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candy
 
 
30 Mar 2002
 
02:54 PM

for brenda or nan i am going to the unity walk. i fly in on the 11th. i am staying with my sister on long island. we will be walking together. hope to meet you in central park. really looking forward to it . i am staying unitl the 16th.


 
Bruce (aka BC)
 
 
29 Mar 2002
 
08:06 AM

Winks, I'm sorry I didn't know you were in the hospital. Glad to hear all is well. Now you know what i's like to be retired. Judy and I wish you continued good health.


 
dan
 
 
28 Mar 2002
 
10:14 PM

PAT--YOU WANT TO TALK??? I HAVE HAD PARK. FOR FIVE PLUS YEARS AND WOULD LIKE TO KNOW WHAT OTHERS ARE DOING. I DO NOT FEEL SORRY FOR MYSELF--I KEEP ACTIVE--GO TO A SPA FOUR DAYS A WEEK FOR WATER WORK OUTS. KEEP UP TO DATE ON WORLD AFFAIRS AND ENJOY B ING ABOUT ANYTHING THAT DISPLEASES ME.MY MIND IS YOUNG BUT MY BODY IS OLD. WHAT DID YOU WANT TO TALK ABOUT??


 
janemartha
 
 
27 Mar 2002
 
12:50 PM

Because of the lack of interest, I've had to cancel the PLWP Banquet, in New York CIty at the Belvedere Hotel. Also, the PLWP discount is no longer available for a room but Iam sure rooms are still available. If you're still considering attending the Unity Walk, please leave a message for Brenda or Nan at the Belvedere Hotel at 212-245-7000, we'ld like to gather together for dinner (restaurant not determined yet). Information about the walk is still posted at PLWP site. Thanks!


 
pat 3yr patient
 
 
26 Mar 2002
 
10:22 AM

would like to chat with other parkinson patients


 
Ypittpat
 
 
25 Mar 2002
 
01:57 AM

Due to a problem with hackers and stalkers We are closing the Palace in order to give Patti a break. I am sure she will still be on the Computer as she wants to Play with the JascPro 7that was bought for her by a friend. She needs a long respite due to the elevation of B/P and anxiety to the point of panicking and her symptoms are increasing. Allow her some time Off and Peace. To get back to her old self again. Those of you that she is close to will still hear now and then. She loves you all! God bless all of you! She strongly recommends PLWP.org. I must let you know that she received a copy of her address book that had been taken off hetr machine through hacking so all that were on her address book be very cautious.She loves you all and hates doing this as she is very attached to all of you. She prays each day for you. God Bless! Howdee the Hubby


 
karen shaw
 
 
22 Mar 2002
 
08:29 AM


 
Tenacity
 
 
20 Mar 2002
 
02:03 PM

Dan, I went to the meeting in Charlotte last night and a couple was there that is starting a group in Statesville, N.C. next week. They are suppose to email me and if you want, you can send me your email address and I'll have them email you with the info. I think that might be closer to you but I'm not sure. tenacitywins@hotmail.com


 
David (drv)
 
 
20 Mar 2002
 
12:31 PM

There are no more books of mine for sale in our site store. The sales of "Amazing Humor, Amazing Grace" have been amazing, and after a reorder, there are only two books left. You may contact me at drv14@yahoo.com if you would be interested in one of these last two books. The price is $15, and I will pay the pastage!


 
DAN
 
 
19 Mar 2002
 
10:50 PM

TENACITY THANK YOU FOR THE IMFO ON PARKINSON MEETING IN CHARLOTTE. AM STILL HOPING I WILL FIND ONE IN HICKORY. I HEARD THERE WAS ONE HERE BUT HAVE BEEN UNABLE TO FIND IT


 
Carolyn (Gunny)
 
 
19 Mar 2002
 
10:11 PM

I received the following email message from one of our members Misty, aka Mrsrosered. Her request is small is you can help it would be appreciated. My sisters grandson has leukemia it is the worst kind. Please ask for prayer for him he is not twelve years old yet. He loves getting mail would you ask for cards to occupy his mind. He may not make it. Here is his address: Eric Lyons Childrens Hospital 700 Childrens Drive Columbus, Ohio 43205 He is in room J 5 I will be very greatful thank you, I know God will hear our prayers. If you can post the address at the PLWP I would be very happy. Cards from all over would cheer him up I'm sure. Hugs, Carolyn


 
Carolyn (Gunny)
 
 
19 Mar 2002
 
10:10 PM

If received the following email message from one of our members Misty, aka Mrsrosered. Her request is small is you can help it would be appreciated. My sisters grandson has leukemia it is the worst kind. Please ask for prayer for him he is not twelve years old yet. He loves getting mail would you ask for cards to occupy his mind. He may not make it. Here is his address: Eric Lyons Childrens Hospital 700 Childrens Drive Columbus, Ohio 43205 He is in room J 5 I will be very greatful thank you, I know God will hear our prayers. If you can post the address at the PLWP I would be very happy. Cards from all over would cheer him up I'm sure. Hugs, Carolyn


 
Tenacity
 
 
19 Mar 2002
 
11:56 AM

Dan, The Parkinson Association of Mecklenburg County's monthly meeting will be held tonight, Tuesday, March 19, at 7:30 p.m. at Community Health Services, 1401 E. 7th Street in Charlotte, N.C. Tenacity


 
LEE ATKINS
 
 
18 Mar 2002
 
01:48 PM

HI


 
dan
 
 
17 Mar 2002
 
06:27 PM

is there a support group in hickory n.c. ???


 
Carolyn (Gunny)
 
 
15 Mar 2002
 
07:58 AM

Dear Ypittypat: I say this with all the warmth and compassion and sincerity I have for another human being, go to your doctors immediately for a check up. Something is not right and I care what happens to you.


 
Ypittypat
 
 
13 Mar 2002
 
12:11 PM

Wanted Manager ASAP Send me a resume with your name one that I will recognize. I need not no your address or phone, I will need your email addy. Then please Tell me why you are interested, what qualifications you have with people. Also what you might have in the way of assistance for these members. Your short term and long term goals. I will let you know by 1st of April. Parkinsonspalace@hotmail.com


 
Ypittypat
 
 
13 Mar 2002
 
12:11 PM

Wanted Manager ASAP Send me a resume with your name one that I will recognize. I need not no your address or phone, I will need your email addy. Then please Tell me why you are interested, what qualifications you have with people. Also what you might have in the way of assistance for these members. Your short term and long term goals. I will let you know by 1st of April. Parkinsonspalace@hotmail.com


 
Ypittypat
 
 
13 Mar 2002
 
12:11 PM

Wanted Manager ASAP Send me a resume with your name one that I will recognize. I need not no your address or phone, I will need your email addy. Then please Tell me why you are interested, what qualifications you have with people. Also what you might have in the way of assistance for these members. Your short term and long term goals. I will let you know by 1st of April. Parkinsonspalace@hotmail.com


 
Ypittypat
 
 
13 Mar 2002
 
12:11 PM

Wanted Manager ASAP Send me a resume with your name one that I will recognize. I need not no your address or phone, I will need your email addy. Then please Tell me why you are interested, what qualifications you have with people. Also what you might have in the way of assistance for these members. Your short term and long term goals. I will let you know by 1st of April. Parkinsonspalace@hotmail.com


 
Ypittypat
 
 
13 Mar 2002
 
12:10 PM

Wanted Manager ASAP Send me a resume with your name one that I will recognize. I need not no your address or phone, I will need our email addy. Then please Tell me why you are interested, what qualifications you have with people. Also what you might have in the way of assistance for these members. Your short term and long term goals. I will let you know by 1st of April. Parkinsonspalace@hotmail.com


 
Trevor
 
 
11 Mar 2002
 
03:33 PM

JUST WONDERING IF ANYONE HAS HAD ANY SUCCESS WITH "CATS CLAW". i'VE BEEN TAKING IT FOR TWO WEEKS NOW AND MY SYMPTOMS SEEM BETTER. I AM A 36 YEAR OLD - DIAGNOSED 4 YEARS AGO. BECAUSE I'M A REG. NURSE AND MY WIFE IS AN M.D., WE'VE BEEN "PROGRAMMED" TO USE TRADITIONAL THERAPIES. ANY INPUT ON THIS WOULD BE GREATLY APPRECIATED. tjonasson@hotmail.com


 
Laurence Buxton
 
 
10 Mar 2002
 
12:49 AM

GOOD MORNING PEOPLE


 
melissa
 
 
08 Mar 2002
 
09:32 PM

hello


 
Carolyn
 
 
08 Mar 2002
 
09:43 AM

Well, I have been in the land of babies for two days now....wowie!!! How quickly I forgot about how little time there is in a day. Currently there is a 4yr standing behind me on this chair wanting www.pbskids.org...now grandma.


 
ATOBarb
 
 
06 Mar 2002
 
09:32 AM

Hello Friends!! I just wanted to tell you I'm alive & well, it was the computer that bit the dust! I missed everybody!! Sure hope everybody is having good days! We are hanging in there, Barb


 
Ryan
 
 
05 Mar 2002
 
12:41 AM

C B C . C A N e w s - F u l l S t o r y : -------------------------------------------------------------------------------- Stem cell guidelines 'strike a delicate balance' WebPosted Mon Mar 4 15:46:27 2002 OTTAWA-- Researchers in Canada will be allowed to work with human embryos as they study stem cells, as long as they follow a set of rules set out on Monday. The Canadian Institutes of Health Research (CIHR) released its guidelines for determining whether any projects involving stem cell research should get public funding. The rules limit where and how researchers can get embryos for use in their research, and what they can do with them. The CIHR guidelines fall between those in place in the United States, where research using human embryos can't be publicly funded, and in Britain, where researchers can clone embryos to use in research. FROM THE MAGAZINE: Stem cell research rules to be released Monday "CIHR's guidelines for Canadian researchers strike a delicate balance between advancing research in this important area while carefully considering the ethical issues inherent in such research," said Dr. Alan Bernstein. Dr. Alan Bernstein Stem cells are something of a holy grail for medical researchers, offering huge potential to treat a range of conditions from severe burns to Alzheimer's and Parkinson's diseases. The cells have the ability to develop into many different types of human tissue. While they can be found in adults, researchers say the most malleable stem cells are those taken from embryos. "One of the more contentious ethical issues with human stem cell research concerns the use of human embryos for research to derive stem cell lines," said Dr. Françoise Baylis, a medical ethicist. "It requires the destruction of human embryos." Under the guidelines announced on Monday, researchers will be allowed public funding for their work with human embryos under the following conditions: the embryos were created for reproductive purposes and are no longer required cloning is prohibited creating embryos solely for research purposes is prohibited the donors of the embryos have given free and informed consent consent must be renewed when embryos actually used there were no commercial transactions involved in creating embryos research on stem cell lines created elsewhere will only be allowed if they were created in accordance with CIHR's guidelines research leading to human cloning would not be allowed combining non-human stem cells with a human embryo or fetus, or human stem cells with non-human embryos is prohibited. CIHR is also planning to establish an oversight committee that will ensure all research is properly reviewed and conforms to the established standards.


 
Ozzirue
 
 
04 Mar 2002
 
07:35 PM

Hi! everyone, My name is Ozzirue and I am from The Land Down Under, in 1998 I was dxd with a rare form of PD called "Hemiparkinsonism Hemi Atrophy" can anybody help me with information on this form of PD and I would like to make contact with others who may also have this form of PD. Hope you can help Regards Evelyn


 
ozzirue
 
 
04 Mar 2002
 
07:30 PM


 
Ozzirue
 
 
04 Mar 2002
 
07:24 PM


 
Bren
 
 
02 Mar 2002
 
10:52 PM

The following is something that is happening in Tennessee. I'm not one who pays a lot of attention to government issues...but that's changing. Please read the following and see if you agree with me that our state government is trying to make budget off the sick and elderly. If you agree with me, please check your own state's legislature to make sure they're not doing this as well. I know that Florida is trying to do something of this nature. Quoted for this url:http://www.ana.net/govt/what/03_01_02.cfm TENNESSEE: There may be a vote next week in the Tennessee General Assembly on a proposal to tax services, including advertising. The proposal, sponsored by Senator Jerry Cooper and Representative Randy Rinks, would raise the sales tax rate from 6% to 7% for three months. On July 1, the rate would fall to 4.25% and be applied to currently untaxed goods and services. The plan is scheduled for a vote in the Senate Finance Committee on Tuesday and the House Finance Committee on Wednesday. Please contact legislators to express your opposition to a tax on advertising. Contact information for the members of the General Assembly is available at www.legislature.state.tn.us. Tennessee has had serious budget problems for the past three years. Service taxes, an income tax and budget cuts are among the options under consideration in the General Assembly. ANA continues to work with member companies and allied industry groups to oppose any advertising tax in Tennessee. If you have any questions or additional information about the tax situation in Florida or Tennessee, please contact Keith Scarborough, Vice President for State Government Relations in ANA's Washington, D.C. office at kscarborough@ana.net or (202) 296-1883. Senate Approps 3.02


 
Dan
 
 
02 Mar 2002
 
04:05 PM

High my name is Dan and I am doing a project on Parkinson's Disease. I was wondering if yo cold answering my questions? 1. Explain how the mediation to stop tremors affects the patients functioning? 2. Explain what Deep Brain Stimulation is and how it actually works for the patient? 3. How does someone have their pigmented neurons in the Substantia Niga degenerated to create Parkinson's Disease? 4. Is Parkinsons' contagious or hereditary? 5. After a period of time can Parkinons' kill the patient and how? 6. How does a patient act aroun you? 7. Do you ever think Parkinsons' will be exterminated?Explain? 8. How can people help the patients with the disease?


 
sunrise
 
 
01 Mar 2002
 
04:51 PM


 
prkane
 
 
28 Feb 2002
 
08:19 AM

March 15 Bay Area Symposium on Parkinson’s Disease Will Reveal Promising Research and Describe Latest Treatments SUNNYVALE, Feb. 22 -- The public will have an opportunity to hear from local experts about the latest research findings and treatments for Parkinson’s disease at a special educational symposium to be held in Santa Clara, CA on March 15, 2002. Researchers and physicians from the Parkinson’s Institute will put into plain language the latest thinking on the causes and treatments for Parkinson’s disease and other movement disorders, and will describe current international efforts aimed at finding potential cures. Attendees will hear from Dr. J. William Langston, Lorraine Zippiroli, and their colleagues on topics including the status of stem cell research, the role of genetic and environmental influences, medications, and a model of family centered care that will help patients and their family members cope with the devastating effects of this disease. Parkinson’s disease and other movement disorders directly affect more than six million people in the United States alone, and the number is growing quickly as the population ages. At the same time, in a disturbing trend, the number of young people, age 40 and under, who are diagnosed with this crippling disease is also expanding. Famous people who are suffering from Parkinson’s disease include Michael J. Fox, Muhammad Ali, Janet Reno, and Pope John Paul. The Parkinson’s Institute symposium will benefit people already diagnosed with Parkinson’s disease and their family members, as well as people experiencing the first signs of tremors or cramped handwriting. In addition, employees of the healthcare and biotech industries, students in nursing, medicine and biological sciences, and community members concerned about public health are encouraged to attend. The symposium will be held on Friday, March 15, 2002 from 10:15 AM to 4:00 PM at the Santa Clara Golf and Tennis Club, David’s Restaurant, 5151 Stars and Stripes Drive, Santa Clara, CA. Registration is $35, which includes a box lunch. To register, contact Janet in the Outreach Department of the Parkinson’s Institute. (408) 542-5644. outreach@parkinsonsinstitute.org The Parkinson’s Institute provides patient care and conducts research into the causes of, and a cure for, Parkinson’s disease and related disorders. The Institute’s physicians and health professionals provide diagnosis and treatment as well as clinical trials and community education at a unique research and treatment center in Sunnyvale, CA. The Parkinson’s Institute 1170 Morse Avenue Sunnyvale, CA 94089-1605 outreach@parkinsonsinstitute.org # # #


 
Nan aka TLC
 
 
28 Feb 2002
 
01:56 AM

Lynda. Didn't have a chance to call and make reservations for the Bridging the Borders. Tom's mom went into the hospital today with heart trouble and is having an angioplasty tomorrow morning.I am sure we will know the results soon. I will try to connect up with you or Jan for reservations tomorrow. Hopefully I will be there. Love Nan


 
Lynda McKenzie
 
 
28 Feb 2002
 
12:15 AM

Brenda and Nan, just wanted you to know that Paul Golding always asks after you two .... he will be thrilled when i tell him you'll be at BTB too! also, al and i have to be in NYC in april...we're hoping to be able to join you in your walk.


 
LYnda McKenzie
 
 
28 Feb 2002
 
12:11 AM


 
Lynda McKenzie
 
 
27 Feb 2002
 
11:51 PM

That's FANTASTIC news, Brenda and Nan!!!!!!!! We're absolutely thrilled that you plan to attend the conference! (BTB that is) We hesitated to put you on the spot because we know how busy you all are and have been, but hearing that we'll have the opportunity to see our old (purely a figure of speech) friends again just made my day! probably even my week! This year's program is better than ever! Just for your interest. .. . ... .our mystery speaker on saturday afternoon has the fascinating topic of sex and PD -questions can be asked anonymously if you're shy - sure to be a hit! and remember to bring swim suits! and of course, please call Jan Carlisle....there's a chance she might still be able to get you a room at the reduced rate.....so call right away while there's still a chance! hurry on March 22, 23, 24th! I can't wait!!


 
Nan aka TLC
 
 
27 Feb 2002
 
01:20 AM

Ryan, Thanks for the reminder.....Bren and I will be there. Bridging the Borders has always been a very worthwhile enlightening experience!! Love ya, Nan


 
Ryan Tripp
 
 
26 Feb 2002
 
08:29 PM

Time is running out. Don't miss this "super special" conference. Best deal in town, if coming from the States, with the present exchange rate!! "Bridging the Borders 2002" - an informative and inspirational weekend conference for people living with Parkinson's Disease at The Radisson Hotel Mississauga, Ontario where you will have the opportunity to experience complimentary treatments such as reiki, therapeutic touch, and reflexology, try out the latest in aquafit and see visible proof of your own personal energy field. D SPEAKERS AND THEIR TOPICS Dr. Dwight Stewart, neurologist specializing in PD will bring us up to date on what's new on the horizon Dr. Jan Boxall, family physician, will tell us how patients and carepartners can get the most out of their family physician, and answer any questions we may have Jan Duff, movement disorder nurse specialist will speak on a variety of topics including how what we eat affects our drugs.(SPECIAL GUEST - EMERIL LIVE will kick things up a notch!) Jan Kun, carepartner extraordinaire, will offer tried and true homespun anecdotes, helpful hints and an understanding ear for those with questions and concerns D We are thrilled to announce our keynote speaker, Mr. Kelly Walker from his bio Kelly is a bilingual author, therapist, storyteller, public speaker and gifted musician. He is also a born teacher, with a commanding, yet gracious presence, who helps people to see the joy and potential in their lives, both professionally and personally. His audiences have acclaimed him as a compassionate healer, a creative, insightful and wise man who is a lot of fun.. . . .. . His first book, "Loss of Soul: Burnout", which captured the story of Kelly's own experience with failing to look after oneself, was first published in 1995 and reprinted by popular demand in 1997. . .. ..... He uses his piano and entertaining skills to get audiences singing along with him, tapping their feet and providing a much-needed respite from the daily grind. His audiences are touched by his special insight as he shines a different coloured light on life . . . . . . Kelly has traveled extensively, spreading his message of balance, optimism and joy to business professionals, health care providers, clergy, teachers and just plain folks who need some inspiration. to find out more about Kelly, visit him at www.kellywalker.com D The facts, just the facts........ or, how you, too, can be a part of Bridging the Borders, 2002! Cost? $120 (Canadian) Includes all meals, refreshments, conference speakers, and activities (except dinner Saturday night) from Friday evening at 6 pm until Sunday at noon. We have some space available for Saturday only participation at a cost of $75. Accommodations? $85 per room per night – Available only until February 20. After that the price goes back to the regular $125 if there are any rooms left. Call the Radisson to book your room ASAP! Call for reservations - 905-858-2424 or 1-800-333-3333 Interested? Register now by contacting Jan Carlisle, 905-826-7444, carlisle.cool@sympatico.ca or Lynda McKenzie, 905-875-1819, lynmck@sympatico.ca We require a deposit of $75 per person before March 1 in order to reserve your spot. hope to see you there! P.S. don't forget your swim suit! from your Bridging the Borders committee, Ryan Tripp, Neil Campbell Jan Carlisle Lynda McKenzie


 
Jim
 
 
26 Feb 2002
 
04:36 PM

Who's here?


 
Jim
 
 
26 Feb 2002
 
04:14 PM


 
candy
 
 
25 Feb 2002
 
06:18 PM

christy thanks for the info, i will check into it. my e-mail is ccarnallg@aol.com candy


 
Christy (ladyhawk26)
 
 
24 Feb 2002
 
10:54 PM

Candy, i have a friend to probably can check with, his name is Larry Paris. He has a website www.wabash valley parkinson support group.com He has helped me with alot of information and he at times goes to Florida. Let me know if you run into any problems getting. My e-mail is christine_cardona@hotmail.com Let me know Christy


 
candy
 
 
24 Feb 2002
 
05:56 PM

can anyone tell me how to find a motion disorder specialist. i live in north florida and i have checked jacksonville and atlanta vis net and can not find any listings. thanks


 
richard
 
 
24 Feb 2002
 
01:00 AM

hey ladies


 
Bren
 
 
22 Feb 2002
 
08:28 AM

I, of course, am not talking about embryonic stem cell research in the following post. I am talking about "CORD BLOOD STEM CELL RESEARCH". Please note this prior to reading the following post. Thanks, Bren


 
Bren
 
 
22 Feb 2002
 
08:24 AM

Jes, I can't tell you how proud I am of Annette. I've known her for sometime as a dynamic, enthusiastic, sometimes a bit rambuncious dedicated mother and wife. If there is the most remote possibility that embryonic stem cells could be the neurological miracle of the 21st century, she will make sure it happens...I have no doubt. Regardless, I hope she realizes that what she is doing will and is helping others. She is an inspiration to all of us. Like our caregivers, Annette has made a conscious effort to care. How can you top that?!! As far as the research itself, yes Jes, IT IS A GREAT TIME TO BE ALIVE. I thank you for your endless efforts, your bottomless pit of ingenuity. There is an energy in the world of research, caring and initiative that is boiling. The scene on the advocacy front is looking more and more like an ant hill with a lot of worker ants due to many efforts but PAN, Parkinson's Action Network, is the organization we will be working more closely with in the future. More to come on that later. I am also impressed with the activity and enthusiasm that is being displayed by the Parkinson's associations we interact with. I won't name names, knowing me, I'll forget someone, but no one is sitting on their backside. As a member of PLWP's Board of Directors, you make us proud Jes. You are one of the true leaders of PLWP. Together we make a difference!


 
jes123
 
 
22 Feb 2002
 
05:50 AM

"full of hope and so very energized…optimistic and incredible" These words only barely scrape the surface of my feelings about the day that I have just experienced! I apologize that I have been remiss in my postings to keep you informed of my activities but things here in the Peoria, IL area have been happening so quickly that I cannot catch my breath. The events of this day must be shared, I feel. On Tuesday afternoon, I picked up Annette Kunce from the airport. Annette is a young mother & wife and although she doesn't have Parkinson's Disease, she is completely involved in People Living With Parkinson's (PLWP). Her donation of the cord blood from the umbilical cord to provide stem cells for PD research from the birth of 16-month-old Jack is the reason for her involvement. When I mentioned to her that the University of Illinois School of Medicine Peoria Campus was interested in cord blood procurement, she immediately made plane reservations to come here and to discuss her "Baby Jack Project," which is her life passion. Today, we had a remarkable day at the School of Medicine. We first met with a medical researcher from the school who has started Peoria's Cord Blood Task Force and a pediatric oncologist who are both very passionate about starting a cord blood bank here in Peoria. While their focus is obtaining stem cells primarily for use in children with leukemia for bone marrow transplants, it was an incredible meeting with lots of sharing of ideas and information. It is so wonderful to hear that others share this extremely viable option to embryonic stem cells and that the future holds so much hope for the use of these cells! It is truly an exciting time to be alive! We then went to a meeting that brought together many of the different organizations that serve the different needs of the neurological disorders that operate independently-until now. This meeting was called by the Dean of Strategic Planning and Development and the purpose of our newly formed committee is to establish a center of excellence at the medical school. There were in attendance, representatives from the MS Society, the Alzheimer's group, the epilepsy group, the Easter Seals group and the MD association and several more that my brain cannot remember. My friend Holly and I were there to represent Parkinson's as well as US Congressman (and fellow PWP) Lane Evans. This meeting was, in my estimation, pivotal in the start and structure of our new goals…to work together to provide patient services, research opportunities, and to be the best damn neurological and movement disorder centers in the country. Representative Lane Evans was inspirational and totally committed to this project. Ah, if we could harness the energy in that room! It is this kind of energy that will ultimately lead us to that elusive "cure" and I am so humbly grateful to be able to play a bit role in the realization of the dreams of a PD-free society. See you at the dance Greg!!


 
Ann
 
 
21 Feb 2002
 
06:18 PM


 
ladyhawk26
 
 
19 Feb 2002
 
11:01 PM

Hello all, does anyone know when the chat room will have people in it? please let me know whoever wants to chat.


 
zach
 
 
19 Feb 2002
 
09:42 PM

i mom


 
Darrell
 
 
15 Feb 2002
 
02:02 AM

This is for Deborah. You say: "It's imossible" God says: All things are possible. (Luke 18:27) You say: "I'm too tired" God says: I will give you rest. (Matthew 11:28-30) You say: "I can't go on" God says: My grace is sufficient (II Corinthians 12:9) You say: "I feel all alone" God says: I will never leave you or forsake you (Hebrews 13:5)


 
Robert "TENACITY'S
 
 
14 Feb 2002
 
02:12 PM

Just to bring you a update on Deborah.. They have cut her sterods down and in tablet form instead of the IV... Her skin has returned to its natual color. She is still pealing and has some small infected area's from the blister's on her body and her lips.. she is still itching very badly and some burning at times, and very week.. We got the MRI report today and it still show's some area of doubt by the doctor but her blood cultures came back neg.. He feels sure that she has licked the staff but not totally positive... He is going to wait for about 2 to 3 wks and have another MRI done and the blood cultures again to make sure... She now has diabeites because of the steriods, but according to the Doctor, that is a normal reaction to the streiods and when they quit them she should be over that as well.. How ever, It is Deborah, so who know's, with the luck she has been having over the last 60 day's it is any one's quess if it will go away.. I just pray to God that it does, because she has enough on her plate with out that. She is in a state of deep depression right now and they have another Doctor seeing her for that.. She just lie's in bed with the blinds closed, lights off and the door closed.. she want even answer the phone at times...They cant give her any medican at this time for her depression for they worry that it will start the alergert reaction over again because she is not over the first one yet Please say a extra prayer for her.. she must get well, I am so very worried for her.. She must come out of it..


 
edelweiss
 
 
12 Feb 2002
 
03:25 PM

Lina - by all means get a second opinion if it will make you feel better. I think most of us had doubts about the diagnosis - I told the neuro that he was crazy and never went back to him. Accepting the diagnosis and then getting all the information you can about Pd is a big part of the battle.


 
RAUL
 
 
12 Feb 2002
 
07:51 AM

Im back after a few months of soul searching, just had to it feel better now. God Bless you all. OJOSAZUL(Lacost)


 
LINA
 
 
09 Feb 2002
 
02:25 PM

I'VE BEEN DIAGNOSED WITH PD LAST AUGUST. I AM STILL NOT QUITE UNDERSTANDING IF IN FACT THIS A CORRECT DIAGNOSIS. HOW DO I REALLY KNOW IF IN FACT THIS IS SO...WHAT SHOULD I BE LOOKING FOR....


 
Ryan Tripp
 
 
08 Feb 2002
 
09:47 PM

Bridging the Borders 2002 an informative and inspirational weekend conference for people living with Parkinson's Disease at The Radisson Hotel Mississauga, Ontario where you will have the opportunity to experience complimentary treatments such as reiki, therapeutic touch, and reflexology, try out the latest in aquafit and see visible proof of your own personal energy field. D SPEAKERS AND THEIR TOPICS Dr. Dwight Stewart, neurologist specializing in PD will bring us up to date on what's new on the horizon Dr. Jan Boxall, family physician, will tell us how patients and carepartners can get the most out of their family physician, and answer any questions we may have Jan Duff, movement disorder nurse specialist will speak on a variety of topics including how what we eat affects our drugs. Jan Kun, carepartner extraordinaire, will offer tried and true homespun anecdotes, helpful hints and an understanding ear for those with questions and concerns D We are thrilled to announce our keynote speaker, Mr. Kelly Walker from his bio Kelly is a bilingual author, therapist, storyteller, public speaker and gifted musician. He is also a born teacher, with a commanding, yet gracious presence, who helps people to see the joy and potential in their lives, both professionally and personally. His audiences have acclaimed him as a compassionate healer, a creative, insightful and wise man who is a lot of fun.. . . .. . His first book, "Loss of Soul: Burnout", which captured the story of Kelly's own experience with failing to look after oneself, was first published in 1995 and reprinted by popular demand in 1997. . .. ..... He uses his piano and entertaining skills to get audiences singing along with him, tapping their feet and providing a much-needed respite from the daily grind. His audiences are touched by his special insight as he shines a different coloured light on life . . . . . . Kelly has traveled extensively, spreading his message of balance, optimism and joy to business professionals, health care providers, clergy, teachers and just plain folks who need some inspiration. to find out more about Kelly, visit him at www.kellywalker.com D The facts, just the facts........ or, how you, too, can be a part of Bridging the Borders, 2002! Cost? $120 (Canadian) Includes all meals, refreshments, conference speakers, and activities (except dinner Saturday night) from Friday evening at 6 pm until Sunday at noon. We have some space available for Saturday only participation at a cost of $75. Accommodations? $85 per room per night – Available only until February 20. After that the price goes back to the regular $125 if there are any rooms left. Call the Radisson to book your room ASAP! Call for reservations - 905-858-2424 or 1-800-333-3333 Interested? Register now by contacting Jan Carlisle, 905-826-7444, carlisle.cool@sympatico.ca or Lynda McKenzie, 905-875-1819, lynmck@sympatico.ca We require a deposit of $75 per person before March 1 in order to reserve your spot. hope to see you there! P.S. don't forget your swim suit! from your Bridging the Borders committee, Ryan Tripp, Neil Campbell Jan Carlisle Lynda McKenzie


 
brooke chance
 
 
08 Feb 2002
 
08:06 PM

hey any hott boys want to chat with 10/f press 123 or im me now


 
paul
 
 
07 Feb 2002
 
05:14 PM

i am new to this site. i have been diagnosed 5 years and am 45 years of age and single. i live in march in cambridshire in england and would like to talk to any single females. e-mail "paul.hensby@eidosnet.co,uk"


 
Ed H
 
 
02 Feb 2002
 
07:14 PM

This is my first time visiting PLWP. I was diagnosed with PD in 1998 at age 61. PD has advanced more quickly than I expected. I don't know any one else with PD so I'm glad to learn that the periods of despair due to fatigue, confusion, loss of balance and loss of dexterity are experienced by others with PD. I've been blessed with a wonderful wife who is very supportive and tolerant (yes - tolerant is the corrct word in my case). The two worst symptoms for me so far are the inability to sleep and chronic constipation. I've learned to live with lack of sleep but the constipation is a never ending struggle. I've been hospitalized twice for bowl obstruction If anyone has a suggestion for the latter please e-mail me at eghaskell@attbi.com


 
Carolyn (Gunny)
 
 
31 Jan 2002
 
07:26 AM

It's snowy and cold and cold and cold here in Michigan so I thought a chuckle might help us all feel a little brighter "INNER STRENGTH" If you can start the day without caffeine or pep pills, If you can be cheerful, ignoring aches and pains, If you can resist complaining and boring people with your troubles, If you can eat the same food everyday and be grateful for it, If you can understand when loved ones are too busy to give you time, If you can overlook people taking things out on you when, through no fault of yours, something goes wrong, If you can take criticism and blame without resentment, If you can face the world without lies and deceit, If you can conquer tension without medical help, If you can relax without liquor, If you can always sleep without the aid of drugs, Then........ You are probably the family dog


 
Kim Pentecost
 
 
27 Jan 2002
 
02:02 PM

Hello I am a Second Year Nursing Student at the University of Windsor in Windsor, Ont Canada. I am doing a research paper on People living with Parkinson's Disease and I need a few people living with Parkinson's to participate in my research. If you would like to help me with my paper you can contact me at k_pentecost@hotmail.com. Thanks!!!


 
jjjane
 
 
25 Jan 2002
 
10:01 PM


 
Stephanie
 
 
25 Jan 2002
 
03:49 PM

Thank you to everyone who sent me an email regarding the paper I am writing. Although I would love to have everyone participate all open spaces have been filled except persons with a nursing diploma/degree. As a reminder my email address is steph_walsh48@yahoo.com. Thankyou


 
Ryan Tripp
 
 
23 Jan 2002
 
10:46 PM

The 3rd Annual “Bridging The Borders Conference” March 22 - 24, 2002 At The Radisson Hotel Mississauga, Ontario An informal and informative weekend for people living with Parkinson's Disease Is there anything new on the horizon? Are we getting close to deciphering the Parkinson riddle? Can my family physician help me with my Parkinson’s? What can family doctors do to help care partners? Why is therapeutic touch being taught to nurses? Can it help? What is Reiki? Aqua exercise anyone? Does massage therapy do more than just feel good? * Our speakers? Dr. Dwight Stewart, neurologist Dr. Jan Boxall, family physician Jan Duff, movement disorder nurse Cost? $120 (Canadian) Includes all meals, refreshments, conference speakers, and activities (except dinner Saturday night) from Friday evening at 6 pm until Sunday at noon. We have some space available for Saturday only participation, at a cost of $75. We require a deposit of $75 per person before March 1 in order to reserve your spot at the Conference. Make cheques payable to B.T.B Parkinson’s Conference. Accommodation? $85 per room per night - Available only until February 22/02. After that date, the room price goes back to the regular $125 if there are any rooms left. Call the Radisson to book your room ASAP! 905-858-2424 or 1-800-333-3333 Interested? Register now by contacting: Jan Carlisle, 905-826-7444, carlisle.cool@sympatico.ca or Lynda McKenzie, 905-875-1819, lynmck@sympatico.ca


 
Tom Berdine
 
 
23 Jan 2002
 
02:36 PM

Please visit http://www.youngparkinsons.com/amazon.htm and forward this to all your friends and family! As an Amazon.com Associate, YoungParkinsons.com earns up to 15% of the sale price on individually linked books that are featured on our site and 5% on anything else that is purchased through our links, including CDs, videos, DVDs, toys, consumer electronics, and more. So if you enter AMAZON.COM using the logo on our site your purchases generate money which we will donate 100% of to the Michael J Fox Foundation. Please send this information to your family and friends.

 


Darrell
21 Jan 2002
01:57 AM

Greg & AJ, Are you at home? Email me @ dbiker2@earthlink.net my dbs is on the 25th and I would like to meet you while I am
there.



Ryan Tripp
20 Jan 2002
09:07 PM

Yes, there is our Annual Bridging The Border's Conference taking place again this year in Toronto (Mississauga) on March 22- 24, at the Mississauga Radisson Hotel. Lynda Mckenzie is putting together the application forms as we speak. Please contact her or JanCarlisle regarding registration at lynmck@sympatico.ca or carlisle.cool@sympatico.ca. We are planning to have a number of session on alternative therapies for Parkinsons. If you wish to reach me about further information; my telephone # is (705) 645-9725 & e-mail is bracebridge_ryan@yahoo.ca ** special rates at the Hotel must be done by Feb. 22nd. and down payment on
conference by March 1st. Please, help spread the word!! See you there!! :) ryan



atobarb
20 Jan 2002
10:46 AM

Good Morning Everybody!!! Hey Bren, it sounds like are on target! Take the one day at a time approach, all of you PDers have amazed me with your energy..Delete that extra stress. We are enjoying the beauty of the new fallen snow. jake against my wishes but after I put his boots on him shovelled the walk. i know it gave him a boost, hang in there!



ypd-mike
20 Jan 2002
01:32 AM

bren and aj, hello. i know how you feel. i to feel empty and use-less..its easy to fall into this parkie trap..its ok it happens to all of us. its ok to say no to things in life. if we don't get to it today theres always tomorrow, and if we don't get to it tomorrow,TOUGH
SHIT! it will be there when i'm good and ready... pd is like living two lifes,one is just dealing with what pd has taken from us,and the
other is trying to keep the real me alive..pd may get the best of me on the outside but it can't get my heart and soul..UP YOURS
PD............. its a place like this that keeps all us fighting...thanks PLWP!!!



ypd-mike
20 Jan 2002
01:28 AM

bren and aj, hello. i know how you feel. i to feel empty and use-less..its easy to fall into this parkie trap..its ok it happens to all of us. its ok to say no to things in life. if we don't get to today theres always tomorrow, and if we don't get to it tomorrow,TOUGH SHIT! it will be there when i'm good and ready... pd is like living two lifes,one is just dealing with what pd has taken from us,and the other is trying to keep the real me alive..pd may get the best of me on the outside but it can't get my heart and soul..UP YOURS PD............. its a place like this that keeps all fighting...thanks PLWP!!!



patti
18 Jan 2002
03:41 PM

dear aj after reading your post i thought id write and say i totally agree with you since i choose now to have days were i just rest and do nothing my outlook on life is so different there is nothing as important asto how we take care of ourselves and enjoy our days the work missed does not go away it will be there when we are ready to tackle it patti



aj
18 Jan 2002
03:13 PM

been feeling way out of the loop since our computers have been acting up...mine is still offline (never ever try and upgrade anything on your computer...just go out and buy a new one--lol)...I think I will have to call in the cavalry. Anyway, I wanted to chime in and say that if I have learned one thing as a Parkie, it is that productivity--as the world defines it--is not everything (some days it is not anything) and that is just fine... The world won't end. In fact, not only do I benefit from not stressing over "productivity," but the people around me don't stress--unless they are stuck on "productivity" rather than living---and the world is relieved of the burden of stress by an almost but not quite insignificant bit. To everything there is a season...to produce and to lie fallow and regain one's strength, energy, peace of mind. We are given one gift with PD: we have to refocus our lives. That is ever a good activity. Conducive to growth and finding what is truly important in life.



patti
18 Jan 2002
09:08 AM

good morning everyone have a wonderful day patti



pwnkle
17 Jan 2002
06:43 AM

Hi CheriLou , if you give me your email address I'd be glad to try to help you.you can reach me at cmcleod@one.net



cheriLou
17 Jan 2002
04:39 AM

hi, testing 1 2 3 don't know if anyone is familiar with webtv i cant get it to help m much in any way of communicating or chatting i
am lost. can anyone plea contact me? -cheryl e.



pwnkle
16 Jan 2002
10:28 AM

Hi Miranda, speaking for myself, the trip to California isa Winter get-away trip to visit friends and family. We're hoping to meet west
coast Parkies along the way, maybe some folks we know by nickname but have never met. I've traveled quite a bit and I find that
there's usually a connection when I meet another Parkie. It's hard to explain but it's a good feeling. So, our trip isn't business - it's
for fun!



miranda
16 Jan 2002
10:04 AM

is California vacation or business? share the details for your homebound readers!



Bren
15 Jan 2002
04:12 AM

I've learned something that seems to be working for me...so, I thought I would share it. In months past, I truly have felt like an old
dirty dishrag. Tried everything but just couldn't get my true "umph" back. Well, about a week ago now, I was what I call "dragging
butt". I didn't feel like a productive, contributing human being...therefore I ceased to be one. On the surface it was a little difficult to
tell but underneath I was an empty shell. I think I've found "my" problem. I've always attested to the fact that stress truly impacts
our symptoms. But until this moment, I really didn't customize my life to meet this need. What I was doing was changing my
lifestyle to accommodate the need rather than changing my mental attitude to accommodate the change in my lifestyle. Are you still
with me? LOL In short, I excused myself for not being productive rather than gain strength from an attitude that I would do all I
could do to make today a GOOD day! It's not in my nature to not be productive, thus stress overwhelms me and I become very
symtomatic. This happens regardless of my permission to be lax or not. BUT, when I do my best to make that one day a GOOD
day, there's no stress because GOOD is relevant. OK, ok...so I'm preaching to the choir. But someone, somewhere out there
needed to hear that. Which brings me to yet another point. Shared sorrows are half the sorrows...shared joys are twice the joys!
Share your successes here to encourage not only those we know are reading us but also the quiet multitudes. So often we get so
bombarded with the negatives of this and other chronic diseases that we don't feel the joy of life itself. Let's bring Spring to PLWP
early this year! When it's cold outside, look to the sky and find the sun...believe me it's there. Perhaps hidden behind the cloud, but
it's there. It's a matter of attitude. As Pollyanna Tucker would say, "every cloud has a silver lining!"



Bren and Nan
14 Jan 2002
11:05 PM

CALIFORNIA, HERE WE COME!! We, along with Carol(pwnkle), have decided to visit the west coast the end of this
month...January 28 - February 10. Currently, we plan to visit San Francisco, Los Angeles and possibly Seattle. We would like to
meet as many of you as we can. Keep in mind we won't have a lot of time. If you would like to email us at plwp2000@yahoo.com,
we would love to hear from you.



patti
14 Jan 2002
04:07 PM

hi to all



patti
14 Jan 2002
04:03 PM

hi to all



patti
14 Jan 2002
04:02 PM



mary
14 Jan 2002
09:16 AM

hi



Sunshine
12 Jan 2002
01:39 AM

Robert, I do not know you but (if you are here I guess I really do know you) I will keep you and Deb in my prayers.......I am sorry
you are both having such a bad time. Thanks to people who care so much ...like ... Nan and Bren we are able to reach out to one
another if only to say.........I am sorry and I hear you....Sun



tina
11 Jan 2002
05:46 PM



CheriLou
10 Jan 2002
10:42 PM

I need some help locating a video that I need to find about housing. It is offered by a male Australian PD'er. and I can't get the
borrowed webtv that I am using to let me search and chat or IM. Please e-mail me at CheriPearl47@webtv.net



Nan aka TLC
10 Jan 2002
05:32 PM

Hello All, Robert just called from the hospital and has asked us to continue to keep Deb in our prayers. Deb is in the process of
having a cat scan because she is having difficulties with communicative responses with the exception of blinking her eyes. We will
keep you posted. Love, Nan and Bren



Nan aka TLC
09 Jan 2002
12:33 PM

Moenorth, I enjoyed talking to you the other day in the MGH chat. I just wanted to say welcome to you! Warmest regards, Nan



bren
08 Jan 2002
12:45 PM

Chechttp://apnews1.iwon.com/article/20020108/D7GTBJPO0.html check this out..



Maureen (moenorth)
07 Jan 2002
12:30 AM

Just heard about this site today. I think it certainly is for me as I first noticed Parkinson's symptoms the winter I turned 39. I will be
61 the end of this month. I live in a small village of about 400 people, (in the winter), 113 miles SE of Whitehorse, YT. Needless to
say, I don't have much interaction with other plwp. I am very fortunate in that I am still able to do much of what I used to do though
there are many problems to be overcome. I always say that if I have to have a neurological problem, better this than Alzheimer's! I
think it is most important to think positively. I am looking forward to talking with everyone.



Bren and Nan
06 Jan 2002
09:59 PM

It's 930PM Sunday night and just talked with Deborah. As soon as there's an operating room available TONIGHT, they are going to
undo and remove everything due to infection. They've told her that she will be on IV antibiotics for at least 6 weeks. Robert is
having a difficult time ...they have no family there. We told her we would all be praying for her. We'll post whatever we hear as we
hear it. Love and hope, Nan and Bren



Bren and Nan
06 Jan 2002
03:07 PM

Deborah Setzer was taken to the emergency room this morning. Having severe head pain and very high fever. As most of you know,
she had a DBS on December 21st. Her surgeon is keeping her in the hospital...blood work is a little off..will be giving her steroids
and antibiotics tonight. Will check bloodwork tomorrow....if worse, will remove tube and reinstall it in a few weeks. Doc said this
could just be swelling or it could beencephalitis. Robert called and relayed Deborahs request for prayers. She's really concerned.



Patty
03 Jan 2002
04:45 PM

Hi Everyone, I have not yet had my neurologist's diagnosis cnfirmed by the doctor who specializes in Parkinsons - but my
neurologist suspects Parkinsons. The main symptoms I am experiencing are with my writing and my speech. Has anyone else had
these smptons in the early days? Any input would be very much appreciated. Thanks.



John Ball
03 Jan 2002
11:26 AM

Just wanted to say hi and wish everyone a Happy New Year. Let's look forward to a productive year of progress and productivity
on the search for a cure. John



pwnkle
01 Jan 2002
12:08 AM

Happy Happy New Year guys!



chosh
01 Jan 2002
12:06 AM

Happy New Year



ATOBarb
31 Dec 2001
09:23 PM

We wish all of our friends at PLWP only the best for the New Year! This wish is filled with enough Hugs to get you through the
day! Barb & Jake



ATOBarb
31 Dec 2001
09:22 PM

We wish all of our friends at PLWP only the best for the New Year! This wish is filled with enough Hugs to get you through the
day! Barb & Jake



Robert
31 Dec 2001
08:33 AM

To my Wonderful and Adoring wife, My love is with out question and the return from you is incredable. I still remember that
question my friends all asked. "Why would you get involved with some one who has pd and who might pass away in near future"
And my reply was. "What she gives me is so superior to any one I have know in the pass that if we only have 1 or 2 years togather,
that is fine with me" Neither of us knew than that your pd-msa would take you down so fast. And as I have told you so many times
" I would not trade you in for the Healtyist women in the world" Well, I still would'nt and not only that but now, thanks to Dr.
Tatter, We have more time and quality far exceeding our wildest imagination... And you even have me back in Gods fold.... To all
you care givers, I personally know your plight and have a great deal of empathy for all your understanding,care and love you give
your mate... God bless each and every one of you, After all, they may have the disease but in reality, so do we.. We live it every day
and every hour.. I wish to say a Happy New Year to My wife,Tenacity and to all of you. To day is the first day of the rest of your
life..... ROBERT.......TENACITYS MAN



roberet
31 Dec 2001
08:32 AM



cherilou2
28 Dec 2001
03:22 AM

i made a mistake in my webtv e-mail number. it is 47 not 48 and every day counts ha ha! sorry the number should read
cheripearl47@webtv.net



cherilou2
28 Dec 2001
02:49 AM

hi, i need all your help. i need to find a place to live and a part time caregiver. i am out of my temp residences and am asked to be
out by end of year. what i would like to find is a residence with other pd'ers who can help and befriend me like i can do for them
and location is workable..anywhere. i am ready and packed to move. any input or help would be greatly appreciated. contact me at
cheripearl48@webtv.net thanks from cheryl



leo
27 Dec 2001
09:44 AM



leoo
27 Dec 2001
09:44 AM



hurl
27 Dec 2001
03:49 AM

Hello.



David (drv14)
24 Dec 2001
06:20 AM

Visit my web pages listed in our PLPW homepages. I am asking us to imagine that we have the abilities to give anything we could as
a present this year to our loved ones and/or to the world. If we had this ability what three gifts would we give this Christmas? I will
report after Christmas the results of our survey. Thannks!



Bella
24 Dec 2001
04:16 AM

http://www.clubs.yahoo.com/clubs/plwp2 Don't forget to-night, 7.30pm eastern, come to PLWP2, html above, for Carolling with
Carepartners, be there or be square. Everyone is welcome!! The Carepartner Team @ PLWP



Carolyn (Gunny)
22 Dec 2001
07:42 PM

A heart warming Christmas story follows. It was the day after Christmas at a church in San Francisco. The Pastor of the church
was looking over the cradle when he noticed that the baby Jesus was missing from among the figures. Immediately he turned and
went outside and saw a little boy with a red wagon and in the wagon was the figure of the little infant, Jesus. So he walked up to the
boy and said, "Well, where did you get Him, my fine friend?" The little boy replied, "I got him from the church." "And why did you
take him?" The boy said, "Well, about a week before Christmas I prayed to the little Lord Jesus and I told him if he would bring me
a red wagon for Christmas I would give him a ride around the block in it. ~~~~~ Happy Holidays ~~~~~ JOY BE WITH YOU
ALWAYS AND PEACE BE IN YOUR HEART



Carolyn (Gunny)
22 Dec 2001
04:39 PM

Well it's 4:30 and Deb just called me from her cell phone on the way home. She's in great spirits and I wished her the very best
Christmas on behalf of all the PLWP family. She can finally sleep without all the pain and was ecstatic. She has had 2 seizures but
that is to be expected. As long as the seizures don't go beyond a half hour they told Robert not to worry. We can view the pictures
of the surgery through her web site. Oh, and by the way the doctor that performed the surgery was the first to sign her head. Always
thinking of other people, Deb told the doctor that he was scaring the other patients when they were putting the halo on and one poor
woman looked very frightened. That's our Tenacity. Caring about everyone else. Glad to hear Carol and Deb's surgery went well. If
I hear any more new, I'll post again. Oh the power of prayer and faith, hope and love.



Bren
22 Dec 2001
08:57 AM

This was on the Parkinson's MGH Forum!! Like the man said...."What a good idea"!
http://www.biocompare.com/news.asp?id=3609



sharilynn
21 Dec 2001
01:54 PM

i don't know the two brave female members of plwp but i have been watching the posts the past few days and the good news on
both counts are the best gifts i could have received this christmas. like brenda says We Are Family - and it is a joyous and
wonderful feeling to have such a strong and supportive family. The best of the season to all. Shari Weaver



Bren
21 Dec 2001
12:44 PM

What a wonderful Christmas this is turning out to be! Let the success stories from Carol (TexRose) and Deborah (Tenacitywins)
give you the gift of hope for Christmas. I know there is much hurt and need out there amongst us but if at all possible grab on to the
HOPE...it will keep you afloat. I personally thank these two women for sharing with me their challenges. My life is touched everyday
by one of you, whether you are aware of it or not. I read the site on a daily basis, everything from conversations in chat to the
wonderful Journals. Each of you, like Deb and Carol, share your fears and your triumps with me as you do with each other. Your
lives strengthen me...your courage wards off my fears...your perseverance keeps me forging ahead and your love keeps me warm.
Thank you family for the best of gifts...thank you for being PLWP. I wish for each of you the Joy that Christmas brings. Together
we make a difference. Bren



Tenacity
20 Dec 2001
07:35 AM

Good morning, It feels surreal! I'm a shaking and quaking. Nerves arebeginning to set in. I want to thank you for your support and
prayers for both myself and my wonderful husband, Robert. I don't know what else to say at this point but I love ya'll very much.
Tenacity But for the Grace of God, Go I!



Bren
20 Dec 2001
03:09 AM

UPDATES ON OUR RECENT HEROES.... Just wanted to make sure everyone heard the news about Texrose (Carol Stainoff).
She's at home, they did their best to find cancer cells but COULD NOT FIND A ONE! From my perception of what she shared
with me last night...I think our girl is cancer free!!!! Thank God! What a Christmas gift!!! As for Tenacity (Deborah Setzer), she's
just as pretty without hair as she is with it. See what I mean at http://community.webshots.com/user/tenacitywins Deborah enters the
hospital on Thursday (today) and has the surgery on Friday. The Wake Forrest Hospital is trying to get a professional to tape the
entire surgery for the media and for Deb to share with us. Deborah is another Joan Snyder...she has called government officials,
media, doctors, hospitals, corporations...you name it, she's somehow "reached out and touched" them. We have no doubt that her
efforts will make a difference for all of us. Members: Be sure to look over the email we sent you last week. It contained info for
doing your thing locally to help Deb and Roberts effort. Together we make a difference, Bren



Darcy
19 Dec 2001
11:39 PM

Hello everyone, I don't have PD, but a friend that I care very much for does. He was just recently diagnosed and is very angry. I'm
wanting someone to talk to that can help me help him. So could you please e-mail me at d_bezugley@hotmail.com Looking forward
to hearing from someone Bye for now!



Darcy
19 Dec 2001
11:06 PM

Hello everyone, I don't have PD, but a friend that I care very much for does. He was just recently diagnosed and is angry. So
looking for someone to help me understand him, and what to do to help. So please e-mail me at d_bezugley@hotmail.com Looking
forward to hearing from someone Bye for now!!



Carolyn (Gunny)
19 Dec 2001
11:50 AM

Juanita I know as well as many others what you mean when you say, its a relief to know that you finally have a name to attach to
your illness and that you can live with Parkinsons. Yes, there is life after diagnosis. I hope you have a very slow progressing form of
PD. I experienced the beginning of very mild symptoms in my thirties. It wasnt till I turned 42 that the dystonia began. Now 7 years
later things get pretty rough sometimes. But there are those that have it worse than I, so I am fortunate. And you are fortunate to
have found PLWP, its like a well in the desert that refresheds the heart and soul. Join us on Sandy's porch too where you'll meet
more great folks. Just use the sidebar on the main page to take you there. I'd be happy to chat any time or email me at
gunnyswife68@yahoo.com or cgambino72@hotmail.com God bless, talk with you soon. (I hope to wear high heels again when they
find a cure)



Hermil
18 Dec 2001
03:00 PM

I've had PD for 3 years now (I am 41)... my issues: 1. Why doesn't the Salvation Army recruit us to ring the bell for Christmas
Donations this time of year? 2. Should I tell the guy who's planning to hire me for a visible sales position that I have PD before he
hires me? 3. Does anybody know any good play parts that a PD can take on (I've been cast for the roles of the Cowardly Lion -- he
shakes from fear -- and the role of Richard III, replacing PD for the humpback malady he is usually portrayed with). I need to act!
Hermil



juanita
17 Dec 2001
04:29 PM

Hi all, I am new here, and I would like to say how wonderful this site is. I am 38 years young and after 4 years of doctoring I have
been diagnosed with parkinsonism. It comes with relief, I know it is not cancer, etc. It could be so much worse!! And I thank God
for that. I am in the early stages of this and sometimes I forget I have it and I cannot imagine myself getting worse, denial? I don't
think so, I just can't see that happening. Anyways it is nice to know that this website is here And David-- I checked out your web
site also, WONDERFUL!!! Thanks all!!



David (drv14)
16 Dec 2001
08:03 AM

"The angel said to them,'I bring you good news to great joy which will be for all the people. Today in the city of David a Savior has
been born to you; he is Christ the Lord.'" (Luke 2:10) May each of us have good news today and in the coming days. May the Lord
of Christmas and of life grant us all healings of body, emotions, and spirit. And may "good news" be what those of us who are
facing surgery will receive.



David (drv14)
16 Dec 2001
07:58 AM



Bren
15 Dec 2001
09:19 AM

PLWP Membership, I woke up this morning remembering the meeting we had last night. I just want to share a few insights with you.
We have over 500 members now...many whom we don't know or haven't had the opportunity to meet as yet. I want all of you to
know that there are people working for you!! PLWP is People Living With Parkinson's. Many of the Team Leaders at the meeting
felt the burden of PD weighing heavily on their shoulders but bucked up and gave there input on how we make PLWP more active
and more of a catalyst to making a difference. How to help PLWP help all of us. The Team Leaders are the leadership of this
community. Nan and I were so proud to sit back and watch our family work in unison. Like any family there will be disagreements
but that's what makes for success. Last night the chat room was of many bodies but only one heart and mind. They were working
together in unity. You too can become an active participant in PLWP. It's such a challenge and such a joy. The Team Leaders will
be more and more visible to the membership and they need more members on their respective teams. Don't wait for an engraved
invitation, jump on board. The email we just sent the membership regarding a press release and one of our members grand stand for
public awareness is a good place to start. Together we make a difference, Bren



pwnkle
15 Dec 2001
08:23 AM

Tenacity I can't think of any reason why anyone would think you a 'clown' or misconstrue your purpose. I can only speak for
myself, but I appreciate what you're doing and your desire to help others. I think promoting Parkinsons awareness not only
increases our fundraising capabilities, it also can teach the unknowing public that people with Parkinsons are deserving of respect.
That's something we sometimes find in short supply. Thank you for all you're doing to help yourself and others.



Tenacity
15 Dec 2001
07:16 AM

I have been worried that people would misconstrue my purpose for asking everyone’s help. For that reason, I am taking the time to
explain what I have done and why. I was feeling helpless and that feeling was uncomfortable. I felt helpless that I couldn’t do
anything to help my PD family. This disease is cruel in all that it takes from us so unmercifully. When I was a counselor, I always
told my clients that anything is possible as long as 1. you put one foot in front of the other 2. you have a goal that “does no harm”
to others 3. You are prepared to accept the consequence and/or pay the price for the choices you make. My friends with PD are
suffering as am I. I know that I have turned this DBS surgery into a circus but heck, circuses draw crowds and with those crowds
come a possibility of people listening and the possibility that there is that one elusive person that could make a difference for many
of us. When I decided to do this, I had to face the fact that there would be some people who would think that I am trying to
promote “ME” and that I would get shunned by some of the people that I called “friend.” But, if I were to do it all over again, I
would do the same thing. The general public needs to put a “face” to this disease. They need more than the 4 or 5 celebrities that
have it. They need to see the “nobodies,” as I have been called by one reporter when questioned about why they should use this
story. PD needs to become real in their minds. They need to stare PD/MSA right in the face and fear that it could be them some
day. They need to hear the stories that each one of us has to tell about what this disease is and what it has done to us. And this
“circus” of mine is being done just for that purpose, to raise awareness. If being a clown will get folks in the general public to take
notice and get off their lazy butts and help, then a clown I will be. PLWP needs our help to raise awareness! That is the bottom line.
Any donations received from this event will go to help our fellow PD brothers and sisters through PLWP while adhering to its
predefined guidelines. I need the members of PLWP to make noise with me. Each of you have a story to tell… be silent no more…
call the media, (I have given you my pride on a platter), take advantage of it. Use me to get your story told in your communities to
your media and politicians. As Brenda would say, Bang Your Own Drum. By doing this, you would not only be helping PLWP but
helping yourself. Well, enough venting. Now to tell you what has been done. I have been told the following is going to happen. I
pray that each of these promises are kept. The Charlotte Observer is coming to my house on Monday to interview me and take
photos. On Wednesday, NBC affiliate channel 6 and the Observer and Associated Press will be filming and photographing me
getting my head shaved. Also, the first article about this event will be published in the Times of Acadiana. The day of my surgery, a
woman from the Charlotte Observer will be present during the operation taking photos. On Dec. 26th, the Times of Acadiana will be
publishing the second article about this event. When the doctor gives the thumbs up for autographs, all of the above and the
Lafayette Daily Advertiser… and I hope more, will start publishing what I am doing for us (PLWP). Associated Press will then
make a nation wide release that will go over the teletype machines in every radio station, television station and newspaper in the US
that subscribes to their service. Oh, I almost forgot, the local post office has put the press release on their bulletin board and will be
accepting donations for PLWP for this event. Please say some prayers that none of these folks back out or change their minds.
Please help me help PLWP and you. If you make the phone calls, tell your story, put that seed of “hummm” in their heads, when the
press release hits the AP wire, the media will be more likely to use this story as well as your story in your area. The more territory
we cover, the more response we get, the greater the awareness and the greater the benefits that become available for PLWP. I am
but one small voice alone and it is so true that only “together” can we make a difference. Last but not least, I want to thank Nan and
Brenda for all of their support and hard work and for letting me be a part of their dream. I also want to thank each of you that has
stood by me and accepted me just as I am. It is for each of you that I am doing this. Letters and donations from the general public
can be sent to: PLWP or Deborah Setzer at P.O. Box 5100, Lake Wylie, S.C. 29710 or PLWP P.O. Box 25310, Rochester, NY
14625-0310 Email from the general public can be sent to: tenacitywins@mail.com and/or PLWP2000@yahoo.com I set up a
separate email address for the general public. My PD family can continue to email me at the same old address…
tenacitywins2@yahoo.com Together we can make a difference. Deborah Setzer Aka Tenacity Wins But for the Grace of God, Go
I!



aksgrand
13 Dec 2001
10:50 AM



David Moreland
12 Dec 2001
11:52 AM

I am not really into chat Rooms. I hqave had PD for 14 years. I am 58 years of age. And I am still in love with the sweetheart of my
youth. this next june we will cellibrate 38 of marriage. We have 5 adult offspring We live in Walla Walla WA.



Bren
11 Dec 2001
02:14 PM

David, this is very special and it exemplifies what PLWP is all about. I know by what you said what we have experience how very
special it is to know that you have helped some one. Fellow members, this is something each of you can feel and many many of you
know the feeling . Today or tomorrow, you will receive a huge email from Nan and I. Please give it your thoughtful consideration
and follow your heart. We love you David, we love you all. Bren and Nan



David Vaughn (drv14)
11 Dec 2001
06:54 AM

Just want to share something within my heart....I live in an area of East Tennessee that has been void of any organized
fellowship/support group for Parkinson's patients. Through much prayer and support from God, through great publicity my the
media in my area, and through hard work by a team of wonderful people, we started a Parkinson Support Group in the Morristown,
TN area on August 17. We have 20 very active members. At our Christmas dinner and program, so many persons stood, with tears
in their eyes, and expressed thanks that there was now a place where they could be with friends who share their problems and offer
love. I am thankful for local support groups, and I am thankful for PLWP! You have helped me more than you will ever realize.
Thanks! David



Tim
10 Dec 2001
10:00 AM

Team Leaders meeting Friday, December 14 at 8:00pm EST PLWP Team room at Yahoo The PLWP Team meeting room is where
we had our last team meeting. Please make sure that you have it on your list of rooms to enter. The address is
http://clubs.yahoo.com/clubs/plwpteam Please check today that you can get into the room. If you can not, notify me at once with
your yahoo id and email address that you use on yahoo so that you can be allowed admission. It is not PLWP2. Please let me know
if there is a subject you would like to address or if you would like to be included in the agenda.
-------------------------------------------------------------------------------- We are working on new chat rooms - please be patient as Yahoo is
the only voice chat available to us as of yet. -------------------------------------------------------------------------------- There will also be a
meeting for the following teams this week in PLWP2. These are meetings with Bren and Nan. Wed, Dec 12th, 8PM EST - The
Resource Team Thurs, Dec 13th, 8pm EST - The Grant Team I am scheduling individual team meetings with Nan and Bren. I will
also be in attendance. Any questions please contact me. Tim God's greatest gift to us is the gift of life, how we use it is our gift to
Him - Mother Theresa PLWP - www.plwp.org MSA Info and My Story - http://msainfo.tripod.com



Raul
09 Dec 2001
11:53 AM

I just wanted to wish all associated with this site a Happy & safe holiday season. Don't ever give up hope. I know their are days that
we feel like giving up, "don't ever give up". When I am in one of those dilemmas, I just talk with the Lord and ask for his support &
grace. He is always there. Keep the Faith & God Bless you all. Take care Raul(Lacost26)



ryan
08 Dec 2001
05:26 PM

REMINDER!! It is your final few hours to register with me for the "love bug" activity. The deadline is tonight at midnight. I expect
to e-mail all participants, the name of whom you are to bug and the bugger that will be bugging you, by tomorrow evening. After
that, go for it! So, "LAST CALL!" :) ryan



shirin
07 Dec 2001
11:32 AM

Thanks Ryan for the Anti virus computer trick.



Bren
07 Dec 2001
11:00 AM

Charlie's mailing address if you want to send a card is Motion Picture Hospital, Room 305, 23388 Mulholland Drive,Woodland
Hills, CA 91364 We do have his number. Just ask and ye shall receive. Together we make a difference.



Bren
07 Dec 2001
09:56 AM

I just this minute got off the phone with Charlie (940AM Friday). He is in Acute Care and has been told he'll be there for 5 to 7
days. They have him on hefrin (sp?) drip. He has blood clots all the way up his leg to his groin. They are concerned. His DBS has
been postponed again. I don't know the name of the hospital...he didn't know or was to drousy to think. As soon as we know more,
will post it here. There's also a thread in the MGH PLWP. He wanted to be sure his PLWP family knew. If you want his number, I
do have that. Please pray for our brother. Love and hope, Bren



Nan aka TLC
06 Dec 2001
09:55 AM

Holidays are near and I began to think about all the different ways that it is celebrated around the world. We all have traditions based
on where we live and ones that we have established within our families. It might be fun and interesting to tell each other about some.
My father was the one who had the spirit of Christmas in our house. He truly loved the preparation, decorating but mostly the
music. We would listen to all the traditional Christmas albums like Bing Crosby, Perry Como, etc but there was one he truly loved.
It was called Christmas with Eddy Arnold. None of my other friends seemed familiar with this album but everyone in our house
could sing it verbatim because of Dad. This tradition has been passed down to my children as well. This Christmas my daughter is
away at College and she asked for a copy of Christmas with Eddie Arnold. We sent it to her and now all her roomates are singing
along with Eddy and wishing all a very Merry Christmas. Christmas can't be far away...what's your tradition? Much Love, Nan



CANDY
05 Dec 2001
05:47 PM

TENACITY YOU ARE MY HERO. THE STRENGHT THAT YOU HAVE IS AMAZING. I HAVE BEEN A RN FOR 26
YEARS, YOUR POSITIVE IS A MUST FOR YOUR SURGURY AND RECOVERY. MY PRAYER ARE WITH YOU. KEEP
FIGHTING. YOU ARE AN AMAZING WOMEN.



ryan
05 Dec 2001
04:37 PM

REMINDER!! You only have until Sat. to sign up for the " love bug" activity. Scroll down to find out the details. Come one...come
all. Help someone and yourself thru those Dec. blues. :) ryan



jes123
05 Dec 2001
08:06 AM

Yesterday, on the Oprah show, it was about the disgraceful way that afghani women have been treated since the taliban took
over…and my heart broke. This morning at 4 am, I watched the refugees in Pakistan suffer;freezing and starving…and my heart
broke. Then, my reality took over-had to get the husband off to work and get the kids up and ready and out the door for school.
After that is all finished ("Mom-I can't find my shoes," "Will you make me a pb&j sandwich-I need it like NOW!!," "Mom-I'm not
riding the bus and carrying on this wimpy-looking Christmas present for my teacher-will you call & find me a ride?"), I usually feel
as if it is me who has fought the war. But this morning, as I went around the house, turning off every light that they inevitably leave
burning, I stopped and looked at our beautiful Christmas tree and all of our decorations and was struck nearly immobile as feelings
of gratitude washed over me. As a Jackie De Shannon song ran thru my brain, I considered what I had indeed: * A husband who
loves and stays with me through the tough times * 2 beautiful, healthy, loving albeit ornery kids who love me no matter what * My
sainted mother, an incredible network of friends both with and without PD who drop everything to lend a hand when I need
help-which is often these days & whom I love * The opportunity to do & accomplish things which I would never have thought
possible before PD * My faith in God which has been tested by trials & tribulations during my time with PD and which has become
stronger… and so many things that my heart nearly burst to over-flowing. And the song that kept tripping through my mind was an
old Jackie De Shannon song: "Put a Little Love In Your Heart." For those of you unfamiliar with this oldie but goodie, the lyrics are:
Think of your fellow man, Lend him a helping hand... Put a little love in your heart You see it's getting late, Oh please don't
hesitate… Put a little love in your heart And the world will be a better place for you and me… You just wait and see Another day
goes by And still the children cry… Put a little love in your heart You want the world to know we won't let hatred grow… Put a little
love in your heart Take a good look around And if you're feeling down… Put a little love in your heart I hope when you decide
Kindness will be your guide… Put a little love in your heart And the world will be a better place For you and me… Please just wait
and see! Now, I'm afraid that there is not much that I can do to help the women of Afganistan nor the people suffering in the refugee
camps. But I have to believe that I am capable of changing my little corner of the world and this I have been trying to do by
establishing a small shop within a shop called JITTERBUG! Our store is located inside Happy Thoughts Coffee Shop, The Vault
gift shop & World Class Travel Agency. All 3 established businesses are owned by Sarah Williamson and are located in the old
downtown bank in Chillicothe. Sarah has generously offered to lend to PLWP as much space as we need or can fill up with crafts
and things made by PLWP's or their caregivers. We have CD's from Jim & Donna Newton; beautiful grapevine, floral wreathes, and
gorgeous baskets and ornaments made by Laura (Harley) Dean; darling hand crocheted ornaments from Carol (Caz) Post and sweet
macaroni angels from Michael (mleo) Koontz. We expect a shipment this week of Joel (blwshawk) Bell's intricate, hand-crafted
boxes. Then there is the wonderfully whimsical artwork and crafting of Holly Angus who decorates anything she gets her hands on:
gift boxes, cups, flower pots, cups, vests all become works of art once she touches them! Holly is also the brains and the real talent
behind this entire operation-she even thought of the name JITTERBUG! And a newly diagnosed woman in Chillicothe (a friend of a
friend) just brought us some of her pretty crafts! So if you are at all handy and have anything that you make or craft anything that
might be considered "sale-able" and you would like the profits to go to PLWP, by all means, PLEASE, PLEASE contact me so
you too can become part of the JITTERBUG experience! <snyder201@home.com>



ryan
04 Dec 2001
06:02 PM

> Subject: ( An Anti-Virus Computer Trick Worth Knowing ) > >I learned a computer trick that's ingenious in its simplicity and
wonderful in the headaches it can prevent. Plus it is satisfying to find an elegant way to subvert nastiness, so I am taking the liberty
of sharing it. As you may know, when/if a worm virus gets into your computer it heads straight for your email address book and
sends itself to everyone in there, thus infecting all your friends and associates. And it is almost impossible, even with the best virus
protection software, to stay so updated that you are 100% protected from the latest mischief of an adolescent flexing his
cybermuscles. > > > While this trick can't keep the worm from getting into your computer, it will stop it from using your address
book to spread itself further (all this is assuming you keep an e-mail address book), and it will alert you to the fact that the worm has
gotten into your system. > > > Here's what you do: > > > Open your address book and click on "new contact" just as you would
do if you were adding a new friend to your list of email addresses. > > > In the window where you would type your friend's first
name, type in 000_ (that's 3 zeroes followed by an underline). > > > In the window below where it prompts you to enter the new
email address, type in 1AAWormAlert@alert.com (even if it tells you this is not a valid address, just say yes to add it, or OK.) > >
> Then complete everything by clicking add, enter, OK, etc. > > > Now, here's what you've done and why it works: the "name"
000_ will be placed at the top of your address book as entry #1 virtually any way you have the list sorted. This will be where the
worm will start in an effort to send itself to all your friends. > > > But when it tries to send itself to 000_, it will be undeliverable
because of the phony email address you entered (1AAWormAlert). If the first attempt fails (which it will because of the phony
address), the worm goes no further and your friends will not be infected. A caveat: some worms send mail to all of your recent
contacts rather than your address book, and this will not help with those, so keep updating your virus protection software regularly.
> > > The second advantage of this method is that if an email cannot be delivered, you will be notified of this in your In-Box almost
immediately. Hence, if you ever get an email telling you that an email addressed to 1AAWormAlert could not be delivered, you
know right away that you have the worm virus in your system. You can then take steps to get rid of it! Pass it on.... > > > Hope this
is useful.



ryan
04 Dec 2001
05:50 PM

"here..here.. Peg!" ditto to your comments and support for the 3 Amigos! We are with you 150%. Three successful ops, the best
Christmas gift ever! God bless. :) ryan



tnpeg aka pegleg
04 Dec 2001
10:12 AM

Oh yes, Tenacity! You and Charlie Black, Darrell Baker, and anyone else undergoing surgery this time of year have my prayers and
concern. I'm sure that I speak for all of PLWP when I say, "We love you!" Peg



tnpeg aka pegleg
04 Dec 2001
10:11 AM

Hi PLWPer's! I hope everyone has put at least one sparkling, bright holiday decoration up! The "brightness or light" is our
symbollic reminder that there is hope! I'm going to now make a little advertisement. PLEASE note that you can copy some the info
at this site and distribute to your family and/or friends about helping find a cure - if not for yourselves, for those who follow us. I
don't know about YOU, but I want to make a difference! Here goes: You know, money talks! So we must do what we can to get
those funds rolling in for research. PLWP has been my constant support of friends greater than gold, so don't neglect their support
either. There are some Christmas gifts you can purchase that will help support the cause and get the word out about Parkinson's. I
suggest you consider purchasing the book by member David Vaughnm "Amazing Humor - Amazing Grace." It's a little book that
has both PD and non-PD stories and devotionals that anyone would enjoy! And please take advantage of Figgy's CD "Hope for a
Cure." It's fabulous music and a great way to donate to research for neurological illnesses. And although the PLWP cookbooks
aren't available just yet, you can send a little card saying it'll be mailed as soon as the ink dries! I also know that Lynda McKenzie
(mischef) usually has some great Christmas cards (originally designed) available. Again, we do NOT want to milk our own
membership dry, but if you're buying gifts any way, why not give a gift that has a dual purpose? Happy Holidays!



Tenacity
04 Dec 2001
09:52 AM

For those of you who have been following this saga otherwise known as my life…. Here is the next installment. My diagnosis
remains that of MSA (multiple systems atrophy) but it does so with a new twist. My neurosurgeon said that my symptoms most
resemble that of MSA but even that does not quite explain what I have. I have a non-defined Parkinsonian Syndrome and he has
seen atypical folks like me live twenty years. The death sentence has temporarily been put on hold. Though he cannot say for certain
how I will progress, he can provide me with hope that I may indeed be one of those lucky ones. I have been turned down for a DBS
by more than one neurosurgeon in the past year. I have letters written from several experts stating their sorrow in my having MSA
and their regret that something could not be done surgically for this disease. I have been sent to psychiatrists for my “depression”
and my “atypical” features. I have been questioned by the best of neuro’s about so-called “mental disorders” since my symptoms
did not fit easily into a Parkie shopping bag and because I have continued to seek “yet another opinion.” I have had family tell me
that it was my meds that was making me sick. I have been kicked in just about every form and fashion of the word. Somatoform
disorder, malingering, bipolar disorder, ….. heck, she just loves ill health… she must just want to be sick and get all of the attention,
please continue to fill in the blank with lines that you have heard when it comes to you and your battle with Parkinson’s disease. I
have heard and lived through just about everything that could be said about me and this disease. Depression… wow, have I
experienced depression. I have said to more than one person, if this is as good as it is going to get, I no longer want to participate
anymore. I have no quality of life any longer. I can’t dust the house without running a fever and having to rest. I can no longer bathe
without having to lie down and recover. My breathing has become so bad that I am now on an oxygen machine at night. I can no
longer drive because two weeks ago, I forgot that you have to use the breaks at a red light… no accident occurred, except the fear
that remains with me that I could have hurt someone. My body hurts all of the time with a level of pain that is so intense that I broke
down and accepted yet another defeat (in my own mind) of taking pills for the pain. I don’t sleep, I cry at the drop of a hat, I feel
sorry for myself, I feel sorry for my husband, and I continued to wonder why I haven’t given up. Where had this strength come
from? I have had folks that I do not even know send me instant messages and told me that they don’t know what or how but God
has something in mind for me. They told me to keep hold of my faith and persevere. That I did do. I know that it is only by God’s
grace that I am able to tell you this story. I have fought for two and a half years to see a neurosurgeon in person. All other contacts
with neurosurgeons have been in the form of having my medical records sent to them and then receiving a rejection letter in the mail.
Dr. Stephen B. Tatter of Wake-Forest University in Winston-Salem, N.C. was the first to agree to see me. He is a positive man
whose first comments to me were, as a neurosurgeon, it is his pleasure to try and work a miracle and give hope. He stated that most
surgeons don’t do DBS surgery for a lot of people who really need it because there is very little monetary reimbursement for this
procedure for the physician. He also said that his definition of success is not the same as others. He said that he cannot stop the
progression of this disease but he can provide quality of life and it is his patients that define success in terms of quality of life. The
surgery is done differently for people with MSA than for idiopathic Parkinson’s disease. It is put in the thalamus and the decision on
whether to do any leisioning (pallodomy or thallodomy) is reserved for the operating room. My husband asked if this could be a
Christmas present for us and he said that he should be able to perform the surgery sometime in the two weeks preceding Christmas.
Unlike other doctors, he turns the unit on immediately. He said that most patients, even though it is not perfect, enjoy having some
lessining of symptoms than having to wait a month to have the thing programmed. The unit will be correctly calibrated in a month.
Dr. Tatter said that I do indeed have a type I Chiari malformation but he does not feel that this is what is causing my problems. He
said that he will continue to monitor it but does not feel that anything needs to be done with it at this point in time. He feels that the
pain is caused by the rigidity and that the fever is caused by my muscles working against one anther. That is also why I fatigue so
easily. He joked with me when I told him that I, being the geek that I am, will figure out a way to program it myself. He said after he
gets me tweaked that I may have to go and work for him as an IT director. He gave me hope of working again. He gave me hope.
Folks, that last sentence is the one that I want you to take to heart, in particular, one specific word in that sentence…. HOPE! Hang
onto that! Please don’t give up! This is a terrible battle that we fight. It is a rollercoaster of dreams and fears. Who knows, I may or
may not win this battle but as long as I can see that pervasive light at the end of the tunnel, then there IS something to fight for.
There is a reason to endure past the point that we think that we are capable. There is a purpose for us having this disease. There is a
reason that only God knows why. So I challenge each and every one of you to grab your bootstraps and reach out to someone else
and help re-light their fire. Let’s follow Brenda and Nan’s vision and work together to help each other. Let’s promote and support
one another. Let’s make this a mutual lean… so that no one falls down and no one feels like they are taking more than they are
giving or giving more than they are taking. Let’s pat each other on the back and help find the answers for one another. Oh, just got
the call….. Surgery is scheduled for December 21st.



delando
02 Dec 2001
07:41 PM

hows everybody doing out in lala land. Be happy and joyful.



Janemartha
02 Dec 2001
06:39 PM

Hello! I have a message from my very good friend, Rande...HER COMPUTER IS NOT ALLOWING HER ONLINE!...just so you
know if you're wondering! Hope you had a good day!



Eileen G.
02 Dec 2001
12:06 AM

I am curious if anyone developed Parkinson like sympotoms after being on long term lithium therapy?



Eileen
02 Dec 2001
12:05 AM



Ryan
01 Dec 2001
12:21 PM

2nd Annual December "Love Bug" Support Game Objective: The reason for this activity, is to keep you and others from getting, or
staying down through the Holidays. I know that you can’t cheer up others properly when you, yourself is down. As you give others
a "REASON for the SEASON" you will be talked to or written to, as well. Both "BUGGED" & "BUGGER" {? LOL} will be
blessed. It’s hard to help others to count their blessings without counting your own. "LOVE BUG" REGULATIONS 1. Read all
the regulations to decide if you would like to participate. 2. This drawing was open to anyone who has the Christmas Spirit. There
are Parkies, caregivers, & friends entered. ALL participants are welcome volunteers. 3. If you wish to participate, send your name
and e-mail address to me (Ryan Tripp) at ryan.tripp@sympatico.ca by Saturday, December 8, 2001at midnight. 4.The names will be
drawn, by numbering the total participants on pieces of individual papers. Then, putting them into a bowl & drawing them, one at a
time. Each name pulled will be placed beside my Master list of names, which will be recorded in the order that they register. 5.
Within a couple of days, I will be sending you, the "LOVE BUG," both who you drew {to be BUGGED}, & who drew you
{who’s BUGGING you}. So you KNOW why that new e-mail’s there. 6. On or before 12-15-01 thru 01-02-02 you will email, daily,
words of encouragement, love, friendship, or positive re-enforcement to your "BUGGED." Even if you are away for part of the
time, no problem. 7. NOTICE! There are NO romantic, or sexually explicit comments allowed in this program. There is a time & a
place & THIS AIN"T IT! 8. Drawing is final. If you can’t be with the one you love, love the one you’re with. I hope that you will
give serious consideration to participating in this, both fun and helpful activity. The registration desk is open for business. Just
picking up on a great activity, co-ordinated by Toad, last year. Hoping for a happy, healthy holiday season! ? ryan aka tripper



Carolyn (Gunny)
30 Nov 2001
09:11 PM

Well Comcast has done it again for all of us using cable modems. @Home.com filed bankruptcy and as of midnight tonight, Nov.
30, their out of business and so are 4 million subscribers. Hope to see you all soon. Carolyn



Darrell
30 Nov 2001
02:51 AM

Just curious, what happened to my journal?



Bren
25 Nov 2001
01:01 PM

I may be behind times, but I found this great web site...I've just started looking it over and am impressed ... check it out. Bren
http://www.neurologychannel.com/parkinsonsdisease/



Bren
25 Nov 2001
08:15 AM

I hope each of you had a wonderful and ful"filling" Thanksgiving. I think we possibly had more to be thankful for this year. I know I
did...if not just the realization of it. Got back late yesterday from the best Thanksgiving in my memorable life. This was the first
Tday in seven years that Gary and I were with our kids and grandkids...it was wonderful. I have bunions on my butt from the 3000
mile roundtrip to Albuequerque but it was very much worth it. Love to you all...now I'll find my soft pillow to sit on! LOL Bren



jes123/joan snyder
24 Nov 2001
06:45 PM

if you are interested in seeing photos from our recent trip to New York and to the LIGHT OF DAY concert in New Jersey...and
also new school pix of my kids and niece-either click on or cut and paste:
http://y42.briefcase.yahoo.com/bc/joanesnyder/lst?.dir=/EVENTS&.done=http%3a//my.yahoo.com/p/d.html%3fv



pwnkle
24 Nov 2001
01:08 AM

We ask you all to send us your holiday greetings in a voice recording, writing( via email),art,photos,poems,stories or hand made
greeting card to publish in the upcoming issue of Virtuality. We'll have links as 'gifts' under the virtual Christmas tree in 'V' and each
link will be something personal from a reader that conveys good wishes. We need this soon, Virtuality will be published to the
internet on the first of December so please hurry and send us your holiday cheer to share with each other in this December issue!
cmcleod@one.net



Nan aka TLC
22 Nov 2001
02:14 PM

Happy Thanksgiving to everyone! Much Love, Nan



pwnkle
22 Nov 2001
08:55 AM

Happy Thanksgiving Day



David
19 Nov 2001
04:25 PM

My book, "Amazing Humor - Amazing Grace" is now being sold. All the profits sold through PLWP will be retained by PLWP.
The book is a collection of humorous stories from my ministry and devotions that may bring a smile or a tear, but hopefully will
lead us closer to God. Brenda Tucker has a copy if you would like an opinion of the book. The price is $15. Order through
drv14@yahoo.com



Jeanette
18 Nov 2001
01:31 PM

Ooops....my e-mail<lefuhr@grm.net>



Jeanette
18 Nov 2001
01:30 PM

I've lost 3mail for Tena McEnery(sp) a plwp who used to have an aol of lavenderloo..... If anyone knows Tena, plz email me or her
telling her Jeanette would like to get in touch.



oshchosh
17 Nov 2001
08:26 AM

NEAT CALENDAR TIM. Thank you



PS
17 Nov 2001
06:28 AM

You can click on the Calendar button or view from the following URL
http://www.abrio.com/cal/com.confluent.cal.PublishServlet?login=plwp Easier to click on the link ;) Tim



Tim - tpfrph
17 Nov 2001
06:27 AM

A calendar was added to the indes page. If you wish to add events,personal anniverseries, birthdays - anything you want - email me
at tpfrph@yahoo.com All PLWP meetings and events will be posted including other Parkie events. Tim



Bea
16 Nov 2001
01:52 PM

I need the e-mails of the following people....help me out if you are able please: Chy Lil Mary Rich (Seattle) Brenda ty
Bea@roadrunner.nf.net



BobbyLeeNTn
16 Nov 2001
09:19 AM



Figlet
15 Nov 2001
07:58 PM

Thanks Ryan. I called the doctors office and they are surprised that a nerve test is being performed for a PD patient. But thats our
Social Security. Donna



ryan
15 Nov 2001
12:42 AM

Hi Donna, If the nerve test is like the ones I have had, they electrically stimulate the nerve root and record the reaction ie length of
time from stimulation to movement and type of movement,etc. These tests are usually done on muscles in the arms, hands, legs and
feet. I had these done before I had the fusions done in my neck and lower back. Ask lots of questions and find out exactly what
they plan to do. I hope that helps some. Best wishes to you both.



Figlet
14 Nov 2001
05:40 PM

Jim just received a notice from Social Security requiring him to take a "Nerve" Test. Does anyone have any experience with this or
can tell me what it is and what does it have to do with PD. Thanks Donna



ryan
14 Nov 2001
03:56 PM

Thank you very much Janemartha and Jes for the updated information regarding the Unity Walk.



Janet Gervase
13 Nov 2001
09:46 PM

Does anyone know of any alternate medicines or recommended vitamins to take along with my medicines that might ease the effects
of parkinsons or slow down the process. e-mail GERVASE81@AOL.COM THANK YOU.....



ypd-mike
12 Nov 2001
11:25 PM

SPRING RALLY, HIP HIP HOORAY!!!! I'M READY. COME ONE COME ALL....ITS A GREAT TIME.....CAN'T WAIT....
YEPEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEEE YPD-MIKE



jes/joan
12 Nov 2001
08:45 AM

hi all-it is my understanding that the Unity Walk will be handled by the Parkinson Alliance with the help of Margot Zoebel and will be
held on April 14th. i will be having a satellite walk here in the Peoria/Chillicothe area so if it is closer (or cheaper) for you to come
here-my house is always open! or maybe you'd be interested in doing a unity walk on the same day in your hometown??!! if you are,
let me know & i have some details before you make that decision...it's lots easier than a golf tournament!



jes/joan
12 Nov 2001
08:27 AM



janemartha
11 Nov 2001
09:28 AM

Hi, Ryan...As far as I know there will be another "Spring Rally" in 2002. So far there are no plans made as to when or
where...Rande and I are considering sites now. Thanks for the info on Bridging the Borders...that helps with scheduling. Also,
Rande and I will post hotel accommodations, etc. for the Unity Walk by February hopefully! Geez...we had better get moving!
Thanks Ryan and hope we'll be seeing you in 2002!



Ryan
10 Nov 2001
10:21 PM

Thank you, Donna. Nice and warm in S.C., I'll bet. Looking like snow flurries here!! :) Ryan



Figlet
10 Nov 2001
09:00 PM

Ryan It will be April 14, you can check out the web site for the Unity Walk for additional info. Donna



Ryan
10 Nov 2001
06:44 PM

Questions to Anyone; I heard via the grapevine that The Unity Walk was either being rescheduled or held at some point in the spring
of 2002. If so, when? Also, I don't usually do a lot of long range planning, but Lynda, Jan and I will be considering dated for our
3rd Bridging The Border Conference, usually late March or early May, sometime in the next month. Is another PLWP Reunion
being planned and if so, when?? Any information on above would be most helpful. Thanks for you help, input and support. :) Ryan



Carolyn (Gunny)
10 Nov 2001
03:04 PM

Hello Everyone; How about a date in the chat room of Sandy's Parkie Porch tonight, 8:00 p.m. est. Be there in your most comfy
outfit, drink, and favorite munchie. Links are on home page of PLWP and the porch post area. See you all later. Joy in your heart



Nan
07 Nov 2001
10:18 PM

sorry for double post!!!



Nan and Bren
07 Nov 2001
02:01 PM

Sandy, Congrats on having more than 12,000 hits at Sandy's Parkie Porch. You are awesome girl! Way to go! Love ya Nan and
Bren



Nan aka TLC and Bren
07 Nov 2001
01:58 PM

Sandy, Congrats on having more than 12,000 hits on Sandy's Parkie Porch. You are truly awesome girl!! Way to go! Love ya Nan
and Bren



bella
07 Nov 2001
05:04 AM

yo Pwn..I am here..hope you are in bed. Hugs



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