Community prepares to saddle up for education, research
By AMANDA KIMBLE
Dizziness. Vision problems. Headaches. Fatigue.
At first glance, they are symptoms with which anyone can relate. Sufferers of Multiple Sclerosis (MS) in many cases look like and appear to feel like everyone else. Who hasn’t had a headache? Doesn’t everyone feel exhausted every now and then?
But it’s no ordinary disease. Today, its worst effects might be numbness and tingling in the limbs. Tomorrow, the symptoms could be far more impairing – muscle spasms, tremors, problems walking. Even paralysis.
One thing unites all MS victims – the unpredictable nature of the disease. With that uncertainty comes a sense of unease. A flare-up, attack or relapse could come at anytime, unexpectedly. The worry itself is debilitating. Sufferers are left feeling drained and utterly hopeless.
Emotional changes. Depression. Isolation.
The oftentimes debilitating – physically, mentally, emotionally – disease of the central nervous system disrupts the flow of information within the brain, and between the brain and body, according to the National Multiple Sclerosis Society, nationalmssociety.org.
What is the result of this short-circuiting of the brain? The immune system essentially attacks the sufferer’s central nervous system, causing various and unpredictable symptoms.
That’s the short of it. It’s a disease that’s hard to explain, generally hard to diagnose and always hard for the patient and those who love them – I know this first hand.
And this is where it gets personal. I have seen what MS, in all of its vagueness, can do to a person. MS has a name and a face. Her name is Stephanie Jenkins. She’s my big sister, my best friend. Stephanie is a member of Stephenville High School’s Class of 1986. She has been living with MS since 2004.
As the years pass, it becomes increasingly hard to remember Stephanie before this beast entered her life – our lives. But I remember some things…
Prior to the onset, she was a hard worker, a take charge kind of person, both professionally and personally. Stephanie has been on disability for years and now relies on the assistance of a home health aide.
She was an active and involved mother, and still is when MS allows. Long walks and summertime in the great outdoors aren’t something her body can any longer handle.
Stephanie had creative talents that most people envied. She loved to paint, arrange flowers and had the ability to turn a pile of random supplies into a work of art. Spasms and the inability to focus have taken a toll on her hobbies.
Mexican, American, Soul Food, Italian, Chinese and cakes, pies and cookies like you never tasted – my big sister has always known her way around a kitchen. She still cooks, but it isn’t the same. Her overwhelming sensitivity to heat, a common symptom, and inability to stand for long periods of time, also common, mean she has adapted her recipes. She was forced to find ways to spend less time on equally delicious yet less complicated meals.
If I was sharing this story through a prepared speech, this is where my audience would struggle to understand what I was saying. Fighting through tears, I write these words, retracing the steps to the beginning of an illness that my sister will carry with her forever.
She was 34 years old when she was diagnosed. Younger than I am now. Already a mother of two beautiful girls. One who was not yet a year old and another who was about 8.
It all began with symptoms most of us can relate to – muffled hearing, double vision. Sure, those symptoms cause concern, but they can be associated with localized issues – an ear infection, cataracts.
The day those symptoms began should be remembered as a happy one. Stephanie, who lives about three hours away, was on her way back home for the weekend. She was en route to Stephenville, for a baby shower at mom and dad’s house. I was pregnant with my first born.
In a matter of days, the hearing and vision problems, now remembered as the ominous signs of the onset of MS, were replaced with more concerning symptoms. She had a MRI days after the baby shower and learned her brain was covered with lesions.
That quickly, our family was personally introduced to MS.
We had no idea what that really meant. I couldn’t understand or relate to the disease. Due to the wide variety of symptoms, it seemed to be a catchall diagnosis. What was really going on?
I will never forget Stephanie saying she felt like – and it sounded like – a helicopter was inside of her skull. Then her left eye turned in, pointed to her nose. She could be walking a straight line on flat ground and suddenly fall flat on her back.
These strange symptoms persisted. As did her frustration. And ours.
Perhaps the most disheartening part of MS is that a patient feels so alone. Oftentimes thinking the people who are supposed to love them the most look at them in disbelief.
I will admit there is plenty of disbelief. How could this be happening? What do you mean there is no cure? Can it get worse? Is it hereditary?
You better believe it can get worse. For Stephanie, it did about five years after being diagnosed.
A major MS flare-up triggered an attack on her brain – Mononeuritis Mutliplex. That’s a fancy term for a nervous system disorder with damage to at least two separate nerve areas.
Simply put, my sister was not even 40 years old and she was experiencing a downward spiral. Her quality of life went from cloud nine to zero.
Stephanie had no hand function. She had paralysis in her legs. Her body failed to function from the the center of her body downward, impacting her movement as well as her internal organs. For five consecutive weeks, she was prisoner in her own body.
She was placed in a rehabilitation facility, which, in her case, was a fancy term for utter hell.
Visits from our father, stepmother, biological mother, her children and husband were all that she had left to remind Stephanie of the good old days – before MS. My dad was her rock.
I was something else. I will be the first to admit I was a horrible sister. I was furious. I was heartbroken. It only took one visit to a horrible smelly nursing home – the rehab facility – populated by invalids and people approaching their finial days for me to want no part of her new life. This was not my sister. It wasn’t fair.
Luckily, Stephanie was – and is – a stronger person. It took more than a year for her to find her new normal. Physical therapy, neurologists, an ever-growing list of treatments and medications.
Her brain found new pathways – ways to overwrite the damaged circuits. She had to rebuild every muscle in her body.
She accepted that having a wheelchair and walker on standby was must. A wheelchair ramp and accessible bathroom were made at home. Her oldest daughter stepped up to the plate, quickly learning to help with laundry, her baby sister and much more.
As for today, there are good days and there are bad days for my sister. Most people wouldn’t know it by looking at her beaming smile and perfectly applied makeup, but my sister is suffering.
MS is thought to affect more than 2.3 million people worldwide. That’s a lot of suffering.
It changes lives, even taking many.
We almost lost Stephanie in late 2014 due to an issue related to that long list of medications. I am happy to say she came back to us – literally slammed the door on death.
But I realize – though she doesn’t understand that I do – that she also reopened the door to uncertainty and suffering.
Stephanie hasn’t experienced a major flare-up since 2009, but she undergoes regular intravenous therapies and other treatments to keep the beast at bay. Every day is a struggle with the lesser symptoms associated with her disease.
I can’t change that fact, but I have changed how I look at MS. It’s important to share her story – sufferers shouldn’t be cloaked in a veil of disbelief or trapped in a cave of isolation.
The cause of MS is still unknown. According to the National MS Society, scientists believe the disease is triggered by an unidentified environmental factor in a person who is genetically predisposed to respond.
The progress, severity and specific symptoms of MS in any one person cannot yet be predicted. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease.
Raising funds and awareness locally
You may not know this, but there are many MS sufferers living in Stephenville. For those individuals, the Cowboy Capital MS Trail Ride, online at ccmstrailride.com, was organized two decades ago.
The event raises funds and holds the distinction of being the first trail ride in the United States to be sanctioned by the National MS Society as an official fundraiser.
The 20th annual trail ride is set for Saturday, May 7, at Tarleton State University’s Hunewell Ranch. Registration is available online at ccmstrailride.com. On site registration begins at 8 a.m. May 7, followed by the start of the ride at 9 and the 5K Trail Run/Walk starts at 9:30.
Funds raised through the ride, run/walk and silent auction – held during the luncheon at the ranch – support research, education, advocacy and local programs that enhance the quality of life for people with MS and their families.
Studies show early and ongoing treatment with an FDA-approved therapy can reduce future disease activity and improve quality of life for many people with MS.
Talk to your health care professional and contact the National MS Society at 1-800-FIGHT MS to learn about ways to help manage MS and about current research that may one day reveal the cure.
For more information about the disease, contact the National MS Society at (713) 526-8967, or visit the Lone Star Chapter web site at hms.org.
To help a newly diagnosed patient cope with the disease, reach out to other sufferers you personally know or through Facebook groups and other social networks – support, understanding and acceptance makes all the difference.