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, 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:

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!