Friday, August 29, 2008

Brass and Ivory gets a HornDog Review

I just want to say thank you to Bruce, Horndoggie extraordinaire, for the charming shout-out today.

Bruce wrote a touching review of "My Horn, the Metal Taco" story and the installments of My Story, beginning with "Eyes in the Back of My Head."

As time goes on, I will add more installments to the story.

Thank you Bruce.


I also want to take this opportunity to thank those who have donated funds toward the purchase of a special air cushion for Herrad in Amsterdam.

So far, we have raised $300 which is half of what is needed.

Thank you, thank you to the donors who know who they are.

Thursday, August 28, 2008

Carnival of MS Bloggers #18 - Illusion Edition

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

"Loved Ones, Nuances, and Illusions"

Tricia of Middle Age Mania shares what is like to be
"Married to the MonSter..."

When I met my husband in December of 1997 he was already diagnosed with MS - had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how "in shape" he seemed.

I knew about MS - a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend's mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R (relapsing remitting) MS - he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don't want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he'd beg off due to heat when it really wasn't hot because he just doesn't want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I'm wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation - he had the steroids to halt it but this time they didn't work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn't admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it's gone for good.

My handsome husband with the runner's build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard - use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn't feel like he's getting better. I do think his memory loss is better. For awhile he couldn't remember from day to day things that happened or people said. And he wouldn't admit it was him instead accusing the other person of not having told him. This rarely happens these days - if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel - scared, helpless, alone - and I don't have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn't seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in "wait until he dies" basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.

Amy of MS Life of Learning shares an internal observation
in "Silent Clammor"

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I'm feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day's distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn't be the same. While the details on the outside were identical to yesterday's, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven't known for some time.

So many take a stairway trip for granted. I've watched how effortless it is for most - not a second thought, never even grabbing the handrail. I haven't had that luxury since I was 20. But today, I added a little skip to my downward trend. Taking a moment to experience that minor change, and relish it later as I write- it's a nuance that excited me for what I might notice on the way home.
Wish me luck.

I'm sure by now you've all seen the famous optical illusion of the old woman/young woman in the above picture? You DO see both images, right? The old woman has a feather in her hat as does the young woman looking over/toward her right shoulder?? If not, keep staring at will come to you...eventually.

I've decided Multiple Sclerosis is like an optical illusion...very little about the dayumed disease is truly visible, and yet we SEE the disease showing up in our every day lives via fatigue, pain, vertigo, visual changes, etc., because we are LIVING with it. All those nagging symptoms that remain most likely UNSEEN on MRI, blood work, or even physical exam are easily identified through the eyes of an MSer. But for those "outsiders" that just catch glimpses into an MSer's life, it is even more difficult to understand what they cannot "see".

I have a strange hope that if they just stare at us long enough (metaphorically speaking or not!), eventually their vision will adjust to what we MSers see on a daily basis...both the obvious and the hidden parts of this disease. It's just a late night thought...

Shauna of Bugs, Bikes Brains tells a story of Shakespeare, King Lear, and Illusions
When I got to university, conicidentally the same one my father attended, I chose to take sociology rather than English. I had had enough of trying to figure out what authors were alluding to. However, by my third year, I needed more electives to fulfill my degree requirements and I ended up taking a first year English course from a legendary prof, sometimes referred to as Snapper. I was heavily involved with campus radio at the time and he asked me to produce a radio play our class was going to write based on Gulliver's Travels. That was a blast. He also had us divided into groups to come up with a board game based on Beowulf. That was a lot of fun, too.

Strangely enough I ended up taking more English courses, including 20th Century American and British Lit from my own Dr. Phil and a drama seminar from Snapper. Snapper was so-called because of his extremely dry and quick wit. In the drama seminar we studied a number of plays dating from ancient Greek and Roman times to the 19th centruy. I admit I was lost during much of the seminar, just not able to see through to the deeper meaning of most of the plays. I guess I was too linear in my thinking at the time as my abstract thinking has improved with time.

I don't recall which Shakespeare play we looked at in that class, but the same week we were studying it, a Garfield cartoon appeared in the Sunday comics that made it all clear to me. I've done a brief inernet search and can't find the exact strip but the punchline was "Things are not always as they appear to be".

I had a brilliant moment of clarity. Suddenly, Othello, which I had seen at Neptune Theatre in Halifax in Grade 9, King Lear from Grade 12 and now my university Shakespeare play made complete sense. I took the comic strip to Snapper's office and placed it before him. "This is it, isn't it? This is what it's all about!" You'd think I had just won a Nobel Prize or Olympic medal, I was so proud. Snapper read the strip, nodded, and said, "That about sums it up".

Since then I have enjoyed a few Shakespeare plays, live, and movie versions. After watching Mel Gibson's Hamlet, I asked my mother to make me a cape like the one Mel wore in the movie. I wear it a couple of times a year on chilly fall and spring evenings with a huge, gorgeous, Scottish brooch on the shoulder to hold it in place.

Several years ago I was tutoring a friend's younger sister. This girl was extremely bright but was having difficulty in written communication. We were working on her writing skills for her English course in which they were studying Romeo and Juliet. She was able to identify scenes and acts to illustrate points her teacher had made, something I could never have done in a million years. While working with her, I let her in on the secret to Shakespeare.

Remember Three's Company? Every single episode revolved around a misunderstanding of some sort where things were never what they appeared to be.

My dad's father, my grandfather, gave my mother a copy of Shakespeare's complete works. It's a 100 year old, leather-bound book that now sits on my shelf. I rarely open it as I still find the language tedious to read and the internet makes it so much easier to look up a reference.

The whole point of this post, inspired by Linda at Brain Cheese, is that like Shakespeare's plays, MS offers up as its theme "Things are not always as they appear to be". Some of us are walking, talking, biking illusions. We have MS but don't appear to have anything wrong at all. Some of us have mental deficits that have resulted in having to retire from the workforce early. Some of us have physical deficits that belie the mental acuity we have maintained.

Looking at an MRI filled with lesions of the brain, one may conclude a severe disability. Or one lesion may lead to the conclusion of no disability or even symptoms. But we know that presence and number of lesions don't always correspond to disability. And that's why MS is an illusion, a Shakespeare play. We have lesions we want to be rid of, no matter the amount of damage they do. And that's why, like Lady MacBeth, our universal cry is "Out damn spot!"


This concludes the 18th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 11, 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, September 9, 2008.

Thank you.
Comments for this Post.

Wednesday, August 27, 2008

"National MS Disease Registry Act"

Have you ever questioned the NMSS estimate of 400,000 Americans living with multiple sclerosis?  I have.

Read -  ‘‘So How Many People in the US have MS?’’  -  Then come back here to continue.

In April, a bill was introduced in Congress which would provide us with an accurate accounting of the prevalence of MS in the United States in addition to much greater depth of information regarding the disease.

The bill is known as H.R. 5874 - the National MS Disease Registry Act and the following is a summary.

Congress makes the following findings:
  1. Multiple sclerosis is a progressive, disabling disease that affects the brain and the spinal cord causing loss of myelin, damage to axons, and cerebral atrophy.
  2. MS is a prime-of-life disease with an average age of onset at 30 to 35 years of age.
  3. The causes of MS are not well understood.
  4. There is no known cure for MS.
  5. There are several drugs currently approved by the Food and Drug Administration for the treatment of MS, which have shown modest success in reducing relapses, slowing progression of disability, and limiting the accumulation of brain lesions.
  6. More than 10,000 individuals in the United States are diagnosed with MS annually, and it is thought that more than 400,000 individuals in the United States have MS.
  7. Studies have found relationships between MS and environmental and genetic factors, but those relationships are not well understood.
  8. Several small and uncoordinated MS registries and databases exist in the United States and throughout the world.
  9. A single national system to collect and store information on the incidence and prevalence of MS in the United States does not exist.
  10. The Agency for Toxic Substances and Disease Registry (ATSDR) has established a series of small pilot studies, beginning in fiscal year 2006, to evaluate the feasibility of various methodologies that might be used to create a MS surveillance system at the national level.
  11. The establishment of a national surveillance system will help—
  • to identify the incidence and prevalence of MS in the United States;
  • to collect data important to the study of MS;
  • to produce epidemiologically sound data that can be used to compare with MS cluster information, data sets of the Department of Veterans Affairs data sets, and other information;
  • to promote a better understanding of MS;
  • to better understand public and private resource impact;
  • to collect information that is important for research into genetic and environmental risk factors for MS;
  • to enhance biomedical and clinical research by providing a basis for population comparisons; and
  • to enhance efforts to find treatments and a cure for MS.



1. IN GENERAL.—Not later than 1 year after the receipt of the Report, the [HHS] Secretary, acting through the Director of ATSDR and in consultation with a national voluntary health organization** with experience serving the population of individuals with multiple sclerosis, shall—
  • develop a system to collect data on MS including information with respect to the incidence and prevalence of the disease in the United States; and
  • establish a national surveillance system for the collection and storage of such data to include a population-based registry of cases of MS in the United States.
2. PURPOSE.—It is the purpose of the Registry to gather available data concerning—
  • MS, including the incidence and prevalence of MS in the United States;
  • the age, race or ethnicity, gender, and family history of individuals who are diagnosed with the disease; and
  • other matters as recommended by the Advisory Committee.


1. ESTABLISHMENT.—Not later than 180 days after the date of the enactment of this section, the Secretary, acting through the Director of ATSDR shall establish a committee to be known as the Advisory Committee on the MS National Surveillance System. The Advisory Committee shall be composed of at least one member representing each of the following:
  • National voluntary health associations** that focus solely on MS and have demonstrated experience in MS research, care, or patient services.
  • The National Institutes of Health, to include, upon the recommendation of the Director of the National Institutes of Health, representatives from the National Institute of Neurological Disorders and Stroke, the National Institute of Environmental Health Sciences, and the National Institute of Allergy and Infectious Diseases.
  • The Department of Veterans Affairs.
  • The Department of Defense.
  • The Agency for Toxic Substances and Disease Registry.
  • The Centers for Disease Control and Prevention.
  • Patients with MS or their family members.
  • Clinicians with expertise on MS and related diseases.
  • Epidemiologists with experience in data registries.
  • Geneticists or experts in genetics who have experience with the genetics of MS.
  • Statisticians.
  • Ethicists.
  • Attorneys.
  • Other individuals, organizations, or agencies with an interest in developing and maintaining the MS National Surveillance System.
2. DUTIES.—The Advisory Committee shall review information and make recommendations to the Secretary concerning—
  • the development and maintenance of the MS National Surveillance System;
  • the type of information to be collected and stored in the System;
  • the manner in which such data is to be collected; and
  • the use and availability of such data including guidelines for such use.
3. REPORT.—Not later than 1 year after the date on which the Advisory Committee is established, the Advisory Committee shall submit a report concerning the Review that contains the recommendations of the Advisory Committee with respect to the results of such Review.

GRANTS.Notwithstanding the recommendations of the Advisory Committee, the Secretary, acting through the Director of ATSDR, may award grants to, and enter into contracts and cooperative agreements with, public or private nonprofit entities for the collection, analysis, and reporting of data on MS.


1. IN GENERAL.—In establishing the MS National Surveillance System, the Secretary, acting through the Director of ATSDR, shall—
  • identify, build upon, expand, and coordinate existing data and surveillance systems, surveys, registries, and other Federal public health and environmental infrastructure wherever possible, including—
    (i) the 2 MS surveillance pilot studies initiated in fiscal year 2006 by the Centers for Disease Control and Prevention and the Agency for Toxic Substances and Disease Registry;
    (ii) the MS database of the Department of Veterans Affairs;
    (iii) current MS registries, including the New York State MS Registry and the North American Research Committee on MS (NARCOMS) Registry; and
    (iv) any other existing or relevant databases that collect or maintain information on neurological diseases identified by researchers or recommended by the Advisory Committee; and
  • provide for research access to MS data as recommended by the Advisory Committee to the extent permitted by applicable statutes and regulations and in a manner that protects personal privacy consistent with applicable privacy statutes and regulations.
2. COORDINATION WITH OTHER FEDERAL AGENCIES.—Notwithstanding the recommendations of the Advisory Committee, and consistent with applicable privacy statutes and regulations, the Secretary shall ensure that epidemiological and other types of information obtained are made available to agencies such as the National Institutes of Health, the Department of Veterans Affairs, and the Department of Defense.

**For the purposes of this section, the term ‘national voluntary health association’ means a national nonprofit organization with chapters or other affiliated organizations in States throughout the United States.

AUTHORIZATION OF APPROPRIATIONS.—There are authorized to be appropriated to carry out this section $5,000,000 for each of fiscal years 2009 through 2013.

Tuesday, August 26, 2008

A Friend and MS Blogger in Need

Hello All,

You may know that Herrad of Access Denied: Living with MS is in desperate need of a special type of air pressure cushion. What she needs is an air cushion which changes pressure as you sit on it to prevent the development of pressure sores.

Unfortunately, in the Netherlands access to such expensive and specialized equipment is severely limited and Herrad has not been provided with this important tool. In fact, she is now in such a state to require 3-weeks of bed rest in an attempt to heal wounds.

This is a struggle she has dealt with for awhile, often asking questions regarding treatments we might use in the US to help heal/prevent open sores from developing.

Anne of Disabled Not Dead has started a campaign to collect funds to provide Herrad with the equipment she so desperately needs.

I have decided to contributing all of the existing funds in my PayPal account and have set it up to accept donations specifically for the purchase of Herrad's special cushion. The cost for one to be custom-made for her wheelchair is approximately $600.

I am leaving it up to Anne to make the actual purchase arrangements as she knows exactly what it is that Herrad needs. If you don't already know, Anne's career was in medicine and this is her expertise.

So please, to donate to Herrad's Cushion click on the PayPal Button below. Together we can make this happen for a fellow MS Blogger in need.


This is the cushion which Herrad's nurse and ergonomist recommend.


Monday, August 25, 2008

A Favorite Blogger Moves On To Other Endeavors

Today, Diane of A Stellarlife announces that she has completed one year of posting on her blog every single day.

Personally, I will miss getting my daily 'fix' of humor, rants, and inspiration. Diane has shown me through her words that we truly are not our disease, but so much more.

She has come to my defense when I felt attacked in a string of comments. She has emailed words of encouragement to me when I shared with her potential opportunities coming my way.

I have a fondness and admiration for Diane and all that she does to empower those living with MS and those living with disabilities and chronic illness at large.

Diane, I wish you only the very best.

Thank you.

Saturday, August 23, 2008

Navigating the Wonderland - New MS Blogger Alert

Kelly says, "I'm a student, artist, dancer and musician. When I am not painting, sewing or running around, I like to write!"

And apparently Kelly really likes to run, as she ran in the San Francisco Marathon just weeks after being in the hospital for MRIs, Lumbar Puncture, etc.  You know the MS routine. 

Welcome Kelly to "the club" as she chronicles her MS journey at:

Navigating the Wonderland of Life with Multiple Sclerosis

On her poetry blog, Kelly shares a recent piece inspired by the all illusive Optic Neuritis:
I found God in the trenches
when blinded by some crime
I know not what I committed
for I sin all the time
The fear of losing vision
has brought me to my knees
with hands clasp, head low
bowing, singing to the breeze:
If I could find redemption
If I could live to See
My prayers and my salvation
Would bring God back to me
So I'm a gypsy trader
Bargaining with fate
singing in morning
till the day grows late
Casting stones into the river
Casting nets into the air
Begging god to bring me vision
lest I parish with despair
And my traps, they bring me courage
I catch stars within their nets
and place them where I see them
and reflect upon regrets
I've found God in the trenches
when blinded by some crime
I know not what I committed
for I sin all the time.

Welcome Kelly to Wonderland.

Friday, August 22, 2008

Why do I talk about MS?

The internet is a powerful tool. As we each sit at a keyboard and screen, in our separate rooms and scattered locations, we touch each other in ways we may never fully know.

For instance, I am so very proud and thankful for my MS Blogger buddies who reached out to Brianna, a newbie "probable" MSer, in a time of frustration and doubt.

My friends, you also touched me in all of your warm well-wishes regarding this recent "little speed bump" in my MS journey. BTW, I'm feeling much better and walked down the stairs this morning without leaning against the wall.

(note to self: Prednisone by itself, not after IVSM, is still no good for you. Stick to the Decadron next time.)

These are two examples why I tell people "I Have MS." It is a way to put a face on an invisible illness and to let others know that we certainly are not alone in this.

Today I also posted at Health Central about the need for a secret handshake or favorite hairstyle.

What might be your suggestions for a way to identify each other? I'd like to hear what you can come up with.

Wednesday, August 20, 2008

Rounding up the MS Posse

I am having such a hard time lately. I am so upset, not having answers and not knowing how to fix what is broken. I keep thinking that the issues I have are all my fault, that if I would have stopped over-thinking things and worrying that I wouldn't have ever gone through what I am going through. Do you think it's possible that a person can worry themselves to a "probable MS" diagnosis?
In June, Brianna is told she has a "mild case of MS", followed by news of "probable MS". On August 14, Brianna started her very first course of 3-day IVSM and is waiting for answers.

Read "Broken" to catch up on what's going on with Brianna now.
Lisa, what can I do? How can I speed up a diagnosis? Who can I talk to? I feel like even though I have been going through this for 4 months, I haven't made any progress. I think my doctors are just waiting for me to show some other MS sign so they can just give me the diagnosis. Is there nothing else they can do? I just want to know when I will get feeling "back in the saddle."
I know many of you have been exactly where Brianna is now. Probable MS. Frustrated and Scared. Juiced on steroids. Just wanting things back the way they were..... before.

So I ask you to join me in letting Brianna know that SHE IS NOT ALONE.

Tuesday, August 19, 2008

Repeat After Me....

This too shall pass.  This too shall pass.

So I had a 3-month follow-up appointment with my neuro on Friday, actually the assistant who's a favorite of mine.  We're developing a pretty good working relationship.

She asks, "so how are you doing?"

Me:  I'd like to say great!!!  But I should go ahead and tell you the truth, right?

"What's going on?"

So this is where I tell her that my right leg is in spasm ALOT lately and won't stop.  I try to remember to up the Baclofen, but keep forgetting and it's not really touching it anyway.

The legs are getting more painful and the room has spun around on a few occasions lately.  Like one big "whoosh" in a full circle then stopped.

Bladder/bowel fine.  Eyes okay - new contacts which might be to blame for some blurry moments.  Growing fatigue.  Wobbly but no falls.  Yep, some numbness.  Etc.

She says, "ok, let's check a few things."  Going through the motions here.

"Squeeze my fingers.  Keep going.  Ok.  Uhuh.  You've got some weakness on the right side."

Me:  What?  But it's my left side that gets weak, not my right.  

So we do it again.  "Notice that shaking....."

Shoot.  I hadn't even really noticed, but there is was wobbling and shaking.

Out comes the safety pin.  "How about that?  that?"

I laugh.  Keep going... higher.... oh, finally.  That almost felt kinda sharpish, but still not ouchy.

Wow.  I didn't know my arm was numb all the way to up there.  Or both legs, and the left arm too.  Sigh.

Vibrating tuning fork on the ankle.  Yep, feel it.  Ooo, that felt pretty good.  Do it again.

Push, pull, resist.  Legs, feet, ankles.

"There's some unevenness in strength.  More weakness on the right."

Babinski's.  Negative.

Walk on toes.  I say, "uh, you know this is the really hard one."

Heel to toe.  Yep, that one is always funny lookin'.

Sit back down.  "Yes, I believe you have a little something going on here."

I ask to try an oral taper this time.  You know, just to nip it in the bud.  Not even worth calling it a relapse.  Minor exacerbation sounds better.  

Really almost nothing, but something.

So that's where I am today.  I started the Prednisone taper on Friday afternoon with 60mg.

60mg sounds so innocuous as compared to 1000mg intravenous steroids.  Just a tiny little 60mg.

But today, I'm a walking marshmellow.  I've caught a cold.  My head is ready to explode.

I have very little appetite.  Have fallen asleep (more like passed out) each of the last three days for at least 3 hours each afternoon.  Good thing I don't have any lessons to teach until after Labor Day.

There's a little tiny part of me that wants to cry, but there's absolutely no reason for it and the eyes are not buying into it either.

I'm tired.  I'm feeling more due to less numbness.  And I was actually starting to feel better before the steroid fog rolled in.

So here's to the mantra.  This too shall pass.  That too shall pass.

Monday, August 18, 2008

A Little Self-Promotion Never Really Hurt Anyone

Hello All,

I have had a nice first week over at Multiple Sclerosis Central and am still kinda learning the ropes. Previously, I was unaware of the Question/Answer section of the website but am now intrigued with the mini-forum.

Some questions are easy to answer like this one regarding EMG: What is this and how do they do it?

But some are harder to answer if you simply don't know the answer like this one: How many spinal taps can you get before it causes bodily injury?

I don't know. Do any of you know a good answer for that one?

A cool thing which the folks over there made for me was a widget of my very own. You may notice that I've placed one on the sidebar.

(over there --------->>> and maybe down a little)

You are welcome to grab it to place on your own blog or facebook page, or whatnot. Just follow this link to grab the code:

Then I experimented and made widgets for Brass and Ivory and the Carnival of MS Bloggers. Feel free to grab them too, if you wish.

So basically, I'm attempting to practice some self-promotion here and would love it if you'd visit me there on occasion to read my SharePosts and those of others touched by MS, personally or professionally.

You might recognize a few topics which seem vaguely familiar to ones previously discussed here. But the important topics always deserve to be revisited, such as these:

Thank you, my friends, for continuing to read. Here, There, and Over Yonder.

Sunday, August 17, 2008

New MS Blog Alert!!

A new MS blog has arrived on the block.  This 'young' MSer is interested in pursuing the HiCy Protocol (High-dose Cyclophosphamide) at Johns Hopkins.  She has conducted research into the matter and followed the experiences of those who have undergone the Protocol. was founded in 2008. Its name is derived from a quasi-hysterical and melodramatic telephone conversation in which the primary author of the blog screamed at her own mother: “Look, Mom. This is chemo we’re talking about here, ok? It’s not like I am asking you for a pony or something. CHEMO IS NOT A PONY, MOM, OK?!?!?! IT’S NOT.” The author of this blog subsequently collapsed on the pavement of a bustling urban sidewalk, repeating: “Chemo is not a pony, Mom. It’s not…” while drooling a mixture of snot and tears onto the asphalt. And yes, the author does realize, in retrospect, what a ridiculous spectacle this whole situation was.

But remember when you were a kid and you’d ask your parents for outrageously priced things, like a pony? Well, I was asking for help to fund the Johns Hopkins HiCy Protocol in the event that my insurance will not pay for it.

I have RRMS (Relapsing-Remitting Multiple Sclerosis), and I believe that aggressive treatment with HiCy may be my best chance at living a full, healthy life. This site is about my journey as I explore the possibility of pursuing the treatment.
Here's an excellent article describing some of the history of the HiCy Protocol:

Convinced they hold the cure for a host of autoimmune diseases, Hopkins researchers have refused to give up in the battle for acceptance. Now success is in sight.
Johns Hopkins presented this press release in June 2008 regarding results of the Protocol:
"HiCy Drug Regimen Reverses MS Symptoms in Selected Patients"

A short-term, very-high dose regimen of the immune-suppressing drug cyclophosphamide seems to slow progression of multiple sclerosis (MS) in most of a small group of patients studied and may even restore neurological function lost to the disease, Johns Hopkins researchers report. The findings in nine people, most of whom had failed all other treatments, suggest new ways to treat a disease that tends to progress relentlessly.
I asked my neuro nurse (aka MS nurse practitioner) on Friday about several MS drugs in the pipeline and those undergoing more study.  Her opinion was that the HiCy Protocol shows great promise.
  • A difficulty has been the availability of stem cells for infusion after the chemo to "reboot" the immune system.
  • Once the scientists figured out how to "purify" your own stem cells from your bone marrow, it has become a more successful procedure.
  • Next challenge will be how to soften the intensity of the chemo required for the Protocol to work.  Currently, there are very strict guidelines to protect from infection since the patient's immune system is completely brought down to zero (ie. no raw food, no contact with people, etc.)
  • When a way to make the Protocol easier on the patient, she believes that this just might be the closest thing to a cure for patients earlier in the course of their disease that we have seen thus far.
  • It will be very interesting to watch the continued research.
There is an active discussion of Revimmune (HiCy, cyclophosphamide, cytoxan) at the This Is MS forum board.  One of the more known MSers online who has undergone this Protocol is Chris of .

Saturday, August 16, 2008

The doctor never said the words, “You have MS.”

[Begin reading my story with Eyes in the Back of My Head]

When I attended my first ‘newly-diagnosed’ meeting at the Neurology Center, patients were asking each other, “When were you diagnosed?”

The month was September 2005 and I recognized one of the other patients with whom I shared space at the Infusion Center in August. She was one of those MS patients who had received a quick diagnosis, not even requiring a lumbar puncture (aka spinal tap) to test for the presence of oligoclonal bands which are seen in the spinal fluid of 90-95% of multiple sclerosis patients.

“I haven’t been yet.”

That’s right. I had already undergone two rounds of MRIs; the first as directed by my primary care physician to look for the cause of a ‘pinched nerve’ in my neck, the second as directed by the neurologist from whom my doctor wanted an expert opinion. I had one lesion in my cervical spine (neck) but my brain appeared normal, although 5% of confirmed MS patients do not initially have brain lesions on MRI, according to the National MS Society.

It was after the results from the spinal tap came back that the infusion nurse called me on a Friday afternoon to schedule a 5-day course of Intravenous Solumedrol (IVSM) the following week. My road to diagnosis never included a hospital visit.

“So does it say in my chart whether it’s MS or not?” I asked the nurse as she was preparing to start the IV.

“What did the doctor tell you?”

“He didn’t yet,” I replied.

She gets the high-dose steroid drip started.

“Let me go find out what I can.” When she returns to the room of IV-laden folk, she informs me that the doctor is on vacation and that he’ll have to speak with me when he returns.

“But you wouldn’t be here if there weren’t a very good reason the doctor wanted you to have the steroids,” she adds.

I think it was Thursday when the doctor returned from vacation and the nurse grabbed him to come talk to me while I was tethered to the drip. Somewhere between the muttered words, and yes he tended to mutter and I tended to not be able to understand him, he mentioned demyelinating disease. Non-specific demyelinating disease.

It would be another round of MRIs and two more months before I was officially diagnosed during a doctor’s visit in which he never outright said, “You have MS.”

In the meantime I was invited to participate in the monthly ‘newly-diagnosed’ meetings held at the Neurology Center led by my (now) MS Nurse.

So when asked in September 2005, “How long have you had MS?”

My reply was, “I don’t....yet.”

How about you, how long did you have MS before you had MS?

Friday, August 15, 2008

Please Be Kind to the Horn Player

I guess that some horn players missed a few notes at the Mostly Mozart Festival in New York this past week. But, ouch, what a harsh review.

Personally, I fear that the appreciation of live performance is slowly dying. In a world of recorded music where each sound can be sliced and diced to "perfection," listeners expect that music will always be, well, perfect.

I remember vividly a performance by a player at a Horn Festival years ago. Respected for being top-notch, he was performing the Gliere Horn Concerto, complete with orchestra accompaniment, at one of the opening concerts. Well, he was having a "bad night."

At the finale concert that week, he got up on stage to perform, but what he "performed" was something that absolutely every player in the room had likely wanted to do at least once in their careers (or practice rooms).

He began okay enough, but oops, he started to stomp all over the music. Then he took his horn and THREW it across the floor of the stage. He proceeded to kick it, and stomp on it, and picked it up again only to throw it back down.

At first there were gasped from the audience members, followed by roars of laughter and cheers. Some even applauded the creative performance in action.

What he reminded me was that life is often messy, not perfect, and that we need to be able to laugh at ourselves and not beat ourselves up. Even when we'd love nothing more than to beat our beloved horns to a pulp, we must be kind. Kind to ourselves and kind to our instruments.

So, please, be kind to the horn players. Or they just might come take their frustrations out on you because, honestly, they can't really take it out on their horns.

The French Horn, That Wild Card of the Orchestra
Published: August 13, 2008
Orchestral instruments don’t come more treacherous than the French horn, either for the musicians who play it, or, when the going gets rough, for the listeners who find themselves within earshot.

Thursday, August 14, 2008

Carnival of MS Bloggers #17 - Insurance Edition

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

"Cash, Credit, or Co-Pay?"

Coming to us from a London adventure in the land of free health care, Nina who blogs at Planning the Unpredictable discusses Insurance.
Since going blind in May, my insurance has paid out the following:

  • $1,500 for the Eye doctor
  • $1,000 for the Neuro doctor
  • $2,500 for the MRI
  • $1,000 for the Neuro doctor
  • $500 for the Neuro doctor
  • $6,000 for three months of Copaxone
  • $4,500 for the Spinal MRI
  • $400 for the IV Steroids
  • $1,000 for the Neuro Doctor
  • $500 for the Neuro Doctor
Total: $12,900 Medical Care and $6000 Drug Coverage
Nina's Out-of-Pocket: $200
[ed. Seriously? These were the negotiated and paid rates?]
Without insurance, this might have happened:

  • Cash out my retirement
  • Declare bankruptcy (isn’t medical bills one of the main reasons people declare bankruptcy in the US?)
  • Try to qualify for a state run program which wouldn’t allow me to see a qualified doctor
  • Ignore it and not receive any care
  • Get diagnosed but unable to afford Copaxone
My life is NOT worth more than anyone else's, but since I have insurance I get treated like it is. I am insanely lucky. I was diagnosed in a week after going blind. I had no problems with insurance. Out of pocket, it has cost me less than 200 dollars. Again, INSANELY LUCKY.
For more discussion on the contrasting healthcare systems in the U.S. versus the U.K., read the rest of Nina's post.

Next up, Lisa of Brass and Ivory explains that  
Since the relapse this spring, I have finally received all the Explanation of Benefits related to the three doctor's visits, 5-day round of IV Solumedrol, and a trip through the MRI tube.
  • $710 Three Neuro Visits
  • $3825 Solumedrol Treatment
  • $6000 MRI Brain/Cervical
Total Billed: $10,535
  • $5285 Insurance Paid
  • $4550 PPO Discount
  • $700 Lisa (out-of-pocket)
Total Paid: $5,985

Who ever said MS was inexpensive? Nobody I know.

On a different note, Lisa tells us that she just received notice of yet another large rate increase for her insurance premiums.

The chart on the right shows that the greatest increases were seen in the following two-year time spans: 2002-2004 (44%) and 2006-2008 (36%).

As it stands, Lisa's policy now costs $3780 each year, still without coverage for dental, vision, or MS meds.

It's no wonder that individuals with special health considerations are getting married to gain access to insurance coverage or worse getting divorced.

Just read this NYT article.
Health Benefits Inspire Rush to Marry, or Divorce
Published: August 13, 2008
With health insurance out of reach for many, obtaining coverage is factoring into the decision for more couples.

With that, this concludes the 17th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 28, 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, August 26, 2008.

Thank you.
Comments for this post.

Wednesday, August 13, 2008

"Don't Listen to Hear, But Listen for Understanding"

Seriously, what was I thinking?  That patients discussing a particular drug therapy would want additional pertinent information?  That a thread on a discussion board was for sharing ideas and knowledge?

I'm sad.  I'm blown away.  I'm hurt.  I'm shocked (but shouldn't be).

I need to dust the dirt from my feet as I move on and accept that Patients Like Me is not necessarily made up of, well, patients like me.

"Helping through Sharing" was the phrase used to describe PLM, but what was shared was negativity and accusations which didn't help anyone.

Forgive me while I attempt to "eschew the verbiage" and provide a reminder for myself regarding meaningful conversation.  The following comes from Scarboro Missions.

Guidelines for Listening to Others

These guidelines are designed to facilitate healthy dialogue and deep listening and to create a safe space for meaningful conversation on all levels:

WHEN YOU ARE LISTENING, SUSPEND ASSUMPTIONS - What we assume is often invisible to us. We assume that others have had the same experiences that we have, and that is how we listen to them. Learn to recognize assumptions by noticing when you get upset or annoyed by something someone else is saying. You may be making an assumption. Let it be - suspend it - and resume listening for understanding of the other.

WHEN YOU ARE SPEAKING, EXPRESS YOUR PERSONAL RESPONSE - informed by your tradition, beliefs and practices as you have interpreted them in your life. Speak for yourself. Use "I' language. Take ownership of what you say. Speak from your heart. Notice how often the phrases "We all", "of course", "everyone says", "you know", come into your conversation. The only person you can truly speak for is yourself.

LISTEN WITHOUT JUDGMENT - The purpose of dialogue is to come to an understanding of the other, not to determine whether they are good, bad, right or wrong. If you are sitting there thinking: 'That's good", 'That's bad", "I like that" "I don't like that", then you are having a conversation in your own mind, rather than listening to the speaker. Simply notice when you do this, and return to being present with the speaker.

SUSPEND STATUS - Everyone is an equal partner in the inquiry. There is no seniority or hierarchy. All are colleagues with a mutual quest for insight and clarity. You are each an expert in your life. That is what you bring to the dialogue process.

HONOUR CONFIDENTIALITY - Leave the names of participants in the room so if you share stories or ideas, no one's identity will be revealed. Create a safe space for self-expression.

LISTEN FOR UNDERSTANDING, NOT TO AGREE WITH OR BELIEVE - You do not have to agree with or believe anything that is said. Your job is to listen for understanding.

ASK CLARIFYING OR OPEN-ENDED QUESTIONS to assist your understanding and to explore assumptions.

HONOUR SILENCE AND TIME FOR REFLECTION - Notice what wants to be said rather than what you want to say.

ONE PERSON SPEAKS AT A TIME - Pay attention to the flow of the conversation. Notice what patterns emerge from the group. Make sure that each person has an opportunity to speak, while knowing that no one is required to speak.

Tuesday, August 12, 2008

The New York Times highlights Rheumatoid Arthritis

These are some take-aways from the article which is shown below.

1. Encourage clinical trial participation and highlight RA patient (2002 article)  
2. Fear mongering of disability and premature death from lack of treatment
3. Early use of costly biologic drugs leading to cost-savings (Abbott)  
4. Combination use of biologic drugs and methotrexate: Humira (Abbott) and Enbrel (Wyeth)  
5. $16,000-18,000 is not expensive, if you consider the cost of disability, disease, and quality of life
6. Physicians need to refer early so patients can start treatment early
7. Fish oil and exercise are encouraged

Information regarding Rheumatoid Arthritis from Johns Hopkins.

Note to MSers: You CANNOT use the biologic drugs in fighting RA due to increased occurrence of demyelinating diseases seen. 

Living Better With Rheumatoid Arthritis
Published: August 11, 2008

Alan Moore was 52 years old, teaching statistics at the University of Wyoming, playing the violin in the university’s symphony and accompanying soloists on the piano when his health took a nosedive in April 2001.

“I felt like I had the flu,” Mr. Moore recalled in an interview last month. “I was very weak and fatigued. I had extreme pain and swelling in a lot of my joints. I was in agony when I got up in the morning, so stiff I had to shuffle to the bathroom. I couldn’t peel a banana, turn the key in the ignition or even pull the tab of a tea bag. My wife, Cindy, had to help me with the simplest of tasks. Needless to say, I couldn’t play the violin or piano or use the computer.”

Doctors diagnosed it as rheumatoid arthritis.

“And I thought that my life as I knew it was over,” said Mr. Moore, now 59, of Laramie, Wyo.

But by enrolling in a clinical trial of one of the drugs and drug combinations that are revolutionizing the treatment of the disease, Mr. Moore got his life back.

Rheumatoid arthritis is the world’s most common autoimmune disease, striking up to 1 in 100 in the course of a lifetime. It is most often diagnosed in people ages 30 to 60 but it can occur at any time, including childhood.

As with other autoimmune diseases, women are three to four times likelier than men to develop rheumatoid arthritis. About 80 percent of Caucasians with the disease have a genetic marker, a gene sequence in the HLA-D region of chromosome 6 that is found in only about 35 percent of the general population.

The disease causes chronic joint inflammation and progressive destruction of the cartilage at the ends of bones, which can result in an inability to use the affected joints. Other effects include fatigue, malaise, anemia and damage to organs throughout the body, including the cardiovascular system.

Untreated, 20 to 30 percent of people become permanently disabled within three to five years of diagnosis. Life expectancy may be reduced by as much as 15 years, with half of patients succumbing to cardiovascular disease.

A Therapeutic Revolution

Doctors traditionally treated the symptoms of rheumatoid arthritis, usually with anti-inflammatory and pain-relieving medications. But the underlying destruction of tissues continued, leading to chronic disability and premature death.

The goal today is suppression of the disease and prevention of progressive joint destruction by treating patients early with synthetic or biologic agents called disease-modifying antirheumatic drugs.

Though he did not know it at the time, Mr. Moore was randomly assigned to the study group that every two weeks self-injected a biologically derived drug called Humira, which acts to block a protein involved in the inflammation associated with rheumatoid arthritis. Humira is one of six federally approved biologic treatments for the disease. Three other biologic remedies are nearing approval by the Food and Drug Administration.

“Within days my symptoms declined to nearly zero,” Mr. Moore said, “and I’ve had no symptoms since.” He has continued the injections of Humira and participates in a registry of patients to help assess the drug’s long-term benefits and potential risks.

Combining Treatments

The costly biologic drugs are often used in combination with much cheaper synthetic disease-modifying drugs taken orally, like methotrexate. In some cases, oral medications are all that patients need to keep symptoms and joint destruction under control.

But well-designed clinical trials have typically shown that in patients facing moderate to severe disease, combining the treatments often results in fewer symptoms and less destruction of joints, especially if therapy begins early.

In a study published July 16 in The Lancet, researchers in Leeds, England, reported that among 542 patients randomly assigned to receive either methotrexate alone or in combination with Enbrel, another biologic agent, those receiving the combination were almost twice as likely to become symptom free and more likely to show no X-ray signs of progressive joint destruction a year later.

In a commentary with the Lancet report, Dr. Joel M. Kremer, a rheumatologist at Albany Medical College, said it was important to consider the long-term consequences and costs of the disease when deciding how much to spend on therapy.

“Most of the biologic agents cost in the range of $16,000 to $18,000 a year, whereas the oral medications cost only about a tenth that,” Dr. Kremer said in an interview.

But, he added, inadequately treated rheumatoid arthritis typically leads to a need for multiple joint replacements, lost productivity, lost tax revenue and a greatly diminished quality of life, as well as an increased risk of life-threatening infections and cardiovascular disease.

“Most patients diagnosed at age 45 will be disabled in five or six years,” Dr. Kremer said. “You have to consider what it costs to fix a bridge against what it will cost when the bridge collapses.”

Before the use of disease-modifying drugs, direct medical costs from rheumatoid arthritis were estimated at $5.5 billion, and that did not include the indirect costs of lost wages and productivity, the need for custodial care and the emotional and social consequences of chronic disability.

A Tailored Approach

While not everyone with rheumatoid arthritis responds to the new treatments as vividly as Mr. Moore did, many large studies have shown there is no longer any reason for pessimism about the diagnosis. But it is vitally important to begin treatment early.

The recent therapeutic developments, Dr. Kremer said, mean doctors in general practice need to remain alert to symptoms of the disease in its early stages and quickly refer patients to rheumatologists who can confirm the diagnosis and prescribe up-to-date treatment before irreparable damage to joints occurs. Treatment is most effective if begun within one year after symptoms appear.

There is no one treatment approach that works for everyone. Rather, studies have indicated that treatment should be tailored to individual patients: the nature and extent of their disease, their other health issues and how they respond to various therapies.

Dr. Kremer said many patients could be started on a single, low-cost drug like methotrexate, as long as their condition was closely monitored and the treatment adjusted if there are signs of progressive disease.

Regular exercise and physical and occupational therapy, along with medication, can help patients maintain function. In addition to antirheumatic drugs to reduce inflammation, Dr. Kremer recommends fish oil at a daily dose of 2 grams of EPA and DHA — about six capsules as they are currently formulated.

Monday, August 11, 2008

"I used to be...."

On Saturday, I had a freelance gig and encountered another horn player whom I had not seen for quite awhile.

He had been absent from playing for five months this year due to a herniated disk in his cervical spine. I asked him all sorts of questions about what the herniated disk felt like, what treatments he underwent, and most importantly - did he need to have surgery?

It was amazing to hear how long it actually took for his HMO to bump-up his treatment regimen. Three long months before something stronger than Ibuprofen was recommended for the excruciating pain. Ouch!! Eventually he was given steroids and narcotics before being sent to consult with a spinal surgeon.

“Prednisone is nasty stuff,” he says.

“I agree!! Any time I’ve had to use steroids, I curse them and thank them at the same time.”

Our conversation eventually came around to - “I have Multiple Sclerosis.”

“I didn’t know that. I’m so sorry,” he says. “Did you know that ‘GS’ has MS?”

“What? No way!! I haven’t seen her in forever.”

“Yeah. She was the top freelancer in town before it just became too difficult. Eight or nine years ago she was struggling so much that she simply stopped playing.”

Damn. Another USED TO BE...

One morning after I was officially diagnosed, a woman at the swimming pool introduced herself to me. She has MS too.

“I used to be a cellist, but I can’t control my left hand any longer.”

A friend of mine who is a school teacher told me...

“I used to perform much more, but now I don’t have the endurance.”

When thinking of famous people with Multiple Sclerosis, I am drawn to Jacqueline du Pre, the extraordinary cellist whose career was cut short by MS.

Read More..

As for me, I used to be much more shy, reserved, and private. MS has taken that from me, for which I am truly thankful.

Friday, August 8, 2008

It's Gonna Be a Great Day

Sometimes when I wake up in the morning and the sun is shining brightly through my white curtains, I just know that it’s going to be a great day.

I stretch long in the bed, rotate my legs left and right, reach high in the air towards the ceiling, give out a lion yawn, relax....

Then I start to get up out of bed. Whoops!

That first step is wobbly and stiff. I reach for the footboard on the bed. Take a few more steps.

Ok. Getting the flow now.

First, I must negotiate the items collecting dust and cat fur in the hallway on the way to the bathroom. Then, I.....

Yep, you heard me right. I'll be blogging next to our friend Mandy of MS Maze who has been a prominent feature at Health Central since last fall.

So please do come over and let me know you've arrived. I am not giving up my blog here but will be adding twice a week posts at in addition to all the cool stuff that Brass and Ivory and the Carnival of MS Bloggers have to offer.

Thursday, August 7, 2008

Health Wonk Review is Up!! and Questcor's CFO is Resigning

Bob Laszewski hosts this week's Health Wonk Review at the Health Care Policy and Marketplace Review.

Bob highlights my posts regarding Questcor's 1410% increase in the price of H.P. Acthar Gel and the Senate Joint Economic Committee hearing which I attended on July 24, 2008.

In a related note, on July 31, 2008 (only 7 days following the JEC hearing and the release of 2nd quarter earnings, and 4 quarters of reported earnings since the "new strategy" was implemented), CFO George Stuart enters into a transition agreement with Questcor.  Basically, he is leaving.  

A reason given for his desire to seek other employment is that Stuart has been commuting from Southern California (San Diego) to Northern California (Union City which is 20 miles north of San Jose Airport) for the past three years.  American has 32 and Southwest has 65 non-stop flights from San Jose to San Diego.  Both airlines offer round-trip fares of $120 (including taxes), even with the recent increased cost of flying, for the 85-minute flight.

As a reminder, George Stuart was the first Questcor insider to sell a substantial amount of stock after the run-up last fall.  He was also the luckiest one in that he managed to sell at the high of $6.00, the highest stock price of any insider selling before or since.

Pursuant to the transition agreement, Stuart has agreed to continue working in his current capacity until Questcor hires a new Chief Financial Officer (or until December 31, 2008) and for six months thereafter as a part-time employee (working from home) to assist with the transition.  During the six month transition period, Stuart will receive continued compensation of $17,333.33 per month, continuation of benefits and continued stock option vesting. The agreement also provides for severance payout at the end of Stuart's part-time employment in the amount of $26,000 plus $20,000 for each month remaining on his six (6) month term of part-time employment at the end of such employment. 

So that's a $104,000 part-time salary plus benefits for working from home for six months, or if he's not needed to work part-time during those six months, it's $120,000 plus benefits.  Both scenarios end with an extra $26,000.  But Stuart will not receive a cash bonus for 2008 which would have been 45% of his $260,000 salary (=$117,000).  Thus the possibility of $120,000 while not working seems pretty close to that forfeited bonus.

As a final note, I should mention that George Stuart is/was the final employee remaining (I believe) who was brought to Questcor by the previous CEO James Fares in 2005.  I find it interesting that last year Fares announced his departure one week after Questcor announced they had received a "non-approval" letter from the FDA for the addition of Infantile Spasm to the label for H.P. Acthar Gel.  And now a transition plan has been arranged between George Stuart and Questcor only one week after their financial case was discussed at a Senate JEC hearing.


Union City, CA – August 5, 2008 — Questcor Pharmaceuticals, Inc. (NASDAQ: QCOR), announced today that George Stuart will be transitioning from his position as Questcor’s Senior Vice President of Finance and Chief Financial Officer once a successor joins the Company. For the past three years, Mr. Stuart has been commuting from Southern California to the Company’s headquarters in Northern California, and it is his desire to remain closer to home. Mr. Stuart, 45, joined Questcor in 2005.

“I deeply appreciate George’s willingness to remain with our company until his successor comes on board, as well as to continue on a part-time basis for six months thereafter to ensure a smooth transition,” said Don M. Bailey, President and Chief Executive Officer of Questcor. 

“George has made many contributions to Questcor and played a key role in supporting the rapid turnaround and growth of the Company. We appreciate George’s efforts in the transition process, and wish him the best as he pursues other interests.”

“The entire Questcor team has been extremely supportive of my decision to seek new career opportunities closer to my home and family in San Diego,” said Mr. Stuart. “I look forward to working with Don and my successor during the transition process and remain very excited about the future and potential of Questcor.”
Strange coincidence indeed.

Wednesday, August 6, 2008

Paris approved this message

I have to admit that these TV ads/campaign ads are annoying. Fear-mongering with a sweet voice over.

Seriously. Why show more images of your opponent rather than sharing the reasons why you support the ideas you do?

Why not design an ad which explains that those in your political party (and the current admin) believe that birth control is tantamount to abortion? Somehow I think have the lining of your uterus dredged is a bit more significant than taking a hormone pill which affects ovulation or prevents an egg from implanting in that uterine lining. But then again, you don't have a uterus. My bad.

So here's the John McCain ad....

To which, Paris Hilton presents this response....

And here's a Huffington Post report found on Yahoo News...

Hilt-Owned -- Paris Responds to McCain's Ad

Seth Grahame-Smith
Tue Aug 5, 11:12 PM ET

Love her or hate her, you've gotta hand it to Paris Hilton

She just made John McCain her bitch.

In less than two minutes, she accomplished not one -- but FIVE things McCain himself has been unable to do in two years of campaigning:

1) Come off as intelligent and self-effacing.

2) Present a well-reasoned energy policy.

3) Generate excitement on the internet.

4) Win over a new block of supporters.

5) Say the word "Hilton" without the preface "Hanoi."

Yeah, I know -- it's just a funny little video. But no matter what the flacks say, I promise you they aren't laughing over at Camp McCain. Because as you read this, that funny little video is spreading faster than a case of Cancun herpes...and it's only Tuesday.

Team McCain can expect to be thrown off message (assuming they have one beyond "Yay, motorcycles! Yay, race cars!") tomorrow as the MSM picks this up and plays it to death. They know their candidate will be asked to respond, and that he has no choice but pretend he finds the whole thing amusing, or paraphrase Tucker Bound's envious, childish response: "Paris Hilton might not be as big a celebrity as Barack Obama, but she obviously has a better energy plan."

Either way, he looks ridiculous, because he's engaging in a dialogue with...Paris Hilton. Expect the "celebrity" backlash to continue all week (the last before we tune out and watch the Olympics).

Who knows? Maybe the media will also remember that for all his "celebrity" talk, John McCain's the guy who made cameos in movies like Wedding Crashers and TV shows like 24 -- and whose daughter, Meghan, is like, totally bff's with Heidi Montag from The Hills. (But let's face it...they probably won't).

Here's to you, Paris. You may be famous, but unlike some people -- you aren't ashamed to admit it.

And that's hot.

Seth Grahame-Smith is the author of Pardon My President: Ready-to-Mail Apologies for 8 Years of George W. Bush.

And here's more in The New York Times Politics Blog, today...
The Caucus: The Next Round of the TV Ad Wars…

By Michael Falcone
Published: August 6, 2008

The McCain campaign has released its latest television ad, which once again calls Senator Barack Obama “the biggest celebrity in the world.” Today’s ad, however, also asserts that Mr. Obama’s policies would hurt the American family.

I'z Sleepy

I'm sitting here with my new laptop (yes, everybody should clap and applaud - it only took forever to curse the other one enough times to go shopping).

So I'm sitting here trying to catch up on all my favorite blogs. And I can't keep my eyes open.

I make it about one sentence, then I think I'm reading but that's just the sound of my voice in my head talking. What it's talking about, I don't really know. But it thinks it's still reading, yet my eyes are closed.

I had plans for real blog material today. But I'm going to have to put it off.

Going to give in to the nap spirits. I'll come back later.


Tuesday, August 5, 2008

Electronic Health Records Really Could Be Used Against You

Ok. Set aside the fact that I have multiple sclerosis and rheumatoid arthritis for just a moment and imagine this scenario.

I apply for a new health insurance policy and I've been fairly healthy, nothing major I think. The insurance company saves time and money and checks my "health credit report" which determines my 'risk' to the insurer rather than gathering medical records from physician offices.

Since the credit report is drawn from prescription records, perhaps the fact that I've used Valtrex indicates a higher risk. Valtrex is a drug used by patients who have genital herpes. But it can also be used by patients who develop shingles. Can you tell me which of these is a chronic illness and which is not? To a computer it hardly matters.

So based on my "health credit score" insurance could be denied or assessed at a very high premium level.  But the good news is that the decision was made in on the spot.

What's not to love about that?

Yesterday Carole highlighted an article in The Washington Post.

Premium Info: Prescription Data & Health Coverage
Records Aid Insurers but Prompt Privacy Concerns

by Ellen Nakashima
Monday, August 4, 2008
Health and life insurance companies have access to a powerful new tool for evaluating whether to cover individual consumers: a health "credit report" drawn from databases containing prescription drug records on more than 200 million Americans.

Collecting and analyzing personal health information in commercial databases is a fledgling industry, but one poised to take off as the nation enters the age of electronic medical records. While lawmakers debate how best to oversee the shift to computerized records, some insurers have already begun testing systems that tap into not only prescription drug information, but also data about patients held by clinical and pathological laboratories.

Traditionally, insurance companies have judged an applicant's risk by gathering medical records from physicians' offices. But the new tools offer the advantage of being "electronic, fast and cheap," said Mark Franzen, managing director of Milliman IntelliScript, which provides consumers' personal drug profiles to insurers.

The trend holds promise for improved health care and cost savings, but privacy and consumer advocates fear it is taking place largely outside the scrutiny of federal health regulators and lawmakers.

Ingenix, a Minnesota-based health information services company that had $1.3 billion in sales last year -- and Wisconsin-based rival Milliman -- say the drug profiles are an accurate, less expensive alternative to seeking physician records, which can take months and hundreds of dollars to obtain. They note that consumers authorize the data release and that the services can save insurance companies millions of dollars and benefit consumers anxious for a decision.

"Some insurers can make a decision in the same day, or right on the spot," Franzen said. "That's the real 'value-add.' "

But the practice also illustrates how electronic data gathered for one purpose can be used and marketed for another -- often without consumers' knowledge, privacy advocates say. And they argue that although consumers sign consent forms, they effectively have to authorize the data release if they want insurance.

"As health care moves into the digital age, there are more and more companies holding vast amounts of patients' health information," said Joy Pritts, research professor at Georgetown University's Health Policy Institute. "Most people don't even know these organizations exist. Unfortunately the federal health privacy rule does not cover many of them. . . . The lack of transparency with how all of this works is disturbing."
(Note: I do not know if Valtrex specifically would increase one's "health credit score". I am simply hypothesizing.)