8.25.2014

New Challenges, or isn't it lovely Fampyra takes away some of my numbness RIGHT now when I need it?

Ah, knees.
Those humble, poorly designed bits of skeletal architecture that support our weight and allow us to move and somehow have kind of adapted to us being upright.
Those multi-part pieces of garbage that give out on us with annoying regularity...

Apparently mine wouldn't get much on the Antiques Road Show. I can hear the announcer now, "Well, there has been some damage, as you can see here, and here, and over there, and here, and that WILL affect their value. In fact, they're not worth as much as you paid for them."
"Oh, they were free? Well, that doesn't change my point...you may want to keep them for sentimental value..."

No thanks. Sentimental value isn't much when the thing you are talking about causes pain and mobility limitations.

For a while I was in denial about my knees. I assumed my leg spasms were due to MS, which they are, but what I didn't realize was that my legs were spasming in response to the screaming pain from severely arthritic knees that wasn't making it to my brain thanks to the MS.

Sortof a win/lose situation.

But then I started taking Fampyra.
Hooray! Sensation is creeping back.
Damn. Sensation is creeping back.

So, whereas before I could leap about with gay abandon as long as my MS would let me, now every movement is accompanied by a chorus of groans and winces.
My knees have awoken.
I am forming new wrinkles to cross out my smile lines.

A sucker for punishment, I trotted off to see the orthopaedic surgeon about a replacement. He looked at my X-rays and asked which one to replace, as both are entirely wrecked. So I'm doing them both, at the same time. I figure my docs oughta get a paper out of this, given the combo of MS and bilateral knee replacement. Can't be that common.

It's a bit of bravado, I've got to admit. I am always best running at the high hurdles. Little ones bore me and I can't get excited about them. But this one is significantly terrifying enough that I am actually going to prepare for it, do my exercises, try to lose weight, etc, etc.

Oh yeah, and take my lifelong wish train trip across the country before I go under the knife. Just in case.


7.09.2014

Blindness revisited, or how MS can spring up and mess with you just when you thought you were coping...


Okay, MS, I've got your number. I know you will make me tired, you'll give me muscle spasms, you'll eat away at my concentration like a deranged rodent. I know some days I'll feel so good people will look at my disabled sticker and mumble and gesture. I'll spring gaily along, overcommitting and overdoing because on good days I am almost manic, trying to crowd in as much as I can.

I know other days kids will offer to help me  as I bend over my rollator. Kids. Of six and seven. And old people will hold open the door for me, offer to carry stuff, fret about me. And I'll spend half the day lying on my couch with the cat kneading me anxiously.

But Cheesus Murphy, as the excellent Kitchener restaurant would say, DON'T TAKE ME F-ing EYES!

It's bad enough about the brain. I spent years and countless thousands educating it and for what? So I can misunderstand simple knitting patterns and never find my glasses? Honestly. If I had that tuition money back I'd spend it travelling the world while I still could, going to Africa and Madagascar and New Zealand and everywhere. Of course, hindsight is 20-20, unlike current sight.

Which brings me to yesterday. I've been having problems seeing for a while now - blurring vision, glasses don't work, etc, etc. I've become used to seeing things with furry edges. I now can no longer read small things without glasses - I'd blame it on age, but it's been a sudden transition, over the past few weeks.

Yesterday, though, I had a recurrence of what sent me to the hospital the first time five years ago - a creeping in of goo from the right side of my head, covering my vision, enclosing me in a swampy impenetrable fog.
Last time, it swept across both eyes, giving me intense claustrophobia. It came, lingered, left. Came back. Sent me to the hospital. Hung around a bit more, left me again.

Last evening, it crept in again, like a migraine aura, oozing in from the upper right corner of my eye, creeping ever so slowly until half my right eye vision was obliterated.

I thought I handled it well. I mentioned it to my companion, quickly, not lingering, in case I was having a stroke and he'd have to spring into action and do something with me. Like a distant foghorn. We continued chatting and working, and I quelled my panic. As with most MS things, there is little that can be done, when it comes right down to it. If I lose my vision, that's it. There's treatment with steroids, which shortens attacks, but really doesn't help with progression. If the bottom drops out of 'er, as they say, it drops out.

It came back, thank heavens and the gods above and all that is good and right in this world.

But it leaves me a little bit more frightened, a little bit more wary, a little bit in dread.
Sometimes I forget I have a progressive disease. I adjust to my current function, think it will always be thus. And then...

And then...

It's fucking terrifying.

6.01.2014

Multiple holes in my head: Fampyra diaries and how do you know if you are crazy?

Do you remember that old elementary school question about "How many holes do you have in your head?" where you had to remember all the openings through which a bean may or may not be pushed?

Well, sometimes, I feel like there are others, deep vacant spaces with echoes. No beans growing there, but a certain lack of certainty, as it were.

Quicksand-y.

I find the cognitive changes in MS the worst, because HOW DO YOU KNOW IF YOU ARE HAVING THEM????

At least when my legs don't work, I can see that, clearly. From the floor, maybe.

I think of the happy demented patient who doesn't know what he or she doesn't know, and then I wonder...hmm. Am I really confused or am I still mentally sharp? Do I just THINK I am mentally sharp when really I am barely able to mouth breathe?

Or, more alarmingly, am I mentally ill or just getting fed up?
It's almost impossible, mes amis, to tell the difference.

See, I'm generally pleasant. I smile at strangers (which leads to some odd situations) and I am kind to waiters and coffee servers and such. I try to be happy and cheerful and useful and sweet.

But every once and awhile I get angry, or fed up, or annoyed. Like most people. Rather less than most people. And when I let that demon out of the bottle, it seems everyone has to take me to task for it. I don't throw things, I don't hurt people. I get angry, at being misled, or not told the truth. I say things, like "This is where I draw the line". Because, y'know, it takes a lot of effort to figure out the truth when your mind is as foggy as mine. So when someone is deliberately misleading, well, I lose my temper. It's true.

And then all it takes is someone to tell me, "I never said that," and I slip into panic land. Maybe they didn't say it. Maybe I just misread it. Maybe I'm losing it. Maybe I need to plan for regular assessments, a nurse in the home to keep me away from sharp things, etc.

So, I took myself back to school, at my advanced years of 55+. I took myself to a creative writing school, a fairly demanding one. My brain gets seriously tired at the end of a writing day. I often can't even speak any more. Fortunately my cat doesn't expect too much in the way of conversation.

And I restarted Fampyra, trading my financial stability for this last kick at the writing can. It DOES make me sharper. I CAN concentrate better. I can walk better, too, managing a 5 km walk and a 3 km MS walk 2 weeks later.

Unfortunately, it makes me react quicker, too. It's like the Fampyra is lighting up my hippocampus, my limbic system, my amygdala, by blocking those potassium channels.

So I lose my temper quicker, too.
Or maybe some things just are annoying?

I just don't know.


5.07.2014

Support me in the Scotiabank Charity Challenge today!

Support me in the Scotiabank Charity Challenge today!



I'm taking Ralph my rollator, some best buddies, and my cheery spirit and heading around Halifax for a 5 km walk to raise funds for MS services and research.  The Bluenose walk is a big event and it should be a lot of fun, but the important things for me are the physical challenge and the desire to raise funds for the excellent services the MS Society provides here in the Atlantic Region.



Wish me luck - 5 km is a big deal for me these days! And if you can sponsor me, that would be great!

10 days til lift-off..

3.08.2014

Running running running, or how MS can act like a bull(y)

I've been hearing about this young lass, Kayla Montgomery, who runs like the wind. She has MS and because of this, as she runs, her body temperature goes up and she has what the docs like to call a "pseudo exacerbation" - her legs lose all sensation and she feels no pain as she pushes herself to the max.

So she can run very very fast, whereas other girls running hear their muscles screaming "no more, no more."

I'm happy for her, I'm glad she's having a good time and fast runs, but I'm a bit afraid for her, too. Our bodies feel pain because they are warning us of potential damage. If she can't feel anything, and loses all ability to stand at the end of her run, is she doing her limbs harm?

I know what I'm talking about. I used to go swimming three times a week. It was wonderful exercise and I found quickly that I could swim 20, 30, 40, 50 lengths of the pool. See, my heart and lungs were okay, and the rest of my body went numb shortly after the tenth lap, so I was in bliss as I swam back and forth and back and forth (and back and forth).

Until I tore my rotator cuff muscle. I've been going through months of physiotherapy and it still isn't better, had cortisone shots and I still can't lift my arm up over my head without pain. I damaged it by overdoing it (I never could swim 50 laps even when I was a KID) and didn't even notice.

Now fortunately, I am numb generally anyways, so the pain in my arm is negligible most of the time. When I feel it, I know it remains damaged. I never know when I will feel it. Sometimes I think it's better and I exercise using it, forgetting that it is still not right, and I end up the next day unable to put my coat on.

So that's why the picture of the bull goring the man...or as mums used to say, "it's all fun and games till someone loses an eye."

I think exercise is fabulous for MS. In fact, I think it is the only true thing that works in MS in terms of delaying progression and keeping able. I'm even attempting self-immolation by trying the Bluenose Marathon in May - a 5 km walk, just me and my Nordic Poles or rollator, followed by the MS walk the weekend afterwards.

I know I'll pay, I'm hoping for the aforesaid numb legs so I can do it without too much agony, but I'm 55. I'm perishing anyway, bits wearing out, stuff falling off.

Kayla's just a young thing. I hope someone is looking out for her, really looking out for her. She's far too young to end up damaged.

2.06.2014

Once more into the fray, my friends...

May seems terribly far away, as I sit here gazing out at piles of snow and the deceptive sun that hides a freezing wind. But it's slipping up on us...
I'm doing the MS walk in Halifax again this year - I usually volunteer to help out with registration and then haul my sad legs around the route as well. Hoping I can still do that this year.

In honour of the walk, and of my father, who knew how to make every day something worth living, I herein record the joke he used to tell that always comes up in my head when I think of my draggy legs...

Harry kissed his wife and went out for his usual foursome of golf one sunny Saturday morning. When he returned, many hours later, he looked awful - sweat streaming off of him, brambles in his hair, muscles spasming as he walked.
He came in and crashed in the first chair he came to, begging his wife for a drink of anything, anything.
"My gosh, Harry! What happened to you? You look exhausted!"
"Oh it was terrible," Harry said, mopping his brow.
"It must've been. What happened?"
Harry took a long sip of water from the glass. "Well, everything started out fine, me and the guys, gorgeous day, though a bit hot, if I was going to complain...and we'd just started off. Had to wait for the first tee - busy as hell out there today."
He gulped more water.
"Then, we got to the second hole, and doesn't Ralph just up and have a heart attack right in the middle of the fairway! Dropped dead right in front of us."
"Oh no! How horrible," his wife said.
"I'll say. The rest of the eighteen holes, it was hit the ball, drag Ralph, hit the ball, drag Ralph..."


I'm looking for sponsors for my walk - if you'd like to sponsor me and Ralph, please go to my personal page for the MS Walk.  I'd really appreciate it!