National MS Society Blog

Identification

2013-05-22T15:33:00.000-04:00

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.

Planning for the Long Term: Taking Action Today

2013-05-20T16:59:00.000-04:00

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.

Enough Already.

2013-05-14T16:05:00.002-04:00

Katie Jennings

We often use the phrase “self-conscious” to describe someone who’s very aware of what otherpeople 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.

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

2013-05-12T10:00:00.000-04:00

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.

The looming neurologist shortage

2013-05-09T11:30:00.000-04:00

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.

I’m An MS Activist

2013-05-06T15:29:00.000-04:00

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?

MS and the shrinking thalamus

2013-05-02T17:55:00.000-04:00

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 studypublished April 23 in the journal Radiologytracked 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.

Squeaky Wheels

2013-04-30T17:06:00.000-04:00

Susan Skoney

I want to be a squeaky wheel, a bee in somebody’s bonnet and a pain in someone’s backside.

I never considered myself an MS activist, but the lobbying efforts happening in Washington, D.C., to keep MS research funding in place along with my own personal experiences dealing with MS since 1999 has made me reconsider. I need to become more involved with the issues that all people with MS face every day—issues that range from building accessibility to health insurance coverage to the complex web of Social Security Disability, Medicareand Medicaid.

I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIGinfusions after I experienced complications with one of the other infusible drugs. She ordered it, but my health insurance denied it on the grounds it was not an approved treatment for MS. I appealed; they denied it again. My doctor appealed with supporting documentation and they still denied her request. Many people have used IVIGfor MS. Some other insurance providers cover the cost, but not mine. So I called a local TV station with a large news staff, some of whom are dedicated to consumer advocacy issues. They have started an investigation on my behalf and are considering a story on the bigger issue of who is really making our healthcare decisions. Stay tuned! This experience and my boldness made me realize that activism has many forms. You don’t necessarily have to go to Capitol Hill to be an activist—you just have to fight for what you believe in and need. Go to nationalMSsociety.org/appeals for more information on health insurance appeals.

Dealing with the Social Security Administration is a whole different ballgame, but they also need to level the playing field. I was denied Social Security Disability Insurance (SSDI) three times because at the time of my application I did not have enough working quarters immediately prior to my total disability. Even though I had dozens of years of continuous employment during which I paid into the system, I was penalized for being a stay-at-home mom. The rules and regulations must be changed to address the realities of those with MS who cannot rejoin the active workforce in order to establish their eligibility for SSDI.

Loopholes in the Americans with Disabilities Act still allow businesses, municipalities and even our healthcare system to pay lip service to the goal of providing disabled citizens meaningful access to public spaces. This is one thing we can all do something about. Complaining has its benefits. Squeaky wheels sometimes get greased. We people with disabilities must, as a class of citizens, speak up even when we think no one is listening. We must. Or else the drugstore will remain closed to me and anyone else who requires an automatic door. The local government office where handicapped parking tags are issued will remain inaccessible because of concrete stairs and the absence of a ramp or elevator. Even the front door to a local MS clinic will only open to patients with the help of others. So as a group, let’s advocate for each other, by advocating for ourselves. Become an MS activist, like me.

Learn more about self-advocacy at nationalMSsociety.org/selfadvocacy.

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

Menses and MS

2013-04-25T11:53:00.000-04:00

Jennifer LaRue Huget

Early this week I noticed that my right eyelid and eyebrow felt funky and my right cheek felt numb. Those are my two major symptoms of multiple sclerosis, and they appear only rarely these days – typically when I’m overtired or under lots of stress. It took me a minute to remember the other situation in which they tend to pop up. But when I did figure it out, I practically slapped my forehead and said, “Of course!”

I am menstruating this week. And when my period coincides with my being tired and stressed out, as is currently the case, my symptoms often re-emerge.

I have a feeling that many women with MS will agree that there’s a link between menstruation and MS symptoms. But science has not yet done much to pin that relationship down. According to the National MS Society website, very little research has been done in this area.

The site notes that a very small study has found that hormone replacement therapy (HRT) may benefit postmenopausal women with MS. That adds weight to the notion that hormonal changes may indeed affect women’s MS symptoms.

I have learned to take the reappearance of my symptoms, during my period or any other time, as a clear signal that it’s time to slow down. So this weekend I’ll try to catch up on my sleep and make sure I get plenty of exercise, much of it outdoors now that – hallelujah! – the sun has finally come out and warmed things up around here. There’s a new yoga studio in town that I’ve been meaning to check out; now would probably be a good time to do that. And I’ll make time to sit down with a book and a beverage to read for a while. Anything I can do to reduce my stress is bound to help.

Before I know it, my period will be over and done with. But it will have reminded me of a lesson that for some reason is very hard for me to learn, absorb, and put into action: Getting enough rest, exercising, and enjoying simple pleasures is an essential part of managing my MS.

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.

Lucky.

2013-04-19T11:44:00.000-04:00

Katie Jennings

Incredibly, it's been three months since I was diagnosed with multiple sclerosis. Time flies when you're busy and confused. These months have been a whirlwind of appointments and reading and exploration. I would not presume to give advice to the readers of this blog who have years of MS under their belts. But I would like to share my perspective about the bad and the good of being newly diagnosed, beyond just the physical symptoms.

The bad: I have no idea what's going on.

I'm a person who prefers specifics. I like plans. I like goals. I once ran a marathon largely because I printed out a schedule and refused to deviate from it for five months.

Since my diagnosis, I've spent a lot of time coming to terms with the fact that not everything is black and white. In January and February, I visited three different MS specialists, and each gave me a different diagnosis (relapsing remitting, primary progressive, and finally progressive relapsing). Each doctor – well-meaning and concerned – was absolutely sure about his or her findings and each gave me a completely different sense of what the coming years may have in store. Maybe I’m standing on the edge of a cliff. Or maybe I’m just looking out at some rolling hills.

If anything has become clear to me, it's that nothing is clear. To be told, "You have MS," doesn't actually tell you very much. Each of us will have a unique experience, and our experiences will evolve and unfold at a pace largely outside of our control. For a planner like me, that's very, very frustrating.

The good: I know exactly what I need to know.

I have a six year old, a full-time job, friends whom I never have time to see, and a family that lives too far away. Like many of you, I consider it a good day if I can return even half of the messages on my list. Life doesn’t leave a lot of time for considering the big picture.

But learning that I have MS has crystalized one thing for me. As hokey as it sounds, the things that matter are the people I love. If everything else is stripped away (and it might be!), those relationships will still be the things that matter. That’s not to say that I’ve given up on more trivial matters. I still care about whether my skinny jeans fit and where I’ll go on vacation this summer. But I have a clarity about my priorities now that I may never have gained without a big kick in the pants. MS is nothing if not a big kick in the pants.

I've chosen to be very public (obviously) about my diagnosis. In the past three months, I've heard from many, many friends – and some strangers – with messages of love and support. And however difficult the reason for them, I won't overlook what a gift those messages have been for me. I’m lucky despite it all, and I’m grateful. I hope you all have days that remind you of that as well.

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.

Annette Funicello’s Good Example

2013-04-16T16:01:00.000-04:00

Jennifer LaRue Huget

Like everyone else, I was saddened by the April 8 death of Annette Funicello from complications of multiple sclerosis. Funicello, who was 70 years old, had been diagnosed with MS in 1987.

That was a grim time to be diagnosed. In 1987, there were no FDA-approved therapies to help manage the disease, and far less was known about MS than is known today. Funicello, whose first and most persistent symptom was difficulty walking, reportedly decided to go public with her diagnosis some five years later to guard against rumors that she drank too much.

Funicello’s disease continued to progress; her balance deteriorated, and she eventually moved from using a cane to requiring a wheelchair. In her final years, she required round-the-clock care.

I am too young to have watched Funicello as a Mouseketeer or in her teen-oriented beach-blanket movies. My main memory of her is her hilarious and self-effacing performance in the 1988 “Pee-Wee’s Playhouse Christmas Special.” As part of the fun, Funicello crafted Christmas cards (with Frankie Avalon, no less), demonstrating a stenciling technique requiring a toothbrush and green paint. Then she flashed a big, goofy, green-toothed grin when her host Pee-Wee Herman reminded her (too late, evidently) to wash the toothbrush before she used it to brush her teeth.

I have often thought back to that scene as an example of the way Funicello seemed always to maintain good cheer, despite her progressing disease. I’m sure she had her share of private moments when that good cheer lapsed, but in public she remained upbeat and determined to find a cure for MS.

Not that people with serious conditions such as MS should be required to put a brave face on it all the time. But Funicello’s upbeat attitude helped increase public interest in and understanding of MS, and it surely helped attract research funding.

By the time I was diagnosed in 2001, everyone knew Annette Funicello as a celebrity with MS. As such, she was a bright spot in a largely bleak landscape and an inspiration to me. I wasn’t aware of the extent to which her disease had progressed by then, but she was still smiling and staying positive. I have tried my best to follow her lead.

Read more about Annette Funicello and her support for MS research here.

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.

The Tao of Mr. Hall

2013-04-10T16:01:00.002-04:00

Laurie Clements Lambeth

Two phrases from my high school History and Comparative Religions teacher Willie Hall woke me this morning, the sound of his voice and clomping, swaying, gait resounding in my mind. These phrases—what I call the Tao of Mr. Hall—have helped sustain me through 26 years with MS.

“Life is dukkha.”
“You have to look at things with a different pair of glasses.”

Life is Dukkha

Dukkha is a Buddhist concept with multiple meanings. Among them: suffering, transience, pain, change, impermanence. Life is suffering. Life is change. For everybody. In other words, we are all afflicted at one point or another with some kind of pain or change. Mr. Hall introduced me to this phrase the year before I would be diagnosed with MS. He himself was disabled, one shoe heavier and larger than the other. I picture him swaying through the classroom, lurching side to side. I totter like that, or shamble. It’s sometimes the only way forward. Is this dukkha? Mr. Hall might say, “If it’s part of life then yes,” (at least during our Buddhism unit).

MS brings undeniable change, reminding us of the fleeting nature of health, the losses that come with living in an unruly body. For some, unknown symptoms stir our deepest fears. I used to be most afraid of going blind from MS. And then that sort of happened, and it was different than I expected. I couldn’t read for a year and still live with residual effects, but I got through.

After that, I feared losing my memory, so at a poetry professor’s retirement ceremony I watched attentively as she looked through a wall for a word, the early stages of dementia claiming her. Nowadays, cognitive struggles and forgetfulness are “sort of happening,” and that’s dukkha, but so is the unexpected return of a stronger stride than I’ve had in years. Healing, the impermanence of a negative condition, is also change.

Recognizing that all of life is imbued with some form of suffering, it’s easier for me to accept my body’s betrayals, my mind’s cloud. Incrementally, MS has provided me early glimpses of some eventual fragilities we all will face. I already forget. I already pee my pants sometimes. I need assistance. May surviving these experiences help me empathize with seniors when they face similar humiliations for the first time.

A Different Pair of Glasses

When Mr. Hall would tell us “You have to look at things with a different pair of glasses,” he leaned forward, pinched the temple of his metal framed glasses, and shook them emphatically. Facing the uncertainties of MS, I have looked through many a pair of glasses. Literally.

The first pair I wore after optic neuritis were bifocals with a dark amber tint. They helped me read eventually, but when I looked straight ahead through the line between magnification and distance, the watery, bright haziness felt too familiar. LAST RESORT is printed on the arm of the frames. I wore others with similar tints, often hastily purchased at big box stores with too-bright fluorescent lighting. The mock-snakeskin cat eye frames on my favorite pair has since peeled back to reveal a white plastic core, like frayed myelin on a nerve.

Last week at a museum I offered my glasses to my friend as I explained my flawed depth perception from lazy eye. These amber-tinted glasses contain prisms to align my vision. “Whoa!” she said, a bit too loud, dazzled. One would think she had taken the best drug ever.

“How many do you see of things right now,” I laughed, knowing the prisms that prevent my double vision can prompt it in others.

“I don’t know, maybe three . . .” She took in the room through another pair of glasses, multiplying everything.

Looking through another pair of glasses of course refers to accepting other perspectives, getting outside of yourself for a while: re-vision, which is a huge part of the writing life. With relapsing MS, our bodies also revise old drafts of MS symptoms, which leave and return, similar but slightly altered. Poet Elizabeth Bishop revised her poem “One Art” in seventeen drafts(!). Two lines in particular illustrate the Tao of Mr. Hall:

So many things seem filled with the intent to be lost that their loss is no disaster.

The lost sensation, lost strength, lost balance, lost vision—even the lost mind: it’s horrible and frightening, but not the greatest disaster, if we can survive, even thrive.

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.

“Sexy” MS Research

2013-04-08T11:16:00.000-04:00

Dr. Rhonda Voskuhl
UCLA Department of Neurology

I guess my fascination with the immune system started when I was a kid with bad asthma. I was always on steroids or some type of shot, and I didn’t understand why other kids were well when I wasn’t. Why was my immune system so over reactive compared to other kids? Doctors were heroes who made me feel better (even with all the shots), and that heroism was part of what drew me to medical school. I also loved learning about the brain – which is really “who we are.” This made the study of the immune system attacking the brain a perfect area for my career.

Fast forward to today, 22 years into a career studying multiple sclerosis. One area I focus on is studying gender differences in MS. Women get MS three or four times as often as men, and when men do get MS it’s usually more progressive. Why? That’s the sexy part – sex differences I mean. To this end, we are pursuing whether differences in sex chromosomes or normally circulating levels of sex hormones impact disease susceptibility and disease progression.

Another area is related to pregnancy. In the third trimester of pregnancy, women with MS see up to a 70 percent reduction in relapse rates. So, my research teams and I are currently testing pregnancy levels of the hormone estriol administered in a daily pill (hormone or placebo) to non-pregnant women with MS. In our two-year multi-center trial where all participants have relapsing-remitting MS and use Copaxone, the primary outcome measurement is frequency of relapses. In our new one-year trial, the primary outcome measurement is cognitive improvement; this trial includes women with relapsing remitting as well as secondary progressive MS who use any FDA-approved disease-modifying treatment.

We’re testing estriol primarily because it’s unique to pregnancy, it’s safe, and because it helped improve lost cognitive function when administered to mice with experimental autoimmune encephalomyelitis (EAE: the “mouse form” of MS). Mice with EAE have cognitive effects similar to those in MS – demonstrated by their behavior and in lost nerve endings (called synapses) – and in mice with the MS model of disease, estriol treatment improves that behavior and rebuilds those nerve endings. Amazing!

I hope you’re as excited as I am at how close this means we are to finding a treatment that is neuro-protective (serving to protect neurons/nerves from injury or degeneration) and could therefore have disease-halting capabilities, and maybe even some improvement effects. How novel that a naturally occurring, safe pregnancy hormone could prove to protect neurons from further damage, effectively stopping MS in its tracks! We’ll share results in 2014 and 2015.

Today, thousands of people are gathered at our nation’s capital for the Rally for Medical Research – to raise awareness of the critical need to make funding for the National Institutes of Health (NIH) a priority. You don’t have to be there in person to show your support! My research would not be possible without funding from the NIH and the National MS Society. While the pharmaceutical industry is extremely important to bring new therapies to market, it’s hard for them or other investors to support research into products such as naturally occurring hormones or generic solutions because they won’t be as profitable. Academics like me are out there doing novel research toward new treatments not only to slow MS, but to stop and reverse it, through the pathway of NIH, Society and other generous donor funding and partnership. You can support this pathway, not just through donationsto the Society, but through activism. Ask your member of Congress to preserve funding for the NIH – it’s one email with a potentially HUGE response.

If I had to give one piece of advice to people with MS, it would be: please keep faith that the treatments are coming – they’re getting better all the time! There are thousands of people like me who go to work every day to bring you better and more treatment options; comment below if you want to hear more about our sexy MS research.

New pill on the block

2013-04-03T16:38:00.002-04:00

Jennifer LaRue Huget

I was thrilled to see that another oral therapy for relapsing forms of multiple sclerosis* has been approved by the FDA. With the arrival of Tecfidera (formerly "BG-12"), which should be available by prescription any time now, there are three oral therapies and a total of 10 disease-modifying treatments available in the U.S.

When I was diagnosed in 2001, there were just four therapies available. I take the fact that that number has more than doubled – and that options have expanded to include oral therapies in addition to the injectables – as a sign of the progress science has made in tackling this mysterious disease.

Having a new oral therapy on the market also makes me wonder, as I have several times in the past, whether I would be inclined to trade my daily injections for pills. I have been on the same therapy since I was diagnosed, and I have to say I’ve grown pretty attached to it.

Not that I like the big dents in my legs where the shots I give myself have degraded the underlying tissue. Nor am I a huge fan of the blue bruises on the undersides of my upper arms that mark the spots of those injection sites. And sometimes the shots I give myself in my belly just plain hurt. But I am thankful that I have never had a problem with my medication – and double triple thankful that the stuff, knock on wood, seems to be doing a great job at keeping my disease at bay.

Such a great job, in fact, that I don’t think I’d be inclined to switch to an oral therapy just for the convenience of it. But for all my fellow MSers whose therapies aren’t proving sufficient, and for all those newly diagnosed people who are sorting through their therapeutic options, I’m thrilled that this new pill’s available and that more are on the way.

You can read more about Tecfidera hereand about the full array of MS therapies here.

*People with relapsing-remitting MS and people with secondary-progressive MS and progressive-relapsing MS who continue to have relapses

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 Web site is www.jenniferlaruehuget.com.

Not Just Clumsy

2013-04-02T10:00:00.000-04:00

Katie Jennings

I was in my 20s the first time I tripped while I was jogging. I skinned my knee and my hands. I didn't think much of it. It was dark and I was running in an older neighborhood in Washington, D.C., with lots of cracked sidewalks and tree roots. It could happen to anyone. Right?

Over the next 15 years, there were many more falls. Sometimes while I was running, sometimes walking. Sometimes in very famous places (good morning, Grand Central Station!), sometimes on anonymous sidewalks in quiet towns. I never had any trouble making excuses for my tumbles – clumsiness, ice or too-high heels. I told my stories for sport at cocktail parties, laughing them off and inviting friends to join me in that laughter.

Two years ago, on a perfect October day, I fell again. This time it wasn't funny. I hit my face on the sidewalk, cut up my mouth and broke some teeth. I retired from running and found other exercises, but I was still chalking it up to clumsiness, even after a radiologist friend suggested there might be something more to it.

About six months ago, not long after my 40th birthday, I noticed that on long walks, my right foot was dragging a bit. Not enough to fall, but plenty to notice. I finally had reason to investigate further. I'm sure you can imagine what happened next.

My family doctor was stumped, and sent me to a neurologist. The neurologist put me through a series of tests and determined that there was nothing wrong with my foot or leg, but there was a slight weakness on my right side. He scheduled an MRI "to rule out" multiple sclerosis. I shared the news of my upcoming MRI with friends with concern, but not panic because MS is the kind of thing that happens to other people, not to me. Surely in a few months this would just be another good story to tell.

The appointment at which I received the diagnosis of primary-progressive MS was on December 12, at noon. (And I was late, so it might even have been 12/12/12 at 12:12. How about that?) My neurologist told me there were lesions, told me it was MS, gave me a lumbar puncture, and then left me to lay still for 30 minutes. Those are minutes that I’ll never forget. These have been months that I’ll never forget.

Suddenly, the future that I'd imagined for myself no longer exists. I need to begin creating a new one. In some ways, I’ve been forced to reimagine my past as well. All those falls: not just clumsiness. I’m 40, but I’m getting to know myself all over again.

The past few months have been scary, disappointing, stressful and dark. (And believe me, winter in Vermont can be dark dark dark even without MS specialists to see.) Surprisingly, they've also been joyful, reassuring and filled with hope and laughter. I’m just getting started, but I look forward to sharing more about my journey with you here.

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.

Why don’t they believe us?

2013-03-28T09:00:00.000-04:00

The Unspeakable Bits; From A Life With MS

After months (or even years) of questioning our symptoms, questioning medical professionals, questioning “Web – the Great and Powerful,” and questioning others with multiple sclerosis, we have reached the inevitable answer: we have MS.

Why then do so many people feel like they have the right to question us?

We have just acknowledged the seventh anniversary of our Life with MS blog and in those years nothing has frustrated me more than reading about our brothers and sisters being told they were “faking,” were “lazy” or that their symptoms weren’t “real.” Look, I know people can’t see many of our symptoms, but I can’t see their heart beating within them either. Does that mean I should call them “heartless?”

Well, now that I think about it…

We all know that just because a symptom might be invisible, it does not mean that a symptom isn’t real. Many people will experience headaches in their day-to-day life, but would think us total jerks were we to say to them, “Well, you look fine to me.” Why then do some people – even some people who are very close to us – take up a pike and run us through with such phrases? More importantly, why do we let them?

Self-Advocacyis a pretty broad and sometimes misunderstood term. I know I didn’t understand it fully when I first heard of it. It has to do with standing up for ourselves even if it’s difficult (or impossible) to actually stand. But self-advocacy begins with knowing what we need, finding out how to get it and not allowing anyone to tell us we are wrong.

We are not to be bullied – and make no mistake about it there are some people who will try to bully us because they see us as weaker than or even “less than” because of MS. We should not accept anything short of empathy from those we love and understanding from MS professionals. I believe we should measure people’s treatment of us and our MS the same way we would in any other part of our lives.

Would I accept a co-worker who told me they didn’t believe my computer was having trouble? Would I allow a family member to speak ill of me because my car was in the shop? Would I keep a friend who stopped asking me to do things because I wear green trousers? Would I keep going to an eye doctor who told me I could read his chart but wasn’t really trying?

A big, fat “of course not” to all of the above.

If people do not believe that I have MS, why would I want them in my life? If said people must be in my life (co-workers, for example) I mustn’t let them get away with this abuse. If my family pushes the bounds of decency, I am allowed to push back.

We do not have mythomania (compulsive lying), we have multiple sclerosis. Seriously; why won’t they believe us?

Wishing you and your family the best of health.

Cheers

Trevis

You can follow Trevis via TrevisLGleason.com, his Life With MS Facebook Page on Twitter and on the EverydayHealth.com “Life With MS” Blog. And also, check out his bi-monthly blog for the UK.

A spring in my step

2013-03-26T11:28:00.000-04:00

Jennifer LaRue Huget

According to the calendar, it’s supposed to be springtime here in Connecticut. But the weather begs to differ; an icky mix of sleet and rain is dripping from the sky, glazing the six-inch coating of snow that accumulated overnight.

It’s been a long, cold winter in these parts. That hasn’t slowed me down – much. I’ve walked the dog in all kinds of weather, braving wind, sleet, frigid temperatures and slippery paths. I’ve kept my spirits up despite the early dark in the evenings and the late light in the mornings.

I made up my mind long ago that if I were going to live in New England, I would have to learn to love it in all seasons. Otherwise, I might find myself less than happy for months at a time. That seems like a waste to me. So I forced myself to embrace winter.

But I’ll admit I’m more than ready for spring and ultimately summer. The sight of a robin on the lawn the other day made my heart glad. Because, as much as I say I’m okay with winter, I really don’t like being cold. In fact, unlike many people with MS, for whom heat exacerbates symptoms, I much prefer to be warm, even hot. Give me a tank top, shorts and a nice, long, sweaty day, and I’m golden.

It wasn’t always that way. Growing up in the Washington, D.C., area, I hated the blazing sun and the humidity that started in July and lasted through the end of September. But back then I lived in air-conditioned luxury, and the contrast between the cold I experienced inside buildings and cars, and the heat outdoors was miserable.

Today I live in a house with no air conditioning. I don’t even run the air when I’m in the car. Over time, my body seems to have adjusted. At first I was just okay with the heat. Then I kind of started to like it. Now I crave it.

But that’s not the whole story. About the same time I learned I had MS, I started experiencing funky symptoms whereby my fingers would turn yellow and waxy, and also kind of numb whenever I got cold. I finally learned I could reverse that by running my wrists under warm water in the kitchen sink. But before returning to normal, my fingers turn all kinds of strange colors, purple and blue and red spots mottling the wax-yellow background. It’s quite the horror show – just ask my kids!

I have since learned that I suffer from Raynaud’s phenomenon, a generally harmless, though ugly and uncomfortable, condition in which the capillaries in my hands (and now sometimes my feet, too) constrict and draw blood away from the surface of my skin. Another thing I have learned about Raynaud’s is that it can, like so many other things, including some symptoms of MS, be triggered by stress.

So I look forward to the coming warm months, which promise relief from the cold and from Raynaud’s, in a big way. How about you? Are you more comfortable and happy when it’s cold outside or when it’s nice and hot?

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 Web site is www.jenniferlaruehuget.com.

Interesting Falls I Have Had

2013-03-25T15:21:00.000-04:00

Susan Skoney

I was in a perfectly straight line, flat on my back, half in, half out of our powder room, with my head and shoulders resting on the seat cushion of my wheelchair. The cushion had slid with me and I’m sure it had protected my head and neck from hitting the hardwood floor of the hallway. This mishap occurred on election night. My husband Michael came in the front door, saw me, dropped his briefcase and computer in the kitchen, and rushed over. My husband helped me get back into my wheelchair, pushed me into the powder room where I had been headed for my pre-vote pit stop, and before I even got up I was down on the floor again.

I started to cry while Michael stood over me and pronounced that he could not get me up and was dialing 911. He told me to get a grip. I did not appear injured and at least I had all my clothes on! As I laid there, my daughter Hannah appeared, with an “oh there’s mom on the floor again" look. At least she inquired about my wellbeing and from my prone position I reassured her I was OK. Then, without skipping a beat, she inquired if I thought she had too much eye shadow on. She leaned over me so I could get a closer view and we briefly discussed the concept of how less is sometimes better than more.

As we waited for reinforcements to arrive, I remembered a summer when I had found myself in a similar situation. At the time I had a substitute aide, a woman of great proportion with tattooed eye brows. With the help of my petulant daughter, she dragged me out of the very same powder room and deposited me back in my chair. I was unhurt, but badly shaken. Hannah, sporting the same exact mom-on-the-floor look she had tonight, announced that she was going swimming. Then the aide asked if I knew that she worked in a strip club when she wasn’t doing home care. The timing was perfect: My mind immediately switched from self-pity to bizarre fascination.

As I remembered this fond memory, the EMTs arrived and quickly had me back in my chair. God bless them! They even told me to never hesitate to call. I pulled myself together; Michael and I voted; we grabbed a bite to eat and returned home to watch the returns. Hannah came in and joined us. It was as if the evening’s earlier events had never happened. I don’t know about you, but falling to me is one of the most frightening aspects of having MS. Injury, embarrassment, loss of control and that nagging little thought that a fall could happen any time, any where even on a good day. But, on the other hand, my family’s ability to take such mishaps in stride reminds me that life does not stop for MS. Maybe it pauses sometimes, but it does not stop. And even from the floor, life can be interesting. A strip club?

Susan Skoney was diagnosed in 1999. She lives in western New York with her husband Michael and children Hannah and Alex. She worked many years in public relations and advertising, and has just started writing about her MS in the last few years.

What triggers MS and MS attacks?

2013-03-22T12:12:00.000-04:00

Bruce Bebo, PhD

National MS Society

Hi again from the American Academy of Neurology meeting in San Diego. There have been some intriguing reports from researchers looking for risk factors that contribute to making a person more likely to get multiple sclerosis, and other reports focused on factors that might trigger MS attacks or even progression. To me, this line of research is really important because it could lead to ways to take control of disease activity and even to strategies to prevent people from getting MS.

Danish researchers have noted that the incidence of MS has doubled in women in Denmark since 1970, and they’ve been working to understand what’s behind this alarming rise. The Danish MS Registry captures information on most people in their country who have MS. They found that pregnancy offered significant protection against developing MS lasting up to five years after giving birth. I’m certainly not advocating that women should get pregnant to prevent MS. But this study and others like it offer more clues that will help to determine the influence of hormones and other factors in MS.

It was also exciting to hear firsthand results from recent studies reporting that dietary salt might have a role in increasing the risk for MS. The take-home message from these studies was that higher than average physiological levels of salt can increase the aggressiveness of immune cells that are thought to play an important role in MS. They also showed that adding salt to the diet of mice led to a more severe form of an MS-like disease called experimental autoimmune encephalomyelitis. There was a lot of discussion and debate about whether the high-salt western diet might be responsible for the increased incidence of MS. We will have to just wait for more studies to know for sure, but it is probably still a good idea to keep the fast-food burgers to a minimum.

This year’s Dystel Prize winner Professor George Ebers presented his work on the influences of the environment and genes passed down through families during a special prize lecture. You can read about his work here. In a nutshell, his studies have led to the understanding that where you live, and how much sun exposure you get (and consequently how much vitamin D your body makes from the sun), are some of the key factors that influence the risk of developing MS. I’m looking forward to results from clinical trials that are testing whether vitamin D supplements can reduce disease activity in people who already have MS.

What about triggers for MS attacks? Dr. Mauricio Farez of Argentina analyzed whether common vaccinations are linked to the risk of developing MS or triggering MS attacks. He failed to find evidence that any common vaccines contribute to the risk of MS, and he confirmed previous reports suggesting that flu vaccines, including H1N1, don’t appear to trigger relapses. But the big surprise for me was his report that a less common vaccine that protects against yellow fever may substantially increase the risk of relapse. Even though this is a preliminary finding, I recommend that if you are traveling to an exotic land (luck you!) and need this vaccine, you should talk with you MS doc about how to weigh these risks.

We don’t know yet why some people’s MS progresses slowly and others experience rapid progression, but I found a small study from investigators at Louisiana State University interesting. They asked whether blood sugar is linked to levels of MS disability, and found that people with higher levels of glucose were more likely to experience progression. This needs more study, but it opens up the possibility that strategies used to treat diabetes should be tested in MS.

I’ve only scratched the surface of what’s being reported here, and I hope you’ll read the upcoming summary that will give you more details. In the meantime, summaries (abstracts) of the meeting can be viewed on the AAN Website.

Bruce Bebo, PhD, is Associate Vice President of Discovery Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a driven and passionate Society volunteer, successful fundraiser and advocate, fueled in part by the fact that his mother has lived with MS for more than 30 years.

The importance of exercising our bodies and minds

2013-03-21T20:26:00.000-04:00

Bruce Bebo, PhD

National MS Society

I’m reporting again from the American Academy of Neurology meeting in San Diego. A meeting like this involves a lot of sitting, so I try to start each morning with some exercise. Turns out that emerging evidence suggests that exercise doesn’t just help keep us physically fit, but also helps our brains function better; presentations this week on exercise, rehabilitation and quality of life issues suggest this holds true for people living with MS.

A small study from Society-supported scientists at the Kessler Foundation in New Jersey tested whether aerobic exercise – the kind that gets you breathing fast and your heart beat going – affects the brain. Using MRI scans and memory tests, they found hints that aerobic exercises done in 30-minute sessions, three times a week over three months improved memory and increased the volume of the hippocampus, a part of the brain involved with memory and other functions. These preliminary results are intriguing and will hopefully encourage further studies that yield more definitive conclusions and maybe even recommendations.

Another study examined the potential of longer-term aerobic exercise to build endurance in people with MS. This study involved 60 people split into two groups: people with fatigue and people without. Both groups began individualized endurance (treadmill) exercise. After six months of exercise, both groups showed improved oxygen consumption, but those who started out with fatigue showed improvement in their fatigue scores, but it took at least nine months of the program to see a difference. So while you may not feel the effects at first, persistence can pay off!

Some very interesting data illustrating how the brain reorganizes to adapt to MS damage was presented by a research team from the San Raffaele Hospital in Milan, Italy. This team looked at the impacts of a 12-week computer-assisted course that focused on training to increase memory and attention (the course was previously reported to improve attention and executive thinking abilities). Using functional MRI, which allows a real-time glimpse of the brain at work, they also found indicators that brain circuitry and activity had increased in specific areas. This improvement appeared to persist at least six months after the training was completed.

Researchers from Milan and from Kessler also reported that people with MS with more “brain reserve” (larger brain size) and more “cognitive reserve” (higher levels of cognitive leisure activities such as playing music, writing, dancing, or painting when they were in their 20’s) were at lower risk for cognitive changes associated with brain lesions. Even when brain size is accounted for, those with more cognitive reserve appear to have lower risk for cognitive changes. There’s nothing any of us can do about the size of our brains. But growing evidence suggests that people may be able to build cognitive reserve by engaging in enrichment activities (Words with Friends anyone?). It’s exciting to think that actions we can take, such as some mental and physical training, can actually alter brain circuits, improve brain activity and possibly help slow the progression of MS. What do you do to keep your body and mind active?

Summaries (abstracts) of the meeting can be viewed on the AAN Website.

Emerging therapies at the American Academy of Neurology meeting

2013-03-20T15:53:00.000-04:00

Bruce Bebo, PhD
National MS Society

I’m excited to be reporting from the American Academy of Neurology (AAN) meeting in San Diego; it’s quite impressive to see large auditoriums overflowing with neurologists and other professionals attending presentations about emerging therapies in MS. Over the next few days I will share what I believe to be the most interesting MS research being presented here.

One study I’m particularly intrigued by is a small trial of the blood pressure medicine, Amiloride, in 14 people with primary progressive MS. Amiloride had been shown previously to have neuroprotective properties – the study authors found that treatment resulted in a lessening of brain shrinkage associated with progressive MS. I am looking forward to seeing if this medication has similar effects in a larger study underway in the United Kingdom.

Another study of over 1000 people with MS is underway – designed to determine if Gilenya can slow down disability in primary-progressive MS, compared to placebo, after 3 to 5 years of treatment. I also find it encouraging that several other large studies like this for progressive MS are currently in planning or underway.

While there have been many successful new therapies introduced in the past two decades, most prove ineffective for people with progressive forms of MS. What excites me most about these studies is that they aim to bridge this gap and offer hope for real treatment options for people with progressive MS.

The first results of a phase III trial of peginterferon beta-1a in relapsing MS are also being presented. The study is testing a new formulation of Avonex that should stay in the body longer than the standard treatment. Successful trial results could mean that the frequency of dosing could be extended to as long as once every four weeks – reducing the frequency of injections.

I also attended presentations on various outcomes from extension trials of BG-12 and alemtuzimab. Researchers continue to add to our knowledge of the risks and benefits of these two meds currently being evaluated by the FDA for the treatment of relapsing MS. Studies are also underway on other emerging therapies for MS, including ocrelizumab and daclizumab HYP. Results will be shared on our research news as they become available.

More treatment options ultimately means that people with MS have a better chance of finding a therapy that fits their specific needs and lifestyle while reducing the frequency or severity of MS attacks or disease progression.

This is just a quick glimpse of some things that stood out for me so far – I will be sharing more, so stay tuned. Visit AAN’s website for brief summaries (abstracts) of the meeting.

Connecting via MS

2013-03-20T10:46:00.002-04:00

Jennifer LaRue Huget

If you’re like me, once you start telling people you have multiple sclerosis, you probably start hearing about – and from – other people who also have the disease. Perhaps because I was quite public about my diagnosis, writing about it in a major national newspaper, I heard from lots of folks, many of them recently diagnosed and looking for information, guidance and support. I was happy to hear from them and to help however I could.

Having MS places us in a large and growing community – one most of us would just as soon not be part of, if we had our druthers. But I have found corresponding with other people who have MS to be rewarding in ways I couldn’t have imagined. I have “met,” mostly online, lots of nice people I wouldn’t likely have connected with under other circumstances. And I’ve developed a much deeper sense of compassion for people, not just those whom I know have MS, but for people in general. I have come to understand that almost everyone faces challenges, whether they’re physical, mental, financial, or social. Realizing that has helped me give others the benefit of the doubt, and it often stirs up in my heart a feeling of tenderness toward others that I hadn’t recognized before I was diagnosed.

The connections I have made through having MS form a big web that stretches across the country and all over the world. The National MS Society is celebrating those kinds of connections with its new public awareness campaign, which highlights real-life incidents in which people with MS have connected with one another in important ways. Often those connections take place online, and often they involve one person’s sharing key information that benefits another person whom they have never actually “met.” It’s a powerful concept and one that the Society is right to celebrate. Here’s more about the “EveryConnection Counts” campaign:

MS divides minds from bodies, pulls people from their lives and away from one another. MS is a destroyer of connection. But it is possible to build connections that MS cannot destroy. Our connections raise questions, find answers, bring knowledge and provide hope. Every connection we make is a small victory, and our small victories will create larger ones that will help end MS forever. Every Connection Counts.

I value the connections with other people that I have made through my having MS. But the person I’ve connected to most strongly is myself. My diagnosis more than a decade ago was a real eye-opener. It made me re-think the way I was leading my life. My sudden uncertainty about the future forced me to decide which elements of my life I treasured most and spurred me to shed things that weren’t serving me well.

I made a huge effort to slow down and savor every day. I tried to make time to do things I love. That meant carving out time to read and do yoga. It meant taking time to scratch my dog’s belly a dozen times a day. It also meant slowing down and being mindful, really tasting my morning coffee and basking in the morning sunshine. And it meant taking time to spend with my family and friends, my connections with whom I have learned never to take for granted.

Connection works: The disability civil rights movement

2013-03-18T16:07:00.003-04:00

Helen Marie Russon

I love the “connection” theme for this year's MS awareness campaign. As scientists are discovering the amazing process by which nerves start to form new connections (remyelination), we in the MS community are also finding new and creative ways of doing the same thing. This month, we are broadening and strengthening connections within our neighborhoods and throughout the world.

Connections are often created because there is a common need, combined with a realization that this need can only be met by a group effort. In many cases, the resulting connection stays alive throughout generations and becomes a part of history. Such was the case with a movement that many people still don’t know about: the disability civil rights movement.

People with disabilities used to be even more isolated than we are today. Not only were we overlooked in the civil rights laws of the 1960's, but in some cases we underwent forced sterilization and mandatory institutionalization. There was also a general assumption that if we were unable to use a sidewalk or get into a building to apply for a job, it was the unfortunate hand we had been dealt and it was our responsibility to accept and cope with it.

Things changed when people with disabilities – all kinds of disabilities – worked together to change peoples’ minds and eventually change the law. Ed Roberts, the “father of the disability rights movement,” used the press in 1967 to persuade University of California, Berkeley that he could attend classes in an iron lung. In 1977, disability activists organized a five-week sit-in at a government building in San Francisco, until the Carter administration finally implemented regulations to make public buildings accessible. And in 1988, hundreds of students and alumni at Gallaudet University for the Deaf effectively closed down the campus until a deaf president was hired.

It was these types of protests that eventually led to George H. W. Bush signing the Americans with Disabilities Act (ADA) into law in 1990. In fact, the Society just honored a congressionalchampion of the ADA at the annual Public Policy Conference. Although we have a long ways to go before we have finally achieved a society free of disability discrimination, we are in debt to – and forever connected with – these heroes.

Helen Russon is an attorney who currently investigates civil rights complaints for the Oregon Bureau of Labor & Industries. She also teaches a class on Disability Law for the Willamette University College of Law in Salem, Oregon. Since being diagnosed with MS in 1997, Helen has done volunteer work for the NMSS, and has written several articles for Momentum Magazine regarding both the physical and legal challenges of being a person with multiple sclerosis.

The MS App

2013-03-13T17:50:00.000-04:00

Michael Wentink
Blogger, A Road Less Traveled...

Growing up in the 80s, family trips to the local shopping mall usually involved my brothers and I heading to the arcade and playing video games until our parents gave us the sign that it was time to go. For this ten year old, it was sweet music to my ears as the fresh quarters rattled around in the coin dispenser, the converted dollar bills courtesy of Mom and Dad. My time and quarters were spent playing mostly sports-themed games, as not much else really piqued my interest.

After I spent my last quarter, I’d wander over to the game “Gauntlet,” not to play, but to watch for a few minutes until it was officially time to leave. “Gauntlet” was very different from “Tecmo Bowl” and the other sports games I usually gravitated toward; rather than trying to beat another team by scoring more points, it was about pure survival.

My eyes were always drawn to each player’s score, highlighted in big red numbers, usually rapidly descending as players struggled to complete the various levels. There was one memorable phrase I remember from the game: “Your life force is running out!” It was uttered by the computer narrator whenever a player’s health had decreased to a threatening level. As I watched, I’d try to predict in my head at what precise moment the computer would start providing this ominous and repetitive alert.

SO TIRED OF BEING TIRED

For those with MS, energy is a prized resource, available only in limited quantities. Read any medical definition of multiple sclerosis and “fatigue” will be listed as one of the more common symptoms. The quotes are an intentional and caustic nod to this word; personally, I find the term “fatigue” lacking in accuracy and descriptive affect on the realities of living with MS.

Webster’s defines fatigue as “weariness or exhaustion from labor, exertion or stress,” but with MS no exertion is required to enter a state of exhaustion; rather, weariness is constant - a baseline. Normal, daily routines, like showering and shaving, are obstacles to be planned for and managed, all in the name of preserving my energy. Even on my best days, I regularly feel the dark cloud of exhaustion hovering, tempting me to surrender and retreat to a dark and quiet spot, isolated from others.

One moment I’m reading a story to my children or enjoying a dinner with my wife … then suddenly, my energy has vanished, my bones feel cold and achy, my mind is hazy, unable to think clearly. Often, I worry that my children think I’m ignoring them, my friends and family feel I’m disinterested, or new acquaintances wonder why I seem so tired and unengaged.

MY OWN GAUNTLET

But what if I had my own colored indicator, floating above my head, clearly identifying my energy level? My “life force” would blink in big numbers, and a friendly alert would go off when a low level was reached, notifying me and others that my energy was tapped out or, as with most days, surviving on fumes.

Understandably, some might hesitate to broadcast their personal battle, a scarlet MS for all to see. But it would also be a portal for seeing through the MS looking glass, easing confusion and misunderstanding, highlighting our strength in battle and a wonderful way to educate ourselves and others on the moment-by-moment struggle we face against our own bodies.

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.

Keep moving!

2013-03-08T13:52:00.000-05:00

Jennifer LaRue Huget

I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.

I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.

When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.

But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.

I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.

Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.

The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.

One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.

According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”

The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”

Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted.

Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority.

Learn more about exercise and MS at the National MS Society’s Exercise page.

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 Web site is www.jenniferlaruehuget.com.