An MS Journey

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“A Picture of Health on the Outside”

I was only 25 in 1980 when my MS symptoms started. My career was taking off, I was newly married, and my husband and I were active outdoors doing things like skiing and dirt bike riding. Life was good. But like all newly-diagnosed people with MS, the fear of having the rest of my life ahead of me with a chronic, debilitating, progressive disease with no cure was frightening to say the least.

What kind of life could I expect?

Flash forward to present day, 35 years later. Life has been good despite the challenges of living with MS while also dealing with other challenges in life that “normal” people endure. Adjustments to changes in my life seemed constant, as my MS Blogger Buddy Nicole Lemelle would say, would become “My New Normal.” And I’m currently facing two more…

Truthfully, I hate MS—it’s interfering, unpredictable, and invisible in so many ways. I didn’t have a choice about getting it, but I did have a choice about whether I was going to let it control me or manage my life. It took time, but I learned to manage my MS well. It helped that I am a positive person with an “I can do this” attitude.

Difficult decisions had to be made—giving up my career, having only one child, going on disability, having to move out of my house… It was hard. But amazingly for me, in the end each difficult decision resulted in a good outcome.

I can honestly say that I have, and will continue to have a fulfilling  life with my husband of thirty-seven years and my 32-year old son. Not only have I been an avid swimmer, crafter, and reader for as long as I can remember, my love of history and nature was satisfied after visiting all fifty States, seven countries in Europe, Canada, Mexico and the Caribbean. Many of these trips I made in a wheelchair.

As I journeyed through motherhood, I enjoyed being a soccer mom, wrestling mom, homeroom mother, and a volunteer in my son’s school, church and community. In-between, I learned Spanish and tutored high-schoolers for fifteen years. And I was involved as a volunteer and in other roles in the MS community for the past thirty years. I’m proud to say I authored a book, Managing MS: Straight-Talk…  published in January 2012, and since then learned social media and built a website through which I have interacted within the MS community since.

I have always practiced health and wellness as a critical component of managing my MS and chose my medications carefully. Good sleep, regular fitness, healthy diet choices, stress management… Recently at my annual physical, my doctor said to me “I have good news and I have bad news.”

The good news? Out of all her patients that day, I was the healthiest– perfect scores on all my tests: blood pressure, weight, cholesterol, pulse, circulation, Vitamin D, calcium, and all the other things that are measured when blood is checked.

The bad news? I have severe osteoporosis in my hips and osteopenia in my spine—the worse she has ever seen. I had most of the risk factors for it: genetics, years of steroids, being thin, post-menopausal, and little weight-bearing fitness due to being in a wheelchair for fifteen years. The first of two new adjustments that I have to research and work on. This is serious stuff.

When you look at that picture of me, it is a definite portrayal of that old expression that makes all of us with MS cringe: “But you look so good!” You can’t see the osteoporosis, just like you can’t see so many of my MS symptoms. Though I use a scooter or wheelchair because I can’t walk anymore, many folks have asked me if I had an accident. They can’t see the pain, the numbness, weakness, the bladder/bowel problems, or the fatigue and emotional issues that I live with daily.

And now that the new ridiculous TV commercial about Tecfidera is airing, people are getting the misconception that there is a pill—a cure—that Relapsing/Remitting MSers can take that will give them the ability to be active and normal all day long. What a hurtful setback for me and all of the other MS patients that have been trying so hard to get people to understand what MS really is all about.

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                                                     Shame on you, Biogen.

I don’t know. At first I thought that no awareness was better than misleading awareness, but maybe this commercial will stir up the pot and get people talking more about MS.

 

Throughout my entire life, I have always been a doer and a helper with some purpose to serve. Even in the toughest spells throughout my life due to MS or something else, I forged forward to reach out. However, I’ve reached the point where I’m so tired and I hurt almost all the time now. I have been wrestling with this question for a while, “Is it time to quit?” That means the second, big adjustment into unknown territory—true retirement.

 

Actually, I won’t let go of everything completely; I will share and care about MS on a limited basis through my social media sites. But I’ll let the MS blogging be carried on by great, credible others that I got the privilege of knowing from social media and attendance to a MS Blogger Summit sponsored by EMD-Serono/Pfizer:

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MS Bloggers and some Significant-Other Caretakers

   (Sitting, L to R)
Laura Kolaczkowski
Lisa Emrich
Nicole Lemelle,
Lisa Dasis
Yvonne Desousa
Debbie Petrina
(Standing, L to R)
Jon Chandonnet
David Lyons
Stuart Schlossman
Dave Bexfield

There are other great MS bloggers around too, such as those on Multiple Sclerosis.net, that can be trusted to obtain quality MS info, inspiration and education.

Living with MS for 35 years and being involved with the MS community in so many ways teaches a person a lot of things. This is the last page of my practical MS guide book Managing MS: Straight Talk From a 31-Year Survivor that I published in January 2012:

Final Words of Inspiration

September 28, 2011

Life is precious, challenging, and worth getting out of it what you can.
Being a lover of American history, one of the items on my bucket list was to visit the actual trail of the Lewis & Clark expedition. I just returned from an RV road trip with my husband and brother to do this. During the trip, I reflected on the similarities of their journey and life with MS.

When Lewis & Clark began their journey to the Pacific Ocean across the continent, they went into unknown territory. Daily they encountered obstacles in the wilderness they had to overcome, and had to rely heavily on the support of each other/ strangers, their skills, ingenuity, and creativity in order to survive and prevail. The team of thirty-three persons suffered; one died. They experimented. They documented. They learned. They managed and accomplished incredible hardships. There were moments of the deep despair and defeat, and moments of high joy and success.

They found their way. I found my way. You will find your way.

                                                                                       Debbie

www.DebbieMS.com 
Author, MS Counselor/Consultant

 

*Image courtesy of “rakratchada torsap” portfolio at Free DigitalPhotos.net

Learn Quickly about Multiple Sclerosis–All in One Place

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                                        Need Easy and Accurate Direction?

Confused? Afraid? Newly diagnosed? Think you or someone you know might have MS but don’t know where to start? Weird things going on with your body and you don’t know what to do? Your neurologist is not helpful or available? You are lost in cyberspace trying to get info?

Since I have lived with MS since 1980 and have been involved with the MS Community for almost thirty years, I know this disease inside and out. Seeing a great need to have a lot of credible “What-to-know—What to Do” MS information all in one place, I rolled up my sleeves and got to work. It now exists, and the positive feedback I have received from people has been equally overwhelming and gratifying.

I can help in two ways:

My Book: Managing MS: Straight Talk From a Thirty-One Year Survivor

I wrote a simplified, practical, all-in-one self-help guidebook for managing and understanding MS to help others dealing with this invisible, unpredictable, disabling disease. Within hours, you will gain knowledge and support so you can take action, which will reduce your fears.

Recently I received this email, one of many:

“OMG what a fantastic book in many ways. I want to give it to everyone I know so that they can understand it from the inside. Your section on invisible symptoms is fantastic. Everyone needs to read this book. Thank you, Debbie.”

Why should someone read THIS book? (Click here)

There are many books about multiple sclerosis; but I like to point out these things about mine:

• I felt it crucial to make it an easy read using a tone, words and expressions that would enable the reader to feel comfortable. Like I am talking at the kitchen table with them. Living with MS is frightening; one of my objectives was to help reduce the fear.

• Living with MS is not easy and is very complicated in many ways: the symptoms, the treatments, the medical professionals, relationships with people, the emotions, and the advancing disabilities. Thus, another objective of mine was to offer guidance and tips for managing these things in a manner that is easy to understand—like an instruction manual. I strived to make it compact, informative, and inspiring.

• This guidebook is a collaboration of both my experiences and those with peers, professionals, and others that I interacted with about MS in for decades.

• My manuscript had been read and endorsed by health care professionals in different fields that I believe lends credibility: An MS specialist neurologist, an internist, a MS physical therapist, and nurses.

• Though I share personal experiences, it is NOT an autobiography, full of medical terminology, nor does it contain the latest breakthrough drug or study.

WHO should read this book? Anyone who might have MS, has been diagnosed with MS, family, friends, or people who deal with MS patients such as doctors/healthcare personnel.

Diane Perry, NPC, AT Consultants in Internal Medicine in Glendale stated:
“As a nurse practitioner, the book opened my eyes to the effects of the disease on my patients’ lives and their needs. This is not a textbook read.”

Carol Daily, CRNP MSN, in her review said “This book should be given to every person having MS, I encourage any MS organization, medical staff, family or friend to do so and to read it also, especially the medical staff, (so you guys can give better advice).”

I encourage you to check out reviews on Amazon.

My Website DebbieMS: A Wealth of Info in One Place

I counsel, write, educate, research, and advocate awareness/understanding of MS through my website www.DebbieMS.com and other social media. In addition to info about my book Managing MS: Straight Talk…, the website includes my background/credentials, self-help/educational videos on a wide variety of topics, links to my 80+ MS Blog articles, an extensive list of helpful resources/articles, and other activities I engage in to help persons dealing with MS.

I continue to add to it, and especially use twitter and various MS Facebook group sites to share current research and developments about MS on an ongoing basis. People can also write to me through my site and ask me anything.

Please go to my website and check it all out. You have nothing to lose, and a lot to gain!

www.DebbieMS.com
Author/MS Counselor/Living with MS

 

**Image courtesy of Stuart Miles at FreeDigitalPhotos.net

Kristie Salerno Kent’s New Memoir “Dreams”

“My Journey with Multiple Sclerosis”

December 10, 2013

Kristie Salerno Kent is a singer, songwriter, producer, wife and mom. At the prime of her life, she is gorgeous, successful and now an author of a book. To look at her or listen to her, you would say she is lucky. But she will tell you that at one time in her life she didn’t feel lucky. Kristie has MS.

In her new memoir, “Dreams: My Journey with Multiple Sclerosis”, Kristie travels full circle as she talks about her dreams before her MS began, how her life and dreams became disrupted with her MS diagnosis/progression, and how she overcame the disruption through her music to once again dream and fulfill her life. Kristie feels blessed.

As Kristie openly tells her story, she takes us through her steps of the grieving process that one goes through when diagnosed with a chronic illness: denial, depression, anger and finally acceptance. Within the context of own experience, she specifically incorporates details of the challenges one faces with MS—the invisible, unpredictable and interfering symptoms—that create confusion, limitations and fear since there is no cure. Am I imagining this? What should I do? Where should I go? Who shall I tell and what do I say? How can I make this better?

She experiences the other severe implications of MS like fatigue and heat, and how they significantly impact even the smallest tasks. How can you explain these things to someone and help them understand the disturbances they cause when on the outside “you look so good?”  Kristie will tell you about this.

As the years go on in her life, she also tells about the adjustments, changes and choices she made to move forward in her life while never losing hope. Kristie writes in a fashion that is engrossing, easy to understand, and inspiring. One main message in “Dreams” is hope. Hope for herself. Her hope to help others understand the complications of living with MS. And hope that despite having MS, one can continue to pursue dreams.

When Kristie overcame her denial and depression, she wrote and produced her first album, “Believe.” She wants others to believe in themselves to fulfill their dreams despite difficult challenges that life can cause them. Kristie also produced an award-winning documentary, “The Show Must Go On,” to explain the symptoms of MS (http://www.youtube.com/watch?v=6oraM8IF2Gc). Now a mom of two small children, Kristie is a paid spokesperson for Acorda Therapeutics and travels across the U.S. to advocate for people living with MS.

The holiday season is meaningful. Starting with Thanksgiving, it is a time to be thankful for what you have and can do. Christmas and its sister holidays are a time of peace, joy, love and giving. With the New Year comes hope, new dreams, and reflection.

So if you want to read a book that packages all those things together, read Kristie Salerno Kent’s “Dreams: My Journey with Multiple Sclerosis,” available through a free (yes—free!!) download at www.DreamsTheEBook.com.

You will learn, relate, and walk away feeling inspired. I certainly did! And tell your family and friends about it, too. The more people both with and without MS understand this neurological disorder, the better off we will all be. 🙂

www.DebbieMS.com

Tell Jack Osbourne: We Need You After DWTS

“Be our Jerry Lewis?”

November 20, 2013

As I listened to Jack Osbourne talk frankly about his MS on Dancing with the Stars Monday night, I made a wish. I wished Jack would be an ongoing voice for the multiple sclerosis community after the program concludes. He has created awareness of MS and has inspired so many these past couple of months; however, when the show is over, I don’t want the buzz he is creating to be forgotten.

We have needed a well-known person that could do the same thing for multiple sclerosis that Jerry Lewis did for years with representing and fundraising for muscular dystrophy. But Jack could do even more in a different way, because Jack, unlike Jerry, lives with MS. He is one of us which makes him credible. And people like Jack.

I have been very involved with the MS community since my own diagnosis in the early 1980’s. While research has intensified and MS awareness has increased since then, a basic understanding of what MS really is still critically needed and equally important:

MS is an unpredictable, invisible, interfering, often disabling neurological disorder that has no cure and isn’t fatal or contagious. One that impacts millions of people, lasts a lifetime, and has immense costs associated with it for every citizen of the country.

It is amazing how many persons—even health professionals like nurses, GP’s—who don’t really understand what MS is. (Yes!—I actually gave a presentation about MS to an ER staff of fifty at a local hospital this summer.) There are many misconceptions about MS. (No!—20% end up in a wheelchair, not 100%.) And those of us dealing with this neurological disorder feel misunderstood, ignored, and forgotten. We feel this way because we know:

• On the outside so many of us look good unless we have some kind of walking aid to indicate otherwise. We’re not bleeding, we have good color in our faces, and we are not coughing or blowing our noses. When we look good, people automatically assume that we are good.

• Very often we are not good because so many of the symptoms are invisible. Pain, tingling, numbness, fatigue, dizziness, tightness, depression, blurry vision, balance, coordination—the list is endless. These symptoms interfere with everything we think, say or do. They are annoying; they hurt; they are frustrating; and they make us crabby. These symptoms are very disabling.

• Invisible symptoms are difficult to describe, and when we tell someone about them it’s hard for them to understand or empathize. Sometimes we use examples like “When I walk, it feels like I have a ten-pound weight on my ankle”, “It’s like when your arm falls asleep but never wakes up” or “My hands look normal, but I can’t button buttons.”

Jack “looked so good” dancing on the show. But then he talked about how his MS unpredictably acted up this past week, how it interfered with rehearsals, and what invisible symptoms he was experiencing (vision, fatigue, shooting pain in his limbs). With the intense stress with the finals in the competition, he is uncertain what will happen down the road with his health. It’s not like having a sprained ankle that will mend after it gets iced, wrapped, treated and rested.

We all know that to survive MS, a tremendous amount of support is necessary, and not only from family and friends. Physical, mental, emotional and financial support. Support for us individually due the difficulties and disabilities we live with; support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects; and support for other programs such as social security disability.

People not understanding what MS is all about hinders the support that we need. MSers can learn to effectively “manage” their illness, not just “battle” it.

There are so many of us out there walking, biking, blogging and volunteering in countless ways to overcome our obstacles caused by MS. But it just hasn’t been enough, fast enough, or unified enough. Increased education and advocacy led by Jack Osbourne—such as hosting an annual united event–would enhance our goals exponentially.

What do you think? Will you ask Jack Osbourne to stay in the forefront and be our MS spokesperson? Or is this just wishful thinking on my part?

www.DebbieMS.com

March is MS Awareness/Education Month

“Get Involved”

March 4, 2013

YOU are needed to get involved if: you have Multiple Sclerosis, someone you know has MS, are involved with MS associations, or have MS patients in your profession.

Why? Watch this video about my orange ribbon campaign http://bit.ly/YPI1Kq

How? It’s very simple. Read my MS Blog article that includes a quick summary of “What is MS” http://blog.debbiems.com/?p=113 

Orange is the color that stands for MS. You can simply wear an orange ribbon every day on your lapel/shirt, in your hair, on your purse…….or you can tie an orange ribbon on your car or put one on your house!

Want to do more? Organize something as a team. Watch this fun video to see what we did at the Arizona Chapter of the National MS Society http://bit.ly/YJxleg  .

Please start today!

www.DebbieMS.com

Multiple Sclerosis: What EVERYONE Needs to Know

“People just don’t know about it.”

October 22, 2012

There are two things many people say that irks those of us that have Multiple Sclerosis:

  1. “It’s that Jerry Lewis thing, isn’t it?”
  2. “But you look so good!”

No, it’s NOT that Jerry Lewis thing.  Jerry Lewis represents MD—Muscular Dystrophy.  MS stands for Multiple Sclerosis. Two extremely different disorders.  As we MSers talk to each other, we get discouraged that MD has had a national figure representing and fundraising for them.  We wish we had a national well-known person that could do the same thing for multiple sclerosis. 

So many people are not aware of MS.

Nor do they understand it.

If people really understood MS, they would know not to say “But you look so good!”  We would like to respond back “Thanks, but we sure don’t feel as good as we look!”  Why?  Because multiple sclerosis is largely an invisible disorder.  People automatically associate MS with walking problems and wheelchairs.

Being a disease of the central nervous system, potentially anything controlled by the CNS can be affected:  sensory functions, sight, cognitive/emotional functions—in addition to motor functions. These MS symptoms are not only invisible; they are extremely common and very disabling. Some examples include fatigue, weakness, bladder/bowel/sexual problems, numbness and tingling sensations, loss of sensation, balance/coordination issues, loss of vision, pain, dizziness, depression; the list is enormous.

Someone who understands MS would also know the detrimental effect any type of heat has on a MSer, whether it’s from the temperature, a fever, the time of day or a hot flash.  Or that staggered walking is not from too many drinks, but rather from a loss of balance/coordination due to damage in the brain.

Also, since many symptoms are invisible, many people do not realize that someone may have MS.  Or, because they don’t see a cane, brace, or other disability device, it is assumed that a MSer is okay.  It is hurtful to get dirty looks and remarks when a “normal-looking” person with MS gets out of the car in a handicapped space; their ability to walk before their legs start to wobble may be just ten minutes or 100 steps.

So, both awareness and understanding are needed.  To survive MS, we need a tremendous amount of support, not only from our friends and family, but from everybody.  Physical, mental, emotional and financial support.  Support for us individually due the difficulties and disabilities we live with; and support for the MS community as a whole financially–to fund research for curing MS, preventing MS, and restoring lost function due to its damaging effects.

I started an Orange Ribbon campaign recently with the Arizona Chapter of the National Multiple Sclerosis Society.  We MSers and some of our friends and families have just about finished 5,500 orange ribbon pins that represent multiple sclerosis (like the pink ones that stand for breast cancer).  Our goal is to have them ready for distribution at the Phoenix MS Walk on November 3rd.

We want to create more awareness, and when strangers ask us “what’s that orange ribbon for?” we will explain MS.  We will be advocators and educators.

So if you see someone wearing an orange ribbon on their lapel or shirt, it means either they have MS or someone that they know has MS.  We make them ourselves using orange satin floral ribbon and safety pins. 

During one of our ribbon-making sessions, a woman asked “What do you say when someone asks what MS is?  It is complicated and difficult to explain.”  Keeping it simple and uncomplicated, I would suggest this:

What is Multiple Sclerosis?

Multiple Sclerosis is disease of the central nervous system. Potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.  Many symptoms are invisible, so many people don’t know someone has MS. (Examples: fatigue, weakness, bladder problems, numbness/tingling, pain…)

It is not fatal, contagious, or congenital.  There is no cure; the cause is unknown.  It is generally progressive.  The majority of persons afflicted will become disabled during the decades of their lifetime with no way to fix the damage. 

Every case of MS is different, unpredictable, and very uncontrollable. It is unknown what course the disease will take, what will be affected, how quickly it will happen, and how much disability will occur.  

There are new drugs that are trying to slow the progression, and meds to help relieve symptoms and shorten relapses. Nothing is available yet to prevent MS or restore lost functions resulting from its damaging effects.  However, there are many things one can learn to manage living with it.

We at the Arizona Chapter of the NMSS are starting to hand out copies of this brief description of MS to people we meet that do not know about multiple sclerosis.  We are going to encourage other MS groups and organizations to do the same.

We need help, and we certainly need a cure.

www.DebbieMS.com

 

 

Orange Ribbon Campaign

“It stands for Multiple Sclerosis”

September 17, 2012

Both awareness and understanding of Multiple Sclerosis (MS) need to be increased EVERYWHERE.

How? You can help by being an educator and advocator simply by wearing an orange ribbon every day. Everywhere you go, people will see it. Some people will ask what it represents, and this is the opportunity to explain MS. You can ask questions like “Did you ever hear of it?”, “Do you know anyone that has MS?”, “Do you know what it is?” Others will begin to think “Huh—there is another orange ribbon…”

We can’t just sit back and wait for a celebrity or well-known person to mention it on TV. It doesn’t happen often enough and so many times MS is misconstrued. Or wait for an MS event like the Walk, or the Bike to come around before we wear our orange that primarily targets our friends and family that deal with MS already.

EVERYBODY dealing with MS should wear an orange ribbon EVERYDAY. This includes not only MSers and their friends and family, but also celebrities and people involved with MS such as MS Associations/MS clinics from the CEO/ Board members all the way down to their employees and volunteers. There is strength in numbers!!

People need to understand that because there is no cure for MS, and millions of persons deal with this chronic, often progressive, disabling neurological disorder throughout decades of a lifetime. It affects nearly every citizen of the country in one way or another.

When someone wears a pink ribbon, everyone knows what it stands for; breast cancer in recent years has received the support and recognition it deserves. We need this to happen for MS! Multiple Sclerosis needs a fundraiser on a national scale like what is done for muscular dystrophy, cancer, or victims of disaster in other countries.

And we can do this! Can you imagine the buzz if all of us wore our orange ribbons all the time? Can you imagine the awareness if celebrities or well-known people like Montel Williams, Sharon Osborn, Ann Romney or Michelle Obama wore orange ribbons and followed our lead? Can you imagine how there would be more support for research, insurance coverage for necessary medical programs, and social security disability? Yes, folks with MS often get declined for SS benefits the first, second and even the third time they apply for approval. 🙁

So, start today and put on your orange ribbon! (I made mine out of orange craft ribbon and a tie tack.) See my video http://youtu.be/TcEjyr2iMHY, share this post on all social media platforms, and spread the word to everyone you know to wear an orange ribbon.
If someone doesn’t know what MS is, hand them a copy of this explanation:

What is MS?

Multiple Sclerosis is an autoimmune, inflammatory disease of the central nervous system, which includes the brain, spinal cord and optic nerves. That means that potentially anything controlled by the CNS can be affected–such as motor function, sensory function, sight, or cognitive/emotional functions.

It is not fatal, contagious, or congenital. There is no cure; the cause is unknown. It is generally progressive. That means that because there is no cure, the majority of persons afflicted– millions worldwide–will become disabled during the decades of their lifetime with no way to fix the damage. Current estimates are that 20-25% will end up in a wheelchair.

From the day those of us received our diagnosis, we have no idea what course our disease will take. What will be affected, in what way or how rapidly will we be affected, and how disabled will we become? MS is unpredictable and uncontrollable; the losses never stop, the grieving process never ends.

There are new drugs that are trying to slow the progression, and meds to help with relieving symptoms and shortening relapses. But they all have side effects. Nothing is available yet to prevent MS or restore most function lost resulting from its damaging effects. However, there are many things one can do to manage it effectively.

It’s also on the front page on my website:

www.DebbieMS.com

Needed: MS Awareness and Understanding

“Wear that Orange Ribbon!”

August 29, 2012

Multiple Sclerosis doesn’t discriminate when it comes to who gets it. The playing field is equal.

It doesn’t matter if you are white, black, Asian, or Native American. Doesn’t matter if you are male or female, though females are 2-3 times more likely to have MS. Doesn’t matter which continent you live on, though it is more prevalent in northern latitudes. Doesn’t matter if you are young or old, though the onset is usually between the ages of twenty and fifty. And it doesn’t matter if you are rich or poor.

Even when the statistics reflect a higher percentage of occurrences in certain groups, there are still no exceptions. A person living in the tropics or a child can still develop MS.

When it comes to the types of symptoms one gets, the course of the disease, the duration of a relapse, or the amount of disability one experiences, MS doesn’t discriminate there either. No two people have the same identical case; no two people respond to treatments equally.

What is not equal is the amount of support an MSer can get depending on their financial situation. Now, before I go on, I want to make myself clear: MS as an illness is just as difficult and interfering to live with whether a person is rich or poor.

Now, having said that, here’s where inequality exists.

I am an “ordinary” person, like most persons with MS. Middle-to-low income. When my disability progressed, I had to quit my job. We were lucky to have enough money to pay bills every month, but there were no extras. Before my husband retired, I had to take care of our son, house, cooking, shopping, washing, paying bills, tax preparation, and so forth as best as I could. Now that he is retired, I am still lucky in that he helps me with all of these chores; however, we are on fixed income and each year the dollar gets squeezed more and more.

Now I don’t begrudge a person of wealthier means. They are still suffering too, and it is not anyone’s fault that they are richer than me. It’s just that I have the added stress and physical fatigue of having to do these things on my own. Of course I have the support of family and friends who lend a hand to do these things. And mental and emotional support available through MS organizations and peers.

But many times it is not enough to get through each day’s to-do list. Too often there is no safety net or easy lifeline when a job loss occurs or health insurance is lost.

I’m going to stick my neck out and say MS is harder on the “ordinary” person. The additional physical, mental, and emotional stress of an ordinary person has a negative effect on our MS both in the short and long term, probably causing our MS to be worse overall.

So, what’s my point? The point is that I want everyone to be educated about what MS is and does to an ordinary person. There are famous people in the spotlight who have MS and are creating awareness—like Montel Williams, Ann Romney, Jack Osborn. But their image doesn’t realistically project MS in the sense of the majority of us.

Many of us have been told “You look so good”, but these celebrities look too good. Again, through no fault of their own, the way media presents them causes misconceptions. So now there are two stereotypes at opposite ends of the spectrum: the dilapidated person in a wheelchair and the normal looking person so refreshed, energized and high-spirited.

The people in the middle, like the middle class, need to get into center stage for once. The “ordinary” person with MS needs a voice and attention on a national level. We have fallen through the cracks.

If someone wears a pink ribbon, everyone knows what that stands for. If it is an orange ribbon, most people wouldn’t have a clue what it stands for. The MS community needs celebrities with MS like Montel Williams to wear an orange ribbon everyday to increase awareness. The MS community also needs to wear an orange ribbon to build an identity on a daily basis. This includes the top brass of all MS Associations as well as their employees and volunteers.

But, in addition to awareness, I believe everyone needs a basic understanding of what MS really is:

MS is an unpredictable, invisible, interfering, often disabling neurological disorder that has no cure and isn’t fatal or contagious. One that impacts millions of people, lasts a lifetime, and has immense costs associated with it for every citizen in this country.

If that happens, more support for research, financial assistance, social security disability and other things will happen for multiple sclerosis.

Somehow, we ordinary people with MS who are also the majority have to band together and make this happen. Plus we need advocates at the national level as well.

So please put on your orange ribbon and spread the word!

www.DebbieMS.com