>There are 15 messages totalling 1035 lines in this issue. > >Topics of the day: > >1. Post Pallid. Op Effects >2. Udall Letter Writing >3. vocal`cords >4. Estrogen Replacement Therapy and PD (5) >5. Shingles >6. Tax Help >7. a little humor >8. New Member (2) >9. <No subject given> >10. prozac again > >---------------------------------------------------------------------- > >Date: Sun, 14 Apr 1996 00:18:09 -0400 >From: [log in to unmask] >Subject: Re: Post Pallid. Op Effects > >A young man (30's) in our group (no E-mail) had Pallid at Emory and post op >his vocal cords collapsed. It took just a few days to return with no serious >damage. He has much improved, that is his posture is near normal and barely >any visible dyskenesia. Good luck > >------------------------------ > >Date: Sat, 13 Apr 1996 20:53:11 -0400 >From: [log in to unmask] >Subject: Udall Letter Writing > >Someone wrote me offering too write truckloads of letters. While >composing my reply my computer ate his address. Here's the reply. >Please E-Mail me again. > >Great to hear that kind of enthusiasm. If we could just get a few >more like you say in Florida or Chicago or North Carolina. > >At the top of your list to write should be your two Senators. Next on >your list should be your Congressman. Writing letters is good. A lot >of letters is great, but, I believe that the most effective method of >influencing legislators is a personal visit. If we could have one >person with Parkinson's meet with every Senator and Representative we >will easily pass this bill. We have a compelling case and when >presented personally the overwhelming majority of legislators >contacted have agreed to cosponsor. > >Next on the list is Senator Nancy Kassebaum of Kansas and those on >her Labor and Human Resources committee who are not currently >cosponsors (Ashcroft-MO, Jeffords-VT, DeWine-OH, Gorton-WA, >Coats-IN, Gregg-NH, Abraham-MI, Harkin-IA). Despite 29 Senators >cosponsoring this legislation, it remain stalled in this committee. > >The same is true in the House Commerce Subcommittee on Health and >the Environment, chaired by Congressman Mike Bilirakis of Florida, >where this bill languishes despite 109 cosponsors. > >Should this bill get out of the Subcommittee it requires approval of the >full Commerce Committee chaired by Congressman Bliley of Virginia. > >Finally, the Republican leadership (Senator Bob Dole and Speaker >Newt Gingerich) who will ultimately have great influence on whether >this bill is ever considered or passes. > >Keep your message simple try to limit our pitch to 3 items: 1) >PARKINSON'S IS A DEVASTATING ILLNESS - Although >treatment with medication is often effective in the early stages, these >medications lose their effectiveness resulting in incapacitating >stiffiness and loss of the ability to iniatiate movement. > >2) A CURE IS WITHIN OUR GRASP - Researchers describe >Parkinson's a the most easily cured neurological disorder - if >adequate research support is provided. Several major research >advances (neural cell transplantation, neural growth factors, and >genetic engineering of cells) leave Parkinson's poised on the brink of >a major breakthrough. > >3) THIS LEGISLATION IS COST EFFECTIVE - Congressional >testimony estimated the cost of Parkinson's Disease to exceed $26 >million per year. Even the most conservative estimate is a staggering >$6 billion per year. Expenditures of $100 million per year for five >years to save $26 billion per year is an investment any company in the >private sector would make without hesitation. > >------------------------------ > >Date: Sun, 14 Apr 1996 05:53:45 -0400 >From: John Morey <[log in to unmask]> >Subject: vocal`cords > >I am now on Sinemet, 25/100, half a pill, 3 x day, and Eldipril, 3 x wk. One >of the annoying side effects is my voice. Every afternoon I sound like I've >got the worst cold, bordering on laryingitis(sp?). Any suggestions? >Peace, >John > >------------------------------ > >Date: Sun, 14 Apr 1996 08:25:19 -0400 >From: [log in to unmask] >Subject: Re: Estrogen Replacement Therapy and PD > >Hello, > >I heard on the news yesterday that women who had taken estrogen had a 40% >less incidence of Alzheimers. This might relate to PD as some patients do >suffer dementia too and it is a neurological disease. However, isn't it true >there is a higher incidence in men of PD? Could estrogen have something to >do with protecting women against PD? > >Spring is here! I saw two robins looking for a place to build a nest >yesterday. > >Pam ([log in to unmask]) > >------------------------------ > >Date: Sun, 14 Apr 1996 08:56:00 -0400 >From: MS D J KIPP <[log in to unmask]> >Subject: Re: Estrogen Replacement Therapy and PD > >-- [ From: Donna Kipp * EMC.Ver #2.10P ] -- > >Pam,After seeing this article and observing generally younger women do >better then younger men with PD. I spoke with my neuro and asked him >if estrogen may be a factor and he agreed with the observation and >thought it was possible. I am planning on going on ERT in the next >month or so. I went on it a couple years ago and noticed it made my PD >symptoms worse. As usual this is an ambiguous situation....... Donna > >------------------------------ > >Date: Sun, 14 Apr 1996 11:48:32 -0400 >From: "Zippo Bilbrok 3.0e8" <[log in to unmask]> >Subject: Re: Shingles > >Shingles (or Herpes Zoster) is a viral disease that travels along >specific nerve lines, which is why the lesions frequently occur over >isolated sections of the body. The most common site for such infection >is usually directly under the rib cage, but facial lesions (over, and >sometimes involving, the eye) are also prevalent. > >The bottom line for all to remember is that this is an *infectious* >disease, and exposure to high viral loads (to those with open lesions) >can bring about infections in those who ordinarily wouldn't have gotten >sick. It is true that chicken pox virus (Herpes) remains in the body >after infection throughout life, and stress can exacerbate immergence >of the virus in the form of Shingles. > >The reason I am belaboring this point is because Herpes infections >(specifically Chicken Pox and Shingles) can be *deadly* to those who are >immune suppressed, specifically those on cancer chemotherapy (children >with Leukemias are at particularly high risk) and AIDS. > >Discussions about Shingles being caused by stress (stress = immune >suppression, which is true), often ignore the infectious nature of this >disease. >------- >Blessings >Mary Ann > >------------------------------ > >Date: Sun, 14 Apr 1996 10:59:30 -0400 >From: [log in to unmask] >Subject: Re: Estrogen Replacement Therapy and PD > >Its funny that this subject comes up again after more than a year. > >Chuck realized that my PD symptoms were greatly exagerated and exasperated >during the five days before my period and again for two days during >mid-cycle. We filmed this over a period of five months to make sure and >then submitted this to Dr. Stanley Fahn. >During our talk with him, he mentioned that he had a much older patient list >and noone else ever mentioned it to him. He did hear of this from >researchers in the U>K> He was not inclined to add any hormones to my meds. > >He reviewed the films with his staff and a few weeks later we got some phone >calls from another PD researcher in Chicago who told us she had seen the tape >and confirmed that there were pre-menapausel with the same indications in her >area. > >Thats the last we heard of it until seeing this thread but noone has brought >this matter up for discussion since. > >SHOW OF HANDS. DO ANY OF YOU PRE-MENAPAUSEL GALS SUFFER THE SAME MONTHLY >SYMPTOMS?? > >joyce > >------------------------------ > >Date: Sun, 14 Apr 1996 08:16:19 -0400 >From: [log in to unmask] >Subject: Tax Help > >I need some tax advice. In my last minute attempt to file I find I >may be subject to an underpayment penality. This is due to changes >in my witholding as a result of going on disability in Mar of 94. >The IRS states that this penality may be waived if it is the result >of going on disability and the following two conditions were met: >1)Reasonable cause for not making payment and 2) it was not willful. >I must submit a written request addressing these items and wondered >what wording should be used? Anyone on disability out there who has >faced this issue sucessfully? > >------------------------------ > >Date: Sun, 14 Apr 1996 15:57:53 -0400 >From: [log in to unmask] >Subject: a little humor > >About a week ago I heard on a radio newscast the >following description of a cow that is suffering from the >so-called "mad cow disease" which has been plaguing >Great Britain lately. > >"When standing still, the cow trembles all over and sways >back and forth. When it attmpts to walk the cow staggers. >The animal also drools excessively" > >I told my wife that it sounded like the cow has Parkinson's. >(on second thought, maybe I've had mad cow disease these last 9 or 10 years) > >Ben [log in to unmask] > >------------------------------ > >Date: Sun, 14 Apr 1996 18:45:52 -0400 >From: Kathie Tollifson <[log in to unmask]> >Subject: Re: Estrogen Replacement Therapy and PD > >>SHOW OF HANDS. DO ANY OF YOU PRE-MENAPAUSEL GALS SUFFER THE SAME MONTHLY >>SYMPTOMS?? >> >>joyce> > >Every month I swear that I've experienced a dreadful progression, I'll never >be the same again. Meds just don't work like they're supposed to or not at >all. You'd think I'd remember from month to month, but this short term >memory loss kicks in and I have to go through it all over again, like that >movie Groundhog Day but not funny. > >To John Morey re: his voice. Sing! That is the one thing every one marvels >at about me, my voice is very strong. Our local APDA has a Friday morning >sing group that is fun and run by a voice therapist, I sing in church for a >couple of hours a week and exercise those voice muscles. Use it- don't lose >it! > >Kathie Tollifson >[log in to unmask] > >------------------------------ > >Date: Sun, 14 Apr 1996 18:46:10 -0400 >From: "Kurt Deuschle (COM-M)" <[log in to unmask]> >Subject: New Member > >Hi! my name is Jeanne Deuschle and I am writing for my husband Kurt, who=20 >is 73yr. and has had PD for 12 yrs.. Although Kurt has many of the most=20 >common PD symptoms, tremor etc. they are relatively mild when compared to= >=20 >the significant problems he has with autonomic nervous system dysfunction= >=20 >(manifest by orthostatic hypotension and a neurogenic bladder) and=20 >cognitive changes (attributable primarily to years of sinemet and eldepryl)= >.. >Kurt is on 650mg. daily of sinemet and has been off eldrpryl for the past= >=20 >two years, He has been on a "heavy duty" neuroleptic(closapine) for the=20 >past year. This drug has significantly helped the cognitive problems but= >=20 > >has its own side effects(great drowsiness,lowers BP ,severe=20 >constipation). The drug also requires a weekly blood count. >We would love to hear from anyone who has experienced similar problems > > >= >=20 >= >=20 >= >=20 >= >=20 >= >=20 >= >=20 >= >=20 >= >=20 >= >=20 >=20 > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >AT&FE1L1V1&C1&D2S0=3D0S7=3D90 m mmAT&FE1L1V1&C1&D2S0=3D0S7=3D90 =FBs=DDd= >=E3 >=E6=FBAI=BAv=BF > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >and learn how others have coped=20 >. We are very optimistic and hope and pray for a "cure" before too long! > >It is a good feeling to know that there are others who are simpatico to=20 >our PD trials and tribulations > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >=20 > > > > > > > > > > > > > > > > > > > > > > > > >Hi! My name is Jeanne Deuschle, and I am writing for my husband Kurt >who is 73yr. and has had Parkinson's for 12 yrs. He is on 650mg. of=20 >Sinemet daily ..off deprenyl now. Although Kurt has some of the common >PD symptoms of tremor,etc. they are mild when compared to his more=20 >difficult problems... autonomic nervous system dysfunction (manifest by=20 >orthostatic hypotension and a neurogenic bladder) and cognitive changes. >His cognitive problems have developed over the past two years or so. Kurt= >=20 >is now on Closapine, a "heavy duty" neuroleptic drug. The drug has helped= >=20 >greatly...but has many side effects to deal with such as lowering=20 >BP,terrific drowsiness,and severe constipation. The cognitive problems=20 >are drug related..years of sinemet and eldepryl! We continue to "hang in=20 >there" and are hoping and praying for a cure. We would love to hear from=20 >anyone who has had experience with these kinds of problems and learn how=20 >they are coping. > >It is wonderful to have a "simpatico" group of people to reach out to. > >Jeanne ([log in to unmask]) > >------------------------------ > >Date: Sun, 14 Apr 1996 21:00:12 -0400 >From: shalelou <[log in to unmask]> >Subject: <No subject given> > >this is a test >Evelyn Bails > >------------------------------ > >Date: Sun, 14 Apr 1996 21:54:05 -0400 >From: "J.R. Bruman" <[log in to unmask]> >Subject: Re: Estrogen Replacement Therapy and PD > >Joyce, I don't know if you saw my post on menstrual-related fluctuations >a few months ago. There was one report that Diamox dramatically reduced >the effect; maybe you could ask your neuro to look it up in the local >medical library, and see what he thinks: >Factor S; Movement Disorders 1993:8:240-241 >Cheers, Joe > > >J. R. Bruman (818) 789-3694 >3527 Cody Road >Sherman Oaks CA 91403 > > >On Sun, 14 Apr 1996 [log in to unmask] wrote: > >> Its funny that this subject comes up again after more than a year. >> >> Chuck realized that my PD symptoms were greatly exagerated and exasperated >> during the five days before my > >*** Press F5 to see the rest of this article ***