Monday, May 30, 2011

Passion, Individuality, Perseverance: Byron Janis Discusses Performance and Living with Arthritis

“Music for me was indeed the closest thing to a feeling of God, an unspoken reverie to and from beyond.  To lose music to me was like losing my most intimate contact with Him.  “Believing” was not the issue, but if I could no longer play, what then?” - Byron Janis, Chopin and Beyond: My Extraordinary Life Through Music and the Paranormal (J.Wiley, 2010)
Last week I was fortunate to spend an afternoon with Byron Janis and Maria Cooper Janis while they were visiting Washington, DC.  We sat down and had a good, long chat about arthritis and perseverance which you should read at MyRACentral.

In the 2.5 hours I spent with the Janises, we talked about more than arthritis and Byron’s memoirs, which are included in the new book Chopin and Beyond which was coauthored by Maria Cooper Janis.  We talked about music, performance, and the passion which lies within each of us.

One of the last questions I asked Byron was related to his becoming a musician all his own.  I asked, ‘Having studied with Vladimir Horowitz at such a young age, how long do you think it took for you to solidly establish your own sense of style and uniqueness as a performer?’

Byron: “Very good question.  You know, Horowitz’s heart was in the right place.  He would say, ‘You don’t want to become a second Horowitz.  You want to be a first Janis.’  I’d say, yes, that’s true. But how do you do that?

It’s hard. You have to be strong, or strong-minded, and know that your mind is your mind.  And what helped me too was that I was never in awe of the person.  I played for Toscanini.  I wasn’t in awe of him, I was in awe of his extraordinary talent which was unbelievable.  So that helped me.

I grew up around Heifetz, Horowitz, and Toscanini.  I think that’s pretty good.  I had my own standards which were pretty high because of what I saw and heard.  But it did take me about five years [to become] what I really want and what I felt completely, and managed to discard that which wasn’t me or which was habit.”

I also asked, ‘How much time did you spend listening to other performers or recordings?’

Byron: “Well, not a lot.  Because again, Horowitz said something which was very good. ‘Why do people listen to recordings?  If you are going to listen to a recording, listen to TEN recordings of the same piece.  You will see that they are all different and yours has to be different.’  But yours has to be NOT different, as some try to be original [ed: or contrived] which is too bad.  But the hardest thing in the world is to be natural.

It’s the hardest thing in the world to play naturally.  You have something to say, which is your own.  And I always was frightened that Horowitz was, well he could be very mannered and whatever on stage.  I was always frightened that being natural was boring, you see.  Not at all, not when you have a talent.  If you are natural.”

When discussing teaching, Byron pointed out that “we can’t teach expression.  Sure we can teach fundamentals and technique, but we can’t teach someone how to feel.”  The following excerpt comes from an article, In Praise of Infidelity, which Byron Janis wrote for the Wall Street Journal in 2010.  I find the description of the creative process to be enlightening.
Thinking is creativity’s worst enemy.  When I sight-read a score, everything seems so right, so natural.  The notes seem to be playing themselves and the music flows.  Why?  Because I am not thinking.  Inspiration has been my guide—the adventure of the first time.  Then comes familiarization, the learning process where, until the piece is well in hand, thinking is allowed.  After that, interpretation—choices must be made, but you are finally free to feel and use your creative instincts.  And, at last, creation—how do I make the music sound as it did when I didn’t know it?  The great poet Yeats spoke of this dilemma so beautifully in his poem “Adam’s Curse”:
    Yet if it does not seem a moment’s thought,
    Our stitching and unstitching has been naught.
Before the heart can remember, the mind must forget.  And, when I least expect to, I will suddenly start playing that piece, again without thinking, as I did in the beginning when I first sight-read it.  That is when it happens—I have finally discovered my “moment’s thought.”
(Back to Thursday’s chat.)

Byron: “In talking to children, I talk to them as I would talk to an adult.  I think they perfectly understand, and they do.  Don’t they?  I mean they understand terribly well things that I was telling them.  They understood it very well.  I think they appreciate the fact that you talk to them as anybody else and not talk down to them.

And the other thing I always say is this.  Anybody who loses the child in him has a less interesting, pitiful life.  Because all the great artists I’ve known - I’ve known Picasso, painters, all kinds of people - they are children.  They grow up, mature, whatever.  But the child remains.”

Keeping the child inside of us alive is vital to living a victorious life.  Not something which I’ve thought too much about previously, but will from now on.

Janis had just came from Pittsburgh where he spoke to a group of children living with severe physical or learning disabilities at the children’s hospital.  He told the children, “There is a job for each one of us, no matter what our condition, just something we can do, that nobody else will do, as we do it.  I keep telling them, almost nothing is impossible.  You’re going to find something that you love and that you will be able to do.”

In a related story Byron continues: “Something that Chopin said, which was really fascinating and wonderful not only for pianists but for life.  ‘Don’t try to make your fingers equal in strength  Each one has it’s own job to do.’  And that’s so true. We’re not equal, really.  I wish we would all realize it.”

“What’s important, certainly with artists, is to keep our vulnerability.  Sure, you are going to get hurt.  In life, in love, in this and that.  But that’s life.  Sometimes I think we’re put here to learn how to handle adversity.  So many people, we all, have adversity.  How we handle it is key to what our life will be.  I really think that.  I learned how to handle adversity.  Moments were very difficult, I’ll repeat.  And I almost succumbed, but I didn’t.”
“It had not been the applause that kept me going, nor had it been the press when it was glowing.  It was my passion, my ability to never stop persevering, and the feeling of creating beauty that was necessary for my soul to exist.” - Byron Janis, Chopin and Beyond: My Extraordinary Life Through Music and the Paranormal (J. Wiley, 2010)
More information regarding Byron’s autobiography, the PBS documentary The Byron Janis Story, articles and public appearances is available at www.byronjanis.com.


Postscript: Any discussion of the paranormal seems to invoke strong reactions from those who believe and those who are skeptical.  I had fabulous discussions of what the term "paranormal" means to Byron and Maria Janis.

It's not just about bending spoons.  It's about the vast majority of the  universe which Einstein said we do not yet know nor understand.  It's about the power of the mind to overcome adversity.  It's about the unknown and discoveries yet to be made.  It's about science and research to find cures.  It's about synchronicity.  Honestly, the discussion we had could fill up an entire other interview.

Saturday, May 28, 2011

Mixed Emotions Surround an MS Diagnosis

In looking back at the various emotions I felt during the events surrounding my MS diagnosis, I was mildly surprised at what surfaced within my memory.

clueless-ness, terror, relief, anxiety, hope, dispair, acceptance

Read this post in its entirety:
Emotions Before, During, and After a Diagnosis of Multiple Sclerosis

Thursday, May 26, 2011

Missing Supper

Very unusual when a cat misses a meal. In fact, food is typically the first thing on a kitty cat's mind as soon as the sun comes up. Shortly after that thought occurs, the same kitty cat likes to walk all over his kitty mama.

Pippin likes to take the tap-tap-tap and stomp-stomp-stomp approach to waking up a beloved human.  If that doesn't work, he moves onto making noises with the piles of plastic bags and/or paper on the floor next to my bed.  He knows that he has to be loud to wake me up.

I joke that if Pippin's attempt doesn't work, he sends in the heavy hitter (ie. his sister, Musette).  She takes the walk-walk, meow-meow, jump-from-the-nightstand-onto-mommy's-chest and repeat approach.  Admittedly the pouncing is rather effective.

Pippin
As you may recall, I teach music lessons from my home studio.  On teaching days, I take a supper break during which my three cats are fed their dinner which is typically one can of food split three ways.  Monday evening, Pippin didn't show up for supper.  I thought that was very odd, but figured that may he had eaten a good snack in the afternoon (a little bit of dry food) and was sound asleep.  I tried calling for him but he didn't come.  Very soon, I needed to go back to teaching and I put Pippin's dinner in the refrigerator so that his brother and sister would not help themselves.

After I was done teaching, I still didn't see Pippin.  I called and called.  I looked in all the typical hiding places.  I call Rob to ask if there are any additional 'secret' hiding places that I hadn't discovered yet.  I take the flashlight and look under all the beds in the house.  I look in the corners of the closets.  I look behind the furniture.  I ask Rob, "are you absolutely sure that Pippin didn't slip out this morning?"

To be honest, I was starting to panic.  I even went outside with a container of dry cat food to shake as accompaniment to my calls.  Instead of discovering Pippin, I did discover a rabbit in the front yard. This little guy stayed around for quite some time.


OK, I'm starting to panic.  Where in the world was Pippin?  Keep in mind that I really didn't think that Pippin was outside as he gets scared if you even carry him too close to the front door, much less try to get outside.  I go back downstairs, with the flashlight this time.  I look in the laundry room.  I look under the stairs behind the containers of Christmas decorations.  I am basically at a loss and not very happy at the moment.

Then as I'm walking through the 'playroom' in the studio, I catch the glint of two copper eyes between a small opening in a sliding louvre door which leads to my small file room and the electrical panel to the house.  I had closed that door early in the day, but not quite all the way, leaving about a 3-inch gap.

Apparently Pippin was in the dark room when I pulled the door closed.  Lifted and slid it sideways, really, as the top rail has come loose from the door frame.  This is one reason why I hadn't tried hard enough to get it all the way closed.

Why didn't Pippin answer my calls as I tried to rouse him for dinner and then was frantically looking for him?  Well, because Pippin doesn't have a very loud voice at all.  In fact, he has the softest, highest pitched meow that I've ever heard.  You would laugh if you heard it.  Also, his "purr" makes no noise.  Something about Pippin's voice box is not quite normal for a cat.  He probably was trying to call me and I didn't hear him.

The poor guy not only didn't get a 'snack' during the middle of the day, he missed supper.  He was shut up in a dark closet where even he probably couldn't see his own black paw in front of his face if he weren't sitting in the slender opening of the door.  Why he didn't scratch at the door as I walked past, I'm not sure.

This little guy still has no idea that he can't be seen under many different circumstances.  He is very trusting of his tall human companions who sometimes walk through dark hallways in the middle of the night.  I've walked into him once before and we both yelped. 

Next time I'm in the file closet and go to close the door, I must remember to look in the dark corners for Pippin.  But at least now, I know another of his 'secret' hiding places and Pippin is unlikely to miss any more meals any time soon.

Wednesday, May 25, 2011

Importance of Balance between Strength and Flexibility

Last week I attended a presentation at which my physical therapist discussed the importance of maintaining balance between muscle groups.

It was a great reminder of how to begin wisely in any PT program, starting with creating balance between muscle groups.  Imbalance can be caused by many things, including spasticity and disuse which are common in multiple sclerosis.  It makes sense that stronger muscles which get used more may be the ones which become shortened and stiff.  One must be methodical in his/her approach to stretch and strengthen muscle pairs (eg. calves/shins, thighs/hamstrings, abducters/adducters, biceps/triceps, pectoral and back muscles, etc).  I needed this reminder.

I also needed the reminder that in physical therapy, it is important to focus on flexibility, strength training, and aerobic exercise.  To achieve cardiovascular benefits, it is recommended that you exercise 3-5 times per week.  To attain muscular fitness benefits, it is recommended that you train two days per week.

Regarding motivation….“Only one-third of those who begin an exercise program are still exercising by the end of the first year.”  Here are some tips to help you stay motivated if you are working on your own to improve strength and flexibility:
  • Start an Exercise Log or Journal to chart your progress and provide motivation.
  • Find a fitness partner.
  • Schedule your workouts.
  • Make exercise non-negotiable.
What do you recommend to stay motivated when your physical well-being is at stake?


Read this post in its entirety:
Staying Motivated Beyond Physical Therapy

Tuesday, May 24, 2011

World MS Day, May 25, 2011 - Keeping MS Patients at Work


Multiple Sclerosis is a neurological disease that affects people differently. Many people with MS are able to work for years after diagnosis. But many have to give up work, when greater understanding of the disease would enable them to stay.

Read more: Work and Multiple Sclerosis: A Guide for Employers and Employees (pdf)

Accessibility at the workplace and Flexible working hours



Maximizing efficiency and minimizing physical challenges


Taking breaks at work, no janitor's closets please



More materials and resources are available on MSIF's World MS Day website, including Making Change Happen: An MSIF Guide to Advocacy (pdf).


Help Spread Awareness tomorrow for World MS Day 2011.   Go to worldmsday.org for more information and to Sign the Petition to encourage employers and policy makers to remove the obstacles preventing people with MS from getting, or staying in work.

Monday, May 23, 2011

Please Welcome New MS Blogs and Bloggers

General Static - Daphne

Dancing with Multiple Sclerosis - Taylor

You Aren't a Mess, You Just have MS - Katie

M.S. Inspirations - group blog

Gilenya and Me - TickledPink
(you may remember TickledPink as blogging at Fingolimod and Me)

Gracie's Mum - A Story of a Mum with MS - Angela

mylifeonMarS - Ricardo

The Greek from Detroit

Of All the Nerve - Lorna
A Life Despite Multiple Sclerosis
(Lorna's blog isn't new, but at some point she moved it.  This is it's new home.)

If you have a blog which you would like included, please send me a quick email.

Saturday, May 21, 2011

Carnival of MS Bloggers #88

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

laughter, motion, and self-advocacy

from Kaleidoscope Muff
 
I believe that once you’re diagnosed with MS, you land on every MS-connected mailing list. I constantly receive notices about lectures, advertisements about medicines, and magazines. Last week, the edition of MS Focus arrived, and it gave me a few smiles. That was the purpose, actually, since all the articles concerned laughter and its value in sickness. I’m usually a hard sell, but I bought into this theory, and I read nearly all of the articles. There were a few bloggers in there as well, and I really enjoyed reading an MS-related publication.

Then I asked myself, “Self do you really believe that ‘laughter is the best medicine?’” That’s when I realized how long it’s been since I just laughed out loud! Sure I’ll give a little giggle at something funny, or I’ll smile when I feel content (or even to just make others feel happy.) But when was the last time I really had a good laugh? Someone may tell a humorous joke – tee hee. I’ll read something written with a ‘tongue-in-cheek’ attitude – ha ha. There’s a sit com I’m watching – har har. But a really good, non-stop belly laugh? Too long ago…

I can remember, in my past, a lot of times wanting to laugh, and having to stifle it because of my location – usually church, but it’s happened elsewhere, too. I can still visualize that urge rising in me, and bending over to prevent the laugh from escaping. I know the feeling of the tears flooding my eyes because the laugh just wanted a release. Now, I wish I had even those feelings!

I’m not saying I’m not happy – basically I am. I get curmudgeonly over this crappy disease and all the losses I’ve incurred because of it. But my nature, my essence, my inner being is that of a happy soul. I’m just saying that I don’t laugh anymore. I don’t hear/see/feel something hysterically funny and respond by laughing. According to the magazine articles, such laughter can help us physically. So what do I do? Laughter is something you can’t truly fake. It’s either there, or it’s not.

One time, not too long ago, something happened that struck me, and I wanted to laugh. It had been so long since I used those muscles that I got a pain when the laughter began – a stitch in my side – and I stopped at once. Is that it? Do I not laugh because it hurts? I just don’t have the answer.

Am I an oddball? Will the laughter return someday? Is there something wrong with me? Are there others out there, who while feeling somewhat happy, cannot laugh? I need to give this some thought…

Peace,
Muff


The Magic of Motion
from Kate of Dancing with Monsters

Back in the day
(When I walked with difficulty)
I would watch
Others' steps.

Heel-toe,  heel-toe
The ankle flexes.
The foot arches.
The leg swings.

Each pace is magic.
Each motion leaves a trail of
Fairy dust behind...
Scribbles of amazement.

Now I watch people's hands.
Look how the fingers grasp that small object!
Watch as hand and arm turn the page!
Marvel as small muscles move the pen to make letters!

At once I am filled with breathless wonder
And plunged into a sea of sadness.
My feet no longer walk.
My hands no longer write.

I hold my heart open
By celebrating the magic of motion
And forgiving myself for having to forgive
Those perpetrators unconscious of miracles unfolding.


from Matt's Multiple Sclerosis

If there is one thing I have learned so far as a "newly" diagnosed Multiple Sclerosis patient (going on 1 year now) it's that the most devoted doctor an MS patient will probably meet is themselves... That's right... Not all of us are lucky enough to come across a doctor who truly wants to help make us better which is of course my personal case. I can't speak for everyone but I have talked to many other MS patents of all ages who feel like they have to play doctor because their doctor's just can't seem to take care of business.

playing doctor ms multiple sclerosis

We (MS Patients) typically all do our own research on the disease, possible causes, possible remedies, cures, etc. I also find myself researching medications and double checking drug interactions among medications and there has in fact been several incidents where I was prescribed more then one medication at the same time that should not have been mixed... Who figured this out? My Neurologist? Nope. My Doctor? Nu-uh. My Pharmacist? Try Again. ME. That's right, Dr. Matt AKA: Dr. The-Guy-Who-Is-Supposed-To-Be-The-Patient.

When you think about it this really isn't fair... Doctors spend years going to school so they can get that little piece of paper that says "Yup, your a doctor" but then it's like they simply stop learning and keeping up with the medical world and maybe even forget half of what they crammed into their heads before that very important test in college. So now it's up to US, the patients, to double check our doctors work (unpaid might I add) to make sure they aren't killing us....

This brings me to my next point: It's just a piece of paper... All the doctors and neurologist I have dealt with seem to get really offended when you try to show any sign of knowledge relating to the matter at hand... How dare we (MS Patients) go around our all knowing doctors to learn about a disease we will be stuck with for the rest of our lives, how dare we! News Flash: KNOWLEDGE IS FREE, the only thing your paying for at college is the piece of paper you get in the end that says "This person probably should know what he/she is talking about" but like any other class about any other topic you are going to have your students who barely passed, shouldn't have passed, or passed because they cheated. Now those people are giving us drugs and making life changing decisions for us. So please excuse our personal desire to study our particular issues in depth... We may not have a piece of paper to show that we are knowledgeable on the subject, but I guarantee you that a lot of us MS patients know just as much if not more about MS as some of these "half-ass" doctors out there.

Now I better stop here to make something clear... I don't mean to trash talk ALL doctors, I KNOW there are some really great, helpful, doctors out there and that it's only a matter of time before I find one of them but the point I aim to get across is that there are a LOT of MS patients who deal with this exact issue... Mostly everyone I know in fact and it shouldn't be that way... Doctors have a Job and that's not to walk around protecting their ego and insuring people call them "Dr. So and So". No, it's to help people: Hear that doctors? Your Job is to HELP people, so do your job and do it right, please! It's really not that hard...

So until I can find a good, responsible, caring, doctor, I have no choice but to work with the system, I got. If I'm going to have to play doctor half the time then I am going to get what I want ALL the time... I know how I sound right now, really, I do, but you know what, this is how I HAVE to be, this is the attitude I HAVE to have in order for me to accomplish something positive with my health. I know what is wrong with me, I know what problems I have, and I am the only one who has taken the time to really research those problems and the possible solutions for them in depth. My doctors have done no such thing. So yes, I do believe that my treatment ideas are better then what has been so far recommended to me: nothing.

So I will continue seeing doctor after doctor until I find one that will actually listen and take what I have into consideration rather then immediately going into self-defense mode to protect their ever so fragile ego. I should be able to go to a neurologist and say "look this this and that didn't work, I feel like this, so I was thinking we* should try this and look into alternative means of treatment such as this and that" without that doctor shutting me down and ignoring everything I have to say simply because they don't want to hear me playing doctor.

If you don't want your patients playing doctor then don't put them in a position where they feel they have to...

I want to get better and I want to get better more than my doctors want me to get better so I will continue to play doctor until I get what I want and that's ultimately to get healthy again. I will continue to learn on my own, learn from others, and maybe even start schooling so that I can confidently say I know what I'm talking about. Sure most neurologist probably went over Multiple Sclerosis briefly in college but guess what, I have a vested interest in this information and in making sure that I have my facts straight so believe me when I say, if I am going to play doctor, I am going to play a doctor who is doing their job RIGHT.

Don't Stop Learning!


This concludes the 88th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on June 2, 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, May 31, 2011.

Thank you.

Comments for this post.

Friday, May 20, 2011

13 more cases of PML in Tysabri patients, 1 more death reported (totals equal 124 and 23, respectively)

Biogen Idec provides the latest information regarding the number of PML (progressive multifocal leukoencephalopathy) cases in multiple sclerosis patients using Tysabri (natalizumab). I am adding below an updated chart detailing the number and location of PML cases, including the number of deaths among those diagnosed with PML.

Out of the 124 reported cases of PML in MS Tysabri patients, 23 patients have died to date. Click for larger image:

Printed below is the press release as published on the Multiple Sclerosis Resource Centre's website:
1 death and 13 more cases of PML in Tysabri MS Patients

Biogen Idec Inc. reported 13 more cases of a rare brain infection occurring in multiple-sclerosis patients taking the drug Tysabri, sold with Elan Corp, bringing the affected patients to 124 as of May 4.

The Weston, Mass., biotech company said there was one more death among those patients, bringing total deaths to 23.

The incidence of the infection--progressive multifocal leukoencephalopathy, or PML--is updated monthly and is closely watched.

Tysabri is seen as a highly effective medicine for the debilitating condition, but it is mostly used for patients that have stopped responding to other MS drugs or have particularly aggressive cases. Biogen is developing a blood test for antibodies to a specific virus, JC virus, something that may better determine the chances of patients contracting PML. The test received CE Mark approval in Europe earlier this year and the companies are conducting large studies of its effectiveness.

Many people carry JC virus and it causes no harm, but some biologic drugs that modulate the immune system, including Tysabri, appear to promote activation of JC virus in some patients, leading to PML.

European regulators recently recommended Tysabri's label include language indicating that JC virus antibody status is a PML risk factor. In the U.S., Biogen and Elan have proposed making a similar change. The U.S. label was updated last month to include the updated incidence of PML. Regulators monitor cases of PML as they occur and have said that the benefits of the medicine outweigh the risks.

Tysabri was withdrawn from the market in 2005 and relaunched in 2006--because of its effectiveness--with a strict access plan that regularly monitors patients. The overall global PML rate is now at 1.44 per 1,000 patients. Of the total PML cases, 49 were in the U.S., 69 were in the European Union and six in other areas. The risk of the infection generally increases with the number of monthly intravenous infusions that a patient receives, but that rate drops after 30 months.

Biogen is studying this apparent decrease, warning that there is limited information from patients on the drug longer than 36 months.

The most-recent data translate to a rate of 2.18 cases per 1,000 patients on the drug for a year or longer, rising to 2.76 per 1,000 for those on the drug for two years or longer, and dropping to 1.6 for more than three years. Looked at another way, the rate is about 1.89 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.49 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

Source: ADVFN Copyright 1999-2007 ADVFN PLC (20/05/11)
MSRC http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479

Wednesday, May 18, 2011

What is Jaccoud's Arthropathy?

Known as chronic post-rheumatic polyarthrosis and described by a French clinician in 1869, this type of arthritis somewhat resembles rheumatoid arthritis..  Joint deformities are primarily in the hands, characterized by muscle atrophy, severe ulnar deviation and flexion at the big knuckle (or metacarpal-phalangeal) joints.  


Rheumatic fever is an inflammatory disease affecting connective tissues throughout the body, specifically involving the heart, joints, brain, and skin.  It can develop after infection with the streptococcus bacteria which causes strep throat and scarlet fever.  Rheumatic fever is no longer common in the United States, but it is the leading cause of rheumatic heart disease throughout the world.

Read this post in its entirety:

Chronic Post-Rheumatic Polyarthrosis: What is Jaccoud's Arthropathy?

Monday, May 16, 2011

That's really considered to be arthritis?

It's Arthritis Awareness Month and earlier this month, I examined the list of 100 forms of “arthritis and related diseases” provided by the Arthritis Foundation.  In doing so, I discovered diseases which I would have (as a layperson) thought to be rheumatic in nature, but which I did not associate with arthritis necessarily. 

For instance, Raynaud’s syndrome is among the list of 100.  I asked my mother, “did you know that Raynaud’s disease is listed as a type of arthritis?”  She lives with this disease and responded, “No! How is that a type of arthritis?”  We had a brief discussion on the way the list of 100 was presented and I noted that it includes diseases which can cause secondary arthritis-like symptoms, diseases which affect connective tissue, and even diseases related to the vascular system.

To help illustrate the list of 100 forms of arthritis found on the Arthritis Foundation website, I created this Wordle.  I think it presents an interesting representation of the many diseases included under the umbrella term, arthritis.



Read this post in its entirety:

Arthritis Awareness Month: More Than 100 Types of Arthritis and Related Diseases

Saturday, May 14, 2011

Do you have spinal lesions?

The lesions caused by multiple sclerosis can occur anywhere within the central nervous system  which includes the brain, the spinal cord, and the optic nerves.  Approximately 55-75 percent of patients with MS will have spinal cord lesions at some time during the course of their disease.  If a patient does have lesions in the spinal cord, he/she may be said to have Spinal MS.  A smaller number of MS patients, approximately 20%, may have only spinal lesions and not brain lesions.  (see emedicine.medscape.com)  I am an example of one of those 20% of MS patients who only have spinal lesions.

Spinal MS occurs more commonly with lesions in the cervical spine (the neck area) in approximately 67% of cases.  Lesions in this area often affect the corticospinal tract.  Neurological signs which indicate lesions in the corticospinal tract include the Babinski Sign and the Hoffmann Sign.  Additional indicators of lesions in the upper spine include the l’Hermittes phenomenon and the Romberg Sign.  At one time or another, I have shown each of these signs of neurological involvement/interference due to MS lesions.

Read this post in its entirety:

What is Spinal MS?

Wednesday, May 11, 2011

Arthritis Awareness Month and Extraordinary Interviews

May is National Arthritis Awareness Month and MyRACentral is celebrating with weekly contests, informative posts, wonderful interviews and more.  In fact our expert Sara Nash (of The Single Gal's Guide to Rheumatoid Arthritis) conducted a wonderful interview with Chef Seamus Mullen who lives with RA.

This morning I just finished reading the autobiography of Byron Janis - Chopin and Beyond: My Life in Music and the Paranormal in preparation for an interview I will be conducting with him later this month. Byron Janis is a concert piano who is well-known as a child prodigy and Vladimir Horowitz's first pupil.  His career has been amazing to say the least.  Byron was diagnosed with psoriatic arthritis in 1973 and continued performing for years, only informing a handful of people of the diagnosis and the pain he endured.  He is now a spokesperson for the Arthritis Foundation and is generously sharing his time and story.

Here are videos which were found on YouTube of previous interviews and performances by Byron Janis.  Watch and enjoy.  I promise to tell you more about the book and about Byron's life's story.  I will also certainly tell you about our interview when the time comes.

NBC Today Show Katie Couric Interview with Byron Janis


Sergei Rachmaninoff - Rhapsody on a Theme of Paganini, Op.43


(First of three videos presenting the complete performance)
Orchestre Philharmonique de l'ORTF, Paris, 1968
Conductor: Louis de Froment

Monday, May 9, 2011

Welcome new blogs to the MS blogging community

Maybe MS Truth - Toots
Often a wilted flower, MS is a thin description of who I am. I have MS, I try not to suffer with it. I sometimes do mad things, partly because of it. I think I remember who I was before I knew I have MS. I am learning to process who I am now - WELCOME to the journey of discovery.

A day in my fight again MS - Karen
I was diagnosed with ms in 1992 when I was 23 years old. The ms has been fairly quiet for the past 18 years. I am currently enduring the most severe flare-up yet. I have spent a lot of time over the past few months reading blogs about other peoples bravery in dealing with ms. The purpose of this blog is to help me feel like I'm not in this alone, for no one really understands what we are going through like someone else with ms does.


1st Multiple Sclerosis Station - RaeReflections
BlogTalkRadio

MS Krispies - Jen
I was diagnosised with M.S. in January of 2008 & have had Asthma since I was 4. I am very determined to see what a change in food, exercising and quiting smoking does for my M.S. There are so many what if's with M.S. so, I thought what if I gained optimal health what if it helps my M.S. Why should I sit around waiting for the day when I wake up and can't move. All I have is right now! Thanks to the support of my loving family here I go....

runwithms -
Running has been my passion since college. I never competed until almost 20 years later. To me running to win was never the goal, running to run was more what I am into. When I was diagnosed with relapsing/remitting ms my first thoughts were how is that going to change my life. I am determined to answer that "not much."
(I recommend that you subscribe to the RSS feed because going to the blog does not take you directly to the home page.)


Parenting with MS - Tauna Bowman
I am not a therapist but I am a 48 year old ordained minister, married to Kirk for 17 years, I am the mother to five wonderful children...

swisslet - 52% intelligent. 9% modest. More monkey than bear.


Multiple Miss - A voice for the invisible, but no longer silent, disease


Living with MS -



Sunday, May 8, 2011

Happy Mother's Day

HAPPY MOTHER'S DAY!!

video


To all the mothers who love their kiddos even while they are trying to get someone else's attention for playtime.

Thursday, May 5, 2011

Carnival of MS Bloggers #87

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

cycles in life and hope

By Mary K. Mennenga

Learning your capable of doing something doesn't mean you should
Time teaches us we aren't as smart as we thought
When we become willing to admit this, that's when growth begins
We no longer need to be told what someone else thinks
The answer to our question is
We begin to seek out the answers for ourselves
To the questions that the answers bring to mind
Creating even more answers that need questioning
As we begin to make decisions about what we believe the truth is
Who we are and what's important to us and why
We learn that each choice we make will change
What choices and options are available to us
It becomes a lifelong cycle of questions, answers
Learning and personal growth making decisions and choices
It's a kind of learning that you learn as you go
So don't judge yourself too harshly
This never-ending cycle helps you become
The person you know you want to be
It's a journey that no matter what you do
Still takes a lifetime to finish


Well coordinated
by Toots of Maybe MS Truth

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.
  • a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.
  • b) Unusually for me, these particular knickers are patterned with red cherries.
  • c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.
I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.


by Maryann of MS and ME


These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.


by Jodi Bean

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the other one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have work the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has MS.

Author Unknown

I changed the last line of this poem to "who has MS." It was written for another use but rings so true for people living with MS. As a social worker and as a person I try not to be judgmental or to make assumptions about people. I often say to myself and/or co-workers "until I've walked a day in her shoes I'm not going to judge/assume." I think it is a good motto to live by.

I don't know what it is like to live someone else's life. Life is different for everyone. Everyone's journey is different. I walk in my shoes on my journey which has been shaped by MS. I can honestly say that it has greatly impacted everything I do and every decision I now make. But my journey is not a sad journey or an angry journey or even a depressing journey. Yes there are bad days and my future health is unknown. But there are also a lot of good days, great days, happy days, time with family, vacations, time with friends, dinners out, sunny days, good books, funny reality tv shows, laughs, drinks, memories, support, love and HOPE.

My journey is filled with hope. Hope that one day I won't walk my journey in shoes with MS. I hope that one day there will be a cure. I hope that I will continue to be strong and happy and motivated. I hope I will never give up the fight against MS.



This concludes the 87th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 19, 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, May 17, 2011.

Thank you.

Comments for this post.

Wednesday, May 4, 2011

Pharma Needs to Think Carefully How They Wish to Interact with Patients

Just discovered that my Pecha Kucha presentation given at the e-Patient Connections conference in Philadelphia last September 2010 was indeed posted online. Thanks Kevin Kru.

The title of the talk was "Through the Looking Glass - A Patient's View of Interacting with Pharma." It was given in a very organized fashion. Only 20 slides which were each displayed for 20 seconds. At the end of the last slide, the presentation was complete.



Gotta admit - doesn't look/sound too shabby.

Monday, May 2, 2011

Marbles for MS: 5-yr old Connor raised more than $5000

Young Connor Grossman did it!! Congratulations!

Five-year-old Connor of Marbles4MS exceeded his goal of raising $5000 for the NMSS, nearly reaching $6000 buy selling his beautiful paintings which are made with marbles, paint, and a cigar box.  This is just the beginning for Marbles for MS.

Connor and his family have developed tremendous momentum and will continue raising funds for the National MS Society, a patient advocacy group which supports research into the cause and treatment of MS.

The Grossman family has many reasons to want to cure MS.  Connor's mother Annette was diagnosed with MS after Connor was born.  By coincidence, MS runs in Connor's father's family with his sister, aunt and some cousins all diagnosed with MS.

Connor's paintings which are made by dipping marbles into paint, dropping them on a piece of paper in the bottom of a cigar box, and shaking generously, remind me a bit of American artist Jackson Pollock.


I've ordered four of Connor's signed paintings and am looking forward to seeing what he has created.  I highly recommend that you read the following articles and watch the accompanying videos.  You will learn about why Connor has created Marbles4MS and I trust you will become as inspired as I have by his talent and vision.

Media Coverage:

Webster/Penfield Post articles - Five-year-old makes art to 'fix Mommy'
NBC WHEC 10 - Five-year-old sells his paintings for charity at MS Walk

NBC WHEC 10 - Boys artwork helps in the fight again MS
NBC WHEC 10 - Five-year-old boy starts "Marbles for MS" to help cure his mother's disease (includes video)
ABC WHAM 13 - Marbles for MS (includes video)
CBS WROC 8 & FOX 31 - Boy Holds Fundraiser to Cure Multiple Sclerosis (includes video)


Marbles for MS T-Shirt

Sunday, May 1, 2011

Navigating Your Health Narrative - Relive the Webinar

If you missed the WEGO Health webinar or would like to listen to it again, you are in luck!!  Below is hour-packed presentation given by Jenni Prokopy, Amanda Dolan, and myself on April 21, 2011.  I'm told that we had record-breaking attendance and  I know that we had a lot of fun.

The Twitterverse was alive with discussion while we webinar-ed and you can read Amanda's recap on WEGO Health's blog. You may also be interested in checking out previous webinars hosted by WEGO Health.  As always, thank you so much for reading and supporting our (my) efforts online.  I appreciate it greatly.