Help!!!!! How do I call up one of the m A24/97 -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 >**************************************************** > >