Sunday, July 31, 2011

Not a Bladder Infection, Not an Appendicitis

Last week, I was not feeling so well and then my abdomen began to hurt.  Read what transpired in just a few short days, beginning with: 


 followed by:


Ending up with me feeling much better already.  :)

Read this post in its entirety:

Importance of Listening to Your Body: MS and Illness

Thursday, July 28, 2011

Cur E. Us, the Mouse and Researchers at Duke University


No matter your age, research can be fun, entertaining, and educational.  Researchers at Duke University demonstrated that fact during the 2011 Juvenile Arthritis Conference in Arlington, VA, at the beginning of this month.

Groups of children aged 6-16 were hosted in the MOUSE lab where “Cur E. Us” (the research mouse) taught the kids about cartilage, joints, body movement, inflammation, and arthritis.  Each session began with a discussion of cartilage and how it is made of certain cells and the researchers discussed how they are learning to create cartilage in the lab.  A cool 3-D tour zoomed you right into the microscopic cells which make up cartilage.

Read this post in its entirety:


Duke Researchers Make Research Fun for Juvenile Arthritis Kids

Wednesday, July 27, 2011

Family Treasures

In one month, my 25th high school reunion will be held in Oklahoma City, OK.  I'm actually going to attend this one as I haven't been to any others.  In preparation, I wanted to find a few select photos to share on Facebook with my high school friends.  But first, I needed to find my photo albums.  That was quite a task.

Finding albums from my college years was easy.  They have been moved with me over the years as I've changed locations and lived in four states.  But of course, the college albums didn't have what I wanted.

Time to start digging through the boxes which have been sitting in the basement since my parents divorce.  At the same time my mother was packing her belongings (following the divorce), I took the opportunity to retrieve my own belongings.  It was an insane day of packing and I hadn't looked through my childhood 'stuff' since that day.  The photo albums I wanted were among my childhood belongings.

Yippee, yay, I finally found them!!  Besides the photos from summer music festivals, award ceremonies, graduation, and a few band pictures, I found pictures of my cats, my friends, and my family.  Not too many pictures of my family members, unfortunately, just the ones I took with my own camera.

Our family photo albums have been 'lost' somewhere in the aftermath of the divorce.  To the best of my knowledge, my mother does not have them.  I certainly haven't seen them here in Virginia.  My father says that he doesn't have them.  And I know that they weren't in the traditional storage location when my mom packed her final belongings, because I looked for them specifically.

As a result any photos I might have of myself as a little person are treasured.  These random photos eventually came to me as loose items after different family members passed away over the years.

Here is one such photo where I was not even a year old.  Looks like I was finally growing some fuzz on my head.  We are in front of my great-grandmother's house.  I was very fortunate to have known five grandparents (2nd spouses included) and six great-grandparents while growing up.

The next photo is one which I found in my high school albums.  Here are four generations of females: my great-grandmother, my grandmother, my mother, and myself.  That's my brother in the back.  This picture was taken on Mother's Day in 1984 and my great-grandmother died later that year in October.  She was only 82 years old.

I was very close to this great-grandmother and was devastated when she died.  She was often my babysitter and taught me to crochet when I was little, as I seemed to always need to be doing something with my hands.  It was later that the 'something' became playing the piano.  Piano, books, a deck of cards, and cats were favored in my childhood.  Not so much different than today.

Maybe I'll have to scan a collection of 'Lisa with cats' photos and share them sometime.

Saturday, July 23, 2011

Vaccines and MS: Yellow Fever and Relapse

Although common vaccines are safe for use in multiple sclerosis, a recent study in the Archives of Neurology (online June 2011) indicates that the Yellow Fever vaccine can increase relapse rate in travelers with MS.  This study was conducted by the same researchers who undertook the meta-analysis referenced above.

Seven patients with RRMS who were traveling to areas where yellow fever is endemic received the yellow fever vaccine and were observed for two years.  To serve as controls, twenty-one additional patients were included: 7 healthy individuals who were age- and sex-matched, 7 MS patients who received flu vaccines according to WHO (World Health Organization) recommendations, and 7 MS patients who receive no vaccines.

Patients were told to report exacerbations within 72 hours, otherwise they were examined every 3 months for 2 years.  MRI scans were conducted 3 months and 9 months following vaccination, and were compared to scans conducted 12 months prior to the beginning of the study.  Relapses were analyzed both during the “at risk period” which was weeks 1-5 following vaccination and the “non-risk period” which was the remaining time of weeks 6-104.  Since the yellow fever vaccine contains a live virus, researchers began measuring the ARP one full week after vaccination.

Read this post in its entirety:

Yellow Fever Vaccine May Increase Risk of Relapse in MS Patients

Friday, July 22, 2011

Carnival of MS Bloggers #93

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

Humility and Grief, Neuro Ourselves

by Laura of Shine the Divine

Small Stone:
Some mornings it seems the tub is filled with an equal measure of clear water and tears. They trickle down my cheeks becoming one with the bath as I imagine a former joy that is now impossible. I see myself stepping out, drying off, dressing (that I can currently do) and taking a walk through the quiet neighborhood before anyone else is awake; wheelchair and assistance free.

More pebbles in the river of my mind:
The loss of independence seems unbearable at times. Asking my daughters to push me up and down the hills of our neighborhood in my wheelchair feels like begging. It is hot. They don’t want to get up early while it is cool. They are teenagers. My belly aches, my jaw tightens, as embarrassment seeps into the hole where pride struggles to stay planted. I weep into the water, knowing that I must ask for help to go outside in the oppressive summer heat if I want fresh air (not that it is any different in the cooler months, I still can’t manage the chair by myself on the hills).

Then I contemplate all those in the world whose suffering is far greater than mine will ever be. A flicker of shame is sparked briefly, until compassion pours into the craggy spaces tangled with conflicting thoughts and emotions, nourishing the roots of dignity grafted to pride, transforming self-pity to acceptance, opening to lovingkindness for all beings.

You think you are done grieving, until a new wave washes over you. So it is, so it is. I meet the sadness with a gentle hug, arms wrapped around legs, hands resting on opposite shoulders, forehead on knees, grateful I can still bend into this posture of humility. This flexibility that still remains is a gift, I know. I am grateful.


by Judy of Peace Be With You


Unexpected task
having to research and find
my own solutions.

Some will remind me
I did not attend med school
and am no expert.

Here is the problem.
Experts themselves lack answers.
Whom do I turn to?


by TickledPink at Gilenya and Me

With all of the other medical issues going on I decided to take advantage of the fact that my Medically Needy Share of Cost had been met and try to get an appointment with my new neuro, Dr. Silliman, at Shands Jacksonville Neurology Department. He had been the lead investigator in my TRANSFORMS clinical trial and was very familiar with me.

I didn't have a neuro outside the study (long story; last neuro had a stroke) and I had sort of been leaning on the trial to do all the neuro-esque stuff to me and catch anything that needed catching. In the trial I was poked and prodded and tested to the brink of insanity every three months.

It had now been 5 months since the study completed on Jan. 20, 2011.

So I called a couple weeks ago and got the person in charge of scheduling. She says "can you come at 3:20pm on June 23rd? It's the ONLY appointment he's got left for this month." And my answer is "of COURSE I'll be there! Put me down for it."

So I plan my trip accordingly. It's a 1.5 - 2 hr. drive to get there depending on how you go (I take the long scenic SLOW route as opposed to I-95 which scares me to death.) and I made sure to work in a planned stop to JoAnne's Fabric store so I could feed my new addiction - sewing clothes for my granddaughter. I also planned to stop for something to eat at Crispers which was on the way and has really tasty soups and sandwiches. (I had the Citrus Chicken Wrap <-- totally awesome!).

I spent the morning coloring my hair so I didn't have to wear my "Please don't feed the Skunk Woman" shirt, and I was out of the house right on time at 1:15.
================================================================
Geeze, I started this post quite a while ago (June 25th and it's now July 14th) and probably don't remember what all happened now to finish it. I need to stop starting stuff and not finishing it! I bet I'm ADD (but there I go on another tangent.... oo! a butterfly!.... what was I saying?)
================================================================
Anyhoo, to get to the point (was there one other than the main one about what I ate for lunch?) I get there and was signing in and they are looking at me all curious like from behind the counter. I notice the waiting room is empty. It's 3:15 in the afternoon. I ask which sheet is the one to sign in on for Dr. Silliman since there is a whole line of clipboards on the counter.

The ladies exchange glances that tell me they are bracing for the Angry Patient Response that they both know is coming. She asks for my name and tells me to come sit at the chair in front of her desk like letting me sit in the comfy chair will make what she's about to tell me all better.

I sit down and she starts clackity clacking on the keyboard doing stuff with that number pad over on the right that I never ever use. I hate when they do that because I can't figure out what they're up to. Then she stops suddenly and said, "You were bumped."

I say "Huh? Nobody told ME!"

She said "They didn't call you?"

"NO!"

"Is your contact phone blah blah blah?"

"YES! And I didn't get a call"

"Hmmmm" (long awkward pause).

Me: "Look, I just drove for 2 hours to get here and I'm not leaving until someone sees me. I was told this was his last slot for the month and my share of cost is met and it's the end of the month practically so I guess you need to find another neuro who can squeeze me in."

(she makes that "eeesh" face, upside down smile thing with open mouth that suggests that might not be too easy)

"See, he had his schedule cleared for this afternoon because graduation is today." (I keep forgetting it's  a teaching hospital).

"Yeah, well that's fine but it would have been nice to KNOW 2 hours ago before I wasted my day and thirty bucks in gas."

I sat down again (having stood up when I became irate) and said "I'll wait here until you get something figured out because I'm not leaving until I see a neuro."

She left and came back about 15 min later telling me Dr. Nameaslongasyourarm would see me and whisked me away down a maze of hallways that ended up looking awfully familiar. The spot I ended up in was one of the exam rooms over on the Research side where I always went during the trial. I was "home" and immediately felt comfortable.

I saw a guy in a white lab coat who seemed a little unsure of stuff I was telling him. I was guessing it was due to the fact that I'd been on Gilenya for nearly 4 years while it's only been approved since last September. I was thinking maybe the doctors who weren't involved in the study aren't as well versed in the stuff. Either that or they put a lab coat on the janitor and told him to wing it. Turns out the truth was somewhere in the middle. He was a resident. When he brought up my MRIs on the computer and had my initial one from the study side by side with the latest one from Jan 2011, I started asking questions he couldn't answer. Then he starts whapping me with that rubber mallet and when he hit my left knee I kicked him.

I didn't meant to kick him, but shouldn't a neuro who is examining an MS patient have sense enough to stand to the side when testing their reflexes?? He abruptly left the room. Wow. What a wuss. I only kicked him in the shin. It wasn't like I nailed him in the privates or something.

He returns with another guy in a lab coat who seems a whole heck of a lot more at ease with himself and confident. He shakes my hand and introduces himself as Dr. Somebodyelsewhosenameiforget. He takes the mallet from the first guy and gives me a whack. Immediately I could tell he knew what he was doing. He stood off to the side as my leg flew up as if to launch the winning field goal.

He turns to the janitor and says "You're right! Her reflexes ARE brisk!"

Then he taps me all over, watches me walk, and looks in my eyes. This is when he said "I see some optic pallor more prominent in the right eye than left."

Whoa! Back the truck up! I have never had an MS related issue with my eyes so the way he said it, like it should be no surprise, surprised me.

Of course I had to come home and google it. I'm not buying what he's selling though because none of the real eye exams by the neuro ophthalmologist ever revealed any issues whatsoever, so this guy with a pen light and no dilation drops isn't about to intimidate me. I don't care what he thinks he sees.

Speaking of what he saw, he also looked at my side by side MRI scans and got them to sync so that he could scroll through matching image slices like seeing my brain melt away from the top down and compare things. He stopped at one point to teach the janitor/resident about Black Holes. Apparently I have one. News to me.

A Black Hole is where MS has done so much damage that not only is all the myelin all gone but so are the axons it was meant to protect. Total nerve annihilation. He did say that it was so small I probably didn't even have any noticeable symptoms from it.

They did a blood draw after my prompting and a little researching on their smart phones once I mentioned that in the trial they did blood work every 3 months especially since there can be elevated liver enzymes. No mention of any eye exam, PFT or any other test that was so common place during the study.

I left there feeling a little less confident about my eyesight and my brain, but decided they may not know what they're talking about. I'll wait until I get to see the neuro I'd intended to see. I was told to make a 3 month follow up with him.

The day after my appointment I got a phone call. It was a courtesy call to let me know I was getting bumped... from my appointment the day before. Duh.


This concludes the 93rd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on August 4, 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, August 2, 2011.

Thank you.

Thursday, July 21, 2011

Drugs for MS Cost Too Damn Much!

Readers of this blog already know this little fact.  We've discussed the price and cost of drugs prescribed for MS on many occasions.  (See posts linked below.)

Yesterday afternoon, news outlets were announcing the result of a 10-year study on the cost-benefit of MS treatments published online in Neurology.  In reading the news coverage (because the study itself is available only to subscribers to the journal), it appears that cost-effectiveness or Quality-Adjusted Life-Years (QALY) was not the only measure taken.  It was determined that earlier treatment was more cost-beneficial over time.

The study did suggest that lowering the price of MS drugs (Avonex was used as an example) by 67% would bring their QALY cost to an amount more in-line with what is acceptable in the United Kingdom where NICE helps to control price and access to medication treatments.  One commenter on an article shares that these drugs cost 1/4 the US prices in Israel where there are only 4000 MS patients.

You can read coverage in Reuters, Bloomberg, New York Times, Los Angeles Times, Washington Post, U.S. News & World Report, FiercePharma, Science Daily, Corante, Pharmalot, WebMD and the National MS Society who helped to sponsor the study.

[Note that there must have been an embargo on this news release until around 4:30PM yesterday.  I must not be on the right press release mailing lists, certainly not the same ones as the "big" news outlets.]

Here are several posts where we've already discussed the price of MS drugs:

Gilenya Priced at $4000/month, 30-50% Higher than MS Self-injections (October 2010)
At that time, the four main MS disease-modifying treatments ranged in cash price from $34,667-$39,928.  Gilenya was introduced in September with a price of $48,000.

The Rising Price of MS Disease-Modifying Medications (March 2011)
Between October and March, the other MS-related drug companies raised their prices.  The four main self-injectable drugs ranged in price from $34,980-$45,140 with Gilenya (the only oral pill, taken daily) at $48,000.

When I was first prescribed Copaxone in December 2005, it was priced at $18,000.  Now it is $45,048/year, a price which is 2.5 times higher in cost in less than six years.

Now when trying to determine what exactly are the prices of these drugs, it becomes a game.  I had previously used the same website/online pharmacy to determine the price of these medications.  But drugstore.com no longer provides information on Copaxone or Rebif.  So I have to turn to a different source, destinationrx.com, which could alter my price comparisons over time.

For instance, today drugstore.com prices Avonex at $3029/box where destinationrx.com prices Avonex at $3307/box.  Gilenya compares at $3880/month and $4268/month, respectively.  Betaseron at $2990/box and $6661/month (which I believe is actually enough medication for two months).  Destinationrx lists Copaxone at $3754/month and Rebif at $3338/month.  The variations continue....

Using destinationrx numbers, the range of prices for MS disease-modifying drugs today (not including Tysabri) is $39,966-$51,216.  Just imagine if the prices were lowered by 67%!!  $13,189-$16,901 would actually seem rather reasonable.  I'm sure that the insurance companies would prefer that.  But maybe not, because why else wouldn't they be better at negotiating lower costs for their "customers" when it comes to drug prices.


Money Spent on MS Drugs Continues to Rise, But Do You Know How Much? (April 2011)
"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. "

One of the news articles I have read regarding the Neurology study, the author referenced an accompanying editorial which stated that "...costs may naturally go down with the advent of more oral DMTs (as opposed to the injectables that are primarily in use now) and as drug company patents expire and generics are introduced. "  My opinion is that this editorial author is confused with what SHOULD happen in a normal market for medications.  The market for MS medications is anything but "normal."

The MS Relapse is Not So Inexpensive (June 2008)
After receiving the EOBs following a 5-day IVSM treatment and a trip through the MRI machine, I learned that one relapse resulted in $6000 of adjusted medical costs.  This did not include time off work or any other financial effects of a single relapse.  Just the medical costs which were originally billed at $10,500.  Absolutely crazy.


The Value of Money or the Value of Health - What do you see? (January 2008)
From December 2005 to January 2008 (two years later), Copaxone's price had increased from $18,000 to $21,000.  A bargain by today's pricing standard for MS drugs.

Here is the abstract of the Neurology article/study:

Cost-effectiveness of disease-modifying therapy for multiple sclerosis
A population-based study
K. Noyes, A. Bajorska, A. Chappel, et al.

Objective: To evaluate the cost-effectiveness of disease-modifying therapies (DMTs) in the United States compared to basic supportive therapy without DMT for patients with relapsing multiple sclerosis (MS).

Methods: Using data from a longitudinal MS survey, we generated 10-year disease progression paths for an MS cohort. We used first-order annual Markov models to estimate transitional probabilities. Costs associated with losses of employment were obtained from the Bureau of Labor Statistics. Medical costs were estimated using the Centers for Medicare and Medicaid Services reimbursement rates and other sources. Outcomes were measured as gains in quality-adjusted life-years (QALY) and relapse-free years. Monte Carlo simulations, resampling methods, and sensitivity analyses were conducted to evaluate model uncertainty.

Results: Using DMT for 10 years resulted in modest health gains for all DMTs compared to treatment without DMT (0.082 QALY or <1 quality-adjusted month gain for glatiramer acetate, and 0.126–0.192 QALY gain for interferons). The cost-effectiveness of all DMTs far exceeded $800,000/QALY. Reducing the cost of DMTs had by far the greatest impact on the cost-effectiveness of these treatments (e.g., cost reduction by 67% would improve the probability of Avonex being cost-effective at $164,000/QALY to 50%). Compared to treating patients with all levels of disease, starting DMT earlier was associated with a lower (more favorable) incremental cost-effectiveness ratio compared to initiating treatment at any disease state.

Conclusion: Use of DMT in MS results in health gains that come at a very high cost.

(To access the full study, the price is $20/day for nonsubscribers.)

Wednesday, July 20, 2011

"Payment is Coming!!" - Hospital Billing Down My Neck

Just a tiny little vent.

March:
I had my 3rd round of Rituxan infusions at a local hospital.  The experience was okay and I'm glad that the medication works.  As would be expected, the hospital filed with my insurance company.  I kept checking the insurance company's website to see when and what insurance insurance paid.  That took a little while.

April:
My insurance company processed the claim and I could see exactly how much they paid.  Shortly thereafter I received the EOBs (Explanation of Benefits) which are very important documents for records and for submission to the drug company assistance program.  Now I only had to wait for the hospital bill (hopefully itemized) so that I could submit the information to the drug company who was to pay my out-of-pocket costs for the drug costs itself.

May:
The hospital only prints bills once a month on the 10th of the month.  I received my first hospital bill on May 17.  Yeah!!  Now I can compile all the necessary documents and fax them to Bettina at the drug program.  Since my printer/fax is on the fritz, I send the forms with my mother to fax from her work, something which occurred on May 24.

The next day just as I'm about to call Bettina to double check that she received my fax, she calls me instead.  Since it had been more than a year after I initially signed up with the program, I needed to sign up again.  She would send me a new packet and instructed me to call her as soon as I received it.  She would tag my file in the meantime and could process everything quickly as soon as she received my phone call with the new program credit card number included in the packet.

June:
I receive a phone call from Michael at the hospital billing department.  He basically wants to inform me that I have a balance from the oncology service I received on March 18 and would I like to take care of it.  The balance is $2240.99.  I tell Michael that a program (from the drug company) is paying the majority of bill and request that he please make note of that in my records.

I receive June's hospital bill around June 17.  No surprise, it does not indicate payment from the drug program.  It is too soon.  No worries.

July:
I return from vacation with a phone message from Michael.  I call him back.  He wants to inform me that I have a balance of $2240.99 from the oncology services I received at the hospital on March 18.  I remind him that there should be a note in my file that payment is coming.  There is.  Michael says that the hospital allows four months for payment and that they are required to make four phone calls.

Geez.  Didn't the program pay yet?  I call Bettina to check on the status of payment.  She can not find my file!!  She has no record of receiving any information from me.  Argh!!  We talk and she looks, and looks, and looks.  I tell her that I KNOW she received my fax because SHE called ME after receiving it.  Trying to find something she received in May when she receives 100's of faxes each month is difficult. 

But FINALLY, she finds it!!  She will send it forward to the folks who actually write the checks.  "Good timing, our checks go out in the 2nd half of the month."  Whew!  Good thing that Michael called otherwise I would have continued to presume that payment would be made and my file would have continued to be lost.

July 20 (today):
Michael calls again today.  He wants to inform me that I have a balance of $2240.99 for oncology....  I remind him that payment is coming.  He asks this time if it is payment in full.  I just tell him that it is payment.  I know that I will owe a remaining balance, most likely $271.67 according to the rules of the program.  But last time they did pay a little extra (more than expected), so this time I'm waiting until after they've paid to pick up the rest.

Michael reminds me that the hospital allows four months for payment.  August is that last month and I know that the next hospital bill will be printed in August 10.  I tell Michael that after his last call (and note I didn't expect another call until the beginning of August) that I called the program and that my file had been sitting on someone's desk for a month.  Payment should be coming!!

This is all getting kinda ridiculous.  First I don't receive a bill until mid-May.  Then Bettina mistakenly loses my file under a pile for a month after she had "set it aside" awaiting my phone call.  Michael has called four times already from the beginning of May until today.

August:
I'm sure that I will receive another phone call from Michael even before the rest hospital bill is printed.  Hopefully it will be to inform me of my $271.67 or less balance.  But still for my records, I would like to have a bill which shows the payment the program made and how much I have remaining.

How do you think Michael will react when I tell him that I want to wait until August 11 to pay my balance just so that I can have an undated bill for my own records?

Saturday, July 16, 2011

"Kids Get Arthritis Too" Teams up with NASCAR Driver Todd Peck

Todd Peck always wanted to be a race car driver and Todd Peck IS a race car driver.  He is a NASCAR driver nonetheless.  Todd hasn’t let Juvenile Arthritis steal his dreams and he hopes that he can be an inspiration to other young persons to not give up on their dreams.  Todd understands what it is like to live with disease and how hard it can be to do simple things which others take for granted.  He also knows firsthand what it’s like to have a passion for something.  He wants the children and their families to have HOPE that dreams are within reach even when you live with JA.


At the Juvenile Arthritis (JA) Conference last week in Arlington, VA, I had the privilege to meet 25 year old Todd Peck, a race car driver who has battled JA for the past 10 years.  Joining forces with the Arthritis Foundation, Todd Peck’s No. 96 Chevrolet truck will carry the “Kids Get Arthritis Too” decal in the 2011 NASCAR Camping World Truck Series to bring awareness to Juvenile Arthritis
 
A cool surprise at the conference, all the children in attendance (an estimated 1000 kids) had a chance to sign Todd’s truck which will be racing at the Iowa Speedway this Saturday.  Watch at 7PM EST to get a glimpse of the hundreds of signatures which cover the truck from headlamps to truck bed and to watch a young man who continues to follow his dream.

Read this post in its entirety:

NASCAR Driver Todd Peck Races for Juvenile Arthritis

Friday, July 15, 2011

Tysabri-related PML Death Cases Total 29 in July 2011

Five more patients who had developed PML after using Tysabri have died.  Biogen Idec reports that there are 12 more cases of the brain infection, progressive multifocal leukoencephalopathy (PML).  Total cases of PML equal 145 and total deaths equal 29 to date.

Since I was traveling, I missed the announcement of new cases in June and can not find the information published for last month.  However, based on information in this announcement (seen below), we can deduce how many cases there were in June 2011.

Here is an updated table including total of PML cases reported to date:

Here is a chart showing the rate of increase of reported cases of PML and deaths:

The following is the announcement as published by Dow Jones and republished online by the Multiple Sclerosis Resource Centre (MSRC):


Biogen Idec Inc. reported 12 more cases of a rare brain infection occurring in multiple-sclerosis patients taking the drug Tysabri, sold with Elan Corp, bringing the affected patients to 145 as of July 5.

The Weston, Mass., biotech company said there was five more deaths among those patients, bringing total deaths to 29, and provided updated data on its effort to develop a risk-assessment test for the infection. The incidence of the infection -- progressive multifocal leukoencephalopathy, or PML -- is updated monthly and is closely watched.

The drug is considered to be highly effective, but it is mostly reserved for patients that stop responding to other MS drugs or have an aggressive case of the debilitating disease.
Biogen is developing a blood test for antibodies to a specific virus, JC virus, something that may better determine the chances of patients contracting PML.

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.

Biogen reported that one patient diagnosed with PML among the latest data actually tested negative for the JCV antibody at the time of diagnosis. The company said the outcome was likely because the test was given after use of plasma-exchange therapy, a process that removes large molecules from the body's blood that accelerates removal of Tysabri and theoretically improving the immune response to PML infection.

The company doesn't know why the patient's physician used the test in that way, a spokeswoman said.

The process of testing newly diagnosed patients -- who by definition should be positive with the JCV antibodies -- is a way of testing the effectiveness of the diagnostic tool. Of those tested, 46 out of 47 were positive at diagnosis.

Among patients with JCV antibody status data from prior to diagnosis with PML, 30 patients that developed the infection previously had the JCV antibodies.

Regulators monitor cases of PML as they occur and have repeatedly said that the benefits of the medicine outweigh the risks. Tysabri was withdrawn from the market in 2005 and relaunched in 2006 -- amid advocacy from patients and physicians that stressed it effectiveness -- with a strict access plan that regularly monitors patients.

The overall global PML rate is now at 1.62 per 1,000 patients. Of the total PML cases, 57 were in the U.S., 81 were in the European Union and seven were in other areas.
The company believes that the best way to assess the pool of PML data shows all patients over a fixed duration range of treatment.

According to that method, the rate is about 1.94 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.54 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.

For patients on the drug for three to four years, the rate drops to 1.34 patients per 1,000, but Biogen doesn't believe there is enough data to conclude that incidence of the infection drops after a certain amount of time.

Looked at another way, the rate is 2.41 cases per 1,000 patients on the drug for a year or longer, rising to 3.03 per 1,000 for those on the drug for two years or longer, and dropping to 1.85 for more than three years.

Source: Dow Jones Newswires Copyright (c) 2011 Dow Jones & Company, Inc. (15/07/11)

Thursday, July 14, 2011

Update in CCSVI Studies and Retirement of NMSS CEO Joyce Nelson

The National Multiple Sclerosis Society (USA) has announced the one-year progress reports for the 7 grants which were funded to study CCSVI and MS. The news release is published below.

Also, a NICE committee met today to discuss CCSVI treatment. And Marc Stecker continues to keep us updated in all areas CCSVI related including a Roundtable Video and this weekend's CCSVI Symposium in NYC.

When perusing the bi-weekly "Insider's Perspective" of the Society's Plans (pdf), I noticed that an article in the upcoming Momentum Magazine will detail the retirement of Joyce Nelson, current President and CEO of the National MS Society. I'm interested to see what are the Society's next moves in leadership.



Jul 14, 2011
The first-year progress reports from seven multi-disciplinary teams investigating CCSVI (chronic cerebrospinal venous insufficiency) in MS indicate that they are on track to provide essential data and critical analysis as these two-year projects move toward their completion. These studies were launched on July 1, 2010 with a more than $ 2.4 million commitment from the MS Society of Canada and the National MS Society (USA).

The research teams have already recruited a broad spectrum of people with MS and others to build understanding of who may be affected by CCSVI. In addition they are refining CCSVI imaging methods for accuracy and consistency in order to reliably validate the occurrence of CCSVI and understand its implications in the MS disease process.

Representatives of each of the seven funded teams are part of the Canadian Institutes of Health Research (CIHR)’s Scientific Expert Working Group. Following a meeting of the working group in June 2011, the Canadian Federal Minister of Health, the Honourable Leona Aglukkaq, announced a Phase I/II interventional clinical trial on CCSVI. The working group will provide leadership and advice in the drafting of the terms of reference for the Phase I/II clinical trials in Canada, and will continue to monitor and analyze the data from the seven studies and other studies related to CCSVI and MS around the world.

Regarding the seven funded teams, all have received approval for their studies from the required Institutional Review Boards in the U.S. or the Research Ethics Board in Canada, a first step established by regulatory authorities to protect human subjects involved in research projects. (Read more about steps involved in conducting clinical research.)

Already more than 486 people have undergone scanning with various imaging technologies being used by the studies, including the Doppler ultrasound technology originally used by Dr. Paolo Zamboni and his collaborators, as well as magnetic resonance studies of the veins (MR venography), catheter venography, MRI scans of the brain, and clinical measures.

Because the studies employ rigorous blinding and controls designed to collect objective and comprehensive data, the full results of the ongoing research will be available only after completion of the studies which will involve more than 1300 people representing a spectrum of MS types, severities and durations, as well as individuals with other disease types and healthy controls. In the meantime, several teams are planning to present preliminary results at medical meetings later this year.

“We are pleased that this important work investigating the link between CCSVI and MS is advancing quickly,” notes Dr. Tim Coetzee, chief research officer at the National MS Society. “Results from these comprehensive studies will help inform important next steps.”

Yves Savoie, President and chief executive officer of the MS Society of Canada concurs, “The CIHR’s Scientific Expert Working Group, who will provide leadership and advice in the drafting of the terms of reference for the Phase I/II clinical trials in Canada, will continue to monitor and analyze the data from these studies and other studies related to CCSVI and MS around the world. We are heartened to be moving closer to more definitive answers about CCSVI and MS.”

Details: The funded investigators, who are drawn from a broad range of disciplines ranging from MS neurology, vascular surgery and interventional radiology, report progress in establishing standardized protocols, recruiting and scanning participants and in the development of plans for sharing their findings, as summarized below.

• Dr. Brenda Banwell, The Hospital for Sick Children, Toronto, Ontario:
To determine whether signs of impaired vein drainage might be present early in the MS disease course, Dr. Banwell’s team received approval from the Research Ethics Board and then began enrolling children and teenagers who have MS, and healthy controls of the same age. They are seeking venous abnormalities using non-invasive MRI measures of vein anatomy and novel measures of venous flow, as well as ultrasound. Unlike adults with MS, children are unlikely to have age-related changes in blood vessels, and are less likely to have adult health conditions such as high blood pressure or heart disease, which might otherwise complicate findings. The team’s ultrasound team received training in Dr. Zamboni’s original techniques from the Buffalo Neuroimaging Analysis Center, and they have created ultrasound and brain imaging procedures suited to explore venous drainage in children. Dr. Banwell’s team reports that recruitment is going well, and that they plan to analyze findings only after all 90 participants have undergoing the testing. Read details of Dr. Banwell’s original study plans.

• Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta:
Once her team received Research Ethics Board approval, they began recruiting a cross-section of people with MS who would be compared with those affected by other neurological diseases or healthy volunteers. They have three dedicated ultrasound technologists who have been trained to do scanning as originally done by Dr. Zamboni, and they have refined their scanning protocol. The team is planning to repeat scans on a subset of participants who had been scanned before they made method changes, which will allow them to compare the sensitivity of results pre- and post-training. Dr. Costello’s team slowed recruitment briefly to upgrade to a new 3 Tesla (3T) MRI scanner (twice as strong as standard clinical MRI), and they have expanded their MRI team to include two additional, experienced members. The 3T machine went online in March 2011 and it is now being used to perform MR venography scans to compare against the ultrasound tests. Read details of this team’s original study plans.

• Dr. Aaron Field, University of Wisconsin School of Medicine and Public Health, Madison:
His team is now actively recruiting participants to undergo MR venography and ultrasound techniques originally used by Dr. Zamboni to investigate CCSVI in people with early and later stages of MS, controls with other conditions and healthy volunteers, now that they have received approval of the study from the Institutional Review Board. Their ultrasound expert has received training in the Zamboni techniques. The team has refined its MR venography protocol to account for variations in blood flow that occur with breathing and heartbeats. They have determined that they will use a relatively new contrast agent or dye that will permit high-quality images of the veins in the head and neck and for measuring blood flow in the brain. This will enable the entire MRI/MRV exam to be completed with one time-saving injection instead of two. They have also standardized locations along the length of veins where they take blood flow measurements because they have found large differences in both anatomy and size of head and neck veins. The team has submitted a meeting abstract reporting on their protocol development for consideration at the International Magnetic Resonance Angiography Workshop to be held September 25-28, 2011 in Calgary, Alberta, Canada. Read details of this team’s original study plans.


• Dr. Robert Fox, Cleveland Clinic Foundation, Cleveland:
After his team received IRB approval for using MR venography, ultrasound, MRI and clinical measures in people with MS or who are at risk for MS (CIS) and comparison groups, they began recruiting and scanning participants. The ultrasound team, which underwent training in the technique originally used by Dr. Zamboni, found several aspects of the published methodology ambiguous, and they have standardized the protocol and analysis to achieve consistent results.

They shared their solutions to these methodological challenges in a poster presented at the American Academy of Neurology’s annual meeting in April 2011 (Abstract P01.263). The poster outlined physiological and technical factors that can complicate screening for vein blockages using ultrasound, including that heartbeat irregularities, stages of breathing, head position and pressure applied by the operator could alter results; and that the state of hydration of the subject (whether they drank adequate amounts of fluids) could impact results of several of the criteria used to determine CCSVI. They concluded that these complications may help explain the mixed results reported thus far related to CCSVI and MS, and they have added to their aims a study designed to evaluate the impact of hydration on CCSVI assessments.

Dr. Fox’s team has also gathered autopsy specimens of venous tissue from 9 MS tissue donors and 6 donors who did not have MS. The team first had to develop and standardize techniques for studying these specimens for signs of CCSVI. They are analyzing their data and have submitted abstracts reporting preliminary findings related to this pathology study and their scanning results for consideration at the international ECTRIMS (European Committee for Treatment and Research in MS) meeting in October 2011. Read details of this team’s original study plans.


• Dr. Carlos Torres, The Ottawa Hospital, University of Ottawa, Ontario:
His team obtained Research Ethics Board approval after negotiating details over elements of the informed consent form used to explain the study’s procedures and potential outcomes to participants. The team has been conducting the first phase of scanning, using MRI and MR venography, in people without MS, which will be used to compare with various scans in people with MS. Three team members have been trained using the ultrasound techniques originally used by Dr. Zamboni, and they are on track recruiting more participants for the study. Dr. Torres expects to finalize phase 1 of the study by the end of the summer and then will move on to phase 2, which involves people with MS and other controls. Read details of this team’s original study plans.

• Dr. Anthony Traboulsee, UBC Hospital MS Clinic, UBC Faculty of Medicine and Dr. Katherine Knox, Saskatoon MS Clinic, University of Saskatchewan:
After both sites received Research Ethics Board approval they began to recruit, they have scanned a significant number of participants, and the level of interest in the MS community remains high. Their ultrasound technologists were trained by Dr. Zamboni, and they are also using catheter venography and MR venography to investigate the prevalence of CCSVI in people with MS and controls without MS. After the radiologists at both sites met in February 2011 to ensure the consistency of their protocols, they did a second wave of recruitment and hope to finish all testing before the end of 2011. Read details of their original study plans.

• Dr. Jerry Wolinsky, University of Texas Health Science Center at Houston:
After receiving IRB approval, the team began recruiting participants, and their neurosonographer received intensive training for intracranial and extracranial ultrasound scanning techniques. The team has already scanned a significant number of participants, which include people with different types of MS, people with other conditions, and people with no known health problems. The team is testing whether other imaging methods can confirm the ultrasound findings, while identifying the most reliable technique to screen for CCSVI. Dr. Wolinsky’s team continues to encounter difficulty in recruiting non-MS control subjects who don’t have a personal interest in the purpose of the trial. The executive committee that oversees this study has agreed with the team’s plan to continue aggressively recruit other controls, while at the same time increasing the number of MS participants. In some cases they have also found that some participants who were contacted to go into the next phase of scanning informed the investigators that they had gotten the venoplasty procedure, which made them ineligible to continue in the study. Read details of this team’s original study plans.

Going Forward: These seven teams were chosen by an international panel of experts that included specialists drawn from all key relevant disciplines including radiology, vascular surgery and neurology. The projects were selected for having the greatest potential to quickly and comprehensively determine the significance of CCSVI in the MS disease process. (Read more)

At this one-year milepost the investigators are making significant progress on their overall two-year study goals. The teams are making plans for sharing preliminary results at upcoming medical meetings, and have demonstrated a clear willingness to share technical advice so that the projects can move forward as smoothly and quickly as possible. Their results will help guide the development of a phase I/II clinical trial recently announced by the Canadian Federal Minister of Health to test whether treating vein blockages may be safe and effective in treating people with MS.

The next update on the work of the seven grantees will be reported in six months

Wednesday, July 13, 2011

What will your doctor do if you make an unusual request?

With all the traveling I had been doing and with MS symptoms bubbling up under the surface, I was concerned that a full blown relapse might occur during vacation.  A single pulse of steroids would have been welcome during all of this, as much as steroids are welcome at any time with their pros and cons.

I ended up calling my neuro's office to ask for a prescription of oral steroids to take with me 'just in case' on my last trip, the cruise to Alaska.  I didn't want to wait up and need to rely upon the ship's doctor who would likely have no clue with to do with me, nor the treatment necessary.

Trust is necessary in this situation where I'm calling out of the blue making an unusual request.  Turns out that my nurse practitioner did fill my request and I took a bottle of Decadron with me on the trip.  Fortunately, I didn't need to use the steroids and fortunately I have a good relationship with my healthcare providers.


Read more about this story:

Trust Between Doctor and Patient is Vital: MS, Steroids, and Vacation

Monday, July 11, 2011

Must Have Coffee

It's hard to believe that I've been home for seven days now, sleeping in my own bed with unlimited access to the internet.  So how come I haven't published tons of wonderful information regarding the whirlwind month which has just ended?

I'm tired!!  That's right, I'm sleepy.  Must have coffee.

Although I've been home (technically), I spent the better part of Friday, Saturday, and Sunday morning attending the 2011 Annual Juvenile Arthritis Conference hosted by the Arthritis Foundation in Arlington, VA.  I met lots of interesting people about whom I will be writing posts for MyRACentral.

If only I didn't sleep yesterday away and could stay awake today.  Must have coffee.

I've also been discovering more new MS bloggers.  It's time to compile another welcome post.  (As soon as I can keep my eyes open long enough)

At least I started answering questions at MS HealthCentral last night.  Found some people who posed their requests as much as 3 weeks ago and hadn't received any responses.  I feel bad about that, but can't take full responsibility.  The community is there to support each other, not wait for answers from a small collection of individuals.

ZZZZZ........

Oh, what was I saying?  Oh ya, I need coffee.  It's just been made and sugared up.  If it works, maybe I'll get some of those articles/posts written.  In the meantime, wave "hi" as you pass by this recovering blogger.

And wave "hi" to this Humpback Whale which waved a brief hello to a boat of tourists in Sitka, Alaska.

video

Thursday, July 7, 2011

Carnival of MS Bloggers #92

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

Poetry, Honesty, and Golden Advice

Legacy
by Nadja of Living! with MS
I had a nightmare last night.
In the corner of a dump
Hundreds of plastic laundry containers--
Even in the dream state, I recognize them.
Their contents spilled on the ground,
A graveyard of glass syringes.

That is what I left behind?
Piles of plastic and glass—

Glatirimar Acetate
During a double-blind, placebo-controlled pivotal trial, COPAXONE®reduced relapses by 29% vs placebo over 2 years in patients with RRMS (Relapsing-Remitting Multiple Sclerosis) diagnosed using Poser criteria.

No note to mention this drug only helps some people,
No guarantees.
Try Rebif, Avonex, Betaseron or Copaxone
Try hope…

No note to mention
Some never find a drug that helps--
There is no cure for Multiple Sclerosis.

Teva pharmaceuticals packages hope in blue, rectangular boxes.
30, prefilled glass syringes,
1mL Glatiramer Acetate.
Individually sheathed in smooth plastic casing.
Stacked in rows of 5
Soldiers battling disease?
Nestled beside 30 alcohol swabs
Individually sealed.

Cremate my body.
Only ashes remain.
My legacy—
Just comb through my trash.


The Five Biggest Mistakes I Have Made Since Learning I Had MS
by Marie of MS Renegade

I am a relatively smart person, but I have made some pretty dumb mistakes in my life. A lot of the dumbest of the mistakes came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

MISTAKE # 1Not immediately making long term financial plans.

I was eight weeks into a brand new job in 2005 when I was hospitalized with Transverse Myelitis, which would subsequently lead to my diagnosis of MS. I should have looked into disability right away, even if I wasn’t ready. I should have learned everything I could have about it.

But because my benefits hadn’t kicked in yet, and because I was in complete denial (more about that later), I went back to work way too soon and focused on keeping my job instead of maintaining my health. For almost two years I worked like a dog, twelve hour days, on call 24/7, determined to prove I was going to be the best director in the system despite having MS. And I was. Unfortunately, that did not stop them from eliminating my position the week after I applied for intermittent Family Leave for my MS treatments.

So did I pursue disability then? No, of course not. I found another job within a month, this time commuting into New York City. Ramp up the stress factor! They also eliminated my position within a week of my asking for an accommodation.

So, now I checked into disability, right? No, of course not. I got another job, still pretending I was going to work until retirement, just like I had always planned. After almost two years in that job, their mismanagement caused a huge layoff. Unemployed again. Only now I couldn’t ‘pass’ anymore. Now I needed assistive devices, cane or a walker, to get around. Huge red flag for hiring managers, though of course there is almost no way to prove that.

After a year and a half I am still out of work and, realistically, unlikely to ever return to the work force. My condition has significantly deteriorated and I cannot walk any distance unassisted. I am finally looking into disability, now that my savings are gone and I am in dire financial straits.

MISTAKE # 2:  Not immediately looking into more accessible housing.

I adore my little Craftsman cottage. It is my dream house. I bought it completely on my own with no help from anyone and I have been inordinately proud of it. When we moved in my girls were still in grammar school. I pulled up ratty carpet, painted every room in marvelous colors, pulled down vertical blinds to let in the sun, spackled, planted, repaired, you name it. It is a lovely, sunny, charming place that people settle into and are reluctant to leave, it is so comfy.

It is a relatively big house, four bedrooms, three baths, sunroom, living room, dining room, kitchen, full basement, patio, side yard, front yard, separate garage. I could blow through the house in an hour cleaning it. While running a few loads of laundry. While setting the sprinkler out for the garden. While dragging garbage out to the garage.

I never anticipated that one day it would take herculean effort to get up the three stairs from the back door to the kitchen, which is the only way into the house from the back.  There are even more steps in the front.

Except for those three, which I have to slowly, painfully drag my feet up one step at a time, I can no longer do stairs. Or clean the house. Or dig in the garden. Or paint or do any of the things I so reveled in when I bought my house. I, quite simply, cannot take care of it anymore.

If I had made plans early on to move to a smaller home or apartment, one that would be easy to clean and could accommodate my wheelchair, my life would be so much simpler. Yes, I will miss my house and mourn it forever. But the stress of trying to maintain it is sucking the life out of me. And now the market is horrendous, I will be lucky to get any equity out of it at all.


MISTAKE # 3: Not having an honest discussion with my children about my illness in the beginning.

 I have four children who were ages 18, 20, 28 and 29 when I first got sick. They are good people with good hearts and I know they love me. But I have done both them and myself a disservice by not forcing us all in the beginning to sit down and talk about what MS is, what might happen and what we were going to do about it. I have always been The One In Charge, strong, bossy, doing it all. My husband died when the kids were little and I have misguidedly tried to shield them from pain ever since. What I’ve done is caused even more pain.

My oldest son at the time very gallantly told me if there ever came a time I needed a place to live, he and his then girlfriend, now wife, would have a place for me. But I couldn’t help noticing when they bought their first house, there was no bedroom on the first floor. And what’s worse is, he has pulled away from me and now no longer even speaks to me. And I don’t know why.

My second son will do anything I ask him, fetch things in his pickup, bring over my grandson for visits, anything but talk about how sick I am. On the off occasion something comes up that is unavoidable he says, with genuine feeling, “I’m so sorry Mom”. But any other conversation is taboo.

My youngest, whenever she is confronted with the reality of my illness also says “Oh Mommy, I am so sorry.” But otherwise will not talk about it.

My third child, my oldest daughter, lives with me, with her family. She has become my caretaker. She does the wash I can no longer do, she does the cleaning, I do some of the cooking, but she really manages the house. She works full time and has a five month old baby. She sees my steady deterioration but we don’t discuss it. She is getting burned out.

So do whatever you have to in order to get your family on the same page and to an understanding of the potential progression of the disease. You might never get to a really bad place, but being prepared, together, is so important.

MISTAKE # 4: Not taking people up on their offers to help.

 My amazing friends and my sister have stood by me for decades, through horrible losses like my husband’s death, through joys like new jobs and buying my house, through other crises like losing aforementioned jobs. And through MS. They were there for me in the hospital and afterwards. Always, always, always offering help. “What can I do?” they will ask. And what have I said? “Oh, nothing, I’m good.” I have said this when I am up to my eyeballs in laundry, dishes and housework that was getting harder and harder for me to do. Church asked, “Can we bring you communion? Me: “Oh, no I’m good.”, thinking of all the people who were sicker than I was and needed them more.

It has taken me years to finally admit I need help. And lots of it. I am incredibly lucky that everyone is still around offering, because those offers do tend to fade as time goes on and people tire of asking.


MISTAKE # 5: Not taking care of myself.

I found out I had MS. Did I start eating really wholesome food? Did I do whatever exercise plan fit my abilities? Did I take my myriad of medications regularly and carefully? Did I rest and avoid stress as much as possible? Did I make sure I got plenty of sunshine and fresh air? Did I force myself to get out and socialize so I wouldn't get depressed?

No. No, no, no, no and no.

I kept working incredibly stressful jobs and hours. I did not focus on nutrition. I swam for a while, until I broke my shoulder. But when I couldn’t swim any more, I did not look for an alternate way of staying fit. I avoided friends and stayed in my room, in my bed, with the blinds drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

D. E. N. I. A. L. Oh, and stupidity and stubbornness as well. Yeah, really helpful coping mechanisms.

BOTTOM LINE : You don’t need to panic, but do yourself a favor and make plans. You might never need to use them, but get your safety nets in place. Ask for help. Let people help you (they really like to!). My denial has cost me dearly and is going to cost me more in the long run.


The Best Things I Have Done Since Learning I had MS
by Marie of MS Renegade

Well, the biggest mistakes I made were all pretty big and pretty dramatic. The best things I have done pale in comparison, mostly rather small and practical, but things that have helped all the same.

Best Thing #1: Writing my Blogs

Hands down, the best thing I’ve ever done for myself, period.

I have been writing since I was old enough to know what it meant, but I never made the time or had the courage to put it out there. Oh, in high school I would write suspense stories on the bus. They would get passed from person to person as I wrote the each page. That was fun. In college I did write for the literary magazine. But that was it for ‘publishing’.

Then came blogging.

I had been thinking about writing a blog for a while, but I was really nervous about it. What if people hated it? Hated me? Then I came across a really funny piece on Wiki How called “How to Dissuade Yourself from Becoming a Blogger.” With helpful comments such as “Consider that your voice, even if it is truly a good one, is a tiny peep against the massive wave of tripe out there.” and “Rest easy in the knowledge that it's perfectly okay and respectable to not have a blog at all. Not everyone is cut out to write things that are readable by everyone. The last thing you want to do is contribute more dreck to the universe.”, my insecurity went into overdrive.

Exploring the blogging world I did indeed find awful, awful junk. But just as often I found marvelously written, funny, interesting work. A LOT of self-help blogs. I was in the process of losing weight for my son’s wedding, so in 2008 I took the leap and started a blog with the idea it would be a support system for people losing weight.

Re-reading my earliest stuff, I cringe. I HATE the name, Nourish. The writing is turgid and self-conscious. I am someone who loves to laugh and kids around all the time. This was positively grim. It just wasn’t me. Then, about a month and a half in, I fell and broke my shoulder. Not a usual source of hilarious material. But I wrote about it as a catharsis and that is when I started to find my real, genuine, goofy, voice. And it took off.

I have the best time writing that blog! I have met wonderful people who have become true friends. I have received comments and feedback that is so touching, so kind, so encouraging it has been a real gift. I’ve made myself and others laugh. I eventually started two others, one talking about books and this one, strictly focused on MS. They are a little hard to keep on top of, but still incredibly rewarding.

Writing is something that everyone can do, even if it is not a passion for you. It is a really good way to organize your thoughts and identify feelings. It is a great outlet. And I believe everyone has a fascinating story. So I encourage everyone to write down what is going on in their head, even if it is for no one but themselves.

But my bigger point here is do what you love. You deserve it. It’s time. I love to sew also, but with working and taking care of a family and a big house, just never had a chance. Now I am like a fabric junkie and sew every day. It just makes me so happy. I learned how to knit too. I can never sit still. That wasn’t a problem when I hit the ground running every day, but all that has changed as I become more and more immobile. To use up my energy, I always have knitting with me.

So that is what we need to do when we have a chronic illness. What is it you love to do that has been on a back burner? What is the passion that you have been too busy for? This is the time to cultivate the things that are most meaningful to you. Hey, you deserve it, you have a shit disease!

Best Thing # 2: I acknowledge what my body is telling me.

Me? Listen to my body?!? hahahahahahahaha The only thing I ever listened to was the voice in my head that was running persistently in the future: “I have to do this and this and this and this and after that, this. And then that again.” pant pant pant “And then and then and then…” Never. Stopped. For. One. Minute.

For many of us with MS, we struggle with a fatigue that defies words. There is literally no way that I, even though words are my thing, can convey to someone who has not experienced it what this feels like. Tired, exhausted, spent, none of these even approach it. It is like trying to walk through a wall of mud, almost all the time. Or like all your limbs and your head are attached to weights pulling, pulling, pulling and you have to constantly struggle not to fall over from the pressure. That sort of gives an idea of what it is like.

And then, for me at least, there is the spasticity. The muscles in my legs tighten to the extent it is agony to stretch them out. Especially if I am in the same position for even as short a time as ten minutes. And should I mention the dizziness? A disorienting reverberation that echoes through my body with any movement.

Sounds like fun, huh?

In the beginning, I ignored these symptoms. I DEFIED them. Kept working, cleaning, shopping, doing, doing, doing. And paid the price with regular relapses, needing a course of IV steroids to get me functioning again each time. And having more and more residual deficits each time. It took forever, but I finally allowed myself if not to accept these things, at least to respect them.

So I do the ‘bank’ thing. I am a bank account with a certain level of funds available. Each action I take, getting dressed, taking a shower, fixing a breakfast or lunch, is a withdrawal. I know now I can only make a certain number of withdrawals in a day before I am over drawn. So I budget myself. I rest, I limit. It often feels as though I am indulging myself, but realistically that is not accurate. I am being practical when I rest for an afternoon, because being overdrawn means not being able to move at all. Don't get me wrong, it is hard.  I give up a lot.  It is a huge concession for me, but the payoff is staying functional and suffering less. Less suffering. Hmmmm. I think that is worth it.

Best Thing # 3: My Overbed Table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world.

Before I got my table, because I have to rest so much, I was juggling everything on my bed and nightstand. Juggling unsuccessfully, I might add. So a friend suggested getting “one of those tables like they have in the hospital.” Now I am a nurse. If you are a nurse who has ever worked in a hospital, you have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want that memory lingering over my own personal bed.

As I am wont to do, I resisted. And spilled things and lost things and sat on things because my bed was a disorganized mess. So, taking baby steps, I priced them. And was delighted to find they had a different name: laptop tables!! Well laptop tables never had emesis basins full of puke or bed pans full of poop on them!! What is more, they were reasonable priced. So I bought one. And I love, love, love it.

Ok, I'll admit, it is hideous.  But handsome is as handsome does. It has a tilt top side for my laptop, a solid side for books, cups, plates, etc. and wheels that allow it to be pushed out of the way. The wheels are probably the weakest link as they will not roll over anything thicker than a human hair, but that is just a quibble. I stitched up a big tote bag with half a dozen pockets that hangs over the side of the table to hold my knitting, my i-pod, my mobile phone, CD’s, pens, note pads and unopened, six month old mail. ha ha  Just kidding. It’s really seven months old.

Best Thing # 4: Reach-y Thingies

Even if I wasn’t crippled, I’d still be short. Hard to reach things when you are short. I am also clumsy, whether because of the numbness and weakness in my hands or because I am simply clumsy, I do not know. I just know I drop and/or knock over everything. And, because of being so spastic and weak, I have the darndest time picking up the things I have knocked over/dropped.

So, brilliantly, I bought several reach-y thingies. I do believe that is the technical name for them.

I bought ones that fold in half for the kitchen and bedroom, with wide, rubberized tips so I can pick up a variety of things. For the den, where I sew, (this was extra brilliant) I bought one with a magnetized tip because I am sick of playing 500 pick-up with the cups of pins I am perpetually knocking over. Voila! Now all I have to do when I need a pin is stick my magnetized reacher on the floor and I come up with a dozen pins. I usually come up with a dozen other things as well, but we won’t talk about that.

Best Thing # 5: Admitting I have MS

Crazy, huh? That having MS would be on any sort of Best Things list?

Having MS certainly isn’t the best of anything. I know there are worse diseases out there, and I am grateful not to have one of those. But this one is still pretty bad.

However, by admitting I have it I am free to take better care of myself. Denial is a great protective mechanism for a while. It is a good place to hide while the shock registers in your brain. But, when you’re in it, it is really hard to discern when denial goes from protective to destructive. For me it was destructive when I wasn’t taking care of myself because I refused to accept that I was sick. MS has no tolerance for not taking care of yourself. It is a punishing disease that punishes you even more if you defy it.

Also by admitting I have MS I let other people in.  I am not thrilled with other people knowing.  I hate being what I perceive of as 'weak'.  But the fact is people are good and have been especially good to me in light of my illness.

I still cannot accept it. Acceptance to me suggests consent or approval. Consent? Never. I will resent this disease and everything it has stolen from me until the day I die. So I can't accept it, but I can acknowledge it. I can acknowledge the toll it takes and find a way to balance it. That is how I can be good to me.
__________

Those are my Five and Five, five good choices and five terrible choices. However, I believe no matter what choices we make, we need to cut ourselves a break. All we can ever do is the best we can do. Sometimes we choose something that seemed like a good idea at the time. The important thing is to be willing to reconsider when things are not working out so well.

Please let me hear from you about the choices you have made in managing this disease, or any other chronic illness. The more we share the more we can help each other out.

Photobucket


This concludes the 92nd edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on July 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, July 19, 2011.

Thank you.

Wednesday, July 6, 2011

Home Again!

Finally home after being on the road for the better part of a month. The last 10 days or so of that travel has been dedicated to an official vacation from which the following photo was taken. Special points for anyone who can identify the location.


While we were gone, I learned that 'Brass and Ivory' won the People's Choice award in the 2011 Dose of Digital #dosie Awards.  'How I Fight MS' won Silver in the Judge's Choice award. Thank you for voting and presenting the patient community voice.
There is much I'd like to share with you regarding our recent travels, but for now I am still resting and recovering.  It was very cool to be able to walk 2.5 miles in Juneau, Alaska...


...and another 2 miles in Sitka, Alaska just days later.


And to top off a fabulous trip, we were even able to spot Mt. Rainier (ie. 'the mountain') from over 100 miles away in Mukilteo, Washington.