Tuesday, November 30, 2010

New MS Patients, Solumedrol, and Conversation

Over the weekend, I was working on a couple of posts for MultipleSclerosisCentral.com.  None of them are complete just yet and on Monday morning I was trying to finish at least one.  I even took my computer with me to the neuro’s office to get some work done while I was tied to an IV pole, but it didn’t work.

Why was I at the neuro’s office?  It was time for my monthly dose of IV Solumedrol.  The infusion center was packed full.  Part of that was due to patients fitting in their treatments before the Thanksgiving holiday (like me), the other part was due to the number of patients experiencing relapses.

I walked in at 9:20 AM and found only one empty chair out of six.  The seventh chair was full of pillows and a couple of blankets.  These are important items, so they deserve a chair of their own.  LOL.

Read this post in its entirety:

Monday Morning at the Neurology Clinic: New MS Patients, Solumedrol, and Friendly Conversation

Saturday, November 27, 2010

The World Keeps Spinning

Oh my goodness. What has the world come to? It has been six days since I last posted and I don't feel guilty at all.

Well, hardly anyways.

It's sad. I didn't even give you links to material I've posted on HealthCentral recently. Maybe I'll "recreate" part of the week and do just that.

Or the incomplete posts of new MS bloggers. The list is getting longer and longer and I need to get on the ball.

I'm so far behind. :)

But...the world has kept spinning and all is fine.

One holiday down, and just a couple more to go. Hope all my friends in the US had a lovely Thanksgiving.

We had a nice dinner. Also played a good game of cards between turkey and apple pie. I insisted that we do something besides watch TV to entertain ourselves while we were digesting. It was fun.

Did anybody go out shopping at 3AM for the Black Friday specials? Not me!!!

I was nicely asleep at that time of day and planned to do so late into the morning. However, an incident occurred during which two people rolled over in bed at just the same time causing the unfortunate meeting of an elbow and an eye. That kinda cut short the cozy sleeping atmosphere and required some ice.

Today I should buckle down and do some actual writing. At least that or get my Christmas shopping done online.

Oh, and it just occurred to me, I should go downstairs and decorate the music studio. We have only three more lessons (weeks of lessons) before the official winter break and it would be nice to look festive.

I also need to decide what to do for the kids. Every year I have given the students a small gift at Christmas time. Nothing extravagant, but something tasty or fun. I may actually have to go to a store for this task.

Now my list of "to do's" is getting longer. I should probably stop now before I think of the many other things which need to go on that list.

So that's it for now. I hope that everybody did have a nice Thanksgiving and are enjoying the weekend. The sun is out and although it is cold, it looks to be a lovely day.

P.S. How many times can one person use the word "lovely" in one post? Believe it or not, I edited out a few occurrences upon re-reading. Must be the word for the day....Lovely.

Tuesday, November 23, 2010

Avoid Exhaustion During the Holidays

Are you ready for the holiday season?  Is everything shopped, shipped, and wrapped?  Have you decorated, cooked, partied, and cleaned up?  Are you traveled out, partied out, and fatigued-ly down for the count?

WAAAAAAIIIIIIIIIIITTT!!!.....Hold on, it’s not January yet.  We’ve only just begun the holidays. So far, we’ve had the Canadian Thanksgiving Weekend and Halloween.  Next up, this week, is the American Thanksgiving family/food/football/shopping extravaganza.  Then Chanukah, Christmas, and New Year’s.

Six weeks of go-go-go, high expectations, exhaustion, shopping, gatherings, more exhaustion, chronic illness, and an apparent no-end to the need to have fun, be merry, and to celebrate with an overabundance of, well, everything 

Did I mention exhaustion?  An excess of that, too, if we’re not careful.

Those of us who live with chronic illness, especially rheumatoid arthritis, know that the holidays can be anything but merry if we are not careful to pace ourselves and be smart along the way.  The best piece of advice I could give is to take care of yourself first and foremost. 


Read this post in its entirety:

Living Well with Rheumatoid Arthritis During the Holidays - Avoid Exhaustion and Have More Fun

Sunday, November 21, 2010

November Update - RA, MS, Weight Loss, and Holidays



Correction - Jen is another person who has commented positively on the weight loss. Thanks, Jen, you rock!!

Thursday, November 18, 2010

Carnival of MS Bloggers #76

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

Fall Inspiration, MS Paradoxes, Bowel Management

by Lisa Emrich of Brass and Ivory


Colorful leaves have been falling to the ground for weeks.  Rainfalls have drenched the ground.  The combination has left a gorgeous 'painting' upon my front sidewalk.  The gray stone is etched with images of leaves now blown away on the wind.

Nature is truly beautiful.  In fact, the universe works in glorious ways.

I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.

Read this excerpt from my Monday's post on MyRACentral:
My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....
Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.

So Monday I mention publicly that I haven't been performing as much lately.  Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday.  Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment.  I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me.  The contractor asks me to reserve those other dates, just in case.

Thursday, I was traveling out of town to speak on a panel of health activists at a conference.  While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician.  He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra.  I even mention that they have a concert this coming Sunday.

After leaving the conference and sitting on the train coming home, I get a chance to check my email.  What do I find?  The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.

In general with all of the traveling I've been doing, I have been practicing less.  My playing 'chops' are a bit mushy and out of shape (to be honest).  I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.

However, I am needed to play.  I need to play.  I need to be able to play.  I spend some time Thursday night exercising my lungs and chest, breathing into the horn.  Coaxing a warm sound from the cold metal, vibrations traveling upon the air.  Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.

Friday (today) I go to rehearsal, music unseen awaiting me on the music stand.  I find music from composers unknown, horn parts both exposed and transparent.  Any wobbles or mishaps will be glaringly apparent.

But then rehearsal begins.  The lips cooperate, the abs stay strong and firm.  The blend of sounds created by different instruments reminds me of the falling colorful leaves outside.  I breathe in the warm air of beautiful music.  It feels good to my body.  Good for my soul.

I needed this gentle reminder from the universe that I really am a musician, an artist deep down.  Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations.  For this, I am eternally grateful. 



by Blindbeard of Blindbeard's Multiple Sclerosis Blog

Right now I can think of 2 major paradoxes of MS. I'm sure there are more, but these are the 2 that are torturing me at the moment.

1. I'm always tired but I can never get any sleep. Sure, I sleep for about 5-6 hours a night, and sometimes I can squeeze in an hour nap, but more often I can't get any decent sleep. I probably wouldn't even get those 5-6 sub par hours of sleep at night if my night meds didn't knock me out. Even in the haze of my night drugs, I still get up 2-3 times to pee each night. I have cut down all liquids after 6 pm, but my bladder still wants me to get up to drain those 3 drops that it has produced in the 2 hours since my last bathroom visit. I wake up throughout the night and check the time to see how much sleep I've gotten since the last time I checked the clock. It's never as much as I had hoped to see. And lately, I have been getting up in the 3's instead of the 4's as I used to in the days of yore. I try and stay in bed until 4, but it is a struggle. One morning I spent 25 minutes messing with the dogs before I had to raise the white flag and get out of bed. In those 25 minutes I got the dogs so wound up by plucking hairs off their fluffy buns and trying to stick them up their noses, that it was get out of bed or risk being covered in stinky dog spit. I chose to get up with only 75% of my body covered in stinky dog spit. I didn't want the dogs to start plucking hairs off my fluffy buns and try to stick them up my nose. I can dish it out but I can't take it.

2. My MS Hug squeezes me so tight that the only way to get any relief is to wear something tighter. Across my back and chest, right where a bra strap goes, is a line of pain and tightness that is only made bearable by squeezing the sh*t out of it. I have been wearing my tightest cast iron sports bra to help ease the pain. It is so supportive that I could use a jackhammer all day and not get the slightest jiggle out of my unmentionables. Even now, I have an Ace bandage wrapped so tightly around my chest that I can't draw a deep breath, but if I don't wear it, I can't draw a deep breath from the pain and tightness from the hug. I have Sugarbowl and Princess beat on my back and rub it as hard as they can. The pure ecstasy from that makes me moan and groan like I'm in the deepest throes of passion -- not exactly something I want to do with my sister and niece. They are good sports about it and take turns so one can rest her arm while the other beats the crap out of me. Sometimes abuse feels sooooo good! Sugarbowl is the best when it comes to any MS related help I need. She has the arm support thing down just right. She understands that I need a strong arm that I grab, not grabbing my arm like my mom does. My mom grabs a hold of my arm and runs off, dragging me behind. Sugarbowl lets me take her arm and lets me set the pace. You would think that a woman who works in a nursing home would know better than to drag a gimp along, but she hasn't figured that out yet. Sugarbowl also has the beating of my back down to a science. She knows to work it across the line of pain with a combination of hard rubs and deep pounding of her fists. I was in so much pain the other day, but she had to go to work, and I wished I could afford to pay her to stay home and work me over like she was tenderizing meat. Alas, I could not afford to have her stay home so I wore a corset of Ace bandages all day, waiting for her to get back home and abuse me some more.

Like I said, these are the only 2 paradoxes that come to mind right now, only because they are the 2 that won't let me forget they exist. If you have others, please let me know. I'm always interested in others' sufferings, even though I feel like I'm running a huge risk by asking. I'm afraid that my body will decide that it needs to add those problems to my already impressive repertoire of pain and agony.


by Diane of A Stellarlife

Constipation affects many people with multiple sclerosis.  I read all the "...most of the people..." symptoms as soon as I got my diagnosis and began my planning.

All my life I had been very regular.  Up in the morning, deposit in the loo, off for a run, home for my day to begin.  Even as a child, up in the morning, loo, on with day.  I took it for granted.  Never imagined anyone else had a problem.  Then I saw a photo of my uncle Arthur sitting on the john, chin in hand and written on the back was: "The Thinker."  My questions about why that was so funny led to my first understanding that for some a daily quick deposit is not so quick.

Then I read "the word" in an MS pamphlet.  Next I read how to avoid this problem, just in case it struck me.  I could understand how easily it might happen, since our ability to move becomes compromised.  When I needed my first scooter, I experienced the big C.   (Well, I DID experience Cancer at that time, but for this story that "C" is constipation.

WARNING GRAPHIC WORDS AHEAD
I no longer found the morning dump so reliable and I learned (after 40 years) that the word my mother taught me was "Grunty", NOT "Grunny."  Imagine my shock and embarrassment.  I had never needed to "grunt" before, but I certainly heard that a lot in my work place restroom.  (I kept asking friends, "Are they SICK?"  But, learned it was expected during most deposits. SHOCK)  So, then I had to take action.

First I analyzed my stools. (I warned you--this is not for the meek.), and noticed they were very dark.  Dark and hard as a rock.  I then examined my diet.  Yes, eating enough fruits, vegetables, whole grains...so I increased them all.  No change.  I swore Mr. Hankey was hard as iron.  LIGHT BULB MOMENT!  My multi-vitamin was IRON PLUS!  I thought that would be good for my MS.   Switched to non-iron.  Started reading labels of all the cereals and food I ate "iron-enriched" UGH!  I would probably explode in my next MRI!!

After a month of no extra iron, my stools returned to normal!  But, moving the bowels was still not quite right.  I remembered reading in Katherine Hepburn's autobiography that she had something called, "Psyllium," every day and she started her day with a bowel movement and dip in her lake.  I told this to my partner, who laughed and explained that was what Metamucil was.

AH!  I had seen many ads for this Metamucil stuff and although I lacked a lake, I would take it every day like my hero-actress (heroine-actor? eesch) Kate.  I began.  Not much happened. I called my doctor, "Could I take a higher dose?"  He agreed that might do the trick.

While I didn't like the consistency or color (orangish) of my poo (I WARNED YOU) I was once again going very easily.  Too easily.  It would come too fast and without warning.  What a messy situation for someone using a walker and unable to run to the loo.  I was starting to get discouraged.  Then, another light bulb---my belief was that simply drinking all the water necessary for the Metamucil dose was way more water than I'd ever drank at one time---what if I upped my water to that level and dropped the psyllium?  My fiber intake had been enough for many years...

It worked.  My bowels now move daily and are of perfect color and consistency.  I can even control what days I might want to hold off (like for doctor appts.) and up the next days water.  Such a simple fix.  I still have a nervous bowel---if I am anxious about something (like a visit from strangers) all bets are off and I can't ALWAYS make it in time to the loo, now that I must use a power chair, slow moving lift chair, transfer---but I am getting better each year at knowing when to start heading for the loo.

Yes, I discussed this with my doctors.  The nasty neuro I dumped, explained how MS effects the bowels and she showed me a poster on her wall that points out all the nerves there--wow!  Who knew?  She offered NO solutions or suggestions. My primary guy was his usual, "That is interesting."  He is still learning.   AND he is open to anything.  He KNOWS he is not God.  He also knows ME and how I experiment on myself.  My current neuro just brushed me off as usual.  She doesn't even see me anymore--has shoved me onto her rehab doc.  (I refused to be scared by her dire predictions for me and refused her drugs of choice.  She hates the sight of me.)

So...water, water, water, every other day 64oz, 32+ in between. Looking back, I really don't think this is MS related for me at all.  As a child I rarely drank and got my water from food, hense, I was over-weight.  When I got a handle on my weight, I began drinking water whenever I felt hungry.  I was not hungry, I was thirsty.  Since moving became difficult, I lowered my water intake without realizing it.  (To avoid extra trips to loo.)

When people tell me they just got DX MS, I tell them to drink more water.  Now, with the idea that iron is backing up across the blood-brain barrier, I wonder if that hurt me.

Too much IRON BAD.  WATER GOOD.  True for just about everyone!


This concludes the 76th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on December 2, 2010. 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 30, 2010.

Thank you.

Comments for this post.

Of the 75 Tysabri patients who developed PML, 15 patients have died to date.

The number of Tysabri patients who have developed PML (progressive multifocal leukoencephalopathy) has reached 75 as of November 2, 2010 says Biogen Idec, Inc.  The company also reports that an additional death among Tysabri/PML patients has occurred, bringing that total number of cases to 15.
"The number of PML cases is important because if the infection rate climbs too high, the drug's sales growth may drop. Regulators have said that they watch the cases, but have concluded that the benefits of the medicine to MS patients outweigh the risks.

The overall global PML rate is about 0.96 per 1,000 patients, a company spokeswoman said, which still falls within the 1-in-1,000 rate previously seen in clinical trials and implied on the drug's label. But the rate has been rising, and multiple Wall Street analysts raised concern about the trend on Wednesday as the MS market is becoming increasingly competitive."
Biogen reports that as of Sept. 30, 2010, there are 55,100 patients using the drug around the world and that approximately 75,500 patients have used the drug since its launch.  Of the 75 total cases of PML, 33 cases were in the United States, 38 cases were in the European Union, and 4 cases were in other areas. 
"The most recent data update translates to a rate of 1.49 cases per 1,000 for patients on the drug for a year or longer, but rises to 1.97 per 1,000 for those on the drug for two years or longer.

Looked at another way, the rate is about 1.49 cases per 1,000 patients on the drug for between two and three years. The incidence is about 0.37 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."
According to these growing numbers, the death rate of Tysabri/PML patients is at 20%.  I wish that we knew the condition of the other 80% of PML patients.  Unfortunately, I do not know the breakdown of the location of the 15 PML-related deaths.


Source: Multiple Sclerosis Resource Centre and  NASDAQ Copyright (c) 2010 Dow Jones & Company, Inc. (18/11/10)

Edited to Add:
The distribution of PML cases and number of deaths reported by Biogen and/or FDA is as follows:
Month reported; Total # PML cases; # in USA, # in Europe, Other; # Deaths
Nov 2010 - 75 total - 33; 38; 4 - 15 deaths
Oct 2010 - 70 total - 29; 37; 4 - 14 deaths
Sep 2010 - 68 total - 28; 36; 4 - 14 deaths
Aug 2010 - 63 total - 25, 34; 4 - 12 deaths
July 2010 - 58 total - 22; 32; 4 - 12 deaths
June 2010 - 55 total - 20; 32; 3 - 11 deaths
May 2010 - 49 total - 19; 27; 3 - 11 deaths
April 2010 - 46 total - ?; ?; ? - 11 deaths
Mar 2010 - 42 total - 15; 24; 3 - 9 deaths
Feb 2010 - 35 total - 11; 21; 3 - 8 deaths
Jan 2010 - 31 total - 10; 19; 2 - 8 deaths
Nov 2009 - 27 total - ?; ?; ? - 5 deaths
Sep 2009 - 24 total - 8; 16; 0 - 4 deaths
July 2009 - 11 total - 3; 8; 0 - 1 death

Here is the Morning Equity Briefing published on Davy Research website regarding the new PML cases and their impact on Tysabri usage.

Elan Corp (ELN US)
Monthly safety update on Tysabri
Jack Gorman
Closing Price: $5.55 Rating: Outperform 30/06/09

FACTS: The latest safety update on Tysabri was released last night (November 16th). Five new PML cases were confirmed during October and this brings the total to 75. Four of the cases were in the US, bringing the total there to 33. There have been 38 cases in the EU and four in the rest of the world. Fifteen of the 75 patients (20%) with PML have died.

ANALYSIS: The new cases have increased the overall incidence of PML in those patients exposed to Tysabri to 0.96 per 1,000 from 0.91 per 1,000. Observing the data by treatment epoch, the new cases look to be in patients with at least 25 infusions.

Distribution of PML patients by treatment epoch has stayed broadly consistent for some months now (note that all data are per 1,000 patients exposed). For 1-12 months, the rate remains at 0.01, indicating little or no PML. For 13-24 months, the rate is 0.37 compared to 0.38 previously. For 25-36 months, the incidence rate remains highest at 1.49, up from 1.44. The 37-48 month increased from 0.93 to 1.01 but remains lower than the 25-36 month cohort.

The data also outline, to 95% statistical confidence levels, what the estimated upper and lower bounds may reach for each of the treatment epochs. There is little change in the mix here and it continues to hover close to 2.0 for the longer durations.

DAVY VIEW: We would not expect that this monthly data will materially change physicians' or regulators’ views on Tysabri’s risk/benefit profile, as there looks to be no sharp increase in either the actual PML rate or the statistical upper bounds of incidence.


UPDATE: Biogen announces updated Tysabri/PML statistics.  The total number of cases is now at 85 patients with the addition of 6 new cases reported in January 2011.  The number of deaths holds at 16 patients.  Of the total PML cases, 36 were in the U.S., 44 were in the European Union and five in other areas.

Tuesday, November 16, 2010

Conversations from the Studio

November 15, 2010

Setting: Horn Student T who is in 5th grade and myself, the horn teacher.  T is very smart and quick to learn, but sometimes is challenging to keep on task. 

T: So how long have you played the french horn?

Me: I started playing horn in 6th grade.

T: How long is that?

Me: Let's see. I guess you turn 12 in 6th grade, right?

T: A-huh

Me: So.......I've been playing the horn for 30 years.

T: You're 42!?

Me: Yes, I am.  Wow, 30 years is a long time isn't it?  I hadn't thought of it that way until you asked.  I guess I've been playing for a very long time.

Me: Now let's get back to work.

Kids are often curious about the things which might be "taboo" to talk about.  Reminds me of when I was student teaching.  We always went by our last names and it seemed to be the kids' personal challenge to discover what your first name was.  So much time was spent before or after class shooting down the clever inquiries.

As long as it's said with respect, my students can call me by first name, last name, title, or any combination.  Names don't matter so much.  Knowing how old I am doesn't matter so much.  Developing an open relationship in which kids know that their questions will be answered directly and that it's ok to ask them certainly does matter.

Next time, the question from T may be about how the horn works a certain way, or why f# always has to come first in the key signature, or any number of questions.  Curiosity is important when studying music.  Now if only T would practice more at home, his parents and I would each be very excited.  ;-)

Friday, November 12, 2010

Nature's Glorious Gifts, Like Music for the Soul


Colorful leaves have been falling to the ground for weeks.  Rainfalls have drenched the ground.  The combination has left a gorgeous 'painting' upon my front sidewalk.  The gray stone is etched with images of leaves now blown away on the wind.

Nature is truly beautiful.  In fact, the universe works in glorious ways.

I am often the beneficiary of forces which keep my life balanced and moving forward, always leaving a smile on my heart.

Read this excerpt from my Monday's post on MyRACentral:
My voice has gotten stronger over the years since disease has moved in.  I used to be a shy person who never spoke up or tried to draw attention to myself.  However, I was fairly comfortable when I had a musical instrument at my hands to speak for me.

Lately, I’ve not been performing music on stage as frequently, but I have been using my voice to speak to people....
Many times in my life, I have experienced a minor disappointment, such as a student quitting lessons, only to have two new potential students call the next day asking about lessons.

So Monday I mention publicly that I haven't been performing as much lately.  Then Tuesday, I receive an email offering me the opportunity to perform in a concert this Sunday.  Unfortunately one rehearsal is scheduled on Saturday morning, during the very same time that I have a prior commitment.  I tell the contractor about this conflict, but mention that I am available for the other services (rehearsals and performance) if he still needs me.  The contractor asks me to reserve those other dates, just in case.

Thursday, I was traveling out of town to speak on a panel of health activists at a conference.  While at the event, I happened to meet up with someone and we had a long conversation during which I talked about being a musician.  He asked about the types of groups I play with and I mention my favorite gig - performing with the National Gallery of Art Orchestra.  I even mention that they have a concert this coming Sunday.

After leaving the conference and sitting on the train coming home, I get a chance to check my email.  What do I find?  The confirmation that I am needed to perform with the NGA orchestra this Sunday although I will miss one of three rehearsals.

In general with all of the traveling I've been doing, I have been practicing less.  My playing 'chops' are a bit mushy and out of shape (to be honest).  I was almost relieved that I might not be able to play this concert but not for the reason of turning down the opportunity.

However, I am needed to play.  I need to play.  I need to be able to play.  I spend some time Thursday night exercising my lungs and chest, breathing into the horn.  Coaxing a warm sound from the cold metal, vibrations traveling upon the air.  Praying that the body takes over and demonstrates more strength than I should be allowed to expect with the neglect it has suffered.

Friday (today) I go to rehearsal, music unseen awaiting me on the music stand.  I find music from composers unknown, horn parts both exposed and transparent.  Any wobbles or mishaps will be glaringly apparent.

But then rehearsal begins.  The lips cooperate, the abs stay strong and firm.  The blend of sounds created by different instruments reminds me of the falling colorful leaves outside.  I breathe in the warm air of beautiful music.  It feels good to my body.  Good for my soul.

I needed this gentle reminder from the universe that I really am a musician, an artist deep down.  Just as nature has left a piece of art on my sidewalk, the universe continues to color my life with surprises and affirmations.  For this, I am eternally grateful. 

Thursday, November 11, 2010

Pepsi Refresh Grand: Vote for Non-Mainstream MS Research Institute

The Neurologique Foundation, a nonprofit organization dedicated to patient-centered care, education and research, is applying for a Pepsi Refresh Grant in the amount of $250,000 to Establish a Non-Mainstream MS Research Institute: CCSVI, LDN, etc. The director of Neurologique, Dr. Daniel Kantor, is "committed to developing non-mainstream approaches focused on pverwhelming patient desire for new and innovative approaches to treating MS (Multiple Sclerosis)."

Goals:

  • To establish a non-mainstream MS research institute
  • To promote patient involvement in research goals
  • To raise awareness among neurologists concerning alternate approaches
  • To act as a model for other autoimmune disease states

Overview:

Multiple Sclerosis (MS) affects over 450,000 Americans, yet there is no cure. While there have been advances in mainstream treatments of MS, there is an outcry among patients for the development of other treatment avenues. Recent discoveries suggest that non-mainstream approaches may be beneficial in developing treatments and an eventual cure.

A non-mainstream MS research institute would allow patient input into exciting ways of treating MS. A few examples include CCSVI and LDN. Research into these treatments would allow for more definitive therapies and eventual adoption and acceptance by treating neurologists.

All research needs funding, and the Pepsi Refresh Everything Grant may help expand interest in this exciting new field of patient-centered research. It is only through well designed research that people with MS can have readily accessible care that the entire MS community deserves.

Deliverables:
  • Design of clinical trials 
  • Input from patients
  • Public awareness campaign

How will the 250K be Used?

  • $55,000 - Research coordination
  • $175,000 - Conduct research trial
  • $20,000 - Public awareness campaign (patients, neurologists, legislators)
Budget Notes: The budget will not cover Dr. Kantor's salary, which will be donated pro bono by him to the project. The budget will not cover services that we are applying for from in-kind donations. The budget will not cover administrative costs, which Neurologique will donate pro bono to the project.

Message from Dr. Kantor:



Voting is Open through November 30, 2010.

Wednesday, November 10, 2010

Patients for a Moment hosted at Sick Momma blog

My good friend Aviva of SickMomma hosts this week's Patients for a Moment blog carnival.  Aviva wanted to know what people look for in a doctor.  Head on over to see what folks had to say.  Our diseases may be different, but our stories can be very similar.

Thanks for hosting, Aviva!  We will definitely have to meet at some point in the future.  Being thisclose will not do next time.  LOL. 

Tuesday, November 9, 2010

The Big Blue Test: Watch a Video, Help a Child

My friend Manny Hernandez of Tu Diabetes and the Diabetes Hands Foundation has come up with a terrific plan to help tons of kids with diabetes get the insulin they need.
The Big Blue Test event is simple: watch the video below and you’ll help a little one get healthy. It’s just that easy.

On November 14, 2010, World Diabetes Day, take the test yourself if you have diabetes.  Share your results.





When you take 1:49 seconds to watch this video -- and pass it on -- Roche Diabetes Care will make a donation for life-saving insulin and diabetes supplies to get to children in need.

Roche joined forces with the Diabetes Hands Foundation to underwrite the Big Blue Test above - to accomplish two aims. 1) Encourage people with diabetes to see the benefit of moderate activity. 2) Help the Foundation fund two vital diabetes charities.

For every view the video receives - between now and November 14th, Diabetes Day - Roche is making a donation to the Diabetes Hands Foundation the entirety of which will be used to assist the Life for a Child program and Insulin for Life. These two global, humanitarian assistance programs provide ongoing care and diabetes education to children in the world's poorest countries - care essential to stay alive.

Donations provide children with life-sustaining insulin, syringes and blood sugar monitoring equipment, teach parents how to care for their child's diabetes, cover transportation costs for supplies, ensure continuous infrastructure improvements and help to develop new programs. Currently more than 25 such programs keep children alive around the world.

With 100,000 views, Roche will give the Foundation its largest donation - $75,000.

At the time of this posting, the video has 67,000 views.  Only 33,000 views to go before Sunday!!!

Please view and help spread the message.

Monday, November 8, 2010

“How did you find your doctors?”

That is a question I’ve been asked before.  A quick answer would be that - “I got really lucky.”  Further thought would reveal that not much of anything is pure luck, but that circumstances do have a lot to do with choices and outcomes.

Eyes:
First priority upon moving to the DC area back in 1998 was to find an opthalmologist.  Since the age of 4, I had the same eye doctors.  I literally grew up with this “eye family” and witnessed several additions to the office, but only one retirement in 30 years.  How my parents chose these doctors, I’m not sure. 

So where did I turn to try to find a new eye doctor in a different state?  I asked my current opthalmologist for a recommendation.  He knew of a classmate/colleague from Indiana University Eye Institute days who practiced in the area.  So that’s who I chose.

In the past ten years, a younger optometrist joined the practice and eventually the recommended doctor retired.  The younger doctor and his wife (who also happens to be an optometrist) bought the practice, so now they are my eye doctors.  Early on, the younger doctor has worked hard to learn more about MS and eyes which made me like him more.  However, recently I do think I might be better off with an actual opthalmologist, especially since the eyes continue to be a concern.

General:
After obtaining health insurance in 2000, (yes I had a gap of about a year between student insurance through college and individual insurance obtained on my own), the next priority was to find a good internist or general practitioner.  My mother loves things like Consumer Reports for conducting research.  Each year the Washingtonian magazine publishes a listing of the top doctors in the area, as recommended by other doctors.

I cross-referenced the Washingtonian list with my insurance preferred provider list and looked for someone close by.  During our “get acquainted” appointment, I explained my previous experience with optic neuritis and jumped into my prediction of needing to come back in about 2 months to get my yearly anti-depressant prescription to combat what I still tried to think of as Seasonal Affective Disorder.  He went ahead and wrote a prescription on the spot, but probably wanted to get my health records from the college Medical Center.

How much jumping into my experience with depression right from the start may have affected how he viewed my reporting of symptoms, I don’t know.   In fact, I hadn’t even thought about there being a connection until just right now as I’m writing this. 

This was the primary care doctor who missed early flares of rheumatoid arthritis because my blood is negative for rheumatoid factor and my joints weren’t visibly red, hot or swollen at the time.  I just knew that something wasn’t right.  I went home to try to self-treat with a variety of OTC creams to take away the pain and stiffness.

This is also the doctor who missed a growing case of pneumonia one Friday when I finally went in.  It was probably the answer to one question which caused him to send me home, telling me that I was over the worse of the virus infection I had.  I had felt marginally better on that Friday than the previous day.  And, he thought my lungs sounded clear.  I was in the ER on Sunday unable to lay back due to the crude which was filling up my lungs.  Trust me, pneumonia really sucks.

Sometime after that a young doctor joined the practice and patients were asked if they were willing to see her.  I was fine with it and would see either doctor interchangeably over a year or so.  This younger doctor is now my primary care doctor and I couldn’t be happier.  She listens to me, works with me, and takes me seriously.  I like her.

Neurologist:
Even before I went to have an MRI done, my primary care doctor printed out a list of local neurologists just in case I needed them in the future.  When she called me the morning after my MRI scans, she wanted me to pick one of the doctors and make an appointment soon. 

Again, I cross-referenced this list with my insurance company’s list.  Each doctor/office was a preferred provider.  Now this is where luck came in.  I called the offices to make an appointment.  I went with the neurology office who could get me in the quickest.  After my initially-assigned neurologist diagnosed MS, I was able to switch over the the MS specialist at the same center. 

I lucked out and have a great neurology team of doctors and nurses.  I wish that others could be so fortunate.

Rheumatologist:
During the time that it seemed something really was going on my with my hands and body, I wondered aloud if I shouldn’t consult a rheumatologist.  My mother had found an excellent doctor (listed in the Washingtonian magazine, of course) and she asked if new patients were being taken.  The answer was NO.

When a hand surgeon wanted to refer me to rheumatologist, he asked where I live.  Great! He says.  A wonderful doctor is in your neighborhood.  This happened to be my mother’s doctor.  This time when asked, I got an appointment.  Actually the hand surgeon said that if I had difficulty to call his office and he would call the doctor personally to get me in.

I have a great rheumatologist who I wouldn’t trade.

Doctor Shopping:
Each time I needed a new doctor, I did ask for a recommendation from a trusted doctor or referred to a listing of top doctors in the area.  I didn’t go online and research these doctors.  I didn’t consult doctor rating sites.  I didn’t even ask friends for advice.

But, somehow, I ended up with great doctors who put me at the center of care.  My neurologist and rheumatologist send updates to each other and my primary care doctor after each visit.  Everybody is “in the loop.”  These guys have my back for which I am extraordinarily thankful.

By the way, I just now looked up my doctors in HealthGrades.  They are rated at 4-4.5 stars.  It is only the questions related to office environment or office friendliness which got lower scores.  For one office I understand, simply based on where the office is now located.  Definitely not fancy by any means.  And when I have a real need, I can get an appointment same-day or next-day for two of my doctors.

I’m truly fortunate.

How about you, how did you find your doctors?

Sunday, November 7, 2010

Interview with Marc, Wheelchair Kamikaze (Part Two)

Welcome back.

Switching gears. There are no proven effective treatments for PPMS, could you give us a brief run-down of the treatments you have tried over the years? Have any of them proven effective for you over time?

I can give you a rundown of the treatments I've tried over the years, but it won't be brief. Let's see, there was Rebif, IV steroids, CellCept, Tysabri, Rituxan, plasmapheresis, intrathecal methotrexate, the liberation procedure, natural and homeopathic remedies, dietary changes, intense physical therapy, and even anti-evil eye ornaments. As a friend of mine once said, at this point I'd be willing to crawl up the ass of a fat man if there was even the slightest chance it might help beat this disease.

At the moment of my diagnosis, I swore that I would fight this thing with everything I had. My MS neurologist is known as one of the more aggressive doctors out there, and I'm fine with that. Even though there are risks involved with all the treatments I've tried, at least there was the possibility, however remote, of some upside return. I know with some certainty where doing nothing will lead, and it's not a pretty place. If I'm going to go down, it will be with all guns blazing, both fists bloodied, and a steady stream of curses leaving my lips.


Read this post in its entirety:

Wheelchair Kamikaze: Marc discusses Life in NYC, Progressive MS, Relationships, and CCSVI (Part Two)

Friday, November 5, 2010

Carnival of MS Bloggers #75

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

Courage to Speak Up, Speak Out, and Share

by Ragged Warrior

I was trapped in a toilet today. It was scary.

While out and about at an appointment today, I decided to find a salon for a shampoo and cut. I have been so weak lately that I have been unable to wash my hair myself. Since an entire week had passed since I last washed it, I thought the salon idea was a good idea. Unable to find one of the ‘cheap chain salons’ I found an independent salon that had a sign flashing: ‘walk-ins welcome’. OK, so I thought I would just ‘walk-in’.

The only problem was that it was next to a gym with full length glass windows. Ugh!!

I decided to waddle past the gym with my head turned the opposite direction. I don’t know about you, but I don’t want to be faced with skinny people jumping up and down for no reason. Plus, I didn’t want them to think that I cared if they pointed their finger at me and started laughing. So. I held my head high——and looked the other way while passing the spandex people.

I made my way to the welcome desk and asked if they could fit me in. Little did I know that the halls and booths in this salon were only 1 inch wider than my walker. And nothing could have prepared me for what would soon happen.

The receptionist said “yes, Tracy can help you in a few minutes”.

“OK” I replied.

I entered the salon area and pushed my walker through the aisles knocking brushes, hair sprays, and applicators to the floor. Women of all sizes and shapes quickly took refuge in all the nooks and crannies they could find, while beauticians pressed their bodies flat against their workspace. I pretended I was OK, but the truth was, I was struggling for each step. They turned away from me; perhaps hoping that they would never be in such a condition. People dressed in suits walked out of their offices, only to see me and turn back around. I hate it when faced with my own mortality, how about you? Plus, you know when you are traveling down the highway and you come upon a ‘wide load’, well it was sorta like that. They kept moving ’round and round’.

Suddenly, I wondered if my bladder might be full. You see, when you have MS, things like bladders don’t work like they are supposed to due to nerve death.

Some ladies are unable to control their bladders and have to carry various items with them. My friend has this. There is a special protocol that these ladies follow. First they use their containment buoys, “bam bam” my friend says, placing the buoys around her leaks. If that doesn’t work she throws trash, straw, hair and golf balls at the leak. The last resort is a concrete hat—it’s so hard to mix up the concrete though. When I am with her I remember to bring rags.

Then there are people like me. We have to push on the darn thing to get it to empty. And that is where our story begins.

So, I nonchalantly enter the handicapped stall and secure my walker. I sit down and begin to think about how I will complete this task. I muster up enough courage and plan the attack. I began pushing with all my might when to my horror, the toilet seat changes its axis violently, with no thought of my personal needs.

I cry out to God.

“Oh Lord, please say it isn’t so please God”.

It’s a true disaster, like an earthquake with Niagara Falls and the Hungarian sludge thrown in for good measure. I begin the inevitable ‘Slip n Slide’ down to the floor, my foot pushing a roll of toilet paper to the other stall. I grab the toilet paper holder and inch my way back up the toilet.

“Oh God!! NO NO NO” I cried!! Please help me Lord…..Jesus what do I do”.

This is where retroactive prayer comes in.

I say to God: “lord…..could you please pretend that I prayed about this this morning”?

I muster my strength to assess the damage. “Lord Jesus please help me” I muttered to myself.

“Oh no Lord….please tell me it isn’t on my clothes…what will I do”. Peeling off layers of clothing reveals the truth, it’s everywhere, in the front and back and down a leg. I am downhearted and blue.  What will I do?
I panic looking for a back door that I could escape from—there is none.

Oh, maybe there are…..paper towels………..oh man—it’s the blower type. I can’t get my rear up that high plus it would look suspicious if I was caught.

I’m trapped–I must plan an escape.
I could stay here and ask that they call 911.
I could glide on the wet path to the front desk and tell them I had a phone call of a serious nature.

OR

I could walk with my head held high, and have the girl do my hair. So, I decide on the latter, I will just pretend that nothing is wrong. If I talk enough, smile enough or laugh enough maybe she won’t notice.

So, that’s what I did. Did they notice? I don’t know. Am I going back? Not in a million years!

Did this really happen? Oh yes!!!

From now on, my friend and I will tag team.


from Carolyne's MS Odyssey

You know, it’s funny – most people would not describe me as a person in any way fearful of speaking her mind. In fact, quite the opposite – I am considered, as someone at work once put it, a “calm, funny, and politely pushy woman”. I took that to mean an assertive woman who gets things done! ;)

As MS’ers, we each have to be our own advocates, and speak out about our health, speak about our needs, ask about options, and so on. We must find our voices when dealing with our situations – especially with the medical community. I am well known within my own circle as someone who speaks her mind, challenges doctors if I feel it is necessary, and is generally not afraid to openly discuss any aspect of health situations & improving health with people. OK – I am pretty much not afraid to discuss anything! ;)

That being said, I had another “a-ha” moment the other day when my sister and I were  discussing the peace of chanting in yoga. I had never felt comfortable doing any chanting – but I enjoy listening to others chant. And I only whispered “namaste” very quietly, feeling too shy to speak it loudly enough to be heard. Namaste means “the spirit in me honours the spirit in you”. So when my sis challenged me to speak my inner voice – voice the word Namaste with feeling…well, I froze. The very thought made me tense up. And it made me wonder – why? Why was I afraid to speak loudly enough to be heard?

I pondered this in the woods the other day. SuperMike and I drove down to the south shore, quietly enjoying the brilliant fall colours and each other’s company. At his camp, while he closed things up, I wandered around a bit, and smelled the crisp air, shuffled my feet in the wet leaves, and simply breathed. At one point, I closed my eyes and whispered “namaste” to the trees around me, reveling in the feeling of nature and the sound of the wind through the trees. Did I figure out why I was nervous about speaking out loudly? No. But it struck me – I had not been down in that area of the province in over two years – since shortly before my accident. Wow – had I ever missed it!

Well – I have begun saying “namaste” more loudly – loudly enough so that the people beside me can actually hear me. And you know what? It is actually a freeing & personally charging sensation! Who-da thunk something so simple could feel so empowering? And it is already translating into other aspects of my life – I found myself saying “No – I need my rest” to people at work requesting more of my time than I could afford to give; I found myself speaking up in situations where I had been taking a back-seat roll. I am the kind of person that will put herself last in efforts to make sure those around her are comfortable and happy. Finding my voice, for me, meant finding the voice that says “I need to take care of me, too – and that’s ok.” For me, I had to embrace that “namaste” means also to honour my own spirit… and follow whatever form that may take in the moment.

That’s exactly what we have to do with MS every day, too, isn’t it?
Namaste.
Carolyne


from Kaleidoscope Muff


Since the blog police didn’t arrest me for my last post, I’ll continue with the second part of this verboten subject. Now, while the bladder blues started for me a while before I began to seek answers about my walking, the bowel bouts didn’t begin under I was going through all the testing. At first – here we go with denial again – I assumed it was caused by the anxiety I was experiencing, but as I researched on my own, that item kept cropping up. If I couldn’t discuss my dampness problem, I sure as H%*# couldn’t talk about this one!

My first real ‘situation’ occurred once again in my classroom – I feel at times that I almost lived there! Since I was a child, I had experienced irregularity. No amount of fruits, veggies, or grains could change me, and I just learned to live with it. That sensation increased as the MS progressed, but it was soon accompanied by another doozey – urgency! As I said, I thought it was an upset brought on by worry, but it wouldn’t go away. I’d be teaching, and suddenly I felt as though I would burst. I’d get a teacher to cover, and I’d make a beeline for the teachers’ lav. At that time, I could still move a lot quicker, and I always arrived ‘in time.’ That wouldn’t always be the case, though. Once more, I was on an evaluation trip not too far from home. The school had presented a beautiful opening ceremony; then they took everyone to a nice German restaurant for dinner. The foods were delicious, but ever so rich. As the evening began to wind down, I felt that feeling inside and I panicked. The room was full of people; how was I to escape? Fortunately, one of my team members came over, and I said we’d have to get to the hotel for our opening meeting. Without my asking, she gathered the coats and I could throw mine on and get out quickly. Once in my hotel room, I could take care of the matter. I escaped what could have been a totally humiliating experience.

Those events continued to happen, but fortunately always at home, and I could move quickly enough. Once more it occurred during a field day in my last year of teaching. Again I lucked out in that I could get home in mere minutes, remedy the problem, and get back to the field day. When I was a principal, it happened more and more – after a dinner out with some teachers (I literally had to dispose of my inner clothing, and wrap myself in paper towels,) on a drive home (it was a forty to fifty minute drive,) and once after everyone left for the day and I was alone. After that, I watched everything I ate, and I always escaped the embarrassment that could have ensued.

After I left the work world, I was able to once again time everything, and I was mostly at home. I had to let Hubby in on what was happening, and he often became my savior by helping me out. Now I keep track of when it might occur, and the worst of it seems to be gone – it’s about ten months between events now. I feel lucky that I’ve gotten away without being ‘caught,’ but I realize it could happen at any time. Two years ago, we left a summer party early because I felt things moving quickly, and I knew I wouldn’t make it home in time. I miss out on a lot just to avoid ‘losing it!’

I know that others have probably experienced similar situations, but I often feel so alone with it. I’m a private person in the real world, and I absolutely could never talk about this. However, here in my little virtual existence, I feel I can let it all out and be honest. So this will conclude my discussion, and I’ll go back to babbling about more appropriate topics. Thanks everyone for your support.

Peace,
Muff

from Judy of Peace Be With You


I admire people
whose courage makes them willing
to slay the dragon.

They don’t run and hide.
Jaw set, eyes on fire, they fight.
Best kind of ally.

I am quite grateful
that some of those warriors
are fighting MS.



This concludes the 75th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 18, 2010. 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 16, 2010.

Thank you.

Comments for this post.

Wednesday, November 3, 2010

Interview with Marc, Wheelchair Kamikaze (Part One)

Marc, you are known as "the Wheelchair Kamikaze." How would you describe the relationship you have with your wheelchair? Have you been able to dothings you might not otherwise be able to with the use of your chair?

Well, I'd say me and my wheelchair are very good friends. Like most people facing the prospect of getting a wheelchair, I was very wary of the whole proposition at first. I really resisted the whole idea for a while, but all the time my world was shrinking. I was able to walk less and less, but living in New York City, as long as you can get to a corner, you can always hail a cab. Unfortunately, my disease was progressing to the point where I couldn't even get to the corner. I had to undergo a long-running battle with my insurance company to get the wheelchair that I thought was right for me, because they had approved a wheelchair more suited for indoor and suburban use, whereas living in the city presents challenges best tackled by a more rugged machine. There are huge avenues to cross, the pavement is often in terrible shape, and numerous construction sites create some very haphazard pedestrian walkways. Also, I really wanted a chair that goes fast. I made the argument to the insurance company that this was because of the hazards of city living, but in reality I'm just a guy who always owned sports cars, and the thought of being stuck in a little putt putt chair was unacceptable. I finally got the insurance company to pay for a rugged chair with a high-speed package installed, so that I can go about 8.5 m/h, almost 3 times typical walking speed. The speed has actually turned out to be very handy, and I can get around the city much faster than most of my fellow New Yorkers, even if they hop on a bus.


Read this post in its entirety:

Wheelchair Kamikaze: Marc discuss Life in NYC, Progressive MS, Relationships, and CCSVI (Part One)

Tuesday, November 2, 2010