PeopleWithMS.com Newsletter


January 6, 2007

 

 PWMS chat ! - Update 

It was one of our best weeks in chat! We have gained many new chatters. Our Room Administrators are helping to build our daytime chatting, by hosting chats during the day. Please join them! Red and I now have Fridays nights to donate more time to our newsletter. We even sneak out for dinner once in a while! Some of you know my daughter Lisa AKA gemlady is back on a 5 Day solumedrol  IV. But doing great! We have heard Fancy Nancy is not feeling to well, Lets keep her in our prayers. New Years was one we will remember. It was fun!  

Our Wednesday evening Healthy eating support group went so well  we added 3 pages to our web site. You can find a print out journal, recipes, and a exercise page. 

click here

 We will Meet every Wednesday evening Check for time 

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

PWMS   Welcomes MSers from all over

Stories and Pictures

Mags has added a story and more pictures.  

Check It Out ! ! ! (more )

Vanesr

My name is Vanessa.  I am 48 years old with 2 adult children. I live in Pittsburgh, Pennsylvania. I have MS dxed 1989, unable to work since 1996. I have the most bravest man there is, since I told him all about my having MS it did not scare him away, he is the best. We have been together 10 years. My MS sx's are all the usual stuff. I walk with a cane in the house, scooter for outside use. My balance is affected and my leg muscles are weak. I do intermittent catheterzations daily.  (more )
RonB

ronb has been diagnosed with MS for three years, and started out on Copaxone.  It wasn't quite working out, so he switched to Rebif a year ago. Early troubles with vision, memory, and balance became 6 months of blindness.  But he's fought back, got his vision back, and still driving.  (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.
     
 

NEW BIRTHDAY PAGE 

 CLICK HERE CLICK HERE   

 * * * 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 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, one of our newer chatters, 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.  Vanesr flagged this interesting British site, which certainly seems worth a look.


Click Here 

to enter Click Here to go to Discussion Board

our new chat

Click Here

Click Here to go to Discussion Boardto enter 

our new chat


This Week's Chat Star

Marlene

 

WELL, AS THE STORY GOES... IN DEC. 2004 MY 16 YR OLD DAUGHTER PASSED AWAY VERY SUDDENLY. NEEDLESS TO SAY I WAS DEVASTATED WITH GRIEF. I RETURNED TO WORK 2 WEEKS LATER TO KEEP MY MIND BUSY. AS THE WEEKS PASSED I FELT THAT I WAS GETTING A GRIP ON MY LIFE. THEN IN JUNE OF 2005 I WAS OUT SHOPPING AND ALL OF A SUDDEN MY WHOLE RIGHT SIDE STARTED GOING NUMB. I FELT LIKE I WAS GOING TO PASS OUT, SO I HELD ON TIGHT TO THE BASKET I WAS PUSHING. (more )

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 - December 31, 2006
Day Chat Host London
LST
Eastern
EST
Central
CST
Mountain
MST
Pacific
PST
Monday Deb & MrRED 1 - 3 am  8 - 10 pm   7 -9 pm  6 -8 pm 5 - 7 pm
Tuesday Norma & Rich (Pegasus)  4 -6 pm    11 am - 1 pm  10  - NOON    9 - 11 am    8 - 10 am
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 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 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. 


Chat Connections Room 

Chat Sound Alert

It's really no surprise to land in an empty chat room -there are 24 hours in the day.  And it is also guaranteed that 5 minutes after you leave, someone else will pop in.  

Here's something you can do if you have speakers and are moderately familiar with Windows.  When you log into chat and discover no one to share your morning coffee with, don't give up !  Turn up the sound on your computer and stay logged in.  When someone else comes in, the ' Welcome ' sound will play.

(Pick an audicon 'soundie' off the "Music Note button' list to see if it's loud enough.)   

If you want to go do something else in Windows, MINIMIZE the chat window with a double click on the little underline box in the top right of the window.  You will still see the window listed on the start bar ('Tray').  When somebody comes in, click that window to open it again.

If People start using this, and find that the ' Welcome ' sound is an inadequate alert, give us an idea what might work better.

Click Here to go to Discussion Board " Tag . . . You're It ! ! ! "  Click Here to go to Discussion Board

Chat is always open. and guests are always welcome.  But they're never there when you log in !   The Chat Connections Room is intended to solve that problem.  It helps hook up people who want to chat, at whatever hour. . . 

When you come into the main chat room and nobody is there, double click on the Chat Connections Room listed in the column on the right side.  That will pop you into the room.  The last 10 messages from visitors are displayed.  Check to see if anybody else has recently popped in, looking to chat, and left a message.  Something like:

Nov 8 9:09 AM [CHUCK] I'M OFF WORK TODAY & HERE NOW .... GONNA HANG AROUND ON 'AWAY' IN THE MAIN ROOM FOR A BIT JUST IN CASE SOMEONE COMES IN.   I'LL CHECK BACK HERE BY 10:00.  SO LEAVE A ' TAG ' MESSAGES IF YOU'D LIKE TO JOIN ME THIS MORNING.

Nov 8 9:43 AM [JILL} TYPED YOUR NAME IN THE MAIN ROOM TO BEEP YOU.  NOBODY HOME, HA HA !  WILL BE BACK AT 10:00

 

 


Please stop by the MSSurvivor MSNsite to see what Ladycove and Jeffs have been up to.  It is an informative and fun place to visit.  While you are there, sign up as a member.  It's easy !  

PWMS & MS Survivors working together :) 

MS Survivors has a great new message board, and a whole lot more ! JeffS and LadyCove are working hard to add all sorts of neat features.  We are joining together with them to use their message board and some of those other neat-o MSN facilities. They are sending their members over to our site and chat. So we're teaming up to make the best use of both the web and MSN Group sites. Some of us work, some of us just don't have enough energy to keep up with it all alone. We have noticed that when MSERs  team up and work together on web sites, a message board, and chat that updated information flows more freely. 

 

Poems

We're starting a new set of inspirational pages called thePoetry Pages Click Here to go to Discussion Board

Nancy has added a couple of new items (which should be up Sunday)

What MS Feels Like

Who are the People With MS ?

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


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 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. 

Please help us remember to ask all chatters to sign the guest book.  It's our only way of sending them our  news letter.


News

Multiple Sclerosis Information Sourcebook Click Here to go to Discussion Board

This one link is to the motherlode of all link pages at the National Multiple Sclerosis Society.   

The Multiple Sclerosis Information Sourcebook provides up-to-date information about MS in an easy-to-use format. It includes answers to frequently asked questions, current information on treatments and symptoms, and descriptions of the social and psychological impact of the disease. The Sourcebook also provides references to other health and social agencies when appropriate.

Web Resources

These links are provided by the National Multiple Sclerosis Society for information only. The National Multiple Sclerosis Society has no control over the content or availability of external sites. Each link is to a bigger category of specific sites.

Healthy Living with MS

For a person living with MS, the road to wellness involves more than treatment of the disease. Equally important are health promotion and prevention strategies, a strong support network of family and friends, satisfying work and leisure activities, a meaningful place in the community, and adequate attention to one's inner self.

Keep informed about MS and exercise, food and diet, preventive care, alternative medicine, and specific health issues for men and women.


Take Action NMSS Logo

National Multiple Sclerosis Society | Advocacy 

New Congress to Address Stem Cell Legislation
Support the Stem Cell Research Enhancement Act

Take Action!

The new 110th Congress brings another significant opportunity to pass federal stem cell legislation and help us move closer to a world free of multiple sclerosis. The Stem Cell Research Enhancement Act (H.R. 3 and S. 5) has been introduced and is expected to move quickly through both chambers. In fact, the House has announced its intention to vote on H.R. 3 on January 11.

Now is the time to introduce ourselves to the new Congress and let the members know that MS activists support the Stem Cell Research Enhancement Act. The more we call and e-mail, the more we can ensure the voices of MS activists are heard.

Call Congress
As a constituent, your personal phone call to a member of Congress can make a meaningful impression. Take a moment today to call. Go through the Capitol switchboard at 1-800-828-0498 and ask for your Representative and Senators. When you reach their office, identify yourself and where you are from. Then use these talking points:

  • I’m calling to ask for your support of the Stem Cell Research Enhancement Act. Vote yes.
  • Now is the time to expand the embryonic stem cell lines available for federally funded research and move us closer to a world free of multiple sclerosis.
  • I’m an MS activist, and I urge you to co-sponsor this bill and vote yes to enact this important legislation. The promise of MS research depends on it.

These first few days of Congress will be busy and it is critical that we make a great first impression as an organization. Remember to be polite but firm. You might try several times before your call is answered, and don't be surprised if your Representative or Senator answers the phone.

Send an E-Mail
If you would prefer to send a brief e-mail, click above to take action. A thoughtful note can add emphasis to other constituent phone calls. In the event that e-mail information for a new member of Congress is not yet available, we encourage you to call instead.

Our Position
The Society believes that all promising avenues that could lead to the cure or prevention of MS or relieve its most devastating symptoms by repairing MS damage must be explored — including expanding the number of approved embryonic stem cell lines that are available for federally funded research. To help remedy the current federal policy, the Society supports this newly introduced legislation. The Stem Cell Research Enhancement Act allows new stem cell lines to be generated from embryos that have been donated for research purposes by people using the services of in vitro fertilization clinics, while establishing important ethical protections.
Click here for more information on our position.

We are encouraged that the new Congress has identified federal funding of embryonic stem cell research as a legislative priority, and we feel confident in its broad support with legislators and the public. Be sure to take action today, and thank you for being an MS activist.


LOS ANGELES (AP) Teri Garr is recovering from surgery to repair an aneurysm she suffered at her home on Dec. 21, her publicist said Wednesday. Doctors expect the actress, 58, to make a full recovery, Heidi Schaeffer said. Garr, who also suffers from multiple sclerosis, is alert and talking, Schaeffer added. Garr has appeared in dozens of films and television shows, including Friends Young Frankenstein and Close Encounters of the Third Kind.

Montel Williams is promoting the new prescription program 

" Partnership for Prescription Assistance " :  

https://www.pparx.org/

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 deb@durgin.net.

Want to receive our Newsletter ?

Visit our site and sign our Guestbook, including your e-mail.  Or 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: 

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