log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:12:56 -0400
>From:    ERVIN_MCCARTHY <[log in to unmask]>
>Subject: TEST
>
>TESTING
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:36:17 -0400
>From:    Mary Ulmer <[log in to unmask]>
>Subject: Re: what to say
>
>Don,
>Please don't cry-it'll make us all sad-you are one of our very FAVORITE=
 Pder.
>I don't have PD and I can't remember names.  Chalk it up to a 'bad day' and
>there will be some good days out there.
>Mary CG for Mel 76/11
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:39:39 -0400
>From:    LISA CRUMRINE <[log in to unmask]>
>Subject: all of you
>
>I must say hello and send my love out to you all, This list has made
>such a difference in my life.   My heart feels for all you!  I Have been
>lurking for a while, was active when i fist came on,  and yes, I too get
>a little perturbed wehn i find 120 msg's waiting for me.  But, I know
>how to use the delete button. Yes, it still takes time to wade thru it
>all, but... I love you guys, your're so wonderful and supportive and
>helpful.   I also have the toe curl, the restlessness, the sleep
>disorders, the shaking hands, the jerky movements, but i have a pretty
>good life, regardless.  You make your own choices.  You have the power
>within to make it better.
>
>Marling,hang in there babe, don, you are doing great, and all the rest.
>Bernard from france you write such beautiful pieces, and the other don
>and barb, and that canadian guy, eh?  we are so lucky we have each
>other!
>
>thank you and I LOVE YOU ALL!
>
>Hang in there, yes sometimes it really sucks.  Take a moment, look up at
>the sky, take a deep breath, look at the flowers and beauty around us.
>
>Keeping a positive attitude creates positive surroundings.  enjoy your
>world, And take time to stop and smell the flowers, or at least remember
>what they used to smell like...
>
>with love to y'all
>lisa in Paradise (St John, US Virgin Islands)
>[log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 18:06:58 -0400
>From:    Brian Collins <[log in to unmask]>
>Subject: Re: Permax Experiences - Phil Gesotti
>
>On Wed 16 Jul, Phil Gesotti wrote:
>> I posted a note last week reqesting experiences with Permax, but did not
>> get much of a response. If you are using Permax, could you share your
experience?
>> Have you had any side effects?
>> Your age, how long you been using the drug and in what dosages?
>> What was the progression of dosage?
>>
>> Thanks.
>>
>>
>>
>
>Hello Phil, The following note is one that I wrote a few weeks ago: I am
>sending it in partial answer to your question.
>
>=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
>
>I have personal experience of Pergolide; I currently take 10 x 250 micro=
 gram
>tablets of Pergolide ( i.e. 2.5 mg). When I was taking a smaller quantity=
 of
>Pergolide, I did some sums to see if I could replace the levodopa with
>Pergolide. (At that time, the recommended max dosage of Pergolide was 3 mg=
 )
>I concluded that to replace all of the Dopamine would require much more=
 than
>the 3.0 mg max limit.  With further satisfactory experience, I gather that
>today's max recommended limit is up from 3mg to 4mg. but even this is not
>really enough to replace levodopa.
>
>As to the logic of replacing the entire intake of levodopa with Pergolide,=
 I
>do not consider it to be a good thing to do: levodopa (when converted into
>Dopamine) is the same chemically as the dopamine missing from the brain of
>a PWP. The Dopamine agonists are tailored to fit into the Dopamine=
 receptors,
>but otherwise they are not the same as dopamine. I would be worried that=
 there
>may be other subtle interactions which the agonist may not support.
>
>I have noted that when used in conjunction with levodopa, Pergolide seems=
 to
>'soften' the otherwise rather harsh, transition from 'off' to 'on' and vice
>versa. ( By harsh, I mean that sometimes I found adjacent muscles fighting
>each other during the transition - an extremely painful condition.
>
>Because of its relatively mild effect, I have found that the best way to=
 use
>Pergolide is to set up a system where you are taking  X gm of levodopa
>(Whatever you need) and 500 micro grammes of Pergolide. From this baseline,
>as you proceed downhill (as we all do ) you can just add a couple more
>Pergolide to your daily intake, to counter the deterioration. In this way,=
 I
>have worked my way from 2 x 250ug to 10 x 250 ug per day, which gives a=
 clear
>measure of my personal rate of descent.
>
>The exchange rate of Pergolide v levodopa, as it affected me, and based on=
 the
>first 1 mg of Pergolide (it may not be linear at higher dosages) is that
>1 mg per day of Pergolide can replace 17 mg per hour.  Note that I use=
 units
>mg per day for Pergolide and mg per hour for levodopa.)
>   To express that in a more easily understandable way, taking 4 x 250=
 micro
>grammes of Pergolide would enable you to reduce your intake of levodopa=
 from
>say 900 mg per day to about 700 mg per day. ( It is necessary to back-off=
 the
>levodopa otherwise over-dosing will result.) Also, whatever the hype about=
 D1
>D2 receptors is, I found that there was NO improvement in overall=
 'headroom'.
>That is to say that the window which I am aiming for is still the same size
>as before. Nevertheless, agonists are on balance worth having in=
 moderation.
>I wrote more than I intended, but I hope at least some of it may be useful.
>
>
>--
>Brian Collins  <[log in to unmask]>
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 18:00:56 -0400
>From:    Brian Collins <[log in to unmask]>
>Subject: Re: Permax Experiences - Phil Gesotti
>
>O
>>
>>
>Hello Phil, The following note is one that I wrote a few weeks ago: I am
>sending it in partial answer to your question.
>
>=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=
=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D=3D
>
>I have personal experience of Pergolide; I currently take 10 x 250 micro=
 gram
>tablets of Pergolide ( i.e. 2.5 mg). When I was taking a smaller quantity=
 of
>Pergolide, I did some sums to see if I could replace the levodopa with
>Pergolide. (At that time, the recommended max dosage of Pergolide was 3 mg=
 )
>I concluded that to replace all of the Dopamine would require much more=
 than
>the 3.0 mg max limit.  With further satisfactory experience, I gather that
>today's max recommended limit is up from 3mg to 4mg. but even this is not
>really enough to replace levodopa.
>
>As to the logic of replacing the entire intake of levodopa with Pergolide,=
 I
>do not consider it to be a good thing to do: levodopa (when converted into
>Dopamine) is the same chemically as the dopamine missing from the brain of
>a PWP. The Dopamine agonists are tailored to fit into the Dopamine=
 receptors,
>but otherwise they are not the same as dopamine. I would be worried that=
 there
>may be other subtle interactions which the agonist may not support.
>
>I have noted that when used in conjunction with levodopa, Pergolide seems=
 to
>'soften' the otherwise rather harsh, transition from 'off' to 'on' and vice
>versa. ( By harsh, I mean that sometimes I found adjacent muscles fighting
>each other during the transition - an extremely painful condition.
>
>Because of its relatively mild effect, I have found that the best way to=
 use
>Pergolide is to set up a system where you are taking  X gm of levodopa
>(Whatever you need) and 500 micro grammes of Pergolide. From this baseline,
>as you proceed downhill (as we all do ) you can just add a couple more
>Pergolide to your daily intake, to counter the deterioration. In this way,=
 I
>have worked my way from 2 x 250ug to 10 x 250 ug per day, which gives a=
 clear
>measure of my personal rate of descent.
>
>The exchange rate of Pergolide v levodopa, as it affected me, and based on=
 the
>first 1 mg of Pergolide (it may not be linear at higher dosages) is that
>1 mg per day of Pergolide can replace 17 mg per hour.  Note that I use=
 units
>mg per day for Pergolide and mg per hour for levodopa.)
>   To express that in a more easily understandable way, taking 4 x 250=
 micro
>grammes of Pergolide would enable you to reduce your intake of levodopa=
 from
>say 900 mg per day to about 700 mg per day. ( It is necessary to back-off=
 the
>levodopa otherwise over-dosing will result.) Also, whatever the hype about=
 D1
>D2 receptors is, I found that there was NO improvement in overall=
 'headroom'.
>That is to say that the window which I am aiming for is still the same size
>as before. Nevertheless, agonists are on balance worth having in=
 moderation.
>I wrote more than I intended, but I hope at least some of it may be useful.
>
>
>--
>Brian Collins  <[log in to unmask]>
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:46:36 -0400
>From:    Debbie White <[log in to unmask]>
>Subject: Breathing difficulties
>
>This is for Sue:
>After speaking to my mother about the breathing difficulties she had, she
>said that they disappeared once her Permax was decreased. She has gone back
>to full dosage again so far without problems.
>
>She describes her problems as a shortness of breath. Hope that helps. Good
>luck and stay well.
>
>
>
>
>Debbie White
>[log in to unmask]
>
>------------------------------
>
>Date:    Thu, 24 Jul 1997 20:53:48 -0400
>From:    Debbie White <[log in to unmask]>
>Subject: Head problems and questions
>
>Hillie wrote:>
>
>Hi everyone!
>>My father (75) has PD. His problem is his head. He says that the feeling
>is
>>very hard to describe - it is like something presses his head from
>outside.
>>The feeling is stronger in standing.
>>His  PD treatment started about year ago. Now he takes Madopar '125' HBS
>>twice a day.
>>        Is this feeling connected with PD? What to do?  If you know
>something
>>about that, please, write!
>>        Hille
>>
>Hille,
>
>For the first time since joining this list, I am receiving my mail
>remotely.
>My access to a phone (it's ALWAYS tied up here) is limited so I don't know
>how quickly I can get this out. However, I wanted to tell you that I
>described your father's problem to my mother and she (who in the past was
>unable to explain her head problems adequately) said, "Yes. That's what I
>felt."
>
>I posted questions about this myself awhile back. My mother (Joyce, 67/5
>months) is on Sinemet 25/100 4x/day, Permax .25 mg. 4x/day, and an
>antidepressant. She remembered that the head problems predated the
>medication, so we summed it up to PD. It was among her most bothersome
>feelings. She didn't notice a difference when standing or sitting -- it was
>always there. But she just told me that now that she thinks about it, she
>hasn't had the head problem and she thinks it disappeared around the time
>she started taking antidepressants (started about 1.5 weeks ago). At the
>time she started the antidepressant, other things happened (my father ended
>up in the hopital for a week for heart problems -- I am visiting them now)
>and she feels that dealing with that was so distracting that it might have
>in part contributed to the disappearance of the head symptoms.
>
>I'd like also to say that I was surprised she started on the
>antidepressant.
>She never seemed depressed to the point where medication would be necessary
>(having been a user of antidepressants in the past myself, I didn't
>recognize similar symptoms in my mother at all). However, when her doctor
>asked how things were mentally, she said she felt a bit stressed. All in
>all, I think the antidepressant was a good idea.
>
>Also, a few weeks ago I posted about my mother's breathing difficulties.
>Her
>doctor cut back on the Permax a bit, and since then she hasn't had the
>shortness of breath. She did, however, end up undermedicated and built up
>to
>the full Permax dose and is on it now without any difficulties.
>
>Finally, (I know this is long) two questions: (1) I know that a good
>reaction to Sinemet is almost part of the PD diagnostic tool kit. Is this
>true of agonist such as Permax, too? That is, if one reacts well to it,
>does
>that suggest that the disease is PD? (2) Being with my mother has made me
>aware of just how much her life revolves aorund drugs. She doesn't always
>sleep sucessfully and needs to wake up early anyway to take a drug for her
>bones that needs to go in 1 hour before eating or drinking (or the
>Sinemet).
>Sometimes she is exhausted at night but must stay up for that 10:30 p.m.
>dose of Permax. The other night she finally just took it at 9:30 (she had
>been at the hospital with my father, which was exhausting). I'm wondering
>how flexible you can be with Permax. I suggested going to bed early and
>then
>setting an alarm for 10:30, but she was afraid she's never get back to
>sleep. Any suggestions about this?
>
>Thanks in advance.
>
>(Don, don't stop saying anything. I find it all interesting and your patio
>updates gave me just the push I needed to get on my husband about some work
>that needs to get done around here!)
>
>Debbie White
>[log in to unmask]
>
>
>Debbie White
>[log in to unmask]
>
>------------------------------
>
>End of PARKINSN Digest - 24 Jul 1997 - Special issue
>****************************************************
>
>