Brass and Ivory: Life with MS & RA

Merry Christmas!

noreply@blogger.com (Lisa Emrich) — Sat, 24 Dec 2011 19:44:00 +0000

Horns A Plenty Christmas in DC

Joined by members of the National Symphony Orchestra Horn section. I was teaching this evening and couldn't attend but am glad to hear a portion of their performance.

My hope is that everybody has a great Christmas and New Year's.

Health and happiness to us all.

Out with the Old, In with the New

noreply@blogger.com (Lisa Emrich) — Mon, 26 Dec 2011 19:22:00 +0000

Do you take note of the expiration dates of your medications, both prescription and over-the-counter? I must admit that I do not always check the dates printed on the packaging. But I’m here to tell you that it is an important thing to do. In recent weeks, our household has encountered a couple of situations where taking expired medications have produced less than satisfactory results.

The first situation involved an over-the-counter medication to help with chest congestion. This drug is one of those which had previously been available by prescription only but is now available over-the-counter. My mother looked through our “drug drawer” to see if we still had some Mucinex on hand - we did. She began to take it, following the directions, but didn’t experience much improvement in her symptoms.

I checked the original container and discovered that our bottle of pills was at least two years beyond the expiration date. Oops. Those pills were likely several years old and had lost their potency. She stopped taking them. Some drugs may become more potent or less stable over time and should not be taken past their expiration date.

Read this post in its entirety:

Out with the Old, In with the New: The Importance of Expiration Dates on Medications

Maximizing Medical Dollars

noreply@blogger.com (Lisa Emrich) — Wed, 28 Dec 2011 19:37:00 +0000

Timing medical treatments to maximize dollars saved. As the year is quickly coming to a close, I wanted to confess one of my little medical secrets. I have postponed medical treatment based on health insurance coverage and out-of-pocket cost. I have also scheduled medical procedures near the end of the year because insurance would pick up the entire tab. I’m sure that I’m not the only one.

Read this post in its entirety:

Timing Medical Treatments for Financial Reasons

Welcome MS Bloggers to the Community

noreply@blogger.com (Lisa Emrich) — Fri, 30 Dec 2011 05:16:00 +0000

my MS - Jamie

Living with MS? Me too...Let's talk - Sandra

Me and my MS - Ashley

Jessica's Journey with MS - Jessica

Why is Life Hard? - Sandra

(Mis?)Adventures with MS - alibab

My Life, My Perspective - Tonya

AnonyMS

Anita's Days of Happenings - Anita

Skydiving for MS - Fred

{M}y {S}carlet Letters - Lori

2012, Here We Come!

noreply@blogger.com (Lisa Emrich) — Fri, 30 Dec 2011 20:50:00 +0000

2012 is going to be busy!! Just thinking about it makes me want to go take a nap...kinda, sorta...yea seriously. Is that a good thing? Lots to look forward to and tons of responsibilities. Definitely no time to dilly-dally.

For the ChronicBabe New Year's blog carnival, Jenni posed a few questions:

What's your plan for the coming year? Is there something you've committed to doing, and do you have an accountability buddy? What's going to change? What's going to be freakin' awesome? Tell us! Not only do we want to know, but also...you'll help inspire others.

January - Performances for me include the National Gallery of Art Orchestra and a concerto competition where I'm accompanying two young stars; lots of medical procedures and treatments for both my mother and myself (including a round of Rituxan); and tickets to see "The Lion King." And my mother will start coming to my weekly "Gentle Yoga" classes.

February - 8 months before the wedding, it's time to go dress shopping!! This most likely means a trip to NYC. Continue yoga (you know you'll need it. Lisa).

March - At least one conference to attend; time to push the students in preparation for their upcoming solo performances. Practice, practice, practice!!

April - Solo Festival time. I will be accompanying a friend's entire horn studio (approx. 14 students, I think) as well as my own students and others who hire me each year. It will be a very busy time. The fingers better be on their best behavior, that's all I'll say about it.

May - Studio Recitals for my own students as well as for my friend's students. Finally it's time to take a breath....oh wait, now it's probably time to think about the wedding again.

June, July, August - Work on getting the house ready for visitors in the fall. Clear out all the old stuff, fill up several boxes for donations, and make room for Rob's things.

September - Schools starts back up and so do lessons. Will probably have at least one conference to attend.

October - THE WEDDING!!

November, December - Holiday time again already?

Everything mentioned above are things which I'm committed to doing. My mother (who is now officially retired) will be there to help me along the way. How convenient is that?

During her retirement ceremony, she surprised me with a bouquet of flower and a small thank you speech. My mom shared that I was her best friend, as well as her nurse at times. It's true. We've really become close during the past 12 years since we began sharing living space in DC. We've both experienced tremendous health challenges. A true blessing, she's always there for me and I'm there for her. Although I want and NEED my alone time, it is comforting to have such great support and friendship at home.

This next year will be one of many transitions and challenges. Hang on to your seat folks, it'll be a whirling, twirling, unbelievably quick ride. 2012 - here we come!!

MS Central in 2011

noreply@blogger.com (Lisa Emrich) — Sat, 31 Dec 2011 19:40:00 +0000

A very busy year for MultipleSclerosisCentral.com was 2011. Please find links to all of my MS-related posts for the year. Happy reading!

2011: The MS Year in Review on HealthCentral

Happy New Year 2012!

noreply@blogger.com (Lisa Emrich) — Mon, 02 Jan 2012 02:57:00 +0000

We've had a lovely weekend. Friday night, met with friends for a dinner party. Saturday, slept late then took my mother to the movies and out to dinner. Stayed up late playing board games. Sunday afternoon, met with friends for a lovely early dinner which was topped off by homemade plum pudding. Even partook of the flaming brandy for good luck.

If the past couple of weeks are any indication of how busy the coming year may be, it will certainly be packed with lots of activities, friends and loved ones. May 2012 treat us all with good health and fun times.

Inspiration Found Within Letters of Disease

noreply@blogger.com (Lisa Emrich) — Mon, 02 Jan 2012 19:14:00 +0000

M - Motivation

Motivation is at the heart of almost everything we do. We must be motivated to get up every morning to face the day. We can share of ourselves and provide motivation to others. On a personal note, I hope to be able to motivate others to live better lives with MS.

U - Understanding

I am blessed that I have a fiance and mother who truly understand the roller coaster which is living with an unpredictable disease. When I don’t feel well, I know that I won’t be judged for not rising to an occasion.

L - Love

What can I say? Love is vital to life. To give love and to receive love. To be surrounded by love. To know that you are loved. This is a basic need.

T - Trust

Trust is a tricky thing. Sometimes when I have doubts, I must remind myself to trust that things will indeed be ok.

I - Inspiration

My students inspire me each week. I don’t have as many students as I once did, but the ones I do have are highly motivated to learn and succeed. I have no slackers right now which is truly a blessing.

Read this post in its entirety:

M.U.L.T.I.P.L.E.S.C.L.E.R.O.S.I.S. - What would your letter say?

"Ill Wind"

noreply@blogger.com (Lisa Emrich) — Thu, 05 Jan 2012 04:37:00 +0000

Sometimes there are just songs which make you laugh no matter how many times you hear them. This is one of those for me...the "Ill Wind" which is sung to the tune of the Rondo from Mozart's Horn Concerto No. 4 in Eb Major, K. 495. Please enjoy an original performance of Michael Flanders and Donald Swann from their second album, "At the Drop of a Hat," recorded in 1964.

(lyrics)

I once had a whim and I had to obey it,
To buy a French horn in a second-hand shop.
I polished it up and I started to play it,
In spite of the neighbours who begged me to stop.

To sound my horn,
I had to develop my embouchure.
I found my horn,
Was a bit of a devil to play.

So artfully wound,
To give you a sound,
A beautiful sound,
So rich and round.

Oh, the hours I had to spend,
Before I mastered it in the end.

But that was yesterday.
And just today,
I looked in the usual place.
There was the case,
But the horn itself was missing!

Oh where can it have gone?
Haven't you? Hasn't anyone seen my horn?
Oh where can it have gone?
What a blow, now I know,
I'm unable to play my Allegro.

Who swiped that horn?
I bet you a quid somebody did.
Knowing I found a concerto,
And wanted to play it,
Afraid of my talent in playing the horn.
But only today to my utter dismay,
It had vanished away like the dew in the morn.

I've lost that horn!
I know I was using it yesterday.
I've lost that horn, lost that horn,
Found that horn...gorn.

There's not much hope of getting it back,
Though I'd willingly pay a reward.

I know some hearty folk,
Whose party joke's pretending to hunt with the Quorn*.
Gone away! gone away!
Was it one of them who took it away?

Will you kindly return that horn?
Oh where is the devil who pinched my horn?

I shall tell the police!
I want that French horn back.

I miss its music more and more and more.
Without that horn I'm feeling lost/sad and so forelorn.

I found a concerto and wanted to play it,
Displaying my talent at playing the horn.
But early today to my utter dismay,
It had totally vanished away.

I practiced the horn and wanted to play it,
But somebody took it away!
I practiced the horn and was longing to play it,
But somebody took it away!

My neighbour's asleep in his bed,
I'll soon make him wish he were dead,
I'll take up the tuba instead - WAA WAA !

Another version of the famous "Ill Wind" performing by Boris Brott.

*The Quorn is a famous an English fox hunt.

Carnival of MS Bloggers #105

noreply@blogger.com (Lisa Emrich) — Thu, 05 Jan 2012 19:05:00 +0000

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

Strength, Hope, and Forgiveness in the New Year

Forgiveness and Letting Go

by Kate Wolfe-Jenson of Dancing with Monsters

Whether it's forgiving myself or someone else, I've discovered it's a practice.
I love practice. Have I mentioned that before? Forgiveness is built into practice.

I plan to do something. (Intention)
I make an effort to do it. (Action)
It doesn't go the way I think it "should" go. (Judgment)
I let go of my ideas about what should have happened. (Mercy)
I reset or re-envision my intention. (Resilience)
Repeat.

Watching myself around forgiveness, I have found an unfortunate tendency to get stuck on step three.

I judge. I try to let go, but it really shouldn't have gone the way it did and it's really not my fault, but if I'd only done it differently…

The image that came to mind is of carrying around a stone. I set it down for seconds and then, compulsively pick it up again.

Forgiveness becomes a practice of letting it go and letting it go and letting it go.

What Race Will you Win?

by Dee Dee Vickers

Some days my MS body feels okay -

but other days, in the bed I want to stay.

But get out of bed is a must for me,

cause if I don’t, that’s where I’ll always be.

One side of my left leg doesn’t feel right,

and the right side feels really tight.

But do a few stretches before I arise,

and once I’m up, each day is a surprise.

What challenges will I face walking the pool?

At least 30 minutes of workout is always my rule.

Then home to shower, and “put on my face;”

And now I am ready for the next big race.

Run a race, I think not for me;

but other challenges I soon will see

Paint a picture, arrange flowers in a vase,–

write a poem – these I consider to be my “race.”

We all have a different “races” we face each day;

but stay in bed, those races won’t come our way.

So stiff on one side, ache on the other,

but think of the “miles” we have still to cover.

Yes, it all comes when the sun peeks in at us

and no matter the ills, “just don’t make a fuss…”

The world is our canvas to paint on each day

So get out of bed and be on your way!

Dee Dee Vickers

Georgetown, Texas

January 5. 2012

Untitled

by Natalie of Sunny, With A Chance Of Clouds

To protect a mind too fragile.
And determined by those misguided,
There is a purity that should remain unaffected.
If innocence and love could be spared.

And even though good intentions are meant,
The disadvantage comes to the one.

To become shielded,
Is no escape from that which can not be erased.
One shielded remains confused.
And is convinced truth must be avoided.

One shielded remains convinced...
A running away from any hints of truth is a benefit.

Unfortunate are those forever troubled.
Running away to shelter themselves,
A lie to comfort.
When truth is not enough,
Or which truth hurts too much?

You Can't Be Too Strong

by Marc Stecker of Wheelchair Kamikaze

One of the great paradoxes of dealing with MS: it's a disease one of whose hallmark symptoms is weakness, yet it demands the utmost strength from those dealing with it. From the psychological impact of the debilitating nature of the disease itself, to the shifting landscape of compromises and adjustments the patient must make in an attempt to maintain some semblance of normalcy, to the frustrations of dealing with an often maddening medical infrastructure, to the well-intentioned but misguided efforts of friends and family, to the sometimes heart wrenching indifference of the world at large, MS presents hurdles and challenges that require a measure of fortitude, grit, and endurance that most suffering from it never imagined they possessed. And yet as a group MS patients soldier on, displaying quiet courage and the hearts of lions.

Those suffering from the relapsing forms of the disease must deal with an illness ever lurking in the background, waiting to strike once again and leave them reeling. When each new attack finally subsides, often left behind are lingering symptoms, some weakness here, a little cognitive dysfunction there, distressing calling cards serving as permanent reminders that, despite all outward appearances, trouble resides within. Patients bestowed with the wonderfulness of progressive disease get to experience the pleasure of watching themselves circle the drain, day by day, month by month, year by year. Like the gradual shortening of days from July to December, the change barely noticeable on a daily basis but quite dramatic over the long haul, the disease creeps along an almost imperceptible pace, molehills becoming mountains with the passage of time. The slow but steady drip of the disease can lull one into to a false sense of security, until the guttural realization strikes that some physical action done without a thought only last year has now become cumbersome at best, impossible at worst. Yes, you can't be too strong.

Despite the obvious mettle needed to meet such challenges, many patients castigate themselves for their inability to withstand the ravages of the disease, disgusted with the fact that sheer force of will cannot beat back the onrushing tides. I have a close MS friend who every day fights through crippling spasticity so excruciating it often literally brings him to his knees but still manages, using a variety of disability aids and mobility devices, to put in his day at the office, sometimes forced to drive by using his arm to physically lift his leg on and off the gas and brake pedals (not recommended, by the way), compelled by his overwhelming desire to provide for his family and not give in to the disease. By day's end he can barely make it back into his house and onto the couch, scarcely able to lift his head, but instead of acknowledging his extraordinary efforts, he beats himself up over his perceived lack of toughness, his powerlessness to simply put a stop to the beast that so insistently ravages his body.

I recognize this same tendency in many of the patients I'm in contact with, and at times in myself. I put off the purchase of a power wheelchair for far too long, unwilling to acknowledge my tremendously obvious need because of the complicated psychological interplay of ego, self-image, and sensitivity to how I might be perceived. I sentenced myself to house arrest in a foolhardy effort to maintain an inner illusion of strength, when in fact true strength was only achieved when I finally gave in and reconciled myself to my need and situation. In a kind of mental jujitsu, what I thought was strength was actually weakness, and in turn, the very symbol of weakness, the wheelchair, became testament to a moment of strength when I finally let go and accepted my new normal. Yes, you can't be too strong.

Apart from the strength needed to deal with the disease itself, navigating through the labyrinthine and often counterintuitive tendencies of the modern medicine machine can test the determination of even the most valiant among us. Instead of making things easier on those suffering from chronic disease, it sometimes seems like the deck has been intentionally stacked against us. Trying to make sense of the never ending stream of research and theories about the disease can be mindbending. MS is autoimmune! MS is infectious! MS is caused by faulty veins! It's all the fault of genetics, toxins, vitamin deficiencies, dietary imbalances! Why not throw in out of balance humors, or unfortunate astrological alignments? Does anybody know what the frack they're talking about? What seems crystal-clear one minute is thrown into doubt the next. Up is down, down is up, and all the while I still can't use my right arm and leg, dammit!

The human tendency to become emotionally wedded to a particular idea or orthodoxy often pits patients against patients, in never-ending circular arguments that ultimately may only serve those who are all too willing to make a buck from our compromised circumstances. We must deal with pharmaceutical companies mandated to be more concerned with the bottom line then with patient well-being, and with doctors who are very often under their sway. Never is it more evident that modern medicine is a business than when you realize that most of the MS research news is reported on the financial pages of the newspaper. Desperately searching for something, anything to hang our hope on, we can be easy prey for practitioners of "alternative" medicine, who may be charlatans or saviors, often indistinguishable when cloaked in the fog of the ongoing battle and blinded by increasingly desperate circumstances. The constant clutter of contradictory and conflicting information can seem impenetrable, yet precisely because of this information overload it is imperative that we attempt to keep ourselves informed and clear headed, in order to self advocate in an environment that demands it. Yes, you can't be too strong.

We suffer through the indignities heaped upon us by miserly insurance companies and incompetent practitioners. Can there be a more surreal experience than having to fight with an insurance company drone to try to get an approval for a drug that has the potential to kill you? When I finally capitulated and agreed that I needed a wheelchair, I was greeted by wheelchair vendors who quite blatantly tried to pawn off products that obviously did not suit my circumstances but would do the most to fatten their commission checks, and by insurance company rules and regulations clearly designed to win a battle of attrition in the expectation that a needful patient will simply weary of the fight and take whatever is offered. In order to get a chair with qualities that would enable it to hold up under the rigors of the streets of NYC, I had to repeatedly appeal insurance company decisions, and to whom do those appeals go? Why, the very same insurance company, of course! After months of constant screaming battles, and with the help of the physical therapy staff at my neurologists office, I was finally granted an approval for the appropriate chair, a device the thought of which, at the time, left me slightly nauseated. It might have been easier to try to part the Red Sea.

In closing, I'll relate a story that another dear MS friend of mine recently told me. She requires home health aides to help her through the day, and a few weeks ago asked one to fix her a can of soup. My friend directed the man to the cupboard that contained the soup can, and to a drawer that held a good old-fashioned manual can opener, the kind that clamps to the edge of the can and then opens it through the action of the user twisting a rotating handle. The aide picked up the contraption and held it in his hands, stupefied. Somehow, this middle-aged man had never before even seen such a can opener, a device I believe I learned how to use when I was about five years old. In startled disbelief, my friend had to instruct the aide, in step-by-step fashion, exactly how to operate the befuddling instrument. When he was done, the aide explained to my severely disabled friend that being a home health aide was only his "hobby", and that he was a financial planner by profession! Given the bang up job the financial wizards have done with the world's economy, it's little wonder a manual can opener fell far outside this man's power of comprehension. Geez, you think the guy might be better off taking up birdwatching or stamp collecting, benign pastimes in which his gaps in rudimentary knowledge might not negatively impact the day of a sick person?

Honestly, you can't be too strong…

This concludes the 105th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on January 19, 2012. 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, January 17, 2012.

Thank you.

Comments for this post.

MS may talk out of turn, but I don't have to listen

noreply@blogger.com (Lisa Emrich) — Mon, 09 Jan 2012 15:48:00 +0000

Complete with a little "Blue Danube" waltz, the National Gallery of Art Orchestra celebrated the New Year in concert yesterday. The literature was light and flowing, quite uplifting, and fun to listen to. The concert was filled with Mozart works including the Overture to Marriage of Figaro, Piano Concerto No. 17, and the Linz Symphony. Our guest conductor served as the piano soloist, or maybe it was the other way around.

Most of the pieces scheduled only used two horns so I had quite a bit of time to sit back and listen during the rehearsals. If I wasn't sitting in my seat waiting my turn to play, I was listening from the audience. It's always a treat to be able to listen to the group from the front. The sound is much different than what is heard from the fourth horn chair.

If you've never been to a concert at the National Gallery of Art, we often perform in the West Garden Court which is full of marble and harsh, hard surfaces. Sound reverberates liberally and echoes through the corners of the room. The result can be lush, but it can also be mush. Very important to be as precise as possible. Unwanted sounds will certainly linger longer than desired which makes details hard to hear at times.

On Saturday, rehearsal began with the larger pieces (which four horns and full brass). Keep in mind that these musicians are a seasoned group. Adults who have played professionally for decades and are hired to do a good job. But it wasn't long until I wondered if we weren't back in middle school. Some of the musicians were creating a constant underbelly of whispering discussion while the conductor was working with other sections of the orchestra. I became amazed at the behavior (misbehavior) of some of my colleagues.

Why the talking? Some of the discussion included a quick - "Where did he say to start?" - or in collaboration - "Do you want to play the off-beats Viennese style or American?" But more often it was just chatter. I was embarrassed by my colleagues lack of respect for the conductor, fellow musicians, and the music. I kept waiting for the conductor to demand everybody's attention...but he never did. Perhaps he was more skilled in ignoring the disruption, or more focused, than I was at the time.

While I was thinking about the effect my colleagues behavior had on my own attention span, my thoughts migrated to MS. Yes, almost every experience or story can have an MS twist. While the sound of voices was low, they were contributing to a constant rumble. There were no shouts or declarations, but it was still a bit distracting and rude (in my opinion).

MS can be distracting. MS can be rude. MS can create a constant underbelly of symptoms which we might end up ignoring in order to stay focused on the positive in life. But when the rumble becomes disruptive, we might dig our heels in and say - "Whoa! Cut it out right now or else...."

Or else. What or else. What can we do about it?

If the disruption is a relapse, we can use an arsenal of steroids. If the disruption is disease progression, we learn to adapt to changing needs and abilities. If the disruption is constant, we can learn to filter it out and ignore it altogether.

In my body, I have a constant "rumbling" of numbness and altered vision. For the most part, I don't pay any attention to it, but I wonder.... What would my body feel like if MS were completely silent? Would a single symptom grab my attention as a lone musician in a concert hall might?

In a way, I like that my MS doesn't have too many soloists. The symptoms seem work more in symphony to create a blend. If my colleagues chitchatting were increasing symptoms, I might have been tempted to throw some steroids at them. But just as the conductor trusted that the voices would be quiet for the concert, I have faith that my symptoms will wane and fade into the background.

The symptoms may always be there, but I don't necessarily have to acknowledge them. Just like middle school children who seek any type of attention, positive or negative, MS always tries to be front and center. Fortunately, I'm the grown up and choose not to look it's way.

National Blood Donation Month

noreply@blogger.com (Lisa Emrich) — Thu, 12 Jan 2012 04:04:00 +0000

What did you do special for New Year’s? Do you have any special traditions? Or do you still need to make a New Year’s Resolution or two?

For years, my father and I had a routine we shared during the holidays when I would travel home from college. We would go downtown into Oklahoma City to the Oklahoma Blood Institute to donate blood. That became part of our New Year’s celebration.

Since 1970, January has been recognized as National Blood Donation Month in the United States. It is a time of year where blood is traditionally in short supply, partially due to the holidays, travel schedules, inclement weather and illness. No matter the time of year blood is always in need.

If you wish to donate, call your local blood bank. Be prepared to reveal your diagnoses and provide a list of the medications you use. If you are not able to give your own blood, you can still contribute by spreading awareness and encouraging others to donate, or by providing a financial donation.

Read this post in its entirety:

Give a Pint. Save a Life. Become a Blood Donor.

Welcome MS Bloggers to the Community

noreply@blogger.com (Lisa Emrich) — Fri, 13 Jan 2012 22:23:00 +0000

Please welcome these new MS bloggers to the community. Some have been blogging for months, but their blogs were new to me. I'm so glad that they've introduced themselves. Hope you will introduced yourself to them in turn. Thanks!

distracted and numb yet steady and optimistic - Kate

My MS Journey - Karen

MS and More - Angie

Living Large with MS -

Laughter, Lightness, and Multiple Sclerosis - Yvonne

Vitamin D and Hypercalcemia

noreply@blogger.com (Lisa Emrich) — Sun, 15 Jan 2012 15:58:00 +0000

When I was initially tested for a suspected vitamin D deficiency, my serum level was 7.8 ng/mL which is practically non-existent! I was having a lot of pain, including very tender bones and achy muscles. In fact, my bones almost felt “squishy” when squeezed. Vitamin D, in conjunction with Calcium, is necessary to maintain bone density. It took two years, close monitoring, and certain experimentation to find the amount of supplementation I needed to raise my serum levels from 7.8 ng/mL to 61 ng/mL.

The amount of supplementation you might need to take varies upon your age, body weight, BMI, skin pigmentation, the season, and amount of sun exposure. I have a larger BMI and do not get much direct sun exposure. To maintain a current serum level of 68 ng/mL, I take 10,000IU daily of vitamin D3 which is an amount considered to be safe based on various studies using even higher levels. (see Hathcock JN, Shao A, Vieth R, Heaney R. Risk assessment for vitamin D. Am J Clin Nutr. 2007;85(1):6-18.)

Please note that you should consult with your doctor and be tested before beginning supplementation or altering current supplementation. Your needs will vary depending upon your current situation.

One concern with taking higher levels of vitamin D, with or without extra calcium, is the development of a condition called hypercalcemia. In a new case study published in the January 2012 edition of Archives of Neurology, researchers share that “overexposure to vitamin D produces symptomatic hypercalcemia, with possible weakness, fatigue, depression, confusion, stupor or coma, polyuria, nephrolithiasis, renal failure, ectopic calcification, conjunctivitis, fever, chills, anorexia, nausea, vomiting, and constipation.” (see Marcus JF, Shaley SM, etc. Severe Hypercalcemia Following Vitamin D Supplementation in a Patient With Multiple Sclerosis: A Note of Caution. Arch Neurol. 2012;69(1):129-132.)

Read this post in its entirety:

Vitamin D Supplementation, MS Patients, and Hypercalcemia

Carnival of MS Bloggers #106

noreply@blogger.com (Lisa Emrich) — Fri, 20 Jan 2012 03:50:00 +0000

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

Gratitude, Anger, Nostalgia, Freedom, Balance

A Small Stone: Jan 13, 2012

by Laura of Shine the Divine

.שַׁלָ נְעָלֶיך, מֵעַל רַגְלֶיך--כִּי הַמָּקוֹם אֲשֶׁר אַתָּה עוֹמֵד עָלָי, ואַדְמַת קֹדֶש-הוּא

Take off your shoes from your feet, the place your are standing upon is holy.

(Exodus 3:5)

I look down at my two seemingly ordinary feet, veined with time standing firmly on my favorite yoga mat, the sunshine yellow one that has traveled many miles in the past to retreats and teacher trainings, to classes and workshops where I too have had the privilege of being called teacher. This mat rolled like a scroll in the corner of my bedroom, waited ever so patiently for my body to be well enough to return to its sticky, yielding surface. Now unfurled lovingly, naked soles press down, I hear a voice resonating deep within: the place you are standing upon is holy—this is no ordinary moment, it is suffused with healing, pay attention, be present.

For one who has struggled fiercely with standing and walking over these three years since being diagnosed with MS, this place is indeed kadosh, holy. I am grateful.

I'm an Angry Bird

by Karen of My MS Journey (MS stands for Miss Sexy, right?)

When I was a bereavement counsellor, I had a client who was "stuck" in her grief and at every session would wail "why me?" As a non-judgemental counsellor it was my job to help her through these feelings but I have to be honest, there was a tiny part of me that sometimes thought "why not you?"

Fast forward a few years and as I face this new challenge of MS I have been all over the place with my feelings, even dipping into a little bit of "why me?" but as I thought of my client - why NOT me?

Of course it is only two short weeks since I was officially diagnosed but since my first Neurologist maaaaaaaaany years ago, the symptoms that I have been experiencing over the last couple of years fit MS so much that I suppose in some ways I had almost diagnosed myself. It's fair to say it wasn't a surprise at all.

The day I was diagnosed was December 22nd and my Mum had flown in from Florida, where she lives, to spend Christmas with us. That night as I was going to bed, after talking it all through, my Mum actually said to me that I needed to take this "more seriously" as it is in my nature to joke (I guess it is a coping mechanism). Well, I have moved on from the jokes and now I am ANGRY!

Even though I had my suspicions I was also hoping it would be something like a trapped nerve or something that could be "fixed". MS can't be "fixed" and each day seems to bring a new sensation and I am getting pissed off at the body that I have exercised and looked after most of the time (with the odd burger and bottle of wine thrown in for good measure) for betraying me.

I lay in my bed at night feeling awful and I picture my brain, wondering what is going on in there? Is more damage being done or are these symptoms a result of the lesions already there?

I am usually quite a happy person and I feel like I am turning into a grumpy, moody, weepy, pathetic person. How annoying I must be to know right now.

I am also quite vain (which woman isn't?) so I wouldn't dream of leaving the house without my full face of make-up (including lashings of the very best under-eye concealer to hide these dark circles) so I LOOK alright to everyone, which of course is the goal when applying the cosmetics. Then I get MAD that they can't tell how ill I feel.

I feel myself feeling frustration towards well meaning friends who tell me that it could be worse or how they know someone with MS that is doing great. I KNOW this is coming from a loving place to make me feel better and I would probably say exactly the same thing to someone if the situation was reversed. I want to say that I am NOT your Auntie Mabel and the reason that MS is referred to as the snowflake disease is that no two patients are the same and will experience their MS in a different way.

Of course, this is what I want to say but I wouldn't because at least these friends and family have offered support and said something. I am so thankful for each of my lovely friends and family who have offered support, listen to me moan about my symptoms (usually for the 100th time) and have never once made me feel like I am putting on them.

The people that have hurt (and angered) me the most are the ones that have said nothing at all but then I guess at times like this you discover who you can really lean on and who really cares.

I know that anger is part of the grieving process and as an ex-counsellor I know that when a person is diagnosed with a chronic illness they may go through all sorts of emotions of grief including denial, anger, depression and finally (hopefully) acceptance.

I am in the angry bird phase right now so I apologise in advance if I am a snappy cow-bag. I hope I don't offend or push you away along the way. I really don't mean to be such a drag.

So, enough about me - how are YOU?

Commencement

by Robert of The Gifts of MS

I went outside this afternoon, to enjoy the finally warm Southern California weather. And I'm enjoying the air, and the sunlight, and the smell of the trees... and I look at the bits of Backyard Project that are undone thanks to not my usual lassitude, but to the ravages of The Disease. A workbench I used to use a lot... but don't any more. Potted plants that I used to care for more assiduously, but don't any more. Sometimes because even walking up to them is difficult, sometimes because standing and dealing with them is difficult, sometimes because both are too difficult; sometimes because standing and dealing with them is (maybe) dangerous or (usually) just plain non-doable.

For all of us, there are Things that were once part of our lives, but are no longer. Things whose time has come and gone. Some of those Things, we left behind because we had no choice—we would have hung with them longer, if we could, but that possibility simply didn't exist (for example, the college we left because we at long last graduated from it, and once you do that, you're outta there). Some Things we left behind because their time had come, and we knew it; and depending on our relationship with them, letting them go was bitter yet sweet, or Not! Soon! Enough!!!

And there are the Things that we would have loved to keep a relationship with. But the Things themselves decided that the time was up. Or, in our case, the whatever-it-was that brought The Disease to us decided that it was time for us to travel a different road; a road without those Things.

Now, what is it exactly, that makes the letting go of some of those Things easy, and some difficult? The Buddhists would call it "attachment," but even if that term explains it correctly, it doesn't really speak to the way those Things are hooked into the depths of our being.

I hated my college for the first two years, I loved it with an amazing love the final two years. I hung around for three years after I graduated from the college (two of those years in the master's program). But eventually, even I had to agree that the time had come for Something New. That it was time to let those Things go, beloved as they had been. And really, many of them, the part and parcel of the Undergraduate Experience, were already gone. They had departed when my diploma was signed, and delivered to me on the day of Commencement. And interesting choice of words, that... not an ending, but a beginning.

And here I am, surrounded by Things whose time—for the moment, at least—has come. And I am facing a barrage of "Commencements." In so many ways... even in the once simple tasks of standing up in the backyard, walking across the back yard. The ways I used to do those little Things... those trivial, quotidian, almost unnoticeable because of their simplicity, Things... for now, at least, they're gone.

Somehow, "commencements" were easier to take when you knew they were coming for years. When you worked your ass off to achieve them. I'm sure there are some who might say that I actually did work my ass off to position myself to travel the M.S. Highway (and I don't mean with regard to the huge amount of weight I've lost) in some sort of mystical, non-immunological/neurological way; that I chose these "commencements" for myself; as Marley's ghost told Scrooge, that I forged this chain link by link and girded it on of my own choosing.

So these are among the gifts of M.S.: Commencements. Delivered daily. Sometimes even hourly.

The past is over. Time to begin the new. The past created precisely what is necessary to deal with the present. We couldn't deal with the present if we hadn't lived through the past.

Which means that the greatest gift that M.S. gives us is the ability to deal with the M.S. Highway.

But oh, the past... the wonderful, wonderful past. Was it really that wonderful? I certainly like to think so...

But as a very wise friend once said, there are many paths to enlightenment; but nostalgia is not one of them.

A Small Stone: Jan 14, 2012
by Laura of Shine the Divine

A small stone: A steel-mixing bowl rings cheerfully as a handful of green peppers meet its surface; animal awareness perceives vegetable and mineral interaction as the ethereal sound of a singing bowl infusing the kitchen with good vibrations.

A pocket full of pebbles: This weekend we celebrate the remarkable devotion and sacrifice of Dr. Martin Luther King Jr. and the many brave souls who also risked and gave their lives rallying around him. This Shabbat, we begin the book of Shemot, Exodus; an ancient journey to freedom that replays over and over again throughout time for nations, for individuals unfolding in unique ways. For me, freedom is not so heroic, but significant nonetheless for my beloveds and me.

Freedom tastes like vegetarian chili simmering on the stove. Vegetables chopped with my two hands, peppers, tomatoes, onions, garlic, cilantro, beans rinsed, cumin and cocoa sprinkled, lime squeezed--slowly...oh so slowly, not only because it is the speed at which I am able to attend to my work, but because this is how I know I am alive, this is how I honor the preciousness of the gift it is as a mother, strength and endurance improving, to prepare a meal for my family. A task that I’ve not been able to do completely from start to finish while standing and all at once without resting in between for four years. Freedom tastes like gratitude. Freedom tastes like love.

Un-tethered...this is the sensation I am experiencing. Released from my computer, my primary connection to the world beyond my windows and backyard for nearly four years. Freedom, I taste freedom as I putter about the house. Each day I MOVE away from the keyboard and 11inch screen to discover, recover, remember what I lived before, what it is to be a human doing, not just a human being. It is the reverse of what many long for, so many people tired of going, going, doing, doing, tied tight to the world beyond windows, yet for me this is a deep, deep blessing. The key will be to find the balance between the two—being while doing. I’m only human after all.

I am not the way I was, will likely never completely regain what has been lost, unless someday a brilliant scientist or team learns how to regenerate damaged myelin, still, I am grateful for the strength that has been renewed at this time and continues to increase daily. Baruch HaEchad. Blessed is the One.

“All progress is precarious, and the solution of one problem brings us face to face with another problem.” ~Dr. Martin Luther King, Jr.

And my thoughts return to balance. I miss being online, visiting my blogging friends who have become so dear to me. I must find a creative solution to balance my time on and offline; a tiny problem as problems go, no comparison to the challenges Dr. King was referring to, but still one I must face. These friendships are real and I do not want to cause more isolation in my life, forget about the kindness and support I have experienced from so many beautiful souls around the world. I don’t want YOU to feel that I have forgotten you or that I don’t care about your wellbeing, because I haven’t and I do. Where there is love, there is always a way…I will find it or it will find me, I have complete faith that this is true.

Well this pocket full of pebbles has grown into a cairn, fitting really, marking great achievements and small, gratitude, friendship, blessings and love.

This concludes the 106th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 2, 2012. 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, January 31, 2012.

Thank you.

Comments for this post.

Forgotten MS?

noreply@blogger.com (Lisa Emrich) — Sun, 22 Jan 2012 16:06:00 +0000

What can make you forget about MS, at least for a short bit? Planning a wedding, of course!

Although we got engaged in October, Rob and I didn’t rush to make definite plans for the wedding. First things first, we needed to choose a date. Well, actually, we needed to decide upon a time of year. I wanted to avoid the heat and humidity of summer and this spring was just too soon. Only one family member lives in my area, so I wanted to pick a time when my immediate family could attend. So those were the first priorities. Just before Christmas, we set that date for October of this year.

Deciding that it would be nice to get married at Rob’s mother’s church, I called the office after Christmas to see if they had our date available. They did. Around this same time I had been researching online for possible reception locations. Amazing to see just how much hotels and country clubs in our area charge for buffet or dinner receptions, especially with that extra, taxable “22% service charge”. Almost criminal. But I did find a place that is reasonably priced and offers several advantages (although without a jaw-dropping view). I inquired as to its availability and learned that they had time on our chosen day (but only in the afternoon, not the evening).

So far this was all preliminary research.

Then, last Thursday during a hair appointment, my hair dresser (whose son happens to have been diagnosed with MS while in high school) mentioned a bridal shop that was only blocks from my home. Seriously?! A bridal shop that I had no idea about? Well, sure enough it was there in a nondescript brown brick building with offices for lawyers advertised boldly on the signage in front. It is the building next to the gas station where I gas up all the time. With no store windows showing gowns of any sort, I still would have never known about this store.

On a whim, my mom and I stopped by just to see what kind of shop this was. I had no intention of trying anything on but just wanted to get an idea if it would be worth it to come back. I had looked at one bridal magazine and watched a few “Say Yes to the Dress” episodes, but other than that I hadn’t even decided what kind of dress I wanted. I also kinda believed that I would not be able to try on any “sample dresses” simply because of my size (being at least 2-3 sizes larger than a sample). I was surprised to see how trying on dresses really works. In under an hour, I had tried on a handful of dresses and picked THE ONE. It was the third dress I tried on. I even picked a veil that compliments the dress perfectly. (I won’t give any more details about the dress than that because Rob doesn’t want to be given any clues and he reads this blog.)

On the same day while heading home from running some errands, I stopped that the potential reception location. Someone was in the office and I took a tour. I liked the feel of the place and thought that Rob might as well. Bonus….the beverage package offered at this location is unbelievable compared to so many other places which charge $20-30 per person for an open bar for four hours. Our cost for the same will be closer to $4.75/person. Crazy, huh? Since Rob wanted to see the place, I didn’t put down a deposit immediately. I met Rob there on Saturday to check it out, but still no deposit just yet.

On Sunday, my mom and I went to a Bridal Show in Washington, DC. Wow, that was exhausting. When we were leaving I noticed that my legs were still working pretty well. I just gotta say that my body must REALLY like having its immune system tweaked and altered. The recent Rituxan infusion was making a difference.

On Monday, I traveled back to the reception location and signed a reservation contract and provided a deposit. We have a place to eat after the wedding. On Tuesday, we were planning to go up to the church to do that same with contract/deposit but that didn’t work out. So on Wednesday, we each brought our respective mothers to the church to get a good look (my mother had never seen this church) and to get on the church calendar officially.

Besides noticing how my legs held out at the bridal show, I hadn’t been focusing on MS-related things lately. I haven’t been writing much at all. I haven’t been reading the blogs as thoroughly as I usually do. I have been pre-occupied.

But here is where MS and wedding plans meet up face-to-face. The location in the church - the parlor - which is set aside for the bride to get read is on the lower floor of the building which is on a hill. The sanctuary is on the upper (ground) floor. There is a stairway which must be negotiated to go from one place to the other. No elevator in this building unfortunately. I asked if there would be a place I could sit for a moment after coming upstairs if I need to. That seemed to be an odd question judging by the look of confusion on the office manager’s face. Then Rob offered up that, “Lisa has MS.” I will be given a place to rest for a moment if need be.

So there you have it. In the span of six days, I….
ordered a dress and veil
booked a reception location which includes catering, bar, and DJ
booked the church which includes the officiant and organist (if they each are available)
attended a bridal show and found a photographer I like but who is booked already
found a cake baker/decorator I think we have a good chance of picking for the cake

Not bad for one week, wouldn’t you say?

Today there is another bridal show in a different location. That same cake baker is supposed to be there and I plan to talk to her. I also want to gather more information on a potential photographer. I have a lead on florist already (and need to call to arrange a meeting), but maybe today I’ll learn more about the flower business in our area. Wish me luck.

Eventually I’ll get back to blogging more regularly. I learned this week that according to Technorati, this isn’t a blog. They have pulled me from their listings after I tried to update just a bit of information related to the blog. So who knew? This isn’t a blog. Go figure.

Hope everybody is having a good January so far. Stay warm and safe. If you've read this far, let me ask. What makes you forget about MS?

National MS Society Provides 18-Month Update on Society-sponsored CCSVI Research

noreply@blogger.com (Lisa Emrich) — Fri, 27 Jan 2012 21:47:00 +0000

As CCSVI Research progress is of interest to many MS patients in our online community, I wanted to make sure that the following information was made available quickly. Here is an update provided by the National MS Society of the seven research projects which received grants almost two years ago.

It is interesting to note that the preliminary results of these studies combined reveal how variable "CCSVI testing results can be depending on a host of outside issues such as water intake, or whether the individual being tested is breathing in or breathing out. These are all issues that will need to be addressed -- especially during proposed clinical trials -- if researchers are going to be able to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process."

For more information on Cerebrospinal Venous Insufficiency, I recommend that you visit CCSVI.org.

Research Teams Report on 18 Months of Progress from MS Societies’ Initial Studies on CCSVI and MS
New York, NY, 1/27/12..Reports from seven multi-disciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS (http://www.nationalmssociety.org/ccsvi) indicate that they are making good progress toward providing essential data and critical analysis as these two-year projects move toward their completion. The studies were launched on July 1, 2010 with a more than $ 2.4 million commitment from the MS Society of Canada and the National MS Society (USA). The ongoing work by the seven teams will help inform the design of an early-phase clinical trial that is expected to launch in late spring 2012 with funding from the MS Society of Canada and the Canadian Institutes of Health Research (CIHR).

The research teams have recruited and scanned a broad spectrum of people with MS and others to build understanding of who may be affected by CCSVI. In addition they are refining CCSVI imaging methods for accuracy and consistency to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process. All of the seven teams are working under approvals from the required Institutional Review Boards in the U.S. or the Research Ethics Board in Canada, a first step established by regulatory authorities to protect human subjects involved in research projects. (Read more about steps involved in conducting clinical research.)

Already more than 800 people have undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.

Representatives of each of the seven funded teams are part of the CIHR’s Scientific Expert Working Group. In November 2011 the Canadian Institutes of Health Research (CIHR) announced the release of a Request for Proposals seeking grant applications from researchers to conduct an early-phase clinical trial in Canada to test the ability of a surgical procedure called balloon venoplasty to improve blood drainage in individuals with MS who have been identified as having CCSVI. The request for research proposals is a collaborative initiative between the CIHR and the MS Society of Canada. The working group will provide leadership and advice concerning the clinical trial, and will continue to monitor and analyze the data from the seven studies and other studies related to CCSVI and MS around the world.

Several teams have presented, or are planning to present, preliminary results at medical meetings. Because the studies employ rigorous blinding and controls designed to collect objective and comprehensive data, the full results of the ongoing research will be available only after completion of the studies which will involve more than 1300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls.

“The research underway is significantly advancing our understanding of CCSVI and what its relationship might be to MS disease process,” notes Dr. Tim Coetzee, chief research officer at the National MS Society. Dr. Karen Lee, Vice President Research at the Canada MS Society, concurs, “We are pleased that our collaborations with the National MS Society and CIHR are moving us closer to the answers that people with MS need about CCSVI and MS.”

Details of ProgressThe funded investigators, who are drawn from a broad range of disciplines ranging from MS neurology, vascular surgery and interventional radiology, report progress in establishing standardized protocols, recruiting and scanning participants and in the development of plans for sharing their findings, as summarized below.

Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario:Dr. Banwell’s team is seeking confirmation for findings that Cerebrospinal Venous Insufficiency is a cause for Multiple Sclerosis (MS). If impaired venous drainage occurs as a key part of the beginnings of the MS process, then venous abnormalities should be present even in the youngest MS patients. The team is now studying children and teenagers with MS to determine whether the venous system is abnormal in a population where the disease process is at a very early stage. Unlike adult MS patients, children are very unlikely to have any age-related changes in blood vessels, and do not have any of the adult-onset health conditions (such as high blood pressure, heart disease, use of medications) that might complicate the ability to determine whether blood flow patterns are due to MS or other causes. Their ultrasound team has received training from Dr. Zivadinov’s group in Buffalo, and has created ultrasound and brain imaging procedures suited to explore venous drainage in children. They plan to assess 30 children with MS, 30 healthy children of the same age, and 30 “graduates” (young adults who experienced the onset of MS during childhood and who received care and prior brain imaging studies at the Hospital for Sick Children). Enrollment began in December 2010 and Dr. Banwell’s team has reported that it is going well. To ensure the highest standards of scientific accuracy, they intend to analyze their findings once all 90 participants have undergone the testing; which will help to determine whether impaired venous drainage is indeed a core component of MS. (Read details of Dr. Banwell’s original study plans.)

Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, AlbertaThe University of Calgary team has initiated a prospective cross-sectional study to determine the association between ultrasonography (US) and magnetic resonance venography (MRV) measures of venous outflow in MS patients. This study will evaluate 120 people with MS (including 65 with relapsing-remitting MS, 20 with secondary-progressive MS, 10 with primary-progressive MS, 10 with neuromyelitis optica, and 15 with pediatric MS) and 60 age- and sex-matched healthy control subjects. To date, 98 participants have been recruited. The main outcome measure will be the proportion of cases and controls with US and MRV evidence of extracranial venous outflow obstruction. Secondary outcomes will include MRI measures of brain inflammation, Expanded Disability Status Scale (EDSS) scores, and extracranial US measures of venous wall thickening and jugular valve competence.

The team published a paper based on the cases of five people who had experienced medical complications after undergoing procedures focused on treatment of venous abnormalities: “Complications in MS Patients after CCSVI Procedures Abroad.” Burton JM, Alikhani K, Goyal M, Costello F, White C, Patry D, Bell R, Hill M. (Calgary, AB) Can J Neurol Sci 2011 Sep;38(5):741-6. (Read details of this team’s original study plans.)

Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison: Official approval of this study protocol was issued on June 28, 2011. The team continues to actively recruit study subjects from a database of approximately 100 MS patients who had contacted them since the study was first announced, as well as from the patient population seen regularly in their MS clinic. Thus far, 17 people with MS and 12 healthy controls have undergone both MRI/MRV and ultrasound imaging. No results are yet available as the study is blinded.

Since the previous progress report, Dr. Field was awarded a $27,000 grant from his institution to further investigate the novel MRI components of this study in healthy controls, particularly with regard to reliability and reproducibility. Specifically, they investigated (1) the use of a novel method to adjust venous flow measurements for variations related to breathing and heartbeat, (2) the use of a novel MRI method for measuring the iron content in brain tissue, and (3) the use of a relatively new, FDA-approved MRI contrast agent (a drug administered intravenously to enhance the visibility of blood vessels on MRI) that can enhance the visibility of head/neck veins and enable the measurement of blood flow through brain tissue. Ten healthy subjects underwent these components of the team’s CCSVI protocol twice, on separate days. Progress made in these studies includes:

The team’s novel approach to measuring venous flow with MRI is able to detect clear differences in venous flow between inspiration and expiration, and demonstrates evidence of expiration-related reflux (backwards flow) in the jugular veins of healthy subjects.
The team’s system of rating the degree of venous narrowing on MR images of the azygous and jugular veins yields comparable results when performed by different individuals.
Their novel MRI method for measuring iron content in brain tissue provides reproducible results that are comparable to previously described methods of iron measurement, with fewer technical pitfalls.
A single dose of a relatively new MRI contrast agent is sufficient to enhance the visibility of head/neck veins and generate reproducible maps of blood flow through the brain. (It would normally require two separate doses of a conventional contrast agent to accomplish both of these objectives.)

These investigations have yielded two abstracts presented or to be presented at national/international imaging meetings:

“Comprehensive assessment of cerebral venous return with MRA: preliminary results.” Wieben O, Johnson K, Schrauben E, Reeder S, Field A. 23rd annual meeting of the “MRA Club” (International Magnetic Resonance Angiography Workshop), Calgary, Alberta, Canada, September 25-28, 2011.

“The importance of the sonographer in the investigation of chronic cerebrospinal venous insufficiency.” Kohn S, Kliewer K, Field AS. American Institute of Ultrasound in Medicine (AIUM) Annual Convention, Phoenix, AZ, March 29-April 1, 2012.

In addition, three abstracts have been submitted for consideration for the American Society of Neuroradiology (ASNR) 50th Annual Meeting, New York, NY, April 21-26, 2012, and two have been submitted for the International Society of Magnetic Resonance in Medicine (ISMRM) 20th Annual Meeting & Exhibition, Melbourne, Victoria, Australia, May 5-11, 2012. (Read details of Dr. Field’s original study plans.)

Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland: Dr. Fox’s team continues to use MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups to evaluate vein drainage. The ultrasound team, which underwent training in the technique originally used by Dr. Zamboni, found several aspects of the published methodology ambiguous, and they have standardized the protocol and analysis to achieve consistent results.

Early on they identified physiological and technical factors that can complicate screening for vein blockages using ultrasound, including that heartbeat irregularities, stages of breathing, head position and pressure applied by the operator could alter results; and that the state of hydration of the subject (whether they drank adequate amounts of fluids) might impact results of several of the criteria used to determine CCSVI.

The team reported at the international ECTRIMS/ACTRIMS congress in October 2011 preliminary results of ultrasound assessments. Pooling the results of the ongoing, blinded study of CCSVI in MS and non-MS controls, they reported results from the first 20 subjects, finding that 6 (30%) met criteria for CCSVI, four subjects met no criteria, and none met criteria for reverted postural control of cerebral venous outflow. Nine subjects (45%) had a flap and/or septum/abnormal valve. Identification of deep cerebral vein reflux depended upon the ultrasound technique. They noted that this finding highlights the importance of ultrasound methodology in performing and interpreting deep cerebral vein assessments. (P1104 – “Ultrasound assessment of chronic cerebrospinal venous insufficiency.” R. Fox, L. Baus, C. Diaconu, A. Grattan, I. Katzan, S. Kim, M. Lu, L. Raber, A. Rae-Grant)

At the same ECTRIMS/ACTRIMS meeting, the team shared preliminary results from an ongoing study of vein structure in autopsy specimens from seven people who had MS in their lifetimes, compared to six people who did not have MS. In this unblinded study, they identified abnormalities inside the vein tubes (lumen) that drain the brain and found a variety of structural abnormalities and anatomic variations in both groups. However, they reported higher frequency of abnormalities in those who had MS (2 abnormalities in 2 out of 6 controls versus 9 abnormalities in 6 out of 7 MS patients). They noted that MR venography may be less effective than ultrasound for identifying these venous abnormalities, and that ultrasound that examines only vein wall circumference may miss some intraluminal abnormalities. (Abstract 134 – “Anatomical and histological analysis of venous structures associated with chronic cerebro-spinal venous insufficiency.” C. Diaconu, S. Staugaitis, J. McBride, C. Schwanger, A. Rae-Grant, R. Fox) (Read details of this team’s original study plans.)

Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario:The team began phase 1 of their project which consists of imaging with MRI the veins of the head and neck of 100 people without MS. MR venography is also being performed to obtain normative data that will allow the team to better understand the normal anatomy and variants of the veins before they begin to examine the veins of the subjects and controls.

So far, they have performed this additional sequence in 85 people and expect to complete the target of 100 within the next 2 weeks. Further, they have gathered MRI studies of 30 people with a specific sequence that allows them to measure the amount of iron in the brain. The iron deposits are being quantified by an MR Physicist.

In order to perform the ultrasound studies of the veins in the head and neck the same way they were done as described by Dr. Zamboni, the team received training in Vancouver from an experienced group who received training in Italy. Two sonographers and a radiologist traveled to Vancouver and received appropriate training on the technique in mid-May.

In early September, the team reported that they successfully started phase 2 of the study recruiting subjects and controls through the Ottawa Hospital MS Research Unit. Since then, they have recruited a total of 30 people with MS (with relapsing-remitting, primary-progressive or secondary-progressive MS) and 30 controls (60 total), who have undergone both a contrast enhanced MRI and an ultrasound of the veins of the head and neck. The team is currently scanning approximately 4 people with MS and 4 controls per week. They expect to complete recruitment and begin analysis of the data by mid February 2012. (Read details of this team’s original study plans.)

Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan:
This team is conducting their study at two centers (UBC Hospital, Vancouver, BC and Saskatoon City Hospital, Saskatoon, Sask.) and the goal is to recruit up to 200 subjects. Imaging protocols have been both developed and tested and the group is very satisfied with the quality of their results. Their ultrasound technologists were trained by Dr. Zamboni to perform the ultrasound testing in a similar way. There is no previous standardized venography protocol for looking at neck veins.

Recruitment is now closed at the University of British Columbia site, and will be closing soon at the Saskatoon site. All investigations are expected to be completed in March 2012. The team plans to do the preliminary analysis by April 2012. Analysis will occur in stages, starting with the catheter venography and ultrasound data, then the MR venography results will be reviewed.

The team reported that the level of interest and response rate remained high throughout recruitment. The UBC site recruited 110. At the Saskatoon site, 70 subjects have been recruited and are at various stages of the protocol. All investigators remain blinded to the status of the subjects and do not have any preliminary results to report at this time. (Read details of their original study plans.)

Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston: The team reports that they have recruited about 82% of the expected study cohort. The cumulative number of volunteers recruited from study inception includes: 10 Healthy Volunteers; 34 Other Neurological Diseases; 22 Stroke/TIA; 12 CIS; 112 relapsing-remitting MS; 44 secondary-progressive MS; 1 progressive-relapsing MS; 15 primary-progressive MS. Of people with MS or CIS, 45 have undergone MR venography with advance MRI. In addition, to date 10 people with MS have consented to transluminal venography, 2 are scheduled for study and 4 have completed the procedure without complications. No therapeutic interventions are considered in these investigations.

Dr. Wolinsky and the team’s MR vascular expert, Dr. Larry Kramer, are members of the MS Scientific Expert Working Group established by the Canadian Institutes of Health Research (CIHR), in collaboration with the Multiple Sclerosis (MS) Society of Canada, and additional team members have participated in the meetings and provided advice to the CIHR as requested.

A summary of the team’s preliminary work was presented as a poster at the international ECTRIMS/ACTRIMS congress in October 2011. They used Doppler technology to evaluate venous drainage in a blinded fashion. They reported that of all participants, 48/162 fulfilled at least one of five criteria for anomalous venous outflow proposed by Dr. Zamboni; 10/48 fulfilled two criteria consistent with CCSVI; none fulfilled more than 2 criteria. There was no significant difference between people with MS and non-MS, or within MS subgroups. They also found no significant differences between MS and non-MS subjects for measures of cross-sectional areas of the internal jugular veins or for venous flow rates. The team concluded that thus far they find less CCSVI than previously reported by other groups. They are now focusing on whether ultrasound can be complemented or supplanted by MRV and/or transluminal venography. (P1108 -- “Prospective, case‐control study of CCSVI with imaging‐blinded assessment: progress report focused on neurosonography.” Barreto AD, Brod SA, Bui T, Jamelka J, Kramer LA, Ton K, Cohen AM, Lindsey JW, Nelson F, Narayana PA, Wolinsky JS (2011). MSJ 17(S10):S511‐2.)

In addition, two abstracts have been submitted for consideration for the 64th Annual Meeting of the American Academy of Neurology to be held in late April 2012. (Read details of this team’s original study plans.)

Going ForwardThese seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The projects were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. (Read more http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=3339)

At this 18-month milepost, the investigators are making significant progress on their overall two-year study goals. Some of the teams are presenting preliminary results at medical meetings, and all have shared technical advice so that the projects can move forward as smoothly and quickly as possible. Their results will help guide the development of an early-phase clinical trial to test whether treating vein blockages may be safe and effective in treating people with MS. The trial should launch in late spring 2012 with funding from the MS Society of Canada and the Canadian Institutes of Health Research (CIHR).

The next update on the work of the seven grantees will be reported in six months.

About the National Multiple Sclerosis SocietyThe National MS Society addresses the challenges of each person affected by MS. To fulfill this mission, the Society funds cutting-edge research, drives change through advocacy, facilitates professional education, collaborates with MS organizations around the world, and provides programs and services designed to help people with MS and their families move forward with their lives. In 2010 alone, through its national office and 50-state network of chapters, the Society devoted $159 million to programs and services that assisted more than one million people. To move us closer to a world free of MS, the Society also invested nearly $40 million to support 325 new and ongoing research projects around the world. The Society is dedicated to achieving a world free of MS. Join the movement at www.nationalMSsociety.org.

About Multiple Sclerosis Multiple sclerosis, an unpredictable, often disabling disease of the central nervous system, interrupts the flow of information within the brain, and between the brain and body. Every hour in the United States, someone is newly diagnosed with the disease. Symptoms range from numbness and tingling to blindness and paralysis. The progress, severity and specific symptoms of MS in any one person cannot yet be predicted, but advances in research and treatment are moving us closer to a world free of MS. Most people with MS are diagnosed between the ages of 20 and 50, with at least two to three times more women than men being diagnosed with the disease. MS affects more than 400,000 people in the U.S. and over 2.1 million worldwide.

Contact: Arney Rosenblat / 212 476-0436
Arney.rosenblat@nmss.org

Our Growing Community

noreply@blogger.com (Lisa Emrich) — Tue, 31 Jan 2012 17:37:00 +0000

Please welcome these new MS bloggers and bloggers who have returned to the community.

Making Calm - Sarah

Shalom Babayit - Tammy

Dumplings Diaries - Sarah

Making Sense of MS - Mustard

Miss Chili's Hot Stuff -

Me and My MS Monster - Hammersgirl03

Ogg's Blog - Michael Ogg

The Mess That Gets On My Nerves - Antoinette

Life's Journeys - Christine

Carnival of MS Bloggers #107

noreply@blogger.com (Lisa Emrich) — Fri, 03 Feb 2012 02:43:00 +0000

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

New Days with MS

Wake Me Up

by Sarah of Making Calm

The dampness is frightening. But not yet. It will seep through and make a rain in my bones, i know. A deep murky mixture of water and rubble climbs slowly up the side of the bed. We are awash on our beds, screaming at swimming buses swinging round like boats. But I am asleep. Through closed eyes i watch. They are collecting at a building. At the base of a hundred steps. A building, once magnanimous, now crumbling. They kneel as water fills its cracks and fissures under a dying sun. A stranger comes to lie beside me. Tired perhaps. But i am irritated. I turn over. I am asleep. Let me go, my precarious dream. Of a damp, wet and dying world…. Let me stay. A drunken awareness tugs at my lids. The expected, pain, finds its way in. Shoots through, pinning down my shoulders, and finds its nest in my hip. I cannot scream anymore. I cannot cry. I am awake. My pupils dilate and contract searching for my will. I dont know how well i will be today. But it is a new day. And it has begun.

daily image: 1/12/12, #779

by Stephen of Captured Light

shot with my new canon s100.

Getting Over the Grief

By Catherine of A Life Coping with MS

There's a general theory out there that everyone who suffers a loss goes through five stages of grief in order to come to terms with what or who has gone. In fact, many people believe these stages are more applicable to someone facing an illness or disease rather than someone who has actually lost someone. And I'm starting to understand why.

Because while I always state, very clearly, that I am still 'me' - of course having MS has changed me and coming to terms with 'Catherine who has MS' hasn't always been an easy ride. There's no doubt in my mind that I've grieved for the me 'before'.

So, in case you're wondering, the five stages are denial, anger, bargaining, depression, and acceptance.

The stages don't always work in this order and a few theories I've had a quick read at also say that they can pop in and out at different times. For me, unbelievably, the first stage I encountered was probably the one most people face last, and that's acceptance.

On diagnosis I was very stoic, determined and I suppose this is because I finally had a reason for the previous months (even years) of feeling unwell. Finally I had a name for everything that I thought I was imagining.

But acceptance doesn't mean that I haven't had days of the other four stages. In fact, I started writing this post some weeks ago when I was going through a 'low' period - I guess that would be the depression stage. And there wasn't anything that triggered it. I simply felt incredibly emotional and teary-eyed. And it was horrible.

Along the way I have also had moments when I've felt the anger bubbling under the surface until I can hold it in no longer, shouting out in pure frustration, 'Why me?' Because I am bloody angry. I'm angry that no matter how hard I've worked, how much love and care I've shown others, that this blasted illness still choose me.

It's often after an angry moment that the bargaining stage takes over. In my mind I can hear myself saying, 'Maybe they did make a mistake. Maybe if I can just be a better person the MS will disappear.'

But in my heart of hearts I know it's going nowhere. I mean, the NHS wouldn't have me injecting myself with very expensive medication if I didn't have MS now, would it?

Ah, and in creeps the denial - without me even realising it.
If only it were true.

The Irony Is ...

by Judy of Peace Be With You

Most people will share
really good or really bad
accounts of their lives.

The daily humdrum
muted play of emotions
does not get much play.

The irony is
we mostly dwell, laugh, and cry
in the commonplace.

The Quest to Reinvent Myself
by TamDe of Shalom Babayit

I was a physical person. Not a rock climbing, landscaping, house renovating, kayaking kind of physical. Rather I was a cookie baking, soup from scratch making, closet organizing,decorating, wallpaper hanging, leaf raking, dog walking kind of physical. I loved the feeling of accomplishment, not so much from "creating", but from "organizing". That was before Ms.

I worked as an optician for over 12 years. It was a career change for me coming from the field of retail. I thought I wanted to "help people". What I discovered was that my favorite part of the job was decorating the frame boards and keeping our desks tidy. I preferred straightening out our work area. Not so much the fabrication of the glasses though. It is a precise skill that uses metal and hard objects to form functional devices. I would rather work with soft fabric and scrunch it to make it fit. While opticians work in millimeters, I would rather measure an ooch or a scowtch. If you sew, you know what I mean! And then, sadly and admittedly, I discovered I was not so much into the "helping people" part of opticianry. The reality is it was more of a my glasses are crooked kind of complaining and whining. Yeah, there were more than a few people who truly appreciated my skills to realign their progressive lenses or reshape their bent frames. I loved the people who gushed appreciation when I simply changed their nosepads. Such a small thing to create huge comfort. But, unfortunately, one "oh shit" would wipe the whole slate clean. The patient who complained her glasses were too big or too small, too blue or too red were the majority of the customers.

I worked in a large office where I could have contact with the MDs and ODs if I wanted to. In general, they tried to project an atmosphere of openness, but for the most part, I felt my questions were irritating them. Oh, not all the docs! Some sincerely appreciated my attempts to help their patients! But again, one oh shit wipes the whole slate clean, and I would become acutely aware that I was cutting into the doctors chair time. Redoes cost money, and it would be a finger pointing battle of who messed up: was the prescription wrong, or were the glasses made wrong? Oh well, such is the responsibilities of every job. No matter where you work or what you do, that is what it means to be accountable.

As MS waged its relentless progression on my body, my left side became weaker. I could no longer adjust or fix glasses. After I fell once, I knew it was time to rethink things. After I fell the second time, my husband became concerned. The true wake up call came one day when the fire alarm sounded. An electrical problem on the 3rd floor of the building caused the alarm to go off. As we all headed outside to a cold winter afternoon, my friend went to get my coat. Others waited while I slowly navigated the stairs. They were worried about me. In reality, this was not good. I knew if it had been a true fullout disaster, they were risking their own safety to assure mine. It was that event that forced me to acknowledge that it was not right for me to continue to work.

It's coming up on one year that I've been home and acquired the dubious distinction of the label disabled. I've spent the year acknowledging the limitations MS has caused. I realize the importance of having a "can do" attitude rather than focusing on what I can't do now. I know I should use this life changing experience to rediscover myself. But I'm not an artist or a writer. I'm not a stargazer or a theologian. I don't have the answer yet to who I am or what I'll do. But I do have plenty of time now to think about it.

In Need Of A Better Disguise

by Karen of Meandering...One moment please

preparing for the day

unsteady hands apply the camouflage for the face

though not deftly placed

obvious ailments are masked

if only the makeup could extend the length of the body

concealing the disabilities

that scream...

she

sick

person

there is no hiding that

~Karen

This concludes the 107th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 16, 2012. 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, February 14, 2012.

Thank you.

Comments for this post.

I tested negative for the JC Virus

noreply@blogger.com (Lisa Emrich) — Sun, 05 Feb 2012 00:24:00 +0000

A patient who tests negative for JC virus antibodies and who uses Tysabri may feel like jumping for joy at this negative test result. However, the the FDA stresses that “patients who test negative for anti-JCV antibodies are still at risk for the development of PML due to the potential for a new JCV infection or a false negative test result.” It seems obvious that doctors should consider testing patients prior to beginning treatment or during treatment if the antibody status is unknown. Patients should also consider periodic re-testing for those who previously tested negative for the anti-JCV antibody as a person might later become exposed to the virus.

For the past couple of years, discussions of Tysabri, PML, and the JC virus have been common in the MS community. Medical professionals have known that a reactivation of the JC virus is responsible for the development of PML in some patients. But until now there had not been a commercially-available laboratory test which would reliably test for the presence of anti-JC virus antibodies in a person’s blood. Now available through Quest Diagnostics, the Stratify JCV Antibody ELISA test is manufactured by Focus Diagnostics of Cypress, Calif. The test is for professional use and by prescription only and is to be performed only at Focus Diagnostics’ Reference Laboratory.

Read this post in its entirety:

The JC Virus Antibody Test Goes Public

Argon Gas Used to Treat G.A.V.E. (gastric antral vascular ectasia)

noreply@blogger.com (Lisa Emrich) — Thu, 09 Feb 2012 00:11:00 +0000

Note: The story told below begins in 2010. My mother is doing better and is about to undergo her 3rd procedure to combat chronic bleeding. Read more details at HealthCentral.

We didn’t realize just how ill my mother was. As my mother walked into the emergency department, her shockingly low hemoglobin (Hb) level was 3.5 g/dL. Normal hemoglobin levels for a woman range from 12.0 to 16.0 g/dL. The nurse confided that she had never seen such low hemoglobin in a person who was conscious much less alert and ambulatory (however weak). The doctor said that such a low Hb level could cause a heart attack.

Hemoglobin is the protein molecule in red blood cells which carries oxygen throughout the body. According to the Mayo Clinic, “a low hemoglobin count is a common blood test result. In many cases, a low hemoglobin count is only slightly lower than normal, isn't considered significant, and causes no symptoms. A low hemoglobin count can also be caused by an abnormality or disease. In these situations, a low hemoglobin count is referred to as anemia.”

Read this post in its entirety:

Chronic Bleeding, Autoimmune Disease, and Blood Transfusions

Love, Relationships, Multiple Sclerosis, and Rheumatoid Arthritis

noreply@blogger.com (Lisa Emrich) — Mon, 13 Feb 2012 00:18:00 +0000

In honor of Valentine's Day, please enjoy the following story about how Rob and I met.

When I met Rob over 6 years ago, I did not ‘have’ MS nor RA. I was just a regular, seemingly heathy, person who was ready to meet someone. Although my medical records did have hints of what was to come, I carried no significant diagnoses.

We were set up on a blind date through a local dating service. Rob’s life and interests were described to me as were mine to him. When we met and compared notes, we both laughed at how we were described to each other. In fact, from that description, I wasn’t quite sure that Rob and I would have had enough in common. But he saving grace was that he had played cello through college, even performing in a regional orchestra. Now THAT was something interesting to learn about. It’s funny….he was told that I was a teacher, omitting the part about my career pursuing music.

Read this post in its entirety:

Love: With and Without Disease

Confusion at the Pharmacy: Unanticipated Copay Assistance

noreply@blogger.com (Lisa Emrich) — Thu, 16 Feb 2012 00:30:00 +0000

Note: Please click through and read this post to the end. I REALLY was flabbergasted and befuddled. :)

There I was this morning at the pharmacy with my mouth gaping open. The pharmacist had said, “You just need to sign here. There is no copay.”

What?! I didn’t owe anything? That can’t be right.

I knew that I needed to fulfill my insurance’s $100 deductible for prescription medications for this calendar year. I even had my credit card in hand ready to swipe through the card reader. Ready to pay the big bucks to bring home my precious one-month supply of Nuvigil (which I take to combat MS-related fatigue on occasion).

“Why is that? I know that I owe something,” I said.

My pharmacist pulled out a brochure which included a plastic “Nuvigil Prescription Savings Card” from the pharmaceutical company. It clearly advertises “co-pay as low as $5 on your prescription refills.” A footnote at the bottom of the front page states that this “offer [is] limited to insured patients only.” Limitations apply.

Read this post in its entirety:

Financial Incentives to Choose One Medication Over Another: The Nuvigil Copay Program

Carnival of MS Bloggers #108

noreply@blogger.com (Lisa Emrich) — Fri, 24 Feb 2012 04:40:00 +0000

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

Editor's Note: Oops, the carnival may be a week late, but some material is timeless. My apologies for the delay. By the way, if you have posts you'd like to share in next week's Carnival, please send me the links.

An Interview with Alessandro

by MBD of Move in Circles

He was surfing the net after dinner. I sat on the couch with my pen and legal pad and said, “Are you up for being interviewed tonight?”

“Excuse me?" He looks up and sees that I'm serious. "No, not really.”

“Okay, but we’ll do it anyway, k? You’re never going to be up for it so we might as well just do it now.”

"I guess.”

“So can I go ahead with my first question?”

Long pause, then he replies, “Hey, I think we should open up a new savings account.”

Me, not willing to change the subject,“So, first question: do I ever annoy you?”

“Sure. When you interview me about stuff.”

What’s the most difficult part about living with MS?

Not being able to walk. Kind of inconvenient.

There’s a lot about MS that people don’t know about. What are some of the things about your disease in particular, since every case of MS is different, that your friends and family may not know?

Heat is my kryptonite. Any relief from heat is like a power-up on Super Mario Brothers. Like getting in a cold pool in the summer, it’s a complete recharge.
I wear a toe separator daily because my toes clench up and it's hard to walk around on curled up toes.
I've been constipated for 4 years. Try that on for size. You can quote me on that. You can print that. [Laughing]. Which also has its benefits: you use less toilet paper.
I get fatigued very easily. I'm tired frequently throughout the day. I could take a nap at any second of the day. Except for at night when I want to sleep. I go months at a time without sleeping through the night.
I hurt myself every time I get into the shower. I can’t lift my leg up and over the bathtub, so I slam my shin into it every time.
It’s also difficult for me to climb in and out of bed because I can’t lift my legs up.
I use a cane on a daily basis, I use a walker sometimes—that’s very new—and I use a wheelchair for long-distance things that would be impossible for me to do otherwise—like exploring New York during our vacation.
I don’t have much balance. Even when just standing still. I could fall over with a strong gust of wind…which is where my walker comes in handy.
I take 7 pills a day.
And I just can’t go somewhere spontaneously. There’s a lot to think about beforehand—like where’s the nearest restroom? Will there be stairs? Is it worth expending all of that energy? You have to think ahead.

Why don't you sleep through the night?

Because I wake up to use the restroom. Four different times. An interrupted sleep is not a restful one.

Other than your trouble with walking, what are one or two other symptoms that are the most bothersome?
Having to go to the bathroom frequently. And twitching.

For those that don’t know, explain a little more about your bathroom and twitching problems.

My brain just doesn't communicate smoothly with my bladder, so it doesn't empty fully, or quickly, and the process just doesn't work like it's supposed to. And the twitching and muscle spasms are caused because the myelin (insulation) on my nerves is frayed. It’s like a sparking or frayed wire, which causes my legs to twitch and spasm. During inconvenient times. Like when I’m trying to sleep.

What’s the best part about having MS? If there is any?

It gives me perspective on life. It helps me to empathize with people and to learn to put myself in other people's shoes. And it has helped me to become more patient, since I am literally forced to go slower.

What are some daily tasks that you dread?
Walking to and from the car. Walking anywhere, actually. Handling sharp objects or hot items in the kitchen.

Do you dread tasks like getting dressed, or getting in the shower?

No, I've gotten over that.

So mostly the big things then?

Yeah. Also walking from the couch to the stereo to turn it off, that’s hard because there’s nothing to hold on to. In general I also dread doing anything out of my comfort zone...anything that would throw me off. I have a routine, for example, always using the bathroom right before I leave the house, and I feel more comfortable going through those routines. I like to know what I'm going to do and anything that would put me off my course is problematic. I need to know what's in front of me.

Do you think that people have a good idea about the daily struggles you go through?

No. It's an accomplishment every day that I get up and live my life. Everything I do—going to work, coming back, getting back up to the apartment is a huge accomplishment for me. Including small tasks that you'd otherwise take for granted. Like, I think about falling when I'm brushing my teeth or with a Q-tip in my ear.

A Q-tip? Seriously?

Yeah. Seriously. And preparing food for myself is a struggle. Walking back and forth from the stove to the fridge or counter, carrying ingredients, with the ever-present thought of falling with food, or with hot stuff and sharp objects.

For those of us without MS, is there a way you can describe what you feel like physically so that we can try to imagine how you feel?

As far as the walking, I think I've pinned it down to comparing it to trying to walk around with cement blocks on your feet that never come off. And you have to go the bathroom—fast—but you've got these cement blocks on your feet. Also, just in general, picture your body not responding to anything that you tell it to do.

If there is one thing you could do on a daily basis that you can’t do now because of your MS, and one thing in general you could do, what would it be?

A daily thing would be, I would run. Even though I hate running.

And even though we hate runners?

Yeah. [We don't actually hate runners, we're just jealous of them].

What about a one time thing?

Learn to surf.

Cause you love the ocean?

Yeah.

What can others do to make life easier for you?

I never mind when people open doors for me. Don't ask me what's the matter with my leg though.

Yeah, but isn't that just a human reaction of curiosity? Isn't that your opportunity to educate people and raise awareness about MS?

Yeah. But I don't always feel like doing that.

Okay, what else?

Don't feel sorry for me, don't treat me any different. Don't ask me if I want a piggy back ride. I know people are trying to help move me, but literally the logistics of the piggy back ride don't make sense for me. I can't jump to get on your back, my legs don't bend to wrap around you, my legs just hang there. It doesn't feel good. It's annoying.

We know you are affected physically by MS, but do you feel the effects of MS emotionally or mentally as well?

Well, not being able to walk kind of messes with your head. That’s a big thing to wrap your head around. Also, people stare at me, and not just because I’m really really really good looking.

How do you feel when people stare at you?

I can’t blame them. You see somebody walking around funny like Frankenstein, as I've been told, you think, “that sucks” or “that's weird.” It's just human nature.

Have you felt that MS has held you back from accomplishing anything these past 4 ½ years since you’ve been diagnosed?

I've wanted to swim in the ocean the couple of times we've been at the ocean, but haven’t been able to cause my legs won’t move. But with your help at least I've been able to get into the ocean. I don’t like not being able to go on walks with you or riding bikes with you.

So mostly physical things?

Yeah. Being a little restricted at events, concerts, baseball games. Even though we've turned that into a good thing with handicap seating.

Are you happy?

Probably happier than I’ve ever been. No, definitely happier than I've ever been.

How do you manage to be so happy despite all of the obstacles you face daily?

Mostly the weed. Joking. Obviously because of you. You not letting me be defeated or down. And just being able to appreciate all of the good things that I do have that make not being able to walk seem minor.

There is a real connection between MS and depression, like any other illness. Are you depressed or have you ever been?

No, I get frustrated. Looking back, early on, maybe I was. I don't necessarily know, but I know mentally and emotionally I'm in a much better place than I was early on in my diagnosis. I don't know how much going through chemo had to do with that. I think it did have to do with getting chemo and how poorly I felt from that. And how up and down I had been physically.

What was the hardest thing about chemo?

Feeling like shit all the time. You just felt terrible.

Any good things about chemo?

I felt fraudulent going into the hospital for my treatments because you're surrounded by people who are literally dying; and I'm just in there because, “oh, I can't walk that good.” It's humbling. Once again, it makes you see there are a lot of people in the world suffering and some of those people don't have any support. It makes you think that you have it pretty good.

Have you ever felt angry or resentful that you were dealt this hand in life?

I was pretty angry for a while. The first couple of years. I suppose I was angry at God and didn’t ever want to go to church.

What about now?

I think I've reached the point of acceptance. There's no point in being angry; it's a lot more fun to be happy.

Do you feel that you have a relationship with God now?

Yeah. I mean, I think I always had before, but I've rekindled that romance. [Laughing]. One time, two times, three times my Savior. [South Park reference].

How has MS affected our marriage, if you think it has at all?

I feel a lot of guilt. To be honest, it's as much your disease as it is mine. I feel like I hold you back in doing things. At the same time, I feel like we've been through a lot of difficult things together and I know I can count on you for anything. We have more of an intimacy. I feel like we've become closer because of it. I feel bad because you've sacrificed for me. You spent your days at chemo with me when you should have been studying.

Do you ever feel like you ever use MS as an excuse not to do something you just plain don't want to do?

My philosophy is that I don't ever want to say, "I can't," but I know I haven't necessarily followed through with that. But I always keep that in my mind. And that's something that I'm always working on. There is one thing—maybe with Saverio—sometimes I’ll tell him I can't go solve a mystery with him because I can’t walk, but maybe, maybe, if I dug down I could muster up some energy and make it. But you know I'm trying to live my life by my favorite quote, “A ship in harbor is safe, but that is not what ships are built for.” But it took a long time to get here. In the past I might not even try.

Is it easier or harder for you now to cope with your disease than it was when you were first diagnosed?

Easier.

Even though you're worse off physically now than you were then?

Yeah. Maybe because you know now that you're gong to struggle and you lessen your expectations. You just learn how to cope. It's not as new; it's frustration but you just get used to it and adapt.

What are your biggest fears related to MS?

Falling down in front of a moving car and getting run over. Falling while holding a knife. Dropping boiling water on myself. Remember the hot gravy incident? And hitting my head on cement during a fall.

Do you fall frequently?

Lately I’ve had a couple more falls than usual.

Are you ever scared that one day you'll be wheelchair bound?

No. Because I had four years to think about that possibility and since I already have a wheelchair for stuff, it's something that you prepare yourself for. At this point I'm not going to think that I'm going to end up in a wheelchair. I'm going to hope that I don't. It's not a fact that it will happen. It's possible, probably probable, but not a fact.

What are your hopes and dreams?

I'd like to go on some fun adventurous vacations with you. Anywhere with a beach, more baseball road trips, Napa Valley. I'd like to just live a fun life.

Is there anything that you have accomplished in the 4+ years since your diagnosis that you may not have thought possible?

I got married. And went on an epic baseball stadium road trip. And swam in the ocean...kind of. Kind of.

Am I annoying you now?

No. I love you.

Alessandro was diagnosed with Multiple Sclerosis in August 2007…two years after we met and 1 year, 364 days after I knew I would marry him. This is the first of what I hope will be several blog posts, which will touch upon his life with MS and the trials, tribulations and triumphs that come along with it. We’ve got lots of ideas and stories to tell…it’s just a matter of organizing our thoughts. Thanks for anyone who reads and who is interested in our story.

This concludes the 108th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on March 1, 2012. 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, February 28, 2012.

Thank you.

Comments for this post.

Welcome MS Bloggers to the Community

noreply@blogger.com (Lisa Emrich) — Mon, 27 Feb 2012 03:47:00 +0000

Chronic - Olivia

Moves in Circles - MBD

msguided journey

me ms and my life

musings of ms

Random Braincells - Carla

Poetic Pause - Carolyn

MS Life is Best Life Cade

One Step Leads to a Thousand - Kerrie

The Life of Heather - Heather

Yvonne deSousa