Focus On Yourself At Least Once Every Day

Each New Year brings hope and a sense of optimism amidst a potentially gloomy season with brittle cold weather and often gray skies. It is a time to begin with a proverbial clean slate. A time to start fresh and improve something about your life — eat better, exercise more, spend less money, read more books, learn a new skill — practically any goal can become a New Year’s resolution.

But there’s something about resolutions — they’re hard to keep. Each January, many people make an effort to do something different and end up disappointing themselves when a month later their resolve has fizzled into the gray sky. It can be total resolution evaporation.

My suggestion to prevent the evaporation? Make only one resolution: Focus on yourself once every day.

Life presented many challenges to me in the past 9 months. It was a really tough year. As a result, I did not take care of myself as I should. I stopped exercising. I stopped going out and having a blast on my bike. I stopped caring what I ate. I focused simply on surviving and taking care of others.

Maybe you can relate. At some time in your life, perhaps you have fallen victim to ignoring your own needs too. It’s an all too common situation, no matter what the details of the circumstances are. What you and I need to do now is to find a way to begin to take care of ourselves without a total resolution meltdown.

Once I realize what I really need — to show myself kindness and love — I can find ways to do just that. It’s not an easy task, honestly, because I’m so programmed to take care of everybody and everything else first. But there’s always going to be something else to do.
Since my neglected needs are primarily physical, I have chosen a physical solution. Your needs may be emotional, social, recreational, or financial, thus your solution should match the corresponding need.


Here are the questions I asked myself in order to identify what I need to do to show myself kindness and love within my current circumstances.

Read this post in its entirety:

The Only Resolution You Need to Make

Remembering Life Before MS: What I Miss Most

My multiple sclerosis diagnosis took multiple years. It wasn’t a quick affair. Years separated early attacks, including five years between a case of temporary blindness from optic neuritis and the loss of the use of my left hand and arm which finally led to a diagnosis. During those years, my life was evolving as well.

Before MS, I was actively building a career as a freelance musician in the Washington, D.C., area. At one point, I was teaching a weekly schedule of 44 private students while also performing in at least two or three concerts each month. The demand upon my time and energy was tremendous.

Since MS, I have become a wife, writer, patient advocate, speaker, consultant, moderator, medical reviewer, and new Bike MS participant. I will always be a musician and still teach private lessons in my home studio. My schedule is just as busy as before, although I am engaged in different activities.

What I miss most:

Chest-thumping sounds

I miss the tremendous sensation of the sound waves produced by 100 other musicians on a symphony stage traveling through my body during a performance. The joy of listening to perfect harmony and stylistic precision up close and personal. The mix of overtones in the ears that stimulate the brain in a most satisfying way. There is nothing quite like it.

Now, I have difficulty with sudden sounds that feel like an ice pick to the brain.

Separation of work and home

I miss that satisfying feeling of coming home after a long day of lessons and/or rehearsals to take my shoes off, sit on the couch, and chill with some late night television. With clearly defined boundaries, both physical and mental, of what is work and what is not work, it is nice to feel the separation between activities.

Now, I work from home. As a writer and community moderator, I can be “at work” 24 hours a day, anytime of the day. I find myself with my laptop computer in my recliner toggling between projects for hours at a time. And with the potential cognitive problems associated with MS, it becomes difficult to stay focused on any one project.

Hiking and crunching leaves

As a graduate student, I lived not far from beautiful Brown County State Park in Indiana. Hiking was particularly fun during the autumn, when leaves of many colors covered the ground. The combined sound of rustling leaves in the trees and boots sweeping through blankets of leaves on the trail was particularly satisfying on a cool, crisp morning.

Now, I need to be able to see any obstacles on the ground or risk catching my toes on the tiniest of surface imperfections. Tripping on air has become one of my special talents since living with MS has impacted sensation in my feet. Walking on any path that is covered with leaves, stones, or debris poses an extreme tripping hazard.

Read this post in its entirety:
Three Things I Miss Most About Life Before MS

Preparing For My First BikeMS

In anticipation of our first year participating in BikeMS, here are some things I did to get ready.

To get ready for the ride, I still have quite a bit of training and conditioning to do. Not being a seasoned athlete, I realize that I need to be careful in how I approach getting ready. Here are some of the tips and strategies I’ve learned along the way.

• Get the right fit. For comfort, safety, and efficiency, your bike needs to fit your body and be adjusted to reduce physical stress and maximize the strength of your efforts. Go to a local bike shop for expert advice.
• Set realistic goals. Since I can’t already ride 30+ miles, I need to build up to that distance. I’m keeping track of my rides with a free phone app (e.g., Strava, MapMyRide) and attempt to increase my average ride by one to three miles each week.
  
• Schedule rest. Although it is tempting to think that riding every day will be the best way to prepare, it’s the wrong way to build strength and endurance. Rest days are necessary to allow your body to repair muscle and begin to compensate for the increased physical demand. TrainingPeaks, a free resource for Bike MS participants, emphasizes recovery days and the need for varied levels of workout intensities.
  
• Enjoy variety. It’s important not to do the same things every time you go out on the bike. Some training days should feature greater physical demands — increased elevation gain or sprints, for example — or easier, low-intensity spins that keep you moving but don’t wear you out. I like to alternate trails that present different challenges or easier sections.
• Focus on hydration and nutrition. It’s vital to stay hydrated before, during, and after workouts. The amount of water and enhanced sports drinks you may need depend upon your body, the environment, and your workout demands. The National MS Society offers basic information on hydration and nutrition to get you started.

Read this post in its entirety:
BikeMS: Setting Goals and Going the Distance

How Animals Help Us Cope With MS

As I was writing this evening, my gray cat Oscar jumped up on the arm of my recliner. He purred loudly and rubbed affectionately against my arm. Distracting me from my work, Oscar laid it on thick as he thanked me in advance for the tasty dinner he was about to receive.

Oscar is my multiple sclerosis (MS) buddy. He is my friend. He is one of three cats who keep us entertained and provide lots of laughs and affection. Oscar frequently joins Rob and me in bed after we’ve turned off the lights at night, and he is usually right at my feet when I wake in the morning.


Oscar is a gentle soul who seems endlessly thankful to be a part of our family. A skinny stray who showed up on our porch, he was starving for affection as much as for food. I fed him, but he always asked for pets before eating. One rainy night, he showed up bleeding at our house. It was all I could take. I brought him inside the house, and from this moment forward, he became a member of our family.

Read this post in its entirety:
My MS Buddies: My Cats

My Husband, My Caregiver

Although I am the one diagnosed with multiple sclerosis (MS), I am not the only one who lives with MS in our family. My husband, Rob, lives with MS, too.

As is common in many relationships, Rob and I take care of each other. We have a fluid give-and-take that helps to make our household function smoothly. For example, while I’m busy teaching music lessons, Rob will often prepare dinner after he gets home from work. I usually take care of laundry during the days.

More unique and special to our relationship, Rob has become excellent at watching out for the intervening effects of MS. If I start to get overheated in the summer, Rob will encourage me to get something icy to drink. Better yet, he often brings me something to drink without mention. If I begin to have a cognitive meltdown from sensory overload, he gently guides me to a less confusing, less stimulating environment, so that I can think straight again.


Watching out for me didn’t come automatically for Rob; it took time, practice, patience, and careful attention. The more we as a team have learned about how MS affects me, the better we become at ameliorating some of its effects. We become a stronger team in the process.

Read this post in its entirety:
My Husband, My Caregiver

From Couch Potato To Outdoor Cyclist

On the bike, I couldn’t ride for even two or three minutes without my legs feeling numb and spastic due to MS. So I decided to back off my efforts and count revolutions instead of minutes with 300 spins as my short-term goal (150 for each leg). If I cycled for 300 rotations at a steady, slow pace, it would equal about five minutes.

That was the beginning of my long transformation from couch potato to outdoor cyclist. During that first year, I slowly transitioned from counting revolutions to counting minutes to counting miles. I also started counting calories too. After a year, I lost 50 pounds and could ride for 45 minutes on the exercise bike and still feel good afterward.


I started to dream of riding a real bike again. But I hadn’t done so since college, and I didn’t have a bike. Many months later, I went shopping. The image of me trying out bikes when I hadn’t even been on one in many years was funny. I eventually chose one and began riding it short distances. Just like with the exercise bike, I started with small goals: down the street and back, one mile, two miles, 15 minutes, 30 minutes, and more.

Read this post in its entirety:
From Couch Potato to Outdoor Cyclist

Meet Jessica P in #RealMSProfiles

“Continue to plan your future regardless of MS.” — Jessica P., @JesswithMS

HC: Have you made any conscious lifestyle changes due to MS? If so, has it affected your quality of life?

Jessica: I made the decision not to further my education. I am only able to work so many hours a week due to MS and the permanent damage it has caused. MS has been a huge financial burden to our family [so] I chose my children's future over my own. I’m also unable to participate in every school event or sporting events. Heat and cold intolerance make it hard, as well as the overwhelming fatigue.

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#RealMSProfiles: JessicaP

Meet Krystina E in #RealMSProfiles

“Find joy and peace in the small things. Your spirit still needs to be nourished.” — Krystina E., RunningToStayAlive (Instagram)

HC: Have your goals changed since you’ve been living with MS? If so, how?

Krystina: Yes they have. I was planning on going into nursing. With cog fog, shaky hands, and now a wheelchair, that's no longer a good option. Instead, I'm working toward a career in software development.

HC: What words of advice do you have for others in managing day-to-day life with MS?

Krystina: Get a doctor, get on medication, and stay on it. A lack of insurance has made me progress really fast. Also try to find joy and peace in the small things. Your spirit still needs to be nourished.

Read this post in its entirety:
#RealMSProfiles: KrystinaE

Meet Bobbie G in #RealMSProfiles

“My biggest joy with multiple sclerosis is learning how to allow life to be life on life's terms.” — Bobbie G.

HC: How has MS impacted your life?

Bobbie: At first, I was extremely scared. For the first year of my diagnosis every ache, every pain, every sadness, I attributed to MS. The only person I knew with MS was an uncle who was bedridden and dying. So to me, MS meant a death sentence. But then, over the past six months or so, I lost four relatives to different illnesses and sudden deaths. That has really opened my eyes to living for the moment, with or without MS. Now, I’m on a really good disease-modifying therapy and have a lot of hope in my remission.

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#RealMSProfiles: BobbieG

Remembering Events in Life Based on Health Status

In looking back on things that have happened over the years. Some may say that “life happened” as it tends to happen for most anybody as the years go on. In our lives, it’s more accurate to say that “sickness happened.”

It seems clear in retrospect that the relentless onset of MS and RA over the course of 18 months, following five years of fluctuating symptoms (such as temporary blindness, heavy legs, painful feet/ankles, achy hands, etc), changed the course of my life irrevocably. Things began to be neglected.

There’s a virtual wall between how I was able to manage life pre-MS versus post-MS. It wasn’t until my mom and I were talking about things around the house that I realized - and truly and honestly acknowledged - that life has become punctuated by health events.

Read this post in its entirety:
Life Punctuated by Health and Sickness

Thank You For Reading! 1,000,000 and counting

When I started this blog in 2007, I had no idea where it would take me...literally across the globe.

I've met an amazing group of individuals who live with strength, beauty, and grace in the face of adversity. I've met professionals who are passionate about their work and want to improve the lives of people living with chronic disease.

The MS and RA communities are full of people who lift each other up and I'm pleased to be able to contribute to our collective body of support and knowledge.

Thank you for making me, and my blog, part of your journey as a patient, caregiver, loved one, or friend.

***This blog recently surpassed 1,000,000 page views counted since May 2010.***

Thank you for visiting and reading!!

Living with MS for 10-15 Years So Far

Fifteen years ago, I became blind. In under two days, I went from ‘something is just not right’ to ‘all I can see is solid gray.’ It was terribly frightening and I wasn’t sure what to expect for the future.

One thing I knew at that time was that I did not have multiple sclerosis because my brain was clear of ‘white spots’ or lesions. I also didn’t have a brain tumor. I could walk just fine, so I probably didn’t have neuromyelitis optica (NMO) either. This was before the blood test was available to look for NMO markers to make diagnosis easier, but I was to return to the neuro-opthalmologist if I had trouble.

It was a busy March concert season with performances and rehearsals scheduled on more days than not. My calendar was a mess of scribbled notes regarding where and when I had to be in specific locations for work. There was the Baltimore Opera, Fairfax Symphony, National Gallery of Art Orchestra, and other freelance gigs. All of that on top of the 30+ private music students I had at the time.

I was busy, to say the least, and didn’t have time to mess with physical weakness or logistical limitations.

Figuring out how to get around to where I needed to be took a little bit of time since I wasn’t really safe to drive long distances. I felt like I could manage driving the two miles it took to go from my apartment to the school where I taught and I arranged to carpool to rehearsals and performances.

The same day I reached complete blindness in the right eye, I was almost late to a rehearsal in Baltimore. I had been waiting in line for much too long to have blood drawn for testing to help determine what might be going on. I apologized to the contractor for my almost tardiness. In professional settings, if you are not 20-30 minutes early, you are late!

Did I explain what was going on? No. I kept quiet about my struggles except to my new carpool buddy and one fellow horn player. My colleagues and students were left in the dark about my new challenges. But looking back, I must have been a mess with steroid poof, dark eyes, fatigue, bumping into things, etc.

When I talked with my friend, the horn player, she told me that her mother has lived with MS for years. Bless her heart, my friend did not tell me anything which would have scared the living daylights out of me - although I wasn’t seeing half of daylight anyhow - when she could have. She spoke with the wisdom of someone who has loved someone with MS for many years. Thank you, Jennifer.

After my vision returned, I went on with life blissfully for several years. But when I began to feel numbness and tingling in my left hand and arm, and eventually lost use of the same, I knew that my luck had run out. I had not managed to escape the grips of multiple sclerosis afterall.

Ten years ago when I was once again referred for MRI scans, I knew what they would show. I knew that this time there would be ‘white spots’ or lesions. This time the answer would be clear. It was, but that didn't prevent me from needing a spinal tab and further MRI scans. All told, it still took another five months before the news became official - You have MS.

So now that I’ve been living with MS, officially, for ten years, I try to speak with the wisdom of my friend Jennifer. It’s good to share information and support with those who are facing diagnosis and an uncertain future. It’s also good to simply offer an empathic ear to listen to the fears and concerns of others.

Even those of us who have lived with this disease for many years still do not know what the future holds for us. Right now, my future looks good. I’ve found a treatment regimen which works and keeps me functioning at a high level. I will never be able to do many of the things I once did, but that’s okay. I’m doing many other things which I never dreamed of through advocacy and outreach.

Life is different than I had dreamed and was working towards 15 years ago. But I bet that is true for anyone, regardless of disease. Life is an evolving experience and we are here to discover a path and live it to its fullest.


Read this post in its entirety:

Anniversary of an Early Non-Diagnosis and Living a Fulfilling Life

Carnival of MS Bloggers #162

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

Suffering Disappears, Love Remains

by Meagan at Multiple Sclerosis, Motherhood, and other Traumatic Experiences

Do you ever have days when you feel like it has all become too overwhelming?

My grandparents, both in uniform during WWII

My grandparents were a living example of heroism and true love despite devastating life circumstances. Have you seen those movies with an unbelievable love story, overcoming all odds?

This is a true story.

When I feel weak, I think of them. When I feel overwhelmed with my lot in life, I think of them. When I want to give up, cursing the universe for the bad hand I was dealt, I think of them.

My grandmother with Bob Hope at the USO, 1940s, Hollywood, CA

Their story began on a Southern California beach in the 1940s, just after World War II began. It was love at first sight, according to my grandparents. My grandfather describes my grandmother as "the most beautiful girl he had ever seen." From that moment on, they hung onto each other through it all, never giving up on this commitment. They both joined the military during the war, my grandmother serving as a WAC, my grandfather in the Army.

Soon after, they married and started a large family, with 3 girls and 4 boys. My mother was the oldest girl, and took on a great deal of responsibility for her younger siblings.

This beautiful love story began to take a turn.

My grandparents on their wedding day, 1945

That beautiful image, that perfect wedding day....the meeting on the beach, the love that brought these two together. This is the foundation of a relationship that would truly stand the test of time, and the test of multiple sclerosis.

Sometimes, difficulties bring out the best in people. Sometimes it takes struggle to find out who we really are, and what we are truly capable of. My grandparents were about to experience that struggle first hand.

My grandmother began to experience new neurological symptoms, new emotional instability, and eventually full blown seizures. The health history of my grandmother is somewhat unclear, because this was occurring in the 1950s, before MRI, before a solid understanding of multiple sclerosis. After years of symptoms and hospitalizations, my grandmother was eventually diagnosed with MS. At this time, the disease was poorly understood, and no treatments whatsoever were available.

My grandmother, mother, and aunt/uncles: 1960s

Looking back, I believe that my grandmother may have had a very progressive form of MS, and combined with almost daily seizures, this led to a rapid decline. A wheelchair made it's appearance when my grandmother was in her 40s, and eventually she needed nursing care and was bedridden. When faced with the option to move my grandmother to a nursing home, my grandfather refused.

Here is the beautiful part of the story.

My grandmother with her caregiver

My grandfather decorated a beautiful, sunny bedroom for his wife. He hired a caregiver who was a wonderful part of the family, present every day to care for the seven children and my grandmother while he worked. He must have been physically and mentally exhausted. He worked full time, served as husband, father of seven, caregiver, and breadwinner.

The family continued to grow, with myself and many other grandchildren making an appearance. Family Christmases, weddings, and other celebrations always included my grandmother. The love between my grandparents could be felt strongly if you were near them, and for many years, the love grew and the care continued. Eventually, however, my grandmother lost her battle with MS.

My grandfather lived on for another 15 years, gardening, visiting with many grandchildren, and enjoying holidays with the family. He would always say that he was going to see his wife again someday. He was waiting for that day.

My grandparents...1980s

The strength of the human spirit is incredible, isn't it? The ability of a human being to sustain the daily grind, work, children, marriage, illness, and even death. The depth of our strength cannot truly be known until we face challenges like MS. We must undergo many changes in life, adapt, overcome, and go on. 

On their grave is the quote "Suffering Disappears, Love Remains."

When you think about it, isn't that the truth? Our suffering isn't permanent. It isn't forever. But do you know what is? Love.

My grandmother with Louis Armstrong, 1950s

With my own diagnosis, I have seen my grandparent's story as a source of inspiration. I have a large family of my own, with six children depending on my husband and myself. I look at my grandparent's story and realize that anything is possible. There is no "I can't." I can and I will. 

When you feel that life has handed you a lousy deal, keep in mind: You are strong and capable. Your strength comes from a place deep within, and you won't believe how strong you can be when you have to. Lean on those around you when you need to.

MS certainly presents a great challenge to each of us, but I am so grateful for the many new treatments available, and the ongoing research. We live in a time of hope and promise, as far as MS goes. We are fortunate.

Despite everything we endure in life, it is still "A Wonderful World," isn't it?

Please Join Me at iConquerMS™

by Lisa Emrich at Brass and Ivory

This concludes the 162nd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on December 4, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 2, 2014.

Comments for this post.

Carnival of MS Bloggers #160

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

I Hate Good Enough

by Lisa Emrich

Growing up, I learned several things: take care and pride in the things that you do, pay attention to details, follow established or recommended procedures, but be creative and flexible enough to find more efficient and effective ways of accomplishing tasks. In other words, don’t expect things to just happen on their own and be willing to improve upon past efforts.

Each of us have responsibilities and must take an active role in the world around us. No matter what that role is, it’s nice when everybody is able to do their best and helps to make things work well together. But sometimes, aiming for “your best” can lead to a distraction called perfectionism.

I have to admit that I’m somewhat of a perfectionist, in an all or nothing sort of way. It’s always been difficult for me to accept something as being satisfactory, good enough, or almost right. And when I do make a conscious decision to simply do what needs to be done, and no more, I find it challenging when others around me may want to go back to the planning stages and do the work over again. Argh, once I’ve let something go, physically and emotionally, I don’t want to revisit it.

But one thing which I’ve had a really hard time learning to accept is the concept of good enough. When living with chronic disease, sometimes you don’t have the luxury of spending tons of energy perfecting every little detail. Sometimes you just have to simply ensure that things are okay, safe, or clean.

In my previous life, when I used to live alone, I was entirely responsible for everything that happened at home. If the floor needed to be vacuumed, I did it. I even moved light furniture so that I could run the vacuum wand along the floorboards to remove the cat-fur dust bunnies before they grew to adulthood. A bit of prevention helped to keep things from getting out of control.

If the dishes needed to be washed, I did them by hand and scrubbed every metal surface till it shined. If the cat became unsatisfied with the condition of his litter box, he was not shy about letting me know by doing his business on the floor of the bathroom. In that case, I needed to focus more on the prevention stage. Although I was swamped with graduate classes, working two library jobs, and performing in at least four ensembles, I was able to stay on top of routine household chores most of the time.

Now that there are three of us in the house, in addition to our three loving fur babies, and I do not need to do everything all on my own, it seems that nothing is quite as clean as it used to be. Items are often not where I left them and there’s always a pile of dishes to be cleaned.

Face it, I no longer live alone, nor do I have complete control over my surroundings which I’ve come to accept. But that’s not all, I also don’t live alone in more ways than one. My roommates now include multiple sclerosis and rheumatoid arthritis.

These roommates, MS and RA, are messy slobs. They don’t do their own laundry, nor do they sleep when I’m tired or get out of the way when I’m busy working. But these roommates are doing their darndest to teach me patience, to teach me how to accept “good enough” when it really is enough, and to learn how to appreciate imperfections. It makes me appreciate a freshly washed countertop, or a pile of clean laundry which I didn’t have to fold myself, all the more.

What types of things have you learned, or are learning, to accept after living with chronic illness for any period of time? Please share your stories in the comments section below.


This concludes the 160th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on November 6, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 4, 2014.

Comments for this post.

Enter the #LiveBold Anti-Stigma Photo Contest

Fatigue and heat-sensitivity are my biggest hurdles to overcome during the summer months.  Each of these MS symptoms can wipe me out and sometimes I don’t feel like fighting back.  But other times, I become determined to not let them get in the way of enjoying life.  I choose to #LiveBold.

During the past two weekends, Rob and I have been enjoying Saturday night after-hours viewing of classic Indiana Jones movies at the local movie theater.  Initially the thought of watching midnight showings didn’t sound appealing or realistic.  However, I made a decision; I decided to stop what I was doing, lay down, and make myself close my eyes on Saturday afternoon to take a good long nap.  I wasn’t being lazy.  On the contrary, I took control, fought back, and decided to enjoy life despite MS.

That is what it means to live boldly.  It’s about finding the strength to persevere and thrive despite MS.  It’s about overcoming challenges and the accomplishments that make you proud.

We live boldly in many ways every day.  This weekend, I did so by taking a nap.  For Jodi Edwards, it is running.  For you, it might be taking care of your family, socializing with friends, or playing a musical instrument.  Or perhaps it is gardening, taking a walk around the block, traveling, or raising awareness of MS.  The possibilities are endless.

How do you choose to #LiveBold?  
HealthCentral wants to give you the opportunity to share your story and help to stamp out stigmas associated with chronic disease in the process.  The #LiveBold anti-stigma photo campaign is about telling the story of your accomplishments, no matter how big, small, or in between.  You can also win up to $500!

Here’s what you do to join the campaign and enter the contest:

• Submit a photo that shows how you Live Bold accompanied by a 250-word description of your story.  
• Enter on the contest page here on HealthCentral or on the #LiveBold Facebook page by Friday, July 11, 2014.  
• Share your story on social media using the hashtag #LiveBold.  
• Voting for the contest begins July 15 and continues through August 8.  The entries with the most votes will be selected to win $500 (1st place), $250 (2nd place), or $100 (3rd place).  
• You must be 18 years of age or older to enter.

To kick off the campaign, join @HealthCentral for an anti-stigma tweet chat on June 25th at 2pm EST.

Read this post in its entirety:

HealthCentral Launches the #LiveBold Anti-Stigma Photo Contest

Living with MS and Social Stigmas

Social stigmas are an unfortunate part of our society.  A social stigma is the extreme disapproval of a person or group of people based on a perception that something sets them apart from what is ‘normal’ or socially acceptable.  Social stigmas exist around mental illness, physical disability, disease, race, education, religion, ideology, and more.
Removing the stigma of MS.

One theory behind the many efforts to raise awareness of multiple sclerosis is to begin to remove the stigma of MS.  By educating people about the disease, we (those affected by MS) hopefully can show how our differences caused by MS do not make us so different after all.  In concert with that, increased awareness and knowledge may help others to recognize that our differences, whether visible or invisible, do set us apart from the average person and necessitate special considerations.

“I’m not drunk; I just have MS.”

This phrase is commonly used by people with MS to laugh at the effects of the disease.  But it also seems to establish that there is an unspoken hierarchy amongst stigmas.  Apparently walking around in an uncontrolled drunken manner (or stumbling while hammered off your ass, so to speak) is less acceptable than walking on the wobbly legs of someone who has impaired balance, coordination, or strength.  In essence, the phrase is emphasizing that ‘I’d rather be perceived as physically disabled, than as someone who doesn’t know when to stop chugging alcohol.’

“I’m not stupid; I just have cognitive information processing difficulties due to MS.”

Read this post in its entirety:

Living with MS: Overcoming Self-imposed Stigma

Watch 'When I Walk" on PBS

(Photo credit: Long Shot Factory)

Mark your calendars and set your alarms.  On Monday, June 23, 2014, PBS stations throughout the country will premiere When I Walk, an honest, unflinching, yet heartfelt, look at the experience of MS through the eyes of accomplished filmmaker and director Jason DaSilva and his family.  I had the honor of previewing When I Walk last summer and believe that it stands out as a testament to strength, hope, humanity, and resilience.
When I Walk, premiered at the 2013 Sundance Film Festival to rave reviews.  It opens the 2014 Point of View series on PBS on Monday, June 23, 2014 at 10PM and will be available for streaming through July 23, 2014.  When I Walk (2013) is Jason’s 3rd feature-length film following Lest We Forget (2003) and From the Mouthpiece on Back (2008).

Check PBS.org for local listings.

By the age of 25, Jason DaSilva had already demonstrated his skills as artist, activist, storyteller, and filmmaker.  A world traveler and multicultural artist living in North America, Jason prefers to turn his camera toward places and concerns that are often mistakenly or intentionally swept aside and to bring those issues into the light.  His first short film Olivia’s Puzzle (2001) premiered at the 2003 Sundance Film Festival, received an Oscar nod, and was broadcast on HBO and PBS/POV in 2004.  His next two films in the series, A Song for Daniel (2005) and Twins of Mankala (2006) also aired on PBS/POV.

Only months after Jason had been diagnosed with primary progressive MS, a turning point was captured on film during a family day at the beach.  Jason’s legs gave out and he fell to his knees in the sand.  Falling had become a somewhat familiar experience, but this time was different.  This time, Jason couldn’t get up by himself; he needed assistance while he laughed at the ridiculousness of the situation.  Jason’s MS was becoming visible to the outside world.

What does MS look like?  Aside from outward signs of disability that primarily affect mobility, what does MS look like inside the person?  I’m not talking about brain tissue as seen on MRI scans, I’m thinking of what the journey of having MS looks like and feels like to the individual and his/her family.  That’s not something which can be captured in a single interview, magazine article, or cameo in a TV show.

After that day on beach, Jason decided to turn his camera toward himself and chronicle the relentless effects of the disease in an unflinching, uncensored manner.  When I Walk covers Jason’s first 7 years living with MS, as he goes from being wobbly-legged on the beach, to using a walker in public, to relying on a scooter full time.

Jason exposes himself, heart and soul, with an honesty that you don’t often see on screen.  We experience the physical and emotional roller coaster as MS begins to affect Jason’s vision and take away the use of his hands, while Jason searches for answers and possible cures.  We witness the joy as Jason finds his soulmate and they get married and begin a family together.  We can also hear the dark sadness as Jason explains that he couldn’t go with his wife to the hospital when she miscarried because accessible cabs were not available.

When I Walk may make some people uncomfortable in its frankness as it reveals the emotions of being trapped inside a body which increasingly fails the occupant.  However, it isn’t a gloomy, woe-is-me tale.  When I Walk captures the joy of living in the moment and is a testament to courage, love, and the human spirit.  We finally get to see what MS looks like on the inside for one young man and his family struggling with MS.

In creating the film, Jason says that being forced to hand over the camera to others as his vision deteriorated was difficult and the most frustrating part of making the film, but it led to discovering a new focus in filmmaking.

“I used to have total control over the camera and I was a meticulous shooter, so you can imagine that trying to give on-the-fly lessons in visual composition and camera exposure to my mother was torture! The beautiful cinematography of my past was sacrificed, and capturing emotion became my priority. I found a new love for the expression of emotion, the subtlety of story and quietly compelling moments of human experience.”

Jason and his filmmaking partner and wife Alice Cook are working on a new project.  They have developed AXS Map (access map), a crowd-sourced tool for sharing reviews on the wheelchair accessibility of businesses and places.  AXS Map is available online or via mobile web, as well as Android and iPhone applications. To learn more and start mapping, visit www.axsmap.com.

Carnival of MS Bloggers #155

Welcome to the Carnival of MS Bloggers, a monthly compendium of thoughts and experiences shared by those living with multiple sclerosis.

I'm Sorry...

by Lori at A Girl from MS and A Boy with MS

I'm sorry is a phrase that is either really easy to say or really hard to say. Sometimes it is used lightly, and sometimes it is used in some pretty intense situations. In marriage and really in life in general, the art of saying I'm sorry and what it means is actually really complex.

The first words Josh said to me after his diagnosis were "I'm Sorry." I am pretty sure I looked at Josh like he was an idiot. Why was he apologizing? Who says they are sorry for being sick? Are you kidding me? Being diagnosed with MS is something that is totally out of a person's control. Thinking about it now, I'm sorry is a little bit ironic. The things I really need Josh to say I'm sorry for are things like...

• Sorry for leaving the toilet seat up, and the fact that you fall in the toilet at least once a week as a result of this.
• Sorry for never unpacking my bags after business trips.
• Sorry for falling asleep with a glass of red wine in my hand and waking up startled resulting in me drenching you with red wine at 3 in the morning. (True Story... Don't you feel sorry for me?)
• Sorry for being grouchy when I wake up.
• Sorry for leaving my work stuff scattered on the table.
• Sorry for leaving empty glasses on the nightstand.

Even after reading this list, the things I want him to say he is sorry for are pretty pathetic. They are such minor things in life. AND truthfully, I might miss some of these things if he ever quit doing them. Although, he is free to stop doing these things just so I can test out what it is like. :)

On the MS front...

The eye washout has not completely gone away. Josh needs a steroid for his eyes to knock out the inflammation. Dr. Emily called in IV Infusion that can be done at home. Sounds dramatic, but it really isn't-just more of an inconvenience. Josh does an incredible amount of paperwork for his job. Really, I may never understand the amount of paperwork that he does. The IV is being done at home which works out really well for him so he doesn't have to stop work. Just another perk of having a home office. He has to do 3 consecutive days of the steroid. We are hoping to get them started today and finish on Saturday. I laughed and told him maybe he will have a cute little nurse come out to set it up:). It amazes me how far technology and medicine has come. The fact that he can do this from home and it not have an impact on his work is truly amazing.

Back to the "I'm Sorry's"...

Our wedding was FUN. Like, so fun I didn't want to leave. In fact, when we left the reception the first time, no one was outside to see us leave. We had to do a redo and tell the band to stop playing music so everyone would come outside to see us hop in the limo to start our happily ever after. Our friends and family celebrated (maybe celebrated a little too much:), but the main part of our wedding was our vows. When I took those vows, I signed up for MS. I signed on the dotted line when I signed our marriage certificate. Did I know it at the time? No. When you are young and in love, you feel invincible. All you can imagine are picket fences, babies, puppies, and rainbows. (At least as a girl I imagined this. I would be interested to see what Josh imagined:) Would I do it all again and sign up for MS? Yep. And guess what? I. AM. NOT. SORRY. And guess what else? I will NEVER be sorry.

Marathon

by Lyla at Dear Diary

I have been a runner in my lifetime. Some days I still feel like one, but most of the time I am happy to have the memorable experience of sustained motion. In 1999 a friend talked me into doing a "fun run" with her. She had just had her third child and wanted to get back in shape. She had been very involved in track during her college days and was really quite good, and fast.

I said yes, and over the next five years I ran in several events including four marathons and three triathlons. In 2004 I had a training accident which inadvertently led to an MRI revealing evidence of demyelinating disease. My next marathon had begun. It took another six years of head scratching before the diagnosis came. Oddly welcome. Nice to know the reason why, right?

Some questions though, do not have answers that feel satisfactory. And then there is the whole thing about not knowing what the future holds. All there really is to plant my feet on is what is in front of me right now. I am more than ok with that. Distance running is kind of the same. Being in the moment, being with myself is a big part of what I would try to do during a long run.

Now the distances involve navigating the space between my CNS and my body, the emotions that surface with the myriad neurological sensations and the time it takes me to employ good old-fashioned self care. Running shoes are optional.

Sneaky MS

by Cheri at I Tri not to Forget...

After transitioning to the autoimmune paleo and Wahls protocols, I definitely have had more good days than bad, as far as my MS fatigue. I have also learned to be more in tune with my energy levels, and therefore what I schedule for the week, making sure I rest if I need to, so I don't crash.

Having said all of that, there are days when I feel really good and I get caught up in the moment and push it too far. For example, last weekend, I started off my Saturday with a 1 hour vinyasa flow yoga class from yogaglo.com, then went for a walk with my daughter as she rode her scooter around our neighborhood and I ended up spending a couple hours in the afternoon out in my yard cleaning up the garden. I felt great and then it hit me, like somebody turned my switch to "off". I had just fixed dinner and then realized I was exhausted, and needed to lay down that minute. I basically ate dinner and went to bed and that was it for me. A couple months ago, I would have been down for the count the next day too, but I wasn't this time. I took it easy the next day, but I was still able to function, so I feel like I am making progress.

I believe that my body is slowly healing, and I am making peace with this new life, but sometimes this "MSness" can just sneak up on me...


This concludes the 155th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 5, 2014. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, June 3, 2014.

Comments for this post.

Photo Credit: Dawn - Pink Chick via Compfight cc

Kindness of a Child's Heart

A few years ago, my 19 year old cat Joshua died.  I had gotten Joshua just when he was a little kitten during my senior year in college.  He was my buddy and close friend who was by my side as I moved from state to state to attend different graduate schools and finally as I ended up in Northern Virginia.  We were very close.  We had the type of relationship where I only had to click nail clippers a few times and he would jump up on my lap to have his nails trimmed.

When Joshua approached the end of his life, his health had not been good for quite some time.  I was devastated when he finally died on a Friday morning with the help of a visiting veterinarian.  I cried and cried.  On Monday, I tried to teach my normal lesson schedule but I couldn’t stop tearing up and one of my younger students turned and saw me.  I ended up canceling lessons for the remainder of the week after that.

Later that week, there was a knock at my front door.  I was greeted by a student holding a small bouquet of flowers she had picked and a card she had drawn.  In the center of the card was a drawing of me and all around the picture were hearts of many sizes and colors.  Her message was clear: You are surrounded by love!

Read this post in its entirety:

Surrounded By Hearts and World Kindness Day

Carnival of MS Bloggers #148

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

MS Camp

By Miss Chili's Hot Stuff

Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.

Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.

Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk want to participate in, and not just once but as often as there is space available.

Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it.

Overcoming MS retreat, July 2013

from Miranda's MS Blog

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

So in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?
a) I didn’t know it all… & I’ll share my new understandings here,                                b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!
for this, it helped having a little cell, with no TV or internet connection….

So, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on http://www.overcomingMS.org , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

Here’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from http://www.flaxfarm.co.uk  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

Meditation
I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.


This concludes the 148th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 3, 2013. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, October 1, 2013.

Comments for this post.