Multiple Sclerosis Awareness Month: My Rock Stars Are The Ones Making a Difference In Our Lives
March is Multiple Sclerosis Awareness Month. I thought this would be the perfect time to thank a segment of people who work hard every day to find ways to make our lives a little better. And hopefully, one day soon, they will find a cure. They keep hope in our hearts.
I remember it like it was yesterday. The day a sentence, one phenomenal sentence, indelibly entered my heart. It was short, to the point and brought tears to my eyes. I was sitting in a room filled with women, all dressed to the nines, who were patiently waiting for the fashion show to begin.
Someone grabbed the microphone to welcome us. I recognized the voice and when I looked up I saw the woman responsible for creating the MS Center we were honoring, the MS Center who embraced my family and me after my diagnosis. She was my nurse practitioner, the one who became my friend and mentor, the one who changed my life.
She introduced herself, spoke eloquently about MS and explained the mission of the fashion show fundraiser. Then she added:
“I will not rest until we find a cure for MS, even if that takes the rest of my life.”
The words seemed to hang in the balance while my heart processed its remarkable meaning. There was someone out there working incessantly to make my life better.
What sort of person works tirelessly to find a cure for a disease that’s not their own? Who selflessly dedicates their life to such an endeavor?
"People always ask me how I got involved in MS. I had an excellent nurse mentor and met people living with this disease who amazed me in their hopeful pursuit of an incredible life despite a chronic neurological illness. As I became involved in the MS specialty community I met health care providers and others who were altruistic, devoted and fiercely fighting for the needs of those with MS. This is what keeps me in, being surrounded and supported by the MS community, in and out of my practice. I have high hopes and expectations of the work we do to create connections, empower one another, and find a cure." ~Megan R. Weigel, DNP, ARNP-c, MSCN
For me the answer began with June Halper, a tireless advocate who touched my heart so long ago. She’s a nurse practitioner, author, CEO of the Consortium of MS Centers, businesswoman and creator who possesses the energy of the Energizer bunny on steroids. She is an amazing human being.
"As a Casemanager for a Visiting Nurse Service, I had a number of progressive MS patients on my caseload before the advent of DMTs. Then I was diagnosed with MS. All I really had to refer to were patients who were wheelchair or bed bound or friends who had died young with complications of MS.
Fortunately, my diagnosis came in the mid 1990s when we had a small arsenal of therapies. I never had to “go there” because we are working so hard to provide medication and symptom management and programs of lifestyle change to keep people active and healthy with Multiple Sclerosis. It is still not an “easy” diagnosis to have and one needs to consciously make decisions to manage healthy living but in the last thirty years, we are getting a handle on this and people no longer need to worry that wheelchairs or bed is ultimately where they will end up. I have been so blessed over the last decade and a half to find kindred souls in the MS nurses that I have come to know and work with." ~Cherie C. Binns RN BS MSCN
I credit June for being the one who, in 1986, taught me how to take the DIS out of ABILITY. Since then I’ve met countless other MS advocates, in and around the medical community, who are also doing incredible work.
I could write a book about them.
"As a MS nurse my hopes are that we can cure this dreadful disease and in the meanwhile provide the very best care, support, and hope for our patients and their families. MS impacts our patient's whole universe and together as nurses we can make a difference in how they respond to this challenge. Research is continuing to offer real hope for the future both in stabilizing disease but eventually lessening it." ~Eileen Scheid, RN, MSN, MSCN
June invited me to be a part of The Consortium of Multiple Sclerosis Centers (CMSC), the preeminent professional organization for Multiple Sclerosis healthcare providers and researchers in North America. As their blogger I'm honored to meet members of CMSC who work every day to improve our lives.
"There have been many breakthroughs in the care and treatment of people with MS in the past 30+ years since I started in this speciality field and I hope our patients have improved quality of life. I'm hoping the next breakthrough is a cure!" ~Marie Namey, RN, MSN, MSCN
March is Multiple Sclerosis Awareness Month and to honor it I wanted to introduce you to some of the dedicated members of CMSC.
"MS is a challenging disease that is filled with many uncertainties. I feel lucky to work with people and their families who face this disease with an incredible amount of braveness, resiliency and hope. "~ Rachael Stacom, BSN, ANP, MSCN
Their common mission, as you can see from their quotes, is to create a better quality of life and instill hope in us, and to find a cure.
"MS Rehabilitation professionals are very sensitive to what the diagnosis of MS may mean to a women, man or child. But we are confident that the rehabilitation program, provided by an CMSC Specialist, can address the symptoms and functional limitations experienced by the individual, and promote recovery from the exacerbation. Research has demonstrated that rehabilitation improves strength, function and can decrease symptoms of fatigue. In addition, research has demonstrate that 20 minutes of moderate exercise in people with MS can stimulate enhanced production of Brain Derived Neurotrophic Growth Factor [BDNF] which enhances cortical reserve. The CMSC advocates for comprehensive health care including rehabilitation for individuals diagnosed with MS." ~Susan E. Bennett, PT, DPT, EdD, NCS, MSCS
I thank them for making a difference in our lives. They are brilliant and passionate in the work they do.
They are my rock stars; they are my heroes. The MS community are also my heroes. I feel blessed to be surrounded by such exceptional people.
Does your employer provide workplace accommodations due to your MS?