Tuesday, September 29, 2009

Treatments for Depression in Multiple Sclerosis

Within this series of posts exploring topics related to Mental Health and Emotions, we have discussed mood swings, medication side-effects, stress, depression symptoms and depression causes. Now let’s talk about treatments for depression in multiple sclerosis.

Symptoms of depression are not similar to symptoms of an MS relapse, unfortunately, where if you wait long enough the relapse will subside given you have a relapsing form of the disease. Depression will often get worse over time if not addressed.

Fortunately, depression is very treatable. Taking a prescribed medication AND participating in psychological counseling appear to be the most effective duel approach in addressing depression. Taking advantage of both approaches together is more effective than either treatment alone - medication or therapy.

Read this post in its entirety:

Mental Health and MS: Depression Treatments


Sunday, September 27, 2009

A Sweet Surprise

OUR HEART GREETING:

On Saturday, while I was staying warm and dry in the house (out of the rain), a surprise package was delivered to my door.

Now, I knew that something might be arriving at some point in the future since I gave my address to someone who asked for it. But I had completely forgotten about that....until I opened the special package.

Inside the box, I found the letter and mug pictured above (or on the left). Such a sweet message which gives no names other than coming from the creative group of Our Heart Greeting. I think I first became acquainted with one of the originators of the group on Twitter this past spring, but they've been active for over 2 years.

Members of their group are some of those who donated their art to Todd's t-shirt project, the art of which blows me away. See, already I'm thinking about the people behind the website or twitter IDs or Facebook pages.

So with a smile on my face, I opened the gift within the package. Inside I found an OHG mug which is so cool in and of itself, a jar of Goofy Chix wildflower honey, a tube of Goofy Chix lip balm, a sparkly prism bead MS bracelet, and a kitchen magnet which says "Act to Cure Multiple Sclerosis."

I'm very touched and honored. Thank you ladies. I don't know who nominated me, nor who contributed to the gifts. It doesn't matter much and I can respect that.

Please know that you have done a wonderful thing and I appreciate it.

Thank You.

Thursday, September 24, 2009

Carnival of MS Bloggers #45

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

Inspiration, Humor, Good News, and Immortality

MS: What Will the Neighbors Think? 
by Jen of MS Strength

I’m remembering back when I lived with my friend more than a decade ago. She had a townhouse and was very mature: she also had a stable job, a mortgage that she financed on her own, a pet, a decent car—okay, she was 8 years my senior so it made perfect sense– but what I most recall about my time there was the family next door. A husband and wife in their thirties with a young son. We often spoke to the husband and saw the boy playing out in the front or back, but the wife was rarely seen. My housemate finally told me that the wife had multiple sclerosis.

I’d heard of MS and what it meant long before I developed it. Although before I began displaying symptoms, I had some preconceived notions about the disease. Don’t most people? Seems that to REALLY grasp the ins and outs a person might have to live with multiple sclerosis. So at that point in time the disease was still shroud in some mystery. Were people quickly disabled? Were there effective medications? And this neighbor barely left her home. I was a bit confused.

On Halloween one year, we (me being immature and dressed like a ghost and my housemate looking like a woman in her 30’s with a young trick-or-treater) stopped by the neighbors’ home and this woman came to the door. She was a bit slow, but she displayed no other signs that revealed her chronic, debilitating condition. And she was NICE! I don’t recall if I ever spoke with her again during my time in that townhouse. I am very close with my friend who still lives there, and she told me fairly recently that this woman declined, possibly because she had no outside or online support networks or helpful treatment options, and so her husband and teenage son moved her into an assisted living center nearby. This broke my heart: if I had known how isolated she was, and that I too would eventually have MS, I could have done more. But what do we really know about our neighbors behind closed doors?

When Bill and I moved to our home about 5 years ago, we immediately met some of our neighbors. The ones diagonally across the way were quiet and childless, like we were. The guy next door was also quiet and worked nights. I still find myself talking to him over our backyard fence in the late afternoons. Our next door neighbor was elderly and scattered, but clean and pleasant. The neighbors across the street seemed very friendly and outgoing and I found myself bonding a bit with the wife. She worked in social services. I decided to reveal my illness to her and no one else.

During a time of extreme stress a few years ago– I was beginning a disease-modifying med, in the midst of a severe relapse, and Bill and I had both lost our jobs— I remember my friendly neighbor calling to me from across the street to make sure I was okay. Thank you, I thought. I needed the interaction to feel less like an isolated housewife and more like a part of society. I was often by myself in MY house and I wondered what the other neighbors could possibly think about a young woman home day-in and day-out with no children.

It was about this time that I began to observe my neighbor’s husband, who was legally blind and used a stick to get around the yard. He was amazing! I didn’t pry into the reason for the blindness. Did it really matter? I would often see him ducking into a cab in the morning and returning later in the day. He was getting out and living his life and I vowed that I would follow his example. Being unemployed and on disability did not give me a license to sit back. I was well enough to still get out and contribute to society (although the recent bout with double vision gave me a healthy fear of getting back into the world.)

Very recently I spoke to my neighbor about an issue and we got on the subject of emotional counseling. I revealed to her that I saw her last name and address on my health insurance provider’s list when I was looking for a therapist to deal with my MS a few years back. I had no idea she was a clinical psychologist. She paused and said, “Jen, my husband is the psychologist. He sees patients on a regular basis during the week.” At this point my resolve increased ten-fold. This man, my neighbor and whom I knew so little about, was treating patients while at the same time coping with a serious disability. He would venture out into his yard, stick in hand, with what looked like little regard for what the neighbors thought. He sat on his porch and listened to National Public Radio. I even saw him jump in our river last summer and swim without any guidance.

I now know there is something within all of us–MS or not—that is indomitable and can thrive despite some of the roughest challenges. It is within me and it is also within you. And really: who cares what anyone else thinks!


Ah, the humor of our MS Bloggers. It pleases the soul and lifts the spirit. Sometimes it even causes bursts of laughter.

Joan caused such a reaction recently with her very simple post...

One photo.

One title.

One cute chick.

Joan of A Short in the Cord says,

"I Guess They Saw Me Coming!"





High School Reunion and Tysabri 
by Maryann and Montana

I was accepted by NORD for financial assistance with my Tysabri co-pay, so I will begin the infusions September 25. I can't wait! I feel so very positive about this drug; that it's either going to improve some of my symptoms or, at the very least, stop the progression. The people at the TOUCH program who handle Tysabri patients are very nice and caring. They sent me a tote bag, a nice red fleece blanket, and lots of information and resources about Tysabri.

Time to go work in the garden on this beautiful day. I've planted my first ever winter carrots, and already the feathery tops are an inch high. I have so enjoyed my five little gardens! I had enough tomatoes to share with the neighbors, and for us to eat nearly every day. I even made two batches of tomato soup. However my favorite, after a tomato sandwich, was to peel the tomatoes and chop them up, then add olive oil and balsalmic vinegar and chill. Now, that is delicious! I also had flowers (I grow nearly everything from seed) called Asclepias that have a beautiful red, orange and yellow bloom. These get about 3' high, and they attract Monarch and Black Swallowtail butterflies.

The five little gardens, plus the potted plants on the deck, were just enough for me to handle. I do a little bit at a time so I don't run out of energy, and I still get some exercise and fresh air and sunshine. Plus, I get a great sense of accomplishment growing and harvesting plants. Montana is always out with me in case I fall, and DH pokes his head out once in awhile to see if I'm okay. They keep watch over me, but not in a pushy way. I love them both for that.


Embracing Mortality, Living Immortal.... 
by Linda of Brain Cheese

I was 9 years old when I learned about mortality...the lesson was during a time in my life when I should have been allowed to continue to believe I could fly, if only I learned to flap my arms fast enough. Nine is awfully young to be asked to give up magical thinking and one's belief time is eternal...or at the very least, hoping the summer season would last forever without school.

It was the end of September in the fall of 1973 when I discovered I was vulnerable. It was this particular fall, like no other season, I was suddenly forced to believe my body was not invincible and I was merely mortal...a fragile human being walking on the egg shells of time.

On a mildly warm fall day, I was playing tag football with my best friend on the farm, when I gradually began to feel "weak"...I was having trouble standing without fatigue and the game drained all of my energy. It was only a few hours later my mother picked me up and took me home from our slumber party...I didn't really want to leave, but I felt strange and very tired.

Over the course of the next 24 hours, I developed what my mother thought was the stomach flu...in 1973, my family not only didn't believe in using modern medicine, they simply couldn't afford it. So, I was kept at home feeling very ill and vomiting anything I ate...mother still made me go to Sunday school that day, thinking I was only feigning illness to get out of paying my respects to the Baby Jesus. After all, I HAD faked illness before and successfully been allowed to stay home from church.

The next day, I was allowed to stay home from school because my temperature "didn't feel right"...in the days of the old mercury thermometers, my mother still felt the back of her hand was a more reliable gauge of fever than science. EP (my father) had a short business trip planned to the city 100 miles away, so my mother loaded me up in the van and we all drove out of town...still believing the stomach flu would pass as quickly as it had set in.

By the middle of the afternoon, with my parents in a store while I rested in the van, I suddenly had a strange sensation something was terribly wrong in my body...and I was frightened. I needed to find my mother to let her know I was becoming sicker, so I tried to walk into the store, collapsing at the front doors. Someone alerted my parents to the lump of flesh balled up outside and my parents came to scoop me up...rather than stopping at a hospital in the city, they drove the 100 miles BACK to our farming village to consult with the doctor in a nearby town...I heard my mother put the phone down and try to tell EP calmly the doctor had said to take me to the hospital...and then I passed out again.

I recall being quite alarmed when my father/EP, who was not known for affection, lifted me out of the car at the hospital and carried me into the emergency room practically running...I remember being relieved I was not asked to walk in myself. The doctor met us at the ER, took one look at me, poked my abdomen causing me to nearly pass out again, and uttered the words, "Prep her". I had no idea what those words meant, but I could sense the fear on my mother's face. The last thing I remember is having my arms strapped down out to my side in a strange crucifix fashion while staring into bright, hot lights above...I was screaming loudly, but it was as if no one could hear me...or perhaps the screams were only in my mind.

When I eventually recall being conscious again, I could hear the hum of some sort of machine beside me, and saw my mother crying in the chair across the room...I vaguely remember hearing the doctor telling her somewhat sternly, "Another few hours and she wouldn't have made it". A nurse was adjusting an IV line over head and, with what seemed like surprise in her voice said, "Oh, you're back!" She then very gently smoothed my hair away from my face and turned to tell the doctor I was "awake now"...it was so strange receiving such a gentle caress from a stranger.

I had narrowly survived a ruptured appendix and the ravages of septicemia that had infected my body over the prior 48 hours. Over the next 3 weeks, I would remain in the hospital, receiving IV infusions of various antibiotics, and trying to come to terms with my near death experience.

*******

At the age of 9 years old, I was forced to embrace my own mortality. I remember the exact moment in time the realization of impending death shadowed my thinking...I remember touching upon an understanding that shattered my innocence: I was merely mortal. I could and would die some day and I would cease to be. Illness could overcome me at any time, any place. My body was fragile and unpredictable. It seeped into my thinking quietly, yet with the force of a strong undercurrent, washing away my young foundation.

I believe it was this experience that continued (and continues) to color my view of life as I know it. And this very experience has remained always present in my unconscious, teaching me to be cautious because illness is unpredictable and Life is fragile...the experience shaped much of my adult life and how I have viewed and approached illness (and wellness) in my body, particularly my initial response to being diagnosed with Multiple Sclerosis.

The day I was diagnosed with MS, I embraced my mortality. Words like "fate" and "punishment" and various other themes of demise salted my thinking. I was angry and I was sad, sometimes dipping into all five stages of Kubler-Ross grief in a matter of hours. I recall believing I would most likely end up being in that 5% of the MS population who becomes wheelchair-bound in their first 5 years of diagnosis. I was terrified I would end up a ward of the State tucked away in some dingy nursing home and become either too disabled mentally or physically to *pull my own plug* so to speak. I did everything I could think of in my ultra-organized, anal-retentive fashion of thinking to "prepare" for the inevitable...I exercised every option available to make proper preparations for my eventual demise - from Living Wills to savings accounts - all to embrace my mortality.

Interestingly enough, what I have finally begun to learn in 45 years of walking on this earth and 6 years being diagnosed with MS is this: In embracing my mortality, I have neglected a key component necessary in preparing to die. I HAVE FORGOTTEN HOW TO LIVE.

These past several months while I have been away from this blog/the computer/email, I have been retraining my mind and body in the simple act of LIVING. In a world where the Grim Reaper has always been felt breathing down my neck, this has been no easy task. I remain rough around the edges as I continue to try new paths, new tasks, and learn new LIFE skills. But slowly, I have begun to feel the grip of MS and the squeeze of mortality loosening...I am beginning to feel as though I may once again fill my mortal lungs full of breath without worry the air may be the last I inhale. I am learning that, although the physical body is mortal, LIFE is eternal and will continue on long after my physical being ceases to exist...this notion has nothing to do with religion or heaven/hell/Karma, but everything to do with being present NOW...LIVING my life as though I am immortal.

As we turn the wheel of the seasons yet another round, I am keenly aware of the animal instinct to take stock in our bounty for the winter. Fall is always a time to begin looking toward the dark winter of our souls as we prepare for that quiet stillness. I feel comfortable moving into this new season, knowing this summer, I have harvested all I need to survive the chill of my unconscious being.

I know that I am merely a mortal...and I am CHOOSING to live life like there is no tomorrow. I am CHOOSING to live immortal...


This concludes the 45th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 8, 2009. 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 6, 2009.

Thank you.
Comments for this post.

Tuesday, September 22, 2009

Multiple Sclerosis and Depression: Common Causes

Six years ago today I had an odd dream. It was of my grandmother coming into my bedroom to talk. I mumbled something (in the dream) about wanting to sleep a little longer and she laughed, saying that it was fine.

This was a Monday morning after Hurricane Isabel swept through the East Coast and Washington DC area. I was home alone when the power went out on the previous Friday morning which would ruin the mound of food I had just stocked our new freezer with. The power did not return until late Sunday evening.

I received a phone call later in the morning on Monday. My grandmother had passed away that morning. This turned out to be only the 2nd of too many devastating events which occurred during the most hellacious week I’ve ever experienced before or since. Hurricane. Death. Funeral (in Oklahoma). Family Violence. Police. Hospital. Panic Attacks (mine). Xanax. Delayed, then Cancelled Flights. Stuck in St.Louis. Missed Flights leaving DC for Indiana. Doctoral Oral Exams on following Monday.

After recovering, slightly, from all of the above, I knew I NEEDED HELP!!! As a result of the hellacious week, I had many reasons to be depressed. I found a therapist with whom I would develop a great working relationship, which certainly helped years later when I was being diagnosed with MS.

Common Causes of Depression

1. Disease Response

Experiencing a period of depression and uncertainty following the diagnosis of MS is not uncommon. It takes time to adjust to a “new reality” and grieve the loss of what was, or the loss of a planned future. I have observed that the first year post-diagnosis seems to be the most difficult one emotionally. However, most patients do eventually adjust to altered circumstances, even the ones which come from new disabilities, loss of employment or loss of relationships.

To be honest, I must admit that I’ve experienced the same post-diagnosis depression during each exacerbation. All of the uncertainties and fears come rushing back with each gain of unstable ground. If staying in a place of “emotion-centered” thoughts and avoiding constructive problem-solving skills, I become depressed more easily during and following a relapse. It takes time to come back around to acceptance.

Read this post in its entirety:

Mental Health and MS: Depression Causes


Monday, September 21, 2009

Beginning of School, Stomach Flu, and Studio Mascot

Only the 2nd monday in my piano teaching schedule and already 3 students (out of 7) are staying home sick today. It's going to be an interesting fall. Watch how Musette is eagerly awaiting the arrival of students. Don't be sick long!!

video

Multiple Sclerosis and Depression: Symptoms

Dreams are often a good indicator of where our needs in life are. The brain has an amazing ability to work through problems and issues while we sleep which is where the phrase - sleep on it - comes from. Sometimes the mind needs to work through our emotions while we sleep which is when my most vivid dreams seem to emerge.

I love the water. When swimming, I feel as though time stands still. The water passing over my shoulders as I lie on my back and kick a lap or two feels great. The gentle stretch overhead in a backstroke is rejuvenating. Going without contacts and having my ears underwater takes away spatial references enough so that I’m in my own world.

However, I have a dream which comes to visit occasionally. There is nothing in this dream besides me being underwater and pulled down into the depths of the ocean. Rays of light are shining through the surface, but they seem to be pulled farther and farther away. At first I struggle to rise, but then it doesn’t seem to matter. I lose all desire to reach the surface, even for a breath of fresh air.

This dream appears when I need a gentle message to examine my mood and mental health. It is the point at which I no longer pay attention to the dream that I’m in trouble, a sign of a major depression episode that has engulfed me leaving no desire to climb out of it. I’ve been in this place more times than I care to count. Never suicidal, mind you; just really in a very dark place.

Read this post in its entirety:

Mental Health and MS: Depression Symptoms


Sunday, September 20, 2009

Welcome to the MS Blogging Community

Arranging Shoes by Bibliotekaren
Life has thrown some curve balls my way in recent times -- brain tumor surgery, atypical MS, and a couple other things. I'm playing with different writing styles as I ponder this all. Some posts are dorky rhyming verse, others are short story style, and some are just posts of my thoughts. I have no idea where this will go.

Sherry's Life, Love, and MS
I'm a 36 years old woman , who woke up 3 years ago with double vision. It was toooo wierd! I run a daycare from my home, and I just had time for a quick shower and some lip gloss before the little ones started knocking at my door at 7am...no time to call in sick. I wasn't scared...but found it rather amusing...looking out to my front street, I saw two lanes of traffic going by , even though we live in a single lane street. As my clients started to show up, was my normal happy self, not wanted to scare anyone, and definatly not wanting anyone to worry about leaving their kids with me. No biggy...maybe I needed glasses???

I planned to put a call in to my Doctor when he opened in a couple of hours. I continued on , greeting my clients...drinking my morning coffee.

By my fourth cup of coffee...it was gone! That was wierd! Oh well....on with my day!

Enjoying the Ride by Mitch
Before my diagnosis I had a Chemical Engineering degree, an MBA, and a promising career. I had an amazing wife and two wonderful children (still do). I had a nice house with a swimming pool, a big lawn, and a bunch of toys. I was living the dream. I enjoyed a variety of physical activities such as golf, camping, hunting…operating the brake and gas pedals with my feet, typing, and standing in the shower. Then one day as I was jogging on my treadmill I noticed that my left foot went slap, slap, on the treadmill, whereas my right foot smoothly transitioned from heel to toe, heel to toe. After a year of visits to an assortment of specialists, I was diagnosed with Primary Progressive Multiple Sclerosis, a particularly disabling variety of MS. Eight years later I sit here in my power wheelchair, dictating to my computer because my hands won’t allow me to type more than a couple of sentences. I can’t work anymore, and my wife now doubles as my caregiver. I’ve started this blog to help me pass the time while engaged in a productive activity- advocating for the disabled community, of which I am now a reluctant member. I am Mitch, and despite everything I am still Enjoying the Ride.

Conservatism and Multiple Sclerosis by Mitchell
We live in a tragically trying time. I know I am in a mess. I am worried about my grandkids. They can't grasp what I am telling them. They live in a world where they think everything will be ok. Our freedoms are under attack from within and abroad.
Who will be the true American Patriots and step up? Is it YOU? Look in the damn mirror and see if that person is ready to say enough is enough.
I believe in God, Guns, Freedom of speech. Freedom of thought. I guess that makes me an enemy of the "State." So be it.

My Hopeful Journey into Actual MS Recovery by Loobie
I'm a 42 yo guy who just wants to get better.

MS Divorced Dad
MS need not make you any less of a parent!

Don't Wait, The Chance Will Pass You By by Valley
I was diagnosed with relapsing remitting multiple sclerosis in early '06 after freaking my neuro out with symptoms mimicing CNS vasculitis in late '05. I started low dose Rebif in the Sept '06 and was miserable for nearly 7 months.

By summer '07 I felt in control enough to begin a lifestyle change and do all the things I regretted as a 20 year old. I'm turning 25 this year and thinking about going 44 Rebif and talking about how fatigue desrupts my life at my annual teleconfrence with my ms neuro in June since my GP doesnt give a crap.

Been Better, Been Worse
chronicles my day to day life with MS! Few people can say that they retired at 36 years old, but I have done just that. I'm originally from Louisiana, but have called Missouri my home for the last thirteen years.

Limbo Land by Karen

Ramblings of a Simple Man by Anthony
I am your average 29 year old man. I am married to the most wonderful wife and father of a beautiful little girl. I am a devote Christian and I suffer from MS.

MS Blog - Eat Right 4 Your Type
by Britney

Saturday, September 19, 2009

the Ride project



One of our very own MS Bloggers has launched an ambitious project...

To donate $1,000,000 to the Myelin Repair Foundation through photography sales of limited edition prints focusing on things that move. Courtney recently launched the Ride project website and blog arising from her previous blog, No Time For MS.

Below is an example of her work. So many amazing individuals who live with MS!!

Please help to spend the word, especially to those who would be interested in purchasing limited edition prints and contributing to myelin research. You can also follow Courtney and the Ride project on Facebook and Twitter.


Courtney, you go girl!!!

Wednesday, September 16, 2009

Too tired to blog. Read about Biogen and Avonex instead.

I am so utterly exhausted and fatigued that I can hardly think straight during the time which I force myself to be awake (at least today). So, my apologies for the lack of enlightening or informative posts, especially during Invisible Illness Awareness Week.

But while I was scanning through the posts collected in my Google Reader, more than 300 of them, I saw the following posted by MSRC. I have thoughts about this but cannot process them yet. So here for your reading pleasure....information regarding Avonex.

Biogen gets patent extension on MS drug Avonex to 2026

AvonexBiogen Idec Inc. has essentially received a 13-year patent extension on its biggest moneymaker, the multiple sclerosis drug Avonex, according to a Securities and Exchange Commission filing Tuesday.

Key patents dealing with the production of Avonex are scheduled to expire in 2013. But in the regulatory filing, Biogen said it has received a patent for the drug's use in treating a viral condition, disease, cancer or tumor until September 2026. The so-called method of use patent also includes the use of Avonex as a multiple sclerosis drug.

Sales of Avonex reached $591.2 million during the most recent quarter.

The company would not say whether this new patent blocks any potential competitors seeking to bring a generic version of the drug to market between 2013 and 2026.

The patent win comes as the debate over a pathway for copies of pricey biotechnology-based drugs continues to work its way through Congress. Currently, there is no system set up for drug developers to make generic equivalents of biotechnology-based treatments. Unlike their chemical-based counterparts, biotech drugs are made using living organisms, making the production process more complicated than just copying a formula.

Biotech companies thus far have faced no generic competition and they are fighting to keep a strong position on the market. In proposal after proposal, the industry has backed bills seeking up to 14 years of market exclusivity for any new biotech-based drug, arguing the companies need that time to recoup costs that went into making the expensive treatments. Shorter periods, the industry argues, could cut incentives for companies to invest so much in developing the treatments.

Meanwhile, the generic drug industry has been lobbying for much shorter periods of market exclusivity and would like any new system to mirror the current timeline for chemical compounds, currently about 5 years. Their argument has centered on cost-savings for consumers, though the savings wouldn't be as large as that seen with copies of chemical-based drugs.

Biotech-based cancer treatments such as Genentech Inc.'s Avastin can cost up to $50,000 per year.

Source: Forbes.com Copywrite 2009 Forbes.com LLC™ (16/09/09)

© Multiple Sclerosis Resource Centre

Saturday, September 12, 2009

U2 Silver and Gold Live

Just going through my music collection and was reminded of this great U2 song. Enjoy.

Thursday, September 10, 2009

Carnival of MS Bloggers #44

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

Please complete this survey before September 14, 2009. Thanks.

HOPE

A special story shared today by Judy who blogs at Peace Be With You.

Hope got up that morning and breathed in the sunshine air. That’s what she called it—sunshine air, that quality of air which shines brightly and thrills with promise, of shadows remaining distant, of strength staying resolute. So she breathed in the sunshine air and thought, Oh, my, this is the day that the Lord has made. Let me rejoice.

She was heading to the kitchen to prepare her morning toast when she tripped over a—what did she trip over? She looked down, but the tile floor was as smooth as ever, no stray objects around her that she could see. Must have been daydreaming already, she thought. I’d better get my act together so I can go out and enjoy this sunshine air.

The first thing she did when she walked into her blue-and-white kitchen—hey, weren’t those hand-painted, blue willow plates on the walls just great?—was to pull open the French doors to the patio. She stood at the threshold, her hands propped high above her on either side of the door jamb, and breathed in deeply. Jasmine, even a hint of morning dew, filled her lungs. Promise, that’s what this day reminds me of, she thought. Of how a day is always the beginning of the rest of your life.

She walked back into her kitchen, pulled out two slices of oatmeal bran bread and the jar of mango preserves bought the day before at Morning Glory Farms. After putting the bread in the toaster, she turned the lid of the jar to open it. Except it wouldn’t open.

“Drats. I should have bought that jar opener I saw at the store yesterday.”

It had seemed like such an unnecessary thing to do at the time. $13.99 might not seem like a lot to others, but she had decided to save every penny she could toward a vacation hiking up the Costa Rican mountains with other members of the Audubon Society, and $13.99 was 1,399 pennies.

She tried again to open the jar. The lid wouldn’t move. Her hand kept giving out at the wrist, as if it lacked strength. Hearing the sound of rustling leaves coming through the patio door, she remembered—this is a day of sunshine air. Then she reached into her pantry for the strawberry jam she usually used except on days like today when promise seemed especially worth celebrating.

That’s okay, she thought. Strawberry jam is good enough to celebrate sunshine air. Anyway, it also came from Morning Glory Farms, and everything they produced was a miracle.

She went to place the jar on the counter, but missed the edge. The jar dropped to the floor, red jam spilling onto her white tile and splattering her cabinet doors, shards of glass everywhere. After gazing at the broken jar on the floor for long moments, she leaned over to pick it up, but lost her balance and landed on her hip on the hard floor. In the stunned moment after landing, she thought, what just happened? Then she quickly examined her arms and legs for cuts. Somehow, miraculously, she had fallen where there was no glass. Only a bit of jam stuck to the hem of her short, frilly nightgown.

“See, I told you,” she said, using her elbow to get off the ground. “This is a day of promise.”

After wiping clean the mess on the floor and cabinet doors, she picked up the edge of her nightgown, and rinsed the jam off. Her toaster had long since rung to tell her the toast was ready so she threw out the hardened slices, dropped two more in, and went looking for something to spread on her toast.

Butter, isn’t that what most people put on toast? But did she even have butter? She never used ordinary butter, not even for cooking. One thing she had always been proud of was how she ate right, exercised, and kept a good attitude.

She opened the refrigerator door.

No butter.

The toaster rang.

She gazed at the toaster, heard the leaves rustling behind her, and sighed. Then she squared her shoulders and reached for her toast. She slid the slices onto a plate and strode to her outdoor patio table. There she sat, breathing in the sunshine air and smiling before she bit into her dry toast. That’s when she noticed the pamphlet on the adjoining chair. She thought she had thrown it out the night before, but apparently not.

The designer who laid out the pamphlet’s artwork must have been a cheerful sort—or not knowledgeable or smug or superior or something—because he chose uplifting colors. Hope stared at the pamphlet until she remembered her toast was now growing cold. She bit into the dry toast. The crisp edges seemed to scrape across the delicate upper skin of her mouth. Her skin in general seemed awfully sensitive these days, and she reflected on how skin was supposedly the largest organ of the body, which meant she was just one big sensitive organ.

She lay the toast back on her plate. I probably should use paper plates from now on, she thought. Less risk if I drop them. From the patio, she scanned the blue-willow plates she herself had hung in her kitchen. It didn’t seem likely she could add another, not just because of the money but because she’d better donate her ladder to someone who could actually climb it.

She picked up the pamphlet from the adjoining chair, gazed at its aqua and apricot tones and thought, the designer should have made sure the pamphlet’s contents were equally uplifting. Or were the pastel tones intended to take the edge off the life sentence contained within? Is that what Hope had to do now—paint her life in pastels?

She had always hated pastels. It was the primary color spectrum of a tropical jungle or the honesty of Delft blue china she always preferred. She laid the pamphlet down and picked up her toast.

Stay with the program, Hope. Stay with the program. Remember, this is a day of promise.

A ray of light filtered through the Japanese maple usually shading her patio. It lit up Hope’s face and she lifted it to let the sunshine warm her. A breeze picked up the pamphlet in pastel colors, and it fell to the flagstone terrace.

Alerted by the sound, Hope watched as the pages fluttered. Then the pamphlet closed on itself. Living with MS, the teal-colored title said.

Saving 1399 pennies was not going to make a hiking vacation in the Costa Rican mountains possible, was it?

Hope swept up her plate, most of the toast still uneaten, and headed for the kitchen door. There, head bowed, she stopped momentarily before turning to look at the patio again. The sun is still strong, she thought as she lifted her face to warm it. The plate in her hand dropped to the flagstone and shattered.


This concludes the 44th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 24, 2009. 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, September 22, 2009.

Thank you.
Comments for this post.

Wednesday, September 9, 2009

Share Your Thoughts on MS and Genetic Research!!

Earlier today, I was contacted by Virginia Hughes who is a freelance science writer with a special interest in genomics and disease, specifically autism and schizophrenia.

She is participating on an ethics panel at the 2009 Cold Spring Harbor Laboratory (CSHL) conference on Personal Genomes. Virginia says that "they've ask me to comment on what I think is the current and future appetite for genetic testing among people who belong to various disorder advocacy organizations, such an MS organizations."

She is looking for solid numbers to include in her presentation, so created a survey about our thoughts on Multiple Sclerosis, Genomics, and Genetic Research.

The survey is simple - only eight short questions. Virginia would appreciate receiving at least one hundred responses so that the results might show some meaningful trends. Perhaps we could spread the word and get even more than that.

Please complete the survey and be sure to mention the MS blogs and groups where you often read MS-related information.

Thank you,

Lisa Emrich

Feel free to copy/paste this post in its entirety and post it on your blog and at your favorite MS forums, message boards, and social networks.

Tuesday, September 8, 2009

Mental Health and Multiple Sclerosis

Last week I wrote a post - Mood Swings, Medication, and Multiple Sclerosis - in which I shared a slice of my mental health reality. For me, the experience of mood swings being more prevalent during certain times of the month has become much more common since finally being diagnosed with MS and prescribed Copaxone. Whether the cause of the mood swings is MS itself, a side-effect to medication, or simply hormonal changes, the experience remains as unpleasant.

The passionate response to the post was humbling for me. What was intended to be simply light-hearted, spoke the truth for several individuals who saw themselves in the description of my personal experience. Thanks so much for sharing part of your own story with me. Let’s extend our conversation and discuss the ways in which mood can be affected by multiple sclerosis.

[...]

As you can probably guess, I find this topic to be highly fascinating and increasingly more relevant to my MS experience. I must admit that I experience clinical depression and have for many years. Within that experience, I also have major depressive episodes and have been fighting not to sink into one in recent weeks.

So I’m selfishly interested in examining this topic for the benefit of our community at MS Central and for myself. For the next few weeks, I will discuss depression, mental health, stress, medications (including side-effects), and multiple sclerosis. We will also explore ways to manage each of these influences and maintain our quality of life.

What topics are of most interest to you in discussing Mental Health and Quality of Life? I have my ideas of where to go with this, but it’d be nice for you to also guide the conversation.

Read this post in its entirety:

Mental Health, Mood, and MS: A Fresh Look


Saturday, September 5, 2009

There is Still Hope

Monday is my birthday. It should be a happy time, I suppose. Isn't 41 truly the beginning of middle age? I can hardly believe that it's been over 9.5 years since I temporarily went blind due to optic neuritis. Wow, time flies and life has changed.

Many of those changes have been good and the result of unexpected circumstances. But lately I've been fighting a depressed mood. Insomnia has grabbed me and I do enjoy the quiet of night. I have little motivation to get things done which is understandable when using the vacuum makes my wrists hurt, folding laundry makes my arms ache, and the presence of piles of clutter on just about ALL surfaces makes me stick my head in the sand (so to speak).

I do like this time of year though. The temperatures begin to drop, sweat doesn't begin to drip as soon as you go outside, and a blanket on the bed gets used at night. The only thing I wish did not change during this time is the length of days becoming shorter. Much too soon, it will be getting dark at 5PM.

Besides that, Monday is my birthday (which I think I already said). Last year, I approached my birthday with great expectations and hopes for the future. I was turning 40 and pretty excited about potential changes in my life... changes which failed to occur. Now, I'm trying really hard not to dwell on the differences between dreams and realities, expectations and results, hopes and failures.

I'm trying to hold it together and live without expectations. But it's really hard when there is still hope.

To symbolize the assembly of putting our lives back together after disappointment, I'm offering the jigsaw puzzle below.

Click to Mix and Solve

Now go have a great Labor Day weekend!!

Thursday, September 3, 2009

Where have I been?

Off playing online games, that's where!! OK, a couple of unnamed MSers are trying to get me hooked on some Facebook games. Then there is Poker which is still fun.

For those who like these sorts of things, here are some more:
Brain Games by FitBrains
Brain Games by Luminosity

And don't forget The Online Brain Games Blog which has a lengthy list of Free Brain Games.

"Increasing cognition in MS by playing computer games"
from MSRC Latest MS Research News

Is it really possible to improve some, MS related, cognition issues by playing computer games? Doctors from Baylor College of Medicine in Houston seem to think so. According to their poster presentation at the World Congress on Treatment and Research in Multiple Sclerosis (ACTRIMS + ECTRIMS + LACTRIMS) Montreal, Quebec, Canada (Sept. 17-20, 2008) they conclude that trends toward improvement in information processing accuracy, memory, and attention occur with the use of online cognitive rehabilitation programs.

It’s estimated that at least 65% of Multiple Sclerosis patients endure cognition problems on a day to day basis. Challenges with multi-tasking, memory attention, executive functioning, information processing, learning, and visuospatial abilities are common and can negatively impact quality of life and stress levels.

The BCM doctors set out to understand whether using computer-assisted cognitive rehabilitation (CACR) would help patients with mild to moderate cognitive impairment. After 18 weeks of using computer assisted rehabilitation, the twelve individuals enrolled in the trial, showed improvement between 19-38 percentile points in the various cognitive areas. That’s exciting news when you are struggling to learn a new task, follow a recipe, remember your own family’s names, or how to do simple math in your head.

Finding sites that offer free brain fitness exercises online isn’t too difficult and here are a few to help get you started. Happy Neuron, Fit Brains, and Lumosity. So, go ahead and start exercising your brain today. You have everything to gain.

For more info: BCM's Poster Presentation Source: examiner.com © 2009 Clarity Digital Group LLC (02/09/09)

Tuesday, September 1, 2009

Welcome New MS Bloggers to the Community


La Paz Con Vos = Peace Be With You

I am Judy, a writer living with MS.

Howling at the Moon
zoomdoggies: Being an account of life with a guy, a teenager, a couple of greyhounds, a job as a tech writer (newly retired), and MS. Not necessarily in that order.

The End of the World Will Have to Wait Until Next Year
Paul: Still trying to figure out what I'm going to do with my MS. It doesn't quite know what it wants to do with me, so fair is fair. Really!

Staying Alive with Chronic Illness
jannimarie: This blog is dedicated to those who are living with chronic illnesses such as Multiple Sclerosis, Fibromyalgia, Chronic Fatigue Immune Dysfunction, Restless Leg Syndrome, Depression, Lupus, and other painful and debilitating conditions. Let's swap stories, tips, and ideas!

Me Susan.
Susan: I am a 35 year-old woman who has lived with MS for 25 years- my mom was diagnosed when I was 10, I was diagnosed when I was 28. I a divorced mother of two amazing girls.

Been Better - Been Worse
...chronicles my day to day life with MS! Few people can say that they retired at 36 years old, but I have done just that. I'm originally from Louisiana, but have called Missouri my home for the last thirteen years.

Bobbie's MS Journal

PMS, Volatile Emotions, and MS

This post is for the women living with MS and the caregivers who live with the women living with MS. (are you with me so far?) Today, I’d like to talk about premenstrual syndrome, emotional volatility, and multiple sclerosis. Men, you may want to stick around for this discussion; it just might affect you too.

There are several small studies which have explored the relationship between the menstrual cycle and pseudoexacerbations in MS. One such study investigated the role of body temperature and use of aspirin as prevention, published by Dr. Dean Wingerchuk and Dr. Moses Rodriguez in the Archives of Neurology 2006;63:1005-1008. Another article, Understanding Fluctuations of Multiple Sclerosis Across the Menstrual Cycle by Dr. Maria Houtchens, Ninel Gregori, and Dr. John Rose, was published by the Consortium of Multiple Sclerosis Centers.

Anecdotally, there are a number of MS bloggers who discuss this very phenomenon of increased symptoms in their monthly lives.

Before developing MS, I never experienced severe premenstrual symptoms nor the related emotional swings. Honestly, I didn’t. (Please don’t throw any tomatoes at me.) Sure, I had painful cramping that would keep me in bed and a heavy flow which would last a full week. But really it was only the intense craving for chocolate and insatiable hunger which clued me in what time of the month it was, if I had forgotten.


Read this post in its entirety:

Mood Swings, Medication, and Multiple Sclerosis