 |
 |
Hi Kim, so sorry to hear about your Mom. My husband was diagnosed with PD in '91 & is probably in stage 3 now, he had trouble focusing on what he's doing, freezing quite often but the main reason I joined this group was to talk with caregivers who's patients have had trouble with side effects from the medicine PD patients must take. My husband hallucinates & is delusional off & on sometimes for now particular reason. I know stress causes some of the problem as does the medication, we are constantly "playing" with his medicines. He can't take any of the drugs that help the Sinemet work better as he'll go immediately into his other world. I'm trying to increase his Sinemet back up some but so far he hasn't been able to tolerate more than 1/2 a dose of the 50/200 CR & therefore is becoming stiffer & slower too quickly. He has some back problems, 3 compressed vertebrae in the lower back & his right hip is bone on bone so he spends most of his day laying down, the rest of the time he usually sleeps in his chair. He does get on our treadmill usually once a day so that does help. He's restless at night most of the time, usually having leg spasms. I'm going on & on here, sorry, you did mention that your Mom also experienced many side effects so am curious to know what problems she had & how you handled it if you did! My thoughts & prayers are with you, Nancy Christman > ****************** > Kim DaRosa > Investor Relations & > Marketing Assistant > JER Partners > >1650 Tysons Boulevard > >Suite 1600 > >McLean, VA 22102 > >(703)714-8064 (direct) > >(703)714-8141 (fax) > [log in to unmask] > ****************** > > I want to start by thanking you for such a wonderful website. My mother was > diagnosed with Parkinson's about 10 years ago. During the past several > years all she really had were the tremors and a little muscle stiffness. > When my dad passed away last December, she went down hill from there. She > is now is a nursing home confined to a wheelchair because she can't walk. > The doctor's say that the disease attacked the muscles behind her ankles > which is what's keeping her from walking. > > It is very hard for me to see my mom go through this because she was always > such a strong woman and it looks like she's giving up. I pray everyday for > a cure or for better medication. The medication my mom was on had serious > side effects so we've had to keep changing her medication. > > Thanks to this website, I'll be able to communicate with others that are > dealing with the same things that I am. Together we can support each other. > > > -----Original Message----- > From: L-Soft list server at UofT (1.8e) > [mailto:[log in to unmask]] > Sent: Wednesday, December 11, 2002 7:34 AM > To: DaRosa, Kim > Subject: You are now subscribed to the PARKINSN list > > > Wed, 11 Dec 2002 07:34:21 > > Your subscription to the PARKINSN list (Parkinson's Information Exchange > Network) has been accepted. > > Welcome! You have joined the PARKINSN mailing list, also known as the > Parkinson's Information Exchange Network (PIEnet). > > Please send a message to the list members (if you want to) introducing > yourself, perhaps telling us how you found us, and any > Parkinson's-related topics you would like. > > The address for posting messages to Parkinsn is: > [log in to unmask] > > Let me introduce myself. I am a secretary for four faculty members in the > School of Nursing, McMaster University. In September, 1992, I was > diagnosed as having Parkinson's ... hence my interest in this list. > > My purpose in starting the list was the exchange of information about > Parkinson's. The list rapidly changed into the largest support group I > know. Besides its original purpose, the list has become 'a means of > feeling connected' to others... a way of feeling we're not alone... of > making the road of living with pd easier to bear. > > I have always felt that we hear each other better on the list because we > can't see each other. Symptoms, age, colour, race, don't interfere. The > list knows no countries, has nothing to do with money... there's no > "what's in it for me?" > > But these same qualities mean our words are open to misinterpretation. > Since others can't see our wry smile or wink or hear our tone of voice, a > goal of keeping it "short & sweet" can result in appearing abrupt. > > Also, the same word can have different meanings and different shades of > meaning to different people in different areas of the world so care must be > taken in both your writing and your reading of the messages. > > Flaming and selling are not allowed. Please send messages in plain text > only. Do not make any changes in medication or any treatments without > consulting your physician. Be kind. Be honest. Share the time fairly.... if > you think you have taken more than your share of the list resources, you > just might have. > > Keep it generally related to Parkinson's. Don't abuse the generosity of > the University of Toronto's free gift of the list. Don't include all of > the message to which you are replying. Use plain text with no > attachments. Wash your hands with soap before you eat. :) In other words, > use the same common courtesy that you would elsewhere. > > We need everyone's voices if we are going to make a difference in the > care and treatment of pd and the motivation and funding of research. > Speak up. Tell your story. Ask your questions. Answer questions. > Debate/argue about the answers. Debate/argue about the goals, > administration, day-to-day functioning of the list. Tell a joke... but > please don't attempt to silence anyone else's voice. > > The messages on the Parkinsn list may be personal but they are NOT > private... never have been. The illusion of privacy when using e-mail is > just that: an illusion. > > Never, in the history of this planet, has this kind of relationship > existed. We meet in a place that has no walls. We talk to our friends > whom we have never seen. We care deeply for other members whom we will > never physically hug. Folks, we're making it up as we go along, so any > rules have to be flexible. Our Parkinsn Guidelines can be viewed at: > http://parkinsons-information-exchange-network-online.com/parkinsn.html > > If you wish to view Parkinsn messages online you may do so at: > http://parkinsons-information-exchange-network-online.com/maillist.html > > I hope you enjoy your involvement with the Parkinsn Information Exchange > Network. > > Barbara Patterson Owner Parkinsn John Cottingham co-owner Parkinsn > > Please save this message for future reference, especially if this is the > first time you are subscribing to an electronic mailing list. If you ever > need to leave the list, you will find the necessary instructions below. > Perhaps more importantly, saving a copy of this message (and of all > future subscription notices from other mailing lists) in a special mail > folder will give you instant access to the list of mailing lists that you > are subscribed to. This may prove very useful the next time you go on > vacation and need to leave the lists temporarily so as not to fill up > your mailbox while you are away! You should also save the "welcome > messages" from the list owners that you will occasionally receive after > subscribing to a new list. > > To send a message to all the people currently subscribed to the list, > just send mail to [log in to unmask] This is called "sending > mail to the list," because you send mail to a single address and LISTSERV > makes copies for all the people who have subscribed. This address > ([log in to unmask]) is also called the "list address." You > must never try to send any command to that address, as it would be > distributed to all the people who have subscribed. All commands must be > sent to the "LISTSERV address," [log in to unmask] It is very > important to understand the difference between the two, but fortunately it > is not complicated. The LISTSERV address is like a FAX number that > connects you to a machine, whereas the list address is like a normal > voice line connecting you to a person. If you make a mistake and dial the > FAX number when you wanted to talk to someone on the phone, you will > quickly realize that you used the wrong number and call again. No harm > will have been done. If on the other hand you accidentally make your FAX > call someone's voice line, the person receiving the call will be > inconvenienced, especially if your FAX then re-dials every 5 minutes. The > fact that most people will eventually connect the FAX machine to the > voice line to allow the FAX to go through and make the calls stop does > not mean that you should continue to send FAXes to the voice number. > People would just get mad at you. It works pretty much the same way with > mailing lists, with the difference that you are calling hundreds or > thousands of people at the same time, and consequently you can expect a > lot of people to get upset if you consistently send commands to the list > address. > > You may leave the list at any time by sending a "SIGNOFF PARKINSN" > command to [log in to unmask] You can also tell LISTSERV how > you want it to confirm the receipt of messages you send to the list. If > you do not trust the system, send a "SET PARKINSN REPRO" command and > LISTSERV will send you a copy of your own messages, so that you can see > that the message was distributed and did not get damaged on the way. > After a while you may find that this is getting annoying, especially if > your mail program does not tell you that the message is from you when it > informs you that new mail has arrived from PARKINSN. If you send a "SET > PARKINSN ACK NOREPRO" command, LISTSERV will mail you a short > acknowledgement instead, which will look different in your mailbox > directory. With most mail programs you will know immediately that this is an > acknowledgement you can read later. Finally, you can turn off > acknowledgements completely with "SET PARKINSN NOACK NOREPRO". > > Following instructions from the list owner, your subscription options > have been set to "MIME" rather than the usual LISTSERV defaults. For more > information about subscription options, send a "QUERY PARKINSN" command to > [log in to unmask] > > Contributions sent to this list are automatically archived. You can get a > list of the available archive files by sending an "INDEX PARKINSN" > command to [log in to unmask] You can then order these files > with a "GET PARKINSN LOGxxxx" command, or using LISTSERV's database > search facilities. Send an "INFO DATABASE" command for more information on > the latter. > > This list is available in digest form. If you wish to receive the > digested version of the postings, just issue a SET PARKINSN DIGEST > command. > > More information on LISTSERV commands can be found in the LISTSERV > reference card, which you can retrieve by sending an "INFO REFCARD" > command to [log in to unmask] > > ---------------------------------------------------------------------- > To sign-off Parkinsn send a message to: mailto:[log in to unmask] > In the body of the message put: signoff parkinsn ---------------------------------------------------------------------- To sign-off Parkinsn send a message to: mailto:[log in to unmask] In the body of the message put: signoff parkinsn