Brass and Ivory: Life with MS & RA

Carnival of MS Bloggers #103

noreply@blogger.com (Lisa Emrich) — Thu, 08 Dec 2011 23:28:00 +0000

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

Mothers, Love MS, Job Accommodations

Clinging

by LauraX of Shine the Divine

Even life forms we consider to be simple are uniquely rich in their complexity. They cannot survive alone, but must cling to something else for nurturance. Solitude is precious, so too is connection. Finding a balance between the reality of inter-being and our cyclic desire for separation is a dance we are ever engaged in.

I am watching this in the relationships between my two teenage daughters and me, their mother as they become increasingly more independent —- “Mom, are you kidding? (exasperation) Leave me alone!” —- “Mom (in tears) what should I do?” -- a back and forth, not so gentle tug on my heart.

I see this in my own need for assistance from others due to the physical challenges resulting from Multiple Sclerosis and my longing (like my children) to do things on my own, to be by myself, and to figure things out in my own way in order to continue my human development.

There is a healthy clinging, we must acknowledge, in the midst of blossoming into who we are becoming; sometimes it is subtle, other times gripping, still despite yearning to detach, differentiate, be “ourselves,” we inter-are, and that is the way it is.

~~~~~~~~~~

It is official. I am no longer a "cool" mom. Not even to Rosie:-( --almost 15 and for Belin being almost 18, this is not news. Somehow it is harder with the youngest, more surprising, though you'd think it would be the other way around. I am in the thick of it now! I'm not sure exactly when the turning point happened, when I became more exasperating, annoying, irritating, tear-provoking instead of the fun, funky artist mom to be proud of, the go-to hugger and comforter with absorbent shoulders for tender tears (ok that still happens, occasionally). I suppose it has been gradual, and is of course developmentally appropriate. That doesn't make the poison dart comments, eye rolling or extreme sensitivity and misunderstandings of pretty much anything I say any easier to sit with, but having been a teenager a long time ago with the same feelings about my parents back then (we are very close now!) and having taught teens for years, listening to them complain to me (I was still "cool" then, I wasn't their Mom) about their perfectly loving and admirable parents (my peers)...I get it. When I think of all that I know about child development as an educator and my own experience, it IS a relief to recognize that none of this has anything to do with Multiple Sclerosis. While it certainly has an impact on our family life, these are all par for the course growing pains that every family must endure. The really good news, and there is some, is that like all things in life, everything changes...and gauging from my relationship with my own parents, in 10 or 20 years, give or take, this too shall pass:-)

Death of a mother is the first sorrow wept without her

by Heidi of Journey with MS

In the midst of moving and starting a new job, my mom passed away. My wonderful, happy, amazing mother. She drove me crazy, but she always cared 100%. I was her only child, and she cherished me. I don't think I ever realized how much I cherished her until she was gone. It's been 9 days now. There have been 9 days of my life that she has not been on this planet.

I miss her terribly. I would give anything just to be able to talk to her one more time. To hug her one more time. To listen to her ramble one more time. To deal with her pack-rat tendancies one more time.

I love you mom....I hope you know how much.

http://www.legacy.com/obituaries/hartfordcourant/obituary.aspx?n=barbara-j-gutekenst&pid=154426008

STOP FIGHTING YOUR MS. Be a Lover.

by Diane J Standiford of A Stellarlife

A reader asked me to write a post about what it means to "fight" MS. She said it is "...beating the crap out of her..."right now. The phrases "fight MS," "fight Cancer," "fight Hunger," are, in my mind, too overused. Simply put, it would mean to do something to try and stop whatever, from having the upper hand; don't crawl in a corner and say, "I give up. I just will die. This is more than I can do anything to stop." It also is used to imply a gathering of troops to do battle against an enemy. Note, however, that we don't say we will "fight bullying," no, that we say we will, "Stop." Again, stopping that which is hurting us. Why don't we have the slogan, "STOP MS?" or "Stop Cancer?"

The reason we don't use the word 'stop' is because we know that we can not stop those diseases. Only science and medicine can stop a disease. So, with MS, the only option contrary to crawling in a corner and suffering, is fighting. Well, I am a lover, not a fighter. My view is a bit different.

When you learn martial arts, you learn to move with the kick, punch, or throw, that comes your way. In acting class you learn it is the receiver of a slap who moves with the slap before it strikes, as it strikes, like a dance. In yoga, you learn to move INTO each pose, into the tightness, and relaxation will follow. I am not a "MS Fighter." I am a MS Lover. I move with my symptoms to lessen their blow. I look into the mirror and love who I see; if I hated who I see, how could I expect anyone else to love that person?

Within hours of hearing, "You have MS," I accepted that MS was now a part of me. I told my family, friends, and co-workers as soon as I could. If any of them couldn't accept me with MS, then they were not going to remain in my life. Maybe because I am gay and had spent too many years not being, in Oprah's words, my authentic self, this new aspect of me was not about to shove me back in a closet. That was that. It was never an issue. The positive response from my friends and co-workers was overwhelming. But, understand, I didn't need their support to fight MS, I needed their support to LIVE with MS.

Yes, your doctor can give you medicine to help and in some cases stop certain MS symptoms. But nothing stops MS and do you REALLY want to fight with yourself all your life? You think you are exhausted now?! EMBRACE. There is nothing you can't embrace that is a part of you. When MS slaps you, move with it. If it takes away your vision, get free books on tape. If it makes your hands unable to hold a book, grab a magazine. EDUCATE yourself about MS symptoms and make a plan. (My blindness took me off guard and I was scrambling in the dark --pun intended-- to find agencies that could offer ideas for continuing with my life. I learned about free phone services, free books on tape, many, many services as you can imagine. And chances are strong that YOUR MS blindness will go away. Just a punch you can embrace and move with instead of fighting. While legally blind, I continued to work, enjoy books, take walks, even care for my quite ill partner, oh, and BUY A CONDO!) I can't imagine wasted time "fighting" during those days. I had too much TO DO!

When I was too weak to lift a paperback book, I starting lifting a pencil as if it were a 10lb. weight---every day. How embarrassing would that be at work, if you had not embraced your MS? After awhile I could lift a pen, then a rebar chunk paperweight---get the idea? Now, I don't call that fighting MS, I call it learning ways to live with it. Every symptom MS threw my way, I thought up a way to improve what it took from me. Little by little, and all the while building my overall health in all areas. I start with lists. I am a lister. It helps keep me focused.

When you are so depressed about your lot in life, EMPOWER YOURSELF. How do we do that? By first accepting personal responsibility for our lot in life. Look at Christopher Reeves, wow, could there be a worse lot? He blamed no one, not even his horse! Once we stop blaming something else, we can use that energy to focus on how WE can help ourselves. Humans need water, air, and, in my opinion, laughter. We NEED to laugh. Find your inner laugh-a-thon and pursue that. If you can't laugh at yourself, now is the time to change that because MS can be damned hysterical. Going to feed the dog? NO you are not! You are going to KISS the floor! Hello floor, just wanted to touch base! First time I fell I thought it was the end of the world. The last time (so far) I fell I thought it was all over. I cursed the TV! (yeah, that's how bad I felt!) But, I reminded myself that what goes down must come up and that made me laugh. My own silliness made me laugh. One finger typing? SERIOUSLY? Hysterical! My typos are so funny, I often want to leave them!

A killer MS punch? My 'wedding ring' can no longer fit over my contractured ring finger. I just was so down over that for YEARS! Then I looked in the mirror and said, "Diane! Wake up! It is just a symbol." And I figured out I would wear it around my neck. Now, I can't believe I wasted so much of ME by feeling sad about such a simple to change symbol. CHANGE. MS is so changeable, unpredictable---so...since I have embraced it as being a part of me and since I want to love me, I now must love change. Not my natural personality, but wait---how much do you hate to hear, "That's just the way I am!" I always hated hearing that and swore I'd never say it. Well, now I must LIVE it as well. (Walk the talk or roll the goal, as we in wheelchairs say.)

Find a purpose. MS took my job from me. I felt so fulfilled at my job. What was I to do? So much fatigue, weakness, slurred speech, weakness, cognitive losses, fatigue, I KNOW, I'll try a blog. My readers won't know when I type one letter and have to nap or type a sentence then call my caregiver for a toilet break and maybe, just maybe, I can help others with my stories, my ideas, my silliness---and now I am a published author. My sense of purpose has returned. We all need that. Face book has given me a platform to address my political issues and to make new friends. The Internet is a friend of people with illness--no need to ever feel all alone. Make friends.

Fight MS? A waste of energy. Learn how to live with it. Embrace. Love. Educate. Plan. Execute. Laugh. Fall back with the punches, you will be amazed at how few fights your opponent wins!

Ask an MS Navigator: What are job accommodations and how do I get one?

by Kris Graham of National MS Society Blog

We recently received a question about how to obtain accommodations when MS starts to get in the way of doing your job. What perfect timing! I was just about to write my first post on employment and MS …

First, you need to know whether or not the ADA applies to your situation. You can request reasonable accommodation under the ADA if:

You work for an ADA-covered employer
You are “qualified” to do the job; AND
You are a person with a disability as defined by the ADA.n>

ADA-covered employers include private employers with 15 or more employees, all state and local governments, employment agencies and labor unions.

“Qualified” to do the job means that you have the “skills, experience, education, or other requirements” of the position, and you “can perform the essential functions of the position with or without reasonable accommodation.” (See Disability Law Handbook - Employment and the ADA)

Person with a disability, according to the ADA’s definition, now includes most people with MS, thanks to the passage of the ADA Amendments Act and updated Equal Employment Opportunity Commission regulations.

Accommodations can be things like new equipment or changes to existing equipment. Another example is a change to your work routines, such as hours worked. Read a few real-world examples of accommodations that have worked for people with MS.

Two important things to remember about accommodations:

You must be able to perform the essential functions of your job. The ADA does not require employers to reduce essential job functions, but you can ask to change how you perform an essential job function. Usually employers decide which job functions are essential.
Your employer does not have to provide you with your first choice in accommodations. The employer has to provide an accommodation that is reasonable and effective, if available—so be ready to discuss alternatives.

Be prepared! Before you request accommodations, make sure you can answer all of the following questions:

How is MS affecting your job, potential job, or application process?
Why are you requesting accommodations?
What accommodations or changes to your work will be effective?
What information will you need to provide to your employer (or potential employer)?
When should you speak with your employer (or potential employer)?
Who should you involve in the conversation?
How should you follow-up on your request?
What are your rights if things go wrong?

These resources can provide more help and information:

The Win-Win Approach to Reasonable Accommodations
ADA - Your Employment Rights as an Individual With a Disability
Employees' Practical Guide to Negotiating and Requesting Reasonable Accommodations under the Americans with Disabilities Act (ADA)
SOAR (Job Accommodation Network’s Searchable Online Accommodation Resource)

Not sure if your employer is covered by the ADA? Contact your regional ADA Center and the Job Accommodation Network (JAN) to make sure. Both organizations are free and confidential resources. JAN has staff trained in exploring possible accommodations for your particular situation.

If your employer is not covered by the ADA, contact an MS Navigator® at 1-800-344-4867 for assistance in exploring other possible legislation that may protect you.

This concludes the 103rd edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on December 22, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 20, 2011.

Thank you.

Comments for this post.

Steroid Brain Fog and Feeling Downright Dumb

noreply@blogger.com (Lisa Emrich) — Sat, 10 Dec 2011 17:55:00 +0000

When was the last time your joints felt all loosy-goosy? If you’ve got rheumatoid arthritis, that’s probably not something which is in your near-term memory bank.

When was the last time your mind felt all loosy-goosy? For me that is right about now as I’ve got steroid-mush brain.

Rheumatoid arthritis causes stiffness, swelling, and discomfort. It can also cause brain fog all on its own. But this is different.

Due to a recent relapse of my MS, I was given very high doses of steroids by intravenous (IV) infusion, pumping the equivalency of 1000mg of prednisone each day for 4 days. Yes, a full gram of steroids straight into the vascular system. Yikes.

If this sounds drastic, it is really. But it certainly shuts down the inflammatory process in the body. Not only does it stop my immune system from attacking the lining of my nerves, it also brings down the inflammation caused by my RA.

The result? I currently do not have a sore joint in my body. It is very nice. My joints are flexible and loose. Whoohoo! I keep wiggling my toes and swinging my knees just to prove it.

So this sounds wonderful, you say. There’s got to be a catch. Well, there is.

Read this post in its entirety:

Steroid Brain Fog: What's Your Experience?

Do you think you should change treatments?

noreply@blogger.com (Lisa Emrich) — Mon, 12 Dec 2011 17:35:00 +0000

As soon as you were diagnosed with multiple sclerosis, you had many decisions to make. One of those was whether to use a disease-modifying drug and, subsequently, which one to use. You did your research, talked to friends and family, read online forums, and worked with your neurologist to choose an appropriate treatment plan which was right for you.

That treatment plan may have included a disease-modifying drug. What was the purpose of that drug? To slow the progression of the disease, to reduce lesions, and to limit the number of relapses you might have. Together, successful achievement of these goals hopefully prevent you from accumulating physical disability while you are on this MS journey.

But how do you know if the medication is working? MS is such an unpredictable disease with many natural ups and downs that it can be difficult to know if the medication is making a difference.

Read this post in its entirety:

When to Consider Changing Treatments

Physical Disability and MS Progression

noreply@blogger.com (Lisa Emrich) — Wed, 14 Dec 2011 17:38:00 +0000

One of the dreaded words used in relation to multiple sclerosis is PROGRESSION. Much of what we do and hope for is a lack of disease progression over time. It is the reason why we incorporate disease-modifying drugs into our treatment regimen and the reason we hope to limit the occurrence of new symptoms and/or relapses.

When I think of the term progression, a musical composition comes to mind (an obvious connection for a musician to make). However, progression in multiple sclerosis is not like typical tonal progression in a musical composition. In music, chord progressions will have a resolution. There will be a cadence and a well-defined move from one chord to another. Chord progressions are found throughout the composition, many of them repeated several times.

Modulations of keys within a piece will have a point at which you are finally aware that you are no longer in the original key but a new one. When analyzing a piece of music, a modulation will prompt you to look back and ponder where the hints of the new key began and where remnants of the old key no longer appear. I think that progression in MS is more like that musical modulation. Perhaps it happens before you are even aware that it has definitely occurred.

Read this post in its entirety:

Evaluating the Progression of MS: Physical Disability

Being a Bad Patient and Doctor Fatigue

noreply@blogger.com (Lisa Emrich) — Fri, 16 Dec 2011 14:31:00 +0000

My rheumatologist was not happy with me yesterday. Why? Because I skipped scheduling an appointment with her this past summer. And….I wasn’t getting my blood tested every TWO months. I was a bad patient.

She made it very clear that if I wasn’t going to follow up with appointments every 4-6 months and get my blood tested more regularly, then she won’t keep me as a patient. To be her patient, I must be more….responsible. "Understood?" Understood.

She’s a really good doctor and I can understand where she is coming from. She is responsible for my care and if I don’t keep up my end of the bargain, then she can’t do her job. And I’m taking serious medications which need to be monitored (methotrexate and Rituxan specifically). I need to remember that.

Speaking of Rituxan, I went into my appointment yesterday stating that I wanted another round of treatment in January. Before the last time we were going to plan a round of treatment, my rheumatologist said that she wanted to wait until I began to flare before scheduling a round. She wanted to NOT automatically schedule treatment every six months, but to try to spread them out more because the effect of long-term use is still a bit unknown.

So I was trying to spread out the treatment again this time. But...I had been flaring mildly this fall. I flared in July/August after stopping methotrexate for a few weeks so that I could take an antibiotic for a diverticulitis infection. That flare mostly resolved itself by mid-September but it seems that it opened the door for inflammation to come and go this fall.

Did I see my doctor? Well, no. I was waiting to see if the RA decided to get worse or get better. The flare wasn’t outrageous, merely mild and uncomfortable at times, or maybe I was just getting used to it. Rob just had to be careful when he tried to rub my feet so that I didn't wince or yelp in pain.

When I started the Solumedrol in November for the MS relapse, the RA pain and stiffness went right out the window. I felt great. So maybe the RA had been more active than I realized. I should have called my doctor. I probably should have had a round of Rituxan in October or September. Maybe my MS wouldn’t have relapsed if I had done that.

I’ve just been to see so many doctors and medical facilities during the course of this year, especially this fall, that I’m tired. I’ve got doctor fatigue. And the appointments won’t be done for at least another month (due to Rituxan treatments in January and my need to take my mother to several appointments for some treatments she will be getting).

Since mid-October, I’ve had appointments with or for:

neurologist/nurse for 6-month appointment
lab for blood draw
cardiologist to explore persistent “skipping heart beats”
holter monitoring for 24 hours
another cardiologist appointment for echocardiogram and follow-up of holter monitoring results
primary care doctor for annual pap smear (for which it had been 21 months since the last one)
neurologist/nurse for MS relapse
FOUR days of infusion center visits for Solumedrol treatments, followed by steroid taper at home
mammogram (again it had been 21 months since the last one)
another cardiologist appointment for stress test which I passed with flying colors
rheumatologist for over due appointment
lab for blood draw
neurologist/nurse for follow-up after relapse (appointment on monday)
and maybe an MRI if the neuro nurse wants to get a new one; we’ll talk about it monday

That’s 16-17 trips to a doctor or medical facility in 12 weeks (not counting any visits for which I may have accompanied my mom). During this time, I also attended 9 yoga classes (which were held at a hospital-related facility).

No wonder I have DOCTOR FATIGUE!

And it’s not over yet. In January, I anticipate 7-8 trips to hospital facilities between my mother’s needs and my own. It’s going to be another busy month. No wonder I’m burned out just thinking about it all. Being a full-time patient is exhausting.

Now, I’ve got to wrap this up. I’ve got to go up to the lab to have some blood drawn. It’s been two months since the last test and I’ve got to keep up my end of the bargain. Blood tests every two months….or else I lose a great doctor.

Take Care of Yourself Year Round

noreply@blogger.com (Lisa Emrich) — Sun, 18 Dec 2011 19:01:00 +0000

During this crazy time, I’m sure that you’ve been busy trying to take care of things. I was reading Karen Lee Richards’ post 10 Tips for Holiday Shopping with Chronic Pain for some great ideas regarding shopping. She offers up solid advice which includes: make a list, shop from home, consider gift cards, map out your strategy, and dress for comfort. I have successfully followed each suggestion.

You know, Karen has written some of the best posts over the years offering up wonderful suggestions. There was another one, Surviving the Holidays with Chronic Pain, in which she suggested that we gives ourselves a G.I.F.T. during the season.

G - Guilt must go
I - Importance rules
F - Family matters
T - Think ahead

This is such a clever reminder of ways to help prioritize needs and wants, especially in thinking about what is important. Whether it is deciding to skip a party in order to have more “spoons” or choosing to order a pre-cooked meal from the local grocery store to be able to spend more time with family, it is wise to determine what is MOST IMPORTANT to you.

Truly, this is something which we should do for ourselves throughout the year. When living with rheumatoid arthritis or any other chronic illness, what is most important should often be YOU!!

Sometimes it is difficult to make yourself a priority, especially when you are juggling work and family and managing an illness (something which can feel like a full time job). This is something often overlooked, I think, amongst the holiday hubbub. We still have “normal” things to take care of, one of which is our health.

Have you remembered to make yourself priority #1 this year?

Read this post in its entirety:

Making Yourself a Priority During the Holiday Season

Pentagon Bound

noreply@blogger.com (Lisa Emrich) — Wed, 21 Dec 2011 14:07:00 +0000

On my way to the Pentagon to witness my mother's retirement ceremony. Hope to have good pictures to show later. :)

Carnival of MS Bloggers #104

noreply@blogger.com (Lisa Emrich) — Thu, 22 Dec 2011 19:18:00 +0000

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

Celebrating FOUR years of the Carnival of MS Bloggers!

This community began as an attempt to connect the individuals online who were talking about multiple sclerosis on their personal blogs. As a health policy blogger, I had witnessed the power of the weekly carnival to connect persons in the health policy community as well as the medical blogging community. I wanted to do the same for patients and caregivers in the MS community who were talking about any and all aspects of their lives with MS.

The MS blogging community barely had 100 bloggers at the end of 2007. Now there are over 600 listed blogs in the MS Blogging Community. As new bloggers contact me, I update the listing so that everybody can be included. Take a look, even the blog of the National MS Society is listed. You can be too!!

If you have MS and blog about it (even if only occasionally), send me a quick email introducing yourself. Be sure to include the URL of your blog, please. However, I must say upfront that websites/blogs which are strictly commercial in nature will not be listed. If you are promoting a book, a consulting business, or product, I'm sorry...that is not what this community is about.

As the founder and leader of the Carnival of MS Bloggers, I personally read as many blog posts as possible each and every week from throughout the community. Sometimes I will select excellent blog posts to feature, however it is much appreciated when persons submit a chosen post to be included in an edition of the Carnival. Don't be shy, send me your links!

A Special Role?

by Judy of Peace Be With You

We MS bloggers

though quite vocal comprise a

small minority.

If ten thousand blog,

we're only .4%

of world MSers.

In our special role,

should we be spokespersons for

the ones with no voice?

Let your voice be heard. I'm excited to continue the Carnival tradition into our FIFTH YEAR of community blogging. I wish everybody very happy holidays and safe travels this season. Best wishes for a healthy year in 2012.

This concludes the 104th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on January 5, 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 3, 2012.

Thank you.

Comments for this post.

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

Ignore this: N8A93V8GW9AY

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