Most people, when they get to empty, they have a reserve tank. But with MS you go to empty, you are on empty, that's it, you are done and you literally collapse - Ann Romney
Of the more than 2.3 million people worldwide who are diagnosed with multiple sclerosis, I am only one story. I am a wife, mother, daughter, daughter-in-law, sister, friend, and woman living with an incurable and unpredictable disease. And even though I am only one person, my story can add great value by educating others about what it’s like to live with an autoimmune disease. One story can make a difference.
As the Dalai Lama said, “Just as ripples spread out when a single pebble is dropped into water, the actions of individuals can have far-reaching effects.”
My story begins in 1981...
After my senior year of college I drove to Vermont with my two best friends. Their family owned a home in a wooded area outside of Bennington. After I arrived, it began to snow heavily, yet we remained undaunted by the weather and hopped into their car to go into town. As we crossed a narrow bridge, I was later told a car crashed head-on into us. My only memory was before the crash when I heard my friend shout, “Shit.” When I opened my eyes I was in the midst of being lifted out of the car onto a stretcher. A plastic surgeon at the local hospital sewed my forehead with 16 stitches. I now have my very own scarlet letter.
After I was released, I noticed that I couldn’t feel my feet. After returning home to New Jersey, my parents admitted me to our local hospital where our family doctor administered a battery of tests. I told him my feet were numb. His response? “Your shoes are too tight.”
Fast forward to 1986. While rushing through the Port Authority bus terminal in Manhattan, clickety-clacking my way toward the gate in two-inch heels, I suddenly walked “wobbly.” When I looked down I noticed one of my shoes had fallen off. After turning around to locate it, I spotted it on the floor a few feet behind me.
My shoe had slipped off and I hadn’t felt a thing. Something was terribly wrong. A CT scan, spinal tap, and MRI later, my neurologist informed me I had multiple sclerosis. Multiple what? Being a fan of the Jerry Lewis Labor Day Telethon, at first I thought I had muscular dystrophy.
I gave up my apartment and my job, and moved back home. The difficulty of walking, the numbness in my right hand, and the overwhelming fatigue combined with the shock of this new diagnosis threw me for a loop. It hit my parents even harder. Now that I’m a parent, I can understand why.
My family surrounded me with love and support. My boyfriend ran past my mother and hugged me close while whispering, “Everything will be alright.” I married that boy.
I was diagnosed in the Dark Ages of MS when there were no approved medications, no Internet to turn to for reliable information, and not many doctors talking about complementary medicine or looking at the “whole” person. Mentioning the word yoga to my first neurologist gave him a good chuckle.
My new journey had begun and I had two choices: Listen to my doctor’s prescription for total rest, or fighting MS. I chose the latter.
I began by devouring books about MS, attending support groups, calling MS organizations for information, and scheduling sessions with a physical therapist to learn how to safely walk despite the numbness I continue to live with today.
Although I live with the “best” type of MS (“relapsing-remitting” with flare-ups followed by partial or complete recovery) I’d be lying if I said it’s been easy, because MS changed my life in many ways. It’s sometimes called an invisible illness, and for me this has been true. I’ve had to leave parties early, cancel plans or not go out at all.
The repercussions of having an invisible illness is that at times I’ve been accused of being lazy or ill-mannered.
There were times when I had flare-ups and scheduled nursing visits at our home to hook me up to intravenous steroids during the hours my son was in school. Or the time I forced my husband and son to leave me behind for a vacation in Florida with our extended family. Or the time I fell flat on my face in the middle of a restaurant and people laughed at “the yuppie drunk.”
But into each life a little rain must fall, and this is my shower.
I live with the unpredictability of a disease with no cure. So we built a home with raised countertops and grab bars in every bathroom. I nap daily because of MS fatigue, wear flat shoes and sneakers for better balance and mobility, and meditate and practice yoga to reduce stress and keep my muscles stretched.
At one point, a colleague questioned my cognitive functioning. (Some people with MS experience cognitive dysfunction, but I haven’t.) She was ignorant and I became angry. But my anger led to an “aha!” moment of clarity, and it was at this crossroad that I began to write, while also advocating for people with disabilities. And so began my next venture, fulfilling a lifelong passion of paying it forward to others.
So, no, I’m not resting. I’m living a full life within the abilities I have. Having MS is not within my power, but what is within my power is refusing to let it gain the upper hand.
Source: Cathy Chester, My MS Diagnosis: A Story About Living A Positive Life, The Blog, HuffPost, December 6, 2017.
The stem cell treatment for MS greeted as a “cure” is a breakthrough for five per cent of people with MS. What about the other 95 per cent?
Here’s yet another reason to protect young athletes from head trauma: A large-scale new study found that concussions in adolescents can increase the risk of later developing multiple sclerosis. The risk of multiple sclerosis, or M.S., an autoimmune nervous system disorder with an unknown cause, was especially high if there were more than one head injury.
Two teams of scientists have found the strongest evidence yet that intestinal bacteria play a role in multiple sclerosis, an incurable disease in which the body’s immune system attacks the myelin coating on neurons, causing tremors, fatigue, cognitive problems, and more.
Gut germs that were unusually abundant in people with MS changed white blood cells in a way that made them more likely to attack the body’s own cells, including neurons...
In 2009, a breakthrough: a charming Italian researcher, Dr. Paolo Zamboni, claimed to have cured his wife's MS by "unblocking" the veins in her neck. He theorized MS wasn't an autoimmune disorder but a vascular one. The research was counterintuitive, it gave people with the disease hope, and it had an appealing personal tale behind it, involving one man's quest to save his wife. It was catnip for health reporters, who hailed "liberation therapy" as a romance-fueled medical triumph. Sadly, however, Zamboni's discovery was more hype than breakthrough.
It is well known that there is a relationship between higher levels of sun exposure (sunlight is the most efficient source of Vitamin D) and lower risk of developing MS, as people who live farther from the equator have a higher incidence of MS. It is for this reason that Vitamin D is well regarded as anti- inflammatory, or boosting the immune system.
Most people, when they get to empty, they have a reserve tank. But with MS you go to empty, you are on empty - Ann Romney
Within a year, Dr. Wahls had ditched her motorized assists and started riding a bicycle. Eight years later, she shows no signs of her disease. Last summer, the National Multiple Sclerosis Society, which has been tracking research into diet and inflammation, committed more than $1 million to study the effect of her diet on M.S.-related fatigue.
I have one of the biggest mouths on this planet, and I decided to keep using it until everyone, everywhere, knows about MS, what can be done to fight it, and a cure is found - Montel Williams.
The MS In America 2015 online survey gathered insights from over 5,900 individuals who have been diagnosed with multiple sclerosis, to better understand what living with MS is really like. This survey not only asked about patients’ diagnosis and treatment journey, it also included the impact on quality of life, symptoms, HCP engagement, and much more. Survey respondents were primarily female and over age 40, similar to the profiles of MS sufferers across the U.S.
Currently, there is no cure for MS. However 'the Zamboni' a new theory and possible treatment challenges the established concept of MS being an autoimmune disease.
Artists Kirsty Stevens and Hannah Laycock tackle the knowledge gap that surrounds MS by creating art that is tangible and accessible.
The game changer for Molson was an experimental chemotherapy and stem cell bone marrow transplant she got in 2002 as part of a study in Canada. Molson was one of a small cohort of 24 people with MS who received the high-risk therapy. Of the 24 patients, 70 percent saw the progression of their disease halted or reversed.
A toxin produced by a common foodborne bacteria could play a role in multiple sclerosis, a new study suggests. Researchers from Weill Cornell Medical College found that the epsilon toxin, produced by certain strains of the foodborne bacteria Clostridium perfringens, targets the same myelin-producing cells that also die in multiple sclerosis, as well as other cells that play a role in inflammation in multiple sclerosis. These cells include the meningeal and retinal vascular cells.
An excellent animation about Multiple Sclerosis
Like Clarence the Angel granting George Bailey the ability to see what life would have been like if he'd never been born, I wanted to write about how different my life would have been without my diagnosis.
Of the more than 2.3 million people worldwide who are diagnosed with multiple sclerosis, I am only one story. I am a wife, mother, daughter, daughter-in-law, sister, friend, and woman living with an incurable and unpredictable disease. And even though I am only one person, my story can add great value by educating others about what it's like to live with an autoimmune disease. One story can make a difference.
We’re the MS Society – a community of people living with MS, scientists, campaigners, volunteers and fundraisers. We understand what life’s like with MS, and we support each other through the highs, lows and everything in between.
Race to Erase MS is dedicated to the treatment and ultimate cure of Multiple Sclerosis. Funding research is the core focus of the Foundation and all funds raised support our Center Without Walls program, a selected network of the nation’s top MS research centers.
Shift.ms is the social network for people with multiple sclerosis. Founded by MSers, for MSers, the charity supports many thousands of recently diagnosed people across the world as they make sense of MS. It’s independent and it’s free.
MS ActiveSource is a place that offers information to support people living with Multiple Sclerosis. Information on MS ActiveSource is updated to provide new ideas for living well and staying active. In short, it is a tool to help you take control of your MS. Here you can use any of your MS ActiveSource tools to build a personalized homepage or connect with a mentor or support
The Accelerated Cure Project for Multiple Sclerosis (ACP) is a patient-founded national non-profit organization dedicated to accelerating advances toward a cure for MS.
The online community for people in North Carolina who want to do something about MS NOW!
All About Multiple Sclerosis aims to provide accurate and comprehensive medical information about multiple sclerosis (MS) written in plain English by people living with the disease and its symptoms. It contains a detailed description of multiple sclerosis, a large archive of news stories about MS, an MS encyclopedia and a large links section containing hundreds of commented and rated links.
More than 50 million people worldwide suffer from neurologic diseases. With so many lives at stake, the time is now to take action.
The Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital (BWH) is a collaborative global pursuit to accelerate treatments, prevention, and cures for five of the world’s most complex neurologic diseases: multiple sclerosis (MS), Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease, and brain tumors.
Can Do MS delivers health and wellness education programs to help families with MS thrive.
The pre-eminent organization of Multiple Sclerosis health care providers improving the lives of those affected by multiple sclerosis.
The Foundation of the CMSC is a not-for-profit organization dedicated to supporting the mission of the Consortium of Multiple Sclerosis Centers (CMSC) and its members.
About UsMission Statement
John Studdy AwardAbout Us
"MS Australia strives for a world without multiple sclerosis through quality research and for service excellence to people with multiple sclerosis and their careers."
The Multiple Sclerosis Coalition's mission is to increase opportunities for cooperation and provide greater opportunity to leverage the effective use of resources for the benefit of the MS community.
MS Ireland provides a range of services and resources to the whole MS Community, those with MS, family members, employers and Health Professionals.
We have worked since 1967 to support, educate and advocate for people with MS and their support networks. We have educated the general public, employers and health professionals about MS and actively encouraged on-going medical research to find the cause and a cure for multiple sclerosis.
The MS Trust is a UK charity, providing information for anyone affected by multiple sclerosis, education programmes for health professionals, funding for practical research and campaigning for specialist multiple sclerosis services.
MSAA is a national nonprofit organization whose mission is to enrich the quality of life for everyone affected by multiple sclerosis(MS).
The Multiple Sclerosis Foundation provides a comprehensive approach to helping people with MS maintain their health and well-being. We offer programming and support to keep them self-sufficient and their homes safe, while our educational programs heighten public awareness and promote understanding about the disease.
The mission of the Multiple Sclerosis Society of Canada is: To be a leader in finding a cure for multiple sclerosis and enabling people affected by MS to enhance their quality of life.
Your resource for MS facts, information and motivation.
At MultipleSclerosis.net we empower patients and caregivers to take control of MS by providing a platform to learn, educate, and connect with peers and healthcare professionals.
Since 2004, the Myelin Repair Foundation has funded basic research that has led to the publication of more than 120 peer-reviewed scientific articles, the identification of more than 100 novel potential myelin repair treatment targets and the discovery of multiple new research tools—animal models and assays—that may help to accelerate research on all neurological diseases.
An unpredictable disease of the central nervous system, multiple sclerosis (MS) can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. Many investigators believe MS to be an autoimmune disease -- one in which the body, through its immune system, launches a defensive attack against its own tissues.
The National MS Society is a collective of passionate individuals who want to do something about MS now to move together toward a world free of multiple sclerosis. MS stops people from moving. We exist to make sure it doesn't.
At the Rocky Mountain MS Center, we are passionate about solving problems and evaluating all options. Workable solutions are what we value, and we look forward to helping you find answers. So whether you are searching for education, care, support or research, you can look first to the Rocky Mountain MS Center. The answers begin here.
I am not medically qualified, so this web site is purely a record of my experience with Multiple Sclerosis. Any observations I make are only my personal opinion, my personal account.