February 10, 2007
PWMS chat ! - Update:
Chat has been progressively busier every day. We want to thank everyone who has been working on making chat what it is. As we have told everyone in chat, we can provide the chat room, but you, the chatters, make the room what it is. We seem, for the most part, to all be on the same page as far as what we are looking for in a chat room. Help support each other - we all in the same boat, Even if we didn't want to take the trip. The MS trip!
PWMS welcomes our new Chat Coordinator!
PWMS welcomes Norma as our new Chat Coordinator! She has worked so very hard helping us coordinate chat hosting. She is online more than any of us. Please give her any changes you may have on your hosting. Let's try to make it has simple as we can. If you want to add your name to the weekly scheduled hosting, please tell Norma and she will let you know what is available. Norma is a very motivated lady, so please don't wear her down with tons of changes! We need her. I am sure she would love to fill up the whole day with names of chatters who will host, help her out. Norma also will guide you to the chat page for information on hosting if you wish to do so.
Paulette, Citrine, Frosty, Pokey, Joyce
About Chats . . .
Some of our Chatters are working really hard hosting chats. It is so nice to have someone in the room when we need to talk. Check the hosting schedule below. Come in and say "Hi, Glad you're here." (see our chat schedule below ) We like to have what we call buddy hosting. 2 hosts at a time. You ask why? This way no one is alone waiting, just in case everyone else is busy that day.
Chat Etiquette Reminder
Please make a point to welcome any new chatter that comes in our room. Introduce yourself. Ask if there is anything special they want to ask about, know about. Don't ignore the new chatter. Offer them coffee and a muffin. Make them feel at home. Don't keep chattering about peripheral MS stuff with others, or off-topic stuff.
Just keep in mind the one rule we have: nobody gets to play Doctor in chat. What we mean by that is; don't go diagnosing chatters ailments or recommending medications. Share your experiences, and what any of the drugs have done for you. Don't encourage the idea that any medication is a miracle cure. Or dismiss any, or all, medicines as doing nothing. Even the well known medications have a wide range of effectiveness. The effectiveness of non-traditional and alternative medicines is even less certain. So talk about your experiences, factual studies and medical trials. Offer your opinions with care, and never recommend. Third hand medical testimonials from a friend of your auto mechanic's wife aren't welcome, unless they are really funny.
Also keep in mind that Laws and Health Care options also vary widely both within countries and across the globe. So be sensitive to the personal situations and tribulations chatters face. Don't rub in how great things are for you.
Stories and Pictures
This could be you
|Your name, story, and
photo in the spotlight, right
here in our newsletter. Just send it along to: PWMS@PeopleWithMS.com
People like to read other stories about MS and dealing with the everyday life with MS. Everyone's M.S. is different and everyone's story is different. Get to know the chatters we chat with.
NEW BIRTHDAY PAGE
* * * We need someone to keep track of our chatters Birthday's. *
FAMOUS PEOPLE WITH MS PAGE
We're making up a new Famous People Page and we need your input . . . .
So far, we have some semi-famous people. Not really a lot, and not really terrifically famous. Kind of a sad excuse for a list. You're sure to know the name of one or more people that are way more famous. Send us the name of any well known person with MS, and perhaps a one liner about them (like 'World Renowned Chia Rancher ' ) PWMS@PeopleWithMS.com
CLICK HEREFAMOUS PEOPLE WITH MS PAGE CLICK HERE
PWMS Welcomes . . .
Any chatters touched by M.S. What this means is anyone with M.S., a family member of anyone with M.S., or simply a friend who wants to understand M.S.
And please, anytime you come in chat and the conversation is not MS related, just pipe up with your MS question, issue, or problem. MS is our # 1 topic in chat. Most everything else is just background information on what and how people are doing, etc.
We have chatters who are on Avonex, Beta, Rebif, Copaxone, and Tysabri. And myriad other medicines to address various symptoms. So if you have any questions on any of these drugs ask away. Keep in mind everyone is different. Different drugs affect everyone differently. It is very frustrating to all of us but that's the way it is.
LDN - Vanessa has battled with different MS meds for many years. She has not found any that had any positive effects without leaving her with some very bad reactions. LDN has helped a lot with her symptoms. Vanessa is in chat mostly every night with us. I am sure she would share with anyone who has any interest in LDN.
After a number of months of difficulties, I was MRI'd and swiftly diagnosed with....surprise!!! Multiple Sclerosis. Multiple whatsis? I knew nothing, was scared, but resourceful. I sought out every source of on-line information. One source being a woman whose daughter had been diagnosed with MS a couple of years earlier. We shared information, and more. Fell in love. Were married. Gained a stepdaughter, Lisa (above) and stepson-in-law, Jim. Started this website to share what we have learned. Have been living happily ever after, one day at a time. (more)
Our Wednesday evening Healthy eating support group has started out so well that we added 3 pages to our web site, and more to the pages. You can find a print out journal, recipes, and check out the exercise page.
We will meet every Wednesday evening - check below for your local time
Chat Hosting Schedule
Please feel free to give us some ideas for chat. Hey, you can even take charge! Do your own weekly, or whenever, chat. Just invite your friends in, have a party. We have many rooms you can have your chat in your own room.
The schedule below shows the schedule of a group of regular chatters who are volunteering a couple of hours of their time to host chat on a regular basis. This makes a chat more successful; people knowing there is someone available to provide support at dependable, specific times.
|Chat Schedule - February 10, 2007|
|Monday||RonB & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Monday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Tuesday||Norma & Blak||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Tuesday||Cindy & Vanessa||6 -8 pm||1 - 3 pm||NOON - 2 pm||11 am - 1 pm||10 am - NOON|
|Tuesday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Wednesday||Marlene (aka LadyCove) & Nancy||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Wednesday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Thursday||Tara & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Thursday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Friday||RonB & Norma||4 -6 pm||11 am - 1 pm||10 - NOON||9 - 11 am||8 - 10 am|
|Friday||PhilNE & Kathie||6 -8 pm||1 - 3 pm||NOON - 2 pm||11 am - 1 pm||10 am - NOON|
|Friday||Norma & Rod||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Saturday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
|Sunday||Deb & MrRED||1 - 3 am||8 - 10 pm||7 -9 pm||6 -8 pm||5 - 7 pm|
Note to New Visitors:
When a scheduled host is logged in, say Hi and hang around a couple of minutes if the room isn't busy -> they're probably just grabbing a cup of coffee or reading e-mail in another window.
When nobody is scheduled to host, take a look on the right side for any other names. If so, say ' Hi' and type their name just as you see it => that'll 'beep ' on their speakers.
Check the 'Connections' Room to see if anyone has stopped by, left a message, and is coming back soon.
Contact us at PWMS@PeopleWithMS.com if you;d like to host on a regular basis.
MS BRACELETS OF HOPE
One of our chatters is making MS Bracelets of Hope. She is selling them and donating part of the proceeds to the MS Society. I have to say, they are the very best I have ever seen. Excellent quality sterling silver with Swarovski crystals. The Women's one is shown to the left. The Men's one is sterling silver with wooden beads. She has started a web site at http://www.freewebs.com/msthings/
PWMS Welcomes MSer's from all over
|Wayne is going on a super cruise in the South Pacific next week. Have a great time Wayne! Relax, so when you come back we can get cracking on some serious hosting! We welcome all the new chatters from Australia.|
|We have also posted our first online edition of Kanga's Australian Newsletter, Mentioning Stuff. Thank you so much for your hard work. It's a great Newsletter Kanga! You will all be seeing Kanga more in chat. You can read it here http://PeopleWithMS.com/OZ/|
We have no contacts with anyone in Canada for information on an existing weekly or monthly MS newsletter. Please help us out if you have any leads to information on a Newsletter and how to get it. If there isn't one, maybe you could lend a hand on starting one. Or by adding some information to help us build up the Canadian portion of the web site.
COME ON CANADA - HELP US OUT HERE!
We're starting a new set of inspirational pages called thePoetry Pages
Thinking out loud" comments she wrote a few years back. Thinking out Loud!
Please Email us with any poems you would like to share with us PWMS@peoplewithms.com
|Check out all of the recipes on our web site that chatters have shared with us|
Please Email us with any recipes you would like to share with us PWMS@peoplewithms.com
Our objective is to provide an informal, supportive site for people seeking on-line information about Multiple Sclerosis. We aren't doctors, we aren't experts. We just live it everyday. We formed this site to share what we have learned, provide a focal point for exchange of information, and give back to the community.
Support is a very big word when it comes to MS. Doctors can only tell you so much during an office visit. Leaving unanswered questions, concerns and issues. People with any disease can often learn best from each other. To this end we provide a chat forum to share information and suggestions, posting of the latest news, and links to authoritative sources of information.
There are many informative sites out there. Visit them all! You can never have enough information. We do not intend to compete with any other sites. Like coffee shops, each has it's own unique atmosphere and clientele. There can never be enough of them.
Our chat is open for anything that has to do with MS. Some topics are not pleasant. But need to be talked about. If you have a problem, no matter what it is, chances are there is someone in chat that can help you. The one thing that PWMS will not accept is being laughed at for any MS problem. We expect all chatters to be considerate of others.
We have appointed Norma, Marlene, JeffS and JackIL room administrators. They have been using the chat. They walked through the set up with us. They can help you if you need help.
Preventing the Progression of MS
Learn about the ways that MS can progress and get expert strategies for slowing it down.
BONUS: Attend the live show online for your chance to win one of three pairs of Bose Collapsible Headphones, the lightweight, high-performance headphones that fold up for easy storage.
This HealthTalk program is sponsored through an educational grant from MS ActiveSource.
|The results from a large-scale trial to evaluate whether glatiramer acetate (GA) (a.k.a. Copaxone) can slow progression in PPMS are in, and unfortunately for people with PPMS, this trial did not produce strong evidence that GA is effective against the disease. People who received GA did have slower progression than those on the placebo, but this difference was not statistically significant. One aspect of the trial that may have affected the outcome was that the participants progressed more slowly on average than expected, which made it more difficult to demonstrate any effect of the drug. On the plus side, that means that people with PPMS may have a less severe course than the experts who designed the study originally thought. Also on the plus side, the drug did show a significant benefit in terms of MRI measurements, and it also seemed to slow progression in males who received the drug compared with males on placebo. So perhaps the use of GA in PPMS is worth some further study.|
The Multiple Sclerosis Association of America (MSAA) has produced a monograph titled, Thinking about Complementary and Alternative Medicine? The monograph provides an introduction for people with multiple sclerosis (MS) on how to find and evaluate claims about complementary and alternative medicine (CAM). This is the first of two monographs MSAA is publishing through a grant from Berlex. You can get a PDF version here or see an HTML version here.
Details and a press release at ldners.org
National MS Society
Raises Concerns that Recent NIH Study Underestimates Number of People with
MS in the U.S.
An article released in the January 30, 2007 issue of the journal Neurology reviews previously published estimates of the numbers of people affected by various neurological disorders including multiple sclerosis. Lead author Deborah Hirtz, MD, and coauthors, from the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention, estimate that the annual incidence of MS in the United States (new cases diagnosed during a 12-month period) was approximately 4.2 new cases per 100,000 population in 2005. They also estimate that the total number of people with MS (prevalence) in the U.S. in 2005 was approximately 266,000, and that the prevalence rate (90 cases per 100,000 population) was 50% higher than an estimate published 25 years ago. However, this prevalence rate of 90 per 100,000 is actually lower than a figure also published by the NIH in an article appearing in 1992 (Annals of Neurology 1992 Mar;31(3):333-6).
study estimated that the total number of people with MS in the U.S. was
approximately 300,000. Based on that 1992 study the Society estimates
the prevalence of MS to be about 135 per 100,000 population in the U.S.
at the present time, for a total MS population of approximately
400,000. The Society arrived at this figure by using the same
age-specific prevalence rates used in the 1992 article, adjusting for
population growth and population shifts in the U.S.
Montel Williams is promoting the new prescription program
" Partnership for Prescription Assistance " :
call 1-888-477-2669 / 1-888-4PPA-NOW
There are over 150 different programs that can help you get your meds for free, or at a low cost. Check it out ! ! !
We also have some links up on our web site that may help. Check it outPatient Assistance Programs
If anyone has anything they think ought to be added to the weekly news letter, please email me at firstname.lastname@example.org.