Carnival of MS Bloggers #118

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

MS in the Movies, Best and Worse Things to Do After Diagnosis

Movie Time!

by Thomas at BiPolar, MS, and as handsome as ever

You know, there are days when you think you're doing real well with these disorders. This morning I was up early, shared breakfast with my wife, sent her on her way, and then did some reading. Following a chapter of a Buffy the Vampire Slayer story (yes, I enjoy the classics), I did my stretches, exercises, and then hit the road for a mile walk, headphones and all. Back home, I grabbed the newspaper, plopped on the couch, opened the paper and immediately fell asleep for one hour. This set back all other planned activities. Yesterday MS/BP let me ride my bike to run errands, then work in the yard, and get a lot of reading done, including Chris Matthews' book on JFK. Thought I could get two days in a row. Silly MS boy. Now since I'm all messed up and foggy as a London night, I'll try this.

Let's go to the movies!

It's Tuesday as I write this and I usually take in a flick today at one of the local movie houses. It's also two dollar popcorn day, and if the person taking the money and giving you your ticket is "of a certain age", I can squeeze in as a senior. Once you hit 55, and have a pension to live on, the words "early bird special" start coming out of your mouth. So over this summer I've seen everything from Prometheus to Abraham Lincoln, Vampire Slayer. I'll leave reviews of those epics to others, but just a note to the Abe Lincoln producers - please remember to keep that mole on his face all the way through the film, and by the way, during his Presidency, he had two other kids aside from Willie. I know, I know it's all made up. Alas, that's where some kids get their history from.

Anyway, below is a list of movies (and TV show) that featured a character who was either diagnosed bipolar or with MS. No one would ever figure on someone who had both, right?

Bipolar disorder: Splendor in the Grass (1961), A Woman Under the Influence (1974), Mr. Jones (1993), Michael Clayton (2007), Observe and Report (2009), The Informant! (2009), Shine (1996), 3 (2012), Homeland (TV) (2012), Lust for Life (1956), Frances (1982), Cobb (1994), Call Me Anna (1990), A Fine Madness (1966), Bulworth (1998) (for the rap scene alone)

Multiple Sclerosis: Hillary and Jackie (1998), Duet for One (1986), The West Wing (TV) (1999)

Bipolar is winning the race for most characters, probably because if you need someone manic, you can get it, if you need someone depressed, eventually you'll get that. Now these lists are not complete certainly and are from various sources around the web. You can find most if not all at Netflix or Amazon. I have seen some of these films and I intend to see more, but here's the one I'd like to talk about:

Duet for One. This is a small film, and is really based on the life of Jacqueline du Pre', so I guess you can watch either of the MS films noted here and get the same idea (See, it's not that Hillary and not that Jackie - it's the du Pre' sisters, Hillary and Jackie). Anyway, Julie Andrews was nominated for a Golden Globe for her performance as a concert violinist who contracts MS, and the movie is about how the decisions of her life after diagnosis affect those around her. You also get to see Julie undress, have sex with Liam Neeson, and say the F word a lot, which to a mind that still sees Mary Poppins and Maria from Sound of Music is a little disconcerting, but Ms. Andrews is a fine actress, and is supported by such greats as Max Von Sydow and Alan Bates who I think was in every British movie during the 70s and 80s.

But here's what bothered me. The character Ms. Andrews plays, Stephanie, constantly refers to herself as "a cripple." Now this movie was made in 1986, and since we're looking at 25 years ago, there were limited treatments, if any, and so she deteriorated at a faster pace, but a cripple? Perhaps I'm looking at the film (and before that a successful stage play) from too far away, or perhaps its a British thing.

But take a look at it yourself....

The whole thing is on You Tube. 10 parts but easy to follow.



Do you think we could ask Martin Sheen if he'd like to be President again? I'd rather have the guy with the MS than what we've got now on either side. Heck, we did pretty well with the guy in wheelchair. Oooops, no politics. Sorry. I'll be viewing Hillary and Jackie this week and will add some comments later.

Of course, these diseases are always good ones to flare up just when the story needs a push.

I'd like to close with a bit of dialogue from the film, this being said by Stephanie to her doctor.

"Sitting there year after year listening to miserable people like me tell you how the world does destroy them. Have you ever once felt anything like the pain they feel? All the despair, all the fear? You make your living from their suffering and you don't understand a shred of it. Anyone of us is more qualified to speak than you because we have been there. We're still there."

AKA-If you ain't got it, you don't get it. Other films? or TV shows?

The Five Worst Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade 

Although I am a relatively smart person, I can admit to having done some pretty dumb things in my life. A lot of the dumbest things came after finding out I had MS. I thought if I listed the top five, it might save someone from repeating my blunders.

Mistake #1: Not 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 was followed by a 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.

Instead, I went back to work way too soon and focused on keeping my job instead of maintaining my health.

Despite worsening symptoms that were seriously compromising my mobility and function, I kept pursuing a high-stress career that I was both good at and enjoyed. I ignored the handwriting on the wall regarding my own future.

After two frantic years of working 12-hour days, being on call 24/7, determined to prove that MS would not impact my performance, my position was eliminated and I was out of work. Before finding a new job had never been a problem. But things were complicated now. I couldn’t “pass” any more. Now I needed assistive devices, a cane or a walker or more frequently, a wheelchair, to get around. Huge red flag for hiring managers, although, of course, there is almost no way to prove that.

Two years have passed. Realistically, I am unlikely to ever return to the work force. I am just too sick. I have finally applied for 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 cozy, 1930s seashore home. 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 I pulled up ratty old carpet, painted, plastered, fixed, planted, you name it. It is a charming place, full of sunshine and color, where guests settle in and are reluctant to leave because it is so comfy.

I used to be able to blow through the house in an hour, vacuuming, dusting, mopping. 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 monumental effort to get up the three small steps from the back door to the kitchen. 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 that the market is horrendous, I will be lucky to get any equity out of it at all.

Mistake #3: Not having a frank discussion with my children about my illness in the beginning.

I have four grown children. They are good people with good hearts and I know they love me. But they are really struggling with accepting the harsh reality of how sick I am. 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. By pretending I was fine, by acting as though there was nothing wrong, what I’ve done has caused even more pain.

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 wonderful sister have stood by me for decades through sorrow and joy. And through MS. They were there for me from that first hospitalization. Always, always, always offering help. “What can I do?” they would ask. And what have I replied? “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.

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 when they are repeatedly turned away.

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 shades drawn. Medication?!? Tuh, (I spit on the floor), I don’t need no stinkin’ medication.

That is how you spell D. E. N. I. A. L. With some stupidity and stubbornness thrown in. 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. My denial has cost me dearly.

The Five Best Things I Have Done Since Being Diagnosed with MS 

by Marie Cooper of MS Renegade

As I noted in last month’s post, the mistakes I made since being diagnosed with MS were all pretty big and dramatic. The best things I have done since diagnosis are mostly small and practical, banal even, but they helped all the same.

Best Thing #1: Writing my blogs 

Hands down, blogging is 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 or try to have anything published.

Then came blogging. I had been thinking about writing a blog for a while, but I was really apprehensive. I took my time, did a lot of preparation and then, nervously, took the leap.

Well, I have had the best time writing these blogs! My readers are utterly wonderful and many have become true friends. I have received feedback that is so touching, so kind and so encouraging it has been a real gift.

My point here is, do what you love. You deserve it. It’s time. When we have a chronic illness, it is easy to fall into a life that is limited. We don’t feel well and everything is an effort. But try and ask yourself, what is the passion that you have been too busy for? This is the chance to cultivate the things that are most meaningful to you.

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 ran persistently into the future, telling me all the things I had to do. It. Never. Stopped. For. One. Minute. Then came MS.

In the beginning, I ignored my symptoms. I DEFIED them. I kept working, cleaning, shopping, doing, doing, doing. And I paid the price with regular relapses, needing a course of IV steroids to get me functioning again. I had more and more residual deficits each time. It took forever, but I finally allowed myself to respect the fact that I needed to listen for cues and anticipate my needs before they got to a crisis point.

Best Thing # 3: My “overbed” table

Go ahead, laugh. It is, after my laptop, my most treasured possession in the world. After my diagnosis with MS, I was juggling my entire life 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.” I am a nurse and I have seen unspeakably disgusting things on bedside tables. I can cope with these things professionally. But I certainly didn’t want those memories lingering near my own bed.

So I resisted. And I spilled things and lost things and sat on things because my bed was a disorganized mess. In desperation, I priced what are called “overbed” tables. I was delighted to find they had a different name: laptop tables!! Well, these didn’t conjure up memories of basins or bedpans for me. What’s more, they were reasonably priced. So I bought one. And I love, love, love it.

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 iPod, my mobile phone, CDs, pens and notepads. It is like another limb.

Best Thing #4: Reach-y thingies

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 pitched to the floor.

It took years before it occurred to me, but with a lightning strike of brilliance (yes, that is sarcasm), I finally bought several reach-y thingies. I do believe that is the technical name for them. [Note: the technical name is reachers.]

I bought ones that fold in half for the kitchen and bedroom, and that have 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 spilling. 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. 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 resisted the MS label for a long, long time. 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 damaging when I wasn’t taking care of myself or accepting help 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 disregard it. By admitting I have it, I am free to take better care of myself.

That is the uniting theme here in my Five Best Things – do what is best for you. What is best to make your life simpler, happier, healthier. I am not a fan of the saying, “If life gives you lemons, make lemonade.” Life is hard enough at the best of times. My opinion is, if life gives you lemons then you have too many dang lemons. And I don’t even like lemonade. But we are stuck with this disease and taking good care of ourselves is the best way to cope. I suppose that could be considered a form of making lemonade out of lemons. Although if I have to make something, then what I’d really like is lemon vodka. :)


This concludes the 118th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on July 19, 2012. 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 17, 2012.

Thank you.

Comments for this post.

Carnival of MS Bloggers #87

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

cycles in life and hope

In the span of life

It's the middle that matters

By Mary K. Mennenga

Learning your capable of doing something doesn't mean you should

Time teaches us we aren't as smart as we thought

When we become willing to admit this, that's when growth begins

We no longer need to be told what someone else thinks

The answer to our question is

We begin to seek out the answers for ourselves

To the questions that the answers bring to mind

Creating even more answers that need questioning

As we begin to make decisions about what we believe the truth is

Who we are and what's important to us and why

We learn that each choice we make will change

What choices and options are available to us

It becomes a lifelong cycle of questions, answers

Learning and personal growth making decisions and choices

It's a kind of learning that you learn as you go

So don't judge yourself too harshly

This never-ending cycle helps you become

The person you know you want to be

It's a journey that no matter what you do

Still takes a lifetime to finish

Well coordinated
by Toots of Maybe MS Truth

Today (now yesterday) my masseuse commented that my knickers matched my walking stick. Let me explain.

• a) I have had regular massages since suffering a work related shoulder injury many years ago. I wrenched something. It hurt. A lot.
• b) Unusually for me, these particular knickers are patterned with red cherries.
• c) I own a variety of patterned walking sticks. This is one of two recent bargain buys from Timpsons. It is bizarre how excited I now get about buying new walking sticks. Who’d have thought someone my age would get so much pleasure from a pretty stick! Not a euphemism.

I often coordinate the colours of my clothing and, to a certain extent, accessories – earrings, bags, walking sticks. This probably makes me sound far more fashion conscious than I could ever pretend to be.

Loss of coordination was one of the first symptoms to affect me when I suffered the MS relapse that led to my diagnosis. I don’t remember what I was wearing when I went into hospital (in an ambulance) but I bet it wasn’t in any way coordinated. I do remember I couldn’t write properly with my left hand. I am left hand dominant. Left-handed to you and me.

I had also started dropping things. I was already using a stick due to footdrop, balance and coordination difficulties when walking - and when standing or bending down. Sitting seemed to be ok but that doesn’t take a huge amount of coordination.

None of this is unusual for someone with MS but when you don’t know you have MS and these difficulties are accompanied by visual disturbances, extreme tiredness (fatigue), strange numbness/tingling in limbs and crushing pain round your midriff then the loss of coordination is disturbing. It was the midriff pain that landed me in hospital, It moved up to my chest and the out of hours doctor told me I had to phone 999. Best thing I did. Once in hospital I had the raft of tests that led to my diagnosis.

On diagnosis, I was told by the hospital MS Specialist Nurse that the crushing midriff pain, which felt like a far-too-tight twisting belt, is known as the MS Hug. I think of a hug as a pleasant thing. This wasn’t, and still isn’t, at all pleasant.

One of the problems with all my symptoms is that they didn’t/don’t feel coordinated. To a lay person like me, it’s like having a whole jumble of stuff wrong. So yesterday it was good to be told that one part of me was coordinated. My knickers matched my walking stick. I was well coordinated. Very important, I feel, to look your best... in case you get run over by a bus.

Taken off of Tysabri

by Maryann of MS and ME

These are my two grandsons, Alex (8) and Albert (12). They came, along with their parents, for a visit in March. We had a wonderful time with them. Behind them in the picture is the Roanoke River. We were all walking on the Greenways, a very nice asphalt walkway that goes through Salem and Roanoke.

I had MRI scans of my brain, cervical spine, and thoracic spine taken with and without contrast. Following that, I had a visit with my MS specialist neurologist last week. He said there were no changes since my last MRI. However, in a blood test taken the first of March, I tested positive for the virus that causes PML in people who are on Tysabri. Dr. S told me to discontinue my T infusions for now, but to not have my port removed.

Because of my tiredness, sleepiness and fatigue, he is weaning me off of the Flexeril and Baclofen that I had been taking. If my muscle spasms come back and are too painful, I am to start taking the meds again.

He did a lumbar puncture, which was my second in 20 years. There was a problem gaining entry, and they ended up having me sitting on the exam table, with my arms extended over a walker, and my chin tucked into my chest. That opened the area up and the LP was done. I also had to go to the lab, carrying the fluid from my spine, and have blood drawn.

I will also have a sleep study done because I am overweight and I snore. Then, I will also begin Physical Therapy.

That's an awful lot of stuff. Dr. S seems to think I have another disease along with my MS. He mentioned Primary Progressive MS, and he also mentioned Parkinson's Disease. I hope I'm negative for both of those!

We're going to Margate, NJ to celebrate Passover with Arnie's family. Along the way, we are stopping in Philadelphia to visit a friend I met on Facebook. I am so looking forward to seeing Rita in person, along with her little dog Jake. Can't wait to see the family and be with them for the Seder. This will be a pleasant trip for all of us.

My Shoes. . .

by Jodi Bean

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable Shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the other one who wears these shoes.
There are many pairs in the world.
Some women are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have work the shoes so long that days will go by
before they think of how much they hurt.
No woman deserves to wear these shoes.
Yet, because of the shoes I am a stronger women.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has MS.

Author Unknown

I changed the last line of this poem to "who has MS." It was written for another use but rings so true for people living with MS. As a social worker and as a person I try not to be judgmental or to make assumptions about people. I often say to myself and/or co-workers "until I've walked a day in her shoes I'm not going to judge/assume." I think it is a good motto to live by.

I don't know what it is like to live someone else's life. Life is different for everyone. Everyone's journey is different. I walk in my shoes on my journey which has been shaped by MS. I can honestly say that it has greatly impacted everything I do and every decision I now make. But my journey is not a sad journey or an angry journey or even a depressing journey. Yes there are bad days and my future health is unknown. But there are also a lot of good days, great days, happy days, time with family, vacations, time with friends, dinners out, sunny days, good books, funny reality tv shows, laughs, drinks, memories, support, love and HOPE.

My journey is filled with hope. Hope that one day I won't walk my journey in shoes with MS. I hope that one day there will be a cure. I hope that I will continue to be strong and happy and motivated. I hope I will never give up the fight against MS.



This concludes the 87th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 19, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 17, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #84

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

Kindness of Strangers, Old Friends, and New Doctors

Mardi Gras and The Blessings of Strangers

by Rodney at CCSVI Locator

I love Mardi Gras.  I have gone to the parades for all of my life.  I have been blessed to ride in the parades.  The riders throw beads, cups, stuffed animals, doubloons and other trinkets to the crowd.  The entire event is a love affair of the city.

The parades go on for about 10 consecutive days.  Last year my wife went to see her mother in Alabama, and our daughter and I went to a neighborhood parade that got expanded to three consecutive parades because of rain on previous days.

I parked five blocks away.   Even though I had MS, five blocks was not that big of a challenge.  I had some stumbling moments in the past, but no major problems.

I was fooling myself.  I took the cane and failed to use it as we walked down the very poorly maintained streets of New Orleans.

We made it to the parade route and all was great. The people were nice.  They gave my daughter and me drinks and food because the hour-long event went to three hours.  I sat down on the curb and got along with everyone.  My daughter made fast friends and everyone had a great time.

We had caught a garbage bag of stuff at the parades.  Our daughter was so pleased with her catches she could fly.  I know this neighborhood.  I may not know the individuals, but I know where I am.

Realize that New Orleans was coasting on an incredible high.  The New Orleans Saints football team had just won the Super Bowl and the city was full of love.

We walked and I stumbled.  I got better set and walked on towards the car.  About another half block and I was down on the sidewalk.  I started to crawl towards a Dodge pickup truck.  I would crawl, regain energy and get to my car.

I could not have been prouder of our 10-year-old daughter.  She was a trooper and maintained calm in a horrific situation of her dad falling on the ground.

Then New Orleans came up big.  I was crawling towards the truck, and someone got someone else and suddenly this young lady, a nursing student, pulled up to take the two of us to our car.

Total strangers stepped up and brought us back to the car.

I am eternally thankful to those helped me in a moment of extreme need.

Shortly, I filed for disability and began looking for new solutions beyond Tysabri for MS.

I was on Tysabri at the time, and my condition had deteriorated to a new low.

Within weeks, I began to work towards getting CCSVI.

So through tragedy, good turns of life can be presented.

The first good turn was when a place I loved gave me more love than I will ever know.

I have through my life tried to be the giver of love to those in need, and just the memory makes me cry.

My little girl and I drove to a restaurant, had dinner and drove home.

The next challenge is to see another parade.  I will go again.  Mardi Gras is something I want to experience again.  This year I will probably not go to a parade.  But next year I want to attend parades with the kids.

My life has been filled with goals.  Marriage.  Children.  Home.

My next goal of going to a parade is somewhat selfish, but I want to just stand before a parade and feel the love.

And I will do it with the help of my family.

Taking MS To A Class Reunion...

by Tina of MS Keeps Life Interesting

Ah yes...class reunion time!

Preparation meant:

* Try on approximately 16 different outfits to see which one makes me look less spherical.
* Find which jeans elongate my 5'1" stature.
* Find which shoes have the largest heel I can walk in without falling, again, to give the illusion that I've not lost an abnormal amount of height since graduation.
* Accessorize in a manner that says, "I still got it". Whatever "it" is. Or was.

I was a What Not To Wear episode. In summary, I felt like I shouldn't wear any of it. But the reality is...I've known these folks since about 1977. I'm not fooling anyone with a crafty pair of jeans or dazzling top. I'm not 100lbs. I'm not 5'7". Let the secret be out.

So there I was, entering the establishment and immediately checking in at the...ladies room. When I'm anxious, my bladder shrinks to the size of a pea. No pun intended. Upon exit, I was scanning the crowd for anyone who looked like someone I used to know...but in a "20 years later" fashion. And wondering if, when I approached them with a warm hug, my head/neck tremors would act up and they'd look at me sideways. Or that I'd lose my balance a bit, as I do when I hug someone...which results in a slightly longer-than-appropriate hug. That can be very awkward for both parties. Thankfully, before I had much more time to consider the possible scenarios, I spotted one classmate...and another...and look there's another! Yaaaaay! My friends! Oh how I'd missed them! They seemed to know me upon first glance and vice versa. Whew. That was easy...

Side note: I love that most of the guys are bald. My husband didn't feel so out of place. Seriously though, how could they not be with the abundance of hair gel and mousse they wore circa 1988-1991? If they only knew the price of having that impressive, spikey hair...oh who are we kidding, ladies. They wouldn't have changed a thing!

So when you're used to drinking water and you decide to enjoy 2 Cokes in succession, the bladder isn't pleased. It identifies the black, caustic liquid as a foreign substance and wishes to rid itself of the offender as quickly as possible. After 4 bathroom trips in the first hour, I switched to water...which resulted in another 3 trips, though better apportioned.

Finding my way to the restroom, maneuvering through the large crowd of folks...many of them swaying...became quite an obstacle. I had to navigate a series of steps, as well. They were narrow, which added an extra little spice to the venture. All I could envision was taking a spill similar to the one I had about 6 years ago at a child's birthday party...where I fell down narrow steps, hit the back of my head, and knocked myself unconscious. It ain't a party 'til someone wants to call an ambulance for your mommy, right kids! RIGHT!

But I made it...all 7 times. Without falling, without so much as tripping. Sure, I bumped into a few folks, but they didn't seem to mind...probably didn't even notice. And then it happened out of nowhere. The lights went dim, the colored disco ball spun, and the music began. Oh no. I never, ever used to turn down an opportunity to dance!

I immediately took a step toward the dance floor, but stopped myself. I decided it was a "No" with a capital N. I simply couldn't dance. I'd get overheated, my eye would blank out, my legs would shake, and I'd stagger out. But wait. These are the people I've known since 1977. And these are my favorite songs. MS...may I have this dance? Just this once?

It Takes Two! Apache - Jump On It...complete with applicable "cowboy with lasso" dance! Lady Gaga for good measure! Perfect! As predicted, I lost the majority of my vision in the left eye, my legs began to shake, and I knew it was time to take my "dance partner" home to recuperate. But I'll tell you, my head/neck tremors coincided perfectly with "Bad Romance". It's not the easiest song to dance to, so I just sort of moved my body a bit and let the tremors do the rest. My girlfriends were clapping with approval, so I must've been doing something right. Come to think of it, maybe that truly is the correct way to dance to a Gaga song? Hey thanks, ms!

What was I worried about, you know? I was able to be there and have a blast! I got to dance, which is something I've always loved to do and used to be fairly good at (though not anymore, but it's still fun)! And I was able to reconnect with some wonderful folks that I've missed dearly over the years. I think that's worth some leg weakness, eye blurriness, and a little peeing for good measure. That's what panty liners are for! Did I just say that out loud? Wow. I really AM just like my grandmother...

But behind every wobbly woman is a strong man to shove her into the truck. Many thanks to my dear husband for being that strong man. In sickness and in health...in wobblies and in strength...in temporary blindness and in clarity...he loves me through all seasons. And I love him right back :-)))

MS Specialist

by Maryann of MS and ME

My neurologist here in Salem referred me to an MS specialist in Charlottesville. As I have never been to one, I was intrigued. We drove the 2.5 hour drive to C and I checked in. After getting weighed (ouch) and BP taken, we were shown to an exam room. I wanted Arnie to be there to help me with questions and to help remember what the doctor said. Of course, Monty was with me also.

After a few minutes, Dr. Scagnatti entered the room and shook our hands. I like him a lot. He was with us for 50 minutes. First he did a complete MS history, then a thorough neuro exam. He then asked if I would be able to walk in the hallway without Monty and without my rollator. I told him I could do that as long as I could walk close enough to the wall to catch my balance.

I was asked to walk normally--for me--while he watched. He then had me stand and told me that he was going to give me a push (or a pull), I can't remember which. He said try not to take more than two steps backwards. He did it twice, and I took six steps back. I forgot to ask what that was for.

He then sat and talked to us. He asked if I agreed to be in the Touch program, which is a clinical trial for people taking Tysabri. The check for the virus that causes PML, the brain infection for which there is no cure. I signed the papers. He then said that he wants me to have an MRI scan of the brain, cervical spine, and thoracic spine to check for new lesions. That is scheduled April 1, then I have an appointment to see him the second week of April. He also said that during that visit, I will be assessed by the physical therapy group there.

Since Arnie goes to Charlottesville to his oncologist, we will be making the trip now more than once a month. That's okay, it's just 2.25 hours from home.

I'm glad Dr. Scagnelli wants to see me back again at regular intervals. I expected for him to say to come back in six months or so. I really really like him, and so does Arnie. That gives me peace.

Typical MS Symptoms – My Early Signs

by Tanya Asbreuk

Before I was diagnosed with MS, I had no idea what was going on with my body. In my left eye, my colour vision was fading and I was light sensitive to the point of constant nausea. I actually went out and bought an eyepatch – and then drew a skull and crossbones on it with a white-out pen. Aaarrr Matie! As long as my eyes were open I had a headache so bad it bought tears to my eyes, and I felt this bizarre pressure, like there was an ice pick tearing into the back of my eye from inside my head. I found out later this is called “Optic Neuritis.” On top of that, I had tremors in both arms and hands – worst in my left. This was happening as I was finishing up my manual drafting class at college, which is all about drawing very neat and specific lines with a pencil and ruler. I couldn’t even keep the ruler still with my left hand. I also had a strange sort of spasticity in my right leg – I’d be walking along, then suddenly my leg would kick out randomly, and I was never sure if it was going to end up where I expected it to be. This is called “Ataxia. ” I was using public transit and walking a lot at the time (and still do). I also started slurring my words slightly, and had trouble concentrating on tasks that were usually very simple for me – called “Cognitive Impairment” or "Cognitive Dysfunction."

It was like all these things that I had taken for granted about my body were tired of being ignored, and were all having temper tantrums at once. It was at that point that I started looking at my body as separate from me, and I spent a lot of time asking it what the **** it was doing. My Neurologist told me I was actually having three separate attacks that just happened to overlap. It didn’t make me feel any better about it. Then came the corticosteroids… and I lost some serious time that week. The funny thing about taking 1200mg of steroids in 3 days isn’t what happens during those days – it’s what happens afterwards, as your body is flushing them out. My class apparently went on a field trip the week after my steroid binge, and I went with them. I participated, I asked questions (maybe not as intelligently as normal) and… I have no memory of that field trip. I thought I had dreamed it, and I had to ask my Instructor if I had actually been on a roof that day. I’m just glad there were people around to keep an eye on me! My nurses have since told me that is not a typical response to the steroid, even at that dosage. I’m special, I guess. I sure as heck didn’t imagine it.

I always wondered if there had been warning signs in my past – something that I didn’t know I was supposed to take seriously. After my diagnosis I started researching everything I could think of – early onset symptoms of multiple sclerosis, MS diagnosis, MS causes, disease progression, MS symptoms in women… and came out with a lot more questions than answers. I found out that MS occurs about twice as often in women than men, tends to hit my age group more than others (25 to 45 years,) tends to occur more often in Caucasians then other groups, tends to happen more often to people who live in temperate climates, in developed first-world nations… in other words I fit the profile, but no one seemed to know anything for sure. There is no proven genetic link, but it tends to happen about 20% more often in families having a history of MS. Mine doesn’t.


This concludes the 84th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on April 7, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, April 5, 2011.

Thank you.

Comments for this post.

Carnival of MS Bloggers #47

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

Poetry, Positivity, and Battles

Haiku - Caretaker Exchange
by Judy of Peace Be With You

I have MS but
My caretaker broke his hand.
I am caretaker.

Marriage vows promised
In sickness, in health, rich, poor
Partnership defined.

I am nurse and cook
Dizzy, foot dragging, stumbling
A delicate act.

Staying Positive is Hard! 
by Maryann of azoyizes and MS

I'm finding it hard to stay positive. Okay, I started Tysabri and I've only had one infusion. I did notice that I had energy, and I still have it, where I didn't have any at all. That's very positive.

However, my neuro increased my Klonopin but I'm still having tremors. He didn't feel that the Tysabri would help the tremors. Sometimes they're mild, but other times my entire body is shaking. It's hard to walk, type, feed myself, write; any type of coordinated activity is hard and sometimes impossible. Add to that, my little finger and ring finger on my left hand are completely numb and have been for about four months now. It's amazing how much harder it is to type with those numb fingers. I know, poor me!!

The muscle spasms in my right leg are worse. My neuro said that he wants to wait and see if the Tysabri will help in that aspect. I'm doing exercises, but sometimes in the middle of the night it gets so bad that I have to get up and walk around until it goes away. Sleeping on my left side has become impossible, because that immediately brings on spasms.

I also told my neuro that I'm worried about my cognition. I'm having a very difficult time remembering things, and these are things I've just heard or said. I'm having a hard time naming items. That got me worried about Alzheimer's, although it doesn't run in my family. That, too, my neuro wants to wait and see if the TY will improvie my memory before he starts running any kind of tests.

On the positive side, we're going to Newport News, VA for two days. We are going to spend one entire day at the Mariner's Museum. This will be one of my highlights as I love sailing ships of any kind, especially the ones from the 1600's. We will be visiting a few other museums in the area...and there is a Trader Joe's in Newport News! I love Trader Joe's, but there isn't one anywhere near where we live. When we lived in Tucson, we went there at least once a month.

After Newport News, we will drive on the bridge over the Chesapeake Bay, stopping at pull-out places to enjoy the bay and the ocean. Then, it's on to my BIL's for some family time.

The day after we return from this trip, I will be getting my second Tysabri infusion.

I'm trying to stay positive, but I find it's much easier to become negative. Maybe it takes too much energy to stay positive?

Haiku - We All Fight Battles 
by Judy of Peace Be With You

No one wants to hear
What is wrong with me today.
We all fight battles.

Mine might seem special.
They are only so to me.
Forgive my weakness.

It’s just that some times,
MS fear seems to trump joy.
My resolve falters.

How I Fight MS 
by Lisa of Brass and Ivory

Today's the big launch of a top secret project which a few other bloggers and myself have been working on for the past couple of months.

How I Fight MS
Five people. One goal:
to live victoriously with MS

I like the concept of living victoriously with MS, because that is what we each strive to do I think. MS is not something we conquer but something with which we can live a positive life.

The other bloggers involved in this project include:
Jen of MS Strength
Julie of Maybe I'm Just Lazy
Kimberly of My Journey with MS
Bill of Plates and Palates

Please tell me what you think. Thanks.


This concludes the 47th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on November 5, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, November 3, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #30

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

Bizarre Symptoms, Mechanics, and Love

Stoopid MS Symptoms 
by Blindbeard

I have such a strange hodge-podge of different symptoms from my MS that I feel I need to share them. I know we all have weird things that are hard to explain or not "major" enough to contact our neurologists about, yet they are annoying just the same. There are the common things that most of us can relate to, then there are the things that seem like strange quirks. I'm having some strange quirks right now, so I want to share them in case someone else out there is having some of the same problems.

I have random itchy spots. I have itchy spots on both upper arms, a spot on my upper right chest, a few on my sides and on my mid thighs. They drive me crazy and make me itch and itch until the skin is torn up. I clipped off my nails so I could minimize the damage to my skin, but all I want to do is scratch myself bloody.

My right ear is twitchy and itchy, especially right behind it. I have to rub it every few minutes to make it calm down. I get these shocks around it and up into my hair line -- a twang and vibration that is hard to explain, yet really annoying. My little sister and I were shopping yesterday and I played with my right ear almost non-stop. Made me feel like I had a dirty ear that needed a finger in it at all times. And if I wear a hat it is worse. It intensifies the yucky feeling behind that ear and makes me dig up my hair until it looks like a tornado took off on the right side of my head.

I have facial tics that make me contort my face and make stupid faces. I know I've mentioned this before, but I find it really irritating and embarrassing. My forehead wrinkles than straightens out in quick succession, and around my nose is twitchy and likes to pinch in making me grimace (not to be confused with the guy who likes hamburgers). So I wander around in public grimacing and with my forehead working overtime -- not exactly the most attractive look.

I have trigeminal neuralgia that comes and goes. I will be good for most of the day and when I start getting tired my face starts to hurt. It is along the right side of my face into my jaw and teeth. When it is flaring up I don't want to move my face at all. I avoid talking, eating (too bad it isn't in full flare-up, I lost almost 10lbs the last time it was at full force) and anything that might touch my face, ie no makeup. Not sure if this is related to my TN or just MS in general, but I have decreased taste on the right side of my tongue. Does anyone else have that too? I wonder if it is more common than it seems -- I'm not sure I've ever read about decreased taste before. I might have and just forgot about it; my memory is not so hot some days.

I have a hard time getting my body into the correct positions in chairs. It seems like I can't remember how I am supposed to sit anymore. I shift and shift but can't find a comfortable position. I can't remember how I used to sit and it bothers me that in chairs I look like I have a poker up my wazoo. Sometimes in bed I will toss and toss trying to find the old way I used to sleep but can't find it. Somewhere along the line I lost the ability to figure out how my body used to be in repose and I'm not sure I'll ever find it again. I know that is not a major thing, but it is majorly irritating.

I could probably think of more things, but Princess had her cousin spend the night last night and they are wild and hyper this morning; distracting me with constant chatter and questions. This probably goes without saying but I'll say it anyway: I would love to hear about any strange symptoms that you have. After all misery does love company and I can't exactly send these wild girls to your house, which you should be very glad of -- they ate all the good food in the house.

Positively Shocking 
by Shauna

I have seen a few picture galleries of close ups of electronic equipment and thought it would be neat to try some myself. They look like mini industrial cities or industrial parks. Of course I swiped, with permission, a dead motherboard from someone's laptop at work. Cool, eh?


I find the mechanical components quite fascinating, more so than the electronic parts for some reason. Perhaps because I seem to have a love/hate relationship with electricity and negative experiences with static (pun intended). Perhaps because I can never seem to remember Ohm's Law. Or perhaps because it's just one of those things I can't seem to wrap my mind around. Like time travel.

When I was first learning to drive, I was very frustrated because I just didn't "get" how cars work. And why did we only use one foot for two pedals instead of both feet?

Same thing with computers. Punch cards? Just one of those things out of place and I was destroyed for another 7 hours.

So anything more complex than a simple machine seems to be beyond my grasp. Give me a wheel, a pulley, an incline or a lever any day. They were good enough for Leonardo da Vinci. He came up with flying machines and submarines without knowledge of electricity or electronics.

Thank God that electrical things are of interest to other people and that wonderful things can come of that interest. Like lights in the night time. Radio. The internet.

Of course, electricity powers our bodies, though to a lesser degree. It is no less important. Without electricity in our bodies, we'd have no thoughts, heartbeats, or life as we know and enjoy it. For those of us with MS, we need stronger and more resistant insulation to cover the nerves that conduct that electricity.

Power companies have to spend money to maintain power lines, poles, transformers and the billions of other parts that keep us in the light. As MSers, we have to try to maintain our infrastructure as well, through diet, exercise, and mental stimulation. Some of us take medications that, like the power company linesmen, try to prevent power outages and maintain the system.

My dad is a retired electrical engineer. He understands all that electrical stuff that I don't. When I was five he took us for a drive to the construction site of a transformer to show us what he did for work. It wasn't until I was 16 or 17 that I finally understood what he did. I've been to a few of the other project sites that he worked on and while I found the experiences interesting, to be honest it was the mechanics of everything that I found most fascinating. Hydro-electric site? Never mind the electricity the water would generate, I wondered how the water tanks got full, how the dams opened and closed. Looking at the electrical plans for different buildings I wondered more about the blue ink used to print the plans or the different symbols on the paper. Sorry, Dad. I am amazed that human beings have figured out how to harness various sources and turn them into electricity; I just have a mental block when it comes to understanding how it works. I just know and trust that it does.

I also know and trust that there are people who understand the mechanics and electronics of the brain. They are the people we MSers are counting on to fix our power bumps.

Grandpa's Advice: Don't Be a Key Turner 
 by Mary Ann

Today would have been my grandfather's birthday. And though he's been dead a number of years, I think about him everyday - or at least every time I drive a car or open a locked door.

He was always free with advice and he often reminded his grandchildren to "not be a key turner."

My grandfather lived on the same street for most of the years I was growing up. He did his best to make sure I wasn't a key turner.

A key turner is a person who knows how to jump in the car, turn the key and go. A key turner does not know what to do when the oil light flashes, how to fill a gas tank, change a tire or what transmission fluid smells like. A key turner would never look at the drippings in the driveway and conclude something might be leaking.

You can bet I knew a lot about what was under the hood of my car when I first began driving. I knew that turning a key was just a tiny part of the process of making a car go from one place to another. I knew that knowledge and maintenance contributes to successful driving.

That key-turning business applies to more then cars, of course.

It applies to all things mechanical. I knew how to oil my sewing machine and keep my bike running. He made sure I could do minor repairs and maintenance on the washer, dryer, dishwasher, stove and lawnmower

The key-turner philosophy also applies to a person individually. It is up to you to know as much about you as possible and become your best advocate.

Just like your driving habits may mean your car never gets the miles per hour promised on a sticker label , your multiple sclerosis may differ from your neigbhor's MS. You may never need a wheelchair, you might need one a year after you are diagnosed. You may be able to keep working when someone else can't. You might only read, not experience, the Lhermitte's Sign's flash of electricity along your back..

Remembering that "your mileage may vary" helps me speak up when a doctor tries to prescribe a drug I know won't chase an infection away even if "it works for everyone else."

Being everybody else never was a goal in my family.

Is He Going to Leave You?
by Screaming Richie

When it was diagnosed that Herrad had MS and as it became obvious it was going to be really shitty people started asking Herrad about me. “Is he going to leave you?”

Funny till that point it had not occurred to me that I could. I could not see why I should want to. Herrad and I are a partnership. MS was happening to us. At first I was a bit shocked. How dare people even think I would shit on the love of my life just because things get rough? I would expect Herrad to care for me in similar circumstances. My Dad didn’t get on his bike when my Mum got cancer. He nursed her through the painful last days of her life. He and I may not have always got on but that is something I love him for- he loved my Mum.

I started to read blogs and chat rooms about MS and then found the reason for the questions: lots of men run when it starts getting nasty.

I was a failed comedian with no job, house or visible means of support when we got together. I guess I didn’t fall into the “most eligible” category. Many of Herrad’s friends are middle class. Not every one thought Herrad was very wise to get involved with me. They have known men from their background who bottle it. Cut and run in the cruelest most selfish manner. “Good men”- lawyers, business men and the like. So OK it would not be too strange for a scruffy geezer like me to sneak off- I screwed most things up- why should this be different?

So I decided it was amusing when Herrad’s aunty Sigrid called from Canada every month and asked if I was leaving. She wanted to be re-assured because she had talked to people with experience of this disease and many of them were dumped by their partners.

I am going nowhere without my Herrad. Sigrid now thinks I am quite a guy. She sends me her love now and asks what I am cooking for dinner. If anyone else thinks I am not good enough for Herrad they can stick their opinion where the sun don’t shine. The rank is but the Guineas stamp, the mans the gold for all that.

It is not easy dealing with the hard stuff but I would not to hide. I chose right and I salute all you men and women who have made the same choice as me. Let love rule.

Let Love Rule!!! What a great philosophy.


This concludes the 30th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on March 12, 2009. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Monday, March 10, 2009.

Thank you.

Comments for this post.

Carnival of MS Bloggers #20 - The Invincibility Edition

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

"Strength and Invincibility"

The grass may be greener over there, but I'm more black and blue 
by Jeri of Fingolimod and Me

It was Thursday and Thursday is the day my sister and I meet over at Mom's and have dinner with Mom, my eldest son and his wife, and my granddaughter, and my 10 year old who comes with me.

We were going to go straight there after getting back to town at 6:30 but SOMEbody had to use the bathroom and I decided to check my email. (I am seriously addicted to the internet).

We both get done with our respective tasks and we head out the door, me first. I yell over my shoulder "Make sure it's locked!" and he did.

I looked down at my hand. Uh oh. The keys are by the computer.

This wouldn't have been a big deal had I not relentlessly hounded John into finishing the privacy fence. The only way in was in the back yard and it was a fortress protected by a 6 foot fence with a gate that has 2 (locked) locks.

I look around giving the front yard my best MacGyver I Spy once over sweep in search of how to get over the fence. Aha! There's an A-frame from John's work van haphazardly leaning against the fence, as if inviting someone to climb up and over.

My son climbs up and looks over the other side.

"I dunno, Ma. I think I might get hurt," he says as he comes back down.

"Oh for cryin' out loud" I say impatiently. "Here, let me have that thing." I take the A-frame from him and he points out that our old pool ladder is leaning up against the inside of the fence about 12 feet farther down.

I take the A-frame over to where I can see the ladder between the fence slats. On this side, however, is some construction related material from John's work. Carpet padding, specifically.

I plant the A-frame straddling the roll of padding, sure that it will work just fine even if it is a little wobbly.

Did I mention that we live on an *arterial highway* going through our little town? And this was right around rush hour? Maximum audience.

As I am climbing up, I am thinking to myself "heh. You'd have never caught me trying this last year! I've become darn near invincible! Good thing I wore sneaks instead of flip flops."

And it was right about then, as I had one foot on the top rung and the other poised, mid-air to swing over the top of the fence, that I realized the A-frame was moving and it wasn't a side to side wobble. It was falling away straight out in back of me.

As I fell down onto the top of the fence which hit me right square in the gut, I remember thinking "glad we got that square topped fencing and not that real pointy stuff!" I balanced there for a couple seconds and then began to slide. The fence top caught under my shirt and the rough, unpainted wood proceeded to peel me like a potato as gravity pulled me down.

"YEEEEEOOOOOOOWWWWWWW!!!" was all I could manage to get out as I slid uncontrollably.

Then I realized, to my horror, the fence had scraped right under my shirt and managed to snag under my bra and I was hanging there, in front of the rush hour traffic with my shirt and bra over my head and my feet still off the ground.

Oh. My. God.

So many thoughts racing through my head as my hands worked madly to try and lift my entire body weight off the fence by my snagged shirt and bra.

"I hope my neighbor isn't watching!"
"I hope my son isn't watching...and scarred for life!"
"Man I don't want to find this on youtube!"
"I hope my brand new bra isn't all womped out of shape now! I paid good money for that!"
"That breeze feels kinda nice!"

It was probably only seconds before I was down off the fence. Then I was so busy surveying the carnage that I forgot I had an audience and when I remembered I was frantically trying to cover back up.

So how did we ever get the keys and go to Mom's that night, you ask?

My son, who had fortunately been spared from witnessing the whole tragic act, was around the corner wandering and goofing off, oblivious to it all.

When he saw me crying over my hurt dignity he asked what was wrong and I told him the fence had just beat me up.

He puffed out his chest and strutted over to the fence proclaiming "I'm not letting MY mom get hurt again! I'm going over the fence!" He proceeded to climb with a purpose and was up and over the fence without so much as a splinter to show for it.

He was in the back and out the front with keys in hand before my stomach and chest had even done welting up and bleeding and turning black and blue.

So, there could be one more side effect of Fingolimod that I hadn't considered.

The bottle should say "Caution: May cause feelings of grandeur and invincibility that could cause you to go temporarily insane and make a 47 year old do something that only 10 year olds should even attempt."

or

"Caution, always tuck in your shirt while taking this drug. May get hooked on fence and hang naked in front of traffic. Be sure to stay away from all fences before you know how you will react to this medication."

or

"Stop taking this medication and consult your physician immediately if you find yourself hanging by your shirt from your fence during rush hour with your boobs exposed for all to see. This could be a serious reaction and may need medical attention, especially if scrapes, swelling and bruising develop."

If I have anything to say about what the warning labels will be, that should about cover it.

New symptom. New opportunity

by Michael of Perspective is Everything

Living with a disease like multiple sclerosis, or many others for that matter, can be very unpredictable. One day you feel strong, the next day you don’t. One day you are asymptomatic. The next day you have a new symptom that won’t go away. Diseases are just like life. Every event, every instance falls into one of three categories:

• The things we control
• The things we influence
• The things over which we have no control

I choose to exercise as much influence and control over my disease as I possibly can. Let me explain what I mean by that………

A few months ago, my right hip started to give out. Typically, when this happened I fell down….and I don’t like falling down! I went to see the chiropractor to get an adjustment. I went to the orthopedist and got an x-ray and an MRI. I went to see my neurologist and my physical therapist, too. Since nothing showed up on the x-ray or MRI, the consensus was that the weakness was caused by a weakening of the hip muscles…..caused by MS.

So here is what I did about it: I started exercising my right side. I exercised it at least four days a week. In time, I started exercising my left side too. Now, I exercise five to six times a week. Do you know what happened? My hip got stronger and stopped giving out and I stopped falling down.

About two months later, I started having lower back pains. I saw the chiropractor and the acupuncturist and that helped for awhile. But then, a few weeks later, the pain was back with a vengeance. It was so bad that I could not stand up or walk. I could barely move. At home, I normally use a walker to get around, but for a few days, I used a wheelchair in the house. The chiropractor came to my home. So did the acupuncturist. I was able to move, but only a little. I saw my neurologist and my physical therapist. Again, the consensus was the same: the disease was progressing.

The physical therapist explained it best: my quadriceps (the muscles of the thighs) had become so weak that the way I walked was putting a great amount of stress on my lower back, which wasn’t that strong either. “THAT’S GREAT NEWS” I said. “That’s something I can do something about.”

So I did something about it. I added exercises to my workout to strengthen my ‘quads’, lower back and core. Guess what is happening? I am getting stronger. These new symptoms may be the best thing that has happened to me in these past few years because they have put me in control of how I manage this disease. I am getting stronger, more disciplined and more determined to not allow this disease to overtake me, at least not yet. In fact, the physical therapist calls the exercises we do today “pre-gait exercises.” Pre-gait means “before walking.” Am I going to improve my walking? You bet. Will I be able to walk without a walker? We will see. What I will do is the best that I can.

We may not always have the ability to do something about what is happening with our bodies and our diseases. We can be defeated or energized. We can do all we can to combat what is happening or we can do nothing at all. We can focus on all the abilities that we have lost or focus on all the abilities that we still have. One thing is for sure, we always have a choice in how we respond.

New symptom? Bring it on. Teach me how to respond to it, manage it, beat it and be stronger. It is not easy. But it is my disease, my condition and it is my job to do as much as I can about it for as long as I can……which I plan on doing for a very long time.

Participate. Make a difference. Live a life that matters.

This concludes the 20th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on October 9, 2008. 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, October 7, 2008.

Thank you.

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Carnival of MS Bloggers #18 - Illusion Edition

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

"Loved Ones, Nuances, and Illusions"

Tricia of Middle Age Mania shares what is like to be
"Married to the MonSter..."

When I met my husband in December of 1997 he was already diagnosed with MS - had been on Avonex for 7 months and had recovered from his first diagnosed MS attack which was a doozy that hospitalized him for about a week. He was handsome, had a runners body still, muscular thighs and six pack abs. I was intimidated by how "in shape" he seemed.

I knew about MS - a close friend of the family had a severe fast progressing case and she went from being fine to being in a wheelchair and then finally to being unable to breathe on her own within a decade. It was pretty scary stuff. I also knew a friend's mom who sometimes walked with a limp when over tired but was fine most of the time. This was the extent of my knowledge about MS when I met him.

There were those who warned me about getting involved with someone with MS. My family was concerned. Friends worried that I was setting myself up for heartbreak and maybe I was but I fell in love and I took the risk.

My husband has R/R (relapsing remitting) MS - he has had a lot of relapses in the last decade but many times his symptoms would reverse themselves after a course of steroids. So the day he woke up unable to control his left leg at all and had to use a walker just to get around? Well 3 weeks later he was walking like nothing ever happened. For us MS was a day to day reality in his energy level but the real serious stuff was usually a passing inconvenience.

The MS was sometimes at the forefront and a very real reason why he could not do something or go somewhere, but many times it was an excuse too. I don't want to go I have a headache. No way to prove or disprove that, I take him at his word. Sometimes he would go out in crazy heat to do things he wanted to do knowing it would drain him and other times he'd beg off due to heat when it really wasn't hot because he just doesn't want to. I find that MS makes a nice tidy excuse to get out of things and yet I never want to accuse him of that because what if this time I'm wrong?

I have never known my marriage without MS as I said above but I did know it before MS was there in our faces daily changing everything. I miss the times when the MS was something that boiled up occasionally and then went back to a slow simmer. About 2 years ago this labor day he had the start of an exacerbation - he had the steroids to halt it but this time they didn't work. He had been on Betaserone for nearly 4 years at this point but it no longer seemed to be helping. He was not seeing a specialist and his general neurologist was way out of his element here. But he didn't admit defeat and send hubby to a specialist, he kept puttering around talking about new possible therapies but not doing anything about it. Finally after almost a year of indecision and inaction on his neurologists part my husband was fed up and asked his primary care physician for a referral back to a specialist. This doctor immediately started the process to get him on Tysabri and took him off Betaserone. He sent him to a physiotherapist to try and regain some of the lost function but it seems that it's gone for good.

My handsome husband with the runner's build has lost about 25lbs of muscle over the last decade. His thighs are thin and much weaker, his abs are no longer rippling. He has a drop foot on the left, no balance at all, and a seriously unbalanced and uneven gait. He can only walk a few minutes at a time before he needs to rest and he staggers as he goes. I admire his resolve to not give up and sit down in a chair and just let it go. I also wonder at times WHY he fights so hard - use a chair sometimes it is just to save your strength. But he is a stubborn Italian man and give up is not in his vocabulary.

He has been on Tysabri for 8 months now. His doctor says he is showing improvement in involuntary reactions. I wish he would show improvements in balance and walking ability. He doesn't feel like he's getting better. I do think his memory loss is better. For awhile he couldn't remember from day to day things that happened or people said. And he wouldn't admit it was him instead accusing the other person of not having told him. This rarely happens these days - if that is the Tysabri I do thank it for that much at least.

I feel like an outsider sometimes. I know more about the disease and treatment than he does because I take the time to educate myself. But no matter how much I know the one thing I can never know is what it feels like, or how it makes him feel. I know how it makes me feel - scared, helpless, alone - and I don't have the disease.

I love my husband and I HATE what this disease has taken from him and by proxy from me. He is still R/R and there is still a chance he could turn around and start getting better but I fear that the best we can hope from the Tysabri is to stop the disease from taking any more. Because it has already taken so much it just doesn't seem like enough. I worry that he will cross over and become secondary progressive, if this happens there is no approved treatment and the insurance would no longer pay for Tysabri. At that point it becomes a wait and see game as in "wait until he dies" basically.

For the overwhelming majority of people with MS it is not a life threatening disease. I worry all the time that the man I married is not in the majority. I keep that worry to myself.

Amy of MS Life of Learning shares an internal observation
in "Silent Clammor"

Today is Wednesday, August 13th. As per usual I commuted in to NYC via the train across the street from my house. Every weekday that I'm feeling well plays out roughly the same way. I walk across the street with stick at my side and my far too heavy backpack keeping me grounded. Exchange pleasantries with the co-commuters while we wait. Depending on the train I find my place- today it is a long car behind the engine, 2nd seat on the left. Prop stick against the wall, assume commuter position.

From the outside looking in, that position is a static one, assumed by the quiet masses. For me it is where the action starts. Depending on that day's distraction -be it the Science Times, the New Yorker, and lately any book by Haruku Murakami- there is an ebb and flow between the read, the thoughts of the moment and the cacophony of the commutation orchestra. All this input is punctuated with the pull of sleep- a not-too-distant memory from a few hours earlier.

The code of silence may surprise the spectator who has never experienced the mass transit commute into a big city. It is a satisfying start to the work day. A collective moment honored by all, and interrupted only by the call for tickets and the staccato of the hole-puncher making its way through the car.

This is the time-in between the quiet clamor of the daily migration, that I, along side hundreds with whom I share the experience, start my monologue for Wednesday, August 13th. Today I feel different. I woke up feeling the dizziness I have felt since December, but as soon as I transitioned from front lawn to platform, I knew this commute wouldn't be the same. While the details on the outside were identical to yesterday's, what was happening on a neuronic level was new. Something barely interpretable, but present none-the-less. Just to be sure I put it to the test. I added flourishes to the action walk up, walk down, walk across repeat. I try increasing my speed slightly and adding a rhythmic jump that I haven't known for some time.

So many take a stairway trip for granted. I've watched how effortless it is for most - not a second thought, never even grabbing the handrail. I haven't had that luxury since I was 20. But today, I added a little skip to my downward trend. Taking a moment to experience that minor change, and relish it later as I write- it's a nuance that excited me for what I might notice on the way home.
Wish me luck.

MS Optical Illusion...Just Because You Can't See It, Doesn't Mean It's Not There...

by Linda of BrainCheese

I'm sure by now you've all seen the famous optical illusion of the old woman/young woman in the above picture? You DO see both images, right? The old woman has a feather in her hat as does the young woman looking over/toward her right shoulder?? If not, keep staring at it...it will come to you...eventually.

I've decided Multiple Sclerosis is like an optical illusion...very little about the dayumed disease is truly visible, and yet we SEE the disease showing up in our every day lives via fatigue, pain, vertigo, visual changes, etc., because we are LIVING with it. All those nagging symptoms that remain most likely UNSEEN on MRI, blood work, or even physical exam are easily identified through the eyes of an MSer. But for those "outsiders" that just catch glimpses into an MSer's life, it is even more difficult to understand what they cannot "see".

I have a strange hope that if they just stare at us long enough (metaphorically speaking or not!), eventually their vision will adjust to what we MSers see on a daily basis...both the obvious and the hidden parts of this disease. It's just a late night thought...

Shauna of Bugs, Bikes Brains tells a story of Shakespeare, King Lear, and Illusions

in "Out Damn Spot!!"

When I got to university, conicidentally the same one my father attended, I chose to take sociology rather than English. I had had enough of trying to figure out what authors were alluding to. However, by my third year, I needed more electives to fulfill my degree requirements and I ended up taking a first year English course from a legendary prof, sometimes referred to as Snapper. I was heavily involved with campus radio at the time and he asked me to produce a radio play our class was going to write based on Gulliver's Travels. That was a blast. He also had us divided into groups to come up with a board game based on Beowulf. That was a lot of fun, too.

Strangely enough I ended up taking more English courses, including 20th Century American and British Lit from my own Dr. Phil and a drama seminar from Snapper. Snapper was so-called because of his extremely dry and quick wit. In the drama seminar we studied a number of plays dating from ancient Greek and Roman times to the 19th centruy. I admit I was lost during much of the seminar, just not able to see through to the deeper meaning of most of the plays. I guess I was too linear in my thinking at the time as my abstract thinking has improved with time.

I don't recall which Shakespeare play we looked at in that class, but the same week we were studying it, a Garfield cartoon appeared in the Sunday comics that made it all clear to me. I've done a brief inernet search and can't find the exact strip but the punchline was "Things are not always as they appear to be".

I had a brilliant moment of clarity. Suddenly, Othello, which I had seen at Neptune Theatre in Halifax in Grade 9, King Lear from Grade 12 and now my university Shakespeare play made complete sense. I took the comic strip to Snapper's office and placed it before him. "This is it, isn't it? This is what it's all about!" You'd think I had just won a Nobel Prize or Olympic medal, I was so proud. Snapper read the strip, nodded, and said, "That about sums it up".

Since then I have enjoyed a few Shakespeare plays, live, and movie versions. After watching Mel Gibson's Hamlet, I asked my mother to make me a cape like the one Mel wore in the movie. I wear it a couple of times a year on chilly fall and spring evenings with a huge, gorgeous, Scottish brooch on the shoulder to hold it in place.

Several years ago I was tutoring a friend's younger sister. This girl was extremely bright but was having difficulty in written communication. We were working on her writing skills for her English course in which they were studying Romeo and Juliet. She was able to identify scenes and acts to illustrate points her teacher had made, something I could never have done in a million years. While working with her, I let her in on the secret to Shakespeare.

Remember Three's Company? Every single episode revolved around a misunderstanding of some sort where things were never what they appeared to be.

My dad's father, my grandfather, gave my mother a copy of Shakespeare's complete works. It's a 100 year old, leather-bound book that now sits on my shelf. I rarely open it as I still find the language tedious to read and the internet makes it so much easier to look up a reference.

The whole point of this post, inspired by Linda at Brain Cheese, is that like Shakespeare's plays, MS offers up as its theme "Things are not always as they appear to be". Some of us are walking, talking, biking illusions. We have MS but don't appear to have anything wrong at all. Some of us have mental deficits that have resulted in having to retire from the workforce early. Some of us have physical deficits that belie the mental acuity we have maintained.

Looking at an MRI filled with lesions of the brain, one may conclude a severe disability. Or one lesion may lead to the conclusion of no disability or even symptoms. But we know that presence and number of lesions don't always correspond to disability. And that's why MS is an illusion, a Shakespeare play. We have lesions we want to be rid of, no matter the amount of damage they do. And that's why, like Lady MacBeth, our universal cry is "Out damn spot!"

S.

This concludes the 18th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on September 11, 2008. 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, September 9, 2008.

Thank you.

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