Thursday, February 28, 2013

Speaking the Unspeakable to Legislators

The Unspeakable Bits; From A Life With MS

Earlier this month I brought up the subject of how difficult it can be for many of us living with this disease to find a doctor who specializes in multiple sclerosis.

As hundreds of MS activists will descend on our nation’s capital to meet with Congress and push for funding to better help people living with MS, I’d like to take this opportunity to add a positive postscript to last month’s blog. I believe that it illustrates why we should bring up the difficult topics … someone just might listen and help.

Although the metropolitan corridor of the Seattle area has a wealth of very well-qualified MS specialists, much of Washington state, like many areas in the country, suffers from a shortage of doctors who are specially trained to understand and treat MS. Such was the shortage of qualified docs in some rural areas that it was not uncommon for people to have to drive (or be driven) several hours in order to see their doctors.

While those outside of the MS community may not see the additional layers of hardship this kind of distance to a doc would bring, we know all too well what it entails: 
  • Long drives may require one (or several) days off work 
  • Many of us cannot make such long drives alone 
  • Finding a driver means someone else may have to leave work 
  • Fatigue can require expensive hotel stays 
  • With gas prices high, the financial burden only increases 
  • And the list goes on…

One particular barrier has been Washington’s restrictive medical licensing laws that make it difficult for foreign-educated physicians to get their medical license, even if they have received post-medical school, specialized MS training at American institutions.

Seeing a need and the serendipitous resource of a well-respected university teaching hospital (which houses the Western MS Center) and many other respected MS Centers, the National MS Society began working with Washington’s legislative bodies to craft legislation to remedy the situation.

With the dogged determination of local staff, volunteer activists and a particular ally in a respected representative who also happens to be an MS nurse, three years of hard work and lobbying paid off for the 12,000 people living with MS in the state.

Working across party lines – patients, care partners, staff, volunteers, activists, doctors, legislators and government officials – takes time, planning and immense effort. Only with such efforts, however, can we address the difficult questions, hardships and concerns of the MS community.

At the federal level, there are serious questions of funding for research and regulation of drugs and medical devices that MS activists will take to Capitol Hill next week and I wish them the very best of luck.

If you feel like it’s time to speak of the unspeakable bits of a life to your legislators, if you have concerns with the way that your government sees our disease, if you want to do something that will help not only yourself but our greater MS community, I encourage you to do as I have done and become an MS activist. Because how else, really, is it going to get done?

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.  

Tuesday, February 26, 2013

Be your own best advocate

Jennifer LaRue Huget

Your whole life changes when you learn you have MS; mine sure did. In my case, those changes weren’t largely physical. Rather, my diagnosis caused me to reconsider my place in the world and the way I interact with other people and institutions.

Like many others with MS, the process of learning to live with my condition has opened my eyes to the necessity for me to become an advocate – for myself and, by extension, for others with MS.

I suppose I was accustomed to the concept of advocacy before I was diagnosed. As a mother I advocated for my kids, seeking the best health care, education opportunities and play dates possible.

Those of us with MS also have to learn to advocate for ourselves. We need to assert our own needs and effectively communicate them to our doctors, employers, insurers, even our families and friends. But self-advocacy doesn’t necessarily come naturally. I, for one, have always been a bit reticent to ask others to do things for me.

The National MS Society, recognizing that many people are in the same boat, offers helpful advice for learning to take on the role of self-advocate in the key realms of our lives, from our workplaces and schools to our families and communities.

A recent legal settlement highlights the importance of self-advocacy for people with MS navigating the healthcare system.  In the case Jimmo vs. Sebelius (in which the Society was a plaintiff), a federal judge on January 24 approved a settlement that reaffirmed patients’ access to Medicare benefits regardless of whether their condition improves as a result of the treatment provided.

A bit of background: For decades, Medicare beneficiaries, especially those with long-term or degenerating conditions and those who need rehabilitation services, have been denied care on the grounds that those services didn’t result in improvements to their condition. For patients whose conditions remained stable or chronic, rehabilitative services were often deemed to be for “maintenance only,” and thus weren’t covered.

The new settlement reinforces the original intent of the law – that it’s not legal for Medicare to deny coverage on that basis. It requires the Centers for Medicare & Medicaid Services (CMS) to revise its Medicare Benefit Policy Manual and numerous other policies, guidelines and instructions to ensure that Medicare coverage is available for skilled maintenance services in home health, nursing home and outpatient settings.

Here’s where self-advocacy kicks in. The new policy is already in force. People with MS don’t have to wait until the CMS revises its documents to gain coverage for the care they need. People who are denied Medicare for skilled maintenance nursing or therapy because they are “not improving” can appeal those decisions right away. That’s a very important form of self-advocacy.

To that end, another of the plaintiffs in the settlement, the Center for Medicare Advocacy, offers self-help materials to help patients understand coverage rules and learn how to contest Medicare denials for outpatient, home health, or skilled nursing facility care. And the Society has produced a guide to facilitate communication between MS clinicians and health plans when disputes over coverage arise.

Of course, it’s important to bear in mind that the Jimmo settlement doesn’t guarantee coverage; providers and people seeking Medicare coverage for treatments still have to demonstrate that the care is medically reasonable and necessary. Still, eliminating the standard that required patients to show improvement in their condition, not just maintenance, is a big step in the right direction – and one that we should all be aware of as we navigate the healthcare system.

The term “self advocacy” can sound kind of daunting; when I first heard it, I thought it meant going to Washington, D.C. to lobby for funds for MS research. I have since learned that, yes, lobbying is at one end of the self-advocacy spectrum. But at the other end of that spectrum there are many everyday opportunities for self-advocacy. Making sure you’re getting the medical attention you need? That’s self-advocacy. Reminding others that you can still do your job well, despite any limitations your MS places on you? That’s self-advocacy.

At the most basic level, though, self-advocacy begins with becoming informed. As I said at the start, self-advocacy doesn’t come naturally to me. But I can read and learn and discuss issues related to MS. Armed with information, I can advocate for myself with the best of ‘em.


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.

Friday, February 22, 2013

I can’t stress this enough: Stress is the enemy


Jennifer LaRue Huget 

I’ll never forget the day I knew something was wrong with me.

I was sitting in a business meeting at which big decisions were being made. But I desperately wanted it to be over so I could get home and finish the cleaning, packing, getting the dog to the kennel, and the other three zillion items on my to-do list before leaving for a vacation with my husband and two young children the next morning.

As I glared at the clock and pretended to listen to the proceedings, the right side of my face went numb.

More precisely, it felt as though Elmer’s Glue had been left to dry on my cheek, causing the skin to pull and stretch in an uncomfortable way. And my right eyelid felt heavy and stupid.

I glanced around at the people sitting nearby, wondering whether they noticed my looking different. Apparently not. The meeting proceeded and finally ended. I drove home, worried and wondering what was up.

The numbness and dried-glue sensation subsided, and I was able to enjoy my vacation. In fact, months passed before the other shoe dropped. On another stressful afternoon, my left fingertips began to tingle. That’s when I began the series of medical appointments that ultimately led to my diagnosis with multiple sclerosis.

Since then, I’ve noted a strong connection between my stress level and my symptoms. During particularly stressful times, my legs become leaden. When that happens, I now understand that it’s time to slow down and regain control over my life – and my MS.

Stress is a widespread phenomenon in the United States, and, according to a survey released this month by the American Psychological Association, one that appears to be getting worse all the time. Among the survey’s findings: “Almost three-quarters (72 percent) of respondents say that their stress level has increased or stayed the same over the past five years and 80 percent say their stress level has increased or stayed the same in the past year. Only 20 percent said their stress level has decreased in the past year.”

On top of all that, only 37 percent of respondents said they were doing an excellent or very good job of managing stress. 

Like many of you, I am constantly juggling work and family and pets and all manner of other responsibilities, and simply committing to slowing down to reduce my stress doesn’t make it happen.

So how do I manage my stress? Number one on my list of stress-management techniques is physical exercise. I am fortunate in being able to take advantage of a gym, where I run on the treadmill, ride the stationary bikes, and do whatever one does on an elliptical trainer.

I also do yoga. Lots and lots of yoga. It’s calming to my body and soul, and I depend on it to deliver a feeling of calm and contentment no matter what’s going on in my life. I also gain strength and support from the friendships I’ve developed with the people I practice yoga with. Just the practice of monitoring my breathing, remembering to inhale and exhale with intention, helps me relax.

But perhaps the activity that delivers the biggest stress-reducing bang for the buck is my near-daily dog walk. Every weekday, and often on weekends, my two dear girlfriends and I take our three brown dogs for a long walk. It’s good for the dogs – and even better for us. We gab and chat and complain and compare notes about our lives, our kids, books we’re reading and TV shows we love (and some we hate). And every single time we walk, I come home feeling refreshed, rejuvenated and relaxed.

As a bonus, the long walk tires my puppy out, so when we get home he takes a nice nap, and I can get my work done. It’s a win-win situation – and a sure-fire stress beater.

Not everyone has the luxury of a flexible schedule; I’m so lucky to be able to work at home and (mostly) design my own days. But I hope every one of you is able to carve out a few minutes to just breathe and be, to do some small thing that helps you find a bit of peace in the midst of your busy day. 

For more about stress management, visit nationalMSsociety.org/stress. 


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, February 19, 2013

From my side of the cane

Helen Marie Russon
 
Last week, I was flying back to Oregon after a family visit. At the airport, they started herding passengers with the familiar announcement: “We’re now beginning early boarding for those who have small children or who need a little extra time… ” I used to ignore it and board with everyone else, until I realized that this not only made things more difficult for me, but for others, as well. So I grabbed my cane and started walking towards the plane.

I soon became aware of another passenger moving in quickly behind me. As is my usual practice, I stepped aside and said, “Go ahead.” But instead, the passenger loudly exclaimed, “No, my wife walks just as slowly as you do. You take all the time you need!” 

I said, “Really, please go ahead of me,” and he replied, “No, you’re doing just fine!” I tried one last time, as I didn’t want to rush or be pushed, telling him, “I would prefer it.” He bellowed, “No! My wife walks just as slowly as you do. You’re doing great – and there are people coming up behind us.”

I shot back, “And do you tell your wife whether or not she can ask people to walk ahead of her?”  Needless to say, our conversation abruptly ended at that point and we (a group now) all somewhat awkwardly made our way towards the plane.

By the time I was in my seat, I was decidedly “exercised.” I alternated between seething about what a jerk he had been and berating myself for having snapped at him in the first place. After all, he had meant well … hadn’t he?

What I had done was give him power he wouldn’t have had otherwise, which made me feel worse than I would have felt, otherwise. I suppose I could have educated him a little about how things look from my side of the cane, and maybe he’d treat the next person like me in a more respectful manner. It’s just as likely, however, that he wrote me off as being hostile and ungrateful. (And as for what his wife might have thought of all this, please forgive me if I refuse to go there!)

Psychologists have long realized that the concept of “feeling better by venting” is often a fallacy. Letting one’s emotions loose may actually have a reinforcing instead of releasing effect. In this vein, I am struck by the difference between how I felt at the airport and how I felt when I took legal action after my employer had denied my request for reasonable accommodation. Both instances caused me some agitation at first, but the difference is that with the latter, I felt completely at peace afterward. It reminds me that everyone - particularly those of us who must conserve our energy – are generally better off picking and choosing our “cane mutinies.”




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.
 

Thursday, February 14, 2013

Love: Simple and complex


Douglas Winslow Cooper 

I told my wife, Tina Su Cooper, that love is both simple and complex. It seemed a contradiction, but her deep understanding of music—she had been a highly accomplished pianist before her diagnosis with MS—made this idea clear to her once I used a musical metaphor.

Consider a musical note: middle C, for example. Its fundamental frequency is 262 cycles per second. That pure tone can be produced electronically, but musical instruments produce something different. They add to this fundamental frequency higher-frequency harmonics, over-tones.

A stringed instrument will add different proportions of these higher-frequency tones to the fundamental tone than will be added by a horn or a reed (an oboe or clarinet) or a xylophone, and most people can distinguish one type of instrument from another based on these contributions to their timbres, even though each instrument is playing predominantly the note middle C.

A violin produces music through the partnership of the bow and the strings. True musical aficionados can distinguish between a high-quality violin, an Amati or Stradivarius, and a run-of-the-mill instrument. All pianos produce notes as hammers strike strings, but Steinway or Kawai pianos produce more pleasing notes than lower-quality pianos. The great and the not-great instruments can both produce middle C notes, but the best add highlights that the lesser will lack.

Together, in love, two humans can produce amorous music. The special characteristics of each partner contribute to the over-tones that make a unique love more or less beautiful. The changes that life produces in each partner add complexity. The music evolves.

Just as aging deepens the sound from a classic instrument, so the challenges that life presents us can deepen us and enrich the music we make together, loving and caring for each other.

You see, love is both simple and complex.

Douglas Winslow Cooper, Ph.D., a retired environmental physicist, lives in southern New York State with his beloved wife, Tina Su Cooper, a former editor at the Encyclopedia Britannica and mother of two. Tina was first diagnosed with MS in 1981 at the age of 37, and she has been quadriplegic and ventilator-dependent at home for almost eight years. Tina is the central figure in Dr. Cooper’s book, Ting and I: A Memoir of Love, Courage, and Devotion, available from Amazon. Barnes and Noble, or their website, tingandi.com. 

Wednesday, February 13, 2013

MS helped me learn to stop worrying. Well, mostly.

Jennifer LaRue Huget

I used to be the world’s biggest worrywart. I could work up a good worry over anything, from the size of my thighs to the demise of mankind.

I’d like to say that’s all stopped. Alas, I still worry. But being diagnosed with MS in 2001 made me reconsider the role worry plays in my life.

Until then, I used worry as a kind of talisman, figuring (not quite consciously) that the act of worrying about something actually protected against that thing. Worrying would, in my superstitious mind, ward off any bad thing I thought to worry about.

I worried about contracting all sorts of dire diseases. But it never crossed my mind to worry about MS. So, while I was busy fretting about afflictions such as swine flu and cancer, MS snuck up and bit me in the butt.

I was terrified when I learned (after an MRI and a lumbar puncture) that I had multiple sclerosis, a disease I knew absolutely nothing about. So much for the protective power of worry.

Information, not superstition, is of course the best defense against blind fear, so I sought it where I could. Unfortunately for me, that meant surfing the Web.

Back in 2001, online information about MS was far more scarce, and far more scary, than it is today. I sure wish this blog had been there for me; I would have so appreciated the chance to see that real human beings like myself can live rich, happy lives with MS. Instead, one Website after another painted a grim, depressing picture of what likely lay ahead for me, largely because therapies that would help make MS a more manageable condition had only recently become available and hadn’t yet had a chance to alter the course of many people’s disease.

What the Internet failed to provide, my wonderful neurologist delivered. He helped me find the right therapy and got me started on it immediately. He spoke to me kindly but not condescendingly, telling me what I needed to know about the disease and its management. Perhaps most important of all, he helped me maintain a sense of humor about my situation.

My neurologist, my wonderful family and friends, my daily injection, and that sense of humor have all served me well over the dozen years since my diagnosis. I am so lucky and grateful to be able to walk the dog, go to the gym, ride my bike, do yoga for hours on end. I have a fulfilling job and a happy life – none of which I take for granted.

Today, with new therapies and improved understanding of how MS works, the outlook for many is better than it was even a decade ago, and Websites such as that of the National MS Society can offer plenty of helpful, even cheering, information for the newly diagnosed.

I am thrilled to have the opportunity to share my MS experience with others through this blog, and I hope that newly diagnosed people in particular will find encouragement in what I and my fellow bloggers write. And, to help ensure that new therapies will continue to be discovered and made available to people with MS, I am proud to declare myself an MS activist!

What does being an MS activist mean? Being an MS activist means that I will take every opportunity to stand up, tell my story and drive change. Hear that sound? That’s me, knocking on wood. I know that my disease could worsen, that my future could become far more problematic than my past twelve years have been.

But, you know what?

I’m not going to worry about that right now. I’m going to use my voice to make a difference.

 


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.