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 PeopleWithMS.com Newsletter


March 10, 2007

News
Chat Schedule Stories and Pictures
MS DownUnder ChatStar
MSGroup4You Birthdays
MS Canada Famous People
Healthy Eating Poems
Recipes Rod's Music Shoppe

 

PWMS Update:

In anticipation of the Daylight Savings festivities, we're unveiling a new Chat Schedule.

Some real interesting News has come across the PWMS virtual desktop this week.  Check it out !

We want to welcome Kanga and Wayne as new Room Administrators.  They will be hosting chats at times befitting their topsy-turvy world.  So Australia's mid-day chats (2-4 pm Sydney Time) will follow directly from North American evening chats.  Starting on North America's Sunday Night, Kanga is hosting DownUnder Mid-Day Chats on Sydney's Monday, Tuesday, and Wednesday.  Please join her, she welcomes all.  And Kanga has an accent you can almost hear in her typing. 

Wayne will also shortly start up early evening DownUnder Chats (5 - ? pm Sydney Time).  This starts at a late 1AM EST, but a more comfortable 10 pm PST.  Hopefully a good overlap.  Australian evening chats likely are at an hour few north of the equator are ever awake.  (Possibly a few British early-birds)



Stories and Pictures

   
NRJ 

My name is Neville, I live in the foothills of the Rocky Mountains in the City of Calgary, Alberta Canada. I have been dealing with MS since the mid 1980ís. It has not bothered me much (nor I have I bothered ďitĒ) until the past year. Iím not on any meds at the moment except Baclofen for spasticity of my legs. I have three great children, twin boys 29, and a daughter 27. Iím divorced, and was a single parent through my childrenís teen years which accounts for the gray hair. I even have two sweet grand children aged 4 and 2. I believe in having a positive attitude and a good sense of humor.  (more)

On Tuesday February 6, 2007 my wife, Yvonne, & I left on a 13 night cruise aboard the Pacific Sun with P & O Cruises to Vanuatu, the Fijian Islands & Noumea. We were travelling with 2 other couples who had cruised before & who had invited us to travel with them on this cruise. Kay & Greg Brown, of Wagga Wagga, NSW, were on their seventh cruise & Kerry & Barry Bland, also of Wagga Wagga, NSW were on their second cruise. Two children of Kerry & Barry (Aaron, 14 & Ashleigh, 16) were also travelling with us & this was their first cruise as well. ( more )
Jack has sent in some really nice photos of Emma and Tommy that you really need to take a look at  (more)
This Could Be You !

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. 

Stories and Picture's 

 
We need pictures and stories of our new chatters. It helps new MSer's to see that they can do it also. It helps to know your not alone. So please help others - we need your pictures and stories. They can be emailed to PWMS@peoplewithms.com . Or, anyone who wants to add Pictures or update their story, please do so.

.

 

This Week's Chat Star

Hemastat

 

I am a Female 65 years old Widow.   I am on no ABCR drugs. Or any other treatment. I am living in Texas With my CAT!  My cats name is Mischief !

I was Dx in 1972, But I know I had it since at least 1964. I was 28 years old at the time of DX. I am doing very well. I felt like I was in Remission for about 20+ years! Not so much lately.

I worked full time for many years!  This past fall was the last time I had a Relapse.

(more)

     
 

NEW BIRTHDAY PAGE 

 CLICK HERE CLICK HERE   

Upcoming Birthday:  

PeopleWithMS - Birthdays, Anniversaries, Etc.

Who will be next ?
Cindy March 19 TH
Norma April 7 TH
Debbie  April 13 TH
RonB April 20 TH

 

 * * * We need someone to keep track of our chatters Birthday's.  * * * 

If anyone wants to host a chat Birthday Party, we provide the room, we clean up! We will send out invitations. We all have birthdays, some have Anniversary's.  Help make a friend feel very important. We are all important in chat! Throw a surprise party for a chat buddy. Thank your best friend for being there for you! He or she deserves a party!

Book a room and tables for your ' Surprise ' Birthday party while there's still time by e-mailing
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 'World Renowned Chia Rancher ' )  PWMS@PeopleWithMS.com

 CLICK HEREFAMOUS  


Click Here 

to enterClick Here to go to Chat

our new chat

Click Here

Click Here to go to Discussion Boardto enter 

our new chat



 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.


Chat Coordinator!

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)

North America

http://PeopleWithMS.com/images/

UK

 

Down Under

Pacific

Mountain Central Eastern London Western Central Eastern
DST DST DST DST DST
8.00 7.00 6.00 5.00 0 8.00 9.00 10.00
4:00 PM 5:00 PM 6:00 PM 7:00 PM 12:00 AM 8:00 AM 9:00 AM 10:00 AM  
Deb & MrRED   5:00 PM 6:00 PM 7:00 PM 8:00 PM 1:00 AM 9:00 AM 10:00 AM 11:00 AM   Deb & MrRED
Deb & MrRED   6:00 PM 7:00 PM 8:00 PM 9:00 PM 2:00 AM 10:00 AM 11:00 AM 12:00 PM   Deb & MrRED
Kanga   7:00 PM 8:00 PM 9:00 PM 10:00 PM 3:00 AM 11:00 AM 12:00 PM 1:00 PM   Kanga
Kanga   8:00 PM 9:00 PM 10:00 PM 11:00 PM 4:00 AM 12:00 PM 1:00 PM 2:00 PM   Kanga

Contact us at PWMS@PeopleWithMS.com if you'd like to host on a regular basis. 


.

PWMS & MSGROUP4YOU working together :)

MSgroup4You
Many of you have met Marlene in chat she has a  MSN group! She is supporting our chat by having all members use our chat room. Please support her MSN group. You can have your own mailbox and have some real fun. They have a message board, and more. Check it out, please. Oh, and of course, FANCY NANCY is helping her set things up in that very special FANCY Nancy way.

ITS GETTING BETTER AND BETTER. MARLENE HAS ADDED A PETS PAGE AND JOKES PAGE.

Please sign up today !  


PWMS Welcomes MSer's from all over

MS DownUnder

MS Downunder

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.  And perhaps a few pictures.

Mentioning Stuff

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.

MS Canada

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. 

PeopleWithMS - Canada

COME ON CANADA - HELP US OUT HERE!


Rod's

Music

Shoppe

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 leachl@limestone.on.ca 


Poems

Inspirational pages called thePoetry Pages Click Here to go to Discussion Board

Please Email us with any poems you would like to share with us PWMS@peoplewithms.com 

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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. 

click here

 We will meet every Wednesday evening - check below for your local time 

EST CST MST PST
8PM-9PM 7PM-8PM 6PM-7PM 5PM-6PM

Recipes    

Click here

for Recipes

 

Check out all of the recipes on our web site that chatters have shared with us  
Click here for 

Healthy Eating 

Recipes

 

Please Email us with any recipes you would like to share with us PWMS@peoplewithms.com 


OUR MISSION

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. 


News

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.  

Now why Exactly do we have this Daylight Savings Time Stuff ?  

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 MRI

    * 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
This sounds like a promising possibility for those with Progressive forms of MS where the traditional medications have become ineffective.
Beyond Cool:   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.

Quantitative Testing For Sexual Dysfunction

Female sexual dysfunction (FSD) is highly prevalent (45-74%) in multiple sclerosis (MS) patients. This study used quantitative sensory testing (QST) to measure the loss of sensation in the genitalia. This method, which can also be used on men, is something that might be worth having done - if only for peace of mind.

Sexual dysfunction can occur for a great number of reasons (physical, psychological, pharmaceutical, etc.) and wreaks havoc on a relationship. Having medical proof that there are (or are not) sensory problems can help in accepting or treating the problem. Being able to say "it's not you, I just can't feel anything" and be able to prove it can be very useful in coping with this type of problem.

Hold the Monkey Embryos . . . . Cross-Species Stem Cells

Scientists have made monkey blastocysts through intra-species nuclear transfer - implanting monkey somatic cells into enucleated monkey ova. But this is the first time that a blastocyst has been established while using non-monkey ova.

``If we are successful, we will be able to apply the technologies to humans - making stem cells with animal ova - if society allows such an idea,'' Koo said.

As Koo pointed out, the interspecies experiments can in part solve some of the ethical debates surrounding the making of cloned human embryonic stem cells because they don't use human eggs.


 If anyone has anything they think ought to be added to the weekly news letter, please email me at deb@durgin.net.

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