Wednesday, December 31, 2008

Brass and Ivory 2008 - The Blog In Review

Lots of things have happened this year

  1. PhRMA discusses Pharmaceutical Samples and wants to be 'Sharing Miracles' but misses the boat (imo)
  2. When the topic of drug costs comes up I ponder - The Value of Money or the Value of Health - What do you see?
  1. My 19-year old feline companion, Joshua, dies and leaves a hole in my heart.
  2. Next we discuss Fear and Anxiety - What are your dreams?
  3. Take notice of stealth marketing in PR for MS - Ogilvy and Betaseron
  1. Following a most stressful few months, I Join the MS Party (ie. Relapse)
  2. Random Thoughts - How a few simple words and break down walls
  3. When will we have the option of generic MS self-injectable drugs?
  1. The lucky ones with 'good' insurance just may become unlucky
  2. Time to go Surfing the Magnetic Tube
  3. MRI results comes in - Sometimes "Going with the Flow" is not so easy
  1. The Carnival of MS Bloggers #10 presents a Top Ten List for every MSer
  2. I begin to tell MY MS STORY with Eyes in the Back of My Head
  3. Continue story with A Pain in My Neck and Tears on My Pillow
  1. We should often ask ourselves - Who do you Trust?
  2. What do you know about 4-AP, Fampridine-SR, and Multiple Sclerosis
  3. Introducing The Bioentrepreneur and Fampridine
  1. Pharma wants you to walk faster and easier for $10,000
  2. Small patient populations - Big drug prices
  3. Price Gouging in extremely vulnerable and captive market
  1. It's Gonna Be a Great Day as I got hired by The Health Central Network
  2. Repeat After Me - "This too shall pass"
  3. We learn about the National MS Disease Registry Act
  1. More of MY MS STORY - How am I going to pay for this?
  2. Paging Dr. Google, or, Consulting With the Homies
  1. I plan to be Talking to the Big Guys
  2. Psychiatric Help 5 cents - The Doctor Is In and the Mental Health Parity Act
  1. Interviewed for MS Momentum - Ensure your Insurance? Crazy MS!!
  2. The Epstein-Barr Virus and and the MS Immune System
  1. Can't decide where to inject? read Needle Nostalgia - Copaxone and Me
  2. Losing heat in the house - Don't know if I should laugh or cry
  3. Peace To You All and a Happy New Year!!
Thank you for continuing to read Brass and Ivory. I'm appreciative of your patronage, friendship, and support. Here's to 2009!!

Monday, December 29, 2008

Carnival of MS Bloggers - Submissions, Please

New Year, New Resolutions, New Hopes and Dreams

The next Carnival of MS Bloggers is planned for New Year's Day, 2009.

Please submit your posts via email. or you will force me
to 'swipe' and feature unsuspecting MS bloggers.

Look forward to seeing what you share.

Thank you.

Wednesday, December 24, 2008

Silent Night by the original Straight No Chaser

Hope you enjoy this taste of Straight No Chaser, a men's acapella group formed at Indiana University in 1996. After a few old videos went viral last Christmas season, these guys have reunited, recorded a new album, and are on the touring circuit.

The video quality may be homemade, but the sound is golden. Enjoy.

Merry Christmas and Happy New Year!!

As a special bonus-----click here-----for the most awesomest recording of

The 12 Days of Christmas!!!

(turn your speaker on first)

Monday, December 22, 2008

Post Winter Solstice and Free Falling

Has anybody noticed that today was longer than yesterday?

I'm looking forward to more sunlight and longer days. The winter blues suck.

On a different note, anybody remember the Tom Petty song which went....

'Cuz I'm free!!! Free falling.... Yeah I'm freeeeeee.... freeeee falling!

Well, if that makes you curious, then you ought to read my latest post over at The Health Central Network.

I may not announce each time a new post is up, but I do appreciate your comments and support none the less.

In fact, after some unsavory bullying received by some "probable MS" folks on another site (yes, Linda, I know I shouldn't have gone back there. I should just stay here where my bloggy friends like me and appreciate the research I find), I really need your humor and kind words.

And, if you detected a bit of sadness, you're absolutely correct.

Saturday, December 20, 2008

2008 Medical Weblog Awards - Best Patient Blog

The 2008 Medical Weblog Awards Sponsored by Epocrates are open for NOMINATIONS!!

The 2008 Medical Blog Awards

Brass and Ivory has been nominated. However, it takes more than one nomination to make it to the "finals" for voting. So far the following folks have kindly put Brass and Ivory's name in the hat.

Doc - Mind, Soul, and Body
Nina - Planning for the Unpredictable
Karla -
Ivy - Life with MS & EDS
Jen - MS Strength
Connie -

I appreciate your kind support and encouragement. Makes me smile. :)

In any case, head on over here to nominate your favorites. The more voices the better.

Friday, December 19, 2008

WSJ reports - Elan CEO Defends Tysabri Sales, Citing 'Good Progress'

Elan CEO Defends Tysabri Sales, Citing ‘Good Progress’

By Jeanne Whalen
December 19, 2008 @ 3:06 pm

Elan is looking forward to the end of 2008. A slew of disappointments have grounded the biotech company’s once high-flying shares; they’ve fallen more than 70% this year.

Shareholders are grumbling, including one big one who is so fed up that he’s called for the ouster of CEO Kelly Martin.

As a snowstorm hit Health Blog HQ today, Martin braved the weather to come by, defend his record and talk about how he’s trying to turn things around.

First, Tysabri, the multiple sclerosis treatment Elan sells with Biogen Idec. The drug will have sales of nearly $1 billion this year. Sounds great, right? Blockbusters are hard to come by these days. But some shareholders think sales should be a lot brisker, given Tysabri’s efficacy advantage over other drugs.

Female MS Patient in the US dies from PML after 14 months on Tysabri.

I return from Christmas shopping and find this news bit (from Bloomberg Health New). My heart goes out to this patient's family.

If I remember correctly, this woman began experiencing symptoms of PML in September (information based on a comment left on Kim Fabrizio's blog).

Biogen, Elan Shares Fall After U.S. Tysabri Patient’s Death

By Elizabeth Lopatto

Dec. 19 (Bloomberg) -- Shares of Biogen Idec Inc. and Elan Corp. fell after Biogen said a multiple sclerosis patient who developed a severe brain infection after taking the drug Tysabri has died.

Biogen declined $1.26, or 2.6 percent, to $46.75 at 4 p.m. in Nasdaq Stock Market composite trading. Elan fell 35 cents, or 7.9 percent, to close at 4.10 euros in Dublin trading.

Cambridge, Massachusetts-based Biogen was informed of the American woman’s death two days ago, company spokeswoman Naomi Aoki said in an interview. The company reported on Oct. 29 that the patient had been diagnosed with the brain illness, progressive multifocal leukoencephalopathy. The death is the first among four cases of the brain illness reported since Tysabri was reintroduced in the U.S. in 2006.

“Given the expected negative attention that this death will attract in the medical literature and media, we believe there is increased risk to owning shares of both Biogen and Elan,” wrote Christopher James, an analyst for Rodman and Renshaw, in a note to investors.

Tysabri generated $597 million in sales in the first nine months of the year. It is Biogen’s second-best-selling medicine after the MS drug Avonex. Biogen and its marketing partner, Irish drugmaker Elan, pulled Tysabri from the market in February 2005 after three patients, two of whom died, contracted PML.

The patient had received 14 Tysabri infusions before becoming ill, Biogen reported in a regulatory filing in October. Aoki declined to comment on the type of treatment for PML the patient received.

Since Tysabri’s reintroduction, three European patients have contracted PML. Biogen and Elan reported one case on Dec. 15 and two others on July 31.

48,000 Patients

More than 48,000 patients have taken Tysabri, Biogen told investors on Oct. 21, when the company released its earnings. Chief Executive Officer James Mullen said 100,000 patients will be taking the drug by 2010.

PML is included in Tysabri’s prescribing information as a possible side effect in 1 of every 1,000 patients taking the drug. The condition occurs when the JC virus, named with initials for the first patient diagnosed with it, evades the body’s immune defenses and penetrates the brain, causing irreversible damage.

The U.S. Food and Drug Administration approved Tysabri’s return to the market in June 2006 because research showed the treatment is twice as effective as other MS drugs. At the same time, the agency mandated strict measures to monitor side effects.

Neurological Disorder

MS is a neurological disorder that robs people of muscle control and balance, sometimes leading to damaged vision and paralysis. The disease, which affects about 2.5 million people worldwide, is caused when the body’s immune system attacks the protective coating of nerve fibers.

Tysabri, given intravenously once a month, is designed to suppress the immune assault and is one of five immune-suppressing therapies that are known to cause PML. The others are Roche Holding AG’s CellCept, Biogen and Genentech Inc.’s Rituxan, Genzyme Corp.’s Campath and Genentech’s Raptiva.

To contact the reporter on this story: Elizabeth Lopatto in New York at

Last Updated: December 19, 2008 16:21 EST

Another version of the same story:

Biogen says Tysabri PML patient dies in U.S.

Fri Dec 19, 2008 4:52pm EST
By Toni Clarke

BOSTON (Reuters) - Biogen Idec Inc said on Friday that a multiple sclerosis patient who had been diagnosed with a rare brain infection while taking its drug Tysabri has died, sending the company's shares down nearly 3 percent.

Biogen and its partner Elan Corp Plc disclosed the case in October. Naomi Aoki, a spokeswoman for Biogen, said the company learned of the patient's death earlier this week.

Tysabri is seen as crucial to the growth of both companies. The drug was temporarily withdrawn from the market in 2005 after it was linked with a rare brain infection known as progressive multifocal leukoencephalopathy, or PML.

The drug was reintroduced in July 2006 with stricter safety warnings.

So far, there have been four new cases of PML, an infection rate that is still less than the one in 1,000 warned of in the drug's label. Nearly 18,000 patients have received at least a year of Tysabri. But investors are watching to see if the rate increases, and they are also looking at how successfully patients can recover.

"While we continue to believe the benefit/risk profile of Tysabri as favorable, we believe this death could lead the FDA and physicians to alter how future PML cases are managed," said Christopher James, an analyst at Rodman & Renshaw.

The patient who died was a United States patient who had received 14 monthly infusions of Tysabri as a stand-alone treatment. Previously she had received other therapies.

After developing the brain infection, the patient was treated with a procedure known as plasmapheresis, in which blood is removed, cleared of the drug, and replaced.

While the U.S. patient died, two patients who developed PML in Europe, and whose cases were announced in July, appear to be recovering following treatment, even though one had not been expected to survive. Earlier this month, Biogen announced that a fourth patient had developed PML. This patient, in Europe, is still alive.

The European patient that had not been expected to survive had developed a condition known as immune reconstitution inflammatory syndrome, or IRIS. This occurs when the immune system, in eliminating an infection, produces an excessive inflammatory response that can worsen symptoms.

The patient was treated with corticosteroids.

Geoff Meacham, an analyst at J.P. Morgan, said it seems likely the U.S. patient, having gone through plasmapheresis, died of IRIS, and that since the European patient recovered, it might be possible to manage IRIS using steroids and close monitoring. Biogen declined to confirm this theory, citing patient privacy.

"In our view, the rate of PML is now critical to assessing the launch trajectory, and the regulatory outlook, should it stay in the 1/1000 range," Meacham said in a research note.

© Thomson Reuters 2008. All rights reserved.

Wednesday, December 17, 2008

MS and Sleep Disturbances - Interviews Sought

Hi bloggers friends!!

I received the following email last week from Heather Boerner, the writer who interviewed and quoted me in the Winter '08-'09 Momentum Magazine. Her friend is writing a piece on MS and sleep disturbances (not MS fatigue-related).

My experience with Heather was positive. If you are interviewed and quoted, I'd love to hear about it. Thanks, Lisa

Hi all,

I'm sending this to you because you've been great sources for me before for stories I've written for Momentum magazine on MS. Now I'm coming to you on behalf of a writer friend who is doing a story on MS and sleep problems. I think she means something other than the fatigue that's so abundant in MS.

Here's what she's looking for: Someone with MS under the age of 60 who has sleep disturbances. She has lots of experts, but obviously wants to get in touch with people who can speak about the issue from personal experience.

If you are this person, or know someone who might be, please contact her directly at Feel free to tell her I sent you.

I hope you are pain-free today and doing well. Please know I'm thinking of you.


Tuesday, December 16, 2008

The MS Community Keeps Growing and Growing - Welcome our New Friends

Meet Katherine, newly diagnosed in July 2008, whose blog is Indicating an Intrathecal Production.

I’m a professional graphic designer with a partner of seven years who is beyond supportive, and the most incredible family and friends anyone could hope for — my best friend since we were just five is now a clinical study coordinator for autoimmune research. I have been humbled by the amount of love I realize is — and has been — a part of my life.

Another great new blog is In It For the Parking written by Rae...

I named it “In It For The Parking” because that’s my attitude towards chronic illness. It’s a part of my life… not my entire life, and I choose to take notice of the silver lining around the cloud as often as possible.

Proud mommy to two new Beagle puppies, meet Kerri who blogs at LATTE' BUDDIES! She's an Air Force wife (retired), elementary school teacher, and a first-year empty nester. Kerri doesn't blog about her MS much, yet, but assures me that she does plan to in the future.

Robert has started a new blog called Conquer Multiple Sclerosis.

I have no idea what Multiple Sclerosis has in store for me next, but I now look into the future with unbridled optimism and a knowledge that I will be alright. I take each day for what it is and make the most of it. Like me, you can make a difference in your own life and in the lives of others. We did not ask to have multiple sclerosis, none of us did, but we can definitely use it to help others in the end.

Life in the Slow Lane who shares.....

I unwillingly had to accept that my body is now eating my brain. I have lived in oblivion for most of the year knowing that this disease had affected my cervical spine. I would always brag that my brain scans were clear. Then bam. "You have some small spots." That is not what I wanted to hear. No, no, no.

And finally, please welcome Linda whose blog ms4tune is only days old. Linda says....

Welcome to my blog! I am an African American mother who was diagnosed with Multiple Sclerosis in 2005. Married with two children, I often am asked about my diagnosis by many other people of all races. Because I am also a member of the Soka Gakkai International (SGI -, I am often asked how my buddhist pratice equips me to deal successfully with this auto-immune disease. One thing that my practice has helped me learn is that there is always both a positive and negative way to react to every experience. That is why my blog is titled “misfortune” because along with the physical challenges I experience every day, MS has brought me a boatload of wonderful experiences and realizations. I hope to share some of those with you in future posts - not to brag about myself, but to help you (and me!) remember that all is not lost, and that even with this type of health challenge there is always a great deal for which to be thankful.

Welcome to the MS Blogging Community!!

Monday, December 15, 2008

Tysabri in the News AGAIN!! Is the fear machine working overtime?

Thomson Financial News

UPDATE 2-Biogen says new brain infection linked to Tysabri
12.15.08, 12:51 PM EST
By Ransdell Pierson

NEW YORK, Dec 15 (Reuters) - Biogen Idec Inc (nasdaq: BIIB) said on Monday it notified regulators of a new case of a potentially deadly brain disease in a patient being treated with its Tysabri multiple sclerosis drug, the fourth such case reported globally this year.

The latest case of the brain infection, known as progressive multifocal leukoencephalopathy (PML), was seen in a European patient who had been taking Tysabri as a stand-alone treatment for 26 months, Biogen said in a regulatory filing.

'The patient is under physician's care,' company spokeswoman Shannon Altimari said, noting it was too soon to speculate on the prognosis for the patient.

Biogen shares were off 1.3 percent in midday trading, while the stock of its marketing partner, Elan Corp (nyse: ELN) of Ireland, fell 4.2 percent on the New York Stock Exchange.

Shares of Biogen and Elan fell sharply after the drugmakers disclosed on Oct. 29 that a case of PML had been seen in a U.S. patient. In July, the companies reported two cases had emerged in Europe.

This year's four cases of affected patients, all still alive, are the first to be announced since Tysabri was withdrawn from the market in 2005 after three earlier patients developed the brain infection. Two of the earlier three patients died.

Asked why no cases were seen in 2006 or 2007, Biogen spokeswoman Naomi Aoki on Monday said, 'The drug had been taken off the market for a little over a year, and returned in July 2006.'

She said Biogen and Elan believe the superior effectiveness of Tysabri in preventing relapses of multiple sclerosis symptoms justifies its use, despite the relatively low risk of PML.


Aoki said more than 35,500 patients worldwide are taking Tysabri, and that the drug in clinical trials was able to produce a 68 percent reduction in relapses.

Rival drugs, by contrast, are able to reduce relapses by only about a third, she said.

Tysabri's package insert label cautions that patients taking the drug have a 1-in-1,000 risk of developing PML, but the overall incidence of the brain infections seen so far is 'still well within' that magnitude, JP Morgan analyst Geoffrey Meacham said in a research note.

'Overall, we would characterize this new case as completely in line with expectations at this point,' Meacham said, noting that the infrequent occurrence of PML suggests there is little risk Tysabri will again be pulled from the market.

Third-quarter sales of Tysabri rose 18 percent to $171 million, a slowdown from the 25 percent growth seen in the second quarter. Biogen said growth was tempered as doctors continue to assess the drug's risks versus its benefits.

Even so, Biogen in October reaffirmed it expects 100,000 patients to be taking Tysabri by 2010, a near tripling of the current patient roster. The company on Monday said its ambitious goal remains in place.

Multiple sclerosis, a so-called autoimmune condition that can cause progressive paralysis of limbs, occurs when an overactive immune system attacks the protective myelin sheath around nerves.

Autoimmune drugs work by taming the immune system, but in doing so some of them can leave the body prey to infections that rarely affect the general population.

Aoki said a handful of other drugs, including Biogen's own Rituxan treatment for cancer, carry warnings of increased risk for PML.

Copyright Thomson Reuters 2008. All rights reserved.

Marshmallow Fight!!!!!

Sunday, December 14, 2008

Biosimilar Drugs and NOT the same as Biogeneric Drugs

For a little history on the topic of biogeneric drugs, read the following Brass and Ivory articles:

When Will We Have the Option of Generic MS Self-Injectable Drugs? (March 25, 2008)

Generic Biotech Drugs -- The House Energy and Commerce Committee meeting to consider establishing a Regulatory Pathway for Follow-On Biologic Drugs (October 24, 2007)

Today, Gooz News published the following article which addresses a significant difference which proposed legislation will have on patients using expensive biological drugs, such as the MS disease-modifying drugs.

Biogenerics, Not Just Biosimilars

The debate over a regulatory pathway for biotechnology generic drugs is shaping up and it doesn’t look good for cost-conscious patients or anyone pulling their hair out over rising health care costs.

Last week, both Merck and Eli Lilly announced plans to expand their biotechnology divisions. While they are taking aim at proteins already on the market, both companies told the press that their new biotech drugs would not be generics in the traditional sense. They will be slightly modified versions of existing drugs that will be run through the full panoply of clinical effectiveness testing and sold at prices much closer to the original drug.

In essence, both companies are banking that the “biosimilar” legislation that now seems destined to pass Congress next year will bring into existence a biotechnology me-too industry. That’s very different than a true generic industry, which was created by the Hatch-Waxman Act of 1984 for traditional drugs.

Unlike true generics, which are exactly like the original drug, me-too drugs contain slight modifications that qualify for their own patent protection. Their clinical usefulness may be no different or only slightly improved from the original. But, because they have been put through their own clinical trials and have patent protection, they can be marketed to physicians as unique products and priced accordingly.

The results are often of marginal benefit to patients, consumers and health care plans. Me-toos are usually priced within 10 to 20 percent of the original drug’s price, and sometimes cost more if they have marketable benefits like less frequent dosing. True generics, on the other hand, usually cost less than half of the original molecule because multiple firms jump into the fray and there is no direct-to-consumer or direct-to-physician marketing to inflate costs.

Read the remainder of the article at Gooz News which ends with this:

Clearly, it’s going to take a lot of consumer and payer pressure to get legislation that offers fast and meaningful economic relief from the high cost of biotech drugs when their patents expire. Changes in patent law to enable a me-too biosimilar industry isn't even half a loaf. What the public needs is a pathway to biogenerics that doesn't require costly, duplicative clinical trials.

I've not been keeping up with recent developments, but it's time to get back into following pharma and congress.

Saturday, December 13, 2008

Update on the Homestead

Just want to leave a quick note.

As of 6pm last night, we have HEAT in the house which doesn't have to come from several blocks of wood. What a blessing this truly is!!!!

Friday, December 12, 2008

Carnival of MS Bloggers #25

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Things May Be More Than They Appear

Shauna shares
"My Zebra"

At the age of 34 I had a relatively unremarkable medical history. Typical childhood diseases, mono as a teenager in university, normal checkups at my yearly physicals. So when I went to my doctor in January of '98 with gradual weakening on my right side, I figured I had a pinched nerve in my neck and told my doc that. She conducted a neuro exam and said she wanted me to see a neurologist. She'd get back to me, but if it got worse, I was to come see her again. In the meantime she sent me for an x-ray of my neck, as a pinched nerved or something out of sorts in my neck was still a possibility.

I had the x-ray the next day but the day after that I was worse. Back to the doc I went and she sent me straight to the hospital where I was diagnosed with probable MS at the end of the day. Time from onset of symptoms to diagnosis was 6 days.

My mother is politically active, behind the scenes. So over the years people have commented to her that I probably got my quick diagnosis because of her connections. She denied it, as she had nothing to do with it, and explains that I was very lucky.

I didn't have a thick medical file to begin with, no other major or chronic illnesses, no exposure to dangerous chemicals or the like at my job, and I had an excellent rapport with my doctor. I went to see her once a year for my physical and that was pretty much it.

A couple of years ago, I was facilitating a talk given by one of the neurologists about treatments of MS. One of the questions from the audience was "Why does it take so long for some people to get a diagnosis?"

In a nutshell, a few things are at work. First, presentation. We all know (or we should know) that each individual symptom in and of itself could indicate any number of things wrong. Vertigo? Inner ear infection. Tingling in your arm? You slept on it funny or it's a pinched nerve.

Second, our medical history may have nothing in it to indicate a predisposition to neurological events. No one in my family had MS.

Third, our medical history may be jam-packed with other chronic illnesses such as allergies, cancer, chronic infections, diabetes. Other illnesses are likely to be investigated first, before MS, as you have a history of them. Doctors are taught that "when you hear hoof beats, look for the horse, not the zebra." MS is a zebra. I had only horses in my medical history.

Fourth, cost and eliminating the obvious. Working up a lab for an inner ear infection is going to cost a lot less than an MRI for a tumour or MS. If the lab comes up negative, ear infection can be eliminated from the list of differentials.

Fifth, our own ignorance. How many times, pre-MS, have we attributed our symptoms to other benign illnesses? If we have a couple of days of vertigo we think we must have a flu or inner ear infection and it goes away. Tingling in our arm? We slept on it funny and after a couple of days it goes away. And those symptoms may have been days, weeks, or even months or years apart. So do we associate one with the other? Nope. It's not until reflection after diagnosis that we can recall symptoms that may have been indicators of MS. I recalled being at the movies a few months before my diagnosis and experiencing tingling in the fingertips of my right hand. That symptom lasted a couple of days, then went away, forgotten until two years after my diagnosis when I was thinking about any possible symptoms I had long before my diagnosis.

A study was released this week that indicated that people who were obese, smoked, or had other physical or mental health conditions took one to 10 years longer to be diagnosed with MS than those without those conditions. The more medical problems someone with MS had, the more severe the disease became by the time they were diagnosed.

The results of the study are not surprising. What is interesting, though, is the level of disability reached for those whose diagnosis was delayed. One could hypothesize that early diagnosis and early treatment might delay disability, which is the point of the disease modifying drugs.

The lessons to be learned from all this info? Take responsibility for your own health care. That means eat right, sleep right, and exercise; take care of your body, know your body. Learn what you can about any other conditions you may have. Develop a good relationship with your doctor.

Once you are diagnosed with MS, you still have continued responsibility for your own health care. Not all symptoms are MS related. We still get the flu, cancer, arthritis, or Parkinson's. Just because you are the proud owner of a zebra, there's still the potential for a herd of horses to be hanging around.

Lots of blogs out there include comments about how isolating life can/does become when so much attention has to be given over to the body basics so much of the time and how it is often difficult for others to grasp the full impact of what is going on. In light of these challenges a couple of links about Living Libraries might be of interest to others.

For those that have not heard of a Living Library, a Living Library has Living Books. A Living Book is a person, that has chosen to be a public representative of a certain group. An example of how people can be, if only minds are open long enough to find out, who and what they really are. But before anything else, they are courageous people that stand by their convictions and are willing to discuss their values with others.

Maybe people have one in their area or like the idea of starting one in their area?

Singer Melinda Schneider has written a song called 'Be Yourself' which was inspired after seeing a program about one of the Living Libraries on a talk program by a well known Australian interviewer Andrew Denton.

Here's a snip from the interview (full transcript) where she talks about the trigger for the song:

ANDREW DENTON: Melinda I want to show you a clip from ENOUGH ROPE of a transvestite called Sarah who inspired you to write the song you're going to perform at the end of the show called Be Yourself.

MELINDA SCHNEIDER: I just loved the story of the living library.


MELINDA SCHNEIDER: And his or her story was a fascinating one. Yeah I just I loved the acceptance of his wife when she you know when he told her that he was a transvestite and he'd been hiding it from her and she said I don't care what you do, just don't lie to me and they stayed married and you know he was able to do what he wanted to do and you asked him you know if there was anyone out there going through what you went through what would you say to them and he said be yourself. Everybody else is taken.


MELINDA SCHNEIDER: And it hit me like a tonne of bricks because it was exactly what I was going through at that very time coming out of my divorce and getting back to my old self again and I just loved it.
The quote to 'Be yourself. Everybody else is taken' and the Living Libraries' active way of reducing prejudices and providing positive meaningful experiences struck a chord. Seemed like not a bad thing to share.

This concludes the 25th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on January 1, 2009. 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 Monday, December 29, 2008.

Thank you.
Comments for this post.

Thursday, December 11, 2008

And the Fire Blazes On.....

Time for an update in Smokey's Cafe... wait, I mean living room.

A very nice man from the special Boiler fixin' services came to the abode Tuesday afternoon to repair the more effective source of heating for the home.

Why was he so nice you ask? Well, it's because he used to play french horn of course. Even got to learn about the other members of his family who are musically inclined.

But actually, it's because after working on the system (draining water from system, removing broken part, installing broken part, refilling the system with water, and trying to make it work) for almost FOUR HOURS (no, he wasn't paid for the time, but for the job), he ever so humbly had to inform us that the circulation pump was not working.

Hey, I remember pondering that circulation issue...... So, yet another part needs to be ordered, but it shouldn't take a full week like this part had.

In the meantime, it's continuing to look a lot like Christmas.... as it's supposed to snow tomorrow.

Anybody got some Chestnuts? We could have Chestnuts roasting on an open fire...

Ha!! I'm too much, I know. LOL. By the way, if you are looking for the Carnival of MS Bloggers, come back tomorrow. It's late.

Also, I went to PT yesterday for our first real session. Who know that just standing and balancing was SO VERY, UNBELIEVABLY EXHAUSTING? I didn't, and I get to do it again tomorrow.

Tuesday, December 9, 2008

Reports of Suspected PML in Tysabri Use - Not Alarming

Ever wonder how investors view news articles and MS patients in general? Or how often do you consider that online conversations are being monitored?

Read - Suspected PML Cases for Biogen/Elan MS drug (Tysabri) Not Alarming

Sunday, December 7, 2008

Keepin' Cozy in the Casa

Through the old fashioned manner of heating by fire, we are able to get the living room a toasty 67 degrees when the fire is ablaze. Upstairs, it was a mild 50 degrees when I woke up this morning, and every morning for that matter so far.

Here's the lovely culprit:

Yesterday, the kittens were snuggled on the couch and I thought they might need some extra coverings. Surprisingly, they both stayed under this blanket for quite some time before ceasing to look like "a bug in a rug" times two.

Friday, December 5, 2008

Don't know if I should laugh or cry....

Remember Baby It's Cold Outside... Inside Too!!! ?

Here's a Recap and Update:

For awhile - The Boiler which heats the water that then circulates throughout the house's radiator system has been making thumping noises. We thought it was air in the radiators which had to be released. Wrong!!!

Tuesday night - The Boiler gave up the ghost. Oops, we thought it was a pump which pushed the hot water through the pipes because certain radiators were not getting any hot water/heat. Wrong again!!!

Wednesday morning - Called for delivery of a Cord of firewood to be delivered same morning. Very cool. For those who aren't familiar with what a Cord of word is, it is 128 cubic feet of wood, 8ft x 4ft x 4ft. That's A LOT of wood to burn in the wood stove (fireplace) in the livingroom of this old house.

Wednesday evening - Finally, a plumber who deals with Boiler/Radiant Heat came to assess the necessary repairs. Turns out that a part which controls filling the water tank and maintaining the required water levels had gone out. Very bad!!!

It is a part which must be ordered (rush please) and installed. Then we hope that while it was malfunctioning further damage was not done to more of the system. Yikes!

Thursday - A cold front is moving in and the firewood must be stacked in racks and off the driveway. Here's the before pictures with my Mom as size comparison:

It took us almost five hours to stack the wood. It was dark by the time we finished so no immediately after photos. Sorry.

Friday morning - I look out the window from upstairs and could almost cry (if I weren't so damn exhausted, and sore, and really walking funny, etc.). The ground was a little too soft for our liking and we had placed the feet of the rack on some bricks so that it would not sink and lean.

Ha! I guess the joke's on us. This rack which measured 8ft x 4ft fell over during the night and spilled half of our supply of wood. I'm really unhappy about this turn of events.

So here's some photos of our various stacks of wood. What didn't fit in one of these is located in the garage. Did I mention that I'm more than tired?

But the very small rack on the front porch still looks cute:

Thursday, December 4, 2008

Welcome Ivy and Chekoala to the MS Party

"Hey! I’m Ivy. I’m in my mid-30s and live in the Philly area with my two wonderful girls and my fantastic husband. Just about 5 months ago I was diagnosed with Ehlers-Danlos Syndrome (EDS) and just last week found out I have Multiple Sclerosis (MS). My mind has been overwhelmed with the news and hope that blogging will bring some clarity, allow some place to complain every now and again, and to have a place to track how things are going. Perhaps it will even help me connect with others dealing with similar challenges."

Shake & Spear by Chekoala

"I didn’t realise it but turns out an evil fairy godfather turned up uninvited to my baptism. Annoyed at being uninvited he muttered and cursed that I would grow up to be an MS princess. Luckily, my inner fairy gothmother has been around the block once or twice to come to the rescue."

Wednesday, December 3, 2008

Baby, It's Cold Outside... Inside Too!!

So last night, the boiler/radiator system in my house gave it up. It's been grumbling for awhile and I had thought, with some judicious bleeding of the pipes, that the monster could be appeased.

Well, I was incorrect and the pump which pushes the hot water through the miles of pipe in the house went KAAPUTTT!! So it's brrrrrrr in here, even after getting a fire going.

Baby, It's Cold Inside!!!

Tuesday, December 2, 2008

Clinical Trials for Multiple Sclerosis

Have you ever considered participating in a clinical trial? I have, yet... I haven’t. provides "patients, family members, health care professionals, and members of the public easy access to information on clinical trials for a wide range of diseases and conditions." The U.S. National Institutes of Health (NIH), through its National Library of Medicine (NLM), developed the site in collaboration with all NIH Institutes and the Food and Drug Administration (FDA).

Click here to search for Multiple Sclerosis clinical trials.

For the abridged description of the various types of clinical trials...

Read this post in its entirety:

Clinical Trials - Would you be an MS Guinea Pig?

And just yesterday, I received the following email regarding two ongoing Phase 3 trials comparing Campath (alemtuzumab) and Rebif (interferon beta-1a).

I do not qualify to participate due to having another autoimmune disease besides MS, previous (and current) use of Copaxone and Methotrexate. But you just might.

Hi Lisa,

My name is Brenna Fitzgerald and I’m writing to you from Fleishman-Hillard, a communications company, contracted to create awareness regarding two clinical research studies in multiple sclerosis. As your blog chronicles your journey with multiple sclerosis, I wanted to let you and your readers know about two global clinical research studies that are seeking adults with relapsing-remitting MS.

The Comparison of Alemtuzumab and Rebif® Efficacy in Multiple Sclerosis (CARE­MSSM) I and II studies are designed to determine the safety and effectiveness of the investigational drug alemtuzumab as compared to the FDA-approved therapy Rebif (interferon beta-1a), in adults with relapsing-remitting multiple sclerosis. The studies will look for differences between these drugs on the progression of disability and in the number of relapses (flare-ups) and brain lesions caused by MS. The studies also will compare the side effects of the drugs and monitor for risks during and after treatment.

Current therapies require frequent, long-term administration. When compared with no treatment, they have been shown to reduce the number of relapses, slow the formation of MS associated lesions in the brain, and impact progression of disability. A need still exists for more effective therapies to further slow the progression of disability.

Studies measuring investigational treatments against standards of care are advancing knowledge of these drugs on the disabling effects of MS, which may impact the patient's quality of life. Every patient in the CARE-MS studies will receive active treatment; there is no placebo. Participation in the CARE-MS trials may offer participants the opportunity to help advance research in the treatment of MS while taking a role in their healthcare.

Alemtuzumab, Rebif, the annual dose of steroids, and study-required procedures are provided at no cost.

To be eligible to participate in the studies, volunteers must be between the ages of 18 and 50 (CARE-MS I) or 18 and 55 (CARE-MS II) and meet specific criteria, including having a diagnosis of RRMS and first experiencing MS symptoms within the last 5 years (CARE-MS I) or 10 years (CARE-MS II).

For more information about the studies, please call 1-503-432-4725 or toll-free
1-888-404–MS-CARE (United States only) or visit There, you will find additional information about the studies and an online prescreener, which will allow people with RRMS to determine if they meet initial eligibility requirements.

If you find this information useful, I hope you will consider sharing it with your readers and posting 1-888-404–MS-CARE and a link to on your blog.

Lisa, thanks for your time and consideration. Please feel free to contact me at if you have any questions or would like to discuss the studies.

Best regards,

Brenna Fitzgerald

Genzyme Corporation is the sponsor of these studies. Bayer Schering Pharma contributed to the funding of the studies.

Genzyme® is a registered trademark of Genzyme Corporation. All rights reserved. CARE-MSSM is a servicemark of Genzyme Corporation, Ó2008. Rebif® is a registered trademark of EMD Serono, Inc.

Brenna Fitzgerald

Account Executive

Fleishman-Hillard, Inc

855 Boylston St | Boston, MA 02116


Monday, December 1, 2008

Needle Nostalgia - Copaxone and Me

Three years ago on this date, December 1, I began a new life.

I 'shot up' for the very first time...and not with a camera, but a needle.

A needle and a needle-gun, aka the Autoject2 for glass syringe.

My own special MS nurse, Nurse Carol, asked me, "so where do you wanna do it?"

"Ummmm, I guess the thigh first."

"Ok, drop trou." --- Ok, so she really didn't say that exactly, but you get the idea.

It was a Thursday so I chose my Thigh on the Right.

Get it? Thursday = TR = Thigh Right. I'm so clever (haha).

So this is how I decided where to inject and how to rotate.

Remember, kiddos, rotation of injection sites is VERY important for skin health.

Thursday = Thigh on the Right
Friday = Fanny on the Right
Saturday = Saddlebag on the Right
Sunday, Love = Saddlebag on the Left
Monday = Moon (fanny) on the Left
Tuesday = Thigh on the Left
Wednesday = Hump day = Middle Hump which is the Abdomen

Notice that I chose to never inject in my arms. That has been my personal choice and I've stuck to it. Arms are for creating music, not for pain and needles. LOL.

The MetaCarnival meets the Carnival of MS Bloggers

Kim of Emergiblog fame hosts the second edition of the "MetaCarnival" and invited the Carnival of MS Bloggers to join the fun. We are included among discussions of science, surgery, neuroscience, medicine, anthropology, and nursing.