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Saturday, April 18, 2015

Biogen to Focus on RRMS Disease Management, Treatment at Upcoming Conference

Biogen to Focus on RRMS Disease Management, Treatment at Upcoming Conference

Biogen plans to present new clinical data at the 67th American Academy of Neurology (AAN) Annual Meeting in Washington D.C., April 18 – 25, 2015, including numerous presentations focusing on multiple sclerosis.  In a company press release, Biogen stated “At AAN, we will feature new scientific data, including research highlighting the efficacy and favorable safety profile of TECFIDERA, the most prescribed oral medicine for relapsing MS in the US.”
shutterstock_173216819According to Kate Dawson, vice president, US Medical Affairs “Biogen is committed to exploring ways to transform the care of patients living with MS and other neurodegenerative diseases both through its broad portfolio of MS therapies and extensive pipeline, as well as innovative company initiatives. At AAN, we will feature new scientific data, including research highlighting the efficacy and favorable safety profile of TECFIDERA, the most prescribed oral medicine for relapsing MS in the US.”
TECFIDERA is an oral medication for relapsing MS. The medication has received approval in the United States, the European Union, Canada, Australia and Switzerland.
Biogen also plans to present other data regarding patient care of people with MS, and presentations will include discussions of the current “state of MS” and will highlight why patient-healthcare provider interactions are so important.
Overall, the company will present the following MS data:
1) Emerging approaches to MS management
2) Tecfidera
  • Clinical Efficacy in Newly Diagnosed Relapsing-Remitting Multiple Sclerosis Patients with Highly Active Disease
  • Long-Term Efficacy of Delayed-Release Dimethyl Fumarate for Relapsing-Remitting Multiple Sclerosis According to Prior Therapy
3) Tysabri
  • Disease Course in Multiple Sclerosis (MS) Patients Switching from Fingolimod to Natalizumab
  • Natalizumab-Treated Patients with Multiple Sclerosis Have Low Rates of Brain Volume Decrease and Low MRI Disease Activity
4) Plegridy
  • Long-Term Safety and Tolerability of Peginterferon Beta-1a
  • Long-Term Efficacy in MRI and No Evidence of Disease Activity Outcomes in Patients with Relapsing-Remitting Multiple Sclerosis Treated with Peginterferon Beta-1a
5) Zinbryta
  • Daclizumab HYP Versus Interferon Beta-1a in Relapsing-Remitting Multiple Sclerosis
  • Safety and Tolerability Results
6) Anti-LINGO-1
  • Evidence of Remyelination with the Anti-LINGO-1 Monoclonal Antibody BIIB033 after Acute Optic Neuritis 
  • Efficacy Analysis of the Anti-LINGO-1 Monoclonal Antibody BIIB033 in Acute Optic Neuritis
Anti-LINGO-1 is a medication that restores myelin — a fatty substance that facilitates nerve cell impulses by wrapping around them and providing insulation. Recent trial results indicate that anti-LINGO-1 could help to repair the damaged visual system.
RENEW is one component of Biogen Idec’s program to develop anti-LINGO-1, which includes the SYNERGY multiple sclerosis trial. SYNERGY is an ongoing, separate Phase 2 study of anti-LINGO-1 in people with relapsing multiple sclerosis. Biogen Idec expects results for the SYNERGY trial in 2016.
The presentations underscore Biogen’s continuing commitment to treating MS, using multiple therapies and approaches. At this particular conference, Biogen will be focusing predominantly on the Relapsing-Remitting form of the disease, which the majority of MS are diagnosed with.

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Thursday, April 16, 2015

FDA Approves Generic Multiple-Sclerosis Drug by Novartis’s Sandoz and Momenta

Momenta shares jump on approval of a version of Teva’s top-selling drug, Copaxone

The U.S. Food and Drug Administration approved the first generic version of Teva Pharmaceutical’s blockbuster multiple-sclerosis drug Copaxone, although it remains unclear when the copycat version may come to market.

The generic, known as Glatopa, was developed by Novartis AG’s Sandoz business and Momenta Pharmaceuticals Inc. Sandoz is evaluating the timing of the launch, Momenta said in a news release.
Shares of Momenta jumped 6.1% Thursday to $17.08.

Copaxone, an injection for multiple sclerosis, is the company’s most profitable and top-selling product, according to analysts. Teva—which is known mostly for selling generic drugs—reported $4.2 billion in revenue from Copaxone last year, representing 21% of the company’s overall revenue.
Earlier this year, the U.S. Supreme Court backed a 2011 decision that ruled that Teva’s patent on Copaxone didn’t expire until September 2015.

Denise Bradley, a spokeswoman for Teva, said Thursday that the company has acknowledged for some time that a generic version of Copaxone could enter the market and has planned for it.
Analysts at Sanford C. Bernstein agree, saying “Teva has been quite realistic about the risk to Copaxone.” Still, Teva shares fell 3.8% to $63.49.

Sandoz said MS affects about a half-million individuals in the U.S. and that about half of those diagnosed are currently being treated. Glatopa is indicated for patients with relapsing forms of MS, including those who have experienced a first clinical episode and have magnetic resonance imaging features consistent with the disease.

Write to Lisa Beilfuss at


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Multiple Sclerosis News TODAY - Clinical Trial Updates Notification Program

Clinical Trial Notification Program


Many readers of MS News Today have reached out and urged us to do more to bring additional awareness about clinical trials applicable to the MS patient community. In response, we have created a new Clinical Trial Notification Program that helps us match individuals directly to relevant clinical trials based off of their profile information. For participants in our clinical trial notification program, if your profile is a match, we may reach out directly to inform you of a clinical trial that might be specifically relevant to you.

Correspondence between MS News Today and our program participants is strictly confidential and subject to our Privacy Policy. We do not share your personal information with third parties except when you have explicitly provided us permission to do so and agree that we can share such information on your behalf. We will not use, sell, or assign your email address for any purpose other than to communicate with you about clinical trial services.

If you are interested in participating in our Clinical Trial Notification Program, please click the button below and complete a short questionnaire. If we identify a trial that your profile is a match for, we will communicate with you via email informing you of the opportunity and will provide information on the sponsor company and trial protocol. With your consent, we will then forward your information to a clinical trial study site in your area for review.

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Tuesday, April 14, 2015

Experimental multiple sclerosis therapy stops disease in its tracks

Ottawa hospital gets $4.2M grant to support clinical trial for mesenchymal stem cell therapy

CBC News Posted: Apr 13, 2015 

Alexandre Normandin, who is a practising physician, says after being diagnosed with MS he gained more empathy for his patients.
The Ottawa Hospital and the University of Ottawa have received a $4.2 million grant to support a clinical trial for stem cell therapy targeted at multiple sclerosis patients.
One Pointe-Claire man says he knows from personal experience that the treatment — mesenchymal stem cell therapy — could give someone with MS a new chance at life. 
Alexandre Normandin was diagnosed eight years ago, in his third year of medical school at McGill University.
He said what started out as a little numbness on his left temple, turned out to be rapidly progressing MS. 
"The way it was going, it wouldn't be surprising, within months [or] years, to wind up in a wheelchair," he told .CBC's Daybreak host Mike Finnerty.
When he found out about an experimental bone marrow stem-cell transplant at the Ottawa General hospital in 2008, he didn't hesitate to sign up. 
The treatment was risky — Normandin had to go through 15 days of chemotherapy in order to completely wipe his immune system and eliminate the mutation that caused his MS. 
But it worked.
Years later, Normandin runs his own medical practice.

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Dr. Oz: Montel Williams challenges multiple sclerosis with diet and supplements

Montel Williams talks about MS.
Montel Williams talks about MS.
Photo by Mark Wilson/Getty Images
Montel Williams considers himself a survivor. And, as he told Dr. Mehmet Oz when he visited his talk show on April 13, evenmultiple sclerosis couldn't stop him from achieving his goals.

Williams advocates staying hydrated with coconut water and smoothies. But not just any smoothies will do. He recommends blending fruits and vegetables such as pineapple, watermelon, blueberries, apples, bananas and spinach.

In addition, Montel credits supplements for boosting his energy and relieving pain. He uses 100-300 mg of chlorophyll and 1000 IU of vitamin D each day. Chlorophyll also can be sourced from leafy green vegetables, fresh green juice drinks, wheat grass or spirulina.
B12 also is a key component of Montel's program. While he takes injections, Dr. Oz suggests dietary sources or supplements. In addition, Three Root tea and five cloves of garlic daily are important parts of Montel's "Fountain Of Youth" energy program.
Montel isn't the only celebrity to battle multiple sclerosis. Country music star Clay Walker also struggles to control his MS, reported ABC News on April 12.

"When I was dealt that blow I was devastated being diagnosed with a debilitating disease," admitted Walker. But that was 19 years ago, and oh, how times have changed for the singer.


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LEARNING about MS Relapse

Can you recognize an MS relapse?

If you suspect that you may be having a relapse, the most important thing you can do is make an appointment to talk with your doctor as soon as possible. In the meantime, there are many common, recognizable symptoms that you can monitor and then share with your doctor to help determine if you are having a relapse. At, you have a resource for learning more about MS relapses, the accompanying symptoms, and how your MS relapse may be resolved.
Know the symptoms of an MS relapse.

  Discover more symptoms of MS relapse

Relapses can be unpredictable. Relapse symptoms can vary from person to person, and your symptoms may not be the same for each relapse. But there are questions you can ask yourself to help determine if you may be having a relapse.
Learn more about recognizing an
MS relapse.
Learn what questions to ask to determine if you may be having a relapse with the Acthar for MS Relapses Brochure

If you are having a relapse, Acthar may be able to help you recover. Studies have shown ACTH, the main ingredient in Acthar, to be effective in speeding recovery from MS relapses in adults.
Know what you can do about a relapse.
Find out how H.P. Acthar Gel (repository corticotropin Injection) can help you recover from an MS relapse

Patient Indication Statement
Acthar is a prescription medicine indicated for adults with acute relapses or flares of multiple sclerosis (MS). Studies have shown H.P. Acthar Gel to be effective in speeding recovery from an MS relapse. However, there is no evidence that Acthar affects the ultimate outcome or natural history of the disease.

Please see Important Safety Information below and full Prescribing Information.

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The 2015 edition of MSAA's MS Research Update

The 2015 edition of MSAA's MS Research Update provides a comprehensive overview of the research findings on the 12 FDA-approved disease-modifying therapies, as well as study results on many experimental treatments currently under investigation. Directions for future research are also presented in areas such as stem-cell research, biomarkers, genetic studies, and more.
In addition to the exciting research aimed at relapsing forms of MS, several studies are also looking into the treatment of progressive forms of MS. To assist individuals interested in learning more, trials with progressive forms of MS have been highlighted in bold for quick identification.

Please also forward this email along to anyone who may be interested in this information.

Read MSAA's latest MS Research Update.

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Kineta’s dalazatide (formerly ShK-186) has a mechanism of action broad enough to treat many autoimmune diseases

Grant Awards

Kineta’s Autoimmune Program is supported by the National Institute of Health.

PI: Shawn P. Iadonato
Listed as: Funding Mechanism, Title, Application #, Collaborators (if any)

Read more, here

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A Stranger in Strange Lands - written by: WheelChair Kamikaze

Wheelchair Kamikaze

WOW! - What a fabulous writer!!  - Stu's Views

Posted: 14 Apr 2015 
Marc Stecker

Way back in the summer of 1989, just about a month before my 26th birthday, I unintentionally found myself living in South Florida. An unfortunate confluence of bad decisions on my part, ill will on the part of others, and an ample dose of plain old rotten luck landed me in an environ in which I never intended to land. Without getting into the gory details, suffice it to say that for me Florida was a refuge of last resort, a place I had visited fairly often (I’d long had family living there) but one which I’d never even considered a spot in which I might one day actually reside. In fact, if asked just a few months before if my living in Florida were even a remote possibility, I would have looked at the questioner as if they were totally insane. I knew on a very basic level that the Sunshine State and I would never make for a comfortable fit, but lo and behold, there I was, an accidental Floridian, ill-suited to the place by any number of measures.

Now, there’s nothing inherently wrong with South Florida; some people find the locale a paradise. I’m just not one of those people. Before arriving in Fort Lauderdale I had spent my young adult years living a quirky Bohemian existence, primarily in Boston but also for a short time in my native New York City. I’d never held a full-time job and had inhabited an eccentric and lively subculture of writers, artists and musicians, or at least wannabe writers, artists and musicians, that formed what sociologists refer to as an urban tribe, with its own customs, values and interests that quite often veered significantly from those of the mainstream.

In both Boston and New York such enclaves were woven into the fabric of city life and like-minded spirits abounded. Fort Lauderdale, though, held little in the way of such a community. Either by nature or nurture (or both) I was temperamentally completely at odds with the place. Whereas I’d always deeply appreciated the muted beauty of a cloudy day, Florida exalts in its status as The Sunshine State. Fort Lauderdale is renowned for its beaches; I detest the feeling of sand between my toes. If Florida is Ying, I am Yang. Despite Zen ideals, this particular combination of Ying and Yang did not produce harmony, but instead a feeling inside me of perpetual discord that eventually led to a crisis of spirit.

Despite my ongoing sense of otherness I remained in Florida for about 10 years, a fact I still have difficulty reconciling, particularly to myself. When I arrived in Florida I was pretty much out of options and had hazy plans of staying maybe 6-12 months. And then I suppose life just took over. I halfheartedly stumbled into my first ever full-time job, working as a low-level video producer for a local cable television company, a quirky enough position in which I had lots of fun but made very little money. In spite of my always feeling like a piglet among puppies I eventually managed to fashion an active social life and find friends and lovers, and though I grew extremely close to some of them, many were quite different from the folks I naturally gravitated to up North. This taught me a lesson that remains one of the few net positives that I took away from my time in Florida: to not prejudge people based on externals alone. Given half a chance, people of all stripes can be full of delightful surprises.

After a few years, my oddball job working for the cable company led to a more lucrative and much more structured position in a marketing company, and that to yet another career builder in an even more stifling corporate environment. While this evolution provided financial comfort, it also shoehorned me into a day-to-day lifestyle that only a few years earlier I had adamantly and vociferously forsworn. At times I barely recognized the clean-cut young man knotting a necktie who looked back at me in the mirror, feeling as if I were living a life deep undercover or, worse yet, as a feckless imposter. Beneath the surface my native eccentric impulses still simmered, but somewhere along the line I had allowed myself to become a passionate man living a passionless existence.

Along the road to this begrudging semi assimilation I lost track of who I once was, the essence of “me” that existed still at the core of my being. This created a spiritual and psychological void that led to terrible cognitive dissonance, manifesting as what I can only describe as a desiccation of the soul. As the years wore on I grew increasingly discontented but found myself caught in a self-imposed catch 22, shackled by the responsibilities of the very lifestyle that was causing me such massive dissatisfaction. The mental blinders I developed in a misguided attempt to stay the course served also to keep me from seeing a way out.

During my last few years in Florida I started experiencing a variety of strange physical symptoms that subsequently turned out to be a subtle presage of the physical crisis to come. Finally, after nearly a decade, the breakup of a long-term romantic relationship provided me with some long overdue escape velocity and I made my way back to New York. Despite the tropical beauty of parts of South Florida, my favorite view of the place turned out to be the one in my rearview mirror.

Arriving back in New York felt like pulling on a favorite pair of well broken-in jeans, once thought lost but happily rediscovered. Before long things started to almost magically fall into place; I reconnected with dear old friends, landed a promising high profile job in a very prestigious but funky outpost of a worldwide mega-media company, and, just a little over a year after returning to NYC, met the marvelous woman who I would eventually marry.

Things seemingly couldn’t have gone much better until – after four years back in New York and just weeks before my first wedding anniversary – the nagging physical symptoms that began back in Florida finally became too pronounced to ignore and I was soon diagnosed with progressive multiple sclerosis. Even though I’d had a sense for years that things weren’t quite right physically, nothing could have prepared me for the maelstrom that would soon erupt within and around me as I was forced into the world of creeping paralysis, once again a stranger in a very strange land, limping down a path for which no roadmap existed. My discarded crisis of spirit was now replaced by a crisis of body.

Despite the best efforts of me and my doctors my disease progressed quite rapidly. Less than four years after my diagnosis I was forced to quit work and go on long-term disability. About a year and a half later I found myself in a wheelchair, the right side of my body withering and my left side beginning to weaken. Quite unexpectedly, these developments allowed parts of me that had been buried for decades to take root and blossom. The gaping holes in my life left by the excision of work and social obligations were soon filled by pursuits and passions that had for far too long been subjugated by the realities and responsibilities of adulthood. Further, my attempts to save my own backside by learning as much as possible about my disease and the ongoing research into treating it injected a sense of purpose and glimmer of light into this murky and frightening new world.

Not to say that my getting sick was in any way fortuitous or – gack! – a blessing. But my increasing disabilities served to strip my life bare as I became less and less able to utilize the trappings of the land of the healthy, rendering an ever-increasing list of everyday objects little or no use to me, luxuries and perceived necessities that had served not too long ago as balms providing superficial comfort and satisfaction, particularly during my wayward days lurching through life in South Florida.

Slowly a curtain of artifice began to lift, and looking at the healthy world from the outside in revealed the synthetic nature of the forces driving most people’s lives; the unappeasable wants and desires conjured by insatiable consumerism, the intentional discontent fostered by a social order that thrives on keeping its populace in a perpetual state of simmering dissatisfaction. During my Florida days these machinations led me down a primrose path, but in my increasingly compromised physical state I began to see with startling clarity that the frenzied world of imposed needs and longings that I once inhabited depends on no thing – no object, person, or sense of self – ever being good enough. No wonder antidepressants are being gobbled by the ton.

Paradoxically, the crisis of body that came all too soon on the heels of my Floridian crisis of spirit allowed that spirit to take root and blossom, freed by unfortunate circumstance to flourish in the absence of any preconceived notions of success and failure. Perhaps the most maddening aspect of this creeping paralysis is that it very likely will never allow me to fully utilize the lessons learned, to put into action in that ever receding land of the healthy the bits of wisdom and insight garnered by being forced to endure what I once believed to be unendurable. Has the experience of prolonged debilitating illness left me unsuited for a life back among the healthy? Now there’s a problem I wouldn’t mind facing, to once again be a stranger in that strange land.

As for the world I now occupy, this truly bizarre land of multiple sclerosis, I intend to always be a stranger within. Although so many of my fellow inhabitants are among the most inspiring people I’ve ever come to know, I will not – I cannot – accept citizenship in this nation. If I was haphazardly thrust out of my element by my never intended move to Florida, I’m a willful alien in this place. No MS green card for me, thank you.

And so I find myself a stranger in two strange lands, the worlds of the sick and the healthy. Maybe it was my destiny to always be the stranger, or perhaps I’m just strange. In either case, vive la diffĂšrence!

Well, just as long as I don’t have to vive it in Florida…

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YES! YES! YES! Guided Meditations To BE The Love We Wish To See In The World

YES! YES! YES! Guided Meditations To BE The Love We Wish To See In The World cover art

by Michelle Alva

Dear Friends,

I am so excited to share with you these new YES! YES! YES! Guided Meditations which are ways to quickly and easily raise your vibration to align more love, worthiness, forgiveness, romantic love, and joy. I especially love the one on I AM WORTHY, as this is something I struggled with most of my life, which led me to become an over-achiever and burnt out at an early age, and it has inspired me to create SOLUTIONS for us to create optimal energy, health and vitality!

Click HERE to listen for FREE, and if you like them there is a fee to download them onto your phone or laptop!

Are you feeling a sense of re-birth and renewal as I have been and my clients too?

I have created an exciting new 7 hour course to teach individuals how to strengthen their intuition, our ability to channel divine healing energy, gain clarity, strengthen our self-healing abilities... so we may serve in an even higher capacity ourselves, people we love, and everyone on this planet! 

Michelle Alva image
Michelle AlvaMiami, Florida              
FOR further information on Guided Meditations, visit Michelle's website:

Disclaimer: MS Views and News / Stu's Views & MS News, does not endorse any product or modality found on our pages but does recommend for you to confirm with your healthcare provider

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Sunday, April 12, 2015

"The Spoon Theory" - Spending Energy Mindfully

This was shared to me by a close-Friend / MS Patient - and I want to share this with you as I am sure that many of you will identify with this. Keep this going and share with others


The Spoon Theory

by Christine Miserandino

My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
Cartoon image of Christine Miserandino holding a spoon
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of “spoons”. But when you have to now plan your day, you need to know exactly how many “spoons” you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn’t even started yet. I’ve wanted more “spoons” for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your “spoons” are gone, they are gone. Sometimes you can borrow against tomorrow’s “spoons”, but just think how hard tomorrow will be with less “spoons”. I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on “spoons”, because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly “Christine, How do you do it? Do you really do this everyday?” I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared.”
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day’s plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count “spoons”.
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can’t go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said “Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted “spoons” and I chose to spend this time with you.”
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my “spoons”.
© Christine Miserandino
*We have English, Spanish, French and Hebrew translations of “The Spoon Theory” available.


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