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At 00:00 3/10/96 -0400, you wrote: >There are 26 messages totalling 798 lines in this issue. > >Topics of the day: > > 1. Need Help getting Digest > 2. Height > 3. Off Day (2) > 4. Ropinole/Requip V Pergolide/Permax > 5. PD advocacy and drug companies (3) > 6. Biofeedback > 7. 10/100 vs 25/100 (2) > 8. CareGivers' List (fwd) (fwd) (fwd) > 9. Stature abd PWP > 10. RLS and Worms and SHIVERS, AND quakes, and shudders > 11. Off Day==bet it was a cloudy rainy day > 12. congress adjourns without udall House vote WHAT TO DO > 13. International support for Udall ? > 14. Introducing Myself > 15. Answer to your welcome (fwd) > 16. $32 Million for Parkinson's research???? (3) > 17. Off Day/Sinamet-deteriorate > 18. Found Money > 19. nurtrasweet (2) > >---------------------------------------------------------------------- > >Date: Wed, 2 Oct 1996 02:50:44 -0400 >From: "<Barbara > <Jensen> <[log in to unmask]>" <[log in to unmask]> >Subject: Need Help getting Digest > >Hello ! > >Need help to obtain Parkinsn Digest from listserv > >Please give me exact online instructions....I am a novice > >Thank you.....Barbara Jensen > >------------------------------ > >Date: Wed, 2 Oct 1996 03:47:22 -0400 >From: "H.J. Rolff" <[log in to unmask]> >Subject: Height > >Male age 44 PD diag 1990 hgt 6' 1", wgt 187lbs > >------------------------------ > >Date: Wed, 2 Oct 1996 06:40:52 -0400 >From: Frances Armstrong <[log in to unmask]> >Subject: Re: Off Day > >The question about an "off day" came just after I'd experienced the same >thing (though not on the same day, so we can't blame the stars or the >weather). Yesterday I was locked into rigidity no matter what I did. >Intake of food didn't seem to be a factor. I wondered about the pills >themselves -- is it possible that Sinemet can deteriorate significantly >if, for instance, exposed to heat in a car -- or to cold, for that matter? > >While I'm writing, on the matter of height, I and my two cousins with PD >are all within the average range. > >Frances Armstrong >[log in to unmask] > >------------------------------ > >Date: Wed, 2 Oct 1996 07:19:09 -0400 >From: ++R W Lakin <[log in to unmask]> >Subject: Re: Ropinole/Requip V Pergolide/Permax > >Helen - 80/5PD - main symptoms are excessive tremor, which has >deteriorated over the years. Present PD medication is:- > > 3 - 5mg/day Procyclidine & occassionally > half tablet 62.5 mg Madopar Dispersible which she is taking to try and >accustomise herself to L-Dopa, which she feels she needs, but which >only accentuates the tremor and causes considerable agitation.. > >Initially she tried Disipal, which almost cured the tremor, but >caused considerable nausea, and the tremor returned as before. > >We are now discussing alternastive medications with her doctor and >the following are being considered: > >1. Revert back to Disipal, but with an anti-nausia drug, such as >domaperidone. > >2. Pergolide/Permax > >3. Ropininole/Requip. > >(1) Causes us concern, as it means taking a fairly powerful drug to >counter the effect of another drug, and this seems a slipperly slope >if there are alternatives. > >(2) There have been some very worrying accounts on the List of the >severe side effects e.g. halucinations etc. of Peroglide/Permax. > >(3) Appeals to me - I'm a sucker for anything new - but our doctor >has no direct experience of Ropinole, and is reluctant to prescribe >it, but several postings have suggested that it has many lower side >effects than Pergolide. > >Has any one the list any direct experience of either pergolide or >ropinole on tremor, which seems to be one of the most difficult >symptomx of PD to allievate. > >with best wishes to you all > >Ray ([log in to unmask]) > >------------------------------ > >Date: Wed, 2 Oct 1996 10:07:22 -0400 >From: Ken Aidekman <[log in to unmask]> >Subject: PD advocacy and drug companies > >The thought that drug companies would prefer that diseases not be cured so >that they can continue profiting from pharmaceutical sales is cynical and >unproductive. As expensive as many drugs are they still remain the most >cost effective treament for disease in most instances. Drug companies >would benefit from increased NIH basic research into PD because in the >short term newly developed drug treatments, perhaps some for very specific >symptoms, will result from this work. They would love to have the federal >government do free basic research for them if it will provide new >opportunities to develop blockbuster drugs. It is in their interest to >maintain a pipeline of newer, more effective treatments because the older >ones eventually go off patent and face stiff competition from generic >manufacturers. > >A cure is not around the corner. Effective treatment is our immediate goal >and that will take newer more effective medications along side some of the >more radical surgeries and genetically engineered solutions that will be >more common in the years to come. > >The drug companies have restrictions on the types of political activity and >lobbying in which they become involved. Perhaps someone knowledgeable can >address this issue directly. The drug companies are not the enemy here; >Parkinson's is the enemy. We need support from all sources. Paranoia >about hidden motives can only hurt us. > >------------------------------ > >Date: Wed, 2 Oct 1996 08:17:37 -0400 >From: "Kathrynne Holden, MS, RD" <[log in to unmask]> >Subject: Re: Biofeedback > >Charles Countryman wrote: >> >> >> Has anyone else had experience with biofeedback >> therapy and Parkinson's or other physical problems? >> > >Charley, I don't have PD (I'm a registered dietitian and I specialize in >the nutrition needs of older adults, PD in particular) however, I use >biofeedback myself and recommend it to others. Biofeedback is now well >accepted as a means of reducing stress, blood sugar, blood pressure, and >controlling incontinence. Many insurance companies will now cover >biofeedback for a number of conditions. I would certainly encourage you >to try biofeedback, though I'd explain that you have PD and discuss your >special needs carefully. >-- >Kathrynne Holden, MS, RD >Editor-in-Chief, >"Spotlight on Food--nutrition news for people 60-plus" >Tel: 970-493-6532 Fax: 970-493-6538 >http://www.fortnet.org/~fivstar >You may wish to contact: >Better Business Bureau of the Mountain States, >< [log in to unmask]> >for further information. > >------------------------------ > >Date: Wed, 2 Oct 1996 09:53:45 -0400 >From: John Cottingham <[log in to unmask]> >Subject: Re: 10/100 vs 25/100 > >At 11:35 PM 10/1/96 -0400, you wrote: >>Hi >>Obviously reducing the amount of carbidopa did nothing for my >>memory.......twas not until I read Anne's response that I remembered that I >>had elimination of dystonia in my left foot that had been quite painful for >>about six months. The dystonia disappeared on when I replaced two CR with 3 >>10/100's. >> > >Rita: > >The therapeutic benefit of the CR tablet is only 70% of the same potency >standard release tablet. If you were taking 2 xx/100 CRs for example, you >were receiving the benefit of 140 mg of levodopa. The three xx/100s you >replaced them with provide the benefit of 300 mg of levodopa. Providing that >this increase of dosage didn't induce end-of-dose dyskinesia, you were >severely undermedicated. >John Cottingham To search the Parkinsn archive, send search requests > to [log in to unmask] with Archive Search as the subject. >LibraryH Searches of the Subject: line, From: line and Body are > possible. Look for "Revised Current Topics...." message >[log in to unmask] for Articles and Studies available by e-mail. > >------------------------------ > >Date: Wed, 2 Oct 1996 10:09:45 -0400 >From: Marjorie Moorefield <[log in to unmask]> >Subject: Re: PD advocacy and drug companies > >On Oct. 2, 1996 Ken Aidekman wrote: > >>A cure is not around the corner. Effective treatment is our immediate goal >>and that will take newer more effective medications along side some of the >>more radical surgeries and genetically engineered solutions that will be >>more common in the years to come. >**************************************************************************** >******************** > >Ken , I'm glad you mentioned that. >Someone correct me if I'm wrong, but even if they had a cure tomorrow, >wouldn't the damage already done, be irreversible? >I figure Sinemet & I are going to be going steady for the rest >of my life, or at least until something better comes along. > >I'm one who will definitely try the patch if they get it out for public >use soon. I get busy & forget to take my medications on time, >then I start bending over forward like a wilted plant needing water!!! >However, if you give a wilted plant water it will revive within a few >minutes while it takes me an hour or more! Think I'm going to have >to quit wearing my beautiful watch my DH gave me for our 25th. Anniversary >& purchase a much larger one which has a timer.. > >Can't you just see a librarian going down the book aisles, helping a >patron find a book, while her arm is happily beeping away????? I have to laugh >everytime I think of it!!!!! Someone is bound to look at me & go SH-H-H-H. > > > >As Ever, >Marjorie Moorefield >just another librarian >(with PD) > >------------------------------ > >Date: Wed, 2 Oct 1996 10:21:55 -0400 >From: Marjorie Moorefield <[log in to unmask]> >Subject: Re: 10/100 vs 25/100 > >>(Might add that I am also very sensitive to the ingredients in >>decongestants/antihistimes what have you that promote drowsiness.......most >>would give me a very wonderful 12 or 14 hours of sleeep........unfortunately >>during the work day in some instances! Perhaps there is a correlation >>between that and the carbidopa impact on some individuals.) >> >>Rita > >**************************************************************************** >****************** > >IMOHO, I don't think it's the Sinemet. I experienced the same sensitivity >to antihistimes you described. Way before my symptoms had a name, >I suddenly couldn't take ANY antihistimes anymore---the kept me AWAKE >for days & nights on end & worse than that, I couldn't stand up!!! I have >allergic asthma (which I didn't get till I was 33 years old), & suddenly >antihistimines I had taken for years, I couldn't tolerate anymore. > My allergist & I tried them >all---Seldane, Claritin, etc.. Still couldn't stand up, to say nothing of >walking!!! >Finally we settled on Inhaled Steriods with 20 tables of 20 mg. Cortisone to be >carried in my purse for backup. So far, 4 years later I seem to be able >to keep the asthma under control, but have only been taking Sinemet >for 3 years so I don't think it's the Sinemet!!! I think it's the PD. > >As Ever, >Marjorie Moorefield >just another librarian >(with PD) > >------------------------------ > >Date: Wed, 2 Oct 1996 12:00:02 -0400 >From: Camilla Flintermann <[log in to unmask]> >Subject: CareGivers' List (fwd) (fwd) (fwd) > >Here's the info about the CARE list, which newcomers to the PD list may >be interested in. Camilla >----------------------------Original message---------------------------- >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. >Welcome aboard! Questions? email me or Jeff: > Camilla Flintermann <[log in to unmask]> > Jeff Jones <[log in to unmask]> > >------------------------------ > >Date: Wed, 2 Oct 1996 12:08:06 -0400 >From: Anne Rutherford <[log in to unmask]> >Subject: Stature abd PWP > >An Unscientific set of data >We have a Parkinson Exercise group which meets Wed mornings >and today I collected input for the stature and PD investigation >Anne Rutherford <[log in to unmask]> >Newfoundland >-=-=-=-=- >Total PWP attending 15 male 7 female 8 >Height distribution male >1 at 5ft 5inches >2 at 5 8 >2 at 5 10 >1 at 5 11 >1 at 6 3 > >Height distribution Female >1 at 5ft 0 inches >3 at 5 2 >2 at 5 3 >1 at 5 4 >1 at 5 5 >-=-=-=-=-=-= > >------------------------------ > >Date: Wed, 2 Oct 1996 13:12:37 -0400 >From: bernardo klainberg <[log in to unmask]> >Subject: Re: RLS and Worms and SHIVERS, AND quakes, and shudders > >At 11:28 AM 10/1/96 +0000, you wrote: > >to bob; yup , the rls and the 'shivers' are for me quite common, 4-5 times >nightly. cant hold back the shivers which at times create a cramp. walking >is only remedy, ....but these things are minor , right? >rgds >bernard k. > >------------------------------ > >Date: Wed, 2 Oct 1996 13:15:20 -0400 >From: bernardo klainberg <[log in to unmask]> >Subject: Re: Off Day==bet it was a cloudy rainy day > >At 01:15 AM 10/2/96 +0000, you wrote: >>Greetings, >> 100 mg.). >> >>Any comments or observations will be appreciated. >> >>George L. Bousliman (age 55; diagnosed in 1989; left side thalamotomy in >>1991) >>Helena, Montana >>=== >TO GEORGE; I'LL bet it was a cloudy or rainy day when you 'tremored' non >stop. n'est pas ? > >regards, bernard > >------------------------------ > >Date: Wed, 2 Oct 1996 13:28:41 -0400 >From: bernardo klainberg <[log in to unmask]> >Subject: Re: congress adjourns without udall House vote WHAT TO DO > >At 04:10 AM 9/30/96 +0000, you wrote: >>At 05:54 PM 9/29/96 -0400, you wrote: >>>The 104th Congress has adjourned without The Udall bill being voted on in the >>>House. While it was unanimously passed in a vote in the Senate, >>>unfortunately, Congressman Tom Bliley Republican from Richmond, Virginia and >>>Congressman Michael Bilirakis Republican from Tampa/St. Pete, Florida along >>>with Newt Gingrich from Republican from Marietta, Georgia, did not >>>considerate it a priority and therefore did not schedule it for a vote. >>> Had it been voted on in the House we feel confident that it would have >>>passed since we had the support of over 235 representatives. >>>But all our work on the Udall bill is NOT lost. When Congress reconvenes in >>>January WE WILL BE THERE TOO, STRONGER THAN EVER! Our work is not done till >>>the Udall bill gets passed! >>> >> ============= > >DEAR WILL AND OTHERS; PERHAPS we shud all contact those 3, non caring cong. > >who ignored the senate's action, and ask them politely (at first) their >reasons for > >their callous behaviour, and advise them that we think of them every night > >as we do the RLS and shudder, vibrating shaking shuffle . (and post their >replies !) > > ciao >bernard k. > >------------------------------ > >Date: Wed, 2 Oct 1996 13:56:54 -0400 >From: Roy Edwards <[log in to unmask]> >Subject: International support for Udall ? > >I'm sure that like many Brits here in the UK I followed the progress of the >Udall Bill with high interest, in the realisation that it could change all >our lives. I really felt for all you Americans who worked so hard only to see >it stopped at the last stage. At times I felt impotent because I could do >nothing to help. On many occasions I considered sending a letter to support >it but had the uneasy feeling that it might be taken wrongly if a `foreigner` >tried to influence the politics in another country. However, in the light of >recent messages on the list from Stephen Lofthouse and the reply from >Marjorie Oldfield (outlining a possible format) I feel that perhaps there >might be a case for an international message of support. What do the >organisers of the forthcoming January campaign 1997 feel about this ? Would >it be appropriate ? We would need to take your advice on this. I would be >prepared, if requested, to email, write or phone and I'm sure that many >around the world would feel the same. Let us know if you feel there is >anything we can do. >Good luck in the forthcoming fight, >Every best wish, >Roy >Roy A Edwards, U.K. ([log in to unmask]) > >------------------------------ > >Date: Wed, 2 Oct 1996 10:53:41 -0400 >From: Julie King <[log in to unmask]> >Subject: Introducing Myself > >I joined the list last week and have been invited to introduce myself and tell about my >interest in Parkinson's. > >My father, who just turned turned 68, was diagnosed 8 or 9 years ago with PD. I live >about 800 miles from him with my husband and kids, so I see him only a couple of times >a year. His neurologist has recommended pallidotomy, but my father has elected not to >pursue this course, at least for now. I am now trying to educate myself about PD and >thought the Internet might be a good place to start. > >I was deeply affected by the state of my father's health when he visited two weeks ago. >Although he lives on his own and still has fairly good mobility under medication, the >general condition of his health seems quite poor to me. He looked gray in the morning >and could barely lift himself from the sofa. He fell asleep spontaneously during >conversation. His energy and color returned somewhat by noon, although he tires very >easily. I fear that he may die soon. I have many questions and concerns. I don't know >whether the symptoms he experiences are "typical" Parkinson's, or whether there may be >some other underlying pathology. I'm trying to understand how I may be of assistance >to him. > >Julie [log in to unmask] > >------------------------------ > >Date: Wed, 2 Oct 1996 14:48:14 -0400 >From: Barbara Patterson <[log in to unmask]> >Subject: Answer to your welcome (fwd) > >---------- Forwarded message ---------- >Date: Mon, 30 Sep 96 20:27:36 GMT >From: [log in to unmask] >To: [log in to unmask] >Subject: Answer to your welcome > >I am 52 years and diagnosed as a P.D. patient when i was 40 years. Until that >time i worked as a psychologist in an outpatient clinic. I could not hold that >job. But i managed to be a housekeeper and a mother for my two children. My >illness has been stable for years but is now slowly deteriorating I am >interested in reading stories about how others manage to live with this >illnes.Also i wish to hear about pallidotomy especialy from people who have had >this and of course about new research findings. > > Ida Kamphuis > >------------------------------ > >Date: Wed, 2 Oct 1996 10:54:39 -0400 >From: [log in to unmask] >Subject: $32 Million for Parkinson's research???? > >Let's take another look at the figures. NINDS published >their FY97 budget in their homepage. That number was >$695 million. NINDS receives $727 million for FY97 from >Congress. That is $32 million more than they budgeted. It >is not $100 million or even $80 million, but it's a nice piece >of change. Of course not all of that will necessarily go >towards Parkinson's research, but hopefully a significant >portion will. > >I've written to Dr. Hall and pointed these figures out to >him. Furthermore, I asked if he could identify how much of >is FY97 budget will be in Parkinson's research. I explained >to him the melancholy mood the Parkinson's research >advocates find themselves in. Yes, we have accomplished a >great deal, but how much of a real difference as measured in >dollars? Dr. Hall has enthusiastically supported our efforts. >His concern from the outset was if he were mandated to >spend more on Parkinson's research but didn't get more >money, he would have to take from other disease groups. >Now we will see how supportive NINDS and Dr. Hall are >of Parkinson's research. It seems to me that he got what he >desired - more money and no earmarking. I think we can >safely say that the Parkinson's advocates were responsible >for NINDS receiving this increase. If the majority of the >increase is not spent on Parkinson's research, we will point >out this to Congress next year as a compelling reason for >earmarking. > >I think that is one of the things we must do differently. We >need hard facts. What NINDS does with this additional $32 >million will be one fact. As the new budget gets analyzed, >we need to take note of the various areas of wasteful >spending that are sure to be there. Repeatedly we were >asked where should we get the money from? Next year I >want to have a list of answer > >. > >------------------------------ > >Date: Wed, 2 Oct 1996 16:22:02 -0400 >From: [log in to unmask] >Subject: Re: Off Day/Sinamet-deteriorate > >A few years back I noticed a couple of my Sinemet tablets had turned gray in >color. >(they had been in my coat pocket -. unwrapped, mind you!) >Called the pharmaceutical house (whichever it was back then) > was told that the levodopa deteriorates and loses its potency when >exposed to heat, light, and air. >(I recall the PDR cautioned "Do not expose...... keep in dark air-tight > container" or something to that effect. > >[log in to unmask] (Mary Manfredi) > >------------------------------ > >Date: Wed, 2 Oct 1996 17:58:32 -0400 >From: "(Martha Rohrer)" <[log in to unmask]> >Subject: Re: $32 Million for Parkinson's research???? > >On 10/02/96 10:54:39 J. Cordy wrote: >> > >>I think that is one of the things we must do differently. We >>need hard facts. What NINDS does with this additional $32 >>million will be one fact. As the new budget gets analyzed, >>we need to take note of the various areas of wasteful >>spending that are sure to be there. Repeatedly we were >>asked where should we get the money from? Next year I >>want to have a list of answer >>. > >Does anyone have any figures om the number of young-onset PWP, and the >percentage of this group within the total Parkinson population, both within >the US and world wide? It might be helpful to approach congress and research >centers with these figures. This may be more productive than simply using >the total number of cases. Unfortunately, there seems to be a perception on >the part of the general public that PD is an affliction that only happens to >the aged population, and that research monies are better spent on diseases >that tend to afflict the young. It has been frustrating to find that the >general public all too often mistakenly confuses PD with Alzheimers, with >senility, and with the very old. I am afraid the underlying, unconscious >attitude all too often is, why bother. > >A week ago, a local TV station aired a ten minute segment on a local man's >pallidotomy. This was during prime time, and was a follow-up from the >original telecast several months ago. It would be a very effective way to >educate the public if we were to approach the program directors of our local >stations about filming a story featuring local area young Parkinsons who are >coping with jobs, family life, and a devistating ailment .... with an >emphasis on what adequately funded research could do for them. > >By the way, my rep in congress: Calvin Dooley, 20th District California. >(But maybe not after November) Also, within my sphere, George Radanovich, >19th District. > >Sometimes a setback can have its useful aspects, especially if it makes us >mad. It looks like we may be coming back in January with world-wide >reinforcements. > >Martha Rohrer > >------------------------------ > >Date: Wed, 2 Oct 1996 19:05:26 -0400 >From: Marjorie Moorefield <[log in to unmask]> >Subject: Re: $32 Million for Parkinson's research???? > >On Oct. 2, 1996 J. Cordy wrote: >>snip >>I've written to Dr. Hall and pointed these figures out to >>him. Furthermore, I asked if he could identify how much of >>is FY97 budget will be in Parkinson's research. I explained >>to him the melancholy mood the Parkinson's research >>advocates find themselves in. Yes, we have accomplished a >>great deal, but how much of a real difference as measured in >>dollars? Dr. Hall has enthusiastically supported our efforts. >>His concern from the outset was if he were mandated to >>spend more on Parkinson's research but didn't get more >>money, he would have to take from other disease groups. > >**************************************************************************** >****************** >Mr. Cordy , >In one of my most recent letters FROM U.S. Senators I feel >the Senator from New Jersey,(Bill Bradley), explains it better than most. >The letter is dated Sept. 19, 1996. ( I'm sure many of you received this >letter also). > >Bill Bradley says that he shares our desire in finding a cure for Parkinson's >Disease, but he feels that finding a cure for this and other diseases, >can be addresses through continued funding for biomedical research >at the National Institues of Health (NIH). >. >Senator Bradley does go on to say that he was very disappointed that the > final comprise version of the Budget Resolution, which was recently approved >by both the House and the Senate, includes a total of $2.1 billion in cut to >NIH over the next seven years. He opposed passage of this final compromise >version of the Budget Resolution, because of the drastic cuts in vital areas >such as funds for the NIH. > >He goes on to say that there is still hope, as this only serves as guidance >to the Appropriations Committees, but are not binding. The final decision >about funding for the NIH will be made when the Labor, Health and Human >Services bill passes the Congress. It is his hope that a lower level of cuts >will be included in that legislation. He promises that he will continue to >fight >for adequate funding for health research activities. >Maybe $32 Million was added back into that legislation ? > > >**************************************************************************** >*************** >Bernardo, >I think Mr. Cordy answered your question when he said that >Dr. Hall felt that if he earmarked more for PD he's have to take >it away from other diseases. > IMOHO, I think that is one of the reasons many Senators and Reps. > won't get behind the Udall Bill. They have to answer to ALL their >constituents. > >Once when my Daughter was quite small, she asked for something, >and I told her I couldn't afford it. She said , "Why?, you still have >check blanks left Mama"? >I have thought of that many,many times lately!!!!! > >As Ever, >>From South Florida >Marjorie Moorefield >just another librarian (with PD) ><[log in to unmask]> > >------------------------------ > >Date: Wed, 2 Oct 1996 22:44:46 -0400 >From: Marjorie Moorefield <[log in to unmask]> >Subject: Found Money > >I just had a thought, yes, I know it's time for bed for normal people, >but PWP's are just waking up--Right? > >During the time I was watching C-Span last week, one of the Reps. got up and >said he was against something or another, because no one could >hear it. Turns out he was talking about the radio messages they >try to send to Cuba. Of course, Cuba jams the signals, so no one >down there hears it anyway. I can't remember the amount of money >he said was allocated for that each year, but it was in the millions. >Now, this is my thought---instead of only trying to get sponsors for the >Udall Bill, maybe we, as a group should study the budget & find out >where some of this money is being spent. If we feel it's being wasted >we could start a list. Many of us could help by doing research work on >this list and find out what these funds are really doing. >Then when they ask in Janurary "Where do you propose we get the funds" >THE PWP'S CAN TELL THEM!!!!!!! Boy , wouldn't that surprise them???? >A powerful, organized group is looking over their shoulders!!!!! > > > >In South Florida, where my Little Sis from Ft. Worth, Tx. is >coming in for the week-end & I have bribed the weatherman >to NOT let it rain while she's here. > >Marjorie Moorefield, >just another librarian(with PD) ><[log in to unmask]> > >------------------------------ > >Date: Wed, 2 Oct 1996 23:27:50 -0400 >From: Coleen Pettit <[log in to unmask]> >Subject: Re: nurtrasweet > >Hi Nancy and all :), > > Boy this is scarrryyy! Do you or anyone else have any suggestions for what >to use instead of sugar/nutrasweet? My hubby also has diabetes so he can't >have too much sugar. He has a few of the symptoms you described. We are >going to a neurologist in Medford, Oregon on Friday (we live in Grants Pass) >to see if they think this is PD or what else it could be. >Also, maybe if one doesn't use too much Nutrasweet then it would be ok? >Anyone here in Southern Oregon...btw? > >Thanks, Coleen :-) > > > > >At 11:11 AM 9/23/96 -0400, you wrote: >>To all interested in my Nutrasweet Poisonig: >> > > > > > > >------------------------------ > >Date: Thu, 3 Oct 1996 06:46:24 -0400 >From: Paul & Kathy Sedler <[log in to unmask]> >Subject: Re: nurtrasweet > >At 11:27 PM 10/2/96 -0400, you wrote: >>Hi Nancy and all :), >> >> Boy this is scarrryyy! Do you or anyone else have any suggestions for what >>to use instead of sugar/nutrasweet? My hubby also has diabetes so he can't >>have too much sugar. He has a few of the symptoms you described. We are >>going to a neurologist in Medford, Oregon on Friday (we live in Grants Pass) >>to see if they think this is PD or what else it could be. >>Also, maybe if one doesn't use too much Nutrasweet then it would be ok? >>Anyone here in Southern Oregon...btw? >> >>Thanks, Coleen :-) >> >> >> >> >>At 11:11 AM 9/23/96 -0400, you wrote: >>>To all interested in my Nutrasweet Poisonig: >>> >Have you heard of Stevia (stevia rebaudiana)? The leaves are used as >sweetener/flavoring agent - two drops equal one tsp white sugar - is 300 >times sweeter than sucrose (white sugar) - one tablespoon dried leaves in >quart of boiling water and use resulting liquid in place of 1 cup sugar per >a major herb magazine. It is used mainly by diabetics as sweetener. FDA >has classified it as a food additive and issued an import alert saying food >additive is unsafe until proven otherwise. FDA considers it safe as dietary >supplement yet unsafe as food additive - go figure. This plant comes from >Paraguay and Brazil. > >Someone else may want to jump in and add to this. I know of several >diabetics who use it without adverse effects and who prefer it because it is >natural and seems to be assimilated by the body better. (Only thing they >disliked was it turns everything GREEN!) You should consult with your >husband's diabetes specialist, a dietician, or whoever you feel could give >you further information regarding your husband's individual circumstances. >Licorice root is sometimes used as a sweetener (50 times sweeter than sugar) >but affects the adrenals very strongly. Let me know if you would like >further information about the herbs. Just wanted to throw this out there >for consideration. > >Kathy - friend of John (72/2) >> >> >> >> >> >Kathy Sedler, Herbalist >Sedler's MOTHER EARTH HERBS >5272-A West Gold Ct. >Beale AFB, CA 95903 >(916) 788-0138 >email [log in to unmask] > >------------------------------ > >Date: Wed, 2 Oct 1996 23:53:29 -0400 >From: Ken Becker <[log in to unmask]> >Subject: Re: PD advocacy and drug companies > >My father has a watch that speaks the time every hour on the hour and can >be set for a specific time, it was only $10.00 at Radio Shack! Until the >patch comes out for general use, this might help. > > > > >[OO] LOOKING FOR RADIOS! >Ken Becker >[log in to unmask] > >------------------------------ > >Date: Thu, 3 Oct 1996 00:00:13 -0400 >From: Lynda McKenzie <[log in to unmask]> >Subject: Re: Off Day > >>The question about an "off day" came just after I'd experienced the same >>thing (though not on the same day, so we can't blame the stars or the >>weather). Yesterday I was locked into rigidity no matter what I did. >>Intake of food didn't seem to be a factor. I wondered about the pills >>themselves -- is it possible that Sinemet can deteriorate significantly >>if, for instance, exposed to heat in a car -- or to cold, for that matter? > >Interesting that this topic should come up. I have been wondering exactly the same thing. Lately the rigidity has been so long lasting I wondered if it could be possible that I'd gotten a 'bad' batch of sinemet. > > Currently I 'm taking liquid sinemet and I also wonder if the amount of ascorbic acid in the mixture has anything to do with the absorbability of it. I know that one day I was beside myself with frustration by dinner time, I was basically immobile - I had guzzled most of the litre of 'meds' by then in an effort to unlock my joints. For some strange reason, someone looked into the coffee grinder and asked why there was blue powder in it - it seems I'd ground the sinemet in the morning , made up the oj, but forgot to mix the two. I'd gone all day on almost a litre of plain oj, 1 CR and umpteen permax. No wonder I couldn't move! Needless to say I haven't done that since, but lately I'm beginning to wonder what else I may be doing wrong. > >Last night we went out for dinner and I had lamb. It was delicious and I ate much more protein than normal. I know that last night's zombie state was due to the protein consumed, but I'm wondering what else might be contributing. > >Any suggestions would be welcome. > >Lynda > >------------------------------ > >End of PARKINSN Digest - 1 Oct 1996 to 2 Oct 1996 >************************************************* > >