PeopleWithMS.com Newsletter

April 23, 2004


PeopleWithMS Welcomes 

Chat is jumping most every night starting 7PM EST.  Promptly ! ! !  In addition, Muff is often in during the day, so stop by and say Hi if you are on-line.  Share is also supporting us on Mondays from 1:00pm EST, and various other times as her schedule permits.

Lesley Anne has joined us from Toronto, Ontario, and sent us a nice Story and Picture so you can get to know her.

JackIL has finally gotten his scanner replaced and sent us a spiffy picture to go along with his fine story.

blairman, from Kingston, Ontario, a familiar chatter to old-timers, from JJ's and other MSN chats, stopped in for a visit.  He was dx'd in 1987, is chronic progressive.  

Judy is back from a great, but tiring, trip to Florida.

SpiceyGrannie also returned from a separate, equally great, but tiring, trip to Florida.  

Delbert should be leaving Washington state and entering Idaho as you read this, and moving right on to Montana for this week. WheelsofHope needs your support ! Track his progress across the 48 continental United States; http://www.wheelsofhope.net/  

PeopleWithMS.com needs chat hosts ! ! ! Donate a couple hours during the day or evening to host, on a regular basis, and we'll make you famous !  If your focus is a particular topic or aspect of MS, just let us know and we'll post that in the Newsletter, too.  

Share is joining us as a new mid-day host on Mondays @1:00pm, EST and popping in at various other times as her schedule permits.

Muff continues as our stalwart host for many hours during the day.  Just waiting for your visit.  Whenever you see her in chat, with an afk next to her name, she's probably off making herself some tea.  Just say hi, and she'll pop back.


New Stories and Pictures

blairman

from Kingston, Ontario, a familiar chatter to old-timers, from JJ's and other MSN chats, stopped in for a visit.  He was dx'd in 1987, is chronic progressive.  (more )
Lesley Anne

Hi...my name is Lesley Anne, and I have had MS for 22 years. I live in Toronto ,and have been very fortunate in my life. I have a great family. and thank god each day for what I have. There have been some bad times, of course....and some changes in my life due to the MS, but I try and keep a positive outlook and a good sense of humour helps a lot too...

I came out of remission three years ago....and now use a cane when I leave the house...I do miss not working, but I keep myself busy with the computer, and talking to others with MS. I love reading, cooking , music and knitting...not necessarily in that order..

Because of MS , I have had the opportunity to meet and get to know so many great people going through the same thing as me. I look forward to getting to know the people in this wonderful group which I have just recently begun coming to. (more )

Jack

 

My name is Jack Halley and I live north of Chicago and have R-R MS. Back at the outset I didn't have too many symptoms but ended up taking ACTH from an infusion pump in the hospital for a week or so once a year at the beginning. Later on when Solumedrol came became the med of choice, went in and received it IV at the hospital. Since starting Avonex I haven't had an exacerbation since 5/1/98. My 34 year old lovely and energetic wife that I was with for 15 years and married for ten passed away and left a void in my life. I try to not think about it and just move forward as we all have to do with MS. I workout with weights still and stay busy so not much time for reflection. Some personal notes............ I was a captain in the Army, have 6 years of college, Scuba diver, Private pilots license etc. Just to give a look into my private life......Hugs to all and pray for a cure (more)
ThisCouldBeYou

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Anyone who wants to share there story and picture can have their name in spotlights right in our weekly newsletter.  Please send it to: PWMS@PeopleWithMS.com

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.

The Expanded Disability Status Scale (EDSS)

Kurtzke

MUFF 4/21/04
The EDSS is a classification scheme (Rating Scale) that insures all participants in clinical trials are in the same class, type, or phase of MS. It is also used by Neurologists to follow the progression of Multiple Sclerosis disability and evaluate treatment results, for similar groupings of people. This is one of those basic measurements used in the diagnosis and tracking of the progression of disability.  

News Sightings

The Other Half of the Brain

Scientific American

MrRED 4/23/04
Brains - what's in them.  Scientific American presents a fairly accessible article on brain cells, and some new findings on how things might work in there.  Worth a read if you are comfortable with mid-level scientific documents. 

Antegren reduces development of chronic lesions

BostonCure.org /PubMed

MrRED 4/20/04
BostonCure summarizes nicely the results of some obscure technical studies of Antegren in it's Phase III trials.  In essence, the results are quite similar to those found for Copaxone, in reducing the persistence of lesions by 50% compared to a placebo.  Very promising news.  Interestingly, a similar trial of interferon 1-b in secondary progressive patients showed no such reduction.  Quite honestly, you don't want to read the medical abstracts, but BostonCure's summary is an interesting teaser for the future.  

Serial MRI's and Inflamatory Lesions

National Library of Medicine

MrRED 4/16/04
Serial MRI's of 62 people followed them from early, possible MS diagnosis through 18 months or until clinical diagnosis.  Inflamatory lesions in initial MRIs were shown as a predictor to clinically definite MS.  This is another tortured medical abstract, but the results are significant. 

New Information

JackIL attended an MS seminar in Chicago, IL  and came away with encouraging news that they are working feverishly on re-myelinating nerves.  Any progress along these lines is clearly oriented towards a cure, not just halting progression.

REDnDEB attended an MS seminar in Hartford, CT with Dr David Smith of Tufts University, and David Lander (aka Squiggy).  Dr Smith's presentation of the brain and MS was a refreshingly down-to-earth explanation of MS.  His analogy of the brain as a loaf of raisin bread was a perfect example;  in two slices (MRI's) of the same loaf, or of different loafs (ie, different times) there may or may not be raisins.  

On Antegren, Dr Smith noted a few interesting things.  That it was anticipated to be generally available before the end of the year.  That it was generally viewed as being a combinational mediation with one of the other CRABs.  That it wasn't clear that insurance companies were going to be hot on the idea of a person using two expensive medications instead of one.  

David Lander, author of "Fall Down Laughing", had a great, upbeat presentation - delivering a hopeful, positive message.  One of his great stories was that of his proposed promotion for the NMSS on the need to get on an MS medication if possible;  "Shoot up.  Or fall down !"  (They didn't bite on that one.) And visit his site:  http://www.DavidLander.com/

Funny Stories in Chat  

Lesley Anne  shared a funny story with us this week !

SHE  WENT TO A FRIENDS HOUSE....

 WHEN SHE GOT HOME SHE NOTICED SHE HAD ON 2 DIFFERENT SHOES

THE DOGS JUST SHOOK THEIR HEADS AND WALKED AWAY.....


Tips and Tricks

The simpler things - overlooked and under-appreciated time and labor savers. 

Dry Mouth and Sores 

  • It seems people on lots of meds have chronically dry mouths and even sores inside, so here is what i learned while I was on cyclophosphamide.... Alcohol and Sugar are bad for a dry mouth...there is alcohol in most mouthwash -> the solution is BIOTENE tooth paste, mouth wash, and any sugarless gum that "won't stick to dental work"...that should read "or dry teeth" :-) It is more expensive but well worth it for the relief ! Even Walmart carries it, it is about $10.00 for the toothpaste and mouthwash but they last about 2 weeks. Also, if your tongue is always coated with white or brown, tell a doc at once, the best Rx is Mycelex lozenges 5xdaily, but its still lame....BIOTENE adds extra help ! Susan

  • Orajel has a new "Dry Mouth Moisturizing Gel" that not only helps but doesn't taste too bad either :-) Susan

  • At most drugstores you can ask where they keep the "artificial saliva" ..yep, they've got it and it helps but squirting fake spit in my mouth somehow doesnt seem quite right :-) Susan


  • I put men's size 13 knee high sweat socks on the arm rests of my power chair.  It helps with the intense heat here (in Nevada), as the arm rests are black vinyl and get hot.  So I slide the socks on the arm rests and it helps so you don't burn your arms.  Muff

  • I use a barbeque wagon grille cover to cover my power chair when it must be left outside in the weather. Muff  

  • I also found a great use for OXI CLEAN. I put 1 scoop in the toilet bowl and swish it around. It does two things at once; cleans the bowl of hard water and rust stains, and removes skid marks from the last power dump.  LOL Muff  

  • I put little square Velcro tabs on the four corners of my wheelchair footrests.  Then cut a rubber-backed mat into four equal pieces and attached the matching velcro to the mat.  Instant Presto !  Padded footrests!  And cool.  Muff  


New on the Website

DreamChat Trivia (repeated by popular demand)

  • How do you do those neat little smileys and pictures in the text? Easy, here's a Cheat Sheet:

:) Smile   :* Kiss
:( Sad >-- Rose
;) Wink <love> Love
;} Wry <strobe> Strobe
:p Tongue <nuke> Nuke
:o Gasp <boom> Boom
:# Mad <star> Star
  • How do I copy and paste something?  Mark it as you usually would with the mouse.  Then use CTRL-C to copy it, and CTRL-v to paste it in the message window.

  • I'm a member.  I uploaded my avatar, and nothing happened.  What's up with that?  Even if your avatar is the specified 50 * 50 pixels, and no bigger than 15KB, there is no confirmation.  Apparently because DreamChat personnel review all permanent member's avatars to make sure they are acceptable.  (Whatever that means.)  If they are, they send back an approval in a day or so, and the next time you sign in, "poof" your new avatar appears.

  • That DreamChat Discussion Board . . . . . is a real nice idea.  However, visitors have discovered, as we did, that you must be a DreamChat Community Member to post.  That's not too nice.  You can visit in chat as often as you like, for free, and there's no reason you should have to pay them to express your opinion.  So we're thinking on workarounds or alternatives.  If you have any suggestions of non-commercial Discussion Boards or Forums, let us know.    

News Letter Archive

Missed something from an old Newsletter?  Find it here !

4-23-04 4-16-04 4-10-04
4-2-04 3-27-04 3-20-04 3-13-04
3-6-04 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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