Thursday, April 28, 2011

Money Spent on MS Drugs Continues to Rise, But Do You Know How Much?

Just a couple of weeks ago, Express Scripts (pharmacy benefits management company and mail-order pharmacy) released their 2010 Drug Trend Report.

Within this drug trend report was information specific to specialty medications such as those used for multiple sclerosis and rheumatoid arthritis.  In 2010, the amount spent on specialty medications (through the Express Script pharmacy benefit management programs) increased 19.6% as compared to the amount spent in 2009.  The top three disease categories which use specialty medications (inflammatory conditions, multiple sclerosis, and cancer) made up 68.3% of the total amount spent on specialty drugs as compared to 66.7% in 2009 and 63.7% in 2008.  22.9% was spent on MS drugs alone.

The total amount spent on MS medications increased 25.4% from 2009-2010.  The amount had increased 34.4% from 2008-2009 and 18.3% from 2007-2008.  The result is an amount spent in 2010 on MS medications which is double what what spent in 2007.  Double in three years.  If forecasts are correct, the amount spent on MS drugs will more than double again in three years. 

Much of this increase is due to an increase in the price of each medication.  The price for Copaxone was increased 19% according to the 2010 Drug Trend Report, while utilization for MS drugs is actually decreasing slightly.  It is not expected that the introduction of new medications will cause prices to go lower and we’ve seen this already with the introduction of Gilenya in September 2010.  The market response to Gilenya’s $48,000 price tag was an increase in price of other MS medications, not a decrease (see The Rising Price of MS Disease-Modifying Medications)

Read this post in its entirety, including details in the lengthy commentary:
MS Medication Costs Increase 25.4% in 2010

Wednesday, April 27, 2011

Service Dogs for MS Patients - MS Beyond Meds

Conversations on the blog often circle around issues directly and indirectly related to quality of life.  We talk about what symptomatic treatments can help with certain MS-related annoyances.  We talk about what MS disease-modifying drugs we should take (if any, in our particular cases).  We have even talked about the benefits of physical therapy, social interaction, and caregivers.

One thing which we haven’t discussed on the blog (but which has been discussed in previous editions of the Carnival of MS Bloggers) is the benefit of service dogs to people living with MS.  According to The Service Dog Academy, “Services dogs have proven themselves effective in helping those with disabilities live independently in their own home, reduce their need for medication, become more social and return to school or employment.  Service dogs help those with physical handicaps live like able-bodied people again.  Trained service dogs are becoming the alternative solution to putting a loved one in a nursing home or paying for caregivers. Although the initial costs of training a service dog can be high, the cost savings of independent living is enormous.”

Do you or someone you know living with MS have a service dog to assist with mobility- or independence-related needs?  I know that a couple bloggers in our MS community have discussed the benefit of their own service dogs.  But there is room for much more awareness and support (financial and social) to recognize the need to provide dogs to those who would most benefit.

How do we spread awareness on the topic of service dogs for people living with MS?  We talk about it.  We discuss our experiences and opinions.  We participate in carefully controlled research to quantitatively show the benefit of dogs to their owners.

Step in a new project called MS Beyond Meds (or simply msbeyondmeds).   Joanne Gruskin and Dr. Elisabeth Gruskin (mother and daughter collaborators on previous research projects) have established this group to explore the benefits of service dogs to people with MS.  Here is their mission statement:
We aim to help people with MS improve the quality of their lives.

MS has been treated with a variety of meds for years.  Meds can help slow down the progression of the disease and help with some of the symptoms, but they don’t really directly address quality of life issues.

Meds don’t help us feel better about ourselves.

In addition to massage therapy, yoga, meditation, mindfulness, exercise, diet, and a good dose of positive thinking, we know service dogs can make a measurable contribution toward improving quality of life.

We at msbeyondmeds have witnessed real changes in MS patients as a result of their partnering with service dogs.  We intend to open a dialogue among the MS population, the medical community and friends and relatives of those with MS via our blog and website.  We hope to prove to medical insurers that service dogs contribute measurably to improve the quality of life with MS, thereby potentially reducing medical costs.  We must convince medical insurers and government agencies to cover the costs of service dogs.

We invite you to participate in our dialogue, share your experiences and support each other.
As with any new organization, msbeyondmeds needs our help.  They would love for people to share their stories on their blog and facebook page.  Joanne says that their immediate purpose is “to raise awareness so that [they] can prove the topic is interesting and important enough” to the community, to demonstrate the need for research into the subject, and to eventually write a book. 

The next step for msbeyondmeds is to fundraise and apply for grants to support necessary research to demonstrate the needs, benefits, and reasons for financially supporting and providing service dogs to people living with MS.  Insurance does not cover the expense and patients must turn to charities and non-profits for help with obtaining and training these special animals. 

Although initial funding for msbeyondmeds is desired at this time, awareness is more important.  So please help spread the word.  Visit the website, blog, and facebook pages.  Follow @JoanneLG and msbeyondmeds on Twitter.  And if you have a service dog which helps you maintain mobility and independence, please tell Joanne your story.


Additional information I found regarding service dogs and MS:
Guide and Service Dogs - VA Multiple Sclerosis Center of Excellence
Service Dogs for Multiple Sclerosis? - ARK Animals
Service (assistance) dogs for person with mobility impairment - MIRA Foundation
Assistance Dogs International (USA)
International Guide Dog Federation (UK)
Service Dog Academy

This list is not exhaustive nor is this an endorsement of any organization mentioned.  It simply provides a start for additional research and reading.  Many stories of patients and their dogs can be found online with a quick search.

Tuesday, April 26, 2011

April 30, 2011 - National Prescription Drug Take Back Day, Dispose of your Excess Medications Safely

According to the Food and Drug Administration (FDA), most drugs can be safely thrown in the household trash under certain conditions (ie. crushing first and/or combining with kitty litter or coffee grounds).  The FDA recommends that a few drugs should be flushed down the toilet or may be disposed of down the sink (a current list can be found here).  Another option is the periodic community-based “take back” programs which are becoming more common.

2nd Annual National Prescription Drug Take Back Day, April 30, 2011

As unwanted and unused prescription drugs can pose a health risk for abuse, the National Drug Enforcement Agency joined forces with approximately 3,000 state and local law enforcement agencies in September 2010 for the first National Prescription Drug Take Back Day.  More than 121 tons of pills were turned in on that day by millions of people and the effort is being repeated next week.

This is a great opportunity to safely dispose of your excess prescription medications which are collecting dust.  Locations throughout the country will be accepting your excess medications from 10:00 am - 2:00 pm on April 30, 2011.  Find a collection site near you.  I discovered that there are more then 20 drop-off locations within 10 miles of my home in the suburban DC area.

Read this post in its entirety:

National Prescription Drug Take Back Day, April 30, 2011

Sunday, April 24, 2011

Sunshine and Strong Growth

Good morning and Happy Easter! 

It's a glorious day here in the Washington, DC, area.  Spring has had a difficult time rolling in, with way too many gray and cold days and a few random really hot day (ie. 89 degrees Fahrenheit one day last week).  It's really nice to finally have blue skies, listen to the birds chirp, and soak in the sun's glow.

Also happy are the plants.  Unlike me, they have probably loved all the rain and cooler temperatures we've been getting.  The Lilac bushes out front have bloomed and are sending out their gentle bouquet.

In the back yard, our Dogwood tree is looking very snowy in the sunlight  with too many blooms to count.  This beautiful tree was such a shy, sad tree without much show when we first moved into this house.  In 2001, there were literally three blooms to count on the tree while it stood taller than me.  The following year, it was not much better.

What happened from then to now?  Well, in 2003, hurricane Isabel rolled through here and created havoc with many larger trees in the yard.  As a result, we had to have five trees removed around the house.  One of those was a humongous Huckleberry tree which stood towering above this little guy, our deck, and much of the yard.  The Huckleberry tree also created a mess each year.  I'm sure that the birds loved the fruit, but my goodness if those berries didn't stain anything they touched and perhaps provided a bit too much shade for the yard.


After removing the giant of the yard, this little guy was able to get some sunlight. Now there are too many blooms to count.  Isn't it gorgeous?  The Dogwood just needed to have some light shined upon it in order to grow and become strong. 

Sometimes we have have to step out of the shadows and let the light shine upon our faces so that we can become what we were meant to be.

Friday, April 22, 2011

Carnival of MS Bloggers #86

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

past, present, future

by stephen of one life: livin' the dream

i read about – on facebook i think – an organization, most likely an organization of women – who volunteer to come to the homes of other women with breast cancer and clean their houses. i imagine they offer to do other necessary chores that these women who are suffering through the ravages of breast cancer are not able to get to – shopping, whatever.

this is a wonderful thing. i feel a little (maybe even a lot) sheepish and guilty for not having offered my services and my able body (back when i had one) to people i knew or knew of, who were in need of simple things like household chores – lawn mowing, odds and ends of carpentry, whatever i could do. granted, i have never been a real handy guy, but i know how to put up a grab-bar or vacuum a carpet or clean a bathroom.

and i know that the women being served by this service are in need of the support, but probably don’t, for whatever reason, to ask for it. i know when my daughter was desperately ill many years ago, i was at first reluctant to accept, and then very glad to receive, a week or two of dinners prepared and delivered to me by friends. not something i would ever have asked for, and something i didn’t even know i needed.

this has gotten me thinking about service, and i wish to heck i had thought of this when i still had the capacity to offer my own service (maybe i still do, but haven’t yet thought yet of what it could be). i wonder why this needs to be an organized service. why don’t people who are able, who know people who are not, simply show up at their homes and wash their kitchen floor, or clean their bathroom, or even just tell them to get in the car and come for a ride, get a cuppa, or just take them to a park and sit on bench with them – get them out of the house. all without waiting to be asked. why didn’t i?

again, i feel badly that, when i had the ability to drive, i never did this for people i knew of who’s lives could have been improved, even for an afternoon, by such a simple act. it seems to be part of being human. there are people – and i admit i am one of them – who can clean their own bathroom, and can get themselves out of the house, but who feel stymied by the fact that, though they can do these things, they now require substantially more energy than they used to. i can wash my kitchen floor, but it takes me four times as long as it used to, and wipes me out.

so i am largely berating myself here for not being as caring and generous and thoughtful a human as i easily could have been, when i could have been. and imploring my other fellow humans to step up and be human. and i will search for, and be wide open to suggestions for, how i can be of service to others who’s needs i can fill.


by Judy of Peace Be With You


So I made my bed.
Things weren’t perfect but I said,
This is good enough.

My exhaustion blunts
meeting fully my ideals.
I just can’t get there.

I have to adjust
—though I sure as hell hate it—
and do what I can. 


by Dan Digmann

Like most others worldwide, my prayers went out to the people who absorbed the unimaginable earthquake- and tsunami-induced devastation in Japan.

Intense images from there triggered aftershocks in my heart that was beating half a world away from the epicenter:

• The man in a business suit high-stepping his way into the street to avoid the falling office building debris

• The river of vehicles raging with the flood that flattened and consumed a once-thriving city

• The little boy in a makeshift shelter walking around desperately clinging to a photograph hoping someone could direct him to Mom and Dad

But unlike most others worldwide, I took one part of the media reports personally. Very personally.

Several times the media reported how regions of Japan had diligently prepared for such situations. Buildings were constructed to withstand the earth’s initial and follow-up seismic shifts. Communities exercised monthly tsunami warnings to get ready for when Mother Nature unleashes her fury.

In the end Mother Nature didn’t care, and I began wondering how is my MS any different?

I realize in a way I was comparing apples to oranges, but it’s hard to argue against the parallelism. Like the people and regions of Japan, I’m diligently fighting the devastating effects of this disease. I’m taking my disease-modifying medication to decrease the frequency and severity of MS exacerbations. I’m eating well and exercising regularly to stay in shape and keep moving in case the mega exacerbation ever hits.

In the end MS doesn’t care and, like the earthquake and tsunami, it’s going to do whatever it damn well pleases.

And this isn’t a call for me to give up and quit trying. It’s a charge for us all to continue what we’re doing and fighting like hell to keep this disease in check. We can take measures to take charge of the things we can control such as our attitude, our gratitude, our diet, our faith, our spirit, and so much more.

In the end I do care, and if the big one ever comes I hope that I, like the people of Japan, can spend less time looking back at what I should have done differently and focus more on looking ahead at what I can do to keep moving forward through the aftermath.

Whether it’s last month, last year or five years from now, it all starts with today.


by Judy of Peace Be With You


I admit I have
a special place in my heart
for young MSers.

Struck down in the dawn
of enjoying adulthood,
their promise flickers.

Here’s what I told one:
don’t underestimate hope.
It does have power.


This concludes the 86th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 5, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 3, 2011.

Thank you.

Comments for this post.

Thursday, April 21, 2011

Tyasbri-related PML deaths holds steady at 20%, 111 total cases of PML reported to date

Although good news has been reported regarding a blood test in development by Biogen which tests for antibodies to the JC virus, the presence of which contributes to the development of PML (progressive multifocal leukoencephalopathy) in patients using Tysabri to treat their multiple sclerosis, a steady stream of bad news regarding cases of PML continues to emerge each month.

This month is no exception.  Nine new cases of PML (a rare brain infection) have been reported in patients using Tysabri.  This brings the total up to 111 patients.  Of those, 22 patients (or 20%) have died.  The condition of the remaining 80% is mostly unknown, however a group of patients and family members affected by PML have gathered in Facebook.

The statistics on the risk of developing Tysabri (which changes according to how many infusions one receives) is as follows:
"The most-recent data translate to a rate of 1.99 cases per 1,000 patients on the drug for a year or longer, rising to 2.5 per 1,000 for those on the drug for two years or longer, and dropping to 1.4 for more than three years." 
The FDA has officially updated the label to include:
  • A table summarizing rates of PML with Tysabri use according to the number of infusions (how long the drug is taken or duration of exposure).
  • Information on a newly identified PML risk factor. Patients who took an immune system suppressing medication (e.g., mitoxantrone, azathioprine, methotrexate, cyclophosphamide, mycophenolate) prior to taking Tysabri have been shown to be at an increased risk for developing PML. The Tysabri label already warned that using immune system suppressing medications at the same time as Tysabri may increase the risk of developing PML.
It is the fact that I have taken and continue to take methotrexate which prevents me from considering Tysabri for myself as a treatment option.  I first learned of this association from other patients in MS forums more than two years ago.  I'm glad that this information has finally been included officially in the labeling of Tysabri.

Please know that I am not anti-Tysabri.  I am in fact pro-medications-which-help.  Tysabri indeed does help many patients.  I just want to let you know the most recent statistics and reports.

Here is the updated chart including April 2011 data which outlines the number of PML cases reported publicly.



The WSJ report is republished below:



9 new cases of brain infection in Tysabri MS patients

Biogen Idec Inc. has reported nine more cases of a rare brain infection among multiple-sclerosis patients taking Tysabri, sold with Elan Corp, bringing the number of affected patients to 111 as of April 1.

The Weston, Mass., biotech company reported that one more of those patients has died, bringing total deaths to 22. The cases of the infection--known as progressive multifocal leukoencephalopathy, or PML--are closely watched as the MS market becomes increasingly competitive.

The drug is generally regarded as highly effective, but mostly used for patients that have stopped responding to other drugs or have aggressive cases of the disease.

Biogen is developing a blood test to test for antibodies to a specific virus, JC virus, something that may better determine the chances of patients contracting PML. The test recently received CE Mark approval in Europe and the companies are conducting large studies of its effectiveness.

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

European regulators recently recommended the label include language indicating that JC virus antibody status is a PML risk factor. In the U.S., Biogen and Elan have proposed making a similar change.

Also recently, the U.S. label was updated to include the updated incidence of PML.
Regulators monitor cases of PML as they occur and have said that the benefits of the medicine outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006--because of its effectiveness--with a strict access plan that monitors patients.

The overall global PML rate is now at 1.31 per 1,000 patients. Of the total PML cases, 46 were in the U.S., 59 were in the European Union and six in other areas.

The risk of the infection generally increases with the number of monthly infusions that a patient receives, but that rate appears to drop after 30 months. Biogen is studying this drop and has warned there is limited information from patients on the drug longer than 36 months.

The most-recent data translate to a rate of 1.99 cases per 1,000 patients on the drug for a year or longer, rising to 2.5 per 1,000 for those on the drug for two years or longer, and dropping to 1.4 for more than three years.

Looked at another way, the rate is about 1.74 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.48 case per 1,000 patients in those using it for one to two years, and it is essentially nonexistent in patients using it for less than a year.

Source: The Wall Street Journal Copyright ©2011 Dow Jones & Company, Inc (21/04/11) by way of Multiple Sclerosis Resource Centre (MSRC).

Tuesday, April 19, 2011

Historic Family Ties and Innovative Music Performance

This past weekend I traveled to Thurmont, Maryland, to meet some distant relatives.  One of whom 'found' me online and invited me to the family gathering of descendants of Johann Daniel Weller (1677-1761).  Although the weather was gross, we were able to see several historical locations in and around town, including the graves of my 6th great grandfather and grandmother who were original settlers of the area.  I will be sure to share some of what I learned and saw soon.  I'm still recovering from the weekend.

In the meantime, please take a moment to sit down and relax to the sounds of this multi-talented cellist. Thanks Stephen for sharing this link on FB.

Sunday, April 17, 2011

"It's All in the Blog!"

On Wednesday, April 20, 2011, Amy Gurowitz of MS-Life of Learning will be hosting the blog radio show at 8pm Eastern or 5pm Pacific.

Guests include:  Marc Stecker, the Wheelchair Kamikaze, and ME!!

Join us by calling (714) 510-3712 or the toll free number 1 (877) 552-4068 and press 1 to listen to the show.

*Too shy to ask questions? Skype or IM us! (skype: mssoftserve, IM: mslolradio)

I look forward to talking with you on Wednesday!

Saturday, April 16, 2011

"Navigating Your Health Narrative"

Exciting event scheduled for this Thursday, April 21, 2011 at 8pm Eastern or 5pm Pacific. WEGO Health is hosting a first of its kind (bringing together some awesome chronic babe bloggers) to discuss blogging, advocacy, and more.

Please Join me, Jenni, Erin, and Amanda for an exciting hour.  We've already received several submitted questions.  What would you like to ask?


What: Navigating Your Health Narrative Webinar

Who: the Health Activist Panel includes Lisa from Brass and Ivory: Life with Multiple Sclerosis and Rheumatoid Arthritis, Erin from Healthy Unwealthy and Becoming Wise, Jenni from ChronicBabe.com, and Amanda from WEGO Health

When: Thursday April 21st 8 p.m. EST/5 p.m. PST

Where: click here to get all the details

Description: The webinar is for anyone from seasoned bloggers to blog-readers who want to start their own blog. The webinar will cover the basics of blogging and include more advanced tips and tricks for promoting posts, managing your time, and establishing your blog “voice” and how to raise awareness about your condition through blogging.

When you sign up, you get a chance to submit questions for the panel which will be answered during the live question and answer portion of the webinar. Plus you'll get access to the archived version of the webinar so you can listen to it again in case you miss anything during the live event.

Did I mention that this event is free of charge? Or that you can participate either by using your telephone or your computer's speakers and microphone?

Free, informative and interactive -- three great reasons to join me on April 21 for the WEGO Health webinar Navigating Your Health Narrative.

Friday, April 15, 2011

Listen to the Patient and Let Him Lead the Way

Last week I attended The Atlantic's 2011 Health Care Forum in Washington, D.C.  You may have read about my experience traveling there on the metro (see Excuse me please, I need a seat).  Read more about the day's event at HeathCentral where I discuss the need for organizations, companies, and government to listen to the patient.

Improving healthcare is about more than increasing compliant or adherence.  To begin to change the system, patients must get involved in their own care.  Patients must be given a voice in stage at conferences such as the one last week.  It is being done, but we can't stop there.  Patients and medical professionals need to work together for better outcomes, and that means so much more than just being convinced to take your meds on time and consistently.

I know that I am helping other MS and RA patients be healthier as a result of our communications online.  The information and support we give each other is powerful.  Just imagine how healthy our society would be if the "healthy" people took as much interest in their own well-being as we do.  A shift in thinking needs to occur.


Read this post in its entirety:

Utilizing Patients: Participatory Medicine and Health Care

Thursday, April 14, 2011

So Much Going On, What to do First?

Do you ever feel like there is so much you need to do but that it becomes paralyzing?  I'm beginning to feel that way lately.  So many commitments coming up that I must prepare for.  So many posts/article to write.  Preparations for performances and interviews....

Next week there are two shows/webinars in which I will be a featured participant.  I'll be sure to remind you about those again.

This weekend I will get to meet some distant relatives one of whom found me through an online genealogy service.  Her father and my grandfather were cousins raised in the same home.  She will be introducing me to some other relatives named Weller who were prominent settlers of land not too far from here.  In fact, I'm told that the Wellers owned the land which is now Camp David in Maryland.  I'm sure that I'll hear lots of stories this weekend.

Yesterday a book arrived on my doorstep.  I'm very anxious to read the book which is an autobiography (Chopin and Beyond: my extraordinary life in music and the paranormal) because I will be interviewing the author for an article at MyRACentral next month.  I'd like to be as prepared as possible.  Get this - the interviewee is a famous concert pianist.  I mean seriously famous and one of the great American pianists of the 20th century.  He is Byron Janis.

Besides being one of only three students that Vladimir Horowitz ever taught, performing for several presidents at the White House and representing our country abroad, performing from a young age and for many decades, Byron Janis develop psoriatic arthritis in the mid-1980's.  He continued performing while hiding his arthritis for many years.  He is now an ambassador for the Arthritis Foundation.  Am I feeling a bit intimidated?  Absolutely.

Then there are the students who are performing at another solo festival in two weeks.  I need to rehearse and practice.  This is followed by the big annual studio recital on Mother's Day.  Usually I perform a selection as well, but so far this year I don't yet have a clue what I might pull out of the finger archives.  Time is just speeding by so quickly....Yikes1!

So what do I do about it?  I'm sitting here typing this while I should be working on any of the above tasks.  Maybe I should go.  Talk to you again soon.  I promise.

P.S. My baby girl, Musette, has requested a firm back scratching (she's very itching cause it's the season for shedding) and wants to play.  I believe THAT is what I will be doing first.  :)

Wednesday, April 13, 2011

Do You Ever Feel Guilty When Your Health Is Good?

Life is unpredictable.  Living with an unpredictable, chronic, and degenerative disease such as RA or MS can be quite emotional.  The emotional roller coaster can be smooth at times or sometimes quite jerky and dangerous.  Lene’s recent post, Acceptance and RA: All Tangled Up in the What Ifs, illustrates that point well.

When life with RA keeps us from being able to do things, we might feel guilty.  Maybe we wish that we weren’t disappointing others, or even more likely, we sincerely hope not to disappoint ourselves.  A powerful feeling involved in this disappointment is GUILT.

Guilt can be insidious.  It serves to keep us down and tends to worsen our impression of its root cause (no matter what that cause, external or internal).  I’ll boldly say that most of the time we make ourselves feel guilty even when our loved ones are supportive and wish the best for us.  We feel guilty for not being able to do all the things we once were.  If we’re not careful that guilt can fester into a boiling self-hatred.

Whoa, hold up!!  Stop right there.

What if the guilt is not coming from the several things you can’t do, but from the things you CAN do?


Read this post in its entirety:

The Guilt of Remission and the Importance of Sharing

Tuesday, April 12, 2011

Share Your Opinion on MS and Aspartame

My friend Chris at HealthCentral is writing a piece on the connection (if there is one) between MS and aspartame.  He would like to get an accurate measurement of what the MS community believes.

Please go to http://www.healthcentral.com/multiple-sclerosis/poll-of-the-day.html and answer the one question: Do you think Aspartame causes MS?

Do go respond to the poll itself (does not require registration) because I do not believe that I can vote addition times to submit your votes.  Thank you!!

Monday, April 11, 2011

Power of Patient Communities, Most Under-Utilized Resource, Let Patients Help

My friend Dave deBronkart (aka "e-patient Dave") presented this talk at TEDxMaastrict last week. He has an inspiring story of beating is Stage IV Kidney cancer through the help of other patients. The Power of Patient Communities.

He is a vocal proponent of patient empowerment and engagement. Fortunately for all of us patients, he has a message which is being heard more widely at conferences such as this and in publications. I've said it before - patients are an under-utilized resource when it comes to improving health care.

In concluding moments, Dave says, "Let Patients Help."

Sunday, April 10, 2011

Saturday, April 9, 2011

Excuse me please, I need a seat

Thursday morning I traveled into Washington DC by riding the metro. It was a surprisingly easy trip really. However there was one minor bump right at the beginning of the trip.

I began the metro trip with my Mom, who uses the metro to get to work every day. Even at 6:20am and being only the 4th station from the end of the orange line, the train was full. Lots of people rushed from the platform to get on board. I was not quite as fast (or aggressive) as many of the business people were.

One thing I know is that it would be very difficult for me to stand on the metro train while it is in motion. Although I've been doing pretty well lately without too much difficulty with my legs, my balance is impaired. I'm not able to respond too quick changes in movements.

The folks in front of me raced for the open seats, leaving none available for several of us who were a bit slower getting on.  My mother boldly asked one gentleman, "excuse me, do you mind if my daughter sits there; she has MS."  He begrudgedly got up and she pointed me to the seat.

So sweet, my mother clearing the way for me - the person who looks completely normal - to sit down while she stands and holds onto the bars.  Nobody turned around and offered her a seat.

After getting off at Metro Center, I had to walk about three blocks to the Willard InterContinental Hotel for the conference I was attending.  It wasn't too difficult, but I was definitely ready to sit when I got there.

At the end of the day, I reversed the process but this time got lucky to find a seat on the metro and didn't have to ask anybody to get up for me.  After arriving back home, I rested a bit and fell asleep on the couch for 2-3 hours.  When I tried to get up, my legs were both weak and tight with spasticity.  It was difficult to move around the house.

On Friday I ended up sleeping most of the day away.  My body was just completely beat.  I had no strength in me and was fortunately able to close my eyes as necessary throughout the day.  I can't imagine going through the same process every day.  I couldn't do it.

This was just a good reminder that although I'm doing really well, I'm not completely well.  But no matter what, I'm so glad to be able to take advantage of opportunities as they arise.  I'm fortunate indeed.

Friday, April 8, 2011

Carnival of MS Bloggers #85

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

Dreams, Joy, Love

by Mary of It is what it is, until it isn't what it once was

I found myself standing in a heavy fog. Trying to see through it I looked down at my feet, at first I couldn't see them. As the fog started to dissipate, I found myself standing on grass. I started looking up from my feet and seeing a field of grass. The fog was thinning I still couldn't see very far, but I wasn't afraid. Instead I was amazed at how peaceful and calm I felt.

I saw someone coming towards me, it was Rusty the dog I found when I was a child. As he came closer it looked as if he had the same ball he had when he found me. Running right behind him was Honey girl without a rock that had been her trade mark in life. It was odd but not surprising that we understood each other. We knew it wasn't my time to be with them yet, that I was just visiting.

As we were greeting each other, I noticed they both had all their teeth. I knew they always have toys, balls and someone to play with. They were so happy, we started running, playing catch and keep-away, Shadow showed up and we started to wrestle. Rusty was gnawing on my elbow, as Shadow was running around us, trying to distract Honey girl, as she was barking at me as I tried to grab her paws. Shadow joined us as it turned into a pet me, rub my belly, scratch my ear. With only having two hands the one not getting attention, was giving me kisses then all three were licking my face. I rolled around until I could get up and started running, then I turned and started chasing them. As we were playing I noticed that more dogs had joined in the fun. Some I knew very well, others knew me better than I knew them, but I remembered them all, it was nice to see them all again. Most didn't stay long but some did.

We came upon a lake that was clear and not cold, without a thought we all ran in with a big splash. As we came out of the water after swimming and playing. We went to lay in the shade of a large tree, I didn't notice before, but I was glad it was there. Lying there and realizing we hadn't stopped, because of pain or fatigue, it was so peaceful and quiet.

Then I heard a Loon's call, an eagle's cry; I began hearing all the sounds of the animals I have listened to throughout my life. Sitting up and looking around it was a beautiful scene. The sky was so blue, with puffs of small white clouds. The birds filled the sky; there were eagles, hawks and songbirds of all colors, shape and size. The sounds filled the air. I closed my eyes, as it became the most beautiful song I have ever heard. It filled my heart with joy and peace and I knew I would never forget how it fed my soul.

Rusty lifted my arm with his nose, as I started petting him opening my eyes, to see in the tree was Tony the squirrel. I had helped after he had fallen from the neighbor's house. He came down and laid across my shoulders. As I looked out at the lake and the field of grass and seeing all the animals I have watched throughout my life. I felt them welcoming me to stay awhile longer.

The cat's came over and started teasing the dog's. Standing up with Tony on my shoulder, we started playing again. It was so nice being with them all again running, laughing and playing. After a time most had gone, Tony climbed down off my shoulder and started walking away the fog was starting to roll back in. I heard a dog whine so softly and saw Rusty walk into the fog. The dream was starting to fade, I didn't want it to end. Calling Honey girl three more times as she walked towards the fog. She finally turned and smiled at me, I realized it was time to go.

The whining got louder waking slowly and calling Grey girl. As she came to the side of the bed, I tried getting out of bed but this is the real world and I still have M.S., so giving Grey girl hugs and petting her until I was able to get myself out of bed. The dream was gone, but the love will always be with me.

It was the best sleep I had in years, waking with so little pain for the first time. Knowing we will be whole again but until then, I'll settle for visiting them in my dreams.


from Nadja of Living! with MS 

Lately I have been feeling some creative inspiration again and I have been looking back at old poetry and journals I wrote at age 23. I found a couple of interesting things. Many things are the same and many are different. Many of the images in my writing are still the same. I still love to be dramatic, and I still am in love with the idea of love :)

I also see the way life has changed. Every day is not a drama. The hard days are not as hard. One of the benefits of age is that it lends perspective. There are still hard days but I guess now I know that the good also comes with the bad. While one day may be a trial, the pain passes quickly and great moments can follow right behind tough ones. Since this blog is "Living with MS!" let me state that I have found these observations to hold true after living almost three years with this diagnoses.

One observation I can share with the newly diagnosed (with relapsing remitting) is that relapses do have an end. Sometimes when you think that some function is irrecoverable, it comes back. It is also easy to get lost in the idea that it's all downhill from the time of diagnoses. Not true: the course of this disease is different for everyone.

My first year was the hardest physically and mentally. At age 34, I am in the best physical condition I have been in since about age 16. I practice yoga every day and physically, I can run circles around my 16 year old students. I have enough perspective on the disease at this point to know that this could also change at any time, but this knowledge is also a gift. When you truly face your mortality and realize that things could change at any time, it makes you value each day of health even more.

Joy is often about valuing what you have, not morning what you have lost or could lose.


from Suzanne of LIVING - Life With MS

We waste time looking for the perfect lover instead of creating the perfect love. -Tom Robbins

In December of last year I was in my office and heard this *SPLAT* on my office window. I didn’t want to look. I knew what it was. But, I did look and there on the ground in the rocks was a small grayish bird alternating between breathing heavy and panting with its beak cracked open. Other than the breathing this precious little creature was not moving--at all. It was 20 degrees Fahrenheit outside and I figured in minutes, if it stayed there, not moving, in the freezing cold, it would be dead. I gathered up a shoe box and put a blue hand towel in the bottom of it for warmth.

I headed around the building and halfway around, there at the front door, was another little bird sitting quietly against the building, protected from the wind. It wasn’t the same bird I saw out the window; this one was a little thinner. I tiptoed in to get a closer look and I realized this bird must be the mate to the injured bird so I scooped him up in my bare hands and placed him gently in the uncovered shoebox and he just stayed there, quiet and still. I named him Reginald.


I went to the back of the building where I found the injured bird sitting very still-panting. I immediately scooped her up and placed her in the shoebox, next to her mate. I named her Chloe.


He maneuvered himself next to her, hopping sideways in the box.

I took them inside (I know, I’m lucky they didn’t take off) and let them warm up a bit and then I went out in the garage, left the door open and after a few minutes he flew out the door and went and perched himself in the small tree just off to the left. She still was not moving much but I took her outside and placed the box on the grass and just like that she took off and flew to him. I have to say, it was amazing and I felt like the “Bird Whisperer.”

It made me think—would I do the same? I’m not sure. I’d like to think I would but how can I really be sure. Recently, I told my husband, “You are the love I thought I would never have.” And I meant it. I can’t imagine, nor do I want to, a different kind of love or love with another person. So, yes, I would stay—I am sure.

A marriage can be weakened or strengthened by MS-by any chronic illness for that matter. There are all sorts of statistics about divorce and chronic illness and overall when the man has the illness the divorce rate is lower. I also read that the longer a couple is married the more likely they will stay together after the diagnosis of chronic illness.

We've been married for 16+ years. Shortly after my MS diagnosis I began to wonder if my husband would leave me. Wouldn’t he be better off without me? Why would he stay with someone who is flawed with illness when he could share his life with someone healthy?

I will have MS for the rest of my life (probably) and it will always affect our relationship in some way. And yet, he stays.

Is this the perfect love? I think what we have is a love we created over time that is perfect--for us.

Start creating your perfect love—stop wasting time looking for it. ~SMR 


This concludes the 85th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 21, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 19, 2011.

Thank you.

Comments for this post.

Thursday, April 7, 2011

WEGO #HAWMC Day Seven

Today's #HAWMC prompt is to send a text to your condition.

@MS : My MS nurse doesn't want to see me for 6 months.  Think you could stay scarce until then?  kthxbai

Join me in Upcoming Events

Two weeks from now will be a busy week for Brass and Ivory (and Lisa).

It's All In The Blog - A blogtalk radio show on Wednesday, April 20 at 8PM with Amy Gurowitz of MS-Life of Learning and Marc Stecker of Wheelchair Kamikaze.

And a WEGO webinar on Thursday, April 21 at 8PM - Navigating Your Health Narrative.


by Amanda
 
The influence of patient bloggers grows by the day. Patients have taken to the Blogosphere in droves, sharing their stories and empowering others. In doing so, they are actively changing healthcare for the better. Patient bloggers and Health Activists are ushering in a new era of health through anecdotes and self-education. This is precisely why we’ve dedicated our April theme to honor Health Activist writers and why we’ve assembled an awesome webinar event for you to attend.

Whether you’re just setting sail on the vast ocean of patient activism through blogging or have created your own advocacy island – this webinar will be fun and educational for all.
Our webinar, “Navigating Your Health Narrative” features a few of the web’s best health bloggers, each with a diverse set of skills and perspectives to the table. Joining me are:



Lisa Emrich


“Blogging brings the tools of empowerment to our fingertips. Sharing stories is just the beginning.” —
Lisa – MS Activist of Brass & Ivory

Erin Breedlove




“Blogging helps me to help others understand that they’re not alone and helps me to advocate for those with chronic illness and disability on a larger scale than I ever imagined, which has turned out to be one of the most therapeutic and effective coping mechanisms in my day to day life.” —
Erin – Cerebral Palsy Activist of Healthy, Unwealthy, & Wise

Jenni Prokopy



“Speaking openly about life with fibromyalgia is so vital to living an awesome life in spite of illness! Being honest about my condition helps me live an authentic life, and helps me connect with my fellow ChronicBabes. I learn a lot from the responses of my readers – and we get to share moments of inspiration, commiseration, and truth. Blogging openly is the only way to go!” —
Jenni – Fibromyalgia Activist of Chronic Babe
We will be discussing:
  • How to start blogging
  • How to create an Editorial Calendar and other ways to organize your blog
  • Where to find great post ideas
  • The do’s and dont’s of self-promotion
  • What a blog “voice” and personality are and why they’re important
  • How to address tough issues
  • How to raise awareness for your condition through blogging
  • And lots more!
Join us April 21st at 8pm EST!   Register for the event here.

Want to ask our presenters a question that may be asked during our live Q&A? Submit on the registration page or in a comment (on the original blog post, not here)!

Wednesday, April 6, 2011

Writing About My Disease: Is it really just about the disease?

The reasons for why I write/blog about my life, my health, and my diseases have changed over the years.  In fact, I contemplated the question “Why My Blog?” over three years ago in January 2008, collecting my blogging story up to that point.  It was my 86th post out of almost a 1000 now.  I had just started the Carnival of MS Bloggers and had not yet discussed some of the more personal aspects of living with MS and RA.

Here’s an excerpt from the end of that post:
"How will this blog make a difference?"

For this, I don't really have a good answer yet. I didn't start out with lofty goals of being a patient-educator or a patient-advocate. I'm not an owner of a healthcare consultant company or a political pundit. Nobody is paying me to blog, conduct research, or discuss issues surrounding healthcare or multiple sclerosis. My background is in education but I have never been much of an activist, always preferring to stay in the background. I do enjoy interaction, love comments and increased traffic, and hope to be able to use my growing expertise to help in some humble way.
Later that year, in July 2008, I was hired by HealthCentral to write for their MS website.  So I began “blogging” for them for pay, but kept that completely separate from my own personal blog.  I was glad to be joining a team of MS writers and work on a website where the focus was not on using a single person around which to build a community.  It was also a good place to start talking more about my disease and less about health policy.

Unfortunately I didn’t understand much about how to build a following of my own or how to promote my work.  Looking back, I wish that I had understood the importance of responding to each and every comment (here and there), as that is one way to keep the conversation on your own website and to raise your profile.  By the way, I still love getting comments.

So what does this have to do with why I write about my health?

Nowadays I am considered a health activist.  I also consider myself a patient advocate and somewhat of an educator.  I wish to see the MS blogging community remain an active and vibrant force on the internet.  I feel that it’s important to promote other people’s material and websites, so I continue to do so.

I write about my health which encourages others to do the same.  Together we help to spread awareness and understanding of what it takes to live with illness.  We provide a resource for those who are searching for answers to questions or validation of their own experiences.  Together we are powerful.
On an interesting side note, just recently my blog had the most visitors in one day ever.  On March 14, 2011, there were 545 visits to Brass and Ivory with 971 page views.  It’s not the thousands of visits per day that some of my Diabetes Blogger friends get, but it was exciting nonetheless. What was so special on that one day?  As the first day of MS Awareness Week, the National MS Society linked to my blog from their website and their Facebook page.  It was only one mention, but that little link was obviously powerful.  (The 2nd highest visitor day was the day that Marc of Wheelchair Kamikaze mentioned my blog in a post.  Thank you Marc.)

If you read Brass and Ivory on a regular basis, you know that I like to promote other blogs.  When I find new MS bloggers, I announce them.  There was a point in time where I would go to each one, practically read their entire blog, and leave at least a simple “welcome to the community” comment.  Seems I don’t leave that comment anymore but some of you faithful readers will.  I’m sure that many of these bloggers don’t have clue who “Lisa” is and they don’t know that they’ve been welcomed and promoted. 

I need to do better in this department, especially if I want to be seen (or my blog seen) as a true hub of the MS blogging community.  It would also be GREAT if other bloggers promoted me as well.  Google likes that sort of thing, you know, the links and stuff.  Before I changed the URL of my blog, Google thought very highly of it and it had a fairly high Page Rank for a little blog. 

But now, my blog has so many more outgoing links than incoming links that it hurts the blog’s visibility in search results.  My Page Rank is 0.  Other websites/blogs who never promote other bloggers or material, and who have experts working on their SEO, do not have this problem.  Their websites come up at the top of searches related to multiple sclerosis or rheumatoid arthritis every time.

So if you are reading this, I humbly ask that you write about Brass and Ivory and link to it.....pretty please?
So back to the business of writing. 

Basically, I am a non-writer who has become a writer.  I enjoy conducting research (most of the time) and sharing the results of what I learn with the community.  It has become a huge part of what I do and who I am, not to mention the time involved in keeping up with everybody is extensive.

Writing has become an outlet for sharing emotions as well.  I can tell you (the community) things which I might not bring up in conversation with persons around me.  I know that you will understand and be supportive.  You have become my personal support group.

Fortunately, I don’t get attacked too often about what I do here on the blog and elsewhere on the internet.  It has happened on occasion but that experience is in the minority of the wonderful interactions there have been over the years.  I aim to be honest and straight-forward always which might upset a few people (or pharmaceutical companies).  I know that you trust me and I take that trust seriously.  I’ve developed true friendships from the blogs and some of us even had lunch together just yesterday.

But is writing always about writing?

Looking back at what I have just written above, I see that a lot of what comes to the surface when I think of blogging and writing lately is less about the writing and more about ‘doing things right.’  Most of what I’ve done has been done by accident.  I didn’t have a clue when I started and I still have only half a clue now.  I’m kinda making this up as I go along folks.

I have to admit that when I read another blog (especially a prominent one) say that they don’t have the information about something, or that they conducted a search on a topic and didn’t find an answer (especially on a topic which I’ve written or documented extensively), I get frustrated.  I want to be on the radar screens of others who are also highly regarded.  I want that information to be more easily found when others conduct Google searches.  Perhaps I should be more controversial, that might get more visits to the blog or maybe more comments which would raise my visibility.  But that's not me.

My apologies if this post has turned out to be not so much about the writing of my disease.  It is a bit of a brain-dump and pseudo-rant.  However, it represents some thoughts which have been on my mind lately.  And THAT is basically what writing a blog is all about.....sharing what is on your mind!!!

#HAWMC (Health Activist Writer’s Month Challenge) Day Six

P.S. How do you like the new profile photo over there on the right?  You have to come to the blog to see it.  ;-)

Tuesday, April 5, 2011

The Day's Activity Haiku

Head to Baltimore
To meet with some blogger friends
Should be a good day

I must stay alert
So Provigil is my friend
Hope to find parking



#HAWMC (Health Activist Writer’s Month Challenge) Day Five

Monday, April 4, 2011

The Absurdity of MS and RA

Word of the day: Ludicrous (thanks to Amanda of Wegohealth)
Aspects of living with chronic illness can be absurd or ridiculous.  There have been times where I looked at the boxes (yes plural) of medication and vitamin pill bottles that I have stored and thought to myself - “how in the world did I get here?” 

How did I accumulate a larger collection of medications than I remember my grandmother having?  She kept a large box of medications on top of her refrigerator.  (Mine are kept next to my bed.)  I know that she had heart disease and diabetes.  She also had cancer.  I don’t know what else she might have been going through medically....as if that’s not enough.

So although I am personally taking fewer medications than I was a one point, I would say that the potentially large medicine box which we accumulate as patients can become ludicrous.

What’s the most ludicrous thing you can think of related to living with your disease(s)?

#HAWMC (Health Activist Writer’s Month Challenge) Day Four

Sunday, April 3, 2011

Heat Sensitivity and Uhthoff's Phenomenon

Does Uhthoff’s phenomenon only involve vision?

A rise in body temperature (whether from exercise, a hot bath, illness, stress, or other causes) may cause other symptoms to appear or re-emerge in patients who have a demyelinating disease.  It is not only vision which can be affected.  For example, my legs become weak and ataxic when my body becomes overheated.  I become extraordinarily fatigued which affects my physical and cognitive abilities.

This is often called “heat intolerance” or “heat sensitivity.”

Some sources strictly associate with Uhthoff’s phenomenon only with visual symptoms, while others expand the description to include additional temporary deficits in body functions caused by damage to the central nervous system.


Read this post in its entirety:

MS Signs vs. Symptoms: What is Uhthoff's Phenomenon?

Saturday, April 2, 2011

Dynamics: Music and Relapses

Today is the annual spring Solo and Ensemble Festival event in Northern Virginia.  I am accompanying several of my students (and even more of other people’s students).  One of the things I emphasize with the kids is that they should focus on five aspects of performance: tone, rhythm, pitch, dynamics, articulation.

Of these elements of performance, it is the concept of dynamics which seems most elusive.  In music we (the performers) need to use great contrast in our dynamic levels so that what we ‘think’ we are expressing through our music is actually perceived by the audience.

Dynamic levels are all about perception.  Subtle changes may go unnoticed, especially if the ensemble is more complicated with competing sounds.  One must exaggerate to be noticed across the room.

My MS and RA symptoms have their own dynamic levels.  Most of the time things stay at a mezzo piano level.  Whenever things decrease to piano, it takes quite awhile for me to finally take notice.  The change from mezzo piano to mezzo forte is one of intensity, or fullness, less about a true dynamic level. 

Those intensity changes are all relative.  What feels like mezzo forte one day may actually be called mezzo piano on a different day.  Same thing with the fortes, of which I would say truly only come with the relapses.  I’m reserving the concept of fortissimo for something unknown which may happen in the future.  Things can always become more intense no matter what.

It is the very long and extended crescendo which is the trickiest.  Like sitting in a tub of water which gradually gets warmer...you hardly notice when it finally gets too hot.  That’s when it is finally time to call the neurologist’s office to be seen regarding a potential relapse.  Most of my relapses have been the result of a subtle crescendo. 

Subtle or overt, it is all about changes in dynamic level.  Relapses are often not obvious, unlike the changes which I encourage my young students to make in their music.  Gotta be obvious so that you can be understood.

Note: Today’s post is part of the Health Activist Writer’s Month Challenge by WEGO Health.  #HAWMC

Friday, April 1, 2011

Alarms Sounding - An MS Acrostic Morning

My ears were awakened by a roaring alarms this morning.
Under the veil of sleep, I was confused and disoriented.  Who wouldn’t be?
Looking outside my window, I saw no car being hijacked.
Then I get up to go downstairs to investigate.
It quickly becomes apparent that the alarm was from within the house.
Precisely on cue the phone joins in the chorus.  Ack, where is the phone?
Looking for it, I finally pick up one receiver only to have it stop ringing.
Eeks, now my cell phone is sounding its own alarm.  At least I know where it is.

Security is checking to see that everything is alright.  Zone 10 has been breached.
Could the front door really be ajar while I’m looking it at closed up tight?
Literally the sleep fog is beginning to role away around this time.
Early mornings are not my thing, mind you.
Reaching into logic hiding under the sleepy cobwebs, I have a thought.
On departing, my mom didn’t get out of the house fast enough and triggered the alarm.
Seems I was close in my guestimation.  Oops, she apologizes for disturbing my sleep.
I decide to see what the world was up to this morning without crawling back into bed.
Seems I forgot to take my morning meds which explains why my face is feeling crushed.

Symptoms are pesky little creatures.  Many of mine are sensory in nature.
You want to ignore them but sometimes they sneak up on you.
Maybe I should get up from the couch and go take some neuronton.
Perhaps that would be the smart thing to do.  ....okay, I just did.
Telling my morning’s story in an acrostic poem wasn’t what I had planned.
Or maybe using WEGO Health’s daily blog prompt this morning was clever indeed.
Makes you stretch your mental muscles and start some creative juices.  Both good
Since I’m now waiting for the drugs to kick in so that I can get on with my day.

(4.1.2011)