Thursday, March 28, 2013

Why don’t they believe us?

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-Advocacy is 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.comhis 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.

Tuesday, March 26, 2013

A spring in my step

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.

Monday, March 25, 2013

Interesting Falls I Have Had

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.

Friday, March 22, 2013

What triggers MS and MS attacks?

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. 

Thursday, March 21, 2013

The importance of exercising our bodies and minds

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.


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. 

Wednesday, March 20, 2013

Emerging therapies at the American Academy of Neurology meeting

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.




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. 

Connecting via MS

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.




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.

Monday, March 18, 2013

Connection works: The disability civil rights movement

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.


Wednesday, March 13, 2013

The MS App

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.

Friday, March 8, 2013

Keep moving!


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 study being 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.

Tuesday, March 5, 2013

Old Friend


Laurie Clements Lambeth

"For a long time now I have been aware that you are taking up more of my life everyday..."   
- W.H. Auden, Letter to a Wound


My Valentine Ian gave me the most extraordinary present this year: a gleaming silver oligodendrocyte on a chain: Like a starfish, but smoother, less symmetrical, reaching in all directions. Oligodendrocytes are the cells that repair and create myelin, the insulation stripped away by multiple sclerosis. I picture my brain’s oligodendrocytes wrapping their many tentacles around my scarred axons, feverishly working to insulate my nerves. They wear happy, determined faces. But it’s more complicated than that. Now I imagine them lounging on what must be a couch of a partially myelinated axon, chatting, dozing, or just slacking off. As I learn more, the picture changes: these oligodendrocytes have done their work and have retired. They would like to help, but they need more recruits. Research into making the cells that could create those new recruits and remyelinate MS lesions, possibly resulting in restoration of lost function, is just one of the many areas of investigation that might help us understand and possibly cure MS.

I treasure this necklace. It holds symbols of protection and repair. Many years ago Ian gave me my ex-fiancĂ©’s first novel, which I’d helped along in early drafts. On the gift tag he wrote, “I hope I can always give you what other men can’t.” Now, he’s given me a symbol of something my body can’t fully offer.

A friend recently told me she’s had MS 13 years. That’s about as long as Ian and I have been married. Which brings me to the realization that my relationship with MS is the longest-running relationship in my life, twice that of my marriage. Like Auden and his wound, “nothing will ever part us.”

My first eight years with MS were fairly uneventful. I could forget about the disease sometimes. With no treatment options available, I simply adapted. Sometimes, though, riding my horse over jumps in horse shows, I would feel MS passionately seize my hand so I felt nothing else and dropped my rein. He at least was kind enough to do this only on the side the judges couldn’t see. (I will henceforth refer to MS as a he, but he is invisible, inaudible and rather unpredictable, most likely genderless.) Minor symptoms would bring me down to earth, I thought; forgetting was the reward. After a few years, MS decided I should quit riding and training regularly. He can be a bit possessive.

When the first disease-modifying therapies (DMTs) became available, faculty in my graduate program would stop me in the hall, asking if I was hopeful about the latest medication. My standard reply: “but that would mean saying good-bye to an old friend . . .”

“Yes, but MS is not such a good friend,” a poet wisely replied in his melodic Polish accent.

Gradually, MS visited more often, gripping my left leg, pulling it back with each stride, or hitting my head with the boxing glove of dizziness. I always came back to baseline after the flare miraculously left, so I could still forget about MS for long stretches of time. About a dozen years after diagnosis, I was put on disease-modifying therapy. I learned that this did not mean saying good-bye to my friend; rather, it reminded me that even when MS wasn’t making his presence known, he was still around. Depending upon which medication, injections at regular intervals would remind me that MS was imperceptibly slipping his arm across my shoulders, particularly close to my spine.

I no longer forget about his presence. In fact, I am grateful for the days I walk without having to think about each step, or when I can walk my dog, fingers deftly wrapping the leash, after the hard work re-learning how to use them. My amber-tinted contacts and glasses cut most glare, pain that never quite left after optic neuritis. The lenses turn my eyes coppery, beautified by illness and treatment. My vision is literally colored by my disease. Thanks to MS research I take medications I never thought possible to mask other lasting symptoms such as spasticity and pain, helping me forget, but not quite. The treatment makes me remember. Also, literally, a pill helps my memory.

MS ultimately cannot be forgotten. It is both my friend and foe, intermittent but lasting. If I am an MS activist, I know it is through awareness—my own, and creating it in others—in my teaching and writing, in everyday interactions, knowing that the disease is so deeply linked to who I am and what I do.

We mustn’t let anyone forget, least of all ourselves. Or Congress.  This week over 300 MS activists are meeting with federal legislators on Capitol Hill to urge continued funding for MS research and the FDA, standing up for those of us whose stance is words, for those of us whose stance is experience, for those of us who may know weakness, but turn our weakness into a source of strength.

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