Multiple Sclerosis (MS):  An Unpredictable Disease

Posted on: 2013 02 25

This week I am devoting the blog to Multiple Sclerosis (MS), a chronic disease that attacks the central nervous system.  This is an unpredictable disease and progress, symptoms, and severity vary for those affected.  MS occurs when the immune system attacks the central nervous system.  The National Multiple Sclerosis society says that it is thought that MS is triggered in a genetically susceptible individual by a combination of environmental factors.  Some scientists believe it is an autoimmune disease while others disagree because the specific target of the attack in MS has not yet been identified.   Again from the website, www.nationalmssociety.org, “As part of the immune attack on the central nervous system, myelin (the fatty substance that surrounds and protects the nerve fibers in the central nervous system) is damaged, as well as the nerve fibers themselves.  The damaged myelin forms scar tissue (sclerosis), which gives the disease its name.  When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur.”   There is a lot of information on the web about MS, its symptoms, treatments, and support.  The most in-depth of these is the National Multiple Sclerosis Society at www.nationalmssociety.org. Instead of regurgitating facts and figures about this disease, I wanted to make it really personal.  So with that, please read below a very powerful story of a young, single mom living with this disease.  Many thanks to the Vermont MS chapter and Steve Sookikian for connecting me to Laura Palasciano.   Once Upon a Time: My MS Story By Laura Palasciano   My first symptom of multiple sclerosis was losing nearly 50 percent of the vision in my left eye while driving down the interstate with my then three-year-old daughter in the backseat.  One minute I could see, and the next, I couldn’t.  Without any previous signs or symptoms, nine lesions had been slowly accumulating in my brain.  I was officially diagnosed with MS on January 15, 2010: 14 months and 27 days after my initial symptom of Optic Neuritis (but who’s counting?).  I was 30 years old.  Long gone are the days when the only time I went to the doctor was for my annual physical (maybe every two or three years).  I have had 162 doctor’s appointments and nine MRIs of my brain over the last three years.  I take a cocktail of eight different prescription medications multiple times a day, and will most likely need to inject myself with a disease modifying therapy for the rest of my life.   Understandably, I am a much different person now than I was three years ago.  I’m not talking about the “new boyfriend” or “new tattoo” kind of different…I’m talking about a life change that altered the very being of who I am as a person.  What I notice most is that I am now constantly afraid; this fear is constant and crushing at times.  I worry about my finances, due to the large amount of money I spend on the prescription medications just to keep my body moving.  I worry whether I will be physically and/or cognitively able to work through the next month or year, let alone until my retirement.  I am scared every day that my own immune system is laying siege on my brain.  I worry that someday I might exhaust all available options for disease modifying therapies and will be forced to let my MS progress, unchecked.   I no longer have the luxury of rushing out of the house without any thought as to how long I will be gone or what I might be doing.  Now I have to think about how long I might be gone, because that determines how much medication I will need to get me through the day.  Because the hot weather causes exacerbation of the symptoms of MS, during the summer I have to remember to bring a cooler with ice packs so I can strap them onto my body to keep me cool.  If it’s extremely hot, I will probably stay home.  On a day I am not feeling well, I may have to change where I want to go depending on how much walking the outing will entail.  Will there be adequate places to sit down, or do I need to bring my portable stool with me?  Will there be traffic?  If so, will the stop-and-go driving increase my leg pain enough that I won’t be able to get through the day?  If I’ve had a busy day at work, will I be able to meet my friends for dinner after work, or will I be too tired?  If I clean the bathroom and the living room, will I have the energy to clean the kitchen, too?  These are just some of the struggles of my daily life with MS.   Regardless of my diagnosis and all it entails, I have led—and continue to lead—a happy and fulfilling life.  I have been lucky in life in more ways than I can count.  I have a six-year-old daughter, Ava, who fills my life with unlimited laughter and happiness and keeps me on my toes (to say the very least!).  Ava is my number one reason to keep fighting against this disease; she makes me feel like I could win.  I have loads of family and close friends who love me, care about my well-being and would do almost anything to help me.  I have a great job and wonderful co-workers who are like a second family to me.  My parents and two sisters are my heart and are always there, whether it’s going to an appointment with me, babysitting Ava or even something as simple as helping carry groceries in from the car.  They cry with me when I have setbacks and celebrate with me when I receive good news.  I consider myself truly fortunate to have such a loving support system in my life that is constant and unwavering.   For all of the worry and fear MS has caused me, it has also changed me for the better.  MS has forced me reevaluate my life and I, subsequently, have discovered that the only thing I need to achieve true happiness are the people I have in my life who are there to support me.  I now have a clear focus on what my priorities really are since, because I only have a limited amount of energy, I need to make careful choices about what I do with my time.  If I have to choose between doing the dishes and playing a game with Ava, the dishes can wait!  MS has made me a more appreciative and loving daughter, mother, sister, aunt and friend.  I no longer take the “little things” for granted.  I can confidently say that I am a better person now than I was three years ago.  This disease has unexpectedly made me an advocate, a resource, a leader and, most importantly, a fighter.  MS has been, and will continue to be, a worthy opponent.