Medcial Section: Fasten Your Seatbelt…Detour Ahead
Author: Kitty Bartell
Driving an 18-wheel tractor trailer truck requires a great deal of training and a whole lot of practice to be able to navigate all the surprises that big rig may throw at you. Recently, I was ordered into the driver’s seat, told to buckle my seatbelt and head on down the road.
Not literally, however, some days this is how I feel since being diagnosed with multiple sclerosis: the big, scary new rig I had been given to drive was MS. So far, there have been days when the road was smooth, but there have been plenty of potholes and detour signs too. When reading about people who have had MS for years, or even decades, I realize my 11-month perspective on all of this will evolve as surprises will inevitably be thrown my way.
The definition of MS is relatively straight-forward; diagnosing and treating MS is a whole other bailiwick, as my grandfather would say. Multiple sclerosis is a chronic autoimmune disease of the central nervous system where the myelin sheath, or insulating covers surrounding nerves cells in the brain and spinal cord, is damaged, interfering with nerve pathways and causing myriad symptoms, including muscle weakness, loss of coordination, and speech and vision problems. For approximately 350,000 Americans who have MS, there are equally as many stories of how their disease appeared and was eventually diagnosed. I know now that my 36-day ordeal from my first debilitating attack to diagnosis was relatively short. At the time, it seemed like the longest 36 days of my life.
October 31, 2012, I was walking to my car, and without warning my vision went double. Oddly, I literally thought, “It’s Halloween … weird things happen.” Something must have blown into my eyes… I would be able to blink it away as soon as I got into my car. It didn’t go away. In reality, dizziness settled in and the only time that I could see clearly and not feel like the world was turning on its side, was if I held my head perfectly level and looked straight ahead. Five days later, I visited my eye doctor.
The verdict was that my eyes were in great shape. What followed was 30 days, five doctors, two grueling MRIs, a trip to the Medical University of South Carolina, and finally a lumbar puncture… a.k.a. spinal tap. On December 5, my neurologist said the puncture had confirmed multiple sclerosis, and he wanted me in the hospital that afternoon to begin treatment. Honestly, it was a relief … I finally had a diagnosis. Not the diagnosis I wanted, the one that could be easily treated with a Mediterranean vacation, but a diagnosis none-the-less meant that I might get my world turned right-side up again.
Diagnosing MS is difficult at best due the wide variety of symptoms that mimic other diseases. It can take months, sometime years, to put all the pieces together. My doctor told me that the MRI of my brain showed “bright spots.” These bright spots are where the myelin sheath has been worn away from the nerve cells. Myelin is essentially a fatty coating layered much like an onion around the branches of nerve cells. Like telephone wires, the nerve cells talk to each other, and without their myelin protection, their conversations get interrupted.
There are varying degrees of MS, and a specific diagnosis is based primarily on the speed with which the disease progresses. On one end of this spectrum is benign MS, meaning individuals suffer one or two attacks and rarely have any further incidents. Primary progressive MS is all the way on the other end of the spectrum, marked by a relentless downhill progression. My MS is relapsing-remitting, the most widely diagnosed form, and characterized by symptom attacks, followed by some recovery, then a remission period. Remission implies the disease is not active; however, with MS, nerve cells are always under attack. With this form of MS, it seems to be a pretty solid guarantee that another attack is coming, you just never know when.
Statistics are the inevitable side of MS. However, what I have learned is that worst-case scenarios are not inevitable and that I have some control over how my illness progresses, despite the fact that it is always fighting against me.
The first step was clearing up my double vision and dizziness. That took a relatively common course for MS patients of high doses of steroids administered in the hospital. The treatment lasted three days (with several weeks of not-so-fun steroidal side effects) and resulted in significant improvement. Next came long-term treatment options; after much research and discussion with my neurologist, I am taking a daily injection of a medication that is intended to minimize future attacks. It doesn’t help with my daily symptoms, but I do have other weapons in my arsenal for them.
One of the most common symptoms of MS is fatigue—not the kind of tired you feel after a long day at work or running a 5K. It’s more like getting a solid 10 hours of sleep and waking up too exhausted to make a pot of coffee. Other daily symptoms that come and go include numbness, tingling and weakness, quick, sharp pains, feeling disoriented or dizzy, and voice weakness.
There hasn’t been a day when I have not been aware of my MS; however, I have found that implementing some serious, non-negotiable lifestyle changes, can minimize their effect on my life. The first change I tackled was my diet. All the research about MS and diet include one common theme: avoid unhealthy fats. When fats are processed for human consumption they are heated to create a product with a long shelf life. The problem is that cell membranes—and of particular importance to MS patients, nerve cells—are made up of essential fatty acids. Consumption of these more sticky, processed fats make for rigid cells, slowing down an already compromised nervous system.
The fat that does work for a MS diet is extra virgin olive oil. Made from the first cold pressing of the olives, it is the only fat not subjected to heat processing. Beyond the fat facts and based on a lot of research, I am following a Mediterranean-type diet focused on fruits, vegetables, legumes, seafood, a little chicken, red meat or pork only one or two times a month, and little or no refined sugar. I have first-hand evidence of the importance of staying on track. Having fallen off the food wagon around my birthday, I began having a raging set of symptoms much like when my first attack appeared. I thought I was headed back to the hospital for a round of steroids. Fear is a great motivator; I went back to my strict diet guidelines, and within two days the symptoms were passing. I may not always be able to fight off an attack, but this time… lesson learned.
Three other lifestyle changes that impact MS in a positive way are getting plenty of time in the sun, exercise, and meditation. Vitamin D, which we get primarily from sun exposure, has profound effects on the immune system. It has been widely accepted that insufficient sunlight may be the trigger for MS in genetically susceptible people. My doctor recommends that this former gray-winter Michigan girl spend 20 minutes a day getting unprotected sun exposure along with taking a vitamin D supplement. Exercise is also key to my daily fight. Move-it-or-lose-it couldn’t be more apt when it comes to MS, and I try to ignore the fatigue factor and walk at least 30 minutes a day. Finally, meditation is helpful in combating stress, another symptom trigger that, for me, manifests almost immediately. Meditation is my greatest challenge. With one of those minds that never ceases to run, I will continue practicing this practice and plan to get more skilled over time.
The support and love of my family and friends are the final weapons in my arsenal against MS. My husband was diagnosed with juvenile diabetes at age three, which in a strange twist of fortunes has made him a tremendous support in my new MS adventure. We now both take injections every day; he understands and supports the changes I have made to my diet and lifestyle and how they impact my day-to-day well-being; and he is the most empathic shoulder when it hasn’t been a good day and I just need to moan a little. My parents, sister, brother, and my college-age daughter, along with a handful of treasured friends, are in-touch and always ready to listen, and would travel to me in an instant if I asked. All of this goes a long way toward maintaining a positive mindset.
In these short 11 months, what I have learned is that as I get settled in the driver’s seat of my big rig and travel down this new highway, at least I am still in the driver’s seat. It may be a little harder to handle than my Chevy Malibu, and the road may get rough, but most days I think the weather is going to be just fine.