Everything's Fine by Sid Schwab

For an eloquent commentary on our current political atmosphere in America, please read Everything's Fine over at Surgeonsblog. Sid Schwab doesn't hold back in expressing his frustration. Do go read.

Music Antics

This just makes me laugh!!!

As a former marching band person myself, I currently don't require a pause in music to stumble a bit. MS takes care of that for me. Once, I walked off the edge of a curb, right on top of the air, and found myself lying flat on my front - arms outstretched. But I'm sure that I looked as graceful as swan doing it, especially since I didn't even spill my doggie-bag in the process. Hehe.

Random Thoughts - How a few simple words can break down walls

This post was started over a month ago but I never finished it. I share it here with you today because my heart goes out to those...

• who struggle alone in life
• who desire support, love, and understanding
• who bust their butt surviving and succeeding
• who need human contact in an inhumane world
• who deserve respect and understanding, regardless
• who expect boundaries to be observed and protected
• who wish for decency and honesty in the world
• who stand up for injustices and stand out against ignorance
• who are private
• who can be hurt
• who can be angry as hell
• who are sad
• and most importantly, who need to know that somebody CARES.

So last month, wanting to connect with others and withdraw into myself (at the same time), I experienced a conflict of desires.

On Monday, February 11, 2008, I just couldn't envision sitting with children (music students), the majority of whom would not have been astonishingly prepared for their lessons. So I indulged myself and cancelled my afternoon students to be able to spend a few precious hours to myself, the first opportunity to be alone since Joshua had died (my 19-year old cat.)
It was difficult to call each family to announce "no lessons today" - but for those who know me well inquired as to if I were feeling well. Only one mother asked in such a way that I "spilled the beans" to her and told her about my 19-year old cat who had just passed away.

But something very touching happened. Near the time which this child would have had her lesson early that evening, my doorbell sounded. I answered it to find my student carrying a bouquet of flowers and a sympathy card. She told me that she was very sorry for my cat. We looked at each other. I thanked her. Then gave her a big hug. In the card and on the envelope, this 9-year old girl had drawn numerous hearts around her picturesque portrayal of me and my cat.

Surrounded by love was the message she gave.

***********

Later that evening, I did attempt to teach a couple of high school students. It's kinda odd though as one of my students turned the tables on me.

There are a variety of questions I almost ALWAYS ask each student at the beginning of each lesson, such as "how was your week?" or "anything new going on?" or "how did that practice technique work out?"

Basically, acknowledging that...

• I understand you are more than just my music student.
• I truly care about what is going on with you.
• You are a person with a life outside these walls and what goes on out there affects what goes on in here.
• WE are a on-going group project and must work together to reach common goals.
• and I expect you to fully participate.

So my piano student asks me, "how was your week?"

I couldn't really answer, or rather didn't want to answer, the question. So I simply shrugged. Now those who know me know that my face hides nothing. There may be instances where I'm better able to conceal disappointment, but for shear raw emotion, nothing is hidden. My student just looked back...paused...and opened her music to begin working. This was quite a divergence since she is an extremely talkative gal.

That question hung in my ears and the answer crawled at my throat. As we began the task of creating music, the tears pushed hotly against my eyelids. It became increasingly difficult to place my attention on the task at hand. Remember, lessons are a group project and without MY participation, there is no group.

But El. respected my boundary of silence.

No assumptions, no guesses, no further questions. What I did not offer, she did not seek to take from me. Examine the situation at face value, consider the known quantities, do not force information into inappropriate places, and be willing to acknowledge that one tiny piece of information may change the entire picture and go from there.

These are things which I seek to 'give' to my students.

• A sense of honesty and integrity
• A respect of personal boundaries
• A willingness to share of ourselves
• An openness to seeking solutions and collaborating on problems
• and a joy of creating music.

So finally, after about 20 minutes, I conceded that I was incapable of reaching beyond my self and connecting with my student. The essence of collaboration was missing. She was open, but I was not.

Did this make me a failure? No, it simply confirmed that I am human.

So what does all of this have to do with multiple sclerosis or life in general?

It serves as a reminder to make no assumptions, respect boundaries, and acknowledge that there are REAL PEOPLE on the other end of that keyboard with REAL LIFE EXPERIENCES. You may not know what they are, but understand that each person accumulates a variety of experiences from birth which serve to shape that person's life in vast unknown ways.

Be kind. Be respectful. Be honest. Be courageous. Be strong.

Know that YOU are surrounded by hearts as only a 9-year old can express.

Carnival of MS Bloggers #6 - A Country of Our Own

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

Diane of A Stellarlife bravely welcomes us to

"A Country Called Multiple Sclerosis"

One day in 1990 I suddenly moved to another country. Not knowing the spoken language, not familiar with the foods of choice, and knowing no one else who had ever been to this place; well, I was on my own. The country was called Multiple Sclerosis.

Knowing I was headed there or the island of a brain tumor, I was quite happy to have an MRI expose me to my new path. Winding through symptoms including numbness, foot drop, legal blindness, slurred speech, fingers to feet that stopped functioning, I settled, after 18 years into my current life with twists and turns more dramatic than any roller coaster, comfortably aboard a lift-chair with a 5 MPH power chair poised next to it. I was a long way from Indiana.

First I had to learn the language. MRI, ABC and sometimes RTN, NIH, CNS, RR, PT, OT, AFO, oh dear, hard to learn a new language as an adult, especially when the natives often speak in acronyms.

The cuisine took some getting used to as well: green tea, low fat, lots of fruits and vegetables, high fiber, water galore. Out were my trips to burger land, fried chicken and frozen TV dinners. Oh, and for dessert: stretching with yoga and a thick topping of meditation.

The political system is not that unusual. Doctors, Researchers, Therapists, Pharmacists, all adding their individual ideas for a better MS. We do not vote, but we visit them and choose which ones will represent our needs the best. Sometimes they exceed our expectations; sometimes they drift off point, leaving us adrift as well. Fundraising is ongoing and there never is enough money to deliver what we all want---a cure.

We need not feel alone though, for there are societies, associations, and many groups that offer power in numbers. Thank goodness the Internet thrives in this country and offers engines to take us to many helpful sites. And since any minuscule point on any tiny nerve from the top of our heads to the tips of our toes can be compromised at each moment in time, well, no two bodies ever experience exactly the same physical mishaps; nor, for the same length of time. No wonder the first pilgrims to this country were considered insane.

I guess the most difficult obstacle I had to learn to deal with was the uncertainly of life here. Oh, sure, in Indiana we had 10’ below and snow that stayed for months. Spring would bring tornadoes and the summer brought humidity with 90’ temps that were unbearable. “Just wait and the weather will change,” they used to say; actually that was said in my second home-Seattle, Washington as well. And the same attitude is true with MS. Unpredictable: the concept that defines MS and dismantles the goal-oriented planner like me.

Do not bother looking for a visitor’s bureau; none exists, probably due to having to update brochures so often. (The cause is this; no it’s not. Don’t eat dairy; dairy is fine. It is not inherited; yes it is. This drug is best; no this one is better.) Besides, who would want to visit here? Better to lose your money in Vegas than lose your mind here. Our brains are shrinking, atrophy of limbs sneaks up on us. No beaches for sunbathing or saunas for visitors, the heat will slow our nerve signals to a virtual stop.

Will I fall today or trip over my unresponsive foot? How much will be seen clearly today and will I have the strength to look around? Numbness, tingling, pain and spasticity are always nearby. Weakness, depression, constant worries about the “f” word lurk around every boarded up tourist attraction.

F for future, the fear one dare not say aloud. Jobs are so difficult to keep here. Money is always a concern and no insurance will cover our “pre-existing condition.”

So I decided to embrace my new country, “go with the flow,” “chill out,” “take it one day at a time.” After all, this is my home now. Each day is a new adventure, a new word to learn, a new fellow citizen to meet, a new mountain to climb. Yes, MS is my new home. I embrace the new person I have become and I wouldn’t live anywhere else. Headed this way? Be brave, it is a great adventure.

Next up, meet some of the fabulous residents of MS Country.

Jenn shares some good news, "in the 10 months since my last MRI, there are NO new lesions!!!"

We need to find out what causes this thing, and though we have figured out how to slow the progression, our medical best is still a failure. The disease will still progress. We've come a long way baby, and I am grateful, but we have some exciting challenges still ahead. MS does not discriminate. You can be a young healthy fine woman one day as I was, and the next day my vision was severely decreased thanks to Optic Neuritis, and my world was shaken. I am glad to say that I do not identify myself with MS, IT is not ME. I don't hate it or put any negative energy (that is draining!) toward it. I am just loving my body, and the gift of life, and the nature around me that God has blessed us and revealed Himself to us through. I would LOVE to think that I may be healed, yet I realize for most that does not happen.

The many gifts of life don't always come with just one blessing or one challenge at a time. Often it's a mixed bag. Vicki takes time to relay the major life events of her past year - through a new relationship, strange symptoms, THE diagnosis, relapses, love, an engagement, and a literal moving of house and home.

"A year that has been so hard yet also so wonderfully good!"

It all started in January 2007, the 6th to be precise, when I met B for the first time in person for lunch in a pub. I talked the whole time and I think he only spoke to ask me what I wanted to drink!

So things went from there, we met for dinner and then again for lunch and we carried on. At the end of January I got a strange feeling in my right hand, my little finger and finger next to it were feeling slightly numb. I put this down to having driven a strange vehicle the weekend before. After that the numbness moved to my feet and lower legs and gradually moved on up. To begin with it wasn’t bad. I could feel almost normally, then one morning after a hard couple of shifts I woke up with much less feeling all the way from my feet to my bum and poor balance.

I thought back to two periods of numbness to the left side of my torso which included an episode of a very strange sensation down my spine. I had decided that week that I was not safe doing my job as an ambulance technician and therefore made a Drs appointment. I was thinking referral to an osteopath/ chiropractor for my back but no referral to a neurologist.

Throughout all of this B was there for me. I gave him the opportunity to get out of the relationship on the day I was diagnosed but he said no. He had told me he loved me the month or so before; I had said it back some time after. Having never said I love you to a boyfriend before it was a bit of a scary and unknown quantity! His view was that you never know what is ahead and lets just get on with things!

B and I got engaged on the 5th January 2008 and we are in the process of moving house. He doesn’t seem at all phased by any of what has happened over the last year or so and says he loves me more and more.

So as I said at the beginning of this post, it’s been a horrible year it really has but I wouldn’t go back. I’ll take B and the MS rather than not having either. May sound strange but that’s how I feel!

And do take the time to read the comments which have been left for Vicki. You will find that love often eclipses the uncertainties of life with multiple sclerosis in this new country of ours.

"Anyone who has never made a mistake has never tried anything new." - Albert Einstein

Right on. This is what I've been trying to get across to my son Adrian. He's 9 and learning to read, write, spell and process life with dyslexia. He wants so badly to be perfect, but he can't. So I've been talking to him about how it's ok to not get things right all the time. And it's ok to feel bad about it. The crappy feelings will go away. Keep practicing. As my friend Paul's wife Laura says "Practice makes pretty good!"

Read Trrish's inspiring post at These Pretzels are Making Me Thirsty.

Sharing some great MS moments, newly-diagnosed Kim of Sunshine and Moonlight is reminded that having M.S. can have its benefits. In It's a Good Thing I Have M.S.!, she writes of her comical weekend snow-bound in Northwestern Pennsylvania.

Having avoided the bathtub at all costs since her diagnosis, Kim tells of making nice with her tub in My Bathtub Didn't Eat Me! and introduces what might be the new national anthem for M.S. patients.

And in the true spirit of comedian Bill Engvall, the land of Sunshine and Moonlight explores Here's Your Sign moments for M.S. patients.

Spying the victim of the dreaded Multiple Sclerosis Back Scars on Days of our Lives, the Queen of Mediocretia* of Suburbia says She Looks Great!

Back in '94, five days after my elective insurance started (victorious smug snort of self-satisfaction) I woke up and my feet were asleep. Oh, and I felt like my guts were super-glued together.

"Like a tight band is around your torso?" asked the neurologist I saw seven days after the insurance started.

"Why, yes, it feels just like that!" (Torso band. Classic. Textbook. So unimaginative.)

This all happened in less than a week. I went on a cruise, returned to an MRI and I was back on the medical Fast Track. The secret to the fast track? Have something so obvious even the receptionist can diagnose it.

"Hmm," grunted the neurologist, "I think you might have a mild case of MS."

"Hunh." I grunted in return, as these thoughts went through my head, in this order.

Curious to know what The Queen thought? What exactly are multiple sclerosis back scars? Who has them? And should you ask your neurologist about them?

For these and others answers to the mysteries of our new land, turn to In Which We Mock Our Illness, brought to you by Ellen, The Queen herself.

And finally, a mystery of a different nature...
"Nervonic Acid...Where Did It Go?"

I love a mystery. Don't you?
It brings out my inner Nancy Drew. I feel way more skilled than her though with my statistical knowledge (I teach statistics). So I'm more like a well designed character in a classic Agatha Christie novel....a curious statistician if you like ;)
So, the mystery that unfolded to me in the last year was one that erupted when I discovered the possible death of nervonic acid from a) our food chain and b) our food information chain.

Rather than revealing clues to the mystery as presented by Orla of Great Mastications, I recommend you read her inquiries into the significance of nervonic acid, a monounsaturated omega-9 fatty acid with a molecular structure of C24H46O2 which contains a C=C double bond in the w-9 position.

This concludes the brief tour of our new land, "A Country Called Multiple Sclerosis." Tune in next time...

But WAIT...that's not ALL!!!

We've also got some of our very own grass-roots media forces.

Stuart Schlossman of "Stu’s Views and MS Related News" msviewsandrelatednews publishes an e-Newsletter which is estimated to reach approximately 4000 people per week.

"With time on my hands, I wanted to provide Multiple Sclerosis information to and for, anybody seeking to be empowered with MS information. Remember please that Knowledge is Power and I want all whose lives are touched by MS, to have this Empowerment."

And Charles A. Rovira who is the one and only podcaster - that's like internet radio on demand for those who are unfamiliar - to focus on multiple sclerosis, MSers and creating a positive community of togetherness.

"I have a few hundred shows under my belt. You can pick up the last 100 shows on iTunes and play it on an iPod or other MP3 player. They are also available at MSB Podshow or there is even a player on the page itself at MSBPodcast.com."

Please do go check these guys out.

The next Carnival of MS Bloggers will be hosted here on March 27, 2008. 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, March 25, 2008.

Thank you.
Comments for this post.

Warning: Steroid-induced Annoyance Ahead

In January, I learned that Montel Williams is honoring Billy Tauzin at this year's The Montel Williams MS Foundation Gala & Pro Celebrity Poker Challenge. It is no secret that Montel has a very chummy relationship with Big Pharma and PhRMA (Pharmaceutical Research and Manufacturers of America) more specifically, of which Tauzin is the CEO.

This being MS Awareness Week and all, it seems like an appropriate time for Montel to hold his little soiree. But I gotta tell ya, this little tidbit of information just made me want to puke (or maybe that's the heartburn from day 5 of Solumedrol.) Tomorrow, you too can 'join in the fun' by signing up for the online Pay-Per-View event, just $9.95. Here's the Press Release regarding the live-streaming event and information regarding a Podcast interview with Montel himself.

So, please while the star-gazing, poker-frenzy folks out there in cyberspace pretend to pony-up to the table and hob-nob with the Big Pharma guys, I can only hope that my thighs continue to remember why they exist, my fingers continue to respond to the big great mind I've got in my little ol' head, the elephant continues to retreat from standing on my face, the growing tinglies ALL OVER which are revealing unknown numbnesses continue to go through their stages, my balance stops leaning to the right, and I survive another day without chewing off somebody's head or eating cardboard right out of the box.

Needless to say, I won't be watching the Poker Game.

Is Diet the Answer to Treating MS Symptoms?

Remember how March is National MS Education and Awareness Month?

Well The New York Times has jumped onboard with a short series of articles written about multiple sclerosis by their very own "personal health columnist and science news reporter." Ms. Jane E. Brody writes weekly articles for NYT and is considered a leading authority on 'health & nutrition' and 'health & fitness' on the speaking circuit.

Last week I discussed Ms. Brody's first article discussing multiple sclerosis. This week, I'll discuss her latest article with bold emphasis mine. Excerpts from other websites are presented in italics.


"Some With MS Put Their Hopes in a Diet"
By JANE E. BRODY
Published: March 11, 2008

What you are about to read is not an endorsement of any particular diet as a therapy for multiple sclerosis. Nor is it a suggestion to forgo established medical treatments.

not an endorsement...but definitely a plug for one particular book which was released in September 2007

But so long as it is part of a medically approved treatment program, the diet described here is unlikely to hurt, except perhaps to make meal planning a challenge. And on the testimony of those who have followed it, the plan may be worth trying, despite the lack of scientific evidence to support it.
The diet has not been subjected to a placebo-controlled, randomized clinical trial, the gold standard for determining the value of any therapy. But Ann D. Sawyer and Judith E. Bachrach, co-authors of “The MS Recovery Diet,” say this should not dissuade people struggling with the debilitating symptoms of the degenerative disease.


The diet they outline extends one developed decades ago by Dr. Roy L. Swank, an emeritus professor of neurology at Oregon Health Science University. It severely restricts saturated fat and increases essential fatty acids like fish and vegetable oils, measures endorsed by the National Multiple Sclerosis Society as part of a healthy diet.

Nutrition and Diet - National Multiple Sclerosis Society

Maintenance of general good health is very important for persons with MS or any chronic disorder. A well-balanced and carefully planned diet will help to achieve this goal. MS specialists recommend that people with MS adhere to the same low-fat, high fiber diet that is recommended for the general population.

The Problem with Special Diets

While many different diets have been proposed as a treatment, or even a cure, for the signs and symptoms of MS, evidence of effectiveness is very limited. There is some evidence that a diet low in saturated fats and supplemented by Omega 3 (from fatty fishes, cod-liver oil, or flaxseed oil) and Omega 6 (fatty acids from sunflower or safflower seed oil and possibly evening primrose oil) may have some benefit for people with MS.Most of the diets that have been touted as helping people with MS have not been subjected to rigorous, controlled studies, and the few that have been evaluated have produced mixed results. Most of the claims made for dietary treatments are based on personal accounts, and the reported benefits may have been spontaneous changes that would have happened without any treatment.

In 2003, Dr. Swank reported that among 144 patients placed on his diet 34 years earlier, two-thirds of the 70 who carefully followed it survived, compared with one-fifth of the 74 who were “poor dieters.”

Translation:

~33% patients carefully followed the diet and survived
~10% patients were 'poor dieters' and didn't survive?
~57% patients neither survived nor didn't survive?

Huh??

Dr. Allen C. Bowling, a neurologist and nutrition expert at the Rocky Mountain MS Center in Colorado, wrote that “no well-designed clinical trial has been conducted to determine whether decreasing dietary sources of saturated fat improves outcomes in MS.”

“The whole area of diet has been a loose thread in MS studies — the evidence is tantalizing but not definitive,” he said. “Making reasonable changes in diet is not going to hurt, but at the same time it’s important for people with MS to take advantage of what conventional medicine has to offer and optimize their treatment options every single day.”

Same source and similar quotes to last week's article.

Besides saturated fat, Ms. Sawyer and Ms. Bachrach suggest that other potential dietary culprits include dairy, grains with gluten, legumes, eggs and yeast. “Beyond the five usual suspects, each person may have very individual food sensitivities to herbs, spices or food in any category,” they write. Each patient would have to determine personal sensitivities through trial and error.

In an interview, Ms. Sawyer said: “This approach is simple, it doesn’t cost anything and nobody is making money from it. We’re not saying the diet is a cure; it’s a way to control the symptoms of MS. Walking around watching what you eat is a lot better than sitting in a wheelchair.”

But if there is a product (book) for sale, then somebody is be making money, but I have to disagree with Ann and Judi's "image of Multiple Sclerosis" which "is burned into all of our minds." Sounds like fear-mongering to me.

The image of Multiple Sclerosis is burned into all of our minds: a young adult in a wheelchair, facing an unrelenting loss of physical and mental functions. This does not have to happen!

Welcome to the MS world of Ann Sawyer and Judi Bachrach, where healing and optimism prevail and life can be lived to the fullest, unimpeded. Nine years ago, Ann was totally exhausted and her feet so numb that she could barely hobble about. Now, whether ramping up the treadmill or dancing at a wedding, she is full of energy and vitality. Luckily, she found a treatment approach that worked. Judi’s MS had progressed to the point where she had to spend most of her days in bed. A wheelchair was out of the question because her trunk muscles could not support her sitting up. Now, after 39 years of severe compromise, Judi is emerging into a full life once again, regaining her lost abilities and energy.

Before she started the diet, Ms. Bachrach, a former dancer and movement instructor, could not even use a wheelchair because her upper body had become too weak to manipulate it. She was 35 when she learned she had MS; by 49, she was mostly bedridden. Then, in 2006, she met Ms. Sawyer and decided to try the diet she suggested.

“After one week on this diet, I regained feeling in my toes,” she wrote. “After about six weeks, I also gained incrementally in terms of endurance and muscular rebound. I was even able to walk back down to the waterfall on my land, to carry firewood, to empty the ash bucket, to make a spaghetti sauce and to stay up to greet my husband on his late return from a trip, all in one day, and still felt just fine.

“There is no doubt that on this diet, my good days are definitely better. I continue to gain new sensations, mobility, strength and endurance every month.”

Hers is one of nearly a dozen dietary “success stories” recounted in the book. Several other patients reported that they remained well as long as they stuck to the diet, then relapsed when they got careless about food, only to improve once more when they went back on the diet. Why, you may wonder, isn’t everyone with MS on this diet? The answer lies partly in the complex nature of the disease.

Multiple sclerosis is a highly variable autoimmune disorder in which the body’s own immune system attacks the myelin sheaths that protect axons, which transmit nerve signals in the brain. The most common form is called relapsing-remitting: patients are well for a time, then their symptoms return, only to subside again sometime later, with or without treatment. Thus, it is hard to know whether any improvement is due to diet.

Patricia O’Looney, vice president for biomedical research at the Multiple Sclerosis Society, said in an interview: “There’s a strong placebo effect in MS. With any change a person makes — in diet or whatever — they’re likely to feel better because they’re taking some action. Eating less saturated fat and more fish oil is good for all of us. But we’d never suggest changing one’s diet in place of taking” a therapy approved by the Food and Drug Administration.

To clarify, Patricia O'Looney, PhD, works for NMSS

The theory behind the “recovery diet” is that in susceptible people, partly digested proteins stimulate an allergy-like immune response, resulting in antibodies that mistake myelin for the offending protein. These antibodies can then enter the brain and attack the myelin sheath, disrupting nerve conduction and eventually causing death of the axons. The goal the authors suggest is to identify and eliminate culprit foods from the diet to quiet the immune response.

"These antibodies can then enter the brain...eventually causing death of the axons." This doesn't explain re-myelination.

There are several problems involved in trying to test this or any other dietary regimen scientifically. As Rosalind Kalb, an associate vice president of the MS society, explained, the cyclical nature of the disease means that studies must be long term. “Over an extended period people have to follow an exact diet,” she said in an interview, and the findings among them must be compared with people on ordinary diets. Documenting adherence to a strict regimen like the recovery diet is challenging in itself.

To clarify, Rosalind Kalb, PhD, works for NMSS

And since there may be individual sensitivities, there are too many variables, and it is hard to know what to exclude from the test diet. It is one thing to examine a single nutrient like omega-3 fatty acids or vitamin D, but much more difficult to test a diet in which many different nutrients are involved.

“Thus far, no researcher has been interested in taking this on,” Dr. Kalb said. “The medications seemed to show more promise.”

*******************************

If any book should be recommended to someone with multiple sclerosis, it should be Rosalind Kalb's book. I have personally found it very useful and informative.

Multiple Sclerosis: The Questions You Have - The Answers You Need, 4th Edition (2008)
Rosalind C. Kalb, PhD

"The thoroughly revised and updated fourth edition of the classic Multiple Sclerosis: The Questions You Have, The Answers You Need continues to be the definitive guide for everyone concerned with this disease—those who have MS, those who share their lives with someone who has it, and all healthcare professionals involved with its management. It covers a wide range of topics in an accessible question and answer format that allows people to easily find the information they need.

Within each section, MS experts including neurologists, nurses, rehabilitation and mental health professionals, lawyers, and insurance and employment experts, answer the questions they have been asked most frequently over the course of their careers. Each chapter is designed to cover the full spectrum of the disease—from the time of diagnosis through the complex challenges that can arise if the disease progresses."