My Silver Lining

I was diagnosed with relapsing-remitting MS (RRMS) when I was 36, in the prime of my life and career as an athletic trainer. I tried all three disease-modifying therapies that were available at the time but unfortunately none were helpful to me. In 2003, I traveled to Northwestern University hospital in Chicago to enroll in a clinical trial. It was a bone marrow transplant study and even though the therapy had a high mortality rate, I was willing to take the risk to help better understand and treat MS; but I was not accepted.

That was probably the toughest day in all my now 17 years of battling the challenges MS presents; not just because I was not accepted into the trial, but because it was the first time I was told I had primary-progressive MS (PPMS) — I now know that I had PPMS from the start, but because it manifested so slowly, no doctor was able to "label" me with it right away. Hearing I have a form of MS that is chronically progressive and has no therapies felt like being told to “go home and make the best of it” because they had nothing to offer me.
 
According to Rosalind Kalb, PhD, a psychologist and vice president with the National MS Society, those of us with PPMS have a different experience — physically and emotionally — than other people with MS.  I now use a wheelchair to ambulate and because of this and other symptoms, I have lost my spontaneity. Yes, everybody has to plan their days, but I plan every minute of every day — which is exhausting.  
 
The silver lining to receiving my PPMS diagnosis on that visit to Northwestern was learning about a neurologist at Johns Hopkins Hospital who was doing some research that may offer me options. I met with the Hopkins neurologist and he connected me to clinical trials for PPMS. We live not far from the National Institutes of Health (NIH), a world leader in research that invests around $115 million in MS research annually.

The NIH started a therapy trial for PPMS but there was one significant caveat: it was a double-blind placebo trial — meaning I may or may not be getting the real medication. There were also the physical components of the trial: MRIs, lumbar punctures, nerve conduction evaluation, blood draws and more. Despite these factors, I enrolled in the study; to me, the possibilities of new treatments and a cure far outweigh the risks. Even if the study doesn’t specifically help me, maybe it can help others with MS. The study was recently extended and participants — including me — are now getting the real medication… unless Congress cuts NIH funding and the trial is stopped.
  
Last September, I told this story — my story — at a briefing on Capitol Hill for members of Congress and their staff. I asked Congress to continue providing funding for medical research so that people living with PPMS like me can gain access to treatments, and so that one day we can find a cure and end MS forever. I became the “face” of PPMS to remind Congress that what is decided on Capitol Hill has a direct effect on real people. I am not anonymous; I am not just a number. I am a person living and working who happens to have a chronic disease.


 
As we speak, Congress is finalizing the Fiscal Year 2014 budget. Use this easy online tool to share your story and urge Congress to fund MS priorities including medical research.
Tags Activism & Advocacy, Progressive MS      13 Appreciate this
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    27 Comments

  • LAURIE ELISE GARVIN   Jan 13, 2014 10:45 AM
    It takes all who are diagnosed their own time to share this information. I shared mine while I was teaching and performing. Now I share with my words and photos.
  • Jeff M.   Jan 13, 2014 10:51 AM
    Thank you for telling your story and for telling it to Congress. We all owe you.
  • Avatar
    hanyagordon  Jan 13, 2014 11:01 AM
    Yes, it is like being told to 'suck it up' when there is nothing that can be done. Stay Strong x
  • Clive   Jan 13, 2014 11:03 AM
    all the very best for your campaign hope that lots of people join you in your effort. I will share the link to Tim the MS Bear page on Facebook. I take part in campaigns in the UK and am aware that the more people involved makes politicians take notice.
  • Lynn Chambers   Jan 13, 2014 11:23 AM
    Thank you for reaching out, and advocating for funding research that will finally end M.S. We need everyone that M.S. has touched in their life to do the same. We all need to share the the various ways of making a difference. Let our voices be heard!
  • Marsha Michaels   Jan 13, 2014 11:29 AM
    I applaud you for going to Congress. I have endured MS for 27 years when I was finally diagnosed after twenty years (before the MRI)of slight primary symptoms. Once my legs were effected it's a battle everyday. I use a scooter to get around and have a life, but the falls leave me battered and bruised. I cannot begin to tell you or maybe I can, that funding should start at home. I wish you well.
  • Avatar
    Nana_of_the_north  Jan 13, 2014 11:30 AM
    Thank you very much for being our voice for ms. Your efforts are much appreciated. God Bless.
  • Nancy Bergstrom   Jan 13, 2014 12:34 PM
    Karen - thanks for telling your story, being in drug trials and most importantly being an activist! I know what you mean about the spontaneity-sometimes just planning to do things can be so tiring as well. My DX path started in 2000 and took about 3+ years - RRMS and use forearm crutches. You are a wonderful inspiration to me - Nancy
  • Marjorie Springer   Jan 13, 2014 1:04 PM
    Karen, you have done such an amazing job telling your story and all the advocacy through the National Multiple Sclerosis Society. Keep up the GREAT work. Marjorie
  • Tracy Morgan   Jan 13, 2014 1:22 PM
    Thinks
  • Ali   Jan 13, 2014 1:53 PM
    Great article. If you are ever in Houston,Tx, please let me know.
  • Ann S. Kenney   Jan 13, 2014 3:06 PM
    Hi Karen. Look at Endece.com. James Yarger believes that NDC1308 may help you so as long as permanent damage has not yet occurred to your demyelinated axons.
  • Karen Jackson   Jan 13, 2014 3:51 PM
    Thank You all for your comments. I do what I do to honor those who came before me to fight the fight (Doris & Linus) and for those who will come after me until we find a cure. I advocate and participate in trials because it is my contribution to the battle.
  • kwec7744  Jan 13, 2014 5:32 PM
    Karen thank you for your contribution to MS research. All of us MSers are in this together, worldwide, any discoveries made should be shared globally, and I believe that they are.
  • Diana Reisdorfer   Jan 13, 2014 5:59 PM
    I was just told about two weeks ago that I have MS.
    Sorry to say that I really didn't know anything about
    This sickness but I have done allot of research and it
    Is scary. I really don't know what to expect but I do
    Plan on doing what ever it takes to be independent.
    I do thank u and every one who want to do the same thing.
  • Diana Reisdorfer   Jan 13, 2014 5:59 PM
    I was just told about two weeks ago that I have MS.
    Sorry to say that I really didn't know anything about
    This sickness but I have done allot of research and it
    Is scary. I really don't know what to expect but I do
    Plan on doing what ever it takes to be independent.
    I do thank u and every one who want to do the same thing.
  • Avatar
    cindymz  Jan 13, 2014 7:18 PM
    Thank you, Karen, for your willingness to be an advocate for us. I, too, have PPMS. I was diagnosed in 2009. I am a retired teacher, and feel fortunate that I was able to get my career mostly completed before the weakness in my legs really became a problem. I look forward to the day when we have something that can help all of us with this disabling disease.
  • Jamie Davis   Jan 13, 2014 9:42 PM
    Thank you Karen! I was "lucky" to be diagnosed at the age of 23. Now that I am 36, I look back over the last 13 years and know that while research and the the drugs have come a long way, there is still a long way to go. I remember my husband, who is active duty military, and I being so scared of what the diagnosis meant and where it would take us. We were far from family and didn't know the first thing about MS. I hope that one day that that a person being newly diagnosed, no matter their age, can leave their doctor's office with a knowledge of what caused their MS and what treatment they can take that will stop its progression in its tracks immediately. Best of wishes to everyone. 😃
  • Diane Zyskowski   Jan 14, 2014 4:50 AM
    You go girl because there are alot of us out there that are backing u 100% for a cure and I am one of them.
  • rachel kline   Jan 14, 2014 6:56 AM
    Karen, you are an inspiration.
    Your ability to put a face to MS and tell its story is why people (and hopefully political leadership....) listen to you, believe in you and want to help you.
    Rach
  • Jennifer   Jan 15, 2014 1:34 PM
    I posted my comment off my phone n it chopped out the part where Isaid im 33 now.
  • Elizabeth   Jan 17, 2014 5:25 PM
    Thank you for your story, Karen. Thank you too for your efforts on behalf of all of us who share with you this often frustrating and disabling disease.
  • Tony   Jan 27, 2014 9:32 AM
    I certainly appreciate you and your efforts to spread the word Karen. I wish you the very best and hope you will be training athletes again soon.
  • ohiogirl-366  Feb 2, 2014 3:12 PM
    I am new to ms connection. I have been diagnosed with rrms but not so sure because
  • ohiogirl-366  Feb 2, 2014 3:12 PM
    I am new to ms connection. I have been diagnosed with rrms but not so sure because
  • Avatar
    Ldg1230  Feb 6, 2014 10:04 AM
    Hi, I was diagnosed in Feb 2008, I just turned 47 and I am a teacher! A teacher of children with special needs. And a Mom. Things happen. And, I had to realize that MS not only stands for Multiple Sclerosis but for Many Strengths. I am currently working behind the scenes. The district took my out of the classroom after 26 years of teaching children with disabilities and special needs. I am brailling. I am working behind the scenes. And, I love it. I am even hoping to get my National Braille Certification. I am blessed, after I realize, I have to find a new Normal, and not to fight my body and live with the past, but to embrace the here and now. I just wanted to share.
    God Bless everyone, and look for your many strengths-they are there, they may be hidden, but they are there,
    Lisa
  • Avatar
    cmfender12  Feb 9, 2014 1:11 PM
    So positive! Awesome! God works good from bad every day. Thank you for your post! God bless you!