Wednesday, May 30, 2012

World MS Day 2012: 1000 Faces of MS



World MS Day (WMSD) is the only global awareness raising campaign for Multiple Sclerosis (MS). Every year, the MS movement comes together to provide the public with information about MS and how it affects the lives of more than two million people around the world.

WMSD was launched in 2009 with over 200 events in 67 countries and has continued to grow every year. Last year saw activities taking place in more than 73 countries worldwide! World MS Day 2012

WMSD 2012 is built around the 1000 Faces of MS concept, which puts people with MS at the heart of our campaign. It has quickly become the focal point of our digital campaign, through which we will raise awareness of this year's theme - Living with MS.

1000 Faces of MS was created to bring together stories, messages and support for people living with and affected by MS. It is an opportunity to tell your story, to share it with strangers, as well as friends, and to join the global movement of people working to raise awareness of the disease.

Get involved by creating a postcard and telling us what living with MS really means to you...


Kitchen Tool Contest Still Open - Submit Your Response Now

Only 36 hours remaining to submit your responses in the Arthritis Awareness Month: Tools in the Kitchen CONTEST!!  Prizes to include six "Stress Less" kitchen tools provided by Trudeau.

(Please leave your contest submission on the original contest post.  Thank you.)

Tuesday, May 29, 2012

International MS Patient Summit: Living and Working with MS

On May 24, 2012, a first-of-its-kind MS patient summit was held in Zurich, Switzerland, co-sponsored by the Swiss MS Society and Novartis.  The International MS Patient Summit: Living and Working with MS was a one-day conference to explore the impact living with MS has on employment, society, and working with MS.  Attendees represented 11 European countries, 6 Middle Eastern countries, and the United States.

I was invited by Silja Chouquet, CEO of WhyDotPharma, to discuss how developing MS and RA have impacted my ability to continue working and how a passion for blogging and helping others has opened doors.  I was joined by MS patients and activists, Marlo Donato Parmelee, author, Birgit Bauer, journalist, and George Pepper, co-founder of Shift.MS. 

Four of the 11 speakers who participated in the International MS Patient Summit were MS patients sharing their experience and expertise with an audience of international MS societies, MS patients, and Novartis representatives.  If you read the MedPageToday write-up, you may not have even realized that 1/3 of the speakers live and work with MS while 1/2 of the speakers were female (including the host and moderator).  Even in the world of reporting, age and titles seem to trump personal experience and real-life adaptation skills.

I will share more details regarding the conference in the days to come, but I thought that I’d share the itinerary with you.  I’m told that the 2nd session of the day was the highlight for many attendees.  Not a surprise, as it is often real-life experience which can spark passion and understanding in others.

Staying professionally active with MS: Why it is important
  • Learning from the “Under Pressure” campaign - Christoph Thalheim, European MS Platform (Denmark)
  • Successful case management approaches in multiple sclerosis - Christoph Lotter, Swiss MS Society (Switzerland)
  • Case Study: Erich Knuelle, Ford Werke, GmbH (Germany)
  • MS pilot program, Stefan Schmitt, Novartis (Switzerland)
How to make it happen: Staying active with MS
  • MS, baby and work: The big challenge - Marlo Donato Parmelee, author, Awkward Bitch: My Life with MS (United Kingdom)
  • Freelancing with MS: The flexibility to do what you love - Birgit Bauer, independent journalist (Germany)
  • From a passion to a part-time job - Lisa Emrich, writer, Brass and Ivory, HealthCentral.com (United States)
  • The most pressing challenges of young people with MS in the workspace - George Pepper and Beki Aldam, Shift.MS (United Kingdom)
Successful use of Social Media
  • Social media and MS: A cutting edge approach - Christoph Bornschein, TLGG (Germany)
  • How AISM uses social media to engage with people with MS - Isabella Baroni, AISM (Italy)

**As I said at the end of the day during an open floor session, I am thankful that Novartis is willing to work with individuals such as myself who often tell-it-like-it-is and do not always sing the praises of companies who sell expensive products and provide services to the MS community.  Neither Silja nor Novartis asked me to write about the conference.  Rob (my fiance/carepartner) and I were the ONLY attendees from the United States and Novartis did provide our travel and housing to the conference.  At our own expense, we extended our trip a couple of days.  More stories to come.

Thursday, May 24, 2012

Carnival of MS Bloggers #115

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


Shakes, Battles, and Good Health

by Janie of PasstheMSplease

Several months ago I was sitting at the computer, minding my own business, and the world shook.

It took me a few minutes to realize what was happening since most of the time I am shaking anyway. I got the picture when my dog’s eyes got really big and she howled.

Howling from your dog may not seem like much to most of you, but Buffy NEVER howls. She has a high-pitched, Pomeranian bark, which she uses every chance she gets. Otherwise, except for snoring, she doesn’t make noise. Howling was quite out of the ordinary.

Like most MSers, my hands often shake, legs wiggle and jump, back and arms buzz, etc. I have had times when I was afraid to pick up a glass or try to feed myself for fear of spilling it all over the place. Although this is not an everyday occurrence, it happens often enough to be considered a normal part of MS. When the earthquake happened, it was really strange because I could hardly feel the “extra” shaking that wasn’t coming from something I was doing on my own.

I am on several website with other MSers. It makes me really sad to read that some have quit going out and socializing with their friends. Many of them do not want to embarrass the people they are with by going out to eat and dropping things. Many don’t go to the movies anymore, shopping, or anything in the public.

I know how they feel. I have gone out to eat with my husband and he had to end up feeding me. Although it was a totally sweet thing for him to do, it made me feel so bad. I felt embarrassed, helpless and just wanted to cry. He just ignored everyone around us and kept talking and eating. He is so special!

I have been putting my thinking cap on and trying to come up with things that we can do during our shaky times that otherwise might be hard. I have the following so far, and will think about more:

Shaking spray paint
Shaking orange juice
Shaking salad dressing
Shaking whipped cream

Anyone have more suggestions???!!!

by Lori of 12 December 2008

I'd like to think that multiple sclerosis doesn't have something personal against me. I hate it, but I'm pretty sure that we're not in a fight with each other. My relationship with MS is not a battle. I will not defeat it, just as it will not defeat me. It's a disease doing what it is programmed to do. To call it a fight or a battle or a struggle against some sort of oppressor is to make MS out to be some kind of third world dictator with a huge sense of entitlement and delusions of grandeur.

If (When) I get sick again it will not be because I didn't fight hard enough or because I did not think positively enough or because I didn't go to Poland for "Liberation" or because I didn't go gluten and fat free or any of the other 15 to 20 other "Cures" that have been presented to me in the past three years.

It will be because I have a disease that is programmed to disable me. To grant it human feelings or actions is to, in my opinion, make light of the seriousness of what MS can do to me.

You can't reason, negotiate or put MS into exile or eject it from the community. Doing what is suggested by my healthcare team and taking the daily injection from Big Pharma is not some kind of moral failing. It's working with the best that science has to offer right now for my level of disease progression.

To personalize it, for me, makes it seem as though I am some how responsible for never getting sick again and if I am left blind or disabled or unable to stay awake it is my own fault that I just didn't *Fight* hard enough.

That is more responsibility than I am willing to take on.

Your mileage may vary.
by Cathy of An Empowered Spirit 

 “The body is your temple.  Keep it pure and clean for the soul to reside in.”  ~B.K.S. Iyengar, Yoga: The Path To Holistic Health

When I was first diagnosed with Multiple Sclerosis I was 26 years old and in good physical shape.  I worked in Manhattan and walked 16 blocks from the Port Authority Bus Terminal to my office – in rain or snow or sunshine.  I lived in Weehawken, N.J., a township located along the Hudson River that overlooked Manhattan.  It was a ten-minute car ride into New York City – if by some miracle there was no traffic.  Each day after work, when I returned home to my apartment, I would slip into my workout clothes (no leg warmers or head band!) and pop my new Jane Fonda Workout video into my VCR (for those of you too young to know what a VCR is, it is a video cassette recorder).  The workout kept me in shape, feeling limber and balanced.

I moved to the suburbs after I got married in 1988 and had my son in 1992.  When my son was in middle school I decided to take a yoga class.  I was beginning to feel like my entire body was one tight knot, and the pounds were slowly creeping up on me. I asked my friends for recommendations for a good yoga class, and finally found a wonderful teacher at a local yoga studio. She taught an intermediate class (you know – handstands and all) but assured me she could adapt the more difficult moves to my disability (by then my MS caused my right leg to be totally numb and weakened).  In the beginning my version of the “Downward Dog” (hands and knees on the floor pushing your hips up toward the ceiling with a straight back – it looks like your body is forming the letter “V”) was standing parallel to their full-length mirror with my hands pressed against it, my feet a few feet behind me, feeling the stretch in my calves and feet.  My teacher had great patience with me, and weeks later I finally did a true Downward Dog with the rest of my class!  Once again I began to feel more limber and balanced.

Somehow life got away from me, as it always seems to, with daily responsibilities as wife and mother.  I stopped taking yoga.  Months turned into years without any yoga classes.  I went to a few Restorative Yoga classes at a different yoga studio, but it never felt as comfortable or rewarding.  Now that I am in my fifties, my muscles feel tight and achy all of the time, and getting out of bed in the morning is a daily treat because my legs won’t work the way I want them to – they stiffen up overnight.  I finally – finally – thought to myself that enough is enough.  If I feel like this now how will I feel in ten, twenty or thirty years? It was time to take care of my body again.  It was time to get back to yoga.

A few weeks ago I signed up for a Gentle Yoga class taught by a lovely woman whose class I’d taken a few years ago at my local library.  I nervously walked into the studio with my yoga mat and blanket (dusted off!) and chose my place on the floor.  I began my warm-up by stretching my legs straight up in the air while pressed against the studio full-length mirror, my arms stretched out behind my head on the floor.  After the teacher began class we heard three gentle yoga chimes slowly ring in the air until their sound faded.  We were ready to begin.  I followed my teacher’s instruction for each pose, paying more attention to my breath with every move.  We meditated with each pose, stretched every part of our body and balanced ourselves through deeper breathing. I immediately felt spiritually renewed.  I knew in my heart I was in the right place doing exactly what I was meant to be doing.  Again.

As we age we need to keep our bodies and our minds toned, limber and active.   We need to consider the quality of life we want to have as we grow older.  Three of my grandparents died in their sixties from heart attacks. My mother, like her mother, has arthritis.  Everyone reading this has his or her own set of family genes to contend with.  It may be heart disease, cancer, stroke, diabetes – whatever it may be, we need to think about what we can do right now to try to live a better quality of life. (Of course the reality is that life doesn’t always go according to how we’d like it to, but shouldn’t we try our best to have the best possible life?)  You can consider yoga as I did, or perhaps you’d prefer t’ai chi, or another complementary therapy.  Take a complimentary class first to see if the class you choose is right for you.  Talk to the instructor beforehand if you need answers to any questions you may have – make a list of questions if you need to.  A good instructor should be more than happy to help make you feel more comfortable with their class no matter what your physical needs are.  (Of course please consult with your doctor before taking any class.) Remember, you are taking an important step forward for yourself.  This is a gift you are giving to yourself – the gift of good health.  Namaste.


This concludes the 115th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on June 7, 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, June 5, 2012.

Thank you.

Tuesday, May 22, 2012

On the move

Headed out of town to meet up with some MSers in Europe. Hopefully, I'll have stories to share upon my return.

Monday, May 21, 2012

Do You Pace Yourself Regularly?

Rheumatoid arthritis can make activities more difficult to accomplish.  It can cause severe fatigue and pain.  RA can also complicate how you manage to divvy up your time  each day, much less find time to exercise or stay physically active.

In a recent study, researchers in the Netherlands asked the question - “Are people with rheumatoid arthritis who undertake activity pacing at risk of being too physically inactive?”  (Cuperus, 2012). (subscription may be required) 

“Pace Yourself” - That’s what many of our doctors or physical therapists tell us to do.  Stop before you wear yourself out or cause physical injury.  Don’t overdo it.
Sounds good to me.
Read this post in its entirety:

Pacing Yourself May Be Harmful For RA Patients, A New Study Suggests

Saturday, May 19, 2012

Do you share the positive?

I know that when I share personal concerns related to MS, I get more feedback than when I post positive things about life.  Maybe it’s that we all want to help each other when one of our community members is hurting, scared, or looking for information.

Last month I wrote about increased anxiety which was interfering with my daily life.  I even researched issues surrounding anxiety and arthritis to share with the RA community since the topic was on my mind.  In a way, I used news and published studies to reframe my own experience.

On a personal note, I visited with my MS nurse practitioner and together we decided to adjust my medications.  I’d like to report that I’ve experienced a huge improvement in symptoms and things are mostly back to normal, just in time to spend seven days traveling next week.  Also, today is Day #1 of ten days during which I will not be teaching any music lessons.  This is finally my “spring break.”  Yahoo.

Read this post in its entirety:

Life with MS: It's okay to be okay!! A Gratitude Friday Post

Thursday, May 17, 2012

Online Rheumatoid Arthritis Influencers

SharecareNow names Top Ten influencers in the online RA community.  My friends Kelly Young and RA Guy head the list.  
  1. Kelly Young - RA Warrior
  2. Rheumatoid Arthritis Guy  
  3. Carol Eustice - About.com Arthritis
  4. Ashley Boynes-Shuck - Arthritis Foundation
  5. Dana - At the Water's Edge
  6. Dr. William Shiel - MedicineNet.com
  7. Dr. Scott Zashin - WebMD RA Community
  8. Nancy Walsh - MedPageToday
  9. kvnj - MDJunction RA Support Group 
  10. Lisa Emrich - Brass and Ivory: Life with MS & RA
Hey, did you catch No. 10? 

I'm honored to be included in this list of people who definitely influence, inform, and inspire on a regular basis.  A downloadable infographic featuring RA facts and the SharecareNow Top Ten is available.

From the press release:
 "To be included in the SharecareNow 10 - Rheumatoid Arthritis list, influencers must have demonstrated a consistent impact on rheumatoid arthritis-specific conversations online over the past year. An individual's influence is measured and quantified through a proprietary algorithm based on more than 40 individual metrics, including rheumatoid arthritis relevance, syndication, presence and reach. These influencers are then ranked from most to least influential based on a unique scoring structure."

Now how cool is that?


Wednesday, May 16, 2012

Getting Caught Up...

and then I look to see what task needs to be tackled next.  Unless you want to find 20+ free, downloadable, published, peer-reviewed clinical studies in pdf form, I suggest that you do not google rheumatoid arthritis and physical activity.  LOL. 

Student performances are complete for this spring season.  Young musicians did a great job on the Annual Mother's Day Recital.  Family and friends made up a wonderful audience. As the kids get older each year, I notice that they eat less and less cake.  Reminder to self - must purchase smaller cake next year!!

I'm so glad that MS and RA have not prevented me from being able to continue teaching and inspiring students.  Amazing to realize that I've known many of these young adults since they were in kindergarten (or even younger).  Should I feel old?  Nah.


Tuesday, May 15, 2012

Arthritis Awareness Month: Tools in the Kitchen CONTEST!!

In honor of Arthritis Awareness Month, we are having a giveaway contest here on Brass and Ivory.  Two winners will each receive a set of six selected kitchen tools from the Stress Less line made by Trudeau.

Here are the contest rules:
  • Using the letters from the word RHEUMATOID, create as many English words as you can.  Each word must have at least 6 letters and each letter in the word RHEUMATOID may only be used once.
  • The persons who come up with the most 6+ letter words will win the giveaway.
  • In the case of a 3-way tie, words duplicated on each list will be eliminated and the persons who then have the most unique words will win.
  • Please leave your list of words in a comment below this post.  I have turned on comment moderation so that no responses can be seen until after the contest is over.
  • All responses must be in by May 31, 2012 at midnight Eastern Daytime Time.  
  • The winners will need to provide a mailing address and phone number so that the sponsor can mail you the prize.  Shipping is complimentary.  (You may send your contact information to me privately.  I will share it only with the contest sponsor and no one else.)
  • You do not need to have arthritis to participate.  You do not need to purchase anything to participate.  You must be at least 18 to participate.
Disclosure: I received a set of the same six kitchen tools to test and keep at no cost to me.  The following is a description of the new line of kitchen gadgets and a brief description of my experience using them so far.  More detailed product information can be obtained on the Trudeau website where videos of the products in action are available as well.
"Trudeau is proud to introduce its exclusive new Stress Less line of kitchen tools designed to reduce the strain on hands and joints. Ideal for those with arthritis or limited hand dexterity, these products are great for anyone looking to make everyday kitchen tasks easier than ever. Each item comes with a lifetime warranty."

Stress Less Easy Grind Pepper Mill (valued at $34.99)

I really enjoy freshly ground pepper.  This pepper mill is BIG at 7.48 inches tall and comes full of peppercorns.  When I first tried the grinder, I could hardly turn the handle it was so tightly adjusted.  Pepper ended up on the counter top.  Loosening the adjustment knob helped a great deal while also producing a coarser grind (which I like).

Stress Less Easy Grind Salt Mill (valued at $34.99)

The salt mill is basically the same grinder as the pepper mill, however the handle can be turned in either direction to obtain more finely or coarsely ground sea salt.  Again play with the adjustments to find your desired balance.  When I first tested the salt mill, I couldn't even see that salt was coming out of it, the salt was so fine.

Both mills are made of light weight material, however the pepper and salt stored inside make them feel a tad bit heavy.  The wide-swinging arm on each grinder means that your elbow rotates rather than your wrist which may be helpful for some users and more difficult for others.  It depends upon your personal situation.

These grinders are too large for the spice rack next to my stove.  We'll see how long they get to stay on the not-so-large counter top next to my stove.

Stress Less Cheese Grater (valued at $19.99)

Can I confess than I've only enjoyed freshly grated parmesan cheese in a restaurant?  I haven't even owned a cheese grater in probably 20 years and I learned that hunks of parmesan cheese are expensive. 

I had to experiment cutting a piece of cheese to find that right size/shape which would fit under the flap of the grinder.  I also learned that the grated cheese comes out better if you put pressure on the flap while rotating the arm.  Unfortunately, my hands are not quite large enough to do this comfortably.  There may be a trick to it which I didn't figure out.  But freshly ground parmesan cheese does certainly taste good.  I will definitely have fun repeat testing this item.

[Note: I finally decided to watch the product video and saw that the demonstrator held the cheese grater in a different manner than I had.  I'll have to try that next time and see if it doesn't make using the grater more comfortable and easier.]

Stress Less Garlic Press (valued at $19.99)

Garlic is a must-have ingredient for dishes such as my favorite chicken noodle soup.  Rather than using a garlic press I purchased in college, I have been using a Ulu knife and bowl to chop and dice garlic cloves.

In contrast to the other items in this set, the garlic press feels very substantial in your hand as it's made of metal rather than light-weight plastic.  Very sturdy feeling especially as compared to my floppy plastic garlic press from college.  However the holes are much smaller on Trudeau's press which may or may not be preferable for some people.

This was one item which was quickly cleaned up and placed in the kitchen drawer to replace my older garlic press which will find its way into a donation box or garage sale.

Stress Less Safety Can Opener (valued at $19.99)

I grew up in a house with an electric can opener and use one now.  It was only in college and during power outages that I have had to use a manual can opener, the kind which requires lots of twisting motion in the wrist.  Wow, manual can openers have come a LONG way.  I had no idea.

I had to think logically a bit to figure out how to attach this opener to the top of a can, but once I did it was simple.  I used a can of peaches for testing.  Like the description says, there were no sharp edges created and the little pliers on the side of the device made lifting the cut lid easy.  I even replaced the "lid" back on the can and put the peaches in the fridge and plan to eat more today or tomorrow.

Stress Less Pizza Cutter (valued at $12.99)

This pizza cutter is HUGE.  I haven't used it yet but it looks to be rather effective although intimidating.  To be honest I haven't taken the packaging off because I didn't want to expose a sharp blade just yet.  I'll have to figure out how/where I might want to store this item before getting it out to use.  If I had a drawer in the kitchen devoted only to larger kitchen utensils and/or knives, it would be an easy decision.  But instead I have a really big pitcher/bowl on my counter in which these types of items are stored.  There is a very positive review of this pizza cutter on Amazon if you are curious enough to read it.  (I'll let you look it up though.)

I debated for over a month about whether or not to host a product giveaway.  But then I decided that being able to share the opportunity with readers was nice all around, especially for those who may have limited strength and dexterity in their hands.

Please leave your contest submissions below.  Happy word-creating!!

Friday, May 11, 2012

FDA vs. CCSVI: The Safety Alert Has Good Advice

How do you get the world to take notice of a controversial theory and treatment regarding MS and narrowed veins?  You get the FDA to issue a safety warning.

Only if you were completely separated from the online MS community yesterday did you miss the alert coming from the FDA regarding Chronic Cerebrospinal Venous Insufficiency (CCSVI) and the "liberation procedure" used to open narrowed veins.

CCSVI has been discussed widely throughout the MS community since mid-2009 (yes, even before the Canadian news picked it up in October or November that year).  There has been a huge firestorm of patient advocacy which has pushed for treatment...and research...for CCSVI.

True that there are three documented cases of patients who have died following CCSVI treatment, two involving stent migration following early treatment/experiments in California.  Last April, a Canadian woman died five days following treatment in Costa Mesa. 

The FDA announcement does not reference any NEW cases of death, but that will not matter to our friends, family, and coworkers who are going to be asking us (or warning us) about the controversial theory/treatment.

The bottom line of the FDA announcement includes:
  • a recognition that more CCSVI research is needed, 
  • patients should thoroughly evaluate the risks before undertaking any new treatment, 
  • doctors should be aware of CCSVI and the balloon angioplasty treatment, and that 
  • patients and doctors should stay in close communication regarding any treatment decisions.
 These are all good words of advice for any health-related decisions we make.

 Read this post in its entirety:

FDA Issues Safety Warning on Controversial CCSVI Treatment

More Brass and Ivory posts discussing CCSVI

Thursday, May 10, 2012

Carnival of MS Bloggers #114

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


Powerful Food, Pseudoexacerbations, and B/B Dysfunction


by Webster of halt stop forget relax

I imagine that many of you with MS deal with the dreaded B&B issue; not the second B - Bladder - which gets lots of attention. We either pee too often, or not enough, or get UTIs all the time, or wet our bed, or our pads, or ourselves. But the first B - Bowel - is the one that rarely gets talked about, and when it does get talked (or written about in neat little pamphlets explaining the various symptoms of MS that may affect us) it leans toward one end of the spectrum -- constipation. Oh, the dreaded bloating and feeling that you have to take a dump, but you just can't.

It doesn't tell you that constipation can be so bad that you need to see a gastroenterologist to find ways to manage it. Like taking doses of various meds, laxatives, eat more fiber, or even using your fingers to pry the stool from you. Oh happy, oh joy. Of course, you know you might be able to go if you just drank enough water to wash things out, but when you do that you can't control the other B [Bladder] (see paragraph one.)

It also doesn't tell you about the other problem: incontinence. Yes, that kind of incontinence. Going without warning wherever you might be. I have known someone to whom that happened - in a high end department store, no less. The sales clerks were very kind to her and led her to a private bathroom so she could clean up, and brought her a change of clothes. Yes, they were very kind indeed. She never set foot in that store again.

They don't mention that in those pamphlets. N'uh uh. And another woman told me that she was in a mall when it happened to her; suddenly it started running down her leg. She said she never wanted to be a runner, but she did that day. She was mortified, and lucky too, in a way, because though  she left a trail of sorts, it just led to an empty parking spot. She retained her anonymity, at least.

What if the problem you have is that you can't feel when you have to go until, well, until it's actually TIME TO GO? And what if that happens when you're in the middle of a dream that starts telling you to get to a bathroom ... any bathroom ... like right now? And you wake up in a stupor, and you can barely move your legs because the blankets were a little too warm and you try to stand up, and you can't? You try and you try and you keep falling back onto the bed, and you start going and you know you can't control it? What do you do? This is no nightmare; well, yes it is, it is a nightmare, and this nightmare is part of MS. This is what happened to me the night before last.

So I look around to see what I have nearby that might save the situation. I find one of those thin blue plastic absorbent lined pads that they use at every urologist appt. [Don't mock me- I think it's foolish to  let all that Dr. office stuff go to waste - so I bring it home; you never know when it might come in handy] This seemed like the perfect thing to use it for - to catch my poop unmentionable bits so they didn't get all over my sheets. I turned to lay on my side and managed to get it beneath and behind me. My sheets were saved; I just lost my dignity as I had to call my husband to help at that point. I had no TP. I couldn't clean myself. I still couldn't stand. I was exhausted. I just wanted to cry but couldn't thanks to my antidepressant.

I needed more sleep, so after DH cleaned things up (he's so good, he takes these things in stride), I took a long nap, after which I was able to (barely) stand, at least enough to use a walker to go to the bathroom, take a shower and get dressed.

MS just keeps getting better and better. I know; you don't have to say it, I was happy to share.

[Here is more information regarding bowel dysfunction.]


by Yvonne Sousa

Kale
Kale is the new black
I cannot put it off any longer. For almost forty years I have been shirking my vegetable consuming responsibilities and now it is time to face them. Don’t get me wrong, I would try to lean towards healthy eating often enough. If I decided to treat myself with a bit of fudge I always went for the pumpkin or cranberry variety to get some of my fruit requirement in.

When picking out ice cream flavor I would choose a vanilla base- vanilla being a type of bean. If went out to eat and was asked which side I would like with my entrée I would pick the French fries to get potatoes (a veggie after all) in with the meal. And, of course, I never held the lettuce, onion, or tomato on my burger. The pickles I would toss aside, you can only go so far on the health kick.

But for some reason all of the hard work above was not enough. Apparently I needed to take a more thorough and active stance on eating vegetables in their natural form. I have been told that they are a necessary part of the diet and eating more of them will help my health and my BMI. But as someone who has taken great pains to avoid them whenever possible, where to begin?

I like the idea of corn- well cornfields anyway. They present such a nice image of middle-America and kids with overalls and ribbons frolicking in the fields. But a super healthy cousin who has a small farm in her backyard (too weird, even for my family, a farm in Massachusetts,) informed me that corn is now the root of all evil.

Seems, she insists, that we Americans eat too much corn and give too much of it to our livestock and that is why we are falling apart. I guess that is good news. It is only the idea of corn that I like, the actual stuff is icky.

Ok, I can handle a salad. I will go with that. But no, it turns out iceberg lettuce is really just a big clump of green water. It is not that healthy, the experts are starting to say.

I was about to give up when a friend directed me to Dr. Terry Wahls website that shows a super good-for-you eating plan, designed especially for people with multiple sclerosis. At first, it was terrifying. Dr. Wahls wants you to eat nine cups of green leafy vegetables a day! That just seemed insane and totally overwhelming.

But I was committed so I continued exploring. One of the veggies she recommends is spinach. Well, I can kind of deal with that. Especially if I use the bagged, dry spinach and load it with dressing in order to pretend it is salad. That might work for me. The wet stuff Popeye used to chug is out of the question but maybe I could accept the dry stuff.

Then Dr. Wahls said something wonderful, something I could totally work with. It turns out that kale is a green leafy full of all kinds of nutrients and good stuff! Wow, I thought only Portuguese people knew about kale.

And I had no idea it was a vegetable! Is Dr. Wahls sure about this? I always thought kale was just a soup additive that you got from your grandmother’s house or your cousin’s yard (oh yeah, a farm, now I get it).
Portuguese flag and ball

This whole time it seems we Portuguese folks were already on the health track! I did some more research and it turns out that kale is the new black, meaning, it is the new super food. And since it is super good for ms’ers, it is the new orange as well. Yay!

It shouldn’t surprise me that my Portuguese friends and family were leading the way in this regard. Didn’t our Brazilian cousins discover last year’s new super food- the Acai berry? Who knows what we will discover next? Maybe the delicious Portuguese pastry trutas are the next super food? Why not? Trutas are filled with sweet potato so there you go! We Portuguese folks have now discovered three new super foods.

What about codfish cakes? The poor cod is one ugly fish but he is a fish and so maybe filled with good proteins and stuff. Hey, I bet he eats kale too so if you eat codfish cakes you might be getting protein AND a vegetable.

red wine
And then there is the wine. I don’t care what the French or the Napa Valley people say, the best wine comes from Portugal. And, research shows that red wine is really good for you. The experts suggest drinking it in moderation but I know a lot of other experts that drink it all day and they seem pretty healthy. They are pretty vocal and animated at least.

I guess my dad knew what he was doing when we visited his homeland when I was twelve and he wouldn’t let me drink American soda. “You are in Portugal and will drink wine like all the other Portuguese kids!” I thought he was being weird. Turns out, he was just worried about my health.

Encouraged and energized, I set out to start my new healthy eating plan and the world fell into place! A nice, hot bowl of kale soup filled with all things good. Vegetables- kale-who knew, potatoes, and a tiny bit of carrots to give the soup some extra color (carrots are no longer one of the best veggies and I don’t want to muck up the soup up too badly), beans-this soup just gets healthier and healthier, linguica- protein, thank you, and salt pork.

I don’t know too much about salt pork- is it a vegetable too? Even if it is not it just adds a bit flavor so how bad can it be? Red wine, some Portuguese bread- hello-grains, butter- dairy of course, codfish cakes as a side- all kinds of health benefit there, and trutas for dessert. Repeat this meal nine times a day. I love Dr. Wahl. This is going to be a cinch!


by Sarah O

Don’t you sometimes have that feeling that you know exactly what your body is going through, what the problem is and where the problem is. Sometimes you really don’t have a clue. But sometimes you just know.


Another one of those weeks when you’re going through so much you don’t know what to control or where to start. Can’t say what triggered it. I do vaguely recall saying that my throat was hurting.  Then it wasn’t. Was going back and forth between the hospital to see an unwell relative. Also took some probiotics to cure a stomach bug. Had a few bad nights of worsening chills. The days were marked with a constant supply of acetaminophen to keep functional. Realized I had low grade fever throughout the day and all the ugly things that come with it. Body aches, dehydration, burning eyes. Sneakily getting worse, my bones started to ache, my limbs became weaker and weaker. “I have an infection.” I can't explain but it felt like something running rampant in my body. Until one day I was sitting at work crying, my bones hurt so bad I felt they would break, I couldn’t put pressure on my legs or carry anything with my arms.  All my other pains crept up with a vengeance.  It was like a symphony, each one trying to out-do the other and make itself heard and noticed. The pins and needles, the stabbing, the aching, the crawling, and the shooting.

I did get a bit scared. It could be the Fibromyalgia, the Multiple Sclerosis, or the Osteopenia.

Of course I went to a few doctors, but we started an antibiotic course on our own.  The white blood cell count was high. Within a few days I was getting back to normal. I slept like a baby and my pains were gone.  I have had many, many bad infections in the past, but never such a bad experience of tiding through it. Okay, so I’ve had some pretty bad infections in my life. They’re really not so hard to wait through. But this time, it was crippling.

Two things: A quick look around the internet shows how MS patients are at an increased risk from infections. The immune system is already compromised and any minor infection can cause serious flare-ups of existing symptoms, sending you hurtling over the edge.

Also, if you look it up, it is suggested that you see your GP if you have Multiple Sclerosis or a weak immune system and develop any Respiratory Tract Infection (RTI). A simple course of antibiotics may pep you right back up. If you want, you may look up detailed studies on the subject; http://www.ncbi.nlm.nih.gov/pubmed/8534384.

As for me, I’ve never been so petrified of coughing, sneezing germ bags in my life. Also, I've started carrying a hand sanitizer, and graciously offer it to as many as will use it !!

[Lisa's note: Here is more information regarding infection and pseudoexacerbations.  When living with MS, developing an infection can cause symptoms to temporarily worsen.  It can be quite unpleasant, but it doesn't affect the course of your disease.]


This concludes the 114th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 24, 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, May 22, 2012.

Thank you.

Wednesday, May 9, 2012

Hormones and Multiple Sclerosis

Pregnancy, menstrual cycles, menopause and MS are the subjects of the following excerpted post:

Are you peri-menopausal or post-menopausal?  Has menopause seemed to effect your MS?  The question as to what extent menopause effects MS is one which has not been thoroughly studied.  Women may talk about MS symptoms getting worse during menopause (Smith, 1992), but does menopause effect the clinical course of the disease?

According to recent research, presented as an abstract at the American Academy of Neurology annual meeting (2012) in New Orleans, menopause does not appear to change the clinical course of multiple sclerosis as measured by brain MRI scans and Expanded Disability Status Scale (EDSS) (Bove, 2012).  Data is derived from a study involving 128 pre-menopausal women living with MS (ages 38 to 46) and 78 menopausal women (ages 54 to 62) as reported in MedPageToday

The two year change in EDSS among pre-menopausal woman was 0.139 points while the change was 0.122 points in menopausal women.  Not a significant difference.  Changes in MRI scans were similar for both groups of women.  Comparison to men living with MS from the same age groups was used in the study to eliminate the influence age might have on disease course in the analysis.
Read this post in its entirety:

Menopause and Multiple Sclerosis: Feel Worse? Your MS May Not Actually Get Worse, A New Study Finds

Monday, May 7, 2012

Arthritis Awareness Month: Show Us Your Hands!

May is National Arthritis Awareness Month.  I missed sharing the announcement on May 1 regarding the release of the 1,000 Hands Poster Project (see below), but it's never too late.  Show Us Your Hands! is an awesome project spearheaded by my friends RA Guy and Lene Andersen.

I ordered my poster last week.

Even better is the announcement that Show Us Your Hands! has released a new photo book Our Hands Can! - "the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis and is being released today in celebration of Arthritis Awareness Month."

Oh how I wish I knew that Lene was doing this.  I would have made sure that my hands contributed in some way.  However, a photo of my hand was part of the original collage collected last December 2011.

Some inspiring people are doing great things to raise awareness of RA and other inflammatory arthritis diseases.  Very cool.

(May 1, 2012) – Show Us Your Hands! is pleased to announce the release of its 1,000 Hands Poster Project, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This poster proudly displays the first one thousand hands which were submitted to the community collage project and is being released today in celebration of Arthritis Awareness Month.
May is National Arthritis Awareness Month in the United States. Its goal is to bring attention to the issues and realities faced by people who live with one of the more than 100 different types of arthritis. More than 46 million people live with arthritis in the US, including 300,000 children. It is the most common cause of disability.
The 1,000 Hands Poster is available for purchase at Zazzle. “This poster is powerful! It represents how individual we each are with inflammatory disease while also showing how strong we are together as a community,” says founding director Cathy Kramer. All funds raised from the sale of these posters go to Show Us Your Hands! An international awareness movement which serves to unite and inspire the inflammatory arthritis community.
The Show Us Your Hands! inflammatory arthritis community collage project debuted in December 2011. People of all ages from around the world are represented in this community project and new photos continue to be added to on a regular basis. The community collage project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands. By April 2011, the Show Us Your Hands! inflammatory arthritis community collage project had grown to include more than 1,000 hands.
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease, and Systemic Lupus Erythematosus.
Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter
(May 7, 2012) – Show Us Your Hands! is pleased to announce the release of its Our Hands Can! photo book, the latest in a series of successful initiatives aimed at uniting the community of individuals who are living with inflammatory arthritis and increasing the public’s awareness of this group of autoimmune diseases. This photo book contains the inspiring photographs and moving stories of dozens of people of all ages from around the world who live with different types of inflammatory arthritis and is being released today in celebration of Arthritis Awareness Month.

May is National Arthritis Awareness Month in the United States. Its goal is to bring attention to the issues and realities faced by people who live with one of the more than 100 different types of arthritis. More than 46 million people live with arthritis in the US, including 300,000 children. It is the most common cause of disability.

The Our Hands Can! photo book is available for purchase at Blurb in both hardcover format and softcover format. “Being part of this has made me feel proud of who I am with rheumatoid arthritis and all for the first time in a long time,” says Samantha Legere, who is profiled in the photo book. Founding director Lene Andersen adds, “Our Hands Can! is a tangible affirmation that all of us who live with inflammatory arthritis find a way to live meaningful, productive and joyful lives. Our hands may hurt and bear the visible signs of our disease, but it doesn’t stop us!” All funds raised from the sale of these photo books go to Show Us Your Hands!, an international awareness movement which serves to unite and inspire the inflammatory arthritis community.

The Show Us Your Hands! inflammatory arthritis community collage project debuted in December 2011. People of all ages from around the world are represented in this community project and new photos continue to be added to on a regular basis. The community collage project serves not only as a symbol of the wonderfully supportive inflammatory arthritis community that continues to grow and connect online, but also acts as a reminder that people who live with these diseases should be proud of, and not ashamed of, their inflammatory arthritis hands. By April 2011, the Show Us Your Hands! inflammatory arthritis community collage project had grown to include more than 1,000 hands.
Autoimmune diseases occur when a body’s immune system mistakenly attacks healthy tissue. In the case of inflammatory arthritis, a person’s joints are frequently attacked, resulting in chronic pain and debilitating inflammation. The most common inflammatory arthritis diseases are Ankylosing Spondylitis, Juvenile Idiopathic Arthritis, Mixed Connective Tissue Disease, Psoriatic Arthritis, Reactive Arthritis, Rheumatoid Arthritis, Scleroderma, Sjogren’s Syndrome, Still’s Disease and Systemic Lupus Erythematosus.

Show Us Your Hands! is an international awareness movement which serves to unite and inspire the inflammatory arthritis community. For more information, please visit www.showusyourhands.org. Show Us Your Hands! can also be found on Facebook and Twitter.
 

Thursday, May 3, 2012

Be Straight With Your Doctor

An excerpt from a recent post at HealthCentral:

Earlier this month, I wrote about the stress and anxiety I have been experiencing lately.  It's hard to believe that it was almost three weeks ago I wrote that post.  I blinked and here we are at the end of April.

Before my appointment with the nurse practitioner at the neurology clinic, I filled out the symptom checklist (found on page 3 of the returning MS patient forms).  The checklist is very helpful.  Along the left side of the page are symptoms such as loss of vision, vertigo, weakness (arms/hands - left/right), trouble walking/falling, memory loss/cognitive problems, bowel problems, etc.  For each symptom, you are asked to indicate on a scale of 0 to 5 the severity of each symptom (0=absent, 1=mild, 3=moderate, 5=severe).

For the symptom “depression/anxiety,” I went for the maximum and indicated a “5.”  When my nurse came into the room and quickly glanced at the checklist, she was able to zero in on my current, most disabling symptom.  No beating around the bush.  We got down to business and talked about the state of my mental health.
Read this post in its entirety:

Anxiety and Multiple Sclerosis: Seek Help!

Tuesday, May 1, 2012

Anxiety vs. Depression as Experienced by Arthritis Patients

A new study published in Arthritis Care & Research suggests that one third of US adults living with doctor-diagnosed arthritis (including rheumatoid arthritis, gout, lupus, fibromyalgia, or some other form of arthritis) aged 45 or older report having anxiety, depression, or both.  The study comprised a phone survey of 1,793 individuals living with arthritis from the Arthritis Condition and Health Effects Survey (ACHES) which is the most comprehensive population-based national survey of US adults with arthritis to date.

Eighteen percent of respondents reported having depression, a common comorbidity in patients living with chronic illnesses including rheumatoid arthritis (Murphy, 2012). In previous studies involving RA patients, nearly 20% of patients experienced depression (Söderlin, 2000).  Whether we’re talking about arthritis, rheumatoid arthritis or rheumatic diseases, it seems that rates of depression have remained similar over time.

In the current study, almost twice as many people living with arthritis experienced anxiety (30.5%) as compared to depression (17.5%).  Eighty-four percent of respondents with depression also reported anxiety.  Thus a significant portion of patients (14.7%) living with arthritis experience both depression and anxiety.

Have you ever experienced depression or anxiety, or both, and do you live with a rheumatic disease?
Read this post in its entirety:

Anxiety is More Common in Arthritis Patients Than Depression