How I Use My Voice for Better Care

As I journey past the 30-­year mark of my life with multiple sclerosis, I am profoundly grateful for the research advances that have taken place since my diagnosis. They allow people in the MS community to hold on to hope while living with an unpredictable and incurable disease.

In the dark ages of my diagnosis I felt scared and alone. With no FDA-approved medications and the internet in its infancy, I didn’t know where to turn. My world went from living color to black and white.

From the angst and loneliness I felt, along with the absence of a treatment to control my disease, I became angry and frustrated. How could I possibly be proactive about my health when the medical community could only recommend I go home, rest, and call if I had a flare-up? My future looked bleak.

I was desperate to stay as healthy as possible, particularly after giving birth to my beautiful son. I turned to my nurse practitioner for guidance on how I could be proactive to make a difference, supporting faster and better research. I was blessed to be at a MS comprehensive care center whose founder was my nurse practitioner, the incomparable June Halper (CEO of the Consortium of Multiple Sclerosis Centers, CMSC). June was excited about a new registry being created specifically for MS patients: NARCOMS. By simply answering questions about my MS life, I’d be able to do my part to change the research landscape for the MS community.

Over the past 20 years NARCOMS (North American Research Committee on Multiple Sclerosis) has built an active international registry of more than 38,000 individuals with MS who report twice annually on their lives with MS by completing a simple survey. The registry’s mission is to facilitate multi­center research to lead to more effective treatments for MS.

I’ve been a participant in NARCOMS since its inception. Its confidential survey offers a way for me to use my voice, and that means everything. When I receive a NARCOMS email to remind me to fill out my survey, I am thankful and excited. It gives me a sense of pride to know I’m doing something that may lead to better medications, a better quality of life and, who knows, maybe even a cure.

Questions asked in the NARCOMS surveys range from how I’m feeling and what medications I’m taking to whether I’m using alternative medicines and what physical or emotional limitations I’ve been experiencing. If I don’t wish to answer a question, I don’t have to — only those I feel comfortable completing.

The surveys also offer a space for suggestions. I’ve never left that blank.

Unlike other surveys, where you participate but never hear final results, I enjoy reading NARCOMS research results in their free, informative quarterly publication NARCOMS Now that is mailed to me and available online.

The patient perspective is alive and well at NARCOMS. Their database helps all of us inform important policy issues and gives us a say on what MS research should be explored next. If you’re already participating in NARCOMS, a heartfelt thank you. If you’re not, please join us! It’s easy­peasy to register, and in this case the old saying is true: here the more is definitely the merrier. Visit narcoms.org or call 800-253-7884.
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Cathy

Cathy Chester

Cathy Chester is an award-winning freelance writer and health advocate whose blog, AnEmpoweredSpirit.com, focuses on living a quality life despite disability. She is the official blogger for the Consortium of Multiple Sclerosis Centers and a regular contributor/moderator for MultipleSclerosis.net and The Huffington Post whose work has appeared on websites such as Mango Health, Erma Bombeck Writers’ Circle, Everyday Health and BlogHer. Cathy was diagnosed with multiple sclerosis in 1986 and lives with her husband and son in northern New Jersey.

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    9 Comments

  • Darrell   Sep 1, 2016 2:05 PM
    Great article! I was diagnosed with MS 34 years ago in Morristown, NJ! I have since moved back to my home state of Maine. I'm currently at the secondary progressive stage and was last actively treated for a flareup in 2003. I had to stop driving (cognitive) and had to leave my profession (engineering). I do not take any MS disease modifying drugs. Just got a scooter, so life is good!
  • Linda L Halvorson   Sep 1, 2016 2:06 PM
    Thanks for sharing your story. I was diagnosed 40 years ago Tuesday sept 7. Nothing helpful when I was diagnosed except IV treatment with ACTH. Amazing what is available now.
  • Shan   Sep 1, 2016 11:57 PM
    Nice Information Thank you for sharing..
  • GravityUSA   Sep 1, 2016 11:58 PM
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  • kwec7744  Sep 2, 2016 12:12 AM
    I just discovered the Cathy Chester blog site, and was very impressed. So much so that, I will become a regular visitor.
  • Anita Towhill   Sep 2, 2016 8:22 AM
    MS awareness is so important. I am 61 year old, identical twin, RN with MS. I am the Volunteer MS District Activist Leader in CT. We are great supporters as we know what you are going through. Live each day to the fullest
  • Chalk'nPens   Sep 2, 2016 10:28 PM
    I wasn't diagnosed until I was 57 ... before that, I was busy with studies, teaching, mothering and daughtering (elder parents with catastrophic illnesses.) There was no tiome to see doctors about dizziness, headaches, recurring shingles and occasional bouts of vertigo with nausea. When others' needs were met and I did see a doctor or two, I was diagnosed with RRMS, I was told my brain looked like that of a person in their eighties. I thought, no wonder. I'd been a graduate student, a master teacher, and was considering a doctorate in neuro-psychology.

    I began injecting nightly. For four years I continued, believing the med would keep me on my feet and in my classrooms. At the end of four years, I had fallen into a deeply anxious depression, worried about how long I could continue to hide increasing cognitive losses. I resigned my position earlier than I'd planned due to short term memory loss ... who wants their children to have a special education teacher who can't remember their names or learning profiles?

    When I retired, I discontinued the injections. I've since read that people with Benign MS who have primarily cognitive issues need not take the injections, as they (I) do not relapse physically, and so the injections serve no positive purpose to balance the negative side effects for them. I was angry that my "benign RRMS" diagnosis did not preclude trying meds that weakened my immune system. I was diagnosed with all three skin cancer types in multiple sites the year I discontinued the injections. I'm dealing with the cancers by having surgeries and sutures, over and over. I won't take more chemotherapy. Isn't hindsight wonderful?

    Most if not all MS posts I read focus on the physical symptoms and therapies for 'the real RRMS," or the progressive, or secondary progressive types of MS. I read very little about people living with 'benign RRMS' or cognitive symptoms. Perhaps it is because they 'look fine' or perhaps because no one wants to admit to cognitive challenges suddenly appearing later in life but earlier than senility...

    I'm now in my later sixties ... I'm living happily ever after with my husband of 46 years ... I'm running my own business in a small quilt shop, teaching quilting to students young and old. I miss my classroom and the salary I had worked so hard to achieve. I have no social security benefits because of GPO and WEP rules in our federal laws. I have no disability allowance because I have my hard-won pension of 30 years (not a full pension, as I did not make 32 years, despite injecting every night for more than 1500 nights.)

    I'm not bitter - I know how fortunate I am to have a loving husband, a home, and my own business. I don't know how long I will be able to continue, or when the cognitive issues will reach critical mass ... I just know that the world of MS research and development seems to pay little attention to helping those of us who 'look fine' and can stand, walk, carry, etc. I wish there were more articles about us.

    But, as I've been writing and self-publishing for the past few years, I know that the saying is, if you can't find something you'd like to read, write it.
  • Deb   Sep 4, 2016 9:22 AM
    Great article Cathy! Much appreciation to June Halper as well for all the great work she does for MS patients.
  • joseph   Oct 1, 2016 10:45 AM
    I was diagnosed 11 years ago, 2005 on tax day. I now use a cane for safer walking no longer drive, but wish I did, am a trained retirement plan consultant was granted disability by Ohio. Have to justify where every penny goes, prove I am not using illegal drugs, etc.