Identification

Laurie Clements Lambeth

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

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

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

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

There have been times I’ve wished for that yellow card again. I never know when I might appear drunk. No card to hand over, it has become a worry of mine, as it most likely is for many people with MS, that I might be cited for public intoxication and absolutely fail the heel-toe walking exam. I don’t drink much for a variety of reasons. Alcohol has intensified or brought back certain sensations like that shot of lightning running down from my head to my extremities when tilting my neck forward: “L’hermitte’s Sign.” Whenever I felt that jolt zip through me after a long absence, I knew to put my wine glass down. That unsteady gait and lightheaded feeling, already features young drinkers strive for, just blur the lines between pleasure and symptom too much. When I nearly fall climbing into the hairdresser’s chair, why add to the sensation? When I stagger to catch my balance and someone says, “Whoa! You okay there?” I imagine they are thinking I’ve had a fun evening. Or that I have a problem. Which I do have, just not the problem they’re thinking of. 

 

Growing up in California, I never lived through a particularly violent earthquake, although I have lived through many and prefer their randomness to the looming doom of hurricanes and tornadoes. The closer the epicenter, the more jolting an earthquake could feel. Most of the earthquakes I experienced were usually far enough away to soften to ripples. I actually enjoyed them. Water splashed out of pools; the bed swirled. During one legendary earthquake when I was a baby, my mother says I stood up in my crib, held the railing, laughed and bounced. Like a ride at Disneyland, perhaps, but far more damaging. And like MS, the damage is sometimes easy to ignore, subterranean.

 

The fault lines of my brain and spine swell and scar, and I happily bounce along. What else could I do? Hide beneath a table all my life? Brace myself in a doorway? It would be a lie to say that MS has not shaped me, become part of me. Sometimes I wonder at what point I first acquired the disease. Was my yellow card waiting for me all along, softening through childhood? My identity is as tied to MS as it is to earthquakes, the Pacific ocean, my broken nose, my knocked-out teeth. Why worry about a little staggering?  

 

 

Laurie Clements Lambeth’s MS diagnosis at the age of seventeen brought her to poetry. Her first book Veil and Burn (University of Illinois Press, 2008) was selected for the 2006 National Poetry Series. Currently at work on her second poetry collection and a book of creative nonfiction about MS, she also teaches in the Medicine and Society program at the University of Houston, where she earned MFA and PhD degrees in Creative Writing. To learn more about her work, please visit www.laurieclementslambeth.com. 

Planning for the Long Term: Taking Action Today

Michael Ogg

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

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

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

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

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

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

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

Enough Already.

Katie Jennings

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

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

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

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

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

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

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

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

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

Jody Devere

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

But there are some things we can't prepare for, or protect our children from, such as devastating illnesses. Sometimes, our babies grow up safe and sound, and we still find ourselves taking care of them later in life. In that case, we want to ensure they are comfortable and looked after, and do our best to keep life as normal as possible when it might feel out of our control.

Case in point: Multiple Sclerosis 

My son Joe, now 40, has been fighting MS since 2002 and has a spinal cord injury due to a car accident in 2005 related to his MS. Joe currently has primary-progressive MS. Joe’s biggest challenges are staying out of the hospital and free from infections -- and learning to use his new power wheelchair.

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

I have come to learn that the challenges of MS affect the entire family. I'm sometimes overwhelmed by the gravity of the disease and the horrible impact it's having on my children, in fact, on our entire family.

Being a caregiver to a person with MS can be a challenge.

Joe was hospitalized from December 2012 to February 2013 due to a major exacerbation that caused many complications and took away much of his independent living skills. Since then, I have joined Joe's wife Rosanna to become part of Joe's 24/7 caregiver team, and have even learned to be a pureed diet gourmet cook for him.

Rosanna recently won the "Caregiver of the Month" honor from Healthy Women. She is an avid snow boarder and together she and Joe have formed the non-profit foundation Threus.org to help others with spinal cord diseases go skiing, surfing, kayaking, and even white water rafting. Prior to his recent exacerbation, Joe was an enthusiastic paraplegic skier and skydiver, and as soon as he is stable again, the two are planning to scuba dive together. It's an important goal to Joe, who values and wants his independence back.

Educating, Donating, Working Together to Overcome Multiple Sclerosis

I would trade places with my children in a heartbeat. However since that's not possible I will fight to find every resource to help them and help fund research to find better treatments and hopefully one day a cure!

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

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

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

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

 

 

 

 

The looming neurologist shortage

Jennifer LaRue Huget

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

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

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

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

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

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

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

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

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

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

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.