Tuesday, April 30, 2013

Squeaky Wheels

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, Medicare and Medicaid

I started being an MS activist this week over my health insurance coverage. My neurologist had wanted to try IVIG infusions 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 IVIG for 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.

Thursday, April 25, 2013

Menses and MS

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.

Friday, April 19, 2013


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.

Tuesday, April 16, 2013

Annette Funicello’s Good Example

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.

Wednesday, April 10, 2013

The Tao of Mr. Hall

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.

  1. “Life is dukkha.”
  2. “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 

Monday, April 8, 2013

“Sexy” MS Research

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 donations to 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.

Wednesday, April 3, 2013

New pill on the block

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 here and 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.

Tuesday, April 2, 2013

Not Just Clumsy

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.