Thursday, April 18, 2013

Carnial of MS Bloggers #139

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

from Sunshine at Needle Fatigue

"I look up, I look down..."

“I look up, I look down…”

There are many MS symptoms that will not respond well to medical treatment; in short, you’re pretty much stuck with them.  Dizziness — my #1 symptom — is one of them, and so is paresthesia (numbness in the hands, in my case) and other forms of dysthesia (distortion of the senses).  One of the oddest things I’ve dealt with is the latter, in particular a distortion of proprioception, which is basically how you know where you are in a given space.  Ask my husband how many times I bang into doorways, with my glasses on.  And this is also why I am almost never without my walking stick for any great distances; if the dizziness won’t get me, the Weirdness (as I refer to that sense that I’ve suddenly stepped into another, vaguely syrupy dimension) will.  But I will say something positive here: although most forms of dysthesia may be out of your control, if you have proprioceptive issues, it is totally worth looking into balance therapy.

Sometime after that summer 2011 relapse, the neurologist suggested I give balance therapy a try.  Why?  Because it wouldn’t hurt.  (It was a good thing I had good insurance.)  But I was surprised that I really did derive some good effects from it, and I’ve just reminded myself of this lately.  The exercises the therapist gave me, I will now share for free.

The first exercise is pretty odd.  But it works.  And it may also improve your ability to read in a moving vehicle!  Take a business card or anything of that size with at least three sizes of font on it.  Tape it to a blank wall.  Now, keeping your eyes focused on the largest font, move your head from side to side, reading that text, for 2 minutes.  (Your head moves but your eyes do not).  No more than 2 minutes, but no less.  Do this three times a day if you can, for a few days, then graduate to the smaller font.  After a week, tape that business card to a wall with some kind of pattern (I used a map, but wallpaper should work).  Do the same thing.  Keep this up for a couple weeks before you start the next exercise.

Exercise No. 2 seems a little more normal.  But not much.  Stand in a corner so that you are protected from a fall on both right and left sides.  (You can put your arms out to the sides to catch you just in case.  If you have someone living with you I would enlist their help too, at first…)  Put your right foot in front of your left one (heel to toe).  Close your eyes.  Stand there for 2 minutes.  You will feel like you’re definitely going to fall.  But the important thing about this exercise is it’s a test of will power.  Say to yourself “I am standing perfectly still; I am not moving and I am not going to fall over.”  You’ll feel your calf muscles go nuts with the strain of keeping you upright, and in the beginning you will catch yourself falling.  Your brain is convinced that you’re teetering on some precipice somewhere.  But you know better.  You say “No, brain, I’m perfectly graceful standing here looking like a Degas ballerina.  I refuse to fall.”  Or something like that.  (If you are a man, please forgive me; I have no idea what the masculine analog of a Degas ballerina might be.)  Now do the same thing with the left foot in front of the right.  You will fail miserably in the beginning.  But with time, you will have a smug smile on your face when the 2 minute timer goes off and you haven’t wavered in the slightest.

Exercise No. 3 always reminds me of Alfred Hitchcock’s Vertigo.  In your corner, keep your eyes open.  Cross your feet just as you did in the last exercise, but keep your eyes open.  Now look up.  Look down.  Look up.  Look down.  Now look to the right side.  Look to the left.  Look right.  Look left.  Follow with your eyes as you go.  Do this for 2 minutes.  And yes, according to my therapist, 2 minutes has been scientifically verified as both the minimum and the maximum length of time to do all of these exercises.

I hope these are helpful for my fellow meanderers and weavers.  If nothing else, I just saved you a few hundred bucks and several hours at the physical therapist’s!


This concludes the 139th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on May 2, 2013. 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 30, 2013.

Thursday, April 4, 2013

Carnival of MS Bloggers #138

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


Hi All.  As you may know, I'm a director on the Board of MS SoftServe (see video).  The goal of MS SoftServe which is to help people living with Multiple Sclerosis to learn on their own terms is very important to me.  We are very close to making this a reality.  I ask you to make a donation of any size to bring this site to the Internet.  Our goal to get the site up and running is $64k. Please join me in support at any level!" (link to donate)




by Laura of Shine the Divine


soft silver secret
swinging just within arms reach
what have you to teach?
Pussy willow wild and free the halo of your mane caught me by surprise, what joy! Your secret softness is safe with me; most folks drive this road so fast. I watch as cars speed by this passage between there and there forgetting the footpath here where immeasurable treasures await discovery, the silky silver sort, hidden between all the other twisted trees. Before I lost the gift of stride, then learned to walk again, I too passed you by completely unaware for years. To be honest, I’ve always been a seeker, yet it was the losing that downshifted me into the slow lane. And I choose to meander whenever I can, with intentional steps even on days I could move more swiftly, grateful for this life and the mysterious paths that guide me to everyday miracles like this pussy willow tree, unique among its companions, growing wild and free.

Or an eagle, yes a majestic eagle delighting (I imagine) in lunch, perhaps for his family waiting in a nest in an exquisitely tall tree, talons gripping “someone” on the river-side of the highway. We saw him early yesterday afternoon on our drive to my neurology appointment. This seemed a good talisman and indeed it was.

It has been a while since I’ve written about living with MS. The MRI I had last Friday evening shows no new changes in my brain. It is exactly the same as it was a year ago. A YEAR! This is the longest span between exacerbations since diagnosis in 2009. My doctor did point out some tiny black holes; yes my brain like the moon is made of Swiss cheese. Well perhaps a better metaphor would be the vast universe. Did you know scientists actually know more about the universe, even the theoretical multiverse, than they do about the human brain? She said the spaces are not new, however she’d never showed them to me before. *Aha, perfect segue. I just mentioned what I’m blogging about to my husband who informed me she had shown these to me before. I don’t remember, NOT at all.

So while there are no visible changes in my brain, my family and I are clearly noticing some cognitive shifts. I’m imagining the black holes swallowing the words that go missing, as well as events everyone swears I was in attendance for although I have no recollection of “said happenings” happening.

It is very strange 1. To be able to visualize an object or person, to be able to describe it or them perfectly and have absolutely no idea what it is called or what their name is. Sometimes the word or name will come to me later; other times if no one else understands what I'm talking about and can tell me, it is just gone. I mean, yeah, I know everyone has this experience from time to time, especially as we grow older, but this happens to me as though I am a LOT older than my body chronologically is. It’s weird. AND 2. Weirder still is to be told repeatedly, “But MOM you were there! What do you mean you don’t remember?”  Or, “Yeah hon, she showed them to you,” kindly softened by, “but you were probably too sick at that appointment to remember.” Swallowed whole, into those tiny black holes apparently. 

I have some cognitive testing scheduled next month and that’s good. Maybe there will be some helpful hints and coping strategies, although so far charades works for devoured words most of the time, and the edited/deleted events of my life calendar will just have to be an annoyance others live with. This wouldn’t particularly bother me since in my mind these events never happened anyway, but it is uncomfortable when my kids use accusatory or at the very least exasperated tones of voice when I’ve forgotten something that it appears had been important to them. ~Sigh. ~ Then again they are teenagers, so if I didn’t annoy, exasperate and inflame accusatory tones of voice through forgetfulness, there would be plenty (ha, ARE) plenty of other opportunities to stoke the flames. The word thing is frustrating. My loving husband’s example teaches me however that these irritations are chances to practice compassion toward my self, this amazing body with a Swiss cheese brain doing its very best in every moment. And truly, how awesome and miraculous is it that for the most part this broken body functions quite harmoniously?  That any human body mostly functions harmoniously? 

I am in remission, have been for a full year. I can walk and talk nearly every day, though by evening things start to get MS’y. I’m not complaining, just explaining the ever-changing landscape of one person’s experience with MS.

And this landscape includes awe and joy and gratitude, black holes and missing words and speech that gets mangled by dysarthria and legs that sometimes just won’t lift on their own and a majestic eagle touching down to hunt along a highway and memories gone missing and pussy willows emerging wild on a country road meandered down slowly on an afternoon when it was all systems go in this body with a Swiss cheese brain doing the very best it can moment by moment.


I met an older gentleman at the dentist office today, I’m guessing close to ninety. He was struggling to sit down. Looked me in the eyes and started to share his story even as I slipped my arms into my coat, the bum knees, his survival of kidney cancer. I said I was sorry for his troubles, told him I could understand the difficulty with a body giving out, that I live with multiple sclerosis. He asked a lot of questions, seemed surprised that I could drive, and was especially curious about treatments these days. Then he told me about his wife whose life was lost to breast cancer and his daughter's too to ovarian cancer. And I felt such deep compassion, could feel his need to connect. I didn't have to rush out the door so I stood there for quite some time listening. No one escapes loss. The losing teaches us to slow down, the losing teaches to pay attention, the losing teaches us compassion. And when you live past ripeness, like this man and many lines cross your face, you meander your way along your path. 

I can't say if he sought out a kind stranger to pause with full attention, by the way he settled heavily into the chair with a tired, audible sigh, or if it was me, the open seeker catching a glimpse of the silver halo shining from his still dense mane, remembering (yes some things I do remember) today's Omer teaching from Rav Yael: "...Moshia yishrei lev. The Mystery opens the path of the heart." ~Psalm 7:11 on this the 7th day of counting the Omer. Yesod she b'Chesed, the Indwelling Presence of Love... "Notice acts of kindness and generosity that are bestowed upon you. Notice the moments you respond to yourself and others with love." Either way, we did.



This concludes the 138th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on April 18, 2013. 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 16, 2013.

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