Monday, June 10, 2013

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Wednesday, June 5, 2013

When laughter isn’t funny

Jennifer LaRue Huget

Laughter and tears typically represent opposite ends of the emotional spectrum. But for some people – including about 10 percent of those with multiple sclerosis – episodes of involuntary laughter and/or crying are symptoms of a single emotional disorder known as pseudobulbar affect (PBA).

PBA is one of many mental disorders that can plague people with MS; it’s associated with other neurologic conditions such as stroke and dementia, too. It’s a tricky disorder to pin down. After all, everyone laughs and cries, right? But people with PBA find themselves laughing at things they don’t find funny and crying when they’re not at all sad. Such episodes can be very brief or last for a few minutes; they can occur only occasionally or many times per day. It’s believed that PBA results from damage to areas in the brain related to emotion.
 
However mild or severe a case of PBA may be, the condition can be terribly embarrassing and confusing for everyone involved. Raising awareness and spreading information about PBA and other emotional changes linked to MS could help spare that discomfort for thousands of people.

The National MS Society provides information and support for people whose MS has caused or been accompanied by mental disorders or emotional changes such as PBA. The Society joined other organizations across the nation in highlighting such disorders in May, which President Obama had designated as National Mental Health Awareness Month. You can read more about emotional changes that are symptoms of MS here, and about the Society’s involvement in National Mental Health Awareness Month here.

I intend to ask my neurologist about PBA at my next checkup, because now that I know about it, it seems to me I might actually suffer from the disorder myself. I tend to over-laugh, and I often cry when tears aren’t in order. To be sure, if I do indeed have PBA, mine doesn’t appear to be a severe case. But, still, I’d like to know, particularly as there are now several medications available to help control the condition. I’ll let you know what I learn.

Have you noticed emotional changes related to your MS? Have you consulted a physician about them?


Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

Friday, May 31, 2013

Don’t worry, be happy.

Jennifer LaRue Huget

Worry is the interest paid by those who borrow trouble. – George Washington
Don’t worry, be happy. – Bobby McFerrin


I had just turned 40 when I was diagnosed with multiple sclerosis. That was a dozen years ago. Looking back on the way I reacted to my diagnosis, I see a few things I would have done differently.

My diagnosis came a few months after I decided I needed a well-patient checkup upon turning 40. I wasn’t aware of any symptoms at that time; I just figured getting a checkup is what responsible grownups do when they arrive at that milestone age.

My regular primary-care doctor was so much in demand, I ended up not being able to schedule an appointment with her. Instead, I saw a young associate who had just joined the practice.

Everything went pretty well; the doctor found nothing amiss. I mentioned that sometimes a few of the fingers on my left hand felt numb, as though they had fallen asleep. She asked whether shaking my hand a few times made the numbness go away. I said, yeah, I guess so; I had never really noticed. I also mentioned that I was tired all the time. All the time. She pointed out that mothers with young kids (mine were 7 and 4 at the time) are generally tired all the time.

At the end of my checkup, I uttered what I now recognize as fateful words. “So, I have a clean bill of health?” She hedged, saying so far as she could tell everything looked fine.

I now understand that “clean bill of health” question was a major jinx. Why on earth did I ask? It was like tempting fate.

Six months later, on April Fool’s Day, my neurologist told me that it looked as though I had MS. (Clean bill of health, indeed.) My mind immediately moved into full-on worry mode, and my already overactive imagination leapt to a future in which I was in a wheelchair, unable to see or move my limbs.

If I had it to do over, I would:

  • Insist on getting that physical from my regular doctor, who has known me since I was a young adult and would, I feel certain, have figured things out more quickly than her associate did. Even if I it meant postponing my checkup for a few months, I think things would have gone more smoothly had I waited.
  • Never have asked whether my bill of health is clean! In fact, nowadays I am very careful to avoid jinxing things.

But the most important thing I would do differently if I had a do-over would be to not assume the worst about my prognosis. All that time spent worrying did me no good. And so far, thank goodness, none of what I worried about has happened – and I’ve learned to stop worrying that it will.


To paraphrase George Washington, worrying is a pointless waste of time. I wish I could take back the countless hours I spent worrying after I was diagnosed. I would do something really fun with them instead. These days, I’ve borrowed Bobby McFerrin’s sage advice as my personal motto: Don’t worry, be happy. I hope you will, too.


Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

Wednesday, May 29, 2013

Stay Positive. Be strong. Focus on your dreams.

Breea Renee


People in wheelchairs used to be almost invisible to me as I passed them on a busy day when all I had to think about was cheer practice, my boyfriend and my grades...until I became one of them in December, 2011.

I had no idea what multiple sclerosis was, and when I felt a little tingling in my hand the first thing I thought of was carpel tunnel from too much texting. The headaches I brushed off as stress because I was preparing for the ACT, applying to colleges, and my boyfriend had just moved across the country to begin his four years at Cornell. It never crossed my mind that there could be something attacking my brain.

When I woke up in the hospital, all I remembered was the clumsiness I had felt 10 days earlier. On December 8, 2011, I had driven to my mom’s work, trying so hard not to crash as I was losing all feeling in my left arm and leg and my sight in my left eye. After I stumbled into my mom’s work, we immediately left and drove to the emergency room. As she helped me out of the car and into a wheelchair, I remember feeling so scared. Then it all went black.

On the 18th, I told my mom I was ready to hear what my diagnosis was. She had been waiting for me to let her know when I was ready. We sat alone in my hospital room. It was the first time I had heard the words “multiple sclerosis.” I began to cry and scream, “Why me? Why is God doing this to me?” I felt like the universe was punishing me somehow. I had been through so much in my life already. A kidnapping, my dad leaving me and my mom for drugs, and now this. The sounds of the hospital surrounded me as I closed my eyes and held my mom, wondering what my life was going to become now. I could barely speak. I was blind in my left eye. Half my body was completely paralyzed. The questions began to start pounding inside my head: Will I ever be normal again? Am I going to continue to get worse until I become completely disabled? Will I ever be able to have children? Will I ever be able to realize my dreams? I opened my eyes and looked at my mom. She touched my face and whispered something we always say to each other in tough times, “We got this.”

I knew I could let MS take over my life and steal my dreams or I could be the one in control over my life – I could be positive, stay strong, and keep focusing on my dreams. I told my mom that feeling sorry for myself would not heal my lesions. Focusing on my dreams and staying strong would give me the strength I needed to live a normal life again. That is exactly what I did. Something inside of me kicked in. I felt unstoppable the second I chose to beat MS.

I laughed more than I cried. I felt proud of myself more than I pitied myself. I took action instead of acting defeated. I learned to walk again. I learned to talk and write and drive again. I learned to love and accept myself no matter how many hurdles I face each day with my diagnosis. I learned that people in wheelchairs are not invisible and that they all have a story – that they matter, and that they are just like anyone else. They are mothers, daughters, brothers, sisters, grandparents, teachers...human beings. 

Going to college has always been my dream. Today I took my last final of my freshman year in college. I relapsed my first semester and had to overcome some pretty big problems this year. But that is life. We all have struggles, choices to make, stuff to work through. How we get through it all is up to us. It’s up to us to choose how we look at it, how we feel about it, and what we choose to focus on. For me it is about focusing on my dreams. It’s about staying positive no matter what. It’s about staying strong through it all, because I am too young to give up. I have a big life ahead of me and MS isn’t going to stop me from living it.


*To celebrate World MS Day, explore stories from around the world and share your motto at www.worldmsday.org.

 

Breea Renee is a 19 year old college student at NAU. She was diagnosed with MS when she was 18, a high school senior, and competitive cheerleader. Since her diagnosis she has become an advocate for living a resilient life no matter what, and educates others about MS through her MS Awareness Project on Youtube and her Facebook page, Help Breea Beat MS. She is a speaker and currently writing a book with her mom, Michelle Renee, about coping with MS and living a resilient life.  

Tuesday, May 28, 2013

Winning

Michael Wentink    
Blogger, A Road Less Traveled...  


Be a teacher. Or quarterback of the Redskins. Maybe run my own pizzeria.

Create a television channel devoted to “The Price Is Right.” Eat Oreo cookies whenever I want. Get married to a model, start a family together and live happily ever after.

Every adolescent boy has a different answer to the age-old question, “What do you want to do with your life?”

But boys grow into men and some of their dreams, although never forgotten, adjust to new realities. I might impress my 6-year-old son with how far I can throw a football, but NFL material I am not (and never was). I’m not really a fan of Oreo cookies anymore and the idea of running my own pizza joint lost most of its luster many years ago.

As for my hopes for love and marriage, 12 years ago I won the lottery marrying “up” to my amazing wife and we have been blessed with two wonderful children. With our kiddos comes ample opportunity for teaching moments and the family we’ve created is proof that dreams can come true.

DID NOT SEE THAT COMING

Of all the visions I had of my future, being diagnosed with multiple sclerosis at The Mayo Clinic on May 13, 2008, seemed more remote of a possibility than replacing Bob Barker as the new host of “The Price Is Right.” Getting sick wasn’t supposed to happen.

That May, my son took his first steps as I was thousands of miles away having a spinal tap to determine if the lesions on my brain and spine were caused by something called MS. As my wife and I waited for the results, I wondered, how did I get here?

I was a freshly minted MBA and after years of hard work in my career, the payoff was a recent upward advancement into management. I felt proud of my accomplishments and was relishing the life I had always dreamed of, but then I was pinched awake by some of the greatest medical minds in Rochester, Minnesota, and they were telling me I had MS.

BOX IT UP

We all have frustrations, personal or professional. One of my cardinal rules when I worked was to always leave whatever career problems I faced at the office I refused to let my work predicaments seep into my life and penetrate the happiness I have with my wife, children, family and friends. In my mind, that meant it was winning. Keep it in the career box and out of my personal box and I win.

The progression of my disease has changed the road I was on, but that doesn’t mean it is winning – my pride will never let it. MS is the uninvited guest that never leaves, breaks your washing machine and/or vomits on your carpet. MS is the new, temperamental boss at work whose only quality appears to be driving people to leave the company. MS is the shameless telemarketer who ruins your night when he wakes up your sick child with his uninvited call.

FOREVER A DREAMER

But the actual toll from MS is more serious than the annoyance of a late night phone call or the distress from enduring a bad boss. It impacts my vision, mind, body, mobility and more – but not my dreams, my answers to what I want to do with my life. As we get older, we are asked less and less about those dreams. Why? My visions are richer now: growing old with my wife, guiding and then watching in awe as our children become adults, spending quality time with family and friends and, yes, celebrating another Super Bowl victory for the Redskins.

MS will provide many obstacles along the way and when it does, I will seek to contain its damage.  To be alive is to dream and that maxim lights the path down my road of being a husband and father with MS.


In 2008, Michael Wentink was diagnosed with multiple sclerosis. At 31, he was a new father, a recent MBA graduate and a Director at a Fortune 500 company. MS altered this path and after an early retirement, Michael is now navigating life on a road less traveled. A native of Northern Virginia, Michael currently resides in San Antonio, Texas with his wife and two young children. Read about his journey with multiple sclerosis at mjwentink.com and follow him on Twitter.