MS SoftServe’s New Blog!

By popular demand (and that it finally occurred to me!) MS SoftServe has a brand new blog.  You’ve heard about the site-to-be; the place where you will be able to learn about your unique version of MS. (If haven’t heard, check out this video that tells all; or at least most. ;))

Now, the inquiring minds who want to know about our progress, don’t have to throw their hands up and wonder out loud “When is this site gonna happen?”!  They (you) can just come here and find a wealth of information that will include, but not be limited to: progress reports, accomplishments, ideas & random comments from the site’s founder, details of our future plans, grants we are applying for AND most importantly-  a space for input. Because this site is dedicated to meeting the needs of every individual living with this annoying disease, we want to hear what you would find most useful in this dynamic tool.

MSSoftServe will be the first site that allows you to determine what information you want to know. No more learning about things that may never affect you and just fuel your fears. ‘Cause let’s face it, one the hardest things about this disease is that we have no idea what tomorrow with bring.

So let’s have some control for once! When MS SoftServe is live, you will not only be able to control the info you are exposed to, you will also have the option to learn the way you want. We all learn best in different ways. For me, I need visuals; words alone immediately slip from my memory. (Which explains why I can’t remember a book I read last year!) But when something is explained visually – I’ll never forget it.  Because everyone is different-  this site will let you choose what is best for you. There will be options to learn by reading, watching animations or videos (of MS nurses & people living with it) and listening to recordings of people explaining concepts of the disease.  You will have the option to take and store notes digitally and record yourself explaining that symptoms that seem to defy words; and all of this can be emailed, downloaded (to your PDA or ipod), collected in your own online store-house of information. And get this:  you will be able to create your own URL that explains your version of MS. How cool would that be to send friends and family to a site that helps them understand your specific situation. (and doesn’t freak them out either!) The list goes on…  learn how to educate different people in your life (colleagues, kids, parents etc.), choose the language level you want to use (everyday, scientific, or simple straight forward), or select areas for tips on communicating with your doctor, understanding the news… and on, and on.

So that is it in a nutshell. Seeing this project to life is going to be an exciting and satisfying ride.  Hop in the back and come along!

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8 Comments

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8 responses to “MS SoftServe’s New Blog!

  1. This is intriguing what you have started. My husband, the optimist in the family, does not have MS, (but I’ve had it for over 30 years) and is busy researching CCSVI and its relevance in finding a cure through the venous insufficiency route. I will tell him about you through e-mail.

    Are you familiar with C.L.A.M.S.? It’s Richard Rowell’s website in the northwest. Check it out.

    • Thanks for your comment Jacqueline!
      I’m also married to the eternal optimist (a helpful trait when marrying a woman with MS, I’m sure you’d agree!) I’m not yet familiar with CLAMS but will definitely check it out. Thanks for the heads up on that… and good luck with the CCSVI searching that your husband is doing. I am optimistic but I err on the side of caution… and will happily wait and see how this plays out!
      Thanks for your input… Keep it coming! It’s the only way MSSS can serve each individual living with it.

  2. Correction: it’s CLAMS – Computer Literate Advocates of Multiple Sclerosis.

  3. Well I guess here is where I say Congrats! ya finally got SOMETHING for us eager MSer to sink our teeth into until the site is up and going, lets hope this gets lots of attention and feedback from your audiance as well as your “Blogger” (hehe)

    Now I have a suggestion that may or not be of interest to others, “part” of MY MS is leaving me with one leg that doesn’t work just right and the other leg getting weaker and weaker, so I am pretty much bound to my power chair(hand tremors disallow for a traditional wheelchair)
    needless to say I have MANY questions for those whose disability involves the lower extremitites as well as some bowel and bladder issues.
    I don’t have a Phsy therapist or an Occ Therapist so the muscles are wasting, edema is a problem as well as tightness and tremors (spacicity?). So Im wondering if there IS anyone else out there that may be dealing with some or even all my problems or who has suffered with them and having “lost” lower half completely…How did they adjust? What tricks and tips might they have for a person living in an “older” home who cannot afford to even get a ramp to get outside, let alone the high cost of renovations to make the home more “wheelchair accessable”? These and so many other questions plague me night and day,literally, so any help would be extremely appreciated. Possibly forums dedicated to differing levels of MS as well as differing symptoms. I like your idea of “seeing things, tends to stick with ya more, I myself have trouble comprhending what I read, so if there is no “visual aid” I tend to use my screen reader to read it to me at a pace I can comprehend. Troule is, it’s not all that great at pronounciation and it tends to “spell CAP and websit names, even if it’s a word or a link (eg would be http:www.gabi’sfavoritesites.com) it would spell that whole thing out and sometimes it’s anoying so posibly a built in screen reader that we can change from male to female and slow down or speed up as needed. One that would KNOW how to say website names instead of spelling it all. ok enough of my ramblings I hope that maybe something I said may have sparked an interest, maybe not, but it was/is just something I wanted to “share” Thanks for your time and for reading!
    Gabi

  4. sorry bout the typo’s hope you understood what I was saying/meant.
    Again, congrats Amy, and keep up the great work your doing!

    Gabi

  5. Crystal Chauvin

    Hi Amy!!!!

    Your MS SoftServe has came a LONG way since it’s beginnings!! I remember you talking about it in DC (I was one of the ppl. with MS that went there & before to NY). You are doing a superb job! Congrats, girl!!

    And Gabi, I can relate a lil. to what your saying. My right leg is sooooo slow!! My left is also, but not half as bad. In about ’07 I was using nothing. Now it’s progressed to using a cane & a lot of the time a walker. I had to drop out of my nursing classes. But we never know what’s around the corner. Right now, I just started on the pill, Ampyra, which I take twice a day. Hopefully, it’ll help. We’ll see.

    Thanks again, Amy!! You’ve been a help! And tell your girl, (Maddie?) and hubby that I said hi!!

    • Hi Crystal! I certainly remember you from our steering committee days! Sorry to hear about your challenges; I’ve had my share too, since we were in D.C. I’m expecting to start Ampyra as well. Keep me posted on your response. And yes, good memory, my daughter is Madeline! Keep checking in here for updates on our progress. If you subscribe you won’t miss anything!
      All the best to you!

  6. Connie Nichols

    Amy, you have indeed come a long way. I am happy to have been a tiny part of this, and will be supporting your efforts for a long time to come.

    This is a valuable resource, and I am recommending it to a few newly dxed friends.

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