December 24, 2011

Multiple sclerosis linked to different area of brain

Multiple sclerosis linked to different area of brain

Oh goodie, goodie. Apparently my thalamus is shrinking. Like a 70 year old's. I am upset. I've always liked my thalamus, rounded and plump as it oughta be. Now I am envisioning it on a Lindsey Lohan reducing diet, complete with drug enhancements and untold and weird cellular attacks.
While I am enchanted by the thought that people are still interested enough in MS to research it using very expensive equipment, none of the research seems to be leading to effective treatments. Just more bad news.
Well, I'm lying. There are some exciting new developments hovering on the horizon. Things like remyelinating drugs, treatments that slow the disease and don't merely mask its effects, good stuff like that.
But they are slow in developing, and meanwhile, my thalamus is shrinking...

On the other hand, I now have a perfect medical explanation for why I am going crazy!

November 17, 2011

medication tango

Being a "patient with MS" means being a patient on a cocktail of drugs, most of the time. They pitch and yaw you, spinning you between spasm and lethargy, dizziness and balance, drowsiness and energy. It's like walking a balance board with wobbly bits. There's temptation on that balance board, too. But you always pay.
Today, for example, I am totally stoned. Last night I took my usual medication to stop my legs kicking violently - it's a benzodiazapine and I've stayed on the same dose for a long time, for which I am proud, as these drugs are addictive, habit-forming, and require, usually, a regular upping for effect. I might, in fact, need to up mine as I wake so often at night, but I'm fighting that fiercely.
And last night I took a full pill for my leg spasms - baclofen - the mystical drug that has put so many people into wheelchairs. See, the same controls that make your legs spasm painfully are also the ones that make them able to hold you up. Usually I take a half pill. I didn't last night, wanting to try to sleep an entire night for a change.
So today I can barely see outta my eyeballs. I am too tired to drink my coffee. Taking the dog for his morning walk was like a trip in my head - I have little remembrance of the event, not of the temperature of the day or the smells of the air or anything. I finished my shower without noticing the plug was in the tub so the water was up over my ankles. Fair enough, I can't feel my feet anyway, but I should have noticed the sloshing...
So, I'll have to adjust down again and deal with the hours of nightmares I have every night, probably caused by my waking in the midst of them. And be tired because of that. And have painful bum spasms when I walk. Tra la tra la!
Added to that, I've been taking big doses of Vitamin D, 4000 iu a day, and now I find out it seems to be tied to heart disease. So will have to adjust that as well.
Of course, my copaxone dose remains the same. Always. No matter what I weigh or how ill I am. This baffles me, and makes me doubt it's efficacy, especially since I don't seem to be holding steady in my disease.
But maybe it's all just drug reactions? Or interactions? Or something?
I hate having to learn new dance steps all the time.

November 3, 2011

does being numb make my soul numb?

Being numb now for over a year, I often wonder what other effects it has on me. I'm not totally numb - as I've noted, sometimes I have pieces of sensation. The numbness is becoming more profound, though - affecting my balance, my ability to write and type and chop bagels without injury, blocking inner sensations from bladder and bowel and other more interesting places. (Dang it!)
Neurologists invariably say they are less concerned with numbness as a symptom than the other things like muscle weakness and such. It's not supposed to be so serious. And yet, it changes our lives.
 For those of us so enclosed, it's pretty disabling. It disconnects me from the world, makes it seem like I'm watching outside me through a pane of glass - and with my blurring vision, that isn't so great. And it has this other effect, too, of making me feel distant from people, from the world, like I'm shut in a padded room where even the room temperature doesn't make me feel.
Philosophically, it makes it difficult to care. Because I feel distant, I have to constantly make an effort to reach out through the fluff to touch others. It's easier to remain inside, where I don't have to make the effort.
  Maybe the exterior numbness is contributing to depression. I know I've battled depression for years now, and wading around there in the darkness does make things seem muted, edges less sharp, needs less urgent. I find as I get more depressed or more numb, I go for exotic tastes, different experiences, more carbs.
I probably just need to exercise more, to thrash my wooly body through space so that I can get a feeling for where my limbs are. Usually that helps The deep breathing helps, too. The exercise makes me more numb, but somehow makes that all right after all.
But oh, it would be nice to feel certain things again: the fur of my puppy, the touch of my friend's hand, the roughness of sand, the smoothness of rocks, the barrel of a pen when I pick it up to write.
And let's not spend too much time on this, but it would be smashingly lovely to feel making love again. Or a bit more, anyway. 
Maybe I need those steroids. Might help my sex drive, too. Of course, would grow more hair to be fried off by my friendly local electrologist, but it could be worth it...I hear ZZTop are still doing pretty well at their advanced ages...

Here are a couple of things from the National MS Society (which as usual, is the name of the US branch - why they think the rest of the world isn't a nation, I dunno) on numbness. Reality is, if you've got it, you're screwed. Not that you'll notice...

There are no medications to relieve numbness. Fortunately, however, most instances of numbness are not disabling, and tend to remit on their own. In very severe cases, a neurologist may prescribe a brief course of corticosteroids, which often can temporarily restore sensation. National MS Society

October 16, 2011

No wonder I feel dizzy

It makes sense that MS would affect the autonomic nervous system, something we don't talk much about since we usually deal with the muscle problems and cognitive problems and all that other messy stuff. But apparently, according to this study, we may be losing venous pressure while sitting.
Which a lot of us do a lot of.
PS: I think it's hilarious one of the researchers is named Venturi.
I still remember reading the deadly serious warnings on our BBQ about SPIDERS IN THE VENTURI TUBES. Of course when we looked at our BBQ after the long winter, mice had nested in it, and their woven bed made out of our lawn chairs had indeed prevented any spiders from seeking a home. But that's another topic.
Note, CCSVIers, this has nothing to do with blockages, so please don't fill my blog with "Aha! Proof!" rants. It's tiresome. And this is a preliminary study...needs repetition. Still, very interesting. I think we should be aware of the autonomic effects of MS as it may help explain the weakness that we feel and perhaps some of the vertigo.

Quantitative Colour Doppler Sonography Evaluation of Cerebral Venous Outflow: A Comparative Study between Patients with Multiple Sclerosis and Controls
summary: This interesting paper published by a group from Italy reports data from 27 healthy adults and 52 patients with MS. The difference between cerebral venous outflow (CVF) when lying down and CVF in the seated position which they refer to as ΔCVF was found to be negative in 59.6% of patients with MS and positive in 96.3% of healthy subjects. Statistical analysis showed that negative ΔCVF values were significantly associated with MS (p<0.0001). However there was no significant correlation with clinical variables.

The authors comment that negative ΔCVF has a hemodynamic significance, since it reflects an increased venous return in the seated position, and suggest that in MS it may be a result of vascular dysregulation from involvement of the autonomous nervous system.
authors: Monti L, Menci E, Ulivelli M, Cerase A, Bartalini S, Piu P, Marotti N, Leonini S, Galluzzi P, Romano DG, Casasco AE, Venturi C.
source: PLoS One. 2011;6(9):e25012. Epub 2011 Sep 22.
weblink: click here
category: Imaging
related research news: click here
    Multiple sclerosis
    Nervous system

September 17, 2011


A couple of weeks ago I was at the point of grabbing people walking down the street and shaking them by the shoulders and yelling in their faces, "Are you APPRECIATING THIS??? Are you enjoying that feeling of swinging along, not a care in the world, your legs just doing their job without question?"

It was kindof like during my marriage when I'd gone so long without a kiss I used to fantasize about grabbing strange men off the street and begging them to kiss me so I could remember what it felt like. Fantasize, mind.

You see, I was staring at my new rollator straight in the wheels and trying to imagine my life with the bulky but helpful thing and not succeeding. My muscles were twitchy and spasmy and my balance was shot and frankly I was more blue than the brilliant fall sky.
But bless this disease - for the last few days I've been able to walk - without pain, with my legs actually seemingly enjoying the travel.

It's been FABULOUS.

Have I mentioned it's been FABULOUS???

Of course, there are tradeoffs - I still do numbness, the PhD course, but I can move.
Well, sortof. Today, taking romping chutney out for his longer walk, I noticed a nasty twinge or two in my buttock. And the legs were somewhat less enthusiastic than they were yesterday, when I walked a lot and unloaded a truck and stood for several hours. Who could blame me - It was FABULOUS!

It doesn't matter if I slow down again now. At least I know I can still revert to my happy go walky ways. With any luck.
So, Mr. rollator, off to the cupboard with you! I know you're there if I need you, but for today I'm doing the solo thing.


August 25, 2011

Raindrops keep falling on my head....

Sometimes this MS thing is simply magical. It's trippy. It keeps me guessing.
I know I'm going through a flare up - hey, it's been the story of my past months - legs not working right, balance off, the usual. Had a mammogram and didn't feel a thing (blessings!).
And the other night, I took the dog out for a walk late in the evening. I didn't realize it was raining, so I went out in shorts and shirt and no raincoat. Chutney went off to do his thing and I realized I was getting wet - but not feeling it - my skin was gradually feeling colder, and about every few seconds I'd feel a cold prickling on one spot or another on my arm or leg, but overall, I couldn't feel the rain at all. I felt like I was enclosed in a bubble, safe from the rain, though my hair was starting to drip a bit and my glasses were freckled.
So magical!
Of course, there are unhappier things to total numbness, but sometimes, sometimes, the beauty of the strangeness of this disease overcomes me. I hope the feeling will come back one day, but while it's gone, it's kind of cool.
Time for that tattoo I keep talking about.

August 18, 2011

Swing low, sweet chariot...

Whew. These mood swings do lay a girl low. I'm already hepped up on antidepressants and yet I sink, lower than a frog's belly. Nothing tastes of anything to me. Music bores me. Sex is uninteresting (well, I'm numb, so, what do I expect?). Even the thought of a hot bath is too much.
I find myself oversensitive, tired of speaking to people, yet hungry for company and distraction. My body aches. I want chocolate but can't taste it.  I want wine, but it has no flavour.
It would all make me quite desperate except that I know it's just another sneak attack from the MS - I've been having more difficulty with my balance and my walking, so I know something sinister is afoot, and I expect the darkness in my soul is just a part of that.
I'm hoping to avoid the incontinence thing - it's a rare problem but when it occurs I am desperate beyond measure. I live in dread of wandering about, smelling vaguely of pee, yet I know when and if it does happen, I'll just have to dig deep and keep going on. Like those books that are proliferating everywhere that say "Keep calm and carry on". Or "Eat cupcakes and carry on", which I prefer. I might be able to taste a cupcake.
I know a woman who has terminal cancer. She's not in pain yet, she knows she is going to die soon. She is the most cheerful person I know - handles it all with aplomb, is kind and sweet to all, is the sort of woman who says I love you to her spouse 10 times in one phone conversation. I'm trying to learn from her, as I pray for her. I wish I had her jollies.
Ah, I'm probably just pooped from entertaining folks. And other, grimmer events. I'm sure it will pass, because I just heard a seagull scree outside my window and I had to step out into the cool night and feel the breeze on my skin. I can feel little cheery sunshine lines springing up from my heart. they're faint, as yet, and if I let myself think over the events of today, I'll squash them out. So instead, a cup of tea, some mindless entertainment, and early to bed - and the hope for a sunshinier tomorrow. It's about time for this roller coaster to head up again.

August 7, 2011

Cheeriness, or how not to constantly spit

Today I arrived at church with my dress on inside out. I knew it was a bad day, that I wasn't fully functional, but that's the first time that had happened.
Totally shrinkingly embarassing. So I laughed and made light of it, joked about my drunken walk to communion (my balance is off, too) but one has to wonder what people think.
So  try to laugh and be amusing but inside I am curling into myself and wishing I could vanish.
I'm just waiting for the moment I become incontinent and don't realize it. Hoo hah.
But I'm sure I'll make a joke out of it.

July 14, 2011

MS Society of Canada - MS Updates

MS Society of Canada - MS Updates

Updates on the CCSVI studies funded by the MS Society. Looks like lots of progress is being made. Results probably early next year...

July 8, 2011

CCSVI and the lure of the "benign"

One of the points CCSVI advocates make is that the treatment is benign, that there are few, if any risks, that it may as well be done as not.
I'm a nurse and I have to tell you the thought of introducing a catheter to any part of my body (but especially the vascular system) fills me with a bit of fear.

I know I'm a chicken. All of my rellies died of cancer (just about) by the time they hit 60.  So the fact that I am on a long term immune system modulator gives me pause, lemme tell you. Every time I inject the copaxone, I think about how a. they are not completely certain how it works, b. it doesn't seem to slow the eventual progress of the disease, just reduce flare-ups and maybe lesions, which everyone agrees don't really predict disease outcomes, c. how since I've been on it, my body doesn't swell up with mosquito bites any more and how weird that is and how there may well be cancer cells sneaking around my body at this VERY MINUTE looking for a good place to lodge and grow, happy and healthy.

I'm on an antidepressant, too - started before my diagnosis, and it's supposed to be doing something for me but again, no one knows what, or whether the depression is caused by the MS or just a reaction to it or to the constant pain, or whatever.  I've withdrawn from antidepressants before and it is some scary stuff, believe you me. They obviously do something altering to your brain and I'd feel a whole lot better if somebody could show me the "insert tab a into slot b" directions for how it worked. But they can't.

Why does the thought of a catheter thingie seem more risky than these steps? Well, I've seen the damage from bad insertion of things (some jokesters might say  - like my kids...- but I love them, so perhaps not..) I know that whenever you put something into your body of the metal or unnatural kind, in places where things are not usually put, you get some damage.  Could be little damage, and worth the risk - such as when you get a screening colonoscopy (which also result in some poor outcomes, however) - given the risk of the alternative. Placing a stent in your heart, for example, is not just one of those things you get done cheerily and wander off to be your regular self.  There is damage caused by the manipulation of tissue that is normally protected.

I've always had troubles with my neck, being a short person with significant stenosis and a lesion or two back in the spinal column. I fear chiropractors manipulating there ever since I heard of strokes caused by neck manipulation. So the thought of a snaky tube going up through those vital spaces fills me with fear.

And yet, the thought of a potential cure for the awful symptoms I live with every day is tempting. Being part of the study that is being done on all those here in Canada who are being followed up for the "treatment" interests me, too - after all, some days I don't feel I am much use except as a medical curiosity.  Every day I take up my arms in battle against MS.  Sometimes it is wearying.

But I've never viewed the procedure as benign.  And of us who have had urinary tract infections after a catheterization know of the risk of introducing illnesses.  Many people coming back from India where they have had medical care end up bringing along a superbug with them, which then spreads throughout our hospitals. And others have other bad results, from spasms to neck problems to this latest report - death by stroke.

This poor woman.  She was basically healthy, had symptoms that were nasty, and the certainty that they would most likely get worse.  But the hope of this "benign" procedure was held out to her  - and she chose it - and she lost, horribly. I know everyone has the choice in this case, but isn't there some responsibility for the medical profession to give the right advice? And maybe she received all the information and decided to continue, I don't know. But if you read the article, some interventional radiologists don't think they should be offering an untested procedure.

Brant-Zawadzki refuses to do the procedure even though people with MS are clamouring for it.
"I do think that physicians themselves believe they're helping these patients, but unconsciously there's an enablement going on of what could become self-harmful, if not a truly self-destructive process."

I've met a lot of people with chronic illnesses who do become self-harming with the various treatments they take - before I was diagnosed, I was told I had fibromyalgia.  One of the members of the support group was choking back guafenisin to treat herself based on a protocol someone had created - a dangerous idea, as the side effects are grim. Others are taking opiates for the pain, gradually increasing the doses until they become at risk of falling or doing damage to others.

It sucks having a chronic, incurable disease.  We all want a magic pill.  But we need to be sure it isn't more of a Snow White apple, laced with more poison than benefit.

My deepest sympathies to Maralyn Clarke's family.

July 3, 2011

A positive outcome from the CCSVI urgency?

Good news today from the worlds of MS research. As a doubter of the CCSVI hypothesis (but still interested in hearing about it, as aren't we all!), I was excited to see that research in other areas is stepping up as well. An evil drug company is collaborating with the UK National MS Society to work on research that focuses on neurprotection and repair, two areas I find most valuable. And fascinating. And perhaps globally useful for other forms of brain damage...

The funding is for innovative research, and given to universities and non-profits as well as a separate fund for for-profit agencies focused on making medications that will give money.  The innovations in research funding is the sort of program that allows university researchers to explore new realms and perhaps come up with results that answer more than the initial question.

I'm also interested to hear about the areas of research - while they are looking at the causes of the inflammation occurring in MS, they also seem further ahead than I knew.  I didn't know we had knowledge of the ion channel changes or the sodium/calcium exchanger roles in MS. Fascinating stuff, if you like the biochemistry side of things, and a real source of hope if they can fix these cellular changes. Who knows if CCSVI helps these changes occur, but since the procedure seems to be limited in its effect, and require re-treatment, wouldn't it be nice if we could treat the outcomes, biochemically, of whatever changes are going on in the brain, whether infectious or not?

I dunno, but I am encouraged there is progress going on in all sorts of areas of MS research and that everything, from the large interventions to the tiny ones, is being examined. Maybe all the press about CCSVI helped, though this collaboration was created before Dr. Zamboni's study was released. Let's hope all the noise leads to increased and improved research in all areas of MS. (Bolding is mine)

Merck Serono and Fast Forward Announce Recipients of Funding for Multiple Sclerosis Research

GENEVAJune 30, 2011 /PRNewswire/ --

  • Merck Serono and Fast Forward Provide Funding of Over $1 Million to Accelerate Early Stage Research in Multiple Sclerosis
Merck Serono, a division of Merck KGaA, Darmstadt, Germany, and Fast Forward, LLC, a not-for-profit organization established by the American National Multiple Sclerosis Society, today announced the second group of recipients to receive funding through their collaboration, which is designed to speed research advances in mutually selected, high potential areas of multiple sclerosis (MS) research.  
The awards total over $1million and will be distributed from two funds created by Merck Serono and Fast Forward to encourage early stage drug discovery for MS: the Accelerating Commercial Development Fund which is allocated to development programs for for-profit entities and the Accelerating Innovation Fund which is allocated to innovation projects and available to university-based investigators and seed-stage for-profit entities.

Merck Serono and Fast Forward distributed a call for proposals to fund projects focused on central nervous system neuroprotection and/or repair strategies. These priority areas were determined by a joint steering committee comprising Fast Forward staff and representatives from Merck Serono.

The following organizations will receive funding:

Under the Accelerating Innovation Fund:
Howard Florey Institute, Carlton, Victoria, Australia (Project Director - Bevyn Jarrot, Ph.D.) will receive $275,000 over 12 months to advance the development of molecules that target Nav 1.6 ion channels. In MS, there is a change in these ion channels, which contributes to abnormal nerve function. This project will focus on molecules which could potentially prevent this abnormal function, thereby protecting axons from further damage.
The Gladstone Institutes /UCSF (Project Director-Katerina Akassoglou, Ph.D.) will receive $300,000 to conduct testing for the identification of small molecule inhibitors of microglial activation. Microglia are part of the resident immune system in the brain and spinal cord. Activation of microglia in MS is thought to contribute to the inflammation and nerve cell damage associated with MS.  In the funded studies, the investigators will focus on developing novel molecules that have the potential to inhibit the activation of microglia in MS.

Under the Accelerating Commercial Development Fund:
Axxam SpA, Milan, Italy (Project Director -Michela Stucchi, Ph.D.) will receive $430,590 over 18 months to advance the development of small molecules that target the sodium-calcium exchanger NCX1 on axons. NCX1 functioning in reverse mode is thought to cause nerve cell death in MS. Axxam is developing molecules to prevent NCX1 activation and thus prevent axonal injury and ultimately clinical disability in MS.

"We are pleased to announce the 2011 funding recipients who will work to advance exciting early-stage projects in MS," said Dr. Bernhard Kirschbaum, Merck Serono's Head of Global Research and Development. "We are committed to advancing research that has the potential to improve understanding of the disease, and ultimately result in the development of therapies to help people living with multiple sclerosis."

Merck Serono and Fast Forward entered into an initial two-year, worldwide agreement in March 2009, and recently extended the collaboration. As part of the up to $19 million collaborative agreement with Fast Forward, Merck Serono provided the majority of funding for the research awards, with Fast Forward contributing 10 percent of the total financing of the awards disseminated from each of the two funds.

"The potential of multiple sclerosis research currently in progress around the globe holds great promise for improving the quality of life for people living with multiple sclerosis," said Dr. Timothy Coetzee, Chief Research Officer at the American National MS Society and Fast Forward. We are pleased to have the opportunity to advance that promise through the continued collaboration between Fast Forward and Merck Serono. Our commitment to furthering research that will end multiple sclerosis remains steadfast, and we look forward to learning more from the results of these innovative research projects."

Photo from:

June 30, 2011

Whoopi Goldberg and I

I've gotten sortof used to having my legs not work particularly well by the end of the day. I expect that. But I absolutely HATE those days when the muscle controlling my bladder exit decides to do its job in a sloppy way.
It's warm. I don't like the three underpant days when it is warm. Or anytime, actually. I spend my time gazing at washrooms and wishing I was a man with a longer tube. I don't feel the urge to pee, until it is too late. I don't seem to be able to empty fully without abdominal support. And I hate hate hate the thought of wearing a pad that will hold the pee like a baby's diaper. I dread the smell oozing out around the edges.

There are so many indignities with this illness. I'm okay with a lot of the things that bother others - using a cane, staggering, forgetting things, getting lost, storing the milk in the oven, losing my balance. But there are a couple of things that mess with my head.

Losing my vision terrifies me. And incontinence is just unspeakably awful.

I am supposed to drink much fluid to avoid growing more kidney stones. How? I'm supposed to be (and like to be) a sexual being - how? I want to be pretty - how, with the miasma of stale pee surrounding me?

On the good side, my dog finds me intensely interesting, and picks up any undies I discard momentarily onto the floor. I'm thinking of training him to take them to the washing machine.

Which he likes anyway, since recently, it smells a lot of pee.

I can only hope this, too, passes. Pun intended.

June 25, 2011

Zoom Zoom!

Every once and awhile I wonder about how long I will be allowed to drive. I'm distractible, yes, but it's the leg twitching and such that really could make it impossible. Then I run across this article:
Check it out....

June 19, 2011

Being positive and all that crap

Well, it's sunny.  I am wearing my favourite turquoise shirt. I can still see well out of my left eye. I'm almost done a huge project. I managed to make goodies for church. People seemed to like them.

I did bring the goodies half an hour late, though, having forgotten the time of church. Because I've only been about 10 times already. Last week, though, I had a meeting a half hour later, so that information supplanted what I had had in my brain.

I got the results of my neuropsych assessment the other day. The results weren't that surprising, but the "instructions to employers" made me want to sit down and cry. Apparently I am so distractible I need small chunks of information as a time. I need people to look me in the eye to ensure I am paying attention. I can't be expected to do boring jobs. If I have a project, I should plan to do it in 10 minute segments, alternating with other jobs and breaks, so that I can maintain focus.

Well, heck, I've been doing that for ages, just not deliberately.  I start something, get distracted, start something else, realize I've forgotten to finish the other thing, and so forth.  I frantically try to order my environment, but I get distracted and put down a paper here, my glasses there. Then I can't see, so I go looking for my glasses.  And after I find them I have no idea where the paper is. Maybe the dog ate it. At least I think I have a dog. He's here somewhere.

Some days, as they say, it isn't worth chewing through the restraints.

Today, walking without my cane and experiencing total fallabout by the time I'd got halfway around the route, I wished for restraints.  And a comfy bed.
Today, as I hustled into church late, I wished for restraints, or a calendar that beeped at me more regularly. I need to put alarms on EVERYTHING and that is annoying.  Especially as I forget to enter stuff into my calendar or add the alarm.
And then there are those moments of "inappropriate sharing", when I wish my mouth had a bit of a restraint. But that would require the memory to remember what effect my talking had had before, plus the ability to read others, which I seem to be losing.
Aw heck.  Better go out the dinner on, and then sit right by the oven, so I don't set fire to it. It's just SUCH a good mental day.
And we won't get into the pain. I wish I could forget THAT.
Oh Goethe, you rock.

June 13, 2011

Driving just isn't the thrill it used to be - or maybe it's a thrill in a different way, rather

When my dad was dying of cancer, he was pretty drugged up. I remember looking at the bottles of opiates and pain killers of a variety of sorts piled on the kitchen table, and seeing him choke down handfuls of them to keep away the endless pain he suffered.  Then he'd get into his car and drive. It was terrifying but in reality, he still drove pretty well. I'm certain he was impaired, but he'd driven in the area for so many years that it was almost automatic.  The big risk was from unexpected events. I sat very quiet when he drove and tried not to be distracting...but he just didn't want to give it up.  For him it was freedom, life, a sign he still was who he had been.
 My MS is starting to affect my driving.  Part of it is the lack of familiarity of the roads around here, some of it is a leftover from an optic neuritis bout, some of it is my distractability, and I'll bet the GPS lady isn't really helping, either. I need to get a more global view of Halifax/Dartmouth rather than the tiny view in the GPS window. But it's a bit scary. And I hate the thought of losing an ability to drive.  Like my dad, it's part of my identity. I drive well, overall. I like being able to just take off if I want to. I like the idea of the convenience, the help for me and my difficulty walking, the sweetness of not having to carry piles of groceries from pillar to post.
But my life is getting limited. Tonight, for example, I was supposed to go out - but it is raining, and I know the roads will be covered with shine and glare when dark, and I can't handle all that visual input and drive at the same time.  It is totally overwhelming. And dangerous. So I'm staying in.
At least til I get my new glasses. And the ON calms down. Then we'll see. As it were.  Because I don't want to give it up.  Not yet.

May 29, 2011

What's up with the brain?

I would venture to say that those of us with MS probably know more about the brain than other folks.  After all, we live with it changing every day, we see the effects of these changes, we adapt around them as we can. A friend of mine posted an interesting article about the 10 myths about the brain: and I found it rather entertaining to read, knowing what we MSers know.
To quote:
1. We only use 10 % of our brain: well, with MS, we pull in recruits from all over the brain for the littlest functions, covering for the areas where black holes cause transmission losses. We can see it on fMRIs - while others may use a curlicue of brain activity, we use a wonder our brain aches!

2. "Flashbulb memories" are precise, detailed and persistent: Hey y'all?  Remember that guy's name? Or why you are storing the iron in the fridge? Or where the iron is this time?

3. It's all downhill after 40, 50 60 - ah, the luxury of time. Actually, those of us with MS know we have to keep our brains active and use them all the time, or the slippage is truly magnificent.  We are on medications that muddle our heads, too, all to keep our cranky bodies from misreading the messages from on high and pushing us into spasms and twitches. They make us foggy. But first thing in the morning, we rock.  Ask us anything. Just not after 3 pm.

4. We have five senses: The authors here argue that we also have proprioceptive senses. Those ones that tell us where we are in space. I laugh.  Hollowly. As I fling my body here and there.  Something about losing the sense of touch and balance does something to that proprioceptive sense. I personally often think I am standing up straight when I am actually leaning slightly to the left (political reasons, sorry) and thus I weave elegantly like a sailboat in the wind. And don't ask me where my foot is at the moment.  It could be anywhere. I assume it is at the end of my leg, but unless I look, I can't really be sure of that. Same goes for one of my breasts. Unfortunately my stomach remains.

5. Brains are like computers. He argues this is a myth. I argue our brains are like computers using Windows (TM).

6. The brain is hardwired.  Well, we know it's plastic, in our case somewhat like silly putty, given to recording images that get stretched as we play with them and melting into a flat disk if not played with...Hey, if we didn't rely on brain plasticity we'd be staring into the air, gasping slightly. Hurrah for plastic brains! Although if I am told to play Sudoku ONE MORE TIME, I am going to explode. Not all of life can be reduced to squares of numbers. I prefer to struggle with learning to play the ukulele.  Many good returns from this - music is multitasking for the brain, plus if I learn to play it well enough I can use it to annoy all my friends and relatives by singing "tiptoe though the tulips". Plus it hides my tummy.

Well, I could go on, but you get the idea. Life with MS is an exploration of the brain in all its marvels, whether we want to or not. Betcha you didn't know you could have hiccups anywhere, did you? Try them in your toes for a treat.

Heading out for the MS walk today, where I hope to be able to persuade my brain to let my legs do their thing without interruption. Lately it's been telling my glutes that knotted up is the way to be. Makes it hard to do that forward swing thing so I look a bit like Tim Conway doing his old man impression. Mind you, I laugh at the thought of him, so maybe that's a good thing...

May 24, 2011

Is it all about the poo?

My brother sent me on this podcast  from freakonomics radio about how a man with MS was "cured" by getting a fecal transplant.  Apparently, if we have bad germs in our guts, we can get some good germs from someone else's poo and allow them to inhabit our guts.  This will remove the harmful bacteria that live there and therefore return us to health. Assuming they beat up our bacteria and take over.

It's an interesting point.  If we are, as described in the podcast, 10% us and 90% bacteria, there's something to be said about reorganizing our friendly colonists (pun intended) to be more friendly. And, after all, that discovery of H. Pylori and ulcer causation revolutionized the treatment of ulcers.

And, truth be told, there is much research to indicate that MS is probably infection-related, given that it involves an autoimmune response that must be triggered somehow.

I'm not sure about having a poo transplant, though. There's a lot of nasty stuff in poo, much of it I would not want to visit.  Montezuma's revenge, cholera, who knows what else. I'm reminded of the rabbits of Australia - brought on for hunting, reproduced like mad, then they had to treat the rabbit problem, and lost control of that, too.

And I can't help but wonder if some of the same magic thinking is going on here that hangs around those in support of cleanses. Our digestive tract is full of little creatures that change and reproduce and wriggle about depending on what environment we give them. I think they'd be hard to manage long term.

The fellow they interviewed said that he was all better after his treatment, but time will tell. Relapsing-remitting MS is a trickster that way - you can think you have it beaten and then it sneaks up on you from behind (har har). I hope he stays well. But it's another tale of anecdote not making scientific proof.

I'm not signing up for the randomized controlled trial, though.

May 23, 2011

Being funny...

I was at a MS support group the other day and joking in that graveyard way a lot of us with MS have about the changes in the disease, the weird things that go on, the humour in our everyday challenges. It seems to me that a lot of us with MS have that kind of humour - there isn't much that can be done for the disease, so we may as well laugh and get on with things. As we can, lurching merrily about and etc, dropping things, wobbling here and there...

But one lass took exception to our joking about.  She was seriously upset about MS and felt we weren't taking things with the right sense of gravitas. She was right.  We weren't. Right then.

MS is so often invisible because we don't get seen when we are down and out.  We go to ground, we hide at home, we don't answer the phone, we rarely speak.  We deal with our sorrows and losses privately, knowing that there is a limit on what we can expect friends to tolerate, that daily complaints just bring us down, that our private struggles don't make for good press.  The disease doesn't go away, it doesn't get better, we aren't "fighting" it like one does with cancer (because fight as we might, we can't beat it).  It becomes boring to share. Even a disease like MS that changes every day can become same old, same old.
This doesn't mean we don't spend several days of our lives destroyed by grief, or struggling to get anything done, or depressed to black.

When we get together, we share our challenges, but we also have a good laugh.  People who don't deal with this chimera of a disease don't understand what we go through, and it feels so good to laugh with those who can nod and add to the joking. It helps. Like this drawing by Bill Watterson, seeing others laugh can't help but make you smile.

So I say, let's laugh, giggle, snort, guffaw, and hoot this disease into the corner as often as we can.  It will creep out again, but let's enjoy our sorrow-free moments.  Let's wallow in them.

May 17, 2011

A kiss is just a kiss....

Epstein-Barr virus
But "kissing disease" (Epstein-Barr virus) can be that gift that keeps on giving...
I had mono my first year in University.  Sick as a dog, I was. Sicker than your average dog, in fact. What really burned my hide besides the fact that it nailed me neatly in time for exams (I slept through my biology exam) was that I HADN'T KISSED ANYONE for months before I got it. It seemed unfair.  Should have the kissing, anyway, if you're going to suffer with that stuff. It was nasty.
The next year, my dad was diagnosed with non-Hodgkin's Lymphoma. Apparently it is related to Epstein-Barr viral infection, which he had had in university. He fought it, bravely, for 10 years, gradually whittling away to a pencil stick of a man who gleefully ate hot fudge sundaes while I tried to diet and then told me over and over again how wonderful they tasted. "Let me describe it to you," he'd say. "It'll be almost like the real thing." He was so thin I didn't begrudge it, and we snorted with laughter at each other, me trying to get skinny, he trying to get fatter.  But when he was diagnosed and they told him about EBV, I felt a little shudder run up my spine.
Then I get diagnosed with MS, the first in my family to do so. And as I read about the condition, I see that ol' EBV raising its ugly head again. Surely they could come up with a vaccine for this? They've managed one for chicken pox, another herpesvirus - I know vaccines for herpesviruses are challenging because of these viruses' nasty habits of hanging about forever in your nervous system (think shingles, that other herpes that we all hope never to have to explain to anyone, etc.).  But I'm beginning to think that those of us who do get really sick with EBV have pretty serious risks of developing other nasty and healthcare expensive things. Might be worth the investment.
And I'm not the only one...
Whaddya say, big pharma? Got any vaccine in that pipeline for MS prevention?
A virus similar to herpes could be a risk factor for multiple sclerosis
Publication Date: 2011-05-17

Tel: 34 958 242 071

At present, while there is no cause known for this condition, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition, such as the Epstein-Barr virus. Scientists at the University of Granada have found a relation between the Epstein-Barr virus –which belongs to the herpesviruses family–and the development of this condition

The Epstein-Barr (EVB) virus –belonging to the herpesviruses family, which also includes the herpes simplex virus and the cytomegalovirus– is one of the environmental factors that might cause multiple sclerosis, a condition affecting the central nervous system, which causes are unknown. This has been confirmed by University of Granada scientists that analyzed the presence of this virus in patients with multiple sclerosis. Researchers analyzed antibody levels, that is, antibodies that are produced within the central nervous system and that could be directly involved in the development of multiple sclerosis.

Multiple sclerosis is a demyelinating condition affecting the central nervous system. Although the cause for this condition is unknown, patients with MS seem to have genetic vulnerability to certain environmental factors that could trigger this condition.

While other studies have tried to ellucidate whether infection with the Epstein-Barr virus could be considered a risk factor in multiple sclerosis, what University of Granada researchers did was conducting a meta-analysis of observational studies including cases and controls, aimed at establishing such association.

A 151-patient sample

In a sample of 76 healthy individuals and 75 patients with multiple sclerosis, researchers sought a pattern that would show an association between this virus and multiple sclerosis. Thus, they determined the presence of ant¡bodies to Epstein-Barr virus antigens synthetized within the central nervous system. Simultaneously, they identified viral DNA to measure antibody levels to EBV within the central nervous system, and the presence of EBV DNA respectively.

This piece of research was conducted by Olivia del Carmen Santiago Puertas at the Department of Microbiology, University of Granada, and coordinated by professors José Gutiérrez Fernández, Antonio Sorlózano Puerto and Óscar Fernández Fernández.

The researchers found a statistically significant association between viral infection and multiple sclerosis starting from the detection of markers that essentially indicate an infection in the past, while markers that indicate recent infection or reactivation are not relevant.

The researcher Olivia del Carmen Santiago Puertas state that, as the factors triggering this condition are still unknown “studying them is important to try to develop a prevention method”.

This study found an association between MS and some viral infection markers “but, to obtain a definitive conclusion, further research is needed with a significant number of patients that combine different microbiological techniques, where the different viral infection markers are recorded, and assessing patients’ clinical state even years before the onset of the first symptoms of multiple sclerosis”.


- Relation between Epstein-Barr virus and Multiple Sclerosis. Analytic study of scientific production. European Journal of Clinical Microbiology and Infectious Diseases. 2010.

- New Strategies and Patent Therapeutics in EBV-Associated Diseases. Mini-Reviews in Medicinal Chemistry. 2010.

Contact: Olivia del Carmen Santiago Puertas. Department of Microbiology, University of Granada. Office phone: +34 958 242 071. E-mail address:

Subject: 39;
Country: Spain;
Institution: Educational Body (School, University);
Category: Result; 
RCN: 26753
Quality Validation Date: 2011-05-17

May 8, 2011

Arrgh. I feel like a pirate...

I think I might have been doing a bit much.  Today I have a left eye twitching like Inspector Dreyfuss, my right foot seems to have forgotten how to hold its bones together, my left foot wants to do toe taps, and I've developed a wide stance and walk. And for some reason my right buttock thinks it needs to knot up. I'd write more but my vision is on strike. The only difference between glasses and no glasses is a qualitative change in the impressionistic view of my world. Whew.
I think it's time for a spot of lunch and a nap. And then some stretching. Maybe I can peel off the pirate cap after that and regain some sense of normalcy.

May 5, 2011

that MS Waddle...

I am just getting sexier and sexier. Met up with my wholly amusing and quite wonderful new neurologist today (these happy health care providers are throwing me off - everyone seems to be having a good time and it's even been raining for over a week straight) and he made me walk across the room and said, "Ah yes, that wide stance walk to keep your balance. Hmmm." I hadn't thought about it much before although I know I have times when I stomp about like a sailor on shore leave, striding this way and that, but apparently now, even on short walks, I've developed an attractive waddle. Nice. I blame my right hip flexors, who don't seem to be getting the message these days about locomotion - and my left foot, that insists on dropping to catch the ground with its toe. It makes an attractive sight.
And today, it made for an almost fall and a twisted ankle that made me shout.  Fortunately, Chutney the magnificent therapy dog was with me and proceeded to drag me forward with his leash and tangle himself around me and a tree to stabilize everything. He is so helpful.
So, to add to my middle aged spread, I've developed the "here's me head, me behind's coming" walk that my mother used to spot in others, plus a wide enough stance that this same mother would argue I looked "ready for anything".  She really was a shocking woman.
As for me, I think I'll take to using that cane thing.  Could be more debonair than waddling.

May 3, 2011

I'm a walker....sigh...

I've been part of the MS walk for 4 years so far. It's been a challenge every time. The first time, I walked it with relative ease.  The second time, I staggered with my cane, and was in intense pain by the end. The third time I volunteered and helped empty garbage and fill out surveys, which required me to stand all day and which put me in bed for a week. My plan was to avoid the walking part, which I felt was getting beyond me.

This year, I'm in a new location, and the walk approaches quickly. I should call and offer my volunteer time, but I'm fairly sure they are well covered for the coveted sitting positions already, and I'm in recovery from my move here to rainy Dartmouth, and even volunteering seems too much for me right now.

I've been lucky with my MS, in that I haven't had the sort of acute flare-ups that require hospitalization, etc. I think part of that is just that I don't bother calling the docs when I feel rotten - I just go to ground and wait til it goes away.  But I've had a bad few months, and things are, alas, getting worse. Foot spasms are now my constant companions, and my legs give me grief whenever I walk - my hip flexors just aren't that enthusiastic about the whole movement thing. My vision is often misaligned, and vertigo and I hang out fairly frequently.  My glasses no longer work for my right eye, the one that had the optic neuritis before. It's like a slow erosion of abilities. Fortunately, it's SLOW. I am so grateful for that.

My brain testing did reveal I have lost cognitive abilities, too.  Nothing to keep me from driving, YET. But that lurks ahead, too.

But hey, I'm an old lass. I've had fun, I've inner tubed the glaciers on Mt. Rainier, I've walked through Yellowstone, I've travelled in Europe, I've had a career that was rewarding and helped others. I've raised three wonderful kids and delight in them. I feel most for the younger people who get this diagnosis - they need a cure, they need better treatments, they need to be able to live a life like what I have had so far. My life isn't over by a long shot, but I am content to settle a bit, to change my focus, to give up some pleasures, having had the chance to experience them. Those younger MSers deserve that option, too.

So I'm going to haul my tired self and my glamorous cane and my puppy out to do the walk again this year. I probably won't be able to walk the whole way, but I'm going to give it a try. It's important.

I'm hoping those that read this blog feel like donating to the MS Society  - it's easy to sponsor me - there's an online form (click on the link above), or you can mail your sponsorship in.  Every tiny bit counts. The Society has been a huge help to me, and I'm looking forward to working with the new chapter here. They offer client services that keep people with MS and their caregivers better off than they would otherwise be, with support for devices and referrals and information and helpers. They fund research that is progressing quickly, especially now that stem cell research has been approved in the US. Help me help those that follow me. I'll do what I can.


April 2, 2011

Examining the brain...

Went for my neuropsychiatric testing the other day - a full day of brain tests and questions of vocabulary and memory things and attention stuff. Was totally exhausting, and I could barely drive home - arrived back, called the kennel to take care of the dog for another night, and sat, too tired to eat or move for the evening before I fell into bed.
So, what are the tests?
Some of them were silly for someone with MS - depression inventories aren't accurate if fatigue is your constant companion.  You do sleep more than usual, you do cut back on social activities, you do lose interest in sex and other things you enjoy just cos you are pole-axed tired most of the time.
Some of them were silly for someone with an extensive vocabulary and multiple degrees. Defining words that are monosyllabic is not a challenge, even if I am slipping. Reading familiar words aloud would only be a problem if I had severe muscle involvement or significant dementia.
Math - more challenging.  Trying to figure out patterns - difficult.  Understanding instructions for one test was almost impossible for some reason - I started off wrong, and when the kindly psychologist explained it again to me, I still had difficulty processing what I needed to do.
Paired words weren't too hard, although it took me 4 tries to get most of them. What was most astonishing was the complete vanishing of the information - usually one has a "tip of the brain" phenomenon, where you try to retrieve things and a variety of options present themselves.  No options presented themselves. It was dark inside there. I could hear crickets.
Counting backwards was tough until I figured out the pattern.  Took me a while, and if I did the math correctly, the letters I was supposed to remember were not available to my conscious mind - yet I could say them, often. Weird. It's like when I type and words come but my mind is blank. Very very strange.
I think, generally speaking, I did okay on most things, but it wasn't fun. If I had had to do anything after the testing, I would have crashed. I was almost in tears by the end of the day.
I should point out kindly Psychologist did offer to break the session if I was tired, but I wanted to get an idea for how I would perform after a full day. I'm still tired now, two days later.
I get my report in a couple of weeks, just before I leave. I'm wondering what they'll show.

March 28, 2011

Oh blessed drugs!

One of the things about this foolish, changeable disease, is that you have to do so much self-management, sometimes in spite of your doctor. One can always hope to be on the same wavelength, but occasionally the focus differs and you have to think it through yourself. My neuro told me that the Baclofen I'd been prescribed by another doc for spasticity wasn't really needed in my case since I didn't have any spasticity.
Well, true, then I just had twitches, not spasms. So he gave me drugs for twitches.  Fair enough.
But I've been unable to walk more than a block without pain for weeks now. Some of it is no doubt due to the kidney stone thing, but even once it was gone, my legs weren't working together.  One foot spasmed regularly. Pain and I became close personal friends.  And as someone whose big kidney stone was found halfway down the ureter (and I was in minor discomfort), when I feel pain, it should tell me something.
So today I decided to try a baclofen.  And you know what? It worked. I just came back from my first fast walk in weeks. My legs worked together with my knees and I could hoof it as I like to, fast enough to satisfy even the rampant poodle.  My hips swung along like they are supposed to, easily, cheerfully, enjoying the movement. It was f-ing amazing.
Motion is so wonderful to experience when you've lost it for awhile. There is something so mystical about the way a body works together, the way the hip swings in the socket, the way the shoulders move within the framework of muscles, the support and flexibility of the spine.  I am almost giddy with the joy of it all. Those of you, who can move easily - go for a walk. It's a true gift.

March 14, 2011

What MS means to me

The National MS Society in the US has created this blogging thing where you can write in what MS means to you. Sometimes I think they just have their heads up their respective arses, if you'll pardon my language. I THINK they were looking for positives.  It seems to be a current theme on some of these websites that you should be thinking "I have MS, MS doesn't have me" and talking about all the good stuff that comes into your life because of MS, blah blah blah.
Well, I'm as Pollyanna-ish as the next person, possibly more, and I try to see benefits in whatever life throws at me, but by GODS it is offensive when people who do not have MS come up with these campaigns. "MS means rallying around the ones you love" is an example.
Erm, don't mean to be snarky, but has anyone looked at how many of us live ALONE with MS? Hmm? And that we may not have people available to "rally around" us?  I have some lovely friends and family, don't get me wrong, but I would wear them out if I told them all that was going on with me.  They'd drop me quicker than a hot iron.  And why not?  They are all busy with their own concerns - sick parents, health crises, kid issues, rocky marriages, life. As Rick says in Casablanca, "Our problems don't amount to a hill of beans..."
But enough of that. The thing that stinks is that no matter how much you say to yourself that "MS doesn't have me", you are lying to yourself.  It has its cold fingers round your throat, right enough.  It lurks, waiting to screw up your life.  You can take care of yourself, you can eat right and smile and read positive things and breathe pure air and yet, it's there, waiting.
So hey, my approach is to just laugh it off.  Life is short. So what if I can't feel my fingers while I type this? They still type almost as well as they ever did  - today. And walking? I always preferred the sitting and having coffee afterwards anyway - it's just that now I have to plan to do it sooner. Biking? Well, unless I get a better helmet, it's over for me - balance issues - but hey, I've always wanted an adult trike.
Reframing loss is one thing, but laughing at it is even better.
Sometimes, though, it isn't so easy.  Sometimes Pollyanna leaves the building. Sometimes getting mad is the only solution, since self-pity is SO unattractive.  Which is part of the reason I tell myself I have Mad Sow - craziness notwithstanding.

March 3, 2011

"It's hard to take over the world when you sleep 20 hours a day." Darby Conley

I foolishly signed up for two writing classes recently, running concurrently. In the middle of them, I've now decided to move to Dartmouth, NS. I'm having some difficulty with all of this. See, right now, my body is demanding a healthy sleep in, a nap from 1:30 to 4 or 5, and then early to bed no later than 10.  It's hard to fit everything in to a day truncated like that, and I now understand why dogs and cats, despite their enviable smarts and ability to control us, have yet to take over the world.
Fatigue in MS is a weird thing.  Sometimes, it feels like water is welling up and gradually flowing over my head.  Sleep is irresistible, exhaustion so complete that even eating is too much to contemplate (those of you who know me know this is serious stuff). It feels like a remix of the mono I had in University, where all I could think of was sleep. glorious sleep. I sleep sitting up, I try to make it to lying down. If I'm walking, my legs no longer move effectively.  My batteries shut off.
Sometimes, the fatigue is cerebral. I can feel okay physically one minute, and then lose my mind the next. Can't talk, can't bear talking, can't even think of a thing to say. My lips don't want to move. Making decisions is almost impossible. I feel trapped within myself, deadened, mute. Even my hearing doesn't seem right. My vision blurs and I can't see well anymore. Parts of my visual field fuzz out entirely.
Sometimes, when I am feeling tired, if I get up and exercise, I can feel better.  Sometimes the thought of that is just too much to bear. Sometimes, when I am tired of speaking, I can still write. Sometimes I can't even read.
It's bizarre, and just when I think I have it figured out, it eludes me again. For awhile I was mainlining coffee to cope, but that doesn't seem to be doing it for me anymore.  I do know that if I go out at night, I need a coffee to see me safely home.
So, in the end, I wind up like Brain, planning to take over the world  - tomorrow night.