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.
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
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?
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.
I’ve been writing, and thinking, about self-advocacy a lot lately. I blogged last week about how simply becoming better informed about issues facing people with MS can be a first step toward advocating for oneself.
I wrote that I don’t have a lot of experience as a self-advocate when it comes to managing my life and my condition. But on further thought, I have recognized one big area in which advocating for myself – by making sure I schedule time to exercise every day – has paid off in a big way. I have placed physical activity at the top of my daily to-do list. Making sure everyone around me recognizes and respects that has taken a bit of effort over the years.
When I was diagnosed, in 2001, lingering doubts remained in some experts’ minds as to whether it was advisable, or safe, for people with MS to engage in physical exercise. It’s hard to believe nowadays, but people with MS were once cautioned to refrain from physical exertion for fear it would exacerbate their symptoms or even hasten the progress of their disease.
But my instincts – and my own neurologist – told me otherwise. I simply knew that running, riding my bike, taking a hike, swimming and (when eventually I discovered it, yoga) made me feel better, stronger, more in control. It might have been easier, in a way, to just sit around on my duff. But my body felt compelled to keep moving.
I was also inspired by the former Olympic skier Jimmy Heuga, who was diagnosed with MS in 1970, when he was 26 and at the peak of his professional skiing career. Though doctors recommended he stop skiing, he didn’t. Heuga, who died in 2010, was a pioneer in helping the general public and physicians understand the benefits of physical exercise to people with MS.
Of course, it’s now widely accepted that physical activity can be enormously helpful to those of us with MS. Appropriately selected exercise can build and maintain muscle strength, coordination and balance. For those whose symptoms are heat-sensitive, alternatives such as swimming or choosing cool environments to exercise in can make physical activity more comfortable.
The National MS Society recently posted on its website a link to a useful article about exercise and MS; aimed primarily at African Americans with MS, the information it offers – particularly its long and varied list of exercise options – is applicable to all of us. The article wisely reminds us to check in with our physicians before embarking on a new exercise routine, just to make sure it’s a good fit.
One fun mode of exercise (one that might not even seem like exercise at all!) is the video game Dance Dance Revolution (DDR), in which on-screen directions guide you through a complicated dance routine. The level of difficulty can be adjusted to accommodate any skill level (thank goodness for me; I’m terrible at DDR!). A studybeing conducted at The Ohio State University Wexner Medical Center is examining whether, for people with MS, DDR can lessen the cognitive and physical impacts of the disease.
According to a press release about the study, “In the ongoing trial, participants exercise using DDR three times a week for eight weeks. The patients’ cognitive functions are tested at the beginning and end of the trial, and functional and structural magnetic resonance imaging is used to detect brain circuitry changes.”The release quotes research team member Nora Fritz as saying, “DDR requires a lot of cognitive processing. Players must look at a screen and time their movements to the arrows on the screen…. Incorporating DDR into standard MS treatments has the potential to improve balance, walking, cognition and motivation.”Those potential benefits aside, when I’m doing DDR – or running, walking, riding, or doing downward-facing dog – I try to concentrate on how good it feels to move and how much fun life can be. Breathing hard, sweating, and using my muscles are things I do for myself to keep my body and mind healthy. They are also things I have learned never to take for granted. Nor do I take for granted the vital role exercise plays in managing my MS. That’s why I insist on taking time to get out and get moving every day – even when I have to assert that need as a top priority. Learn more about exercise and MS at the National MS Society’s Exercise page.
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 Jimmosettlement 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.
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.
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.