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.

Friday, May 24, 2013

Headed the wrong way down Memory Lane?

Jennifer LaRue Huget

Lately I find myself wondering whether my multiple sclerosis has affected my … uh, what’s the word I’m searching for? Memory! That’s it. 

As I advance toward my mid-50s, I have plenty of opportunity to question whether my memory lapses are a normal sign of aging or a nefarious symptom of MS. I had extra time to ponder this situation last week while I was visiting my 87-year-old mother.

Ma is, knock on wood, in terrific physical and mental condition. She still lives in the house I grew up in and maintains the place, and her affairs, on her own. But she expressed frustration about the number of times she couldn’t remember what she had been about to tell me. She had some trouble keeping track of her house keys, and she spent the better part of a day trying to remember a certain word that figured in an anecdote from her childhood that she was trying to share with me.

It all seemed perfectly normal to me, and eventually she remembered everything she wanted to tell me and found her keys. But I understood her concern. It’s worrisome to think about losing your grip on your memory and your memories, and any sign that your grip is slipping can be scary.

In the years since I was diagnosed, I have often questioned whether my memory glitches are MS-related. My husband, who has known me since I was a teenager, is reassuring, in his own way. He reminds me I’ve always had a terrible memory, so I shouldn’t worry about it.

I think he’s right. After all, I’ve always kept a journal and taken lots of photos because I have always known I can’t count on my brain to preserve my memories.

But every so often I worry that MS damage has reduced my ability to remember things. And worrying certainly isn’t going to improve my memory. If things get much worse, of course, I’ll check with my doctor. But for now I think my inability to remember, say, the name of my second-grade teacher, or the current location of my eyeglasses, is probably just a normal part of growing older.

Because, really, who cares what my second-grade teacher’s name was?  And as for my glasses, after an exhaustive search of the house, I generally find them – perched right on top of my head.

P.S.: My teacher’s name just popped into my head! She was Mrs. Shirley, and she had very fair skin, and one day she came to school with a stain of iodine on her finger to disinfect a cut. Take that, MS brain!


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 22, 2013

Identification

Laurie Clements Lambeth

Shortly after my initial diagnosis at 17, I received two cards: a glossy membership to the National Multiple Sclerosis Society with my name printed on it, and a yellow card with no gloss, no lamination, printed on card stock one step above construction paper. Temporary, like some insurance cards, but for a lifelong illness. In small black letters it proclaimed that the bearer of the card had multiple sclerosis, a disease which can manifest itself in a number of forms: slurred speech, unsteady balance, erratic gait when walking, and slowed motor coordination. These were not to be confused, the card instructed, with intoxication. There was a space on the card to fill in my name, and another for the doctor's signature. His office had typed his name, floating loose in yellow space. I was to carry the card with me at all times from that day forward.

This was exactly one year and one month after I got another form of identification, my first driver's license at 16. I had taken my driving test two weeks after breaking my nose in a horse show. My horse stopped in front of a jump, and I, leaning too far forward, soared over, landing on my face. My nose was still swollen when I got the driver’s license, and I had taken effort to artfully apply purple eye shadow all around my two black eyes to make the bruises appear as intentional as possible. By the time I received my yellow MS card, I had already been carrying a memento of physical injury as identification. I was “experienced.”

Over time, the yellow card's edges softened, the corners curled and frayed. I kept it in a clear plastic sleeve behind my prom picture, inside an accordion-shaped card-and-photo holder in my wallet. The plastic sleeve took to edging out of my wallet ever so subtly, leaning, falling, and then one day it was gone—poof.

It wasn't until years after the broken nose, years after I relinquished the California driver’s license in Texas, years after the MS diagnosis, and years after I lost the card, that the particular symptoms it named, symptoms affecting my speech, gait and balance, in particular—would enter my physical experience. The flare-ups came, went, and left lasting traces—not all at once, mind you, but erratically over time: eruptions, like earthquakes and their aftershocks. Sometimes they would flare a few weeks after an initial, two-month eruption, just to remind me I had MS, and sometimes they wouldn't return for years. Their epicenters often changed. The central nervous system has many fault lines. 

There have been times I’ve wished for that yellow card again. I never know when I might appear drunk. No card to hand over, it has become a worry of mine, as it most likely is for many people with MS, that I might be cited for public intoxication and absolutely fail the heel-toe walking exam. I don’t drink much for a variety of reasons. Alcohol has intensified or brought back certain sensations like that shot of lightning running down from my head to my extremities when tilting my neck forward: “L’hermitte’s Sign.” Whenever I felt that jolt zip through me after a long absence, I knew to put my wine glass down. That unsteady gait and lightheaded feeling, already features young drinkers strive for, just blur the lines between pleasure and symptom too much. When I nearly fall climbing into the hairdresser’s chair, why add to the sensation? When I stagger to catch my balance and someone says, “Whoa! You okay there?” I imagine they are thinking I’ve had a fun evening. Or that I have a problem. Which I do have, just not the problem they’re thinking of. 
 
Growing up in California, I never lived through a particularly violent earthquake, although I have lived through many and prefer their randomness to the looming doom of hurricanes and tornadoes. The closer the epicenter, the more jolting an earthquake could feel. Most of the earthquakes I experienced were usually far enough away to soften to ripples. I actually enjoyed them. Water splashed out of pools; the bed swirled. During one legendary earthquake when I was a baby, my mother says I stood up in my crib, held the railing, laughed and bounced. Like a ride at Disneyland, perhaps, but far more damaging. And like MS, the damage is sometimes easy to ignore, subterranean.
 
The fault lines of my brain and spine swell and scar, and I happily bounce along. What else could I do? Hide beneath a table all my life? Brace myself in a doorway? It would be a lie to say that MS has not shaped me, become part of me. Sometimes I wonder at what point I first acquired the disease. Was my yellow card waiting for me all along, softening through childhood? My identity is as tied to MS as it is to earthquakes, the Pacific ocean, my broken nose, my knocked-out teeth. Why worry about a little staggering?  
 
 
Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com

Monday, May 20, 2013

Planning for the Long Term: Taking Action Today


Michael Ogg

I was diagnosed with primary-progressive multiple sclerosis in 1997. "Progressive" means that the disease, well, progresses. I am now functionally quadriplegic, having only partial use of one arm. To write this I am using speech-to-text software on my iPad. I also use my iPad to control the lights, heat, music and door locks in my house. I have been a wheelchair user for 12 years. I am unable to perform any of the activities of daily living (for instance washing, dressing, toileting, eating, etc.) and am completely dependent on home aides to help me with everything. Yet I continue to live alone in my own house.

The home aide who arrives first thing in the morning gets me out of bed using the ceiling-mounted overhead lift. She (most but not all home aides are female) then showers me, dresses me, makes and feeds me breakfast. Other aides give me lunch and dinner, wash my clothes, do other errands for me and put me into bed at night. Without the daily help from my home aides, I would have to live in an institution.

I was fortunate that through my last employer I had the option to purchase long-term care (LTC) insurance, but like most LTC policies, mine has a lifetime dollar cap. Mine will run out in less than four years. I am 58 years old. Through Social Security Disability Insurance (SSDI) I have been on Medicare for some time – but Medicare does not pay for home aides. For over two years I've been trying to get onto Medicaid which has a very low income eligibility requirement, but covers many aspects of long-term care including home aides. I have now set up a Special Needs Trust (SNT) which is a way of sheltering assets and income for Medicaid purposes. There is not space to go into the details here, but essentially an SNT is a means of deferring bankruptcy until death instead of spending down first in order to receive Medicaid. But it's complicated and there are many restrictions and limitations.

It seems that many of the things we’re told to do to be responsible citizens work against us when trying to get Medicaid. In fact, the obstacles to living in one’s own home in the community, which is the stated aim of the Supreme Court decision Olmstead v. LC and most modern policies, are so great that it becomes financially impossible to live in a community – and a nursing home is the only remaining option. If I don’t qualify for Medicaid soon, I will use up all the remaining funds in my LTC policy. I will then have to use the remainder of my savings for long-term care, and then when I run out of money, I will qualify for Medicaid. This is the so-called “Medicaid spend down.” To qualify for Medicaid will make supporting my daughters (ages 16 and 13) very difficult; Medicaid will have a lien on my SNT, and if I am not bankrupt before I die, the lien must repay what was spent on me, leaving no estate for my daughters to inherit.

For people with progressive MS, long-term services and supports (LTSS) may be needed for decades after diagnosis. Even for those with the option and ability to afford private LTC insurance, there is no private insurance that I am aware of that would provide the necessary level of support. The costs of LTSS are so high that very few people can afford it on their own. This leaves people like me with the following choices: bankruptcy, nursing home, or both. We as a country simply have to do better.

Though only an estimated one-fourth of people with MS will need LTSS, many people with primary-progressive MS like me will need it sooner – rather than later – and for a longer period of time. The need for more affordable, flexible LTSS options also impacts millions of other families living with chronic or disabling diseases, not to mention the fact we have an aging society that will require more and more LTSS. Raise your voice as an MS activist and sign this online petition to remind Congress to address LTSS and create more realistic long-term care options. I’m proud to say I’ve already signed.


A former professor and researcher in physics and software engineering at major U.S. and Canadian universities, employee at Bell Labs and Chief Technology Officer at a New Jersey start-up organization, Dr. Michael Ogg was diagnosed with multiple sclerosis in 1997. Since then, he’s become an MS activist for improved accessibility and ADA compliance, active volunteer support group leader, speaker at high-profile special events, and published author. His essay entitled “Running Out of Time, Money and Independence?” appeared in the journal Health Affairs in January of 2011 and received the 2011 Best of Award in Family Caregiving by the Family Caregiver Alliance; the essay described his life at home with a severe disability and was also covered by The New York Times. His “Hard Lessons from a Long Hospital Stay” essay – focused on issues affecting people with physical disabilities during hospitalization – was published in the April 2012 edition of the American Journal of Nursing.  


Tuesday, May 14, 2013

Enough Already.

Katie Jennings

We often use the phrase “self-conscious” to describe someone who’s very aware of what other people think. A teenager in her first high heels, for example. She’s walking awkwardly, heels clacking, and looking around to see who’s noticing, thinking of what her friends (or that boy) might think, or wondering who sees her as she walks down the hall. She’s self-conscious, right? (I know, because I was her.)

Since being diagnosed with multiple sclerosis in December, I’ve become self-conscious in a much more literal way. At all times, day and night, I’m acutely, almost excruciatingly, aware of my own body. I’m overly conscious of myself.

Every ache, every tight muscle, every missed step: now subject to careful review. Is that a tingle, or did I just sit in one position for too long? Does my leg hurt because I’m out of shape, or because I have MS? Am I tired because I’ve been chasing my son around the yard all day, or because I have MS?

And then when I have a real, recognizable symptom, I obsess even more. What does it mean? Will it pass or is it permanent? What will be the next logical step in my progression? (As if there’s any logic in any of this.)

Frankly, I’m getting on my own nerves. I don’t want to be spending all my time thinking about myself. I definitely don’t want to spend all my time thinking about this disease. I have a progressive form of MS, so if I start down this road now, it’s liable to take over my whole life. Which is precisely what I’m trying to avoid.

I’m committed to doing as much as I can to stay healthy and live the way I want to: meds, diet, exercise. Whatever it takes. But I’m hoping that as the months (and years) unfold, I’ll learn to somehow quiet the myriad voices clamoring in my head about multiple sclerosis and just live.

It’s in my brain obviously, but I’d like a little bit less of it in my head.


Katie Jennings keeps busy juggling a son, a husband, a job, an old house, a bossy cat and unpredictable Vermont weather. She was diagnosed with progressive relapsing MS in December 2012. She blogs about all of it here: http://steadyshegoes.com.

Sunday, May 12, 2013

Moms Oppose MS: Educating, Donating, Working Together to Overcome it

Jody Devere

Every mom wants to do the best she can to care for her kids and keep them safe from harm: We make sure our cars are equipped with proper safety equipment like anti-lock brakes and strap them lovingly into child seats and seatbelts to protect them in case of an accident. We make sure they are wearing a helmet when learning to ride a bike. At home, we hide the dangerous chemicals and put away the knives.

But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.
Case in point: Multiple Sclerosis 
My son Joe, now 40, has been fighting MS since 2002 and has a spinal cord injury due to a car accident in 2005 related to his MS. Joe currently has primary-progressive MS. Joe’s biggest challenges are staying out of the hospital and free from infections -- and learning to use his new power wheelchair.

When my daughter Marie, age 37 and a mother of two children ages six
and eight, was recently diagnosed with relapsing-remitting MS, I felt like lightning struck in same place twice. While the illness causes numbness in her hands and feet, flu symptoms, and fatigue from weekly shots, being a working mom with MS is a challenge in itself.

I have come to learn that the challenges of MS affect the entire family. I'm sometimes overwhelmed by the gravity of the disease and the horrible impact it's having on my children, in fact, on our entire family.
Being a caregiver to a person with MS can be a challenge.
Joe was hospitalized from December 2012 to February 2013 due to a major exacerbation that caused many complications and took away much of his independent living skills. Since then, I have joined Joe's wife Rosanna to become part of Joe's 24/7 caregiver team, and have even learned to be a pureed diet gourmet cook for him.

Rosanna recently won the "Caregiver of the Month" honor from Healthy Women. She is an avid snow boarder and together she and Joe have formed the non-profit foundation Threus.org to help others with spinal cord diseases go skiing, surfing, kayaking, and even white water rafting. Prior to his recent exacerbation, Joe was an enthusiastic paraplegic skier and skydiver, and as soon as he is stable again, the two are planning to scuba dive together. It's an important goal to Joe, who values and wants his independence back.
Educating, Donating, Working Together to Overcome Multiple Sclerosis
I would trade places with my children in a heartbeat. However since that's not possible I will fight to find every resource to help them and help fund research to find better treatments and hopefully one day a cure!

During the month of May, we at AskPatty are partnering with the National MS Society to raise awareness of the disease with our MOMS (Moms Oppose Multiple Sclerosis) social media campaign.

On World MS Day (Wednesday, May 29, 2013), AskPatty will be hosting a special Twitter Party at 5 pm (PDT), where we will have an assortment of guests on hand to educate participants about the illness, and to discuss ways we can work together to overcome MS. We have also created an official MOMS donation page where supporters can contribute directly to the Society to help research prevention, treatments, and a cure.

Please join us in our MOMS social awareness campaign as we discuss Educating, Donating, Working Together to Overcome Multiple Sclerosis!



Jody DeVere is the CEO of AskPatty.com, Inc,  a website, blog, and marketing-to-women agency that provides consumer automotive education, as well as training, ongoing marketing support, information, and certifications to car dealers, independent service locations, tire dealers, collision centers, and other automotive retailers. She is also the mother of two adult children living with MS.
 
 
 
 

Thursday, May 9, 2013

The looming neurologist shortage

Jennifer LaRue Huget

I have on occasion thought about moving away from Connecticut, where I have lived for 30 years, and returning to my home state, Maryland.

But whenever I start reviewing all the things I love about Maryland, I remember all the things – the people, places and experiences – I would miss if I left my current home.

Near the top of that long list is the set of doctors I have access to here, the ones who cared for me from my young adulthood to my middle age, seen me through the birth of my children, my gallbladder surgery – and my diagnosis with multiple sclerosis. And while I feel grateful to all of my physicians, I am most attached to my wonderful neurologist. He handled the process of diagnosing me with calm, empathy and good humor, which might sound strange to some but which has helped me maintain perspective and my own good cheer through the past 12 years. He helped me find the right medication for me and he’s offered good counsel at every checkup.

So I find the news recently reported in the journal Neurology chilling: A study published there on April 17 finds that the U.S. will face a shortage of neurologists by 2025. Specifically, the study, led by Thomas R. Vidic, MD, of the Elkhart Clinic in Elkhart, Ind., projects that the demand for neurologists will grow quite a bit faster than supply: While in 2012 there were about 16,366 neurologists practicing in the U.S., there was demand for about 18,180. By 2025, there’ll be need for 21,440 neurologists, the study projects, but only 18,060 neurologists will be practicing at that time.

That will mean longer wait times to see a neurologist, the authors note, and will make it more difficult for some patients to connect with a neurologist in the first place.

That’s all bad news, given that, as the study points out, 1 in 6 people in the U.S. currently have conditions warranting a neurologist’s care, and that number is expected to grow as baby boomers age and conditions such as Alzheimer’s disease, Parkinson’s disease, and MS continue to become more prevalent. A big part of the problem, the study suggests, is that Medicare doesn’t reimburse neurology care at the same rate it pays for other healthcare services, making neurology a less lucrative, and therefore likely less attractive, field for medical school students to pursue.

The National MS Society is concerned about the growing shortage of neurologists, too—especially those who are specifically trained and qualified to care for people with MS. The Society worked with a research firm to conduct a study about why residents and young physicians choose to specialize in MS as a career choice (and why not).  They have also held discussions with MS researchers and clinicians to get their ideas about how to attract more talent to the field – and are in the process of developing new strategies and activities to address the problem, including advocacy, providing more MS fellowships and reaching out to medical schools.

A physicians’ group also recently presented the findings of the Neurology study on Capitol Hill to draw attention to the impending neurologist shortfall and ask Congress to protect patients’ access to these important medical specialists. Here’s more on the study and likely impacts in the MS world from Everyday Health.

Are you in the care of a neurologist? How do you think that care (or lack thereof) may have affected your experience with MS?

You can Sign up to receive advocacy alerts from the Society in order to add your voice to this conversation when the opportunity for action arises.

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.

Monday, May 6, 2013

I’m An MS Activist

Mike Burns

You might call my wife, Kristi, and I a “Hollywood” power couple. I spent six years in the 80s (of my 20+ years in the industry) working on one of the most popular sitcoms of all time, “The Cosby Show.” Kristi is a professional voice-over artist, best known as “the voice of time” on the Food Network’s “Iron Chef America.” But… we no longer live in Los Angeles. In 2007, seeking a place that was quieter, slower and more family-friendly, we packed up our four kids in the car and moved to Spokane. Since I had been diagnosed with multiple sclerosis in 1997 and the LA heat had the potential to exacerbate my symptoms, we were also seeking cooler weather – we found it!

Immediately after my diagnosis, I took up video editing (a “sitting” profession) out of fear that I’d be dependent on a wheelchair within the coming year. I still do some editing and contribute to three video companies, but more and more I’m focused on raising my kids, fishing and speaking about what it’s like having MS at various local National MS Society events. I am not dependent on a wheelchair – I’m proud to say that my MS has been successfully controlled by treatment.
U.S. Representative Cathy McMorris Rodgers
and MS Activist Mike Burns

In the years we’ve lived in Washington, I’ve also found my way as an MS activist. Initially the Society invited me to the capital for a State Action Day; I really enjoyed meeting my representatives and I take pride in being a voice for people with MS. Though I’ve been fortunate that the disease hasn’t taken my ability to earn an income, others have not – this story needs to be told. So last month, I met with U.S. Representative Cathy McMorris Rodgers of Washington’s Fifth District while she was in town on recess. A local Society staff member and I presented her with an award as the Society’s Representative of the Year, its highest honor for public officials. Representative McMorris Rodgers is recognized as a leader on disability issues by members of both sides of the political aisle.

I started the meeting by talking about my experience with MS. Then we provided details on several important issues including the Lifespan Respite Care program (she supported the Lifespan Respite Care Reauthorization Act), funding for the Food & Drug Administration (which reviews each of the new MS treatments), and finally funding for medical research and some of the exciting current MS research – which seemed really important to Representative Rodgers – as it is to me. The Society staff member also encouraged Representative Rodgers to attend the Spokane Walk MS event.

It was wonderful to finally meet Representative Rodgers in person, as I’ve been in touch with her for several years through personalization of Action Alerts and other emails. That’s what activism is all about – building relationships so that we can call on our public officials when we need them. You can be an MS activist too, even without visiting your representative in person – it’s easy to sign up for the Society’s advocacy updates and action alerts and to get engaged via social media. What will you do to make your voice heard?

Thursday, May 2, 2013

MS and the shrinking thalamus

Jennifer LaRue Huget

One of the aspects of my multiple sclerosis that I try hard not to think about is the physical damage the disease has done to my brain.

My brain had always been my best feature. I have not been blessed with great beauty or athletic prowess; I’m not musically gifted or good with my hands. But I could always rely on my brain: I’m smart, I’m funny and I can write a decent sentence when I have to.

So my first glimpse of the MRI that helped diagnose my MS was a real eye-opener. It was shocking to see the bright white spots where my own immune-system cells had attacked tissue in my brain, causing what was likely irreversible damage. I hated the term “white-matter lesions” referring to scars on the nerve fibers where immune cells had destroyed the protective myelin coating.

As I sat in my neurologist’s office viewing the MRI film on his lightbox, it was all there in black and white: MS had assaulted my favorite organ. And there was no telling how much farther it would go.

Neither I nor, I believe, my neurologist knew then to look for signs of damage on the thalamus, a gland that plays a key role in communication between various areas of the brain. Based on previous research, scientists already believed the thalamus (part of the brain’s grey matter, not the white matter) to be among the spots that MS targets heavily. But new research, if confirmed, adds evidence that shrinkage of the thalamus gland may indicate that MS is in play.

A study published April 23 in the journal Radiology tracked for two years 216 people with MS who’d been diagnosed with clinically isolated syndrome (a single neurological episode that often turns out to be the first symptom of MS). Decreases in the size of the thalamus, detected with MRI techniques, were found to be quite common among the 92 patients who eventually were diagnosed with MS. Moreover, shrinkage of the thalamus was a better predictor of which patients would develop MS than the presence of new lesions or the number of lesions detected by MRI.

The relationship between shrinkage of the thalamus and MS is not yet understood, and this study’s results need to be replicated in future studies, the authors note. But if the findings are confirmed, doctors may have another marker besides changes to the spinal fluid detected through lumbar puncture and white-matter lesions detected through MRI in their diagnostic arsenal. The involvement of the thalamus in the way MS develops might open new areas of research and perhaps lead to new treatments.

I’ll be honest: I wouldn’t be any happier learning that my thalamus had shrunk than I was to see those bright white spots on MRI that first time, or any time since. But I know that every new bit of knowledge science can amass about this perplexing disease marks a step toward better therapies and, one of these days, a cure. I am so grateful for these scientists’ hard work on our behalf.


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.