Everyday Life With MS

Experience Tips Real Life Solutions

Tell Your Story Here


I want to know what your MS story is.

  • Are you someone with MS?
  • Tell me your diagnosis story
  • How do you cope?
  • What is your advice to others with MS?
  • Are you a caregiver? – What’s it like being a caregiver and how do you cope?
  • Is your parent someone who has MS?  How does that make you feel?
  • How do you cope with your parent having MS?
  • Are you a volunteer?  How do you help those with MS?

Tell me what it is you experience with MS, how you cope and what you can offer for advice.

I can’t wait to read what you have to say.

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May 1, 2010 - Posted by | Everyday Life, multiple sclerosis | , , , , , , , , , , , , ,

3 Comments »

  1. Here is some of my MS story: http://www.therideproject.com/category/my-ms-diagnosis

    Comment by Courtney | May 3, 2010 | Reply

    • Thank you!!!! We need to hear stories like yours to keep us motivated to continue the fight! Xo L

      Comment by elle0568 | May 3, 2010 | Reply

  2. This is just a brief condensed version up tp Jan of 2010 for further info visit my blog at http://walkwithmems.wordpress.com or my website at nextsteps4ms.org.

    Last year I walked in an MS walk for the first time and SHAME on me. Shame on me because I was diagnosed with MS approximately ten years ago now and this was the first time I ever done anything active about it. I would give a little bit of money through the United Way but I never did anything else. I often thought about doing something but there was always a reason not to. Something else was going on; it was too much effort to put together a team; I didn’t want to bother my friends; I hate fund raising; I forgot; and any one of a long list of other mundane excuses. The biggest reason, however, was that, inside, I was really scared.

    When I was diagnosed, I was told by the neurologist that the type of MS I had at that time was relapsing remitting. That meant that I would have attacks, but I would recover fully between each attack. Since I had only shown sensory symptoms so far, and no motor involvement, I would likely continue this way. And for a long while I did. I had periods of numbness here or there, maybe some altered temperature sensation, but nothing that I considered more than a mere nuisance. I continued to work at my job as a paramedic without my coworkers being any the wiser. The worst thing that MS did to me until that point was almost keep me from adopting my
    beautiful daughter, Ksenia, because of a Russian law which stated that people with certain types of MS were not allowed to adopt from their country. Luckily, it turned out that I hadn’t been diagnosed with one of those forms.

    After this brief scare that MS might actually have a real effect on me, I just went on with my life as normal. Deep inside, though, I always knew that there was a chance that it could all change in a minute and I just didn’t want to think about it. Hence, my previous lack of involvement with anything related to raising money or awareness for MS. If I became involved I would have to interact with people who hadn’t been as lucky as I had and watch them deal with MS-related challenges and disabilities that I pushed from consciousness and always hoped to avoid. I was afraid that it would be like seeing into my future and, as I said earlier, I was scared.

    Well, in the Spring of 2008, everything changed. I finished a shift at work, planning to return to duty in a week and a half. Little did I know that would be the last time I’d ever ride a paramedic unit.

    I was off for a week’s vacation in Ocean City with my husband, Ed, and our two kids, Ksenia and Gabriel. The second day, I felt like I had to pull myself up the stairs in the condo. I could tell that I was having trouble walking, though it took others a little longer to notice. My right leg became so weak and slow to respond that I no longer trusted myself to drive. It finally got to the point that we went to the local emergency room.

    That evening was the beginning of the hardest period of my life to date. Of course it was assumed that the MS was causing the symptoms and with proper treatment they would go away as they had in the past. That night, however, we also found out that I was pregnant with our precious little girl, Eliza. So now instead of receiving the typical treatment, I was told that I could not be treated at all because of the pregnancy. I deteriorated quickly.

    I went from having difficulty holding my nine-month-old, to the inability to feed him due lack of arm strength and endurance. I went from having trouble walking, to basically being an invalid, stuck on the couch, if there was no one there to help me. I needed someone to help pull me up off the couch and I didn’t even have the strength in my legs to lift my feet over the dividers on the floors between rooms. The only extremity I still had a fair amount of use of was my left arm. My mom drove a two-hour roundtrip every weekday for many months to take care of my son for me while I laid on the couch and couldn’t even hold him because I was afraid that my arm would give out at any time. One thing that still breaks my heart about that period is that I was unable to assist my daughter, Ksenia, is the search for her high school graduation dress.

    I was lucky that early in my pregnancy I met with a specialist who convinced my neurologist that I could be treated. After two rounds of treatment and one hospital stay I began to slowly improve with multiple setbacks along the way. Eventually, we had a happy, healthy, baby girl, and I regained about 90% of my functionality. However, without 100% recovery, I could no longer perform my job as a paramedic. So, after fifteen years, at a job I loved, I was forced to retire on medical disability.

    This is a road that is far from ending. While in California this summer, I relapsed. Though thankfully not nearly as severely as the earlier attack. As I sit here and write this and watch my son twirl in circles, I still consider myself one of the lucky ones. Now, however, I know that as one of the lucky ones I must do something to help with the fight to cure MS. My hope is to help secure a happy and positive future for myself, my family, and all of the others affected by this horrible disease. My little ones need their mother and I would love to continue to be an active participant in my children’s lives.

    Many strides have been made in MS research lately, including the release of a new drug for the treatment of leg weakness and many other hopeful experimental therapies not yet available to the general public. Without support and money from people like you and me, none of this would be possible. Because of our support the future holds much more hope for me, my family, and many other families like us.

    I have started a team called Next Steps to walk in the Columbia 2010 5k MS Walk.

    Comment by Debbie | June 4, 2010 | Reply


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