Living with Multiple Sclerosis
Multiple Sclerosis / Multiple Scarring / Multiple Symptoms / Multiple Stories
Living with Multiple Sclerosis is what I have come to know and who I have come to be. Living with MS has been a curse, yet a blessing at the same time. My MS challenges me throughout every day. The monster within me that doesn't sleep nor care to acknowledge how much or how often I exercise, how healthy I eat, the medications and vitamins I take, or the positive attitude I embrace. My MS reminds me each and every day that it has a game plan of its own, from the moment I wake up to the moment I go to bed, and then all too often throughout the night.
I Have been living with MS and its individual challenges for the last 21 years of my life. My MS has made me who I am today, always challenging me to be a better man. A humble man with a great appreciation for life, family & friends, and for every day the sun rises and I am still above ground. A thankful man for being blessed with my ability to find some strange humor in all of this. Living with MS has become my new vocation and personal calling in life as I continually strive on being a shining light and Inspiration for 'Others of All Abilities'. I would'nt change a thing! - Dix
4 - FOUR DEFINITIONS OF MS -
Multiple Sclerosis is a chronic and unpredictable disease of the central nervous system (CNS) brain, spinal cord, and optic nerves. Where the autoimmune system is mistakenly attacking the CNS causing lesions / scaring affecting the communicative pathways resulting in a number of symptoms including balance, mobility, vision problems, speech and cognitive issues, bladder and bowel issues, and a slew of other symptoms not always visibly apparent to others.
2.3 million people live with MS worldwide. More women have MS, though men tend to progress faster (just my luck). Most people are diagnosed between 20 and 50 years old. I was 41 years young when diagnosed. The cause of MS is Not known, though there are several theories including low levels of vitamin D and exposure to the Epstein Virus.
MS is classified into three categories. Relapsing Remitting (85%), where one experiences an initial attack or onset of symptoms followed by recovery. Recovery is not always at 100%. Secondary Progressive, where one experiences a slow and gradual worsening of symptoms with few if any relapses. SP usually sets in later in the disease progression. Primary Progressive, where progression is more pronounced and continues over time with no relapses. PP is often diagnosed at onset and the least understood.
There is No Cure for MS, though there are several drugs, Disease Modifying Therapies (DMT) available for Relapsing Remitting MS. The goal of a DMT is in reducing inflammation and attack on the CNS causing further progression. Early in 2017 the first drug for Primary Progressive MS was introduced to the market. The future looks very promising with science and medical research making significant advances in stem cell therapy and myelin repair.
Multiple Scarring, or Multiple Sclerosis as referred to in medical terms, is just that, Multiple Scarring and lesions along the Central Nervous System (CNS). In patients living with MS the immune system is misdirected and attacking CNS seeing it as an invader within our bodies. In the confusion the protective white blood cells are crossing through the blood barrier and attacking the CNS resulting in lesions of the brain and optic nerves, and scaring along the protective nerve pathways (myelin sheaths) of the spinal cord.
This Multiple Scarring reduces the clarity of signals sent by CNS controlling all aspects and functions of our minds and bodies. Think of the CNS as a freeway in which an accidentent has occured. The accident has now reduced traffic down from four lanes to one lane slowing traffic significantly, and sometimes to a complete stop. The Same is true of brain lesions and scarring of the CNS caused by MS.
Another way I like to draw a parallel and explain what is happening is to picture a loom of colored copper electrical wires. Millions of wires running down our spines headed off in millions of directions, relaying the command signals of our brains throughout our CNS. Each of these wires, making up in whole of our spinal cords, are covered by protective myelin sheaths insuring clear and undisrupted communication of our brains throughout our bodies and CNS.
In MS patients, our misdirected immune systems (white blood cells) are attacking the protective myelin sheaths (colored wires) causing inflammation and damage to the vital communication pathways (copper wires) leaving scars which intern are significantly impairing the communications and commands of our brains throughout our bodies and Central Nervous Symptoms.
Multiple Symptoms No surprise here, dealing with Multiple Scarring across the CNS, MS is often recognized as having the most symptoms of any medical disease. Poor balance and vision problems are common symptoms patients experience when MS first presents itself. Such was the case for me as well. It is easy to understand, wherever there is scarring along the CNS, one is likely to have issues associated with those subject areas of our bodies.
For many people, after being diagnosed with MS answers a lot of questions on past
peculiarities and issues we had been experiencing in years prior. I will never forget the day I was walking down a sidewalk in Santa Barbara and virtually walked straight into a garbage can leaving me stunned and confused as to what just happened. I was also confused as to why the more days I swam the more tired and fatigued I because.
MS and the path it takes is different for everyone. Some of the more common symptoms one might experience are poor balance, vision issues, cognitive and memory issues, muscle spasms, shooting pains, numbness in the limbs and abdomen, overall weakness, extreme fatigue, speech and swallowing difficulties, bladder and bowel issues. As for me, I seem to find myself challenged by many if not all of these issues at one time or another throughout each week. (Loads of fun)
Multiple Stories, as unique as each individual living with Multiple Sclerosis. Wether we like it or not Life changes the day we learn we have MS, or for that matter any other chronic disease. No matter how tame or fire breathing the MS monster living within us, we must all face and deal with all it has in store for us now and in the years ahead.
I found myself alone in the bathroom of my high-rise office building sitting on the toilet wiping tears from my eyes the day my doctor called and told me I had MS. I had only heard of one neighbor having this unknown disease to me. How would my life change? What was happening to me? What does this mean? Is this what Michael J Fox has? How would my life change? So many questions and uncertainties racing through my head.
(Michael J Fox has Parkinsons Disease)
I dried the tears from my eyes, gained my composure and left the bathroom knowing that I could handle this. Hell, I had been living with Type-1 Diabetes for the last 37 years at that time. Diagnosed when I was just 14 years old, and have had no issues to date to speak of. That day was the first and last time I every felt sorry for myself.
Much has changed in my life since that day I sat there alone in the bathroom some twenty years ago. There are countless activities I am no longer physically able to partake in, and challenges I experience on a daily basis I would not wish upon anyone. Yet, as I so often find myself telling others, "I would not change a thing". Ok, Yes I would like to surf and snow ski again. I'm enjoying the waves again on a custom belly-board and I'm looking forward to adaptive skiing this winter in Mammoth. Who would have know that I now I would be building a foundation "Raising MS Awareness" through my Open Water Swimming?
We are all unique unto ourselves, different sexes and different ages with different families and friends, different jobs and social circles, different values and beliefs, different wants and needs, all sharing one thing in common, and not by our own choice - Living with Multiple Sclerosis.