I Did It!

article and illustration by LOU DAVENPORT

March of each year brings about the month of Multiple Sclerosis Awareness. As most of you know, my daughter, Paige, was diagnosed in 2010, and I have several friends that also share this diagnosis. You all probably know someone with it, too. So, this month’s column is my way of raising awareness, and spreading a little information about this strange, incurable disease, not only for my daughter, but also for the estimated 2.5 million others around the world that also suffer from Multiple Sclerosis.

So, what exactly is MS? It is a chronic neurological disease that affects the central nervous system, which includes the brain, spinal cord, and optic nerves. There’s no known definitive cause, and there is also no cure. MS is an autoimmune disease, meaning that your own immune system attacks itself, particularly the protective substance called myelin that surrounds nerve cells. The damage caused by this forms scars (sclerosis), and makes the brain’s ability to control the body difficult.

MS is also the most common neurological disease in young adults, with most being diagnosed between the ages of 20 to 40. Why or who gets it is a mystery, but it tends to target women more often than men, and the progression and severity tends to be worse for men. No definitive cause has ever been found. The majority of cases are found to be in colder climates, with the highest incident rate in Scotland.

While there are a wide variety and number of symptoms associated with MS, it affects each person differently. My daughter’s started with numbness in her legs and torso, followed by difficulty walking. My friend, Ronda, started with having vision problems, to the extent that her optometrist told her she was going blind. Thankfully, she did eventually regain her vision. The most common symptom is fatigue, but not the kind of fatigue that you can fix with a nap, either. This is serious, sometimes debilitating fatigue. Other symptoms can be numbness, tingling, pain, mood disorders, muscle spasms, weakness, and spasticity. It can also affect the memory, causing confusion, called brain fog. Heat and cold sensitivities can cause varying symptoms, as well.

Unfortunately, because MS shares a multitude of symptoms with other diseases, diagnosis is often a long, stressful, and drawn out process. It feels weird to call this a “perk,” but my daughter had several lesions on her spine and neck, but an extremely large lesion (softball sized, y’all!) on her brain. She actually named it Big Bad Voodoo Daddy! That large lesion made her diagnosis much easier than it does for most. That large lesion is a keynote characteristic in what is called Tumefactive MS, a rare and aggressive form of the disease. In most cases, blood tests, neurological exams, MRIs, PET scans, and even spinal taps are used by doctors to make a comprehensive evaluation and diagnosis. For most, this process can take years.

There are four different types of Multiple Sclerosis, with each type designated to the progression of disease. Relapsing-remitting (RRMS) affects about 85 percent of those diagnosed. This is when symptoms cycle through relapses and remissions. Primary-progressive (PPMS) is a slow progression of worsening symptoms without any relapses or remissions. Secondary-progressive (SPMS) patients symptoms worsen over time, regardless of relapses or remissions. Most that are initially diagnosed with Relapsing-remitting will eventually develop Secondary-progressive. Progressive-relapsing (PRMS) is the least common type, affecting about five percent of those diagnosed, but is characterized by a continuos decline from the very start.

Once diagnosed, various forms of treatment are available. There is no cure, but most patients begin taking disease modifying medication. These drugs aim to slow the damage and progression of the disease, minimize symptoms, and help with both physical and mental functions. These treatments will be taken for the duration of each patient’s life. Research has come a long way, and while most of these medications used to only be offered through injections, they have now developed them in both pill form, and infusions. Most with MS have to go through a kind of trial and error period of seeing which drugs work best for them. Some patients decide not to take any of these medications. What works for one doesn’t always mean it will work for someone else. Even while taking these medications, the disease will still progress, but at a slower rate.

As I stated before, we all probably know someone with MS. Some people have symptoms that can be seen, while others don’t. It is sometimes referred to as an “invisible illness,” because of that. There are many celebrities that have been diagnosed as well, such as Selma Blair, Montel Williams, Christina Applegate, Clay Walker, Teri Garr, Richard Pryor, Tamia Hill, Jack Osbourne, and Jamie-Lynn Sigler, to name a few.

If you would like to get involved in helping those affected and spreading awareness, there are multiple foundations, charities, and volunteer opportunities you could get involved with. The National MS Society, and the Multiple Sclerosis Foundation are two great places to start. Walk MS is a nationwide campaign that allows people to get involved and show support, fundraise, and raise awareness. One of my personal favorites is Band Against MS (BAMS), a foundation created by Clay Walker, after his own diagnosis.

Please, get involved, if you can. If you know someone with MS, ask them about ways you could help, and be supportive. Use humor, and help them find some positivity, because laughter really can do wonders! Be their cheerleader, help them with activities that are difficult for them to do by themselves. Let them know you see and acknowledge what they are going through, and how inspiring they are to others, and that you support whatever brings them joy. My friend, Ronda, loves to travel, and has always looked forward to walking across the New River Gorge Bridge. The bridge is 851 feet above the ground, an amazing (and scary) feat for anyone, and its motto is “The Walk of Your Life,” and she did it! She did not let her diagnosis, or limitations get in the way of pursuing the things she wants to do, even though she humorously says, “It may be the walk of your life, even if all you can do is make it the crawl of your life!” How amazing is that? It is also important to remember that no one signs up for this, and they need all the help we can give them. Let’s help find them a cure!