PeopleWithMS.com Newsletter

February 28, 2004


PeopleWithMS Welcomes 

Chat is growing through the dedication of our regular chatters and new visitors. Thing are jumping most every night from  7PM till at least 12AM EST. 

Our Marie will be available for chat starting this week on Monday Mornings from 7-11 am EST, 6-10am CST 

We want to again stress that people are welcome anytime in chat. In chat we can never have enough information. 

Alanisb (Ali) has joined our merry chat group.  We look forward to her picture and story.

And prepare for Jack speeding in with his racy new "big-iron" PC any day now.


New Stories and Pictures

Marie

Nurse Marie is donating her time to be in chat, answering your questions, Mondays, Tuesdays, and Thursdays at approximately 7:00pm EST.  And starting Monday, 7-11am EST.  Thank you, Marie !

MUFF

Muff aka Terri is also donating time in chat with us. She has much information on obtaining medical  and general financial support. She also has a wide range of information regarding general disability issues. Just ask and she helps! Muff will be starting a "Call List" for support.  (details to follow in another e-mail).  Thank You Muff! 

Donna

aka Spiceygrannie

 

I am a 50 year old female, diagnosed with MS in March of 1989. In January (actually New Years Day) 1989... my husband left for his after noon shift at work.... When he arrived back home some 12 hours later... I was still in the chair I was in when he had left for work....as when he arrived home after his shift;... I was not able to walk or talk at that point and the doctors in their infinite wisdom decided that I had had a stroke... it took 3 more very difficult months of hospitalization and hundreds of tests to finally prove that I had MS.... NOT A STROKE.......what a relief!!! I was at that time issued a cane and a set of instructions to learn how to use the cane properly.... By September of 1989 I was completely incapacitated. Bedridden , Incapable of taking care of myself. .. In a wheel chair.. unable to feed myself.... bathe myself ... unable to do any everyday functions of everyday life. (more)

Judy

My name is Judy. I have a much longer story to tell you but this is just a short version. I am 49 years old, married 30 years, 2 boys, 30 and 26, 2 grandsons, 7 and 3 1/2. My husbands name is Reed and he is also my best friend. I have had MS for 13 years and have been on betaseron for a little over 10 years now and I am doing great. I have been through hell and back but with the support of my family and my positive thinking, no one can tell I have MS. I refuse to let this monster get me and I know most of you feel the same way I do. We are all in this till the end...So lets keep smiling. (more)

New Link Sightings

Every week we'll be adding new link sightings which may be of interest, as reported by our visitors.  This will highlight new links you may want to investigate, before they disappear into the obscurity of some huge link listing.  If you come across any site which you think may be of interest, please e-mail us PWMS@PeopleWithMS.com with the site address and a brief description of what you found interesting on the site.  We'll include it in the next Newsletter.

Complementary and Alternative Medicine (CAM) NMSS - Living With MS Marie ** 2/26/04

A collection of links from the National Multiple Sclerosis Society

National Center for Complementary and Alternative Medicine ** Marie ** 2/26/04

Quite an extensive US Government site on Alternative Medicines.  

Mood Changes. Depression Screening ** Marie ** 2/20/04
Free Depression Information ** Marie ** 2/24/04
National Foundation for Depression ** Marie ** 2/24/04
Depression and Bipolar Support Alliance ** Marie ** 2/24/04
Depression Alliance UK ** Marie ** 2/24/04
Depression About.com PWMS ** 2/24/04
A continuously updated page on the subject.
If you are thinking about suicide.....read this first Becky ** 2/24/04
"If you are feeling suicidal now, please stop long enough to read this. It will only take about five minutes...."
HealthyPlace.com PWMS ** 2/24/04
This is a web site for mental illness, but they do focus on depression.

News Sightings

MSSA Expands Reach of MRI Institute Program Yahoo Finance PR Newswire PWMS 2/26/04
The Multiple Sclerosis Association of America (MSAA) has announced the expansion of MSAA's MRI Institute - a program designed to help financially challenged people with multiple sclerosis (MS) pay for MRI tests. 
Marijuana Inhaler Coming to the UK Medical News Today PWMS 2/26/04
An inhaler that dispenses medical marijuana in mist form (mainly aimed at MS sufferers) is in the final stages of testing (by UK Department of Health). The inhaler is called Sativex.
A Photographic Essay on Life with Multiple Sclerosis DEMOS Publishing Co. PWMS 2/26/04
"In creating her new book, 'My Story: A Photographic Essay of Life With Multiple Sclerosis', Davis learned a lot more about MS and the people who have it. Thirty-one of them -- and many of their caregivers -- join her to trash stereotypes, confront fears, offer hope, tell the truth and put 32 faces on a mysterious illness that is often misunderstood."
-- San Francisco Chronicle      Sunday, February 15, 2004
NPR "Fresh Air" interview of Richard Cohen National Public Radio PWMS 2/24/04
"NPR recently aired an [1]interview with executive TV news producer Richard Cohen, who has been working and living with MS for 30 years (imagine covering events in war zones while legally blind!).  Follow the link above for NPR's Fresh Air interview.  Cohen's also written a book entitled, "Blindsided: Lifting a Life Above Illness: A Reluctant Memoir" which is available at Amazon and other booksellers."
Danish Study on Longevity and Mortality with MS MSNews PWMS 2/24/04

A study that looked at over 9000 subjects diagnosed with MS since 1948. The median survival time from onset was 10 years shorter for multiple sclerosis patients than for the age-matched general population, and multiple sclerosis was associated with an almost threefold increase in the risk for death. According to death certificates, more than half (56.4%) of the patients had died from multiple sclerosis (what does that mean?). 

New Data Challenge Theories Of Multiple Sclerosis

Intellihealth

PWMS 2/23/04

Everybody knows the immune system goes haywire and attacks myelin in MS.  This study suggests it may instead be the brain cells that produce myelin which are dying.  A fine medical distinction, but explained in layman's terms.

Stress Disrupts Sleep in More Ways Than One

WebMD

PWMS 2/23/04

Stress Alters Sleeping Patterns.  

At Home with MS

WebMD

PWMS 2/23/04

Some tips from WebMD on how to cope.  Sure, you've heard most of these.  But there only needs to be one idea you haven't tried, or meant to do.....


New Information

The National Organization for Rare Disorders (NORD) provides a wealth of information.  

Of special interest to People With MS are the support programs provided for low income people to get the medications they need.  If you or someone you know is in this situation, check it out ! ! !


New on the Website

Chatters reported an extremely annoying problem with old chat text popping up. We've identified that problem as having to do with not clearing Internet cache. The key is to go to Internet Settngs -> General -> Settings and make sure pages are automatically checked for new versions.

Another annoying variation of the same occurs in the text entry box when some combination of Space, Tab, and Backspace is used.  The exact sequence hasn't been identified, so feel free to play with it if you'd like.  So far, the best resolution is to erase the stuff in that text box and continue.  

Muff identified the new Google Search Bar as containing a Pop-Up blocker.  This and other browser add-in features should be suspected if you know of a chatter having access difficulties.  

If anyone wants to share there story and picture please send it.

Still wrestling with users problems getting into chat. Thank you for reporting every problem. Its like diagnosing M.S. every little problem helps !

News Letter Archive

Missed something from an old Newsletter?  Find it here !

2-28-04 2-21-04 2-14-04
2-07-04 1-31-04 1-24-04 1-17-04

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