January 20, 2007
PWMS chat ! - Update
It was a great week in chat. Our busiest time in chat is 7PM - 10pm EST NIGHTLY ! We also have been trying to build up daytime chats again. We've got mid-day chats going every weekday. (see our chat schedule below ) Please join our hosts, they are the best ! ! !
Nancy is not only home from the hospital, she's already brought in her good friend, Hemastat ! We look forward to getting to know her as well.
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
PWMS Welcomes MSers from all over
Stories and Pictures
|Hi, my name is Lauri and I was diagnosed with MS in April of 2004. Below is a picture of me and my son, and below that is my daughter. I started on Avonex, and then after a year on that and at least two relapses and 4 new lesions, I was told that it wasn't strong enough, so they switched me to Rebif. I am trying to decide if I want to try Tysabri. In April of this year I went on Long term disability. Not sure what I will do in the future, may try one more time to work, part time, we'll see, haven't decided. (more)|
|Kanga||Kanga is off on vacation, but she sent us an excellent picture that you have to see. (more)|
|Lollipop||Story to follow . . . (more)|
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, 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.
This is about me and all my fun in life. I graduated from Architecture in 1983 and from Ottawa (Algonquin College), moved on to Kingston for Civil Engineering (St. Lawrence College). While at school in Kingston, I met a wonderful girl that is now my wife (18 Yrs this month). We loved life and freedom and both worked and traveled together every year. In 1994 we had twin boys, premature, but they are now 10 and healthy. They were 12 weeks early, 2-12 and 3-6. I have been Diabetic since 1970 and in 2001, I began having eye trouble. The Doctors determined that it wasn't diabetic related, but it wasn't until my legs got really weak, (I couldn't climb the stairs), I was admitted to a hospital in Ottawa (Canada) and they figured it out. Steroids put me back on my feet, but "Optic Neuritis" struck me and never left. >
I now have a "seeing eye dog" and we rarely stay home. I have enclosed a picture of me and Jack. I don' have one of us and the family. My wife and I have been together for 18 yrs and we have twin 10 yr old boys. We also have a cat, but she doesn't count. (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 - January 20, 2007 Day Chat Host London
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 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 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 p
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.
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.
We're starting a new set of inspirational pages called thePoetry Pages
Nancy has added a couple of new items (which should be up Sunday)
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.
Please help us remember to ask all chatters to sign the guest book. It's our only way of sending them our news letter.
This one link is to the mother lode 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.
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.
New Congress Passes Stem Cell Legislation . . . On To The Senate
This afternoon, the House of Representatives passed H.R. 3, the Stem Cell Research Enhancement Act, by an impressive vote of 253-174.* (For the record, last year's vote for H.R. 810 was 238-194.) Just prior to voting for H.R. 3, the House defeated a motion to recommit the bill, which would have placed severe restrictions on institutions where somatic cell nuclear transfer research takes place. This motion to recommit (sending it back to the committee for further consideration) fell by a vote of 189-238. The Senate is expected to vote on the bill within a few weeks. Click here for recent news coverage.
Your e-mails to Congress made a difference. If your Representative voted in favor of this bill, take a minute to call and say Thank You. Look up the official Roll Call here. Then, call the Capitol switchboard and ask for your Representative: 1-800-828-0498. Thank them for supporting stem cell research and its promise for people with multiple sclerosis.
We will continue to keep you updated on this legislation and on other important policy issues for people with MS. Thank you for being an MS activist.
* If every House member votes, it takes 290 votes (2/3 majority) to override a Presidential veto, and both the House and Senate must override a veto for a bill to become law without a president's signature. So it is by no means assured.
Washout Time Before Starting Tysabri ?
A fair amount of discussion last week centered around the ' Washout Time ' of other medications before switching to Tysabri. In other words, how long does it take for the concentration of another MS medication in the body to decrease to a safe level for commencement of Tysabri therapy. We've collected some useful links, below:
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
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