|Chat Schedule||Stories and Pictures|
|MS Canada||Famous People|
|Recipes||Rod's Music Shoppe|
PWMS Chat Update:
We are very happy to say that we have hosts in chat most days from 8am till MIDNIGHT. We honestly thought it would never happen, but it's very close. We want to thank everyone who is part of making it happen. Of course our chat coordinator, Norma, and all of our hosts: Phil. Nancy, Jack, Marlene, Debby, Dream, RonB, Rod, Kanga, Snowdogs, MS_Kitty, Sae What. Citrine. You all have made it happen. It's a great feeling that any MSer who needs to chat will have a place to vent, ask for help, or suggestions and someone will be there. Check out the link to our latest hosting schedule below.
Please, if you go in chat and a host does not answer you right away, please wait, Our hosts do a 2 hours stretch and need bathroom time and coffee time. So if they're away right at the sec you arrive, be patient, they will come back.
Preface . . .
"WE GO TO THESE ROOMS TO HELP THOSE THAT NEED IT AND TO FORGET OUR OWN TROUBLES. IT IS NOT A REFERENDUM FOR POLITICAL, RELIGIOUS, OR MEDICAL DEBATE. HAVE AN OPEN MIND...WHAT WORKS FOR YOU MAY NOT FOR ANOTHER." ©copyright 2004 JLS (JEFFS)
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.
Norma is coordinating all chats. Please contact her for any changes. All you have to do is look at the schedule for and find a place that fits when hosting is good for you. If somebody is already hosting then, pop in to support them, and let them know you'll back-up, or buddy host with them. Just let her know what you choose! Norma's email is NORMAJJOHNSTON@SBCGLOBAL.NET
Or contact us at PWMS@PeopleWithMS.com if you'd like to host on a regular basis.
Chat Hosting Schedule *** Newly Revised ***
The Global Chat Schedule was comprehensive, but confusing. . . . . So it has been revised to break things down by day, and show the equivalent times in different time zones. Hopefully this will make it a bit clearer how an Eastern Standard Time relates to some other timezone or country.
Reading the schedule is easy: Just click on the day of the week to jump down. and then look down from your local time zone on top to the time you are interested in => bold times are when hosts have volunteered to be present.
Knowing someone is available to provide support at dependable, specific local times makes a chat more successful.
Trivia Night in the PeopleWithMS Chat
Marlene, the hostess for our Thursday Night Trivial Chat has the questions. And the answers. She's always right. Debby was our Trivia Queen for the week! It was a fast moving and challenging contest. NAIL BITING ALL THE WAY! With Mag's and Red runners up.
Join us Thursdays at 7 pm EST for some fun.
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. *
|Chat access technical help!
The AddOnChat folks have made some substantial improvements in their support, knowledgebase, and help pages covering chat access and usage. We'll be making some major updates to reflect this on our chat access help pages, as well as the Big Blue Button help in chat, and the macros. Keep your eyes peeled.
Beat The Heat
Cooling Equipment Distribution
Many people with multiple sclerosis are heat sensitive. MS research has proven that heat and humidity often aggravate common MS symptoms. MS research has also proven that cooling the body can help lessen the negative effects of heat and humidity on a person with MS.
MSAA’s Cooling Equipment Distribution Program is a highly successful branch of the Equipment Distribution Program. In association with the National Aeronautics and Space Administration (NASA), MSAA has conducted extensive research into the effects of moderate, controlled cooling on individuals with heat-sensitive MS. Along with other research studies, results have repeatedly shown that many individuals with heat-sensitive MS find temporary relief of certain symptoms by wearing active cooling garments. Among others, symptom relief may include improvements in energy level, cognitive processing, and motor function through the use of such cooling devices.
The Cooling Equipment Distribution Program provides special cooling apparel at no charge to individuals with MS. “Active Suits” have a separate cooling unit that circulates cool liquid through a vest and cap worn by the user. “Passive” cooling apparel includes vests, collars, bandanas, and wristbands that either hold cool inserts or contain special material that remains cool for up to two hours.
Active cooling is considered a therapy and requires both a doctor’s prescription and supervision for usage. Heat is extracted from the system by re-circulating the fluid through ice. Clinical research has shown that active cooling systems can significantly reduce the temperature in certain areas of the body. When areas of the central nervous system that have been demyelinated are cooled, the conductivity across the damaged area is greatly enhanced. This increased conductivity allows more effective transmission of signals, which can reduce some symptoms.
Passive cooling systems help maintain a cooler body temperature. These can be used outdoors in hot weather or during exercise regimens. These passive systems do not reduce body temperature, and are not considered a therapy. They do provide relief from heat for short periods of time.
PWMS Welcomes MSer's from all over
|Hold onto your hats ! ! ! The June online edition of Kanga's Australian Newsletter, Mentioning Stuff, will be on our newstand shortly ! You can get it hot off the virtual printing press here http://PeopleWithMS.com/OZ/|
|If you have any favorite links to resources, now's the time to mention it. . . Post us at PWMS@PeopleWithMS.com|
chats, which follow directly from the North
American evening chats. Hang around chat a
bit on those nights to help Kanga and Snowdogs welcome newcomers.
Meanwhile, Wayno is in rehab for a month. Hopefully this will improve his chat hosting skills ;)
If you are interested in lending a hand on the Canadian portiion of our site, let us know. Or let us know where you have seen information we should add to help us build up the Canadian portion of the web site.
COME ON CANADA - HELP US OUT HERE! WE CAN'T BELIEVE NO ONE FROM CANADA WILL HELP OUT WITH INFORMATION.
|Some of you have met Rod, one of our Florida chatters. He has been also been known as our DJ ! He has a very large collection of music. Rod has offered to do his best to find any song you're looking for, and email it to you. He needs the obvious: Name of singer ! Name of song ! He's not a mind reader LOL ! You can email him your requests at: LINGRAM1@TAMPABAY.RR.COM You can also meet Rod in a early AM chat on Saturday's!!! Check times!|
Check it out on our inspirational Poetry Pages
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
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 'The Wild West's Infamous Egg Poacher ' ) 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, Debby, MS_Kitty, JeffS, JackIL, PhilCT, Kanga, and Wayne room administrators. They have been using the chat. They walked through the set up with us. They can help you if you need help.
Jeffs is at the helm of our bold new daily news effort for PeopleWithMS. Jeffs energy in researching, digging, and news follow-up is amazing.
If you spot something new before Jeffs gets it listed, send the link along to him: NewsWire@PeopleWithMS.com
(click on the logo)
If anyone has anything they think ought to be added to the weekly news letter, please email me at email@example.com.
Want to receive our Newsletter ?
Send us a request; PWMS@PeopleWithMS.com
If you have trouble reading HTML formatted e-mail, you can always view it as a web page on-line:
MS_ Kitty has suggested incorporating a newsfeed feature on the site. The newsfeed would supply a page of links to current medical news of interest ( ' tuned ' for our test purposes to be wide open, as opposed to MS or neurologically specific). As a commercially provided service, this carries some advertising baggage not present on the PWMS site, and some risk of user-hostile java. As they say in their disclaimer:
The health news headlines shown above are provided courtesy of Medical News Today and are subject to the terms and conditions stated on the Medical News Today website.
We would still keep be keeping our news on the wire, which is a more permanent news repository. However, this could add a broader current flavor of medical news to our site. Useful ? Confusing ? Please try it at the link below:
and email us what you think. PWMS@PeopleWithMS.com
News Letter Archive
Missed something from an old Newsletter? Find it here !