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.

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 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.


  1. Hey Lisa!
    It's been a long time, but I was stopping by to say hello. You and this blog helped me in so many ways when I was first diagnosed. Hope all is well with you.

    All my best,

  2. Another great Carnival, Lisa. Somehow I missed this post of Blindbeard's on her blog, but what she describes is a classic example of the Nerve Gate Theory of sensory perception, where one sensation is perceived before another. In her case, she discovered that pressure is perceived before pain of the MS Hug. I once discovered that cold (from a compress) precedes incessant itching.

    I wish I could find a complete list of the order of when senses are perceived. If anyone knows, please post it here.

  3. Brian!
    So good to hear from you. I'm so glad if I helped in some small way. Your emails of gratitude helped me keep going too. Things are going really good for me lately. I hope that you are doing well. Thanks so much for dropping a note. Really good to hear from you.

    Now you've given me a topic which needs to be researched. I'll have to put that on my long list of to-do's. I've tried the cold over itching before. It helps. :)

  4. Just a thought for the future 5 to 10 years from now
    There are earlier stage drugs in development which show great promise - 2 immune system proteins seem especially troublesome in ms-il-17 and il-23. agents blocking these look great in animal trials and there is a lot of hope around them. Spread the hope and check it's always little steps when your learning to walk...when you could walk.

  5. Acorda Therapeutics nor lead study investigators (all of them!) would cooperate with me – or offer their perspectives – on the merits of global self-scoring metrics or hard endpoint data, such as improvement in walking speed, in assessing the new oral Ampyra. An Acorda spokesman did comment that the company preferred NOT to work with me, citing past “conclusions contrary to the preferred image" for Ampyra. Consequently, I welcome hearing directly from MS patients and prescribers directly to assess “how beneficial” Ampyra truly is for you – the ones that matter. ~ David J Phillips

    Acorda VP Sabella told analysts on the third-quarter 2010 earnings call “approximately 75 percent of commercially-insured MS patients had no – or limited – prior authorizations (PAs).” Only an estimated five-percent of such patients are totally blocked from receiving drug reimbursement, said Sabella. Are PAs an issue for MS patients looking to start therapy?

    As of September 30, management said the rate of “first refill” was 67 percent. How many of you folks are still on Ampyra for more than 30 days?

    It is on the issue of “hard endpoints” where Acorda and I diverge sharply. In the longer of two extension studies, many responders have begun to demonstrate decreases in walking speed over time. (Remember, the drug doesn’t address the pathophysiology of the disease!)

    Acorda likes talking about impressive 35 percent improvements in walking assessment scores, such as the length of time it takes for patients to complete a 25-foot course. What management doesn’t like to bring up is that in regulatory meetings with the FDA, committee members expressed concerns about the sponsor’s primary endpoints and the magnitude of improvement in the actual decreases in walking times for Ampyra-treated patients: differences of only 0.5 second and 0.88 seconds in its two pivotal trials. How many of you are “feeling better” the longer you stay on Ampyra – and how significant (in seconds) is your increase in walking speed or leg strength?


  6. Ha ha,
    I spent the first 45 years of my life postponing all bathroom visist for as long a humanly possible -

    grade school it was too scary; my underthings were "all wrong,"

    and by junior & high school; too genuinely dangerous,

    then as an "adult," or anyway, a BARTENDER, why would I leave a bar full of tipping customers to PEE when my shift was only 12 hours?

    I always drank all water available, but it was a shock to learn that I was better off NOT retaining it for all eternity.

    Pee & Poo, I do much better when I take scheduled TRIPS to the head...

    thanks for your openness!