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Putting a Rest to MS Myths

myth

Content provided by: Black Health Matters

Medical discoveries happen so fast that it’s easy to understand how some people don’t have time to stay on top of the latest news and might still believe outdated myths and misconceptions about multiple sclerosis. We debunk five of the most common MS myths.

Myth 1: People with multiple sclerosis shouldn’t exercise.

There was a time when everyone—experts and people with MS alike—believed physical activity would make the disease worse. Doctors advised against an active lifestyle and families kept their loved ones sheltered indoors. Now we know better. In fact, research shows it’s actually better for you to keep it moving. Being active may even ease some symptoms of MS and help you stay mobile longer than if you’re largely sedentary. Choose activities you enjoy and do them most days of the week.

Myth 2: Women with MS can’t (or shouldn’t) get pregnant.

Three times more women develop MS than men, most often during their childbearing years. Imagine how unfair it would be to say to these women that they should pack up their ovaries and go home. Experts say women with multiple sclerosis can get pregnant and might even find some of their MS symptoms disappear during pregnancy. Singer Tamia says this is what she experienced while she was pregnant. If you want to have a baby, but you’ve been diagnosed with MS, know this: There is no research that links a mom’s MS with a negative outcome for the baby. Just talk with your doctor about your medications and the possibility of a relapse within three months after childbirth.

Myth 3: Multiple sclerosis is contagious.

Some people are under the misconception that MS is catching, like that stomach virus that laid your entire family low last Thanksgiving. But scientists have tried—and failed—to transmit the disease in the lab to research animals, so the likelihood of it spreading in your home or community is pretty remote.

Myth 4: Multiple sclerosis doesn’t cause pain.

Though there are still some health-care providers who don’t include pain on the list of MS symptoms, people who have it will tell you different. And if you need the science to back up the folks who should know, here it is: Research published a year ago in the Journal of Neurology found that people with multiple sclerosis can suffer with long-term chronic pain.

Myth 5: Multiple sclerosis always causes permanent disability.

It’s difficult to predict the degree of disability MS will cause for any one person. Today’s medications slow disease progression for many sufferers. Add a variety of mobility aids and physical therapy to your arsenal, and the words “permanent disability” might have to be banned from your vocabulary. You may learn what many others with this disease know: Sometimes you’ll might need your walker or cane, and some days you can dance circles around your non-MS friends.

Content provided by: Black Health Matters

17

When My Will Is Weak

helping people

It does not matter how slow you go so long as you do not stop. –Confucius

MS is like a thief in the night, stealing the fortitude of its victims. It especially takes advantage of those who have given up or can’t muster the strength to fight anymore.

For me, everyday is a battle with MS. My struggle is not only a movement in opposition to a debilitating disease but also a fight for a fulfilling quality of life. I use every available tool and possible weapon in my personal war against MS. Medicine, food, exercise, and spiritual guidance all play an important role. Most of the time this arsenal is very effective and shields my body from the impinging effects of the disease. But every now and then I am sucker punched with a new symptom that knocks me for a loop. When that happens I try to gather my thoughts and seek counsel from my life advisors, which include family, friends, doctors and my spouse. When my decision-making skills are weakened by sudden medicinal changes these people are able to recognize that I am at my most vulnerable and provide much needed support.

New symptoms steer me towards worse case scenarios and distract me from solutions. I become despondent, believing that my latest flare-up will take over my life. Whenever I am in this situation, MS becomes my personal devil. It spits fire at my soul, burning away pieces of my spirit. First, my confidence and ambitions are damaged. Then my faith and hope are tested until my essence is destroyed to the point that my former self is no longer living. I become a different person who struggles to establish a new purpose. Flashbacks to the individual I used to be haunts my contemporary identity and grow to be the foundation of depression. Malevolent thoughts rage an internal battle that deliberately attempts to control my existence. Suddenly my inward struggles become just as stark as the outward ones.

Every outing is a circus where I am the sideshow freak on display for everyone’s amusement. My life reflects a car wreck that is highlighted by twisted metal and broken parts. As people pass they look and discretely stare, hoping to get a glimpse of my damaged remains. My mind goes a thousand miles an hour, with only the most awful circumstances passing through every few minutes. My entire being is pushed to the edge where I start to conceive alternatives to continuing in my living hell.

At this point I am usually at the end of my rope. Without intervention I am apt to make horrible and regrettable decisions. I have been known to change medicines, begin fad diets and try to isolate myself from the outside world. My support group has been my savior in this situation by not allowing me to become out of touch. I am blessed to have such a compassionate collection of people in my life. They don’t pity me they help me. They stand strong for me when I cannot. They fight for me when my will is weak.

Originally appeared on MultipleSclerosis.net

27

Mourn The Loss

Unhappy

While grief is fresh, every attempt to divert only irritates. You must wait till it be digested, and then amusement will dissipate the remains of it. ~Samuel Johnson

It’s a good thing that my caregiver/husband and I get along, because I never would’ve imagined depending on him so much.

In the beginning of this newfound dependency on others, I was not a happy camper. I probably was defensive to the very people that were trying to help me. It’s just that we all have this picture of what life should look like and my reality just was not matching up.

Nowadays it seems I need help with just about everything. And to make matters worse or more complicated for all involved, I don’t need that help all the time. This confuses the person, normally my husband, as to when to help and when not to help.

Does that make sense?

I know he is only concerned about me. In the meantime, I’m so busy trying to hang on to my last bit of independence by continuing to do what I can on my own. I think this is a good thing.

I also have to accept there are things I can no longer do safely by myself. For instance, I need help getting on and off the toilet. It’s not every time I go, mostly just during the night or early in the morning. The other day, I had a nasty fall in the bathroom and it scared the life right out of me. Mind you my bathroom was newly made handicapped accessible. So, it seems no matter what, falls can happen.

I need help with transferring from one chair to another. That is, transfers from my scooter or wheelchair to the dining room table or to my favorite reading chair. Something I used to do with no problem.

I’ll be honest with you. It’s hard. To make it easier I quickly mourn the loss then I move on. The thing is, if I persist on focusing on what I’ve lost here, I will lose and MS will win once again. And it has taken away so much from me already.

I try to remember that our job as MS fighters is to make the most out of what we can do, no matter how small.

4

It’s Not Complicated

Content provided by: Jennifer Digmann of Dan and Jennifer Digmann

We are a month into the New Year and I’m curious: How are your resolutions for 2014 holding up? Are you still sticking to that new diet? Or are you hitting the gym as much as you had planned? What about those nasty cigarettes? Still not smoking, right?

Well, if you’ve kept your resolution, CONGRATULATIONS! Way to go!! But if you haven’t been able to stick to them, please stop beating yourself up. According to the New York Times, four out of five people who make New Year’s resolutions will eventually break them. In fact, a third won’t even make it to the end of January. Does that make you feel better? You are not alone.

By chance did you see this AT&T television commercial? Cute ad and cute kid, don’t you think? Certainly I’m not advocating skipping resolutions altogether in favor of eating jellybeans, but I think the little guy makes a good point.

What if instead of making a New Year’s resolution, we all decided to go the way of a New Year’s revolution?

Perhaps your revolution would be to focus on your whole self more; you could pamper yourself a little. Or focus on your well-being. Instead of dreading those doctor’s appointments, you could celebrate how you are better managing your health.

And speaking of your health, what if you didn’t let Multiple Sclerosis steal one more moment of joy and happiness from your life.

This is exactly what a revolution should be, right? After all, dictionary.com defines a revolution as a sudden, complete or marked change. So instead of giving this disease anymore of yourself, you take back your control. What a revolution, indeed!

What about you? How are you going to start your MS revolution?

Content provided by: Jennifer Digmann of Dan and Jennifer Digmann

40

Square Peg

square peg round

“I’m just a square living in a round world.” – Philip Phillips

One of the things I hate most about being sick is that I feel as if society has forgotten about me. It’s just so hard to fit in when I can’t drive, I get tired so fast, and going to the restroom is an adventure. So since I just can’t do normal things, it’s as if I’ve just disappeared. The old Nicole is missing without a trace and the new Nicole is so misunderstood that most people shy away from spending time with her.

So instead of just sitting on the sidelines waiting to be accepted I have to remember that there are a group of people who I always have a great time interacting with. They are those who are on a similar path as me. My MS peers.

At a recent MS Blogger summit I attended, I felt a certain comradely with fellow attendees. At the heart of multiple sclerosis lies loneliness. Sometimes, no one is there to dry your tears. No one you tell understands your difficulties. No one in your life can comprehend the emotional and physical pain you can experience every minute of the day.

But this weekend, I had a group of people who did understand. So in consequence, I welcomed the chance to be surrounded by folks like me. It doesn’t happen too often. So during the event at every meeting and every bathroom break that forced interaction was welcomed. And when I talked, I felt heard. This made my insides smile. The event reminded me how important it is to get out and mingle with peers.

So for one weekend, I was happy the entire time. Maybe because for the first time in a long time for me, the square pegs out numbered the round holes.

34

Half-Full

glass half full

Love them or hate them, pharmaceutical drug companies are here to stay. The odds are that if a cure is ever found, it will be discovered by a drug company.

For that reason, I decided to take an offer to attend the first MS Patient Blogger Advisory Board meeting hosted by Novartis Pharmaceuticals Corporation. I was surprised they asked me to attend because I no longer take their MS drug Gilenya, but I was very honored they did. They paid for me to go to Morristown, New Jersey and be a part of the advisory board. Don’t worry, I’m not going to try and sell you on the benefits of using Novartis products. As a matter of fact, to my surprise Novartis really didn’t talk too much about their company’s products. The focal point of the event was the accuracy of their marketing in meeting the evolving needs of MS patients.

Along with a group of eight other MS bloggers, I was asked for input on communication needs within the MS online community and feedback on some of Novartis’ social media channels. It was interesting to find out how drug companies work as far as marketing and the government guidelines they have to follow.

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As far as the trip itself, it turned out pretty good considering that traveling can be a challenge for me. My husband, Tommy, and I went from 55 degree New Orleans to 7 degree Morristown, New Jersey. Yikes! We flew United Airlines, so that meant I had to use an aisle chair to board the airplane. It wasn’t so bad this time. I think that’s because I know what to expect now. Once we got to New Jersey, I was nervous because there was snow everywhere, which was a problem because I was using my scooter and it isn’t waterproof. So I was happy to find out that all the events would be happening inside our hotel and we would not have to venture out into the snow that much. The hotel was also connected to a mall so that made me really happy.

The best thing about the event was that I got a chance to give my input to a company that is searching to find a cure for MS. The only way to change what we think is wrong with pharmaceutical companies is to engage with them and if they initiate the conversation that means they may actually listen to the suggestions. I believe pharmaceutical companies engaging with patients is a positive step. Yes, it’s about profits but by exchanging dialogue with them, maybe we can make it more than that. So when it comes to pharmaceutical drug companies I will look at the glass as half full and not just consider them as the big bad wolf.

I also got a chance to put faces to the names of bloggers I have been reading for years. It was an honor to be amongst peers that not only understand but are also going through the same things as myself.

Check out my fellow attendees and their blogs:

·Dave Bexfield – Dave’s Active MSers Blog
·Jamia Crockett – My MS Heels…My MS Heals
·Jeri Burtchell – Partners In Research
·Joan Wheeler – A Short In The Cord
·Jodi Bean – Jodi Bean’s Blog
·Jon Chandonnet – Jon Chandonnet
·Lisa Emrich - Brass and Ivory and Carnival of MS Bloggers
·Matt Allen – Matt’s Multiple Sclerosis

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)

Nicole and Dave Bexfield (Dave's Active MSers Blog)

Nicole and Dave Bexfield (Dave’s Active MSers Blog)

49

Truth Hurts

truthU

“Three things cannot be long hidden: the sun, the moon and the truth.”

As my legs and now arms continue to betray me, I can honestly say my greatest fear in life is becoming uncommunicative, bedridden and losing my sense of purpose and significance in life.

Nothing new has happened, this is just the way I’ve felt for a long time and have told very few. Why? Because most people just won’t understand. It’s just that life can be unknown, real and very scary for any person living with a chronic illness.

In my case, I haven’t significantly responded to any therapy with the exception of chemotherapy. So right now, I’m feeling a bit bitter and put out. I need to get it out of my mind that my MS is not a common cold. I have an incurable chronic progressive and often disabling disease.

In truth, I put this out there so I can essentially release this fear. I do that so it will not inhibit me from doing what needs to be done in this present moment. I’ve watched people become mentally engulfed by their illness. Their happiest memories are trapped in their past and they feel that their future is so unpredictable that it’s difficult to see any light. That was me. I felt like I couldn’t breathe without inhaling fear.

But now I face my fears with the truth. I understand my circumstance and I don’t worry about the things I can’t control. When I’m in my darkest hour I try to look for the light. And that light is here. It’s right now. It’s this present moment.

I know that I can control what is happening at this moment. It is my choice. So I choose to…be happy.

French Quarter