November 30, 2010

Walking is hard!

I feel a bit like those awful Barbie dolls that used to be sold some years ago that would say, when squeezed, "Math is hard!" I can empathize with Barbie, with her spastic always pointed feet and her knees that bend improperly, her fixed hands. My body is a bit that way today, as the flare-up I've been having for the past week adds to the foolhardiness of walking all over the place when visiting my son - it was a lovely tour of Waterloo but I foolishly left my cane at home and had to buy a new one halfway through the day.
So we wandered on, and I got such a good feeling about wonderful Waterloo - I finally saw it as my son sees it - accessible, filled with easy transit connections, charming shops and restaurants, pleasant people, pretty sights. At least until my hip started giving out.
Today, I have a puppy who has spent the weekend in a kennel and returns expecting fun fun fun and a body that wants sleep sleep sleep, preferably lying flat without a young pup slobbering all over me. Perhaps I can persuade him for later in the day...Meanwhile, I dragged myself out for a walk before the expected rain starts.  Chutney the poodle kept looking back at me, waiting for me to speed up to my usual pace....but it was all I could do to put one leg ahead of the other. And now, typing seems beyond me.
I keep reading about these people who are desperate for CCSVI treatment who have fewer symptoms than I do. I don't understand the urgency.  Sure, life is grim sometimes, like today, but rest and self-care often improves things and I feel somewhat better. I'd still rather wait and see what comes of the research. All of it, including the research into other areas...

November 19, 2010

Mouse Cortex Array Tomography Journey

This gives me pause, for wonder, for thought, for admiration. How complex the brain of a mouse. How marvellous. And how inscrutable. I can't help but wonder at the work of neurologists and neuroscientists who try to plumb and understand these depths.
I read about people fearing that we will soon have implants that read our thoughts and act on them - it seems impossible, with so many different connections and pathways to analyze, that anyone can design such a system for more than one person - it would have to be so finely tuned.
We still don't understand the effect of antidepressants or the impact of the meds we take for our MS, and sometimes it just seems unreasonable that we shouldn't understand these things, until you see something like this, and realize it's a bit like understanding the universe, or the effect of atoms and nanoparticles and black holes and iron deposits and inflammation and anger and love and chocolate.
It's astonishing that we have come so far. A credit to that complex, intense thing, our brain.

November 11, 2010

It's Walking (and fundraising) time

I can walk and carry a bone, too!
The ever cute puppy Chutney and I are setting a goal to make it through the MS Walk next spring. It's May 1st in Ottawa, and if I organize myself to move out East, that will be my last month in the Capital for awhile.
Last year I couldn't walk the 5 km. Last year I could barely stand for the event - I participated as a volunteer and then collapsed for two weeks. Since then, though, I've made a commitment to myself to exercise regularly - daily. I've worked my way through the Wii Fit and the Wii EA Active and Active more and am eagerly waiting for the EA Active 2.  The puppy, a tiny toy poodle, requires regular walking to forestall house destruction and keep him understanding who is boss.  So twice a day we head out for a walk - sometimes long, like in the mornings when I have energy or short, like in the afternoons when I do not. We're gradually building endurance, the two of us.
I'm doing the fundraising part of the walk because I know how much we need the support the MS Society gives those with MS and their families.  I've been honoured to be on their Board this past year, and have seen how hard everyone works, how they do whatever they can to help those that need it, how they take cuts in everything to ensure there's enough money for research and client services. They're an amazing group.
I've also seen people much farther along the MS pathway than I am.  It's heartbreaking.  That said, these folks are fun and lively and good company and generally speaking, astonishingly positive. But life in a wheelchair just can't be as much fun as they make it seem.
So, I'm putting out an ask, as they say in executive speak these days -
1. I'd love it if you would join my team of walkers (things are much more fun in bunches), and 2. if you can't do that, I'd love it if you would sponsor me. It would really help me work toward my goal of being able to walk the 5 km - and maybe after that, the Camino.
Every little bit helps. You can sponsor me online at:

Thanks so much!

November 9, 2010

The global view

I've always prided myself on my ability to scan information and grasp the big picture - like a hawk circling on high, I always seemed to be able to see patterns and goals and obstacles clearly.
This just isn't working any more for me.
It's come on slowly, sneakily.  First, I've lost the ability to read medical studies and grasp them without several go-overs. Now I find it harder and harder to see patterns in Scrabble or to figure out spatial problems or see things in a holistic way. Driving becomes a series of small steps, trying to organize my finances slips away.  It's not that I'm becoming senile or anything, I think.  I just seem to have a bit of a traffic snarl in the part of my brain that follows patterns through.
On the good side, I forget stories that I've read almost immediately, so I can reread them again and again. On the bad side, I have 40 packages of spaghetti in my cupboard. I know I should make a list. But that's admitting there's a problem.
I find it frustrating to be losing my analytical ability, my big picture thinking, my sense of global understanding. Of course, maybe I was just fooling myself that I had those abilities, but my degrees say no...
Practically speaking, maybe it means I should concentrate on short stories instead of novels for writing, focus on simpler tasks, do brain training, keep up with the exercise. All I know is that the thought of ever having to manage a workday again seems impossible. How would I keep track of all the things I had to do?
Oh, and also on the positive side, my wobblies are back, so I have the advantage of looking vaguely drunk if I don't concentrate on walking. Saves on actually having to buy the booze!

November 5, 2010

The creeping terror

Ah yes, well, I do like to be dramatic.
So here I've been, feeling vaguely well for the last while, exercising madly, almost able to walk without occasioning some disturbance in my motor core.  But the evil MS doesn't sleep. It's still there, and as soon as I put pressure on myself, it slithers out around the edges and does little things to me, like making my right toe drop just for the heck of it, or making my balance wonky all of a sudden so if I turn about I risk falling, or stopping my brain from chugging along appropriately. My typing degrades.  My ability to make decisions slips ever squidgewards. I make up silly words....

Marc, the infamous Wheelchair Kamikaze, pointed out the slithery dread in his blog today in talking about why there seems to be such a split between neuros and MS patients regarding CCSVI. The thing is, all the stuff they offer us just delays the inevitable.  Our brains remain twitchy, swollen, and the MS continues to kill off the myelin or astrocytes or whatever they are figuring out now, even when we appear fine. I have a good friend who has pointed out several times that we none of us know our fate, and tis true I may be run over by a bus tomorrow - but the difference is, we do know what our future MIGHT be, and it causes fretfulness. We would prefer a cure, thanks.

Every time I feel my body slipping, I can feel that dread.  I can usually compartmentalize it, promise myself that I will worry about it tomorrow, so needn't do so today, but when I head to bed and notice that, despite the medication I am on that used to work to stop my leg spasms, they have returned - well, it's scary.

Or when I go to an event and see people with MS much further along than I am - it's hard not to put myself in that wheelchair, imagining how I might cope, wondering how they find the strength to do it.

Then I shake myself and tell myself that really this just means I should squeeze joy out of whatever fit days I have left, and find extra joy in wherever I need.  It's true, but it's not always easy. Pollyanna-ishness is tiring.

It makes me want to punch things.