progressive relapsing ms

MS Progressive Types: Living with Progressive MS

Vicki Health Guide May 26, 2009
  • Each of us has our own way of dealing with bad news, and an MS diagnosis is bad news. When someone is newly diagnosed, it is pretty scary. Some people bend over backwards to learn everything they can. Others just live with it awhile, hoping for the best. We all learn as we go along because living wit...

10 Comments
  • Lisa Emrich
    Health Guide
    May. 26, 2009

    Our beings are so much more than our physical, mental, and emotional bodies.  The story in The Diving Bell and the Butterfly shows us how much power there is in a mind and an eye.  Amazing.

     

    I like the use of my legs, but "I" am more than my legs.  The ability to adapt to a changing landscape is powerful.  As abilities change, tools...

    RHMLucky777

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    Our beings are so much more than our physical, mental, and emotional bodies.  The story in The Diving Bell and the Butterfly shows us how much power there is in a mind and an eye.  Amazing.

     

    I like the use of my legs, but "I" am more than my legs.  The ability to adapt to a changing landscape is powerful.  As abilities change, tools and therapies become more important.  Thank you for shining a light on the path, making it less dark and scary.

    • Vicki
      Health Guide
      May. 27, 2009

      Hi, Lisa,

      The Diving Bell and the Butterfly actually gave me hope, because when MS becomes too much of a prison for my body, I will still have my butterflies. We have always known it, but the movie articulates it for us.

      As science and technology develop more assistive devices, our minds develop assistive devices on a personal level, contributing to a continued...

      RHMLucky777

      Read More

      Hi, Lisa,

      The Diving Bell and the Butterfly actually gave me hope, because when MS becomes too much of a prison for my body, I will still have my butterflies. We have always known it, but the movie articulates it for us.

      As science and technology develop more assistive devices, our minds develop assistive devices on a personal level, contributing to a continued positive quality of life for those of us with little physical movement. I like your "shining a light on the path."

      Thanks for visiting, Lisa.

       

  • Michaelbgerber
    Jun. 18, 2009

    Again, excellent article. Thank you. 

    • Vicki
      Health Guide
      Jul. 03, 2009

      Thank you, Michael.

  • Merely Me
    Health Guide
    May. 30, 2009

    Well...what to say?

     

    I always learn something new from your posts...I hadn't realized about the different sized pupils.  I saw this in myself from a photo...I didn't realize this was connected to MS.  that is something.

     

    I like how you point out the realities but also give ways to cope and...I love all the resources you provide to other...

    RHMLucky777

    Read More

    Well...what to say?

     

    I always learn something new from your posts...I hadn't realized about the different sized pupils.  I saw this in myself from a photo...I didn't realize this was connected to MS.  that is something.

     

    I like how you point out the realities but also give ways to cope and...I love all the resources you provide to other folk in the MS community.

     

    I am looking forward to reading your next posts...keep 'em coming!

    • Vicki
      Health Guide
      May. 30, 2009

      Thank you, as always, for your positive comment.


      Yes, the pupil thing -- both Lisa and Julie had to have it pointed out.  I guess it's not something we think about.  I never did, nor have I seen it on a symptom list.  I thought it was worth mentioning.

  • David Madison
    May. 28, 2009

    I seem to react substantially differently from other people to finding I have MS.  Serious, debilitating MS.  I told my doctor I had it, but she did not think so.  After much testing, the results said I had it, which we read together.  She was nearly crying because she would have to tell her first patient he had MS; I was pumping my fist...

    RHMLucky777

    Read More

    I seem to react substantially differently from other people to finding I have MS.  Serious, debilitating MS.  I told my doctor I had it, but she did not think so.  After much testing, the results said I had it, which we read together.  She was nearly crying because she would have to tell her first patient he had MS; I was pumping my fist and saying, "Yes!  I told you so!"  I kinda like being right.

     

    Well, I was in nursing school.  Knew I could not make my living with my back all my life, and nursing paid well.  It would finance learning about astronomy.  When MS hit, it knocked me out of nursing, but oddly, also gave me the opportunity to learn astronomy.  Now I have been bedridden for almost two years, but in that time have also written 700 astronomy articles.

     

    Do I wish I could still walk?  Sure.  But I spend most of my time doing what I really wanted to do before I got MS.

    • Vicki
      Health Guide
      May. 28, 2009

      Oh David, I do enjoy your comments. Many of us kinda like being right.


      If I may borrow Lisa's phrase from her comment above, your path seems to be an aggressive, particularly cruel version of MS, but your shining light is your astronomy. How exciting - 700+ articles. I knew there was an interesting story in there.


      Another lesson from your story of course is...

      RHMLucky777

      Read More

      Oh David, I do enjoy your comments. Many of us kinda like being right.


      If I may borrow Lisa's phrase from her comment above, your path seems to be an aggressive, particularly cruel version of MS, but your shining light is your astronomy. How exciting - 700+ articles. I knew there was an interesting story in there.


      Another lesson from your story of course is the doctor. I know they must tire of patients who think they are able to self-diagnose because of all the information provided on the Internet, but you had more intimate experience of MS with your mother. There should be a course in medical school about when it might be a good idea to pay attention to the patient's instincts. Her tearful response to her diagnosis, though, reminds us how human doctors can be. Maybe she just did not want to believe it could be MS.


      Sorry. I tend to go on a bit sometimes. Please visit again.

       

  • Anonymous
    David Taylor
    May. 28, 2009

    LDN seems to stop most forms of MS that how my wife copes.

    • Vicki
      Health Guide
      May. 30, 2009

      Hi David,

       

      There is a lot of positive anecdotal evidence for Low Doses of Naltrexone (LDN), although at one time it was difficult to find outside of the UK.  I say, if it works. use it.  Your wife is very lucky!