Desired Support Services for Multiple Sclerosis (MS) Sufferers

  • Last week, I posted Top Ten Common Myths about MS - Busted!! which received a good number of responses.  This is such a tricky disease and it's hard to generalize anything which applies to absolutely EVERYBODY.

     

    I believe that it's tough to know what we, as MS patients, REALLY want from our doctors, support organizations, media and advertising representation, government, even our fellow patients.  Do we want more help or less interference?  Do we want to see more wheelchairs or folks who look normal?  Do we want more funds to go to research or to direct patient support?  What do we really want?

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    (Side note: I was speaking with a PR person last fall who works in advising pharma companies in their approach in advertising campaigns.  He says that even they (the PR folks) are tired of how far pharma took the "climbing mountains and running marathons" attempt at being inspiration in advertising.  It's gotten out of hand and hopefully we will see less of this in the future.)

     

    At different stages of the disease, our needs and desires change, which is to be expected since our needs change at various stages of our lives, too.  Later this week, I will highlight MS support organizations here in the United States.  But first some questions for you.....

     

    1. What form of MS do you have? (ie. RRMS, SPMS, PPMS, PRMS)

    2. Do you work outside of the home? (yes, no)

    3. Do you use mobility aids most of the time? (yes, no, what type of aid)

    4. Have you ever taken advantage of ANY support services of NMSS, MSAA, MSF, MSfriends, etc? (yes, no, please explain)

     

    And here's the most important questions.

     

    5. What support services do you need RIGHT NOW which would make your life easier?

    6. What support services have you needed but which were NOT available to you?

    7. What support services have been MOST helpful and meaningful to you?

    8. What would you say to the president of NMSS about how MS affects your life?

     

    I really look forward to your responses.  Please make YOUR VOICE heard!!

     

    Lisa Emrich is author of the blog Brass and Ivory: Life with MS and RA and founder of the Carnival of MS Bloggers.

Published On: January 11, 2010