Letter from Mother of MS Patient

As regular readers of Brass and Ivory know, many who comment and the many more who do not, I am straight-forward and sometimes brutally honest about the information and ideas I encounter. I do not enjoy being manipulated, nor do I relish a good argument for argument's sake alone.

I really am the shy, quiet type in real life, albeit confident in my area of expertise. As someone who passed the Calculus AP (B/C) test in high school without ever sitting in on the class (story for another time) and passed with a very high score (enough to fulfill all college math requirements), I am a quick study - smart and logical. That's just me.

Recently, I wrote about a drug company, a public relations company, a pharmaceutical promotions campaign, a Newsweek article, and an MS patient with connections to each. The patient, Gregory Roehrich, was brave enough to lend his story and his face to the cause of MS Awareness.

March is designated National MS Education & Awareness Month, by the Multiple Sclerosis Foundation. March is the month which The Montel Williams MS Foundation is holding it's big Gala fundraiser honoring Billy Tauzin, CEO of PhRMA (Pharmaceutical Research and Manufacturers of America.) And March 10-17, 2008 is MS Awareness Week for the National MS Society.

Do not be surprised if persons with MS are present through various media sources during this time. I point you to our friend Mandy who asks some basic questions regarding what exactly we want people to know about MS and more importantly living with MS.

Now I share with you an email that Gregory's mother sent to me today which she offered to share with you. She has some concerns over the discussion which ensued after I wrote PR for MS - Ogilvy and Betaseron. I highly recommend that you read the article and the comments first to understand some of the references which Mrs. Roehrich makes.

Some final things which I'd like to say is that I commend Gregory for being pro-active in his choice of managing his MS. It is wonderful that he has not suffered severe disability and I hope that his stability continues for a very long time. Eating well and exercising are excellent ways to protect your body's resources and it's unfortunate that this was not included in the Newsweek article. Drugs alone do not keep us healthy.

Dear Lisa,
I am Gregory Roehrich's mother and felt compelled to write.
I would have responded to the blog but am embarassed to say that I don't have a clue how to set up the account.

I find it very curious that you would spend precious time researching my son's article in an attempt to find something negative to post. As far as his "can do everything" attitude, I hope and pray he never loses that. Having to tell my 19 year old that he as been diagnosed with multiple sclerosis was the hardest thing I ever did in my life. To then sit down and have a conversation about life changing as you know it but "that" life does not have to a negative living with MS was a whole other conversation. My son got that wake up call very early on in life and has made choices in how he wants to live his life based on this diagnosis. He has made the choice to create balance in his life both in his career and in his personal life--something that many of us don't do until we have that mid-life crisis. What he failed to mention in his interview is that not only does he take an interferon, he also eats very well, exercises daily and takes various supplements to complement the interferon. What is so wrong with having his face and attitude linked to the image of MS? What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future? What is so wrong with the PR company in the background promoting a "feel good" campaign? Everyone has the choice to take medication or not--in my son's case, I don't know if it is the Betaseron working, the supplements and lifestyle, a combination of both or maybe none of the above, but I know I would never encourage him to eliminate any of them. I am very proud that my son had the courage to put his face out there knowing that there would definitely be a stigma atttached once people found out he had MS. He has faced that stigma but the overwhelming positive impact he has made on other people's lives has outweighed any of the negative.

Feel free to post my e-mail on your blog.

I responded directly to Mrs. Roehrich and afterwards she still felt comfortable with my posting her email on the blog. And she asks some excellent questions, worthy of reflection.

• What is so wrong with having his face and attitude linked to the image of MS?
• What is so wrong with having another young man or woman faced with this diagnosis and thinking that their life is over, reading this article and having some hope for their future?
• What is so wrong with the PR company in the background promoting a "feel good" campaign?

How would you answer Mrs. Roehrich's questions?

Carnival of MS Bloggers #5

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

Enjoy!!

Merelyme discusses her ballerina toes - or maybe it was she who said that she had "No Use For Toes."

"Okay so I will never be a ballerina. Mostly my toes get used for lifting me up so I can see better in crowds as I am on the short side. Five foot two, eyes of blue, koochie koochie koo. Other than that, my toes don't serve much purpose other than peeking out from summer sandals."

But the toes can be useful in revealing information regarding neurological damage. The Babinski's sign, determined by a test which involves drawing a semi-sharp object along the bottom of the foot, is present if the big toe moves upwards and/or the toes fan out. The normal response in adults and children is for the toes to reflex downwards.

"So what was I saying? Oh yes...I will never be a ballerina. This was confirmed by my neurologist, who after performing real doctor tests in her office chided, "Well you are no ballerina are ya?" And you know...I am okay with that. My toes are just fine about hanging out in sandals or comfortable sneakers. They have had their day in the sun and could wish for little more. Perhaps one day I will break down and treat them to a pedicure. I think they deserve it, don't you?"

Announcing the birth of a brand new MS Blog, Me Myself and MS, coming to us from the UK.

Emma shares the history of her symptoms from optic neuritis in 2000 (just like me), the diagnosis in 2006 after her 1st relapse, and subsequent relapses #2, #3, and currently #4.

Let's all welcome Emma to the MS Blogger Club.

Speaking of MS blogs, Carolyne's MS Odyssey announces a new look for the MS Means website... The site is newer, slicker - with a black background and the ability to change text size. While MS Means has been undergoing major changes, so has Carolyne as she adjusts to a new, more restricted lifestyle due to MS fatigue.

"Well, I have always believed that life is not about finding yourself, but about creating yourself. I am creating a new “me” as I go through this process - but I am well assured that the basics of who I am are still intact."

For Privacy’s Sake: Let’s Be Careful Out There! - MS Maze

"I can’t even begin to guess the number of health-related blogs which exist. Most are written by and for people who have been diagnosed with a chronic condition. The authors are looking to lend their support as well as to receive it. At the risk of sounding our own horn, we are a very well-intentioned group of people.
"In our effort to enlighten and entertain, we often share very personal information. We tell of our diagnosis, our prescribed medications, our trials and tribulations. We spill out our heart and soul. At the push of a button, this information is available for all the world to see and, once set free on the world-wide web, can never be taken back."

Mandy has some wonderful thoughts about knowing where to draw the line. So let’s do be careful out there!

Sharing her inspiration, Diane tells of her experiences, past and present, in search of ways to connect with others who live with chronic illness in "Strong Together As One, Let Us Fly."

"The idea for putting together a list of 100 chronic illnesses came as I was watching Richard M. Cohen, author of "Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” speaking about the next book he was working on, during a live appearance on the Don Imus TV show. Mr. Cohen spoke of the horrible job the medical community and our country does of understanding the lives of those who live with chronic illness. Mr. Cohen has MS, and I open his book often for inspiration. I couldn’t wait to read his next book as the topic was something I had been learning to grapple with for most of my adult life."

Inspired by BrainCheese's 100+ MS Blogroll, Diane set out on a quest to find 100 blogs written by those who live with chronic illness. What were the requirements? The blog had to be personal, no sales or medical information types, no agendas involving religion or societies, a diversity of bloggers and a spirit of life beyond an illness box was a must. Diane's list is a wonderful resource for us all.

"And on that day when we cannot walk and words can come no more, we still stand together. When we no longer break bread with one another, still we will sit at the same table. Our hearts will stay strong. In thought and with spirit, we will fly. Our own compasses point the way, and the winds forever will be at our backs.”

- Richard M. Cohen, author of “Strong at the Broken Places, Voices of Illness, a Chorus of Hope"

In conclusion - and "In Honor of the Academy Awards - Oscar Night for SiCKO" - I share my 'almost famous' story with you. Michael Moore and Meghan O'Hara may not have won the academy award but I certainly have gained much from my ever-so-brief experience with them.

Remember, the next Carnival of MS Bloggers will be hosted here on March 13, 2008. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, March 11, 2008.

Thank you.
Comments for this Post

Federal Money for Multiple Sclerosis Research

Ask Your U.S. Representative to Support $15 Million for MS Research (h/t MS Activist Blog)

New federal money is now available to multiple sclerosis researchers, thanks to your MS activism. We can build on that momentum in Congress and secure new avenues for more MS research funding. Ask your U.S. Representative to support a $15 million appropriation to the Congressionally Directed Medical Research Programs (CDMRP) for MS research.

Take action today:

• Send a quick email to your Representative.


• Call your Representative's Washington, DC, or district office to talk about this issue. Call 1-800-828-0498.


• Make an appointment to visit with your Representative or their staff in the district.


• Attend a community or town hall meeting. Call the district office for a schedule.

For your Representative's contact information, visit http://www.house.gov/.

You can use these talking points and background when you speak with your Representative:

• A Dear Colleague letter is being circulated in the House by Congressmen Russ Carnahan and Michael Burgess. The letter requests that $15 million be provided for multiple sclerosis research through the Congressionally Directed Medical Research Programs.


• Please have Representative ____ sign on the letter by contacting Congressmen Carnahan or Burgess. As a constituent and an MS activist, I encourage your support of this investment in MS research.


• [Share how MS has impacted you personally]


• Many U.S. veterans have stories and symptoms of multiple sclerosis. Preliminary evidence suggests that Gulf War veterans could have an increased risk.


• A study found an unexpected, doubling of MS between 1993 and 2000 in Kuwait, which suggests a potential environmental trigger for MS because of exposure to neurotoxins such as burning oil fields and poison gases.


• More than 25,000 veterans being treated in the VHA are living with a diagnosis of MS. A recent study in the Annals of Neurology identified more than 5,000 cases of MS among U.S. veterans that were deemed "service-connected."


• MS is a chronic, often disabling disease of the central nervous system and is generally diagnosed between the ages of 20 and 50, the prime of life. The cause of MS is still unknown, the symptoms are unpredictable, and there is no cure.

Now is the time to pursue a specific appropriation for MS research in the CDMRP for fiscal year 2009. The deadline to sign on to the Dear Colleage letter is March 14. This program is funded annually through Department of Defense (DoD) appropriations bill. Last year your efforts influenced Congress to include MS as one of the areas eligible to compete for research funds through the DoD research programs in the FY 08. This is the first time that MS has ever been listed.

The DoD has an obligation to fund research into MS related to Gulf War service. This research would not only benefit our veterans, but could help move us closer to a world free of MS for all those living with the disease. Click here for more information on the federal money newly available for MS research grants.

Join the movement with National MS Society Advocacy

PR for MS - Ogilvy and Betaseron

Positive public relations exposure is a good thing when it comes to viewing multiple sclerosis in the general public. Tonight I came across two interesting items linked to by fellow MS bloggers.

Anonymous, blogging at Self-injecting Chinese hamsters since 2007, points us to an online-only Newsweek piece "Pins and Needles" in their Health Triumphs column. The story features Gregory Roehrich who was diagnosed with multiple sclerosis at age 20 and made Betaseron his disease-modifying drug of choice.

"My first step was to start treatment immediately with an interferon drug that I inject every other day. (Starting treatment after a first "attack" is important, as it may help delay disability.) Luckily, in the six years since I was diagnosed, the disease has progressed little."

For his 21st birthday, his parents gave him "a scheduled trip to go skydiving." In the six years since diagnosis, Greg has also enjoyed facing his fear of heights by rock climbing and "hanging on with my bare hands."

"It just goes to show you that attitude is a muscle you should flex every day. That's one reason why I still go climbing, too, despite my fear of heights. Whether it's on cliffs, mountains or boulders, I've climbed roughly once a week since I started three years ago, and it's taken me everywhere from Las Vegas to Italy and Switzerland. So far I've done all it without a wheelchair, walker or cane—in fact, without any hint of disability."

Then, Carole blogging at Carole's MS Blog, points us to "The Image of MS," [editor's note: The Image of MS website has been taken down since this original blog posting. Portions of the exhibit are visible on MS-Pathways.] a photographic exhibit of 27 individuals living "normal and active lives" despite facing a life with MS. Regarding the project, photographer Joyce Tenneson had this to say:

"It is my vision that these portraits will help change public perception that people with multiple sclerosis (MS) lack independence or strength. They are ordinary people who, despite having a sometimes debilitating disease, manage to live normal and active lives.

"I have always believed that art should be used to change the world. I saw the chance to work on this initiative as a "gift from the gods." Multiple sclerosis remains a mystery to the public at large, so this was an opportunity to capture the real face of people living with MS.

"Everyone I photographed has a truly inspiring approach to life, and I was overwhelmed by their positive attitudes and moving stories — all portraying a common spirit of strength, determination and hope. I sincerely hope that people who visit this site take away a little bit of inspiration from the participants about adapting to life's challenges and overcoming them.

"I think, often, there's an untold beauty about people who overcome challenges like MS to live the kind of life many of us take for granted. There's grace in the everyday existence of every person in this exhibit. That's what I wanted to capture — the real-life storytellers, the ones who can replace myths with reality and turn misconceptions into understanding. Being a part of that transformation is my focus and honor."

Although the stories are inspiring, they are limited to patients who use Betaseron because The Image of MS is now a pharma PR website for Bayer HealthCare Pharmaceuticals Inc. who completed the incorporation of Berlex Laboratories into their company in early 2007.

[Here is an undated article which describes the original "Image of MS" website and the work of one participant.]

[Here is the March announcement for "The Image of MS" photographic exhibit which has been traveling through Europe, Asia, etc.]

It's fine and dandy for a pharmaceutical company to use inspirational stories to promote their products. In fact, we need inspiration every once in a while. It's good for the soul.

But what I find most interesting is that Gregory of the Newsweek column happens to be one of the featured "Images" of the photographic exhibit launched in 2006 for Berlex Laboratories. And - the contact person for the "Images" site is from Ogilvy Public Relations, a PR company with a flair for internet communication which influences consumer beliefs and behavior.

The name Ogilvy caught my eye specifically because I have noticed many visits to my little ol' blog from someone in their New York office. I don't doubt but someone is researching how to motivate and reach those of us with multiple sclerosis or other health issues around the world wide web.

Who is your Hero?

"Schoolhouse Rock - My Hero, Zero"

National MS Hero Awards Begin!
January 22, 2008

In honor of National MS Education & Awareness Month(R), the Multiple Sclerosis Foundation (MSF) is now accepting nominations for the National MS Hero Awards. Five winners will be selected in five categories. Nominate your hero in one category only. If you wish, you may nominate a different hero in each category.

The MS Superhero – a person diagnosed with MS
The Caregiver of Caliber – a person who cares for someone with MS
The Herculean Helper – a family member or friend who helps someone with MS, in any capacity, who is not the primary caregiver
The Armored Advocate – a person who takes personal or political action on behalf of a person(s) with MS
Captain Healthcare – a healthcare professional who serves individuals with MS

Applicants are asked to submit a story of 500 words or less, describing
their hero and why they have nominated them. Prizes will be awarded in
each category. The grand prize winner will receive passage for two aboard the 2009 MSF Cruise for a Cause! (airfare not included.) Winners will also be featured in MSFocus. Deadline for entries is March 31st, 2008.

Official Guidelines

Entries must meet the following criteria:
• Applicants must nominate their hero in one category only. However,
applicant may nominate a different hero in each category. (Please submit
each nomination on a separate form).
• Applicant and hero must grant the MSF the right to use their name and
photograph for promotional purposes.
• Applicant and hero must agree to sign a disclaimer.
• Applicant and hero must be legal residents of the United States.
• Application must be postmarked/time-stamped on or before 03/31/2008.
• Applicants may not nominate themselves.
• Employees of the MSF and their families are ineligible.

Here are the complete rules and entry forms. For more information visit http://www.msfocus.org/ or call 1-888-MSFOCUS (673-6287).

National MS Education and Awareness Month is a national campaign, spearheaded by the MSF and affiliated organizations to promote an understanding of the disease and provide education, empowerment, and assistance to those living with it.

MS is a chronic neurological disease that is currently without a cure. Two hundred people are diagnosed with MS every week and more than 2.5 million people are living with this disease worldwide.

Multiple Sclerosis Foundation

The Multiple Sclerosis Foundation is a national, non-profit organization dedicated to improving quality of life for individuals with MS through educational programs and support services.

(h/t Kim for reminding me of this program as I have yet to read my recent MS Focus Magazine)

Stuff that makes life easier....or not.

Here's a new random feature at Brass and Ivory

Stuff that makes life easier....or not.

Yesterday as I was conducting the (not so completed on a regular basis) girlie task of shaving the hair, and some winter-dry skin, from my legs, I had a thought.

Yes, I think to myself while in the shower.

I am thankful for the brilliant people at Schick (I had to look that up later) for designing the Intuition Plus® Razor.

If you don't know what this is (and probably most girls already do), the Intuition Plus® Razor has a wide, curved, slip-resistant handle...three blades on a pivoting head...and a skin-conditioning, lather-creating, shaving solid which surrounds the pivoting razor head for a no-shaving-gel-required smooth shaving experience.

Ok - before you start thinking this is some type of paid advertising. It is not!

I was thinking of those persons with MS who may have dexterity issues with difficulty keeping hold of a razor, or who seek simplicity in the shower and fewer lotions and potions on the shelves, or who like to find ways to combat winter-dry skin with the best exfoliator out there, being the razor.

Some years ago (honestly I don't know when), I received a sample razor in the mail from Schick. I thought it looked a little odd, but tried it and liked it...still do.

Replacement blades are sold separately from the uniquely-shaped handle, which is a smart idea. However, don't tell Schick - but I still use the sample handle I received in the mail such a long time ago and haven't purchased a new one. So mum's the word - okay?

Pros:

• I haven't nicked myself with this razor, even around the ankles.


• It is ready to go. All you need is wet skin, seriously.


• It is easy to hold and the pivoting head makes going over curves a snap.

Cons:

• When rinsing the shaved hair from the razor blades, and yes sometimes my leg hair has become longish between shaves, I worry that I'm rinsing away the valuable moisturizing/shaving cream solid.


• The solid often wears away unevenly, but this can be worked around if you are clever enough to glide the solid over the skin in one pass, then glide the razor over the lathered skin in the next. Yes, this does require more thought.


• The resulting shave may not be the closest, maybe I'm not pressing hard enough or making enough passes at one spot, but it is definitely the easiest I've experienced.

So - that's my tip for the MS ladies out there - and MS men if you so desire a razor designed to smoothly shave those muscular legs of yours - for clumsy fingers and awkward grips, I recommend trying the Intuition Plus® Razor.



Again, this is not a paid endorsement, merely my personal opinion derived from my personal experience.

If you have any tips on helpful, or not so helpful, items out there, please send me your recommendations via email.

In Honor of the Academy Awards - Oscar Night for SiCKO

SiCKO has been nominated for Best Documentary Feature in the 80th Annual Academy Awards, show airing February 24, 2008. Rather than discuss the American healthcare system and all of it's deficiencies, I'd like to share a story with you.

In November 2006, I met a kind, respectful, and very intelligent person named Meghan O'Hara. Meghan happens to be producer of SiCKO and had come to my music studio for an on-camera interview.


This is Meghan, her film crew, and me.

Francisco Latorre, production sound

Peter Nelson, camera

Meghan O'Hara, producer

Lisa Emrich, at the piano

Christine Fall, field producer
(not present)

How in the world did I meet Meghan and her film crew you ask?

Well, after being diagnosed with multiple sclerosis, I encountered some difficulty in receiving and paying for the medical treatment I required - and this while being 'fully' insured. I had been put through the ringer by several programs which propose to help uninsured and under-insured patients pay for and obtain their medications or which focus on multiple sclerosis.

By the summer 2006, I had approached and/or applied to programs offered by (or previously offered by) the following organizations:

• Shared Solutions (refers patients to NORD)
• National Organization for Rare Disorders
• National Multiple Sclerosis Society (no money for meds)
• Multiple Sclerosis Society of America (no money for meds)
• Multiple Sclerosis Foundation (no money for meds)
• Patient Advocate Foundation
• Patient Access Network Foundation
• PAF Co-Pay Relief Program (no longer has MS fund)
• Patient Services Incorporated (no longer has MS fund)

And since that time, I have also had interactions with the following:

• Cephalon - Provigil Assistance Program
• National Organization for Rare Disorders
• Partnership for Prescription Assistance
• HealthWell Foundation
• Chronic Disease Fund
• Pfizer Connection to Care
• Rx Outreach

So it was due to struggling with 'the system' and being 'rejected and denied appeals' to obtain the necessary assistance that a friend of mine passed on an email she had received from an organization she is a member of in the mental health field. The email was an appeal for real life stories for a documentary which Michael Moore was filming on the American healthcare system.

His production company was looking for 3 real people who fit certain criteria to feature in his movie SiCKO. My real-life situation fit the requirements - and I thought to myself "why not" - so I spent an hour or so that afternoon and composed a lengthy email detailing my situation, my struggles, and the numerous insufficient outcomes. I pressed the send button although I had never seen a Michael Moore film before.

Less than 2 weeks later, I received a phone call from Christine Fall, a field producer of Michael Moore's production company. Apparently, my email had grabbed someone's attention and found it's way to Christine's desk for further investigation. We spoke on the phone many times over a couple of months with her asking questions related to what I had shared in my email, follow-up questions from our talks which her colleagues wanted asked, and questions related to other experiences and thoughts I had about certain things (including the Big Orange 'Help is Here' Bus.)

Eventually we worked up to the big question -

"Would you be willing to be interviewed on camera?" I said yes.

So in November 2006, on a rainy Thursday evening, a film crew came to my music studio to interview me regarding my experiences with the 'heathcare system' and to see me in action with a student or two. Of course, I had to okay it with the student and his/her family beforehand.

I had never spoken with Meghan before and we did not discuss any of the questions she would ask beforehand. That way what was caught on camera was non-rehearsed and organic. My mother watched the monitor for those several hours and later said that I was very impressive on camera - calm, articulate, compelling. The interview lasted much longer than Meghan or I had anticipated, likely due to my charismatic nature (hehe).

During the interview itself, I didn't crack a tear or resort to showing the piles of bills, explanation of benefit statements, or rejections from various programs. I spoke the truth, clearly and honestly, without great drama or pretense. I even shared my discoveries regarding Cephalon's deal with TEVA regarding Provigil.

A month or so before the Washington, D.C., premiere of SiCKO, I received a call from Rehya Young (associate producer) informing me that my scenes had been cut from the film, although there were those who fought to keep them in. But who knows why editors make the decisions they do, otherwise one of the major difficulties which MS patients face, being expensive pharmaceuticals and financial security, would have been placed on screen for the world to see. Oh well - a missed opportunity.

I was invited to attend the DC premiere which I did in June 2007 as Mr. Moore's guest. Outside the theater, several reporters from local papers were looking for folks involved with the film to interview. My mom got someone's attention to see if he would like to interview me. The question first asked was, "Were you one of those who went to Cuba?" Well, no. "Not interested, sorry."

Media only wants the "stars." Another missed opportunity.

I did enjoy the movie and afterwards met Meghan in the lobby of the theater. She recognized me immediately and apologized for cutting my scenes. We talked for a while and she asked if I had met Michael. I had not.

I stayed around until the crowd dispersed, leaving only a smaller entourage. Meghan introduced me to Michael and his first words were, "you're the horn teacher!"

"I'm sorry we had to cut your scenes."

He told me that he had asked the British pharmacist about the cost for filling my prescriptions in England. (If you saw the film, you know what this refers to.)

And that maybe....include on the DVD....

But they're not - a final missed opportunity.

However, my name is included in the credits, right below Danny Elfmann.

I'll be watching and will cheer if SiCKO wins the award.

MS Carnival #5 - Submissions Due

"A gathering of MS Bloggers sharing thoughts, opinions, news,
and inspiration around the Blogosphere."

It's time to prepare for the next Carnival of MS Bloggers and to feature the best of the MS blogosphere. When submitting your post, please include:

• Your blog's URL
• Your post's URL
• Brief summary of the post

Submission Deadline - Tuesday, February 25, 2008 (noon)

You may submit via Blog Carnival or email.

Participating is Easy!!

If you are a blogger with MS or someone who blogs about MS, you are invited to participate. Here's what you should do...

• Choose one of your best posts from the past 2-3 weeks
• The topic does not need to be limited to multiple sclerosis
• Submit the post for consideration in the next Carnival edition
• Be sure to include a brief synopsis (or summary) of the post

When the Carnival is published, you will receive an email from me that the edition is available. Then, post an announcement on your blog (in a separate post) that the Carnival is available, including a link back to the specific edition.

Let the community grow!!

Also, if you'd like the code to the Carnival Button (on the left sidebar) simply send me a brief email, or try to copy/paste the button and place it on your very own sidebar.

Who Needs to Know?

The NYT has a brief article today - I'm Ill, but Who Really Needs to Know?
- which touches on the questions we have each asked regarding telling others about our MS, or any other chronic illness for that matter.

The article itself is part book review - Richard Cohen's 'Strong at the Broken Places' - and part employee advice regarding Americans with Disabilities Act. An excerpt...

"An excellent resource for workers facing this choice, she said, is the Job Accommodation Network, a service of the federal Department of Labor. Most questions on its site, she said, come from workers, not management, and “they are looking for suggestions on how to do adjust their work without bringing it to the attention of their bosses,” she said. They buy themselves custom footstools and wrist-rests, and sneak off to restrooms to take medications. To hide their condition on the worst days, they call in sick, giving a reason other than their chronic illness."

As we've discussed here before - Who do you tell, when do you tell, and why do you tell others you have MS? - the choice is a personal one and one which needs not be rushed.

So if you are in a position to consider the pros/cons of disclosing your disabilities, the Job Accommodation Network has a wealth of information.

Go check it out and see if the Americans with Disabilities Act offers the protection you need for your situation.

Gooz News hosts the Health Wonk Review

Merrill Goozner of Gooz News hosts this week's Health Wonk Review. Clear, concise, and packed with almost 2 dozen of the headiest health policy discussions around the blogosphere. And I am honored that my message to Big Pharma is included.

Yippee! Yay! Go Federal Trade Commission!!

It's rare when I read about government lawsuit filings and I simply want to cheer and jump up and down. Well, it's happened.

Here's some background information first. In 2005, I was finally diagnosed with multiple sclerosis. One of the many problems I was experiencing was MS fatigue - not the I'm just a little tired fatigue, but I'm DEAD TIRED, USELESS, and UNCONSCIOUS at 2:00pm fatigue.

So my neurologist gave me some samples of Provigil (modafinil) to try. And it did help. He was able to give me more samples, but explained that eventually I'd have to fill a prescription. In 2006, I did just that for a 3-month supply.

What I didn't expect was that it would exhaust almost an entire year's allowance for prescription medication from my health insurance!!

$1442 for 3 months!! and that was the 'negotiated' rate with BCBS.

So research Cephalon did I.

Prescription Assistance? No way they said and NORD agreed.

Generic Options? uh-uh

News? Interestingly, yes. A deal with TEVA - maker of Copaxone and many other generic drugs.

Well, I was already peeved at TEVA and NORD, so this just sparked more research. I discovered where to read TEVA news and announcements which I did endlessly.

I also discovered that TEVA and three other generic drug makers were 'paid-off' by Cephalon to settle patent litigation filed to enter the generic market for modafinil. At the time, details of the deals were not disclosed so I didn't know how much money was involved. Now we know that the payments exceeded $200 million and that Cephalon sales of Provigil in 2007 exceeded $800 million. That's just insane.

You see, drug companies file suit to get a chance to enter the generic market of a drug which approaches coming off-patent and the first to receive the go-ahead gets 6 months exclusivity to market and sell their generic version of the drug. TEVA is one company which often races to the front of the line and is able to sell their generic version of a new drug at a price equal to the brand-name drug for those 6 months. This is what TEVA did with sertraline (generic of Zoloft.)

But back to the present -

The Federal Trade Commission has filed suit against Cephalon for anticompetitive conduct. A brief article on the WSJ Health Blog summed it up nicely:

"Governments have been worked up for a while over the prospect that the sellers of branded drugs can keep charging high prices by paying generics manufacturers to stay out of the market. Regulators have suggested that the branded manufacturers are basically gaming the system and forcing consumers to pay inflated prices."

The Antitrust Review has an easy-to-follow summary as well.

And today -

Dr. Wes discusses the recommendations of some bureaucrats who believe that the answer to improving cardiac care during the night shift is...
can you guess...here it comes...modafinil. Yep, that's it, dope the doctors.

But an angle which I hadn't thought of related to this Cephalon debacle comes from John Mack of the Pharma Marketing Blog. John discusses how we may benefit from the War in Iraq through increased generic pharmaceutical competition.

I must...I must...BLOG!!!

Diane has a rather thought-provoking post today discussing what it may be inside each of us which blogging allows us to access and release.

"You see, it isn’t his blog or him that has me questioning this blog world---it is me. Who was that furious, disgusted person? His older, white man, woe is my kind-let’s get back to the good old days as God intended, type is a dime a dozen. I’ve worked with, lived with, dealt with his kind many, many times in my life…yet HE got to me."

I've asked the question Why My Blog?!!, as have other MS bloggers, while contemplating the various whys and whats of interacting in the blogosphere.


While I need a little more time to process the thoughts which Diane has invoked, I'd thought you might appreciate this little tidbit of humor.


Enjoy.





Thanks to http://xkcd.com/386/ for the giggles.

SCHIP in the News AGAIN!!

If you're someone interested in health policy or someone who happened to follow the whole SCHIP debacle last fall, you might be interested in this little tidbit of information.

Bush administration now willing to increase SCHIP spending by $19.3 billion only weeks after vetoing a bipartisan compromise by Robert Laszewski

and

Bush's SCHIP measure called overdue and underfunded by Farah Kahn

Now it appears that the Bush administration has "recalculated things saying, 'We have better estimates now.'"

So this is what happens when folks in charge, who have a personal agenda and narrow view of situations, don't listen to the very ones who KNOW the situation, ie. the states' health departments and the very citizens who need their services.

Recently a fellow blogger discussed the complicated redtape involved with receiving services for her son. It doesn't matter through which agency these services are funded, the point remains that citizens in the trenches are not being heard when their needs are clearly expressed.

I want to say to Bush and the presidential candidates...

Listen to your citizens, listen to the people, listen to the little guy who is too busy in the trenches of life and surviving to come lobby you or flatter you or rah-rah in the crowds.

Attend to the needs of those less fortunate and struggling day-to-day to find breathing room between the challenges of life. And I do thank you for finally conceding (somewhat) that more funding is necessary to maintain a vital program for the health of our country.

To my reader, I recommend the above articles. They are short but highly informational.

MS Forums Online - Where do you go to talk?

It recently came to my attention that there may be a few folks looking for fresh places to pull up a chair and talk awhile, vent, or ask questions of those MSers who have gone before them on this path.

I'm talking about MS Forums and Discussion Boards.

Personally, I'm not much for online discussion boards or forums. I used to be active in one which was made available by Teva Neuroscience, maker of Copaxone, but they shut it down for reasons not fully explained.

My feeling at the time was that it was becoming increasingly apparent that patients were contacting each other off the website and offering real help to one another. Too dangerous I suppose since a recurring theme went something like this....

- "I'm switching meds and have 2 months worth of drug x in my frig....what do I do with it?"
- "My co-pays are $500 each month for drug x (approaches person above)"
- "Remember folks, transferring prescribed drugs is ILLEGAL!!"
- "But I hate to just put it down the sink...email me"
- etc.

Then there are the forums which have gone to moderating all entries. MSWorld does this now and even prohibits the inclusion of links to other websites, including blogs, in individual messages. That kinda makes the whole spontaneous conversation impossible.

I'm sorry - I'm not patient enough to post something and come back 30-60 minutes later to see if my comment was approved and if there were any responses, which also had to be approved. Give me a break.

But there are some good forums out there, including this first one which is absolutely brand-spankin-new and showing great promise. Me and My MS was started by fellow MS blogger, Jeri of Fingolimod and ME.

Me and My MS - "A journey into the unknown that you don't have to travel alone." I know that some of the most active MS bloggers have already gone over there to get things started.

Not New - But looking for Activity

MS Christian - not yet abandoned but ripe for new activity

Active Forums:

MS World - sponsored by National Multiple Sclerosis Society (USA) and various pharma companies

MS People UK - sponsored by Multiple Sclerosis Trust (UK)

MSRC Sharing Forum - sponsored by the MS Resource Centre (UK)

This is MS - unbiased and unaffiliated website

MS Refugees - started by members of the original MSWatch Forum which was closed (see above remarks)

MS Foundation - sponsored by the Multiple Sclerosis Foundation (USA)Four forums in one: Ask the Doctor, MSFriends, MSFrontiers, MSFamilies

MS Speak - sponsored by The Montel Williams MS Foundation

Brain Talk Communities - originally sponsored by Massachusetts General, but now an independent non-profit

Inactive or Abandoned?

MS Support Network - sponsored by Multiple Sclerosis Mobility Foundation (Canada)

MS Log Forum - seems to be somewhat abandoned but local to Minnesota?

Then there are the newer online communities which are a feature of the Web 2.0 movement.

Patients Like Me - "Share your experiences, learn from others, andconnect with patients just like you."

Health Central - MS Central - Where our very own Mandy of MSMaze is a featured expert. "Our experts are people whose passion, dedication, and proven experience make them leaders in their community."

Revolution Health MS Support Group - "Join discussions, share stories and find people like you."

Live Journal MS Support - LJ Users with MS

Finally, we have the friendly community of MS Bloggers. Check out the enormous list of links on the left-hand side of the page. Lots to read.

I'm sure I've probably missed some. If so, please leave me a comment and I'll add them on.

Thanks

Carnival of MS Bloggers #4 - Valentine's Special

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


Today is Valentine's Day -

A day of flowers and hearts,

chocolate and cupids,

gushy proclamations and

tender whispers of devotion.

In other words -

A Day of Love. Love for your sweetie and love of yourself.

So what's the first thing that comes to mind when you think of romance?

Really? Are you sure?

See, I thought you'd say sex. Hmmm. I'm usually a pretty good mindreader.

In honor of Valentine's Day, Shauna starts off the week discussing a couple of sensitive subjects - Penis, Vagina, and Breasts - in addition to SEX. But what does a discussion of sex and sensations have to do with MS?

"One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you?

For more, you simply must go read Shauna's post. It may not be pornographic, but it is certainly titillating. (Side note: Shauna claims that discussing sex is a sure-fire to increase blog traffic. I guess we'll see if she's on to something.)


Sex isn't the only subject appropriate for Valentine's - the love of friends and family is often irreplaceable.

Diagnosed the week before Thanksgiving in 2007, Daniel discovered just how "one man's struggle became a rallying point for dozens of others."

"I knew I had to tell people, but I didn't know how to do it. How do you tell people that you have known for your entire life that you have a life-long illness with such a stigma attached to it? How will they react?"

"My friends and family demonstrated shock, fear, sadness, love, perseverance, compassion, disbelief and just about any other feeling that one can experience upon hearing such news."

"One of the most difficult times in my life was met with so much love and an outpouring of emotion that it was incredibly overwhelming."

Daniel chose to tell others about his MS early on and received wonderful emotional support from friends and family. But how do you decide to share your diagnosis with others?

There comes a time when each person contemplates the big questions - "Who do you tell, when do you tell, why do you tell others you have MS?" - as discussed recently by Lisa.



A common symptom of MS which the books don't often discuss is GUILT. What do you do when faced with "MS and Broken Vows" as Mandy shares.

I vowed once again that it wouldn’t happen. Once again I broke those vows.

I vowed NOT to feel guilt at having MS, or for relapsing.

I vowed NOT to apologize to my husband for my MS.

I vowed NOT to speak of MS every day.

Five years into MS and I still cannot keep those vows.

A loving message for Valentine's Day from Mandy to her husband Jake.
More at MSMaze...


Multiple sclerosis becomes a lifelong companion - one which is always there for you even after you've both lost touch. But can we really ever forget about MS?

Searching for a solution to nighttime bladder problems, Kim may have found a practical solution - ear plugs. Curious? read more...


On this Valentine's Day when your partner snuggles up close and wants to know more about how you feel, or what exactly MS feels like, start with the question - can you imagine? Here's one of Joan's excellent examples.

"Have you ever had your leg fall asleep? Then you are familiar with that 'pins and needles' feeling. It usually passes once circulation is restored to the leg. Now imagine having that 'pins and needles' feeling in both legs constantly."

Continuing the sharing theme, Callie shares her list of annoying MS damages. Why an itemized list you ask? Just because she felt like it. Maybe you will see a part of yourself in her descriptions and know that you are not alone in this journey.


Choosing to view multiple sclerosis and his life experiences - no matter how devastating - as a gift, Chris discusses differences between a vocation and an occupation. Chris is the author of "Life Interrupted-It’s Not All About Me."

"By sharing my actual experiences with chronic illness and divorce I hope to provide others with the knowledge, awareness and understanding intended to help them avoid making the same relationship-destroying mistakes that I did by dealing more positively with the emotional and physical stresses put on a relationship when life is interrupted by chronic illness or disability."

Finally, in response to our recent discussions of love, depression, and loneliness, one reader shares valuable advice on choosing a Therapy Doc, or is that Dodo Bird? Thanks Doc.


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

Thank you.
Comments for this Post

Annoying mysteries of life from a frustrated blogger

Why is it when you want to be alone that your phone won't stop ringing?

Or when you just want to go online that your computer connection goes kaput?

These are the questions which have plagued me the past few days. I've had such great ideas for blogging, but couldn't get online. Which also means that I've been disconnected from 'the world' where email and other bloggers live. It's hard to imagine how torturous this has been (and is probably will continue to be as I've finally resorted to establishing a dial-up connection for now.)

Then last night, all I wanted to do was to be quiet and calm after the first day back to teaching since Joshua passed. But guess what I got.....the endless phone calls. Aarghh. It's really hard to sound sweet and polite when what you want to do is throw the phone at the wall.

I guess some of my sadness is moving into veiled anger and irritability. Such is the nature of grief I suppose.

And finally today (or rather yesterday) absolutely NO ONLINE computer activity. Double aarghh!! So here I am though using a dial-up, needing to call the appropriate tech service people AGAIN to try to figure out what has gone wrong.

But anyway, I wanted to let folks know....I'm still here....sorta.

And to do it justice the Carnival of MS Bloggers may be late in coming, but it will be coming!!!!

Finally, Rob and I are going on a road trip this weekend. So I'll be absent again for a few days. But I shall return...I promise.

Sharing Grace in the Face of Illness

Since discovering The Doctor Is In, I have greatly enjoyed reading this blog.

"A physician looks at medicine, religion, politics, pets, & passion in life."

The doctor has a series going on right now discussing Grace in Christianity. Whether you are of a specific faith or believe in higher power, the truths presented are relevant to all those who are searching for meaning and purpose in their struggles, and who may feel alone and helpless.

Recently, we have been discussing issues of depression, loneliness, fear, and whether or why to reveal our chronic illness to others. Today's message on the doc's blog sheds light on why those who suffer are exactly the ones to help others who are suffering.

"But not all meet these insurmountable challenges with frustration and failure. Some — almost ironically, those most profoundly defeated by these very assaults — find another way — a way which turns their very defeats into powerful, yet humble, victories. They find in their brokenness, wholeness; in their hopelessness, hope; in their shattering, salvation and strength. It is a victory not achievable by force of determination or strength of will; its power lies in utter defeat, sanctified and empowered by the embrace of grace.

"One of the many paradoxes of the Christian faith is this: those who are most profoundly defeated are best equipped to help others suffering these same defeats. No one helps an alcoholic like a recovering alcoholic; no one can touch and comfort one mired in depression like one who has experienced that dark hell themselves — and transcended it through grace. We are afflicted that others may be healed.

"There is in today’s culture a toxic strain of Christianity, a bastard born of a great faith incestuously whored with the shallow nihilism of obscenely prosperous materialism, which teaches that we should all be wealthy, all be healed, all be delivered from every difficulty by a simple word of faith or healing prayer. But quick-fix Christianity is a Golden Calf, an empty shell of a faith made great not by wealth and comfort but by the suffering of its saints. We are delivered to deliver others; it is our pain which purchases true freedom."

This is a message which has been tapping at my door, rattling around in my heart recently. I believe that for some reason the struggles I have experienced have come to me for a purpose. Maybe not a gift to myself - but a gift to others. It is what I do with my experience and knowledge which makes it significant. And it is by the Grace of God which I have survived and will continue to thrive.

So here I am - sharing with you - my life open - to let you know that you are not alone in your struggles.

Clear Communication is Key!!

During this week.....

the one with Valentine's Day,

and Hearts, and Cupids,

and Chocolate, and Flowers,

and anything else which might be marketed to men who feel obligated to swoon their sweeties with gifts and kisses.....

I thought that the importance of clear communication in a wide variety of relationships should be addressed.

Even at work.....

"A co-worker got a pen stuck inside our printer. He started to try and remove the pen, but I told him we don't have time for that now, just put a note on the printer telling folks not to use it and then report it to the Help Desk. So he grabbed a piece of paper and scrawled on it. I left before he finished the note. About 20 minutes later, one of the techs comes in laughing and says he was just in the lobby, saw a piece of paper on a printer and went to investigate. Attached is what he found.

Sometimes things don't always come out the way you want them to...."

Now that you've smiled at least once, maybe even chuckled, it's your turn to spread the stupidity and make someone else smile.

[A friend sent this message in an email to me last year. Although I believe it has been traveling cyberspace for years now, I still think that it's worth a chuckle. Please forgive me for being a bit of a 'bad girl.']

Fear and Anxiety - What are your dreams?

When I was little, music was always part of my life. My parents were young and started college part-time when I was around 4-5 years old. They both pursued undergraduate degrees in music education and I was present for many rehearsals and concerts during those years.

My mother graduated at the very top of her class in 1979 from Central State University (now University of Central Oklahoma), the very same summer I entered puberty. I remember being so upset that my secret had been told when my grandmother and aunt came over to our house to congratulate me on entering womanhood. This all happened when my mother was only 29 years old...10 years younger than I am now.

Don't go telling my secrets.

For as long as I can remember, I always played the piano. Obviously there was a time that I didn't, but I don't recall that time. My mother says that I often tinkered on the upright Baldwin piano they purchased after starting college. The academic advice at the time was not to have a child learn to read music at the same time he/she was learning to read words. So I did not begin taking piano lessons until I was 7 years old and reading quite well. But once I did, I would practice for 2 hours every day while my parents had to pull me from the piano in order to complete their homework. In 6 months, I was playing the familiar "Minuet in G" by J.S.Bach. Alas, my students take much longer to proceed to that point.

So would you imagine that someone with such love and dedication in playing piano might ever experience anxiety before performing? Well, I did although I didn't understand it at the time.

I used to have this dream where first I would have a broken toe, but it was okay because it was my left foot and I didn't need it to perform. Then the dream expanded and I had a broken leg, but it still was okay because I could still play. Then it was a broken arm, but okay because I could still move my fingers over the keys. Then a body cast, but still okay. But then it was my hands, and finally I conceded that maybe...just maybe...I couldn't play that day and I would finally wake up in a sweat. But when I performed there was no clue that I was nervous...ever; and my mom admired my 'cool as a cucumber' demeanor.

The anxiety inside - nobody knew.

During my first experience with optic neuritis in 2000, I was performing backstage for the opera "Tannhauser" with the Baltimore Opera. With my vision completely gone in my right eye and suffering from the prednisone prescribed, I was unable to drive so I carpooled with a violist, husband of a horn player in the National Symphony Orchestra. In "Tannhauser," the backstage horns only play in the first Act and then over 2 hours later near the final scenes. I had lots of time to rest and talk with other backstage folks, one of which was another hornplayer whose mother has MS. So we talked alot. I was not afraid of MS at the time because my MRIs had come back clear for any 'evidence of demyelinating disease.'

I was safe.

But 5 years later when my left hand was behaving irradically, was numb, felt like pins and needles, and fatigued quickly, I was concerned for my music. I had just performed Debussy's "Arabesque No.1" at the end of my students' annual recital and was mortified because I felt my performance was terribly off, although I still received many compliments. I have since listened to the recording and I was correct - it was pretty bad.

Two months later, I was visiting with a neurologist after MRIs and a radiologist's report listed MS as a differential diagnosis for the lesions and inflammation in my cervical spine. There were bloodtests, a spinal tap positive for o-bands, and a round of IV steriods. I remember crying to my dad that, "my hands aren't mine!!"

One of my greatest fears - not having my hands any longer.

When my left hand lost it's grip strength and my fourth finger went limp as a noodle, I was.....upset. I had to convince my new neurologist that this was not acceptable and that I had to do something about it. So I found an occupational therapist who specializes in hands and together we worked hard to build new neuro-pathways to my hand and fingers. After 2 months of very hard work, I began to have my hands back and feeling hope for living a life with MS.

Only a year later, I again lost my hands but this time they were on fire and crippled into stiff fists. I thought MS? but my neurologist said Carpal Tunnel Syndrome. After EMG (electromyelography) and 3 months of failed conservative treatments, I was sent to the hand surgeon for evaluation. He injected both wrists with steriods and thankfully I began to have my hands again. The surgeon is the one who recommended getting the opinion of a rheumatologist who at our first visit said I definitely have rheumatoid arthritis. She conducted an in-office ultrasound of several joints which showed great inflammation and the beginnings of joint erosion on my left hand.

Once again - I just wanted my hands back!!

When you have multiple sclerosis, sometimes you just want back what you used to have - what you once took for granted. Maybe it's your balance, your eyesight, or the absence of shooting pain. Perhaps the fear of permanently losing what you love and treasure causes much fear and anxiety. Maybe it's your career, your independence, or your financial security.

With such variety of unpredictable symptoms, who wouldn't be fearful?

Bladder Dysfunction
Bowel Dysfunction
Changes in Cognitive Function
Dizziness and Vertigo
Depression and other Emotional Changes
MS Fatigue
Difficulty in Walking and/or Balance or Coordination Problems
Abnormal sensations such as Numbness or “pins and needles”
Pain
Sexual Dysfunction
Spasticity
Vision Problems
Headache
Hearing Loss
Itching
Seizures
Speech and Swallowing Disorders
Tremor
and on...and on...

Each growing fear and each moment of anxiety related to losing my hands and my music has led me to contemplate what exactly I would do if I could no longer play or teach. Although it would be devastating to permanently lose use of my hands to MS or RA, I hope that I have become much more than my music over the years.

I dream of always being able to find ways to adapt to my current abilities and to cultivate those abilities unknown as of yet. This blog has provided me with an opportunity to contemplate the possibilities which may come my way in the future.

I dream of being the same me in years to come - no matter if I couldn't walk, or see clearly, or think straight, or play piano, or control my bodily function.

I dream of - ME.

MS Carnival #4 - Submissions Due

"A gathering of MS Bloggers sharing thoughts, opinions, news,
and inspiration around the Blogosphere."

It's time to prepare for the next Carnival of MS Bloggers and to feature the best of the MS blogosphere. When submitting your post, please include:

• Your blog's URL
• Your post's URL
• Brief summary of the post

Submission Deadline - Tuesday, February 12, 2008 (noon)

You may submit via Blog Carnival or email.

Participating is Easy!!

If you are a blogger with MS or someone who blogs about MS, you are invited to participate. Here's what you should do...

• Choose one of your best posts from the past 2-3 weeks
• The topic does not need to be limited to multiple sclerosis
• Submit the post for consideration in the next Carnival edition
• Be sure to include a brief synopsis (or summary) of the post

When the Carnival is published, you will receive an email from me that the edition is available. Then post an announcement on your blog (in a separate post) that the Carnival is available, including a link back to the specific edition.

Let the community grow!!

Also, if you'd like the code to the Carnival Button simply send me a brief email, or try copy/paste with this button and place it on your sidebar.

Health Wonk Review is Hosted at the Health Business Blog

This week's Health Wonk Review is hosted by David Williams of the Health Business Blog. He highlights more than 20 wonkery posts from around the health policy sphere, including my $7000 drug-ery post. Go check 'em out.

Who do you tell, when do you tell, and why do you tell others you have MS?

Multiple Sclerosis is a mysterious disease.

The cause is still unknown although there are some 'autoimmune' theories. The progression of the disease is unknown for an individual patient.

What happens to one patient does not happen to all patients.

The impact of MS on your life is unknown at the time of diagnosis. The impact of MS on your relationships and ability to protect your financial security is feared by most patients at the time of diagnosis.

Fear may be the one thing which uniformly affects MS patients.

So with all of the mystery, the vast unknowns, and the looming fears, multiple sclerosis remains a disease not well understood by those unaffected and not well represented by those affected.

"You don't get MS until you get MS," so the saying goes.

In a very real way, MS can be an invisible disease without a public face; and with the use of the recent disease-modifying drugs, fewer MS patients end up in a wheelchair or severely disabled. However, the National Multiple Sclerosis Society is working to put a face on MS through FaceofMS.org.
[I have not put my face or story on their wall, but I should.]

Fear of the future + fear of repercussions

= Silence about the disease

So to our questions:

The First String Players:

Who do you tell?

Certainly those closest to you should know - your immediate family - your fiance - your other doctors - a trusted friend??!!!

When do you tell?

Perhaps after the diagnosis is confirmed - at your next (non-neurologist) doctor's appointment in the 'any changes since our last visit' time - and for children, when you feel it can be understood without too much fear - and most importantly when you are ready!

To help children, the National MS Society publishes Keep S'Myelin, a colorful newsletter filled with stories, interviews, games and activities that highlight a variety of topics about MS. The Society also offers an interactive version of Keep S'Myelin online. Go check it out.

Why should you tell?

As humans, we each have a deep need to be known, to be liked and to be loved for who we really are.....a need often not satisfied. The ability to be yourself, to be genuine, to be unguarded and not to have to play a role is one of the most treasured gifts you can award yourself. Although this type of openness and understanding can be lacking even between husband and wife or parent and child, those are the very relationships where the need to be truly known is the most intense.

When one family member has MS, the family lives with MS. Engaging members of the family in sharing household burdens is an absolute must, ie. children can take more responsibility for laundry or preparing food. An appreciation of the physical and emotional issues which the MS patient may be experiencing is necessary in approaching this disease together.

One goal. Many hands. Share the Burden.

Having good friends who know about your MS can be essential. A support group of people who share similar concerns, or peer counselors (kinda like some of the friendly MS bloggers around here) can provide relief, understanding, and direction.

The Second String Players:

Who do you tell?

Friends, co-workers, or maybe your boss. But keep in mind that once the 'secret' is told, it is impossible to un-tell it.

Consider this, if you wish to encourage co-workers to walk with you in the MS Walk (or with Team Brass & Ivory), it is not necessary to reveal that you are the one with MS. If people ask, you can always say that you have a very dear friend who has MS and you are doing this for him/her.

When do you tell?

Only when you are ready and prepared!!

If your MS has not created any limitations for you, you may decide to say nothing at work. But if you feel confident that disclosure will not be used against you, and that telling your boss and co-workers would be better for you than remaining silent, then you should tell.

Why do you tell?

Before disclosing your MS, you should weigh carefully what your disclosure will be. An employee (or job applicant) does not have to give a diagnosis. It is acceptable to describe your problems as being due to “a medical condition.”

If your job performance is threatened by your symptoms—for example, if you need time for a nap, or a workspace near the bathroom—then you need to seek an accommodation. Under the Americans with Disabilities Act (ADA), most employees are guaranteed workplace adjustments, as long as the accommodations don’t present an “undue hardship” for the employer.

Be aware that ADA protections apply only when the employee discloses disability-related problems on the job. With or without full disclosure, the employee has to discuss the problems in order to obtain accommodations. It is up to you, the employee, to find out with whom to meet for this discussion and to request a meeting. You must be ready to suggest the possible solutions as well. Be prepared!

The Out-Fielders:

Who do you tell?

The lady next to you in the checkout line at the grocer's? Other parents at your child's school? How about the World?

Why do you tell?

Perhaps you wish to lift the veil shrouding the vague image of a person living with MS. Perhaps you seek to become an MS advocate and to help newly-diagnosed patients who need support and comraderie. Perhaps you just don't like keeping 'secrets' and think nothing of sharing information with others. Maybe you fear not being known for what makes you...you?

After I was finally diagnosed in October 2005, one of the first things I did was to send a newsletter to my students' families explaining the diagnosis and reassuring them that I would continue to teach as usual although I might need more time off. Many of these families have known me long enough to know that something was going on with me. I am not one to cancel things at the last minute and due to overwhelming fatigue, emotions, and not fully recovered from the last relapse, I was doing just that. The response I received was both touching and enlightening.

1. I discovered that the father of one of my horn students has MS, takes Betaseron, is blind in one eye, and has been living MS for over 20 years.

2. One father told me how brave I was to reveal my diagnosis. He has a connective tissue disorder and has not told his co-workers though he does need to be cautious with his environment at times. He invited me to participate in a monthly support group at his church for persons living with a chronic illness.

3. One mother told her children that I was 'sick' and has them pray for me every night, but she didn't tell them that I have MS. They only knew that I was 'sick.' She didn't want to frighten or worry them.

4. One dear mother was tearful when she gave me a letter written to myself and the flute teacher of my piano student. The flute teacher (also a band director) has MS and uses a scooter named 'Red Ruby' to navigate the long halls at school. This mother was sad that two of the treasured people in her life had to fight this terrible disease. I ended up consoling her and then contacting the other teacher. She was nice to speak with.

But I did not tell my fellow musicians for fear of prejudice. When I needed a rigged-up strap to hold my horn when my left arm was too weak, I claimed some 'nerve problem' when asked about it. When I had just completed a round of IV Solumedrol and had to play an orchestra fundraiser, I 'hid out' on 4th horn and basically went through the motions.

After a year or so I became comfortable enough to reveal my MS to a few hornplayers while playing a concert series at the National Gallery of Art. Unfortunately, one of the players was someone who also played with the Fairfax Symphony (one of the groups I had performed with for over 6 seasons), I haven't been called to play with them for 2 years now.

When do you tell?

Think carefully...when you are ready?!!

When you are able to take MS in stride and accept it as being part of your life, for good or ill, then you may be better prepared to reveal your 'secret.'

But most definitely, if you are applying for a new group health insurance policy, do not lie on application form. You will automatically disqualify your new insurance policy. Answer the questions asked truthfully and accurately.

The whole world doesn’t need to know...

unless you want them to know.

A future post will address the emotional uncertainty of MS from a patient's perspective.

Joshua means "Yahweh (God) rescues"

Today I am sad...

This is Joshua.

My dear old friend.

My companion.

He is 19 years old

and he is dying...

He stood by his water bowl today and meekly meowed...

He was sick Sunday night with massive diarrhea and today the vet says that his intestines, kidneys, and liver are shutting down.

I'm not ready....so he is receiving IV fluids, some glucose, and an appetite stimulant. Since his circulation has slowed down his thyroid meds (delivering transdermally on the ear) have not been absorbing well and puts more strain on his heart.

After a day in the kitty infusion center, he will come home with me. If the fluids and meds do not help at this time, it will time for me to let him go.

My friend who...

...entered my life before my senior year in college at the University of Oklahoma.

...is named after an angel who touched the life of someone I once loved.

...dialed 911 (speed dial on a speaker phone), summoned the police, and scared my roommate.

...would like to ride on my shoulders while traveling to and from campus on weekends.

...learned how to travel 5.5 hrs in the car when I was at Baylor University.

...was lease-trained and loved to roam the courtyard at my apartment while being hooked to a post. He enjoyed the sun and grass so.

...was afraid of the clarinet after a fellow graduate student played in my apartment. However, he enjoyed listening to my horn until he got jealous of it and would sulk in the bedroom while I practiced in the livingroom. [It's hard to imagine now, but my rent in Waco in 1990-1992 was only $275 a month...about the same rate which my parents' mortgage payments were for the home they bought in 1979. I can only dream.......]

...loved to jump into the linen closet at my parents' house and play with the door. This was practically the first thing he would want whenever I visited my folks during school breaks. He would run down the hallway, stop in front of the linen closet until I opened the door, jump in and either play or curl up in the back on top of the towels and take a nap.

...didn't really like traveling to Bloomington, IN after I moved there to work on a doctorate in music at Indiana University. However, we did seem to work out a routine which alleviated his anxiety a bit on those 13-hours journeys.

...has flown on airplanes numerous times and took it in stride.

...learned to 'bark' like a dog after a neighbor moved in with a young dog. Joshua would go towards the door and make a meow/bark noise which was part 'hump' and part 'mmreow.'

...learned to climb the concrete trellis in front of my apartment door and go up to the second floor. But then he would meow loudly because he was stuck and needed for me to come rescue him.

...would not chase mice, drink milk, nor eat tunafish. But he likes to eat raisins, chew lettuce, and bite on rose petals. And I did witness him eating a cricket he had been playing with once.

...has now lived in three homes here in northern Virginia where he is always the king of the manor. He has us trained, especially me, to get up - go to his favorite spot in the livingroom - reach down to pet him while he rubs his head in a crinkly plastic bag. Aw, that's heaven.

...has been a part of my life longer than any other non-relative out there.

But for now, I have to give him a chance with fluids and care.

His spirit is strong though I am sad.