Please assist in removing us from your list. Thank you. -----Original Message----- From: Automatic digest processor [SMTP:[log in to unmask]] Sent: Tuesday, 27 January 1998 6:24 To: Recipients of PARKINSN digests Subject: PARKINSN Digest - 25 Jan 1998 to 26 Jan 1998 - Special issue There are 29 messages totalling 972 lines in this issue. Topics in this special issue: 1. Electric Shock?? Help (2) 2. Awareness day / month ? (2) 3. Writing Improvement 4. subscribe 5. Fw: Re: Help needed! 6. cardiac bypass surgery. to Malibumal (2) 7. Non-PD (sorta) GREAT Site (2) 8. Handwriting hint 9. Slow increase of PD drug 10. apology 11. GEORGE LUSSIER'S WEB SITE. 12. non-pd joke 13. near new (2) 14. Hello and request for information (3) 15. More BS / joke 16. Night Shakes (2) 17. c. hirst divinty 18. World Parkinson Day 19. SYMMETREL 20. self introduction 21. Support Groups ---------------------------------------------------------------------- Date: Mon, 26 Jan 1998 00:51:27 EST From: Mary U CPR <[log in to unmask]> Subject: Re: Electric Shock?? Help Sharon Just my feelings---electric shock therapy does have a place in certain instances but I cannot see it plausable for PDers. Gee, I've noticed a lot of Parkies end up in Psychiatric wards after hospital admissions because of their confusion and hallucinations. The Psy unit is not the best answer and can actually do harm. For one thing they are not up to date on parkinson, seems that hospital trips is detrimental to PDers as so many hospital personnell do not understand the disease and especially the need to continue meds. Changes in environment is a big factor on their worsening confusion on admission. Seems also that any medication change to decrease or increase causes a hallucination. Hope you have a good ND who specializes in movement disorders--insist the the Psychiatrist consult him prior to shock therapy. I have not met a Parkie who ever had shock therapy. Hope things get nbetter for you Mary CG for Mel 76/12 (NH placement Nov 13th) but we are adjusting. ------------------------------ Date: Mon, 26 Jan 1998 01:20:41 -0500 From: Judith Richards <[log in to unmask]> Subject: Re: Awareness day / month ? Will, The Parkinson Foundation of Canada participated in the first World Parkinson Day on April 11, 1997. Our national newsletter said "the idea originated with the European Parkinson's Disease Association. The association encompasses 17 countries located throughout Europe. This provides a great opportunity for the 31 countries worldwide which have national Parkinson's foundations and associations to focus attention on the impact that this condition has on Parkinsonians, care givers, family members and the community. "The day also provides us with an opportunity to be proactive on behalf of Parkinsonians. This day can be a way of declaring what Parkinsonians need and want to ensure that they can live the best possible quality of life. What Parkinsonians really want is: * To be referred to a specialist with knowledge of Parkinson's. * An early, rather than later, referral to a multi-disciplinary team of health and social care providers. * The diagnosis to be delivered to them in a way that enables them to accept the condition and to feel that they are a primary part of the 'team.' * Continuity of care and access to community support services. * To be allowed to take 'ownership' of the management of their care. "April 11 has particular significance in that it marks the birthday of Dr. Parkinson." Judith Richards London, Canada [log in to unmask] At 11:50 25/01/98 -0500, will johnston wrote: >Dear list members, > >There have been several notes about Parkinson's Awareness Day or Month. >Is this a national campaign? Local? A worldiwide campaign? Is there >some reason for a particular month or day? Is some particular organization >or group of organizations pushing this? APDA is talkimg about having >local governmental entities proclaim April 11 as World Parkinson Disease >Day? Is this a strictly APDA idea? ------------------------------ Date: Mon, 26 Jan 1998 02:19:48 EST From: ABAKALK <[log in to unmask]> Subject: Writing Improvement My handwriting has deteriorated to a point where only my wife can figure out what it says. My efforts to handprint were unsuccessful but they led me to a way to enlarge the letters and greatly improve their clarity. I normally hold a pen or pencil between my thumb and forefinger resting on and guided by my third finger. If I hold it between my forefinger and third finger and use my thumb to guide it my writing is enlarged and easily readable. Try it and let me know if it works that way for you. Good luck. ------------------------------ Date: Mon, 26 Jan 1998 08:58:05 +0100 From: Peter Klinkhammer <[log in to unmask]> Subject: subscribe This is a multi-part message in MIME format. --------------69AF5DDDBCEF9D877E036524 Content-Type: text/plain; charset=us-ascii Content-Transfer-Encoding: 7bit subscribe parkinsn Klinkhammer Peter --------------69AF5DDDBCEF9D877E036524 Content-Type: text/x-vcard; charset=us-ascii; name="vcard.vcf" Content-Transfer-Encoding: 7bit Content-Description: Card for Peter Klinkhammer Content-Disposition: attachment; filename="vcard.vcf" begin: vcard fn: Peter Klinkhammer n: Klinkhammer;Peter org: Medizinische Einrichtungen der Heinrich Heine Universität Düsseldorf, Abteilung für Datenverarbeitung, Medizinische Subsysteme uorgname email;internet: [log in to unmask] x-mozilla-cpt: ;0 x-mozilla-html: FALSE version: 2.1 end: vcard --------------69AF5DDDBCEF9D877E036524-- ------------------------------ Date: Mon, 26 Jan 1998 20:08:18 +1100 From: Jim Slattery <[log in to unmask]> Subject: Fw: Re: Help needed! >Subject: Constipation Protocol-Corrected As part of my daily routine, I dissolve 1/4 teaspoon of epsom salts (magnesium suplhate) in 2 oz. (60 ml) hot water in a glass, then add 6 oz (180ml) whole orange juice. I drink this with my first dose of tablets for the day. It serves three purposes: 1. It helps to keep me regular. 2. The magnesium is helpful in treating cramp (a common symptom of PD). 3. The sulphur assists in the maintenance of healthy skin and hair. (Skin complaints are a common symptom of PD). For what it's worth, Jim Slattery [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 06:52:26 -0500 From: Howard Harrington <[log in to unmask]> Subject: cardiac bypass surgery. to Malibumal At 12:10 PM 1/25/98 EST, you wrote: >i wonder if you have had continued chest soreness and mild pain (not angina) >but apparently related to healing of the wound even at this late date...and >whether that might be parkinson related. > Malibumal, Concerning by pass surgery (cardiac). I had quad by-pass 2 years ago. I am 62 and have been diagnosed with PD for 7 years. About pain in the chest area. I have had slight pain occasionaly. In fact about 6 months ago I was doing some yard work and I was clipping hedges. I didn't realise that I was using my chest muscles. I had to go to the ER because I didn't want to take a chance. Your Cardiologist and Neurologist should be consulted. I am not a good one to ask about this problem because one of my PD symptoms is numbness and lack of feeling especially in my extremties. I don't feel the cold temperature like I use to . I can keep the thermostat at 65 and it wouldn't bother me. I have also have cut myself gotten slivers in my hand etc. Any pain in your chest should be told to your physician. Some mistakes we are only allowed to make once. Don't let this be one of them. Bud Harrington ------------------------------ Date: Mon, 26 Jan 1998 09:52:39 UT From: Barbara Mallut <[log in to unmask]> Subject: Non-PD (sorta) GREAT Site Dear List-family... Every once in a while I come across a Web site that's so unique and interesting that I feel almost COMPELLED to post about it here! Something about that site reaches out to me, saying "Super site for those of the Parkie Persuasion!" <smile> THIS site will challenge and tease your brain! In fact, you'll go to "Brain Boot Camp" when ya logon here! There's insightful commentaries, games that'll push your brain to it's limits, the "Mind Machine," <don't ask> and soooo much more that I don't know where to begin. Well.. actually I *DO* know where to begin... I'll begin by sharing the URL (Internet address) for "Hot Rod in Your Mind," which is the name of this outstanding Web site (based, apparently, on the book of the same name). Go to: http://www.botree.com HEY! Hey YOU! (yes, YOU!) What ya doin' just sitting 'n staring at your keyboard for, huh? Go on over there *NOW!* (and have FUN!) Ohhh (world's shortest disclaimer follows) Ain't my site and I'm not making any moolah from it. Sending ya all warm smiles 'n huggles across the far reaches of Cyberspace. Barb Mallut [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 07:31:44 -0600 From: Kathy Kunz <[log in to unmask]> Subject: Handwriting hint Abakalk-- It works! (Holding the pen between second and third fingers and guiding with the thumb} Who would have thought such a small adjustment could make that much difference? But it does and you've made my day! Listfolk, give it a try. Thanks a heap. Kathy Kunz (62.3.5) <[log in to unmask]> for Don McK.-- hang in there for Vivian and the girls--we all YQ! ------------------------------ Date: Mon, 26 Jan 1998 08:38:04 -0500 From: Delda White <[log in to unmask]> Subject: Slow increase of PD drug Just to add our two cents' worth: My husband was on an extremely low dosage of parlodel, after terrible experiences with Sinemet and Permax (he flunked them both). He saw the Neuro about 3 weeks ago and he increased the dosage of parlodel -- said Bob's dosage was so low as to be useless. Well, Bob increased it and almost immediately experienced increased frequency of urination -- very marked. I looked in ref. book and it listed that as a side effect. So I suggested he cut way back, and things have gotten better. Had it not been for Camilla and others who have spoken about increasing dosages very, very slowly, we would have been in tough shape. He's still taking a very low dose of Parlodel, but at least the urination isn't as frequent. We're hoping a real slow increase will help the PD without the side effects. Thanks, everyone. Delda White CG Bob 66/1. ------------------------------ Date: Mon, 26 Jan 1998 08:40:22 -0500 From: donald mckinley <[log in to unmask]> Subject: apology i only took sutersweet short time when i asked my nero about it i told you what he had to say. he knew at the time i had not used for years. but did not want to up set me in any way. because once i get some thing in my head it is almost inposbel to get it out also just ask vivian. i use equal as a sweetner. there is even talk that in not good for you. look at all pop it is in. what does a person that has suger to do do. as i said what can you eat,drink,or do that is not good for you. beer,smoking,sun bathing. so i just do what i want and do it. you know the man way above will make that decion for you. oh yes how bout sex. my age i don't worry about that. but vivian and i still hold each in our arms. and i wandering hand hands. what is that tv show about angels? when i hold vivian i swear she glows just like them. guess i am just crazy. but she deos glow in dark. [log in to unmask] 73/26, lima,ohi I.Y.Q. DON&VIVIAN LOVE OF MY LIFE-52 BEST MED FOR PD IS BELIEF IN YOUR SELF ------------------------------ Date: Mon, 26 Jan 1998 08:03:39 -0600 From: "Charles T. Meyer" <[log in to unmask]> Subject: Re: Electric Shock?? Help Sharon and Mary, ECT is occasionally necessary for depressed PD patients and in fact sometimes it is used for PD even in the absence of depression. It can sometimes by the release it causes of neurotransmitters cause an improvement in PD symptoms. Therefore If your doctor recommends it (both PD and psychiatrist) I would suggest going along with it. Medically it is pretty safe and is the most effective single treatment available for intractable depression. Regarding Mary's comment about him being better off not on a psych unit as a psychiatrist I tend to agree with her. It depends on the unit but as all us PWP are aware it takes a special knowledge of PD to meat the needs of a PWP. For instance the critical of exact timing of meds is relatively unique to PD. Most psych nurses are not attuned to this. It depends on the particular hospital as to which unit he would be better off on but in general I tend to agree with Mary that neuro would be better. Good luck. Charlie Mary U CPR wrote: > > Sharon > Just my feelings---electric shock therapy does have a place in certain > instances but I cannot see it plausable for PDers. Gee, I've noticed a lot of > Parkies end up in Psychiatric wards after hospital admissions because of their > confusion and hallucinations. The Psy unit is not the best answer and can > actually do harm. For one thing they are not up to date on parkinson, seems > that hospital trips is detrimental to PDers as so many hospital personnell do > not understand the disease and especially the need to continue meds. Changes > in environment is a big factor on their worsening confusion on admission. > Seems also that any medication change to decrease or increase causes a > hallucination. > Hope you have a good ND who specializes in movement disorders--insist the the > Psychiatrist consult him prior to shock therapy. I have not met a Parkie who > ever had shock therapy. > Hope things get nbetter for you > Mary CG for Mel 76/12 (NH placement Nov 13th) but we are adjusting. -- CHARLES T. MEYER, M.D. Middleton, WI [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 09:28:25 -0400 From: George Lussier <[log in to unmask]> Subject: GEORGE LUSSIER'S WEB SITE. Dear reader, I thought a few of you would be interested in knowing that I have [ that is I've begun] to develop a web site. You are welcomed to visit the site at http://www.ultranet.com/~glussier/ ALL THAT IS ON IT THUS FAR ARE 3 PHOTO ABOUT MY PALLIDOTOMY AND A SHORT STORY BUT WHAT THE HECK. SINCE I HAVEN'T INSTALLED A GUEST BOOK YET IF YOU DO COME A CALLING PLEASE SEND ME A BRIEF NOTE AT MY E-MAIL ADDRESS THANKS GEORGE [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 09:43:09 EST From: Nancy Vanhook <[log in to unmask]> Subject: non-pd joke <HTML>For Greg Beukema--delete this. It is a joke & you don't want them on the list. I rather <U>like</U> having them and am very careful to send only the best jokes and not too often.<BR> For others who like an occasional joke. . . . . enjoy . . . . .Nancy V<BR> <BR> <BR> A pheasant was standing in a field chatting to a bull. "I would<BR> love to be able to get to the top of yonder tree', sighed the pheasant,<BR> 'but I haven't got the energy'.<BR> <BR> 'Well, why don't you nibble on some of my droppings?' replied the <BR> bull.<BR> <BR> 'They're packed with nutrients'.<BR> <BR> The pheasant pecked at a lump of dung and found that it actually<BR> gave him enough strength to reach the first branch of the tree. The<BR> next day, after eating some more dung, he reached the second branch.<BR> <BR> And so on and so forth. Finally, after a fourth night, there he was<BR> proudly perched at the top of the tree. Whereupon he was spotted by a<BR> farmer who dashed into the farmhouse, emerged with a shotgun, and shot<BR> the pheasant right out of the tree.<BR> <BR> Moral of the Story:<BR> <BR> Bullshit might get you to the top, but it won't keep you there. <BR> </HTML> ------------------------------ Date: Mon, 26 Jan 1998 09:01:06 -0600 From: Bill Jorgensen <[log in to unmask]> Subject: near new it has been awhile since i was on this list so i'll begin again. my name is bill jorgensen. i live in minden ne. 49/6 i have had a thalamotomy in aug of 96 and am really doing great on my right side. i'm looking forward to having a dbs implanted sometime in the near future. that is if we can get the insurance company to cover the cost. i am looking for any information on this subject that will help in pursuading the ins. company that this is a great help. still shaking on the left side keep smiling bill [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 10:28:13 EST From: Barbara Roth <[log in to unmask]> Subject: Hello and request for information Hello. I am Barbara Roth and have had PD for 8 years. I recently retired from teaching English in high school, and so far am loving retirement. Several years ago I subscribed to this list, but really did not have the time to deal with all of the wonderful mail that was generated. Now I have lots of time. Recently I began taking Mirapex plus sinemet, and I've experienced problems with muscle cramping and swolen feet. Does anyone have experience with this or other effects which may be related to mirapex? Love to hear from all of you. Barbara ------------------------------ Date: Mon, 26 Jan 1998 11:18:36 EST From: Mary Sheehan <[log in to unmask]> Subject: More BS / joke Loved the pheasant joke and couldn't resist sending this old joke along . A bull being led to a new pasture left a dropping in the middle of the road. A small bird flew by and stopped to investigate. Pecking away, the bird found lots of tasty seeds and began to chirp with joy. It was so busy pecking and chirping that it didn't see a car approaching and the bird was hit by the car and killed. Moral of the story: If you're full of bullshit, keep your mouth shut. And that's enough BS for now. Mary ------------------------------ Date: Mon, 26 Jan 1998 11:24:26 -0500 From: donald mckinley <[log in to unmask]> Subject: Re: Hello and request for information At 10:28 AM 1/26/98 EST, Barbara Roth wrote: >Hello. I am Barbara Roth and have had PD for 8 years. I recently retired >from teaching English in high school, and so far am loving retirement. >Several years ago I subscribed to this list, but really did not have the time >to deal with all of the wonderful mail that was generated. Now I have lots of >time. > >Recently I began taking Mirapex plus sinemet, and I've experienced problems >with muscle cramping and swolen feet. Does anyone have experience with this >or other effects which may be related to mirapex? > >Love to hear from all of you. > >Barbara > barbara don 73/26 i just stared mirapex a couple of weeks ago. from what i read on the list i am on it verey heavy it has helped me to sleep. i do not shake as much in wards or ouwtwards as long i dont leave the house. my sinnmemment is allways very heavy. but after 26yrs is diff 3 t0 10 and 50 and 70's is it any help? don mckinley ------------------------------ Date: Mon, 26 Jan 1998 16:30:30 +0000 From: Simon Coles <[log in to unmask]> Subject: Re: Awareness day / month ? >1. Is there any reason for this particular day? April 11 is the second >saturday in April Its his birthday. >2. This is to be WORLD Parkinson Disease Day. Are foreign PD groups >participating? The local media would want to know. The UK PDS and European EPDA have participated in earlier years. It is pretty important in the UK PDS fundraising calendar, so I would imagine they'll keep participating :-) >3. Is this a strictly APDA operation? From the letter I would gather that >April 11 was set aside as World Parkinson Disease Day and that APDA is a >participant. >From what I recall, the World Health Organisation is involved and has given the day its blessing. Simon --------- My opinions are my own, NIP's opinions are theirs ---------- Simon J. Coles Email: [log in to unmask] New Information Paradigms Work Phone: +44 1344 778783 http://www.nipltd.com/ Work Fax: +44 1344 772510 =============== Life is too precious to take seriously =============== ------------------------------ Date: Mon, 26 Jan 1998 12:06:41 -0500 From: "Gregory E. Leeman" <[log in to unmask]> Subject: Re: Hello and request for information Hi Barb, I just started taking Mirapex as well and yesterday for the first time post-pallidotomy had cramping in both my feet and for the first time ever my lower left abdomen(pelvis area). I will stay in touch. Regards, Greg Leeman 37/6 [log in to unmask] -----Original Message----- From: Barbara Roth <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Monday, January 26, 1998 10:33 AM Subject: Hello and request for information >Hello. I am Barbara Roth and have had PD for 8 years. I recently retired >from teaching English in high school, and so far am loving retirement. >Several years ago I subscribed to this list, but really did not have the time >to deal with all of the wonderful mail that was generated. Now I have lots of >time. > >Recently I began taking Mirapex plus sinemet, and I've experienced problems >with muscle cramping and swolen feet. Does anyone have experience with this >or other effects which may be related to mirapex? > >Love to hear from all of you. > >Barbara > ------------------------------ Date: Mon, 26 Jan 1998 11:11:38 -0600 From: "Charles T. Meyer" <[log in to unmask]> Subject: Re: near new Bill, Your doctor should be able to do most of that. You will need his/her certification that this is a procedure that can give you benefit. Only he can provide this information. The device is certified by the FDA so that in itself proves that it is not an experimental procedure/devise. They may argue since it is possible that you are the first of their enrollees to apply but I doubt that they can deny you, If you have any trouble that your doctor won't help you with contact me. Good luck, Charlie Bill Jorgensen wrote: > > it has been awhile since i was on this list so i'll begin again. my name > is bill jorgensen. i live in minden ne. 49/6 i have had a thalamotomy in > aug of 96 and am really doing great on my right side. i'm looking forward > to having a dbs implanted sometime in the near future. that is if we can > get the insurance company to cover the cost. > > i am looking for any information on this subject that will help in > pursuading the ins. company that this is a great help. > > still shaking on the left side > keep smiling > bill > [log in to unmask] -- CHARLES T. MEYER, M.D. Middleton, WI [log in to unmask] ------------------------------ Date: Mon, 26 Jan 1998 10:17:30 -0800 From: "Claudia J. Goldberg" <[log in to unmask]> Subject: Re: Night Shakes Richard, I am 53 dx. 4 mo ago. Like you, I was surprised when my spouse told me that I was shaking vigorously during the night also. He described it as being like an earthquake! I had no idea it was happening. Claudia Goldberg 53/4 mo. lots of meds Richard V. Fisher wrote: > According to my wife, I was surprised to hear that I have had 3 or 4 > episodes of rather violent shaking of my entire body as I sleep. The > vigorous vibrations do not wake me up but they wake my wife. I am 70 years > old and in the early stages of PWP, diagnosed about 2 years ago. I believe > that the shakes are related to PD but I have not heard nor read anything > about them. Does anyone have information about night shakes? I would > appreciate hearing about them. > > RV Fisher > > ................................................................. > Richard V. Fisher [log in to unmask] > Geological Sciences (805) 893-3946 (voice) > University of California (805) 893-2314 (fax) > Santa Barbara, CA 93106 http://magic.geol.ucsb.edu/~fisher ------------------------------ Date: Mon, 26 Jan 1998 11:30:17 -0700 From: Nancy Burnham <[log in to unmask]> Subject: Re: Non-PD (sorta) GREAT Site Great site Barb, thanks for sharing. Nancy B cg for Don 64/14 -----Original Message----- From: Barbara Mallut <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Monday, January 26, 1998 5:38 AM Subject: Non-PD (sorta) GREAT Site >Dear List-family... > >Every once in a while I come across a Web site that's so unique and >interesting that I feel almost COMPELLED to post about it here! Something >about that site reaches out to me, saying "Super site for those of the Parkie >Persuasion!" <smile> > >THIS site will challenge and tease your brain! In fact, you'll go to "Brain >Boot Camp" when ya logon here! There's insightful commentaries, games that'll >push your brain to it's limits, the "Mind Machine," <don't ask> and soooo much >more that I don't know where to begin. > >Well.. actually I *DO* know where to begin... I'll begin by sharing the URL >(Internet address) for "Hot Rod in Your Mind," which is the name of this >outstanding Web site (based, apparently, on the book of the same name). > >Go to: http://www.botree.com > >HEY! Hey YOU! (yes, YOU!) What ya doin' just sitting 'n staring at your >keyboard for, huh? Go on over there *NOW!* (and have FUN!) > >Ohhh (world's shortest disclaimer follows) Ain't my site and I'm not making >any moolah from it. > >Sending ya all warm smiles 'n huggles across the far reaches of Cyberspace. > >Barb Mallut >[log in to unmask] > ------------------------------ Date: Mon, 26 Jan 1998 13:31:52 -0500 From: donald mckinley <[log in to unmask]> Subject: c. hirst divinty charley you arethe kind at times that brings out mr don pd. you never said any thing about my post only complained of my spelling me aand my keyboard have trouble in spelling you see i only have so much time to get my post out till server cuts me off. then i got to sign back on which is time comsuming. spelld wrong i suppose. barb and janet ken at times reposted my post with the correct spelling. i try use fonex. i have seen siemet spelled so many ways. now if you where pulling my leg ok hey i spelled your name wrong c hirsch see how dumb i am. so why answer the hole post then say something i ment was THE BEST MEDS FOR PD IS HOPE7DIVINITY. IGUESS YUO COULD NOT READ OR UNDER STADAND ANY THING I SAID SO SORRY. VIVIAN IS GOING TO BUY ME A BOOK WITH ALL THE WORDS ON HOW TO SPELL. BUT BEING 73/26 IGOT LOT OF TIME TO LOOK WORDS UP RESIGN ON OK OR DO YOU HAVE ONE OF COMPUT. THAN DO ALL YOU SPELLING. JUST HAD TIME RESIGN ON IT OK. NOT MAD BUT 50%AND50% MR PD & MR DON I HOPE YOU ENJOYED TODAYS JOKES AS I DID HOPE LOT MORE COME TO HELP ME KEEP MR DON FOR VIVIAN IF YOUWAS PULLING MY LEG OK I GOT TO GO BACK TO SQUARE 1 AFTER 26 YRS AM SCAIRD WILL NEED LOT HELP FROM THE LIST. YOU CAN BE ONE. VIVIAN SAY I AM HAVEING TROUBLE IN WHEN SOME ONE IS PULLING MY LEG ANY MORE. MAN I COULD SPOT THAT MILE WAY CAN'T NOW. MR PD IS GETTING TO STRONG SO I WILL SAY SO LONG HAVE GOOD DAY DON ------------------------------ Date: Mon, 26 Jan 1998 15:10:29 -0330 From: Anne Rutherford <[log in to unmask]> Subject: World Parkinson Day Dear Will I was on the committee for the first Parkinson Awareness (Week) in Canada It was in 1983 or 1984-- I could look it up in my files. At that time it was a "Week" and was held in September. It became April and a month soon after. I will try to answer some of your questions There have been several notes about Parkinson's Awareness Day or Month. Is this a national campaign? Local? A worldiwide campaign? A) In Canada it is both local and National. Most Parkinson groups plan special activities during this Month. I think it should be world wide. Is there some reason for a particular month or day? A) April was chosen because James Parkinson was born April 11 way back when. Is some particular organization or group of organizations pushing this? A) don't know about the USA. Here in Canada we try to make a lot of noise. APDA is talkimg about having local governmental entities proclaim April 11 as World Parkinson Disease Day? A) In Canada we Parkies move slowly. We need a month to get all our Awareness projects completed. But we do mark the special day. See last answer-- Is this a strictly APDA idea? A) No The Canadian PD Organizations have local and national personalities and officials proclaim April as Parkinsons Month. The Parkinson Society in the UK does the same. More questions: I can answer some of them 1. Is there any reason for this particular day? April 11 is the second saturday in April. There should be some reason for picking such a date...Dr. Parkinson's birthday, first time Ldopa used in human trials, or some other auspicious occasion. The idea would be far easier to sell with a reason for the date. A) Dr. Parkinson's birthday, is the answer 2. This is to be WORLD Parkinson Disease Day. Are foreign PD groups participating? A) Maybe we started it in Canada -- but I think it was the English Society 3. Is this a strictly APDA operation? From the letter I would gather that April 11 was set aside as World Parkinson Disease Day and that APDA is a participant. A) In Newfoundland Canada our first " April is Parkinsons Awareness Month" was proclaimed by the Mayor of St John's, the capital city, in 1988. We plan a month long series of events to promote awareness, understanding and fun Two examples--- 1 We arranged for a neurologist to address a business luncheon club on the topic of Parkinsons. 2 On April 11 our exercise class held a birthday party for Dr Parkinson---Decorations, balloons, prizes, birthday cake, and a rousing chorus of Happy Birthday. A good time was had by all. ++++++++++++++++++++++ Anne Rutherford Editor "Newfoundland Parkinson News" The Parkinson Foundation of Canada St John's Regional Chapter Newfoundland Canada ------------------------------ Date: Mon, 26 Jan 1998 13:44:06 EST From: David Laventhol <[log in to unmask]> Subject: Re: cardiac bypass surgery. to Malibumal thanks for the reply and good ad vice. i will follow up ------------------------------ Date: Mon, 26 Jan 1998 13:46:54 -0500 From: donald mckinley <[log in to unmask]> Subject: Re: Night Shakes At 10:17 AM 1/26/98 -0800, Claudia J. Goldberg wrote: >Richard, > >I am 53 dx. 4 mo ago. Like you, I was surprised when my spouse told me that I >was shaking vigorously during the night also. He described it as being like an >earthquake! >I had no idea it was happening. > >Claudia Goldberg > >53/4 mo. lots of meds > >Richard V. Fisher wrote: > >> According to my wife, I was surprised to hear that I have had 3 or 4 >> episodes of rather violent shaking of my entire body as I sleep. The >> vigorous vibrations do not wake me up but they wake my wife. I am 70 years >> old and in the early stages of PWP, diagnosed about 2 years ago. I believe >> that the shakes are related to PD but I have not heard nor read anything >> about them. Does anyone have information about night shakes? I would >> appreciate hearing about them. >> >> RV Fisher >> >> ................................................................. >> Richard V. Fisher [log in to unmask] >> Geological Sciences (805) 893-3946 (voice) >> University of California (805) 893-2314 (fax) >> Santa Barbara, CA 93106 http://magic.geol.ucsb.edu/~fisher > this is don 73/26 richards i went through that for a bout 3yrs and evry once in while so we bought a large king size bed that can seperated. when tings got bad. she would shake me and hold me in her arms. one night i had killed her. byt is was a heart attact. even after 26yrs i go though it. i am not ashame to armit it. so mabe king bed or twins but stay in the same room. love can do wonders. just for you to know that she is there for you. doese this help you any just let me know. [log in to unmask] lima,oh. ------------------------------ Date: Mon, 26 Jan 1998 13:48:05 -0500 From: Pui_chi Wong <[log in to unmask]> Subject: Re: SYMMETREL unsubsrcibe me now ------------------------------ Date: Mon, 26 Jan 1998 11:18:38 -0800 From: "Claudia J. Goldberg" <[log in to unmask]> Subject: Re: self introduction Howard, First of all welcome to the list. I know you will find it beneficial. I am a "newbie" at PD--having been diagnosed only 4 months ago. I noted that you are taking Neurotonin. You are the first person I've seen that uses it. About a week ago my neuro prescribed it for me with the hope that it would help with my lack of balance. He said it was a "long shot" that it would work. I'm wondering why your dr prescribed it for you and did you notice any side effects? I'm taking the same dosage as you. I understand the med is really for people with severe seizures. I'd really appreciate a response and again WELCOME Claudia Goldberg 53/4 mo. lots of meds! Howard Harrington wrote: > Hi everyone, My name is Howard Harrington. I am 62 y/o married with > twins. a boy and a girl. They are 25 now. We all live in Syracuse NY.I am a > Parkinsonian. Have been diagnosed for 7 years. > Let me tell you my health history. This is a one time shot too. > Until I was 49 I was health in good health. I exercised in the local gym > three times a week and was very careful about my diet. Cholesterol fat etc. > Then when I was 49 y/o I took the family to Washington DC. The second day > I could not walk because of angina pain. The first indication. I tried to > hide it but when we were visiting Ford theater where Lincoln was shot and > died. I had to go get some fresh air. Then I asked to be taken to the > hospital. Spent 14 days in cardiac intensive care and a total of twenty one > days. i recuperated at home. The company doctor and my doctor tried to get > me back to work. There was something else wrong but I could not put my > finger on it. It was that I had difficulty buttoning my shirts. There were > other small things. So I staid home another month. > I kept mentioning things to my cardiologist. The right leg and arm > would be red and the left leg and arm would be pal white. then I started to > get numbness in my legs. Like they were asleep. Then what finally did it was > that when I typed on my computer terminal I used my left hand. I am right > handed. I then went to a neurologist and he diognosed me in seconds. I went > thrugh MIR etc. I was 55 then. > My Pd medication is Cardopa/Levadopa 25/250 6 times a day > Neurontin 400 mg 4 times a day > Parlodel 2.5 mg 4 1/2 times a day > Merapix .25 mg three times a day > > One thing that I had that was very bad was Restless Leg Syndrom RLS. > I was so bad I could not go to the movies. I was even about ready to stop > riding in the car. The Merapex has taken care of my RLS. > I almost forgot . I had quadruple by-pass 2 years ago. That all > folks. My caregiver is after me to get off the PC > I don't know if I am heavly medicatd for PD or not. Onward > Would you belive I am a quite sort of guy. Well If you got this far > you must be a carei ng individuale. I am looking forward to writing to you. > Sharing ideas etc. > Now I said my name is Howard. I use that formally. If you are my > friend you can call me Bud. See you all in the next few days > > Bud a kiss and a hug to all the ladies xo and a warm hand shake to all > the gentlemen ------------------------------ Date: Mon, 26 Jan 1998 11:22:42 -0800 From: "Claudia J. Goldberg" <[log in to unmask]> Subject: Re: Support Groups Murray, What a wise man you are. Your words of advice will surely benefit many more lis members than Virginia. As a new PWP I appreciate the insight of those who have more experience. Thanks again, Claudia Goldberg MURRAY _CHARTERS wrote: > Hi Virginia; > I'm a Parkinsonian who can identify with your letter. I had symptoms > at age 40, was finally diagnosed at age 49 and am 53 now. I too > would like to work until my maximum benefits kick in (at age 60). > > I would like to offer the following to your friend: > > I was not pleased with my first neurologist and tried others until I > was satisfied. I wondered how I would cope and one understanding > dr. advised me that in fact I had already been coping with all my > symptoms for more than a few years. This single conversation gave > me a different perspective and started me managing my Parkinson's > myself instead of looking for others to provide all the answers. > > Parkinson's sneaks in slowly and even though you receive a diagnosis > and suddenly "have Parkinson's" it is just a name to apply to all > your symptoms. Nothing has really changed. Sure your Parkinson's > will eventually progress and of course you will have changes and > adaptations to make but it's not like a heart attack or stroke where > immediate intervention and changes are essential to life itself. > > This means you do have some time to consider and manage these > changes. I work in one of the building trades. I am an elevator / > escalator mechanic. It took a few months for me to decide to tell > people or not tell people. Then I started with all of my family, the > union, my employer, friends, neighbors, and so on. Everyone was > supportive. I still work and I'm relieved that I am not hiding. > > It is very important to find out everything you can about Parkinson's > because you will soon discover we are each unique individuals and > since you will only be seeing your neurologist once in a while you > will need to become the expert on your own case. This expertise will > allow you to manage your PD. and make the vital decisions facing you > with a level of confidence. > > I didn't think I needed a support group but was talked into going to > the Early Onset Group locally to see what it was like. I soon > realized what a nice bunch of people most Parkinsonians are. They > all had something to offer and I realized I did too. I learned from > their experiences; from education meetings; from volunteering for > clinical studies in the Movement Disorder Clinic; from books; the > Internet; and now from this "List". > > My best advice is that keeping busy and keeping a positive attitude > is better than all the drugs known to mankind. Yes, you will need > some drugs too.....but be informed enough to decide yourself (in > consultation with your professional medical practitioner of course) > when to start a regimen of drugs. Be informed and alert to any drug > related positives and negatives and/or side effects so you will be > able to consult and have a role in adjusting medication to suit you! > > Be prepared whenever you meet with your dr. Make a list of your > feelings and your questions and participate actively. Don't leave > until you are satisfied you understand and agree with your > treatment. > > I hope this is of some assistance. > > If you need to ask.... anything goes on this List and someone of us > will surely respond. > > I wish the best for your friends. Murray > . > [log in to unmask] ------------------------------ End of PARKINSN Digest - 25 Jan 1998 to 26 Jan 1998 - Special issue *******************************************************************