Do you remember where you were, two years ago?
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.
The National MS Society (NMSS) supports and funds research activities with three goals in mind:
- 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.
We still have a few mountains to climb, but every donation gets us closer to a cure.
Paul Strikwerda ©nethervoice
PS Click here for more information about Multiple Sclerosis.
Be sweet. Donate and retweet!
Anne Ganguzza says
Oh Paul, I LOVE this! Thank you *so* much for sharing and many many blessings to you and your wife. My Uncle has had MS for years and I know how difficult it can be. What an inspiration you and your wife are! Thank you a million times over for sharing your story! xoxo
Paul Strikwerda says
Thank you so much, Anne. We count our blessings each and every day. In May we’ll be participating in the annual Walk MS event, and later this year both of us will do the City-to-Shore ride to raise money for the MS Society.
John LaPiana says
I always enjoy and appreciate your posts about voiceover, but these glimpses into your personal life are very special. Thank you for sharing Paul (and Pam!) I’m happy to help you reach this year’s goal.
It might interest you to know that my wife was just selected to participate in the genetic/environmental research study for first-degree relatives of people with MS. She’s very excited about it & I know her brother would have been very proud of her.
Paul Strikwerda says
Thank you so much for your moral support and your donation, John. I’m usually quite hesitant to post about my private life because the this supposed to be a professional blog. However, this is obviously a cause I care so much about, and our voice-over community is amazingly supportive.
Without proper research, science can’t get to the bottom of this nasty disease, and I’m sure your wife can provide valuable information that brings us one step closer to a cure. I’m so glad she’s participating in the study!
Marc Scott says
Many blessings to you Paul. I hope you not only reach, but far exceed your fundraising goal!
Toni Orans says
Thanks Paul for sharing this and opening up in a way I know you don’t usually do. It’s very courageous and reminds us all that we ARE human after all – as one works continually on having a positive attitude regardless of what obstacles we personally face, there are challenging stories behind the smiles and masks. Though one wants to be professional thru our communications with others in the business, I think it’s also important to honor the trials and tribulations that if nothing else, hopefully give each of us the fortitude and determination to follow our path with dignity.
So, I really do thank you for sharing this and send your beautiful wife wishes for continued better health and growing stronger every day.
Paul Strikwerda says
Heartfelt thanks for your good wishes, Toni and Marc. People in the MS community often say: “I may have MS, but MS doesn’t have me.” My wife is the embodiment of that saying. She’s a professional musician and she continues to perform and teach. She’s also organizing the second Music for MS concert in our hometown of Easton. This weekend we’ll be hitting the Pennsylvania slopes again!
Chris Mezzolesta says
Well Paul you know my story…MS has been in my life and on my radar since 1977 when I was 13 and after a number of months of puzzling behaviors and symptoms, my mom suddenly couldn’t get of bed one day. She never got out of bed the same way ever again. She never spoke, moved, swallowed, or lived the same way ever again, it has been a constant getting used to a “new normal” since then due to her having Secondary Progressive MS. While she retains all her mental faculties and razor wit and large personality, it is all tempered with her inability to express herself as she wishes, or in some cases to have basic functions work (eating etc.). I’ve gotten really good at lip reading over the last 30-some years since her paralyzed larynx and compromised lips/tongue won’t let her get a full voice out; no matter how mild or severe the case or type, MS is a horrible disease and I am so glad that Pam is responding to the Fingolimod, there have been no such advances for Secondary Progressive tho my folks stubbornly continue searching for the next possibility. I also want to thank you and the folks who have responded with donations to help in whatever way possible…it’s an awful thing and hopefully one day soon we’ll get it figured out. All the best to the both of you.
John Lano says
What an incredibly inspiring story, Paul. Pam sounds like a very strong and brave woman. You’re pretty lucky. 🙂
As others have said, I hope you reach your goal and then some!
Paul Strikwerda says
Chris, I will never stop raising money and awareness for MS until there is a cure for people like your mother and my wife. I am heartened and strengthened by the support from my community. Hopefully, I won’t have to ask for their support in a few years time, but auto-immune diseases are complex and often mysterious. John, my ultimate goal is to make fundraisers like this one unnecessary. Then I will devote part of my time to another important cause.
Karl Littardi says
Keep going you two.
You’re doing so well already!
Steve Krumlauf says
No, I’m sorry I missed your earlier profile on Pam. It all makes perfect sense now.
You are indeed a blessed man!
PS: Pam should meet Joni (JAHN-ee) Eareckson Tada some day. She has a web site. Pam and Joni share very similar stories.