|Chat Schedule||Stories and Pictures|
|MS Canada||Famous People|
|Recipes||Rod's Music Shoppe|
PWMS Chat Update:
It has been very busy in chats during the day! PWMS thanks all of you who have made this happen. We have many people volunteering a couple of hours at a time to host a chat. So there is somebody there, for sure , to greet people at the advertised times. With that said, we try to have two hosts at a time. Partly so everyone has a back up, and partly to keep conversation going in a healthy direction for two hours. It can be hard sometimes if you aren't feeling well that day, or chatters feel like goofing around. Having two hosts makes it easier.
Our Aussie chats are so much fun with Kanga. Most nights when she hosts we don't want to leave LOL. Some of you that are on the west coast really should join her and support her. She is a real nice lady!
We also what to thank the many others who are also helping out either by hosting, with their presence, or behind the scenes help.
|Click Here to jump to the full Chat Schedule Page|
|It is always the final word on who's hosting, when !|
Stories and Pictures
|Citrine||My name is Carol, I was diagnosed with RRMS in November of 1995, I am 51 years old and I live in southern Maine. My earliest awareness of an MS symptom occurred in 1983 while I was putting my shoes on to go out to an Autumn Fair and my feet felt "weird".. all evening long, some of the sensation was missing along with pins and needles feeling. The feelings went away after a nights sleep. (more)|
Well, my MS story starts when I was thirty and got chicken pox for the
first time.( I just turned 41 ) After being bed ridden for 2 months I slowly
recovered. About3 years later i started haveing numbness in my fingers and toes.
This progressed to one half of my body being numb.
After a lot of Doctors and test i was DX with MS. I started taking AVONEX injection, and had no other symptoms untill this past year. I am just getting the feeling back in my feet.
I am still working and driving, I ride horses, motor cycles and fish and hunt. I have a hot rod frame shop and build dragsters on the side. I have a daughter I love and a wife of 15 years who is my best friend.
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.
Hi, my name is RickÖthis is my story
Iím 48 years old and was diagnosed at 36 with RRMS. 1st exacerbation I lost all feeling in my body, it steadily went numb. Almost a year later the feeling began to return, in reverse of how it started. The end result being only my left hand has remained numb. (Great when needing to get finger jabbed for a blood sample.(more)
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
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.
Those Darned &)$&($)*$#)! !! !!! Flashing Avatars!
If those flashing avatars and emoticons bother you, you can easily turn them off. Just move your mouse cursor up into gray chat text area and right click your mouse to display a pop up menu. In middle of the menu are two lines with check-boxes for "Show Avatars" and "Show Emoticons." Uncheck the boxes, and the flashing will stop.
Norma is coordinating all chats please contact her for any changes. All you have to do is look below and find a place that fits when hosting is good for you. Just let her know what you choose!
Chat Hosting Schedule
The Chat Schedule has been revised to shows times and time zones when chatters have volunteered 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 local times.
|Click Here to jump to the full Chat Schedule Page|
|It is always the final word on who's hosting, when !|
Following is just a sample showing the chat times in major time zones and across days (the different colos)
Contact us at PWMS@PeopleWithMS.com if you'd like to host on a regular basis.
PWMS Welcomes MSer's from all over
|Wayno has returned from his exotic cruise in the South Pacific this week. He ought to have some great sea and sand stories to share over the next few nights.|
|This upcoming week will see the latest 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/|
|This is the week we've started on the OzLinks page. If you have any favorite links to resources, now's the time to mention it. . . Post us at PWMS@PeopleWithMS.com|
|Wayno and Kanga are going to start organizing and advertising some Down-Under chats fitting the topsy-turvy times. Their Mid-Day chats are going to pretty much continue right along towards the end of our evening chats. So hang around chat a bit on those nights to help Kanga and Wayno welcome newcomers.|
If you are interested in lending a hand on starting a Canadian Newsletter, 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!
|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|
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 http://www.freewebs.com/msthings/ If her web site is down you can email her at email@example.com
Inspirational pages called thePoetry Pages
Please Email us with any poems you would like to share with us PWMS@peoplewithms.com
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
|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, JackIL, 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.
Daylight Savings Time Stunts
Beginning this year at 2 a.m. on Sunday, Daylight Saving Time (DST) starts (three weeks earlier than usual) in the USA in a federal effort to save energy. For regular desk and wall clocks, correction is a simple matter of " Springing Forward " one hour. But millions of computers, servers and networks are programmed to move the hands forward on the first Sunday in April, the traditional date. This year, that means; " April Fools ! " So remember to reset your computer's clock ! (And remember to reset it again on April 1st ! )
Also pay attention to local variations in the rules. Locations
further from the equator are more likely to implement DST since there
is more seasonal variability in the length of ' daytime. "
Farming oriented areas or those on the edges of time oznes don't
necessarily observe DST. Or only go halfway. And half
of Australia just doesn't even bother cause they're way too cool.
In 1966, Congress passed the Uniform Time Act, which established Daylight Saving Time as beginning on the last Sunday in April and ending on the last Sunday of October. The federal government extended it during the 1973 Arab oil embargo and, in 1986, pushed up the start date to the first Sunday in April.
Congress' rationale in making the most recent time shift was to give people more daylight hours in the late afternoon and evening, cutting electricity needs. It's similar to the argument Ben Franklin made in the late 1700s, when he suggested that people save money on candles by taking maximum advantage of the sunlight.
Beginning in 2007, Daylight Saving Time has been expanded for most of the United States. The new Daylight Saving Time now lasts from the second Sunday in March to the first Sunday in November, meaning that Daylight Saving Time will begin this year on March 11.
Johns Hopkins Licenses Revimmune to Accentia Biopharmaceuticals
Accentia Biopharmaceuticals, Inc. (NASDAQ: ABPI) has acquired the exclusive worldwide rights for Revimmune, an ultra-high intensity, short-course of an intravenous formulation of an approved drug (cyclophosphamide), in a new patent-pending method to "reboot" a patient's immune system, thereby eliminating the autoimmunity, whereas current therapies including oral cyclophosphamide are used chronically to try to suppress the inflammation of autoimmunity.
Revimmune can be administered as an inpatient or outpatient infusion for 4 hours per day for 4 consecutive days. Patients can recover at home while their immune system reconstitutes itself over a 2 to 3 week period.
Results from 20 people with MS:
* All patients have had a reduction or elimination of new and enhancing lesions on the MRIThis sounds like a promising possibility for those with Progressive forms of MS where the traditional medications have become ineffective.
* No patient has had a clinical exacerbation following treatment and most patients have had a reduction in EDSS and an improvement in the MSFC following treatment
* During follow-up, no patients increased their baseline EDSS scores by more than 1.0
* No patient had a new lesion on brain magnetic resonance imaging; no patient showed any enhancing lesions
Add a Lower Gear to Your Wheelchair
Magic Wheels provides 2-gear wheelchair drive. These all mechanical wheels provide the user with 2 easily shifted gears for extraordinary mobility enhancement to navigate ramps, hills and all types of uneven or rough terrain. Fits onto standard manual wheelchairs and provides a 2:1 gear ratio in addition to the standard 1:1 making it twice as easy to push for going up ramps and hills, etc.
Magic Wheels also has a locking feature to allow you to stop part-way up a hill or on the way down without having to grip the wheels. See videos of this in action here.
If anyone has anything they think ought to be added to the weekly news letter, please email me at firstname.lastname@example.org.