Home from the Cold

I'm finally home!! The beach weather was mostly gray, cold, and depressing this past week. However, the sun did come out to play a bit on Friday and then truly showed up on Saturday (the day we hit the road to come back home).

Friday, we drove up from Ocean City, MD, to Lewes, DE. In Lewes we got out and walked along a small public beach. The wind was something fierce and the cold was bitter. It was crazy that we found a couple of guys wind-surfing in the bay.


Simple scarf and gloves was not quite enough to battle the cold wind, so I had to get creative. Standing out in the wind, I attempted to wrap my scarf around my head and then used an ear-warmer band to hold it on while also trying to cover my ears. Let's just say that I felt ridiculous as the wind kept pulling stuff out of my hands while I was attempting to accomplish this task. I wasn't about to take my gloves off to make it any easier though.

After a nice walk on the beach watching the ferry go across the bay and watching the windsurfer pictured above, the very first piece of beach treasure was located on the walk back to the car. I was scanning the sand furiously looking for something not in the shape of a shell or rock.

Rob and I spotted it at approximately the same time, but he mentioned it first. Yippee!! My very first piece of seaglass found on a beach. Thank you Lewes, DE. And then after getting back in the car, Rob took a quick photo to document the scarfy silliness. Now doesn't that look like a happy, yet cold, person?

Beyond Statistics and Recommendataions

If you are interested in evidence-based medicine, statistics, media coverage of health information, and the patients who are affected by related topics, you MUST read e-patient Dave's excellent post today -

"How to Evaluate Something Like the Mammography Recommendations"

Bohemian Muppet Rhapsody

"mama!!"

Happy Thanksgiving Everyone!!

Good Time to have a Conversation

We're continuing a tradition started last year. Asking you to take a moment this weekend to discuss your desires for how to live the end of your life as meaningfully as possible--If you want to reproduce this post on your blog (or anywhere) you can download a ready-made html version here Matthew Holt [or copy mine below]

Last Thanksgiving weekend, many of us bloggers participated in the first documented "blog rally" to promote Engage With Grace - a movement aimed at having all of us understand and communicate our end-of-life wishes.

It was a great success, with over 100 bloggers in the healthcare space and beyond participating and spreading the word. Plus, it was timed to coincide with a weekend when most of us are with the very people with whom we should be having these tough conversations - our closest friends and family.

Our original mission - to get more and more people talking about their end of life wishes - hasn't changed. But it's been quite a year - so we thought this holiday, we'd try something different

A bit of levity.

At the heart of Engage With Grace are five questions designed to get the conversation started. We've included them at the end of this post. They're not easy questions, but they are important.

To help ease us into these tough questions, and in the spirit of the season, we thought we'd start with five parallel questions that ARE pretty easy to answer:

The One Slide[1] Satire

View more presentations from engagewithgrace.

Silly? Maybe. But it underscores how having a template like this - just five questions in plain, simple language - can deflate some of the complexity, formality and even misnomers that have sometimes surrounded the end-of-life discussion.

So with that, we've included the five questions from Engage With Grace below. Think about them, document them, share them.

Over the past year there's been a lot of discussion around end of life. And we've been fortunate to hear a lot of the more uplifting stories, as folks have used these five questions to initiate the conversation.

One man shared how surprised he was to learn that his wife's preferences were not what he expected. Befitting this holiday, The One Slide now stands sentry on their fridge.

Wishing you and yours a holiday that's fulfilling in all the right ways.

The One Slide

View more presentations from engagewithgrace.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team. )

Warning: Brain Dump Looming Ahead

Hi All,

So here I am on the coast for a change of scenery, on vacation for this week of Thanksgiving, yet still on the computer. Gotta love internet access.

I have several thoughts bouncing around in my head. This past Saturday as I was filming a short video for the How I Fight MS project, I talked about being a musician living with MS. Here at MS Central, I've told small snippets of my musician stories but never in great detail. One of the brief stories which stands out in my mind was relayed in this post: "I had to learn to reconstruct my life." - Jacqueline du Pre

Nowadays, I think less about what I "used to be" and more about what I am.

When I first had optic neuritis (at least the first case which was obvious and disruptive) in 2000, I was in the middle of the busiest month for spring performances - March. The week before, I had played at a local university for an event I can't even remember what it was. Such is the life of a freelancer. I was sick and had snot coming out in copious quantities.

The day I woke up not able to see out of my right eye (on a Tuesday), I had two "kiddie concert" performances with the Fairfax Symphony during the day. I missed the first one while I was visiting my own eye doctor and then going across town to see a retina specialist. I made the 2nd concert after which I was squeezed in to see a neuro-opthalmologist in Rockville, MD. This doctor is the one who diagnosed optic neuritis and who was the first one to ever mention the words 'multiple sclerosis' to me. But of course, testing needed to be done first.

Read this post in its entirety:
On Vacation with MS and RA

RA and Congestive Heart Failure

What is the risk of Congestive Heart Failure in patients with RA?

Researchers at the Mayo Clinic have observed that patients with RA have twice the risk of developing congestive heart failure as compared with persons without rheumatoid arthritis. The excess risk stayed elevated even after researchers adjusted for common cardiovascular risk factors (i.e., hypertension, smoking, diabetes) and ischemic heart disease. Most interesting is that the risk of congestive heart failure is higher in RA patients who are RF-positive than in those who are RF-seronegative. This increased risk may be present at the earliest stages of the disease and may occur in the absence of obvious cardiovascular risk factors or ischemic heart disease. See “The Risk of Congestive Heart Failure in Rheumatoid Arthritis: A Population-Based Study Over 46 Years.”

In a more recent study, the Mayo Clinic researchers found that RA patients with heart failure appear to have a more subtle presentation, with a lower frequency of typical heart failure symptoms and signs, as compared with non-RA patients with heart failure. Mortality in the first year following heart failure is also higher in RA patients. Their data suggests that new ways of screening for early left ventricular dysfunction in patients with RA should be investigated in order to optimize survival rates. See “The Presentation and Outcome of Heart Failure in Patients With Rheumatoid Arthritis Differs From That in the General Population.”

Read this post in its entirety:
Rheumatoid Arthritis and Congestive Heart Failure

RA and Heart Disease

What does cardiovascular disease look like in rheumatoid arthritis?

The chronic inflammation which damages joints also takes its toll on the heart and arteries. The doctors at Johns Hopkins provide a summary of recent studies focused on RA and heart disease. Compared to the general population, rheumatoid arthritis patients have a significantly increased risk of heart attack and stroke and a shorter life expectancy.

• Heart attacks are twice as common among women with rheumatoid arthritis as among those without the disease.

• Atherosclerosis ("hardening of the arteries”) starts early and progresses more rapidly in people with rheumatoid arthritis.

• Carotid artery blockages (a risk factor for stroke) are three times more common in people with rheumatoid arthritis than in people without the disease (44% vs. 15%).

• Cardiovascular events, such as heart attack and stroke, occur about 10 years earlier in people with rheumatoid arthritis.

• Mortality is higher among rheumatoid arthritis patients after a first heart attack.

• Blood vessel damage is often already apparent at the time of rheumatoid arthritis diagnosis.

• Heart attacks in rheumatoid arthritis patients are more likely to be silent or to occur without the typical symptoms, and they more often result in sudden cardiac death.

• Congestive heart failure (weakening of the heart’s pumping ability) is more common among people with rheumatoid arthritis.

Accumulating immune system cells (caused by chronic inflammation) attract deposits of cholesterol, blood platelets, cellular debris, and calcium, which clump together to form plaque. As plaque deposits grow, they restrict blood flow through the artery. If the plaque ruptures, clots can break away and travel to the heart or brain, where they may cause a heart attack or a stroke.

Read this post in its entirety:
Rheumatoid Arthritis and Cardiovascular Disease

Carnival of MS Bloggers #49

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

Sherry (aka momdukes) blogs at HealthCentral. She is one to always share a kind word or two and often makes me smile. I hope you enjoy her Walk Through Photographs.

MS through photographs, tell me your thoughts.......

Butterfly Kisses

Each morning regardless of MS, a kiss is what wakes me up!

Come Sit With Me

Sometimes when I am feeling down, I find a nice place to sit and to be alone with my thoughts.

The Lone Bench

Sometimes when I need a place to go and gather my thoughts, I look for a "Lone Bench."

Summer's Last Blooms

Summer has come to an end, so I go and sit among the last blooms, MS & all.

Among the final blooms, MS does not exist.

I hope you have enjoyed this little journey with me. It is like Calgon, just for a moment it takes me away! MS gives us all a hard time sometimes, but we all manage to find that happy place

sherry/smomdukes

********************

Nadja of Living! with MS and Poems from the Blue Plane shares a powerful reflection on relationships and house-cleaning. Perhaps its best not to confuse love with vacuuming.

"Love" in a Vaccum
I feel a rant coming on--

You told me you loved me
So when I got "sick"
You showed me you "cared" by vacuuming.
You were a damn good vacuumer
Very thorough--
I felt guilty because I was too ill to help.

I grew stronger as time passed.
I wanted to return your love so I vacuumed.
I was tired the next day.
You were angry--
It was my fault I was sick,
I dared to vacuum and I brought this on myself.
You forbade me to vacuum.

More time passed--
I vacuumed again.
I emptied the vacuum
But I "Did it wrong"
And left you a mess.
Out of "love"
You cleaned it up.
Again, you forbade me to vacuum.

I vacuumed again.
I was sick the next day.
Later, I wanted to vacuum again but the vacuum was full--
I asked how to empty it and you told me,
"You are not allowed to vacuum.
I will not teach you to empty the vacuum,
Then you won't be able to.
I'll do it for you, don't worry baby.
Save your energy to do nice things for yourself."

I saved energy by not vacuuming.
I went to yoga.
I wrote part of a book.
I painted a picture.
I had lunch with my sister.
I celebrated me just like you told me to.
I felt good about me.
I was happy.

You got angry.
"If you have so much energy,
Maybe you could help out more."

"Ok, how do I empty the vacuum?"

"Oh, it's not the vacuuming--
I didn't take it over so you could go to yoga.
I clean so you will have more energy."

"Great, then you don't mind if I go to yoga?"

"Well, it's ok if you plan one or two of your own activities but only if you save some energy to do things with me."

"Ok, so you resent my free time?
I can do more around here.
You should have fun too."

"No, I don't mind doing this.
I want to help you.
I want to show you that I care.
Let me help you."

"Ok, are you sure you don't need my help?"

"No, I'm good."

"What do you want to do today?"

"Oh, I kinda planned my own day while you were sleeping."

"You did? I thought you wanted to hang out."

"You slept too long."

"I thought you wanted me to take care of myself."

"I do but you slept until 10:00."

"I'm sorry. I'm ready to hang out now. Just tell me when you are ready. I'll just hang around."

"Oh, you should just go to yoga or take a walk with your sister."

"Yeah, but I want to hang out with you."

"I think I'll just do my own thing--"

I can still sense the depth of your love. It is like an ocean that I almost drowned in.

********************

Richard regularly cracks me up. If you haven't yet, please go visit his blog at Everyone Here is Jim Dandy.

My Newly Discovered Active Lifestyle

The first thing I decided to do after being diagnosed with multiple sclerosis was to climb a mountain. Why? I don't know. I guess because it was there, and it just seemed like the natural response to being essentially crippled.

Curiously, as I flipped through the pages of various MS magazines, I found that almost everyone else having MS had already decided to do the same thing, and moreover had for the most part already done it. (I know this because there were pictures).

I determined therefore to not only climb a mountain, but to do so in the dead of winter, preferably in the midst of a blizzard. A blizzard of unprecedented proportions. And a hurricane on top of that, if at all possible.

Just now I'm still waiting for the proper weather conditions, and in the meantime collecting the needful supplies in anticipation of the day. Ropes, for instance, grappling hooks, a decent pair of boots, a stocking cap and ear muffs, mittens (naturally), a loaf of bread for a crumb trail, and of course my various medications, as well as candy bars and cigarettes. I figure the Copaxone will stay cold enough in the expected climate (which is good, because I certainly do not intend on lugging a refrigerator up the side of a mountain--not in my condition).

In preparation for the big day--by way of toning up, I mean--I have begun to look into the idea of marathon running, as I see (also from the magazines) that this form of endurance exercise, though seemingly quite out of the question, is actually quite common among MS sufferers--preferred, though only slightly so, above hang gliding and minor league baseball.

Who knew that a disease would turn me into a sporting fanatic? God works in strange ways indeed.


This concludes the 49th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 3, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, December 1, 2009.

Thank you.

Comments for this post.

Patients for a Moment at ChronicBabe

The 12th edition of Patients for a Moment is hosted by Jenni of Chronic Babe. Do go check out 24 of the best patient blogger posts of recent weeks.

Thanks, Jenni, for including my post at HealthCentral about the FDA, Social Media, and Pharmaceutical Advertising.

Report Adverse Events to MedWatch (FDA)

The FDA Safety Information and Adverse Event Reporting Program

“Your FDA gateway for finding clinically important safety information and reporting serious problems with human medical products.”

Consumers and the Food and Drug Administration (FDA)

Consumers play an important public health role by reporting to the FDA any adverse events (unexpected side effects) after using a medical product, or other problems with any products that the agency regulates. Timely reporting allows the agency to take prompt action. There are a number of ways you can report problems to the agency, depending on the type of problem and product.

What is MedWatch?

MedWatch is the Food and Drug Administration's (FDA) program for reporting serious reactions, product quality problems, therapeutic inequivalence/failure, and product use errors with human medical products, such as drugs and medical devices.

Read this post in its entirety:
Report Adverse Events Directly to the FDA MedWatch Program

Welcome to the MS Blogging Community

MS Day Dreamer
An ordinary person, an ordinary day dreamer, who happens to have MS.

From what I read, I'm lucky. I'm not seriously impacted, I have some annoying symptoms but I can live with that. From the way my Dr talks that may be all i have for a long long time. He seems to think that today's newly diagnosed patients aren't as apt to suffer all the severe symptoms and disabilities as those that have had the disease for a long time, and/or haven't taken any of the meds to prevent things from getting worse. yet, I don't find anyone like me online. maybe that is because the ones that are writing blogs and sharing their stories have more to say because they are more affected. maybe the people like me are busy living their lives and working and don't have the time or energy to share their stories.

Healthy, Happy, and Enabled
The adventures of Lewis - an explorer, mountaineer, marathoner and marine - as he continues his journey through life with MS

Lew is still the amazing person now that he was in the past. Even with all the problems that MS brings, we continue to search for new activities and places to visit. Our idea for this blog is to share the places we have found that are good for a slow-walking, wheelchair-adverse person. We also want to find new places, see how Lew does and share what we find.

Along the way we hope tolearn and have fun. We hope to connect with those who are disabled and need encouragement. We hope to reach caretakers and provide and receive advice. We hope to share the sadness, frustration and confusion of this disease, too. We like the immediacy and effectiveness of pictures and videos, and will use them here.

Mind Sprints
Brief forays into uncharted gray matter. Beware rough terrain caused by multiple sclerosis wrecking crew.

Since reaching the maturity of (gasp) middle age, I’ve become a worst case scenario person. I imagine every possible bump in the road and those outcomes I can’t control, I worry about. If there is a life lesson MS is trying to teach me, it is the need to deal with uncertainty with grace. Everybody’s future is up in the air; for those with MS, it’s just a little more iffy.

Freckled Face Mama's Recipes
Gluten free, dairy free, soy free, meat free (except fish) egg free, sometimes nightshade free and little-to-no sugar recipes.

I'm just an average girl/woman/mama trying to make life for me, and my family of five, happy and healthy. I write because I enjoy it, but if anything I write about is helpful, or at least entertains, I feel my blogs are worth it. The recipes I create are for the unique diets we must follow to maintain our optimal health. I have Multiple Sclerosis, my eldest daughter has Celiac Disease, and the rest of the family has various food intolerances. All the hard work is worth it because it works for us and makes our bellies and our souls happy. The most important thing in life is family and happiness.

Thanks for joining the MS Blogging Community and for sharing your stories.

Switching Meds?

Have you ever thought about switching MS disease-modifying meds or have chosen not to use them? What factored into your decisions?

Please come join the conversation following the MS Central Question of the Week.

Gratitude Friday: it's Never Too Late...

Some time ago I was in the local library checking out the "for sale" selves. This is a dangerous activity as I inevitably leave with more books to stack in all of the corners of my living space. I love books, although I have many unread.

One book which I purchased for 50cents has been sitting on the coffee table. The author is Patrick Lindsay and the title is "It's Never Too Late... : 172 simple acts to change your life." Today I was cleaning up a bit around here and randomly opened this small book to read the following entries.

It's never too late...

to grow

Move forward.
Every day.
Take every chance to learn.
From mistakes.
From advice.
By observation.
Through experience.
Push through your comfort zone.
Explore new subjects.
Meet new people.

It's never too late...

to find balance

It's a bit like class:
hard to define but you know it when you see it.
You'll know balance when you feel it.
Seek it in your work.
Your relationships.
Your family.
Your diet.
Your passions.
Enjoy the glow.

It's never too late...

to write

Your stories are like no other.
Your experience.
Your view.
Your hopes, losses, triumphs.
Are unique.
Record them.
Invent them.
Write them.

"You can only write about what bites you." - Tom Stoppard

I hope that you continue to grow, find balance, and share your stories. I attempt to do the same. Please have a great weekend, folks. Thanks for reading.

FDA, Social Media, and Pharma Ads

I’m looking for your thoughts and opinions on a matter which may directly impact us as patients and the manner in which we get information. This Thursday and Friday (November 12-13, 2009), the Food and Drug Administration (FDA) is holding a public hearing “on how pharmaceutical companies use the web and social-media tools to market their products - the first step to providing guidelines around this type of marketing. Sixty-two speakers from pharmaceutical companies, media companies, agencies, and others have been asked to give their viewpoints.”

I’ve been following the lead-up to this event fairly closely as the CEO of HealthCentral, Chris Schroeder, will be speaking during two sessions. HealthCentral is even hosting cocktails after the first day of hearings. (invitation seen here) Have I ever mentioned that I live only about 4 miles from HealthCentral's Arlington, VA, offices? I do, although I've still not been over there to check things out in person.

Read this post in its entirety and please comment:
FDA, Social Media, and Pharmaceutical Advertising

Complications of RA and Diabetes

Do you have RA and diabetes? Or are you concerned with developing diabetes if you have RA? If so, I wrote a post on MyDiabetesCentral.com which is just for you. Here is an excerpt:

Does Plaquenil, a medication commonly used to treat RA, lower the risk of developing diabetes?

The Journal of the American Medication Association (JAMA) published a study which looked at that very question. (See Hydroxychloroquine and Risk of Diabetes in Patients With Rheumatoid Arthritis) Antimalarial drugs, like hydroxychloroquine (Plaquenil) which is commonly used in autoimmune diseases such rheumatoid arthritis and lupus, have been reported to cause both symptomatic and asymptomatic hypoglycemia and have been explored as an adjunct to insulin and oral hypoglycemic agents for poorly controlled type 2 diabetes.

Results from this 20+ year study showed a reduction in diabetes risk of up to 77% for RA patients taking hydroxychloroquine for more than 4 years, a finding that is comparable or superior to that of other drugs studied in clinical trials: rosiglitazone, combination hormone therapy, estrogen only, metformin, acarbose, and ramipril. Secondly, those who had taken hydroxychloroquine compared with those who had never taken the drug who had prevalent diabetes at enrollment or developed diabetes during the follow-up observation period were less likely to report use of hypoglycemic medication. Antimalarial drugs may have a role in treating rheumatoid arthritis not only to suppress inflammation of the joint-linings but also to reduce the likelihood of developing glucose intolerance and dyslipidemia.

Read this post in its entirety:
Complications of Having Rheumatoid Arthritis and Diabetes

Nifty Hand Toy

So the toy seen above was designed by a trumpet player. Sure wish I had been that brilliant trumpet player because now the "Gripmaster" is used by musicians, occupational therapists, rock climbers, and at least one random MS patient.

Yellow has the least amount of resistance and the toys are color coded. I don't even want to think about how hard it might be to press the keys on the black version which is available for some serious rock-climbing finger training.

P.S. Absolutely no compensation has been offered nor received for showing off this little gadget (which happens to be available at many music stores and REI).

Lego vs. Organ Donor

Carnival of MS Bloggers #48

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

Sherry (aka Have Myelin?), who blogs at Words Salads: The Demyelination of Me and Postcards of My Life, recently did a little Four Wheelin' and has brought back some great photos. I hope you enjoy this sampling as much as I have.

Life is like this: a journey of unknowns with many bumpy mistakes

Sometimes it's a long climb back



Where the wild things are



MLK: “Carve a tunnel of hope through the dark mountain of disappointment"



India Arie: "Beautiful Flowers", a song for every girl who has been thru something



Haze and rain eventually go away



The road less traveled can be a bit crowded sometimes



Thank you, Sherry, for sharing such beauty!! All images copyright Sherry Turner.


This concludes the 48th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 19, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 17, 2009.

Thank you.

Comments for this post.

Trying to Plan Ahead is Exhausting

I am frustrated!! Those of you who read my blog and keep up with the personal ups and downs I experience may recall that I'm to try Rituxan to treat my RA. The neurologist gave the thumbs-up some weeks ago so my rheumatologist said it was "a go!" The only consideration I needed to make in regards to my MS was to be off of Copaxone for 2 weeks before hand.

When I received that news I stopped injecting daily so I've been MS-drug free for almost 3 weeks now as of Friday. Then there were several questions which needed to be answered before the infusions could be scheduled.

Does my insurance company require pre-authorization for Rituxan infusions? No
Does my insurance prefer one hospital over another? No.
Inform rheumatologist of insurance requirements. Done.
Inform rheumatologist which hospital I have chosen to have infusions. Done.
Have rheumatologist fax orders to hospital. Done. (more on this below)

Is there financial assistance available? Yes.
How do I apply for said assistance? I called and received packet in mail.
Is my rheumatologist already in said program? No.
Is my hospital signed-up in said program yet? No.

How much will $4000 copay assistance cover? Must know price of drug first.
Call insurance company to determine negotiated rate of drug. They need code #.
Call financial assistance program to get code #.
Call insurance company again with code # to get price.
Fingers crossed that the correct info was given and $4000 will cover my 10% responsibility for the drug portion alone for one year.
I will still have to pay infusion-related costs without assistance.

Allow time for my rheumatologist to complete paperwork (still within 2 week Copax-free zone so all is okay).
Call hospital to schedule Rituxan infusions. They haven't received orders?
What?! Told to call my doctor and then call infusion center again.

Complete medical information release form which was in packet I received for copay assistance program.
Take form to rheumatologist office to have them fax it to program.
Have them call to enroll their office, too.
Call to activate copay 'credit' card. Notice that immediately available credit is $2000. If more help is needed, it may require submission of financial need forms.
Worry about this later.

Inform rheumatologist that hospital says they don't have orders.
My doctor faxes orders again and calls me personally later in day.
(Note she has called me personally at least 3 times during this entire process.)
Call hospital to schedule infusions, hoping to get this started tomorrow or Friday.
No can do. All booked. Must wait until next week.

But infusion next Thursday means follow-up infusion on Thanksgiving when the infusion center is closed. Oh, and Rob and I were thinking of escaping out of town that week. And next Saturday is our fall "piano kids-only class day" here in my studio, an event which is always exhausting because it involves groups of kids and parents who are hosted in the upstairs area of the house which requires cleaning the house first.

This isn't a good schedule. I had planned to get it done this week and the week BEFORE Thanksgiving to enjoy having it out of the way. So I talk to Rob who validates my anger and frustration and helps me to come to terms with putting this off yet another week.

So now I'm scheduled to have Rituxan infusions on Nov 19 and Dec 3. We will be free to go away the week of Thanksgiving as Rob's taken the week off. I don't need to worry about being worn down while trying to clean the house (note to self: please consider hiring someone to help this time around).

But I'm still frustrated that they didn't have my orders (easily on hand) last week when I called and that now I will be 5-weeks off MS meds, with the worry that I'm living unprotected. Yes, I know. The fear is self-imposed and who knows if those nasty immune cells are having fun eating away at my myelin instead of the Copaxone particles.

Note to self: It'll all be okay. Breathe!!

Writing Online about Multiple Sclerosis

The subject of writing to heal has been discussed in many circles of folks interested in the trend of social media and patients, including blogs, Facebook, Twitter, message boards, and communities such as ours here on Health Central.

Communities are not a new phenomenon. In fact, I remember being part of a list-serve during graduate school which brought together french horn players and teachers from all over the country and the world. Some communities continue to exist in list-serve (email group) formats. Similar MS-related groups on Yahoo! still thrive.

When I first had optic neuritis in 2000. The first goal was to gain information regarding multiple sclerosis and neuromyelitis optica (Devic’s Disease) which was a possibility for me. Devic’s Disease can be devastating and is considered by some as a more aggressive form of MS, although it is now known that that are distinctly different.

Where did I go for information? The internet, of course.

When I was in the process of getting the official MS diagnosis many years later, what did I do? I went to the internet, researched treatment options, and lurked (mostly) on an MS forum called MS Watch.

This forum was hosted by a pharmaceutical company, but the community itself was comprised of MSers on any or no treatment. It didn’t matter. If you were interested in MS, you were welcome. That forum was shut down about a year into my diagnosis. Some of the members created a new forum, called MS Refugees, and continued to stay in touch. However, I always thought that it was a shame so much good information was lost into cyberspace when the original forum was closed.

For a long time after that, I didn’t look for other MSers online. Instead I turned to the National MS Society for information and support. Then about a year after MS Watch was closed, I started my own blog Brass and Ivory. In the previous two years, I had been through a great deal in trying to obtain MS treatment and had struggled through the American healthcare system. I wanted to talk about health policy and create a place to share the resources I had discovered during my struggles.

Read this post in its entirety:

MS Can Take a Hike!!

Advertising and Community

Hey, did everybody have a nice Halloween? Lots of trick-or-treaters? We had some but not a lot as it started raining here. And the humidity....it felt like Bloomington, Indiana in the summertime.

Today I've got an observational rant brewing. So hang on tight.

I participate in a program online which sends me links to surveys on occasion, based upon information which I had shared when I initially signed up. During the past year, there have been many more surveys and polls which are related to health, specifically multiple sclerosis and rheumatoid arthritis (since I have both of those).

There was a survey which I participated in not too long ago, maybe sometime this summer, which was obviously geared towards improving a marketing message to those of us who have MS. I think that now I've seen the product of that survey.

Yesterday, I received both Momentum (magazine of NMSS) and MSFocus (magazine of MSF) in the mail. In my first flip through the pages of Momentum I came across a three page advertising for www.msactivesource.com which is a Biogen/Elan website. Note to webmasters/PR folks who might come across this blog post.....fix your security certificate!! It is only valid for www.msactivesource.com but not msactivesource.com, although both versions of the URL are used in your advertising. Tiny, bad mistake. Fix it.

OK, the first page of the advertising is sparse and is what caught my eye. It has the following words:

"The MS community has a new place to call home. Welcome to the only online resource you'll need."

Community is becoming a huge buzzword these days. We have the MS Blogging Community, the MS online community (including blogs, forums, message boards, websites, etc), the MS community offline which include patients and healthcare professionals, etc, etc.

The thing which erked me about the statement above is that in NO WAY can there be only a single online resource that any of us will ever need. That simply looks down upon everything else which is available online to MS patients, including the National MS Society.

I'm sure that wasn't their intent but it was my gut reaction.

Then the phrase which revealed this PR effort was related to one of the surveys I participated in - "An MS Place of your own." Interesting that now the term 'community' is no longer used...because they have not created a community but have simply offered some online tools which might help you track your symptoms, organize appointments and activities on a calendar, and play 1 of 8 games online.

The advertising mentions "MS Video Stories" so I was interested to see what was there, especially in light of the vlogging which I am now doing for the website HowIFightMS.com. So I created a profile which was basically giving them my contact information, creating a login, and agreeing (or not agreeing) to receive information regarding MS and treatments from them.

Note: Drug companies are racing to get the first oral MS disease-modifying drug on the market and pre-launch activities have already begun.

Merck KGaA (EMD Serono) has Cladribine.
Novartis has FTY720 or Fingolimod.
Biogen Idec has BG-12, CDP323, and peg-Avonex.
Teva has Laquinimod.

As far as "video stories" I found one video which combined interviews of three MS patients with someone who dressed and spoke as a nurse. This video was available without creating a profile and I didn't find any others behind the sign-in.

Although this website is meant to be for anybody with MS regardless of treatment choice, the information regarding available therapies was embarrassingly skewed towards Biogen's products. Seriously guys, couldn't you have provided a bit more information (in a balanced way) regarding the other products.

The one thing which was a nice surprise was that the games are decent. They obviously paid someone to create (or licensed) a nice selection of simple games which kept my attention for a while. Someone does need to change the description of Sudoku, however, because it is not a mathematical game per se and each row does not ADD up to 9. Tiny mistake.

So that was my gut reaction. MS Active Source is not a new program or website from Biogen Idec and Elan, but it does have an improved navigation compared to the previous version. There's nothing really new here which can't be found elsewhere but it would be useful for newly diagnosed patients to get a rough overview of the disease.

P.S. Biogen Idec and Elan, I downloaded a couple of the pdf's you offer and suggest that I could print out a copy and take to my doctor. Well, seriously, you could have condensed the forms down to a single page as to save paper. The world is trying to "go green" and empty space is a shame. The forms look pretty but are not too environmentally conscious. Just my opinion.