ms4tune

Sharing some of my MS experience

One good thing about MS

One of the good things from my diagnosis of Multiple Sclerosis (there are a few!) – it led to my getting involved with the National Multiple Sclerosis Society in a variety of ways.  The Women Against MS Luncheon (now called MS Women on the Move) launched locally in 2005, and I attended the initial launch.  I was so impressed that the next year I became a member of the planning committee.  In 2007 and 2008, I had the fortune of co-chairing the luncheon — a wonderfully empowering experience.  Every year the luncheon has been increasingly successful, and I am very proud of my involvement in this wonderful activity.  Each year 500 (in 2005) to 800 (in 2008) women come together for a delicious lunch, great entertainment, and to learn the latest research information about MS, its causes, treatment and potential cures.  Not to make a commercial (!), but this is one way that I have opted to manage my own feelings about this intrusive disease, and to engage in helping to find a cure.  If you or someone you know would be interested in this activity, check it out online through the National MS Society (www.msandyou.org)

 

I recently learned about a dear friend’s cousin who has had MS for over 25 years.  She is over 60 years old, lives in NYC on her own, and over the years has received a significant amount of support from the MS Society.  She has accessed resources that I was not familiar with: monthly house cleaning, regular rides to her doctor appointments, and other assistance – things I had not known were available despite my earlier involvement with the Society.  I have struggled with how that could happen, but now believe that it is mostly my own fault.  For the first two years following my diagnosis, I was physically able to get around on my own, had no real handicap to speak of, and did not need much (any?) direct assistance.  Now, things have really changed for me and my family, and I need a lot more help.  This is incredibly difficult for me.  Before – even with the disease, I was a hard-charging, self-sufficient dynamo, an active co-leader of my family and a person whom many of my friends sought out to answer questions about the latest places to go and things to do.  Think of a “Sex and the City” type of girl.  This past year has brought that image crashing down.  I have heard that the disease can take many turns and be quite unpredictable, but I really had no clue.  I cannot walk without a walker, have difficulty climbing the stairs, and cannot drive my car.  The answer to my prayers is taking a lot longer than I ever expected.  I have recently renewed my hope that my answer is coming…. 

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December 15, 2008 - Posted by | African American health, multiple sclerosis, National MS Society, women's health

4 Comments »

  1. Hi Linda,

    Welcome the MS Blogging Community. It’s very nice to meet you and apparently we live in roughly the same area. I live in northern virginia and msandyou.org is the website for the DC chapter.

    Click on my name and you will be taken to my blog. I will be posting a welcome to your blog and a few other new ones I’ve recently found. Look forward to reading more of your writings.

    Comment by Lisa Emrich | December 17, 2008 | Reply

    • Thank you Lisa,
      I appreciate your help on this and will follow up on the links you have provided. I may be changing my blog – I am just learning about the technlogy and may have some things I would like to adjust, so please keep reading!

      Comment by sistermom1 | December 17, 2008 | Reply

  2. Hi Linda,
    Welcome to the MS blogosphere. I’m sure you will find a lot of support here.

    I, too, turned to the NMSS when I was newly diagnosed in 1981, and began volunteering in Client Services for the Greater Washington Chapter. For the sixteen years that I either volunteered, or, later worked (part time) there, there wasn’t a lot of co-mingling between Services and Development, so I can understand how you could miss knowing about all the programs your chapter had available to you, especially when you didn’t have need of them.

    I imagine it must be especially difficult for you as your MS seems to have progressed a lot in a short time. When I was newly diagnosed I was catapulted into a wheelchair within weeks of leaving the hospital with a diagnosis. It took two to three years before, through hard work, luck and the grace of God, it became an invisible disability, and stayed that way, for the most part, for the next 16 years. So, my unasked for advice to you is this: Never give up; join an exercise program, and do your very best to maintain your positive attitude.

    Be well,
    Webster

    Comment by webster | December 17, 2008 | Reply

    • Thank you so much for reading my blog and leaving a comment. It is a pleasure to meet you and I really appreciate your encouragement. Please keep reading my blog – I am just getting started and would love to hear some feedback from someone outside of my family!

      Comment by sistermom1 | December 17, 2008 | Reply


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