I remember it vividly.
On February 27, 2011, my wife Pam and I went to Belleayre Mountain in the Catskills to do some skiing. It was one of those crisp, bright winter mornings.
Although it was the perfect day to be out on the slopes, somehow it didn’t feel that way. When we walked into the small building of the adaptive snow sports program, we were welcomed by helper dogs. A couple of guys in technical mountain wear were climbing out of their wheelchairs and were being strapped onto a mono- or bi-ski.
A year or so ago, some of these young men had been riding their motorcycles. They had experienced the ultimate sense of freedom, until an accident left them paralyzed from the waist down. After that, they stopped living life in the fast lane. On this cold morning, it would take them an hour, just to be fitted to the equipment before someone could carry them onto a ski lift.
I looked at my wife. She had a sense of what was coming.
As a child she never skied. There was plenty of snow in Upstate New York, but no money to join the ski club. Only in her forties she learned how to ski, and she turned out to be a natural. On our second date she took me to Blue Mountain. “If anything serious were to happen between you and me,” she said with a smile, “you better learn how to navigate the Pennsylvania slopes!” And so I did.
Just as I was beginning to feel more secure on my skis, strange things began to happen to Pam. She’d always been physically fit and well balanced. Now she became increasingly vertiginous and unstable.
In a matter of months she lost a lot of strength and her energy level went way down. Sometimes we would go to the slopes hoping she’d have a good day, only to return after one short run. Sometimes we would turn around before we even reached the skiing area. Something was seriously wrong, and we eventually found out what it was:
It’s one of those autoimmune diseases where the brain tries to tell the body what to do, but some lines of communication are broken. Messages reach the wrong parts or never even arrive because the body is attacking itself. Some doctors believe MS isn’t one disease, but a collection of symptoms that varies from patient to patient and from day to day.
Nobody knows exactly how MS begins, and nobody knows how to end it.
Imagine that, when your doctor tells you: “You have MS.”
FACING THE FACTS
When my wife’s first symptoms began, she was eight years old and few had heard of Multiple Sclerosis, and certainly not pediatric MS. Even today it is notoriously difficult to diagnose. An estimated 2.1 million people are affected by it worldwide. Experts think there are currently 400,000 people in the United States with MS. (This is thought to be a very low estimate, as it is based on those who have been in touch with National MS Society) Approximately 200 new cases are diagnosed every week. That’s one new case for every hour of the day.
Those aren’t just numbers. Behind the statistics are lives that are fundamentally changed, jobs that are lost due to disability, relationships that are tested, families that cannot cope, the end of independence, the beginnings of depression, countless visits to medical offices, endless insurance paperwork, and waking up dead tired before the day has even begun.
Oh, and did I mention the ridicule of neighbors who think you’re drunk because on some days you can’t set one foot in front of the other, or who believe you are faking it to rake in the “big disability bucks”?
When life as you know it falls apart and you’re struggling to wrap your brain around what’s happening… at that time your body decides to treat you to a dose of cognitive dysfunction, one of the many nasty symptoms of MS.
My wife wasn’t raised to feel sorry for herself. She’s a fighter. She needed to know what was going on and wanted to be actively involved in her treatment plan. Unfortunately, her body didn’t respond too well to the standard injectable disease-modifying medications. In fact, she felt worse and had to start using a cane. Then came the wheelchair followed by a scooter. Who knows what would be next.
As they tightly strapped her into the bucket seat of the bi-ski, the crew at Belleayre taught me how to best assist her as her able-bodied ski buddy. I would basically hold her on a leash while skiing behind her, as I set the course and speed. I don’t think my wife looked at it that way, though. She probably thought she was holding the reins. Come to think of it: isn’t that the case in most intimate relationships?
You’ve probably seen the saying: “Behind every great man there is a great woman.” On my wife’s desk there’s a small sign that says:
“Behind every successful woman is…. HERSELF.”
Asking for help is often the hardest for those who are so used to helping others. Having to depend on other people is a humbling experience. Some even feel it is humiliating.
On these white, snow-sculpted slopes, my wife was forced to be dragged down by a Dutchman who wasn’t exactly an expert skier. Only a few years ago, this same guy had had a forceful encounter with a pine tree because he didn’t know how to stop coming down the hill at full speed.
With the help of a Belleayre crew of knowledgeable, caring instructors and after some serious husband-and-wife team building, we had an okay day in the mountains. For my wife, being on a bi-ski didn’t really feel like skiing. It felt more like sledding because she had no control over where she went. She couldn’t help asking:
“Is this the way it’s going to be from now on? Will I ever be able to ski on my own feet again?”
Little did she know that two years later she would return to the same mountain under very different circumstances.
HELP AND HOPE
There is no typical MS patient. That’s typical for the disease. Scientists have identified different types of Multiple Sclerosis, some more “benign” than others. My wife has Relapsing Remitting MS which is most common. It’s characterized by sudden, unpredictable attacks when symptoms worsen, followed by a full or partial recovery that may take days, weeks or months.
September 26, 2010 was an encouraging day for the MS community. The US Food and Drug Administration (FDA) approved fingolimod, the very first oral treatment for relapsing forms of MS. It was developed by Novartis and it’s marketed as Gilenya™.
Let’s be clear about one thing. Gilenya™ does not cure MS. What it can do is reduce the number of relapses, thus slowing down the physical problems caused by this disease. As with all drugs, results are not guaranteed and vary from patient to patient.
Within weeks after taking one pill a day, my wife started feeling better. She gradually regained strength and started working out again. While I was spending my days sitting in a recording studio, she was running on treadmills, lifting weights and doing yoga. A year later, her scooter, wheelchair and cane were collecting dust. But it gets even better.
Last summer Pam climbed all 465 steps of the highest tower in The Netherlands, and she rode 50 miles on a tandem bike with Phil Keoghan’s NOW and Novartis for MS team of professional cyclists.
On September 29th, 2012, she joined 7500 participants for the Bike MS City to Shore event, riding her own bike and finishing ahead of most of her able-bodied team members. She has yet to have a relapse.
Recently, our family returned to Belleayre on one of those crisp, bright winter mornings. This time we went straight to the main lodge, we put on our gear and hit the slopes. It seemed amazingly normal, but silently, we were celebrating.
My wife’s recovery cannot completely be attributed to some “magic pill”. Pam has to pace herself, avoid stimulus overload and make sure to follow a healthy diet and stay active. A positive mindset is a big plus. She stresses that she’s not some kind of superhero. Some days are definitely better than others. A cure has yet to be found.
- Stopping the disease
- Restoring what’s been lost
- Ending MS forever
I know this blog is read and enjoyed by many of you. That’s one of the reasons I take a day out of my week to write and respond. If you feel you have benefited from my articles, ideas and suggestions in the past year and would like to show your support and appreciation, please consider this.
Make a donation to the National Multiple Sclerosis Society today.
It only takes 100 readers to donate $25 to get to the amount of money we raised last year. Somehow, I don’t think we’re going to get there.
I think we can do even better!
When you click on this link, you will be taken to my Walk MS page. Scroll down to the Donate to Paul-button, and surprise me.
We still have a few mountains to climb, but every donation gets us closer to a cure.
Paul Strikwerda ©nethervoice
Be sweet. Donate and retweet!