MS: Our Story

On February 15, 2012, in MS Stories, by Dave Schwarber

Circumstances are circumstances. We all have trials. And we all choose how to respond. This is one such story.

My story.

Our story.

AT FIRST SIGHT

Barb and I met at an office party in 1976.

It was love at first sight (at least for me☺).

Barb was very athletic. The day after we met, we had a company picnic. I pictured myself as somewhat of an athlete also, but in the softball game that day, she hit a ball so hard she put me on my butt (although I still tell her it was wet and I slipped)☺. It seemed that everything we did, we did together. We loved hiking and softball and golf and canoeing – and even snake hunting. Anything in the outdoors was fair game.

We got married in 1978, bought a house in 1980, and had our first child, a daughter, in April of 1982. We still loved the outdoors, and spent as much time as we could playing sports, camping, or just relaxing in the back yard. In 1984 we had our second child, a son, and life couldn’t have been more perfect.

That’s when our story really begins.

I was on a fishing trip with the guys shortly after my son was born, when I got the call. Barb was having trouble with her vision, and had gone to our ophthalmologist. His diagnosis: retro bulbar optic neuritis, a common indicator of Multiple Sclerosis. A week later, after a battery of tests, the diagnosis was conclusive.

Barb had multiple sclerosis.

It sounded sinister. Final. Neither of us knew much about the disease. But we learned quickly. MS affects over 450,000 people in the US, and over 2.5 million worldwide. It has no known cause; no standard progression; no firm prognosis. You never know what today – or tomorrow – will bring.

Barb started off with the most common form of the disease, relapsing/remitting MS. In this phase, the disease follows a course of attacking, then subsiding, with the patient recovering almost fully after every exacerbation. It could show itself in any number of ways, including, but not limited to extreme fatigue, muscle spasms, sight problems, weakness in the extremities, lack of control over the muscles, etc. The good news was that, almost every time, after a few days treatment with steroids, Barb would bounce back to her old self.

Life went on this way for about 15 years or so.

Some years were better than others, but we still hiked, played golf, camped, and did the things we loved as often as possible. Then, in a twist of fate, several things happened in a few months. Barb stopped bouncing back from her exacerbations. MS had reared its ugly head, and her disease turned more sinister. She now had the next stage of the disease, termed secondary progressive.

In the secondary progressive phase, instead of bouncing back to normal after an exacerbation, the person only recovers partial function. So they basically go into a steady decline. They may recover 85% after an episode, then 85% after the next one, and so on. It’s a steady downward progression. Barb has been in that stage for the past 6 years or so. She’s gone from an athlete to someone who sometimes struggles to dress herself in the morning.

Barb has lost some function. We no longer play ball, hike, golf, or do anything requiring legs. But we still enjoy the outdoors.

And we still enjoy each other.

And she is still my idol.

She refuses to let her medical condition control her life.

If she can’t walk, she uses a walker.

Or a scooter.

Or a wheelchair.

Or she just crawls.

But she NEVER QUITS.

Barb  refuses to let MS control her life.

Hers is only one story. There are many such. Their point is that life goes on. Bad things sometimes happen. We all have trials. And we all choose how to respond. We’ve faced our share of adversity, as most people do. Our only daughter was diagnosed with a much more aggressive form of MS just 5 years ago, when she was 23.

Barb & Amy Schwarber

Barb still goes on with life. As does Amy. As do many people with MS. There are a lot of heroes out there, but Barb will always be mine!

Do you have a story you’d like to share? Contact me.

– Dave

NEVER QUIT – FIGHT MS





HELP US “NEVER QUIT” DONATE NOW

 

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Amy – My Story

On April 5, 2011, in MS Stories, by Dave Schwarber

Hello, my name is Amy Schwarber and I was diagnosed with multiple sclerosis 5 years ago. Before that …

… I was a student, an athlete, and a child of a parent with MS. Thanks to my mother, Barb, I had (to say the least) a basic knowledge of the disease. I researched it for school papers, my own curiosity, and my mom even participated in a school program called Everybody Counts to explain her disease to my classmates. I never could have imagined the extent to which this knowledge would come in handy.

It was Christmas Eve 2005, and I came home to spend the holidays with my family. The day was going great! I remember talking with my parents and brother on our way to church, just catching up on life and enjoying the company. Everything was normal and life couldn’t have been better as we walked into mass. The ceremony was beautiful, and as we headed to my grandmother’s house to celebrate, we were filled with the joy and anticipation of the season. I was yakking away in the back seat of our van when the left side of my face (including my tongue) quit working and turned numb.

The words I was trying to say wouldn’t come out; instead, it was an unintelligible garble. Immediately, everyone turned around, and I could tell something was really wrong by the look of horror on their faces. They kept asking what was wrong. I kept trying to answer, and, as I heard the awful sounds coming from my mouth, I began to get really scared.

We were close to my grandmother’s house so we continued there instead of diverting to a hospital, primarily because one of my aunts is a Doctor and one is a Registered Nurse, and they were  there waiting. As we walked in, I noticed I had begun to drool and had lost all feeling in the left side of my face. I went to the bathroom so I could get my head together! What was going on? My left hand didn’t want to cooperate either! I began to cry as my aunt’s told me they thought I was having a Bell’s Palsy attack.

We quickly got back into the van and rushed to the hospital. They ruled out a Bell’s Palsy, and began checking to see if I had a stroke. That came back negative. They admitted me to the hospital, and I kept explaining as best I could that my mother has MS. They said it didn’t matter, because it wasn’t hereditary. The tests continued – CAT scans, blood tests, X-rays, and so on – days were passing, and still no diagnosis. i didn’t realize how many times and in how many places they were able to stick you! Several days passed, and they did an MRI just before the New Year.

It finally came to light… I had 3 lesions on my brain. The diagnosis: I had MS. As the words rolled off the doctor’s tongue, everyone in the room began to cry. I was crying, mainly because it was a relief finally hearing a diagnosis. Everyone else, because they understood what was facing me. It’s a devastating disease, one that affects 2.5 million people, but one that has no standard course, no real prognosis, and, most importantly, no cure. But I didn’t feel too bad – I had the best resource in the world – my mother – to draw on. And with her “never quit” attitude, she was an extremely positive role model.

That year and most of the next went pretty well, so I became complacent, skipping doctor’s appointments (or not even making them) and continuing my life as if nothing had happened. I was a general manager at a pizzeria, working 70-80 hours a week. Finally, in 2007, it caught up to me with a vengeance! I was hospitalized virtually every month with a serious exacerbation. They were coming so close together that another one would begin before I had even recovered from the previous one.

Unable to walk, with no ability to control my bladder or bowels, unable to write or type, I finally accepted the fact that ignorance wasn’t getting me anywhere. My neurologists suggested that I apply for disability, so I did with the help of an attorney, who advised me that it would most likely take a couple of years. Much to my surprise, 6.5 months later I got my letter of approval. That is when it hit me – because of my ignorance, I had let my MS progress so fast I now had 18 lesions on my brain, 3 on my spine and a lifetime of therapy ahead of me. I knew that I HAD to change my attitude.

Knowledge is power. So I started again, researching the disease from a “patient’s” point of view. I went to every doctor’s appointment. It seemed as though it was every day of the week. NEVER QUIT. My mom doesn’t know this, but that is what I would say to myself every day when I woke up – every time I stumbled; fell; had problems typing; or incontinence struck; you name it. Something else mom told me also helped me through the everyday difficulties MS patients face: When you stumble, make it part of the dance (they actually have a plaque that says this displayed prominently in their condo). I began to accept and adapt to my “new” body. Survival of the fittest, ya know? What other option is there; just lay there and feel sorry for yourself, defeated?

In February 2009, my wonderful team of neurologists who worked so hard on my case made a couple of discoveries. First, they noticed that many of my hospital stays were 1 to 2 days after I started my period. They decided to suppress my periods. They also put me on a risky “last resort” therapy called Tysabri since my other medications had been ineffective. Within a couple of months I could walk, talk, write, type, and control my bowels and bladder. Now, two years later, I have lost over a hundred pounds and haven’t experienced a single serious exacerbation.

So, if you learn anything from my story, let it be this: ignorance may be bliss, but knowledge is power. A strong support system is priceless, and I thank God every day for my extended family – parents, grandparents, aunts, uncles, cousins, and friends – especially my parents! And a good and knowledgeable caregiver makes life much more livable.

My advice? Be proactive, and of course, NEVER QUIT!!! I love you mom! Thanks Joshua! And all my thanks to everyone who has prayed for us, researched, walked, or donated for the cause! And thank you very much to my father for taking the best of care of my mother, me, and all the research, effort, and time he has put into this website to hopefully help as many people as possible.

God Bless!

 

Barb Schwarber – Walk MS Butler County Ambassador

On March 28, 2011, in MS Events, MS Stories, by Dave Schwarber

Barb Schwarber is the 2011 Walk MS Butler County Ambassador. Barb and her team, Never Quit, have participated in the Butler County walk for the past 8 years. She is an avid Cincinnati Red’s fan and enjoys cooking. Her hobbies include indoor/outdoor gardening and collecting teddy bears. In the past, she played softball, swam, ran track, golfed and bowled regularly. Having been very active in the past, it was difficult to face being diagnosed with multiple sclerosis in 1985.

Barb says that MS is a challenge, and has made her sensitive to other people with physical   challenges. “It’s a daily struggle,” she says, “and it has forced me to focus on what I can do, not what I can’t.” 

Barb and her team, “Never Quit,” participate in Walk MS every year. “We learn more about the lives of the people involved and are energized by their support,” she says. Barb says it’s fun and rewarding to see so many people who care. Barb says the MS Walk is a great way to meet other people in the same situation, learn of available sources and find out how others are dealing with similar issues. “It’s a wonderful testament to hope.”

Barb says she encourages other people with MS to not have a pity party for too long. “You can’t change what you have, but you don’t have to give in or give up. Laugh often, even at yourself, but above all, NEVER QUIT!”

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Walk with Team Never Quit on April 28, 2012

On March 11, 2011, in MS Donations, MS Events, by Dave Schwarber

Join Team Never Quit for the walk on April 16, 2011.

Come join us in walking for a cure on April 17, 2010. Team Never Quit walks in the Butler County Walk, which will begin at the Tri-Community Center in Oxford, Ohio. We’re trying to get a LOT of participants this year. It’s a fun walk in a beautiful setting, and it’s healthy for you also!

It’s 2012, and time for me to reach out again to friends and family for help in defeating MS. I’d like to start by expressing my gratitude for the love and support you’ve shown us over the years. It has meant so much to Barb, Amy and me, along with the thousands of others suffering with MS. The last couple of years have been especially exciting for us, as the research your donations have helped fund are finally beginning to pay some dividends.

2011 was an exciting year. There was a lot of progress in research on the disease, and hopefully, a cure will be found in our lifetime! My daughter Amy is doing well. Now in her sixth year with the disease, she made the decision to continue into her 2nd year on Tysabri. The risk increases every year, but the positive changes to her life far outweigh the potential risks. For my wife Barb, it was a little different. She’s lived with MS for over 27 years now, and the physical toll it’s taken on her body is beginning to show. It’s become much more difficult for her to do some of the things that you and I take for granted, like getting dressed or just moving around the house. It takes her ten, twenty or even fifty times longer to do simple things than it does a healthy person. Her spirit is still unchanged though, and she continues to treasure her independence. She really is an inspiration to me and to everyone who knows her.

Our team, NEVER QUIT (Barb’s motto), will be walking again this year in the Butler County MS Walk on April 28 – others from our team will be walking in the Cincinnati event on the same date.

So how can you help? There are several things you could do, among them:

Team Never Quit will walk again in the Butler County Walk, which will begin at the Tri-Community Center in Oxford. We’re hoping to see a record number of walkers this year. It’s a fun walk in a beautiful setting, and it’s healthy for you also! To join our team, click Donate to Never Quit! and then click Join Team.

Try to get there between 8:30 and 9:30 if you can. This will enable us to get a team picture before we get started.

ANY WALKER WHO DONATES OR RAISES $100 WILL ALSO GET A FREE T-SHIRT THE DAY OF THE WALK

Donate (if you can)

To support this cause with a personal donation, just click Donate to Never Quit!

If you prefer writing a check, please make it payable to the National MS Society and either give it to me or mail it to me at 3308 Emerald Walk, Cincinnati, OH 45211. If you do write a check, please put “Team NEVER QUIT” in the Memo line. Whatever you can give will make a profound difference!

Keep us in your thoughts and prayers!

I’ve seen first-hand how your donations help. The progress they’ve made over the past few years in treatments for MS have helped Amy a lot, and they are closing in on several different things I (and they) believe will help in reversing this disease, which would certainly help Barb. Let me close by saying again that I greatly appreciate your support and encouragement you’ve shown us.

With grateful heart,

Dave  Schwarber

Donate to Never Quit!

 

P.S. If you would like more information about the National MS Society, how proceeds from Walk MS are used or other ways you can join the movement toward a world free of MS, please visit www.fightMStoday.org <http://www.fightMStoday.org.

 

MS: Our Short Story

On March 8, 2011, in MS Stories, by Dave Schwarber

My hero is my wife, someone who never quits and who never thinks of herself, even after almost 30 years of MS.

My wife has been diagnosed with MS for over 25 years.

And 5 years ago, on Christmas Day, my daughter was diagnosed with the disease. They deal with uncertainty every day. Will they be able to walk? Will their hands work so they can get dressed? Will they have enough energy to do what they need to do or will fatigue do them in early? Will their legs work well enough for them to walk to the next room, or will they have to crawl? These are some of the questions that haunt them every day. Life isn’t easy for them, nor is it easy for the other 465,000 people in the United States or over 2and 1/2 million people around the world who have MS.

Even though they have physical challenges, they are my heroes. They refuse to give up; they NEVER QUIT. They know that they can’t change their circumstances, and that life still goes on. They know that we all have trials, and we all choose how to respond. And they respond like the champions they are.

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Flickr photo courtesy of H. Kopp Delaney

 

Why We Fight

On March 8, 2011, in MS Donations, MS Stories, by Dave Schwarber

Having multiple sclerosis means that you may not be able to walk when you wake up. Or that you may suddenly have impaired vision. Or that your memory will fail you for no apparent reason. The symptoms of MS are different, and and can be devastating, for everyone; the only certainty is that it will […]

Having multiple sclerosis means that you may not be able to walk when you wake up. Or that you may suddenly have impaired vision. Or that your memory will fail you for no apparent reason. The symptoms of MS are different, and and can be devastating, for everyone; the only certainty is that it will affect yet another person every hour of every day.

JOIN OUR TEAM

Why I Walk

I’ve registered for the MS Walk because I want to do something for my wife and daughter, as well as the millions of other people who have been diagnosed – and because I want to do everything to prevent more people from learning what it means to live with this disease. Today, there is no cure for multiple sclerosis, and with a diagnosis occurring most frequently between the ages of 20 and 50, many individuals face a lifetime filled with unpredictability. My daughter was diagnosed just five years ago – on Christmas Day. She was just 23 at the time.

But the research your donations fund do make a difference! In 2008, she was already unable to work and had been told by four different neurologists that they’ve never seen such an aggressive case in such a young person. In 2009, she started on Tysabri, and has regained much of her mobility! My wife Barb has been fighting valiantly against the disease for over 25 years, and we still hope that research will find a way to reverse the negative effect it’s had on her body.

Why You Should Sponsor Me

The National Multiple Sclerosis Society will use funds collected from the MS Walk to not only support research for a cure tomorrow, but also to provide programs which address the needs of people living with MS today. Because we choose to walk for those who sometimes can’t, because we choose to donate to the MS Walk, we are getting closer to the hour when no one will have to hear the words, “You have MS.” It may make a real difference in my daughter’s experience with the disease and my wife’s ability to keep fighting it.

DONATE HERE

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You Can Make a Difference

On March 7, 2011, in MS Events, MS Stories, by Dave Schwarber

You can make a big difference in the lives of many people who suffer from MS. There are many ways to help, but two immediate ones are by starting or joining a team and by donating or requesting donations to fight MS.

We can all make a difference in the lives of people with MS. Several things you could do in the short term include:

Join a team (or our team – Never Quit) for one of the local walks on April 16, 2011, or for the Greater Cincinnati Walk on May 7. Team Never Quit walks in both the Butler County Walk, which will begin at 10:00 on April 16 at the Tri-Community Center in Oxford, and in the Signature Walk in Cincinnati on May 7.

JOIN NOW

We would like to get a record number of participants this year. The walks are a lot of fun in a beautiful setting, and it’s also healthy! Any walker who donates or raises $100 will also get a free t-shirt the day of the walk.

DONATE NOW

Donate (if you can) – – whatever you can give will make a profound difference in the lives of people with MS. To support this cause with a personal donation.

I’ve seen first-hand how your donations help. The progress they’ve made over the past few years in treatments for MS have helped my family a lot, and they are closing in on a cure. Let me close by saying again that my family and all who suffer from MS greatly appreciate your support and encouragement!

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A Ray of Hope in the Cure for MS

On March 5, 2011, in MS Research, by Dave Schwarber

Breakthroughs in research are providing a ray of hope in the lives of many who live with this horrible disease.

My wife, Barb, has been diagnosed with MS for almost 30 years.

 

An active person from the start, the disease has forced her to make many changes to her lifestyle over the years. She’s reluctantly given up softball, hiking, canoeing, walking, golf, and many other things that most of us just take for granted. Simple things, like buttoning her blouse or walking 5 steps to answer the door are at best an aggravation for her, and sometimes, they’re impossible.

MS research, in just the past couple of years, has begun to shine a ray of hope in her life, and in the lives of others like her. The search for a cure has never yielded so many exciting breakthroughs in such a short time. Researchers are beginning to isolate the causes of the disease. They are progressing toward a cure (several in fact). They are releasing new treatments to help patients walk; to minimize exacerbations; to slow its progression.

This research, which is so vital, is funded by donations and grants. Can you help?

“HELP US “NEVER QUIT” –  DONATE NOW


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Announcing the “NEVER QUIT – FIGHT MS” Website

On March 3, 2011, in MS Donations, MS Research, by Dave Schwarber

What’s this site all about? Mainly, it’s about loving and caring and helping others. It’s about the unsung heroes who take one day at a time, put one foot in front of the other, and most of all, who NEVER QUIT, no matter what life throws in their face. It’s about the hundreds of thousands of people with Multiple Sclerosis, a degenerative disease of the nervous system. And … It’s about my wife Barb and my daughter Amy, who both live with MS.

Why I Walk

On March 2, 2011, in MS Events, MS Stories, by Dave Schwarber

I’ve registered for the MS Walk because I want to do something for my wife and daughter, as well as the hundreds of thousands of others people who have been diagnosed – and because I want to do everything to prevent more people from learning what it means to live with this disease.

I’ve registered for the MS Walk because I want to do something for my wife and daughter, as well as the hundreds of thousands of others people who have been diagnosed – and because I want to do everything to prevent more people from learning what it means to live with this disease.

Today, there is no cure for multiple sclerosis, and with a diagnosis occurring most frequently between the ages of 20 and 50, many individuals face a lifetime filled with unpredictability. My daughter was diagnosed just 4 years ago. And the research your donations fund do make a difference! In 2008, she was already unable to work and had been told by 4 different neurologists that they’ve never seen such an aggressive case in such a young person. Last year, she started on Tysabri, a new treatment, and has regained much of her mobility!! Barb has been living with and fighting valiantly against the disease for over 25 years, and we still hope that research will find a way to reverse the negative effect it’s had on her body.

Why You Should Sponsor Me

The National Multiple Sclerosis Society will use funds collected from the MS Walk to not only support research for a cure tomorrow, but also to provide programs which address the needs of people living with MS today. Because we choose to walk for those who sometimes can’t, because we choose to donate to the MS Walk, we are getting closer to the hour when no one will have to hear the words, “You have MS.” It may make a real difference in my daughter’s experience with the disease and my wife’s ability to keep fighting it.

DONATE HERE