Mad Sow traveling West

I've decided to take on a bit of a spirit quest, traveling to the Southwest US, to see the canyons, the rocks, the skies, the wildness, while I still can. I've started a blog for my travels: http://madsowwest.blogspot.com/
Think of it as the ultimate MS walk...Most of it being done sitting, true, but with the hope I can walk about to see all of those wonderful National Parks while walking is still possible.
Of course, I may be walking fine next year, it's true.  If so, bonus.
If not, at least I'll have this adventure to think about...
Come travel along with me....

In praise of Wii Fit Plus

There are some wonderful technologies available that help me cope with my everyday degradation with MS. I like Dragon Naturally Speaking if I can't type, for example.

But the Wii fit stuff - both this program and the other fitness videos - well, they are a good help for me generally.

I like to exercise within my capabilities, but it's so hard to estimate these with MS. I can set out on a walk, feeling fine, only to realize I have planned badly and ended up far from home, unable to walk without pain. I haul my sorry hide back, step by painful step, afraid of the time when that won't be possible.

My legs are completely numb. My feet feel nothing today, and I am numb all the way to my hips. Exercise can be dangerous in this state - it's easy to get myself into a position where I can do myself damage. I'm not sure where my legs are in space, or how I am balanced. But I need to move, or lose my senses completely, to say nothing of my muscle strength.

The Wii fit gives me feedback for every exercise. While I can't FEEL where I am in space, the little mark on the yellow circles tells me how to hold my body to get the best stretch, to balance effectively. The more I can focus on keeping myself in the yellow area, the better my core strength gets, the better I hold myself, the safer I am with regard to my life.

I am always amazed at how much better I feel even with a very little bit of exercise and stretching. The Wi Fit isn't a difficult workout, really, though after an hour of it, you'll feel it. I mix it up with the Fitness Coach one, and Just Dance. I still try walking although that is not working out very well of late. I SHOULD go biking or exercise biking - there's a gym across the street that remains untouched by me, lazy as I am.

But there's always that fear of doing myself an injury. It takes me such a long time to get back from injuries now....

The Wii Fit, though, fills me with confidence, allows me to focus my workout to match my energy, and tells me all the time how well I am doing. The feedback is invaluable, the coaching helpful. I highly recommend it.

CCSVI and the terrible temptations

Ah, CCSVI. The solution to MS, the advertising-ready "Liberation procedure", the legions of fanatic followers racing all over the planet for treatment.

Sounds suspiciously like the stem cell tourists of 6 months ago....

I really no longer know what to think about CCSVI. Initially, I thought it sounded sensible, like an explanation for the initial start of MS. Why wouldn't it be reasonable that iron deposits from stenosis led to inflammation led to MS?

But I'm a scientist at heart - degrees in epidemiology, etc. And the study by Zamboni left me scratching my head. I wanted more info. I wanted a bigger study. I wanted double blind stuff. And I wanted to see the results after more than a few months. MS, unpredictable disease that it is, can look good for a while no matter what one does, or doesn't do, about it.

And I knew from my work in health care that we just didn't have the resources here in Canada to take it on. We don't have enough trained technologists to run the MRI machines, or radiologists to analyze the results. Heavens, we don't even have the right MRI machines, or enough of them.

I met with some of the local advocates for CCSVI here, who were banging the drum for research to be done here, now, treatment to be done here, now, and the MS Society needs to be pistol whipped for not changing all research funding over to this, now.

It was unreasonable, and childish, and overwhelmingly selfish. Look, I'm not going to push someone with cancer out of the MRI tube just so I can have it. Most of my family died of cancer - and it was horrible - and I could never say that my existence, trying as it often is, is worse than what they suffered.

What stunned me was that some of these people were the same ones who were abusing the docs for not doing stem cell treatments on them, now, right now, not six months previous.

Has it occurred to any of these folks that there are others in need? Or that there are good reasons not to rush into treatment?

I suggested that advocacy regarding increasing the numbers of MRI machines and technicians and radiologists might be a good place to start, and that perhaps by partnering with the Cancer society or the ALS society or the Alzheimer's society, we might have a stronger voice.

But no. We want it all for US, only us. Sharing might mean waiting.

And then we complain about being guinea pigs.

What the hell do we want?

Occasionally, I want a cure, too. And I get tempted to cash in my savings and go for CCSVI treatment, too. But what if I do, use up all my money, and it doesn't help - I live in greater poverty....

For a balanced review from the MS Society http://www.msanswers.ca/

For a webcast: MS Society: April 7th

I'm exercising doc, honest!

Brain Fitness Software Improves Cognitive Function in Multiple Sclerosis Patients Submitted by Denise Reynolds RD on 2010, March 18 - 14:53 All about: Brain & Nervous System 3Share Cognitive dysfunction is a common, often scary, symptom of Multiple Sclerosis. Cognitive evaluation techniques and neurorehabilitation studies have been used to greatly improve the dysfunction. A new brain fitness software by CogniFit Inc. May help improve cognitive function and skills of multiple sclerosis patients. Multiple Sclerosis (MS) is a chronic inflammatory disease that causes lesions in the brain and nervous system. It is reported that about 50% of people with MS admit to experiencing cognitive problems, such as the ability to pay attention, learn and remember information, solve problems, and use language to express ideas. Mood disorders and depression are also common which can exacerbate the cognition process. Some of the specific cognitive deficits observed in people with MS are: • Memory Dysfunction. This is the most commonly reported cognitive dysfunction in MS and occurs in 20 to 44% of people with MS. The type of memory deficit most often reported is free recall of recently learned material. Free recall is the ability to get to a memory instantly. • Verbal fluency is affected in some people with MS whereas verbal comprehension appears undamaged. Verbal fluency deficits usually take the form of slowed free recall of words that describe concepts and less often words that name objects. • Cognitive Fatigue. On average, people with MS tire more quickly during psychological tests. Patients appear to lose the ability to hold attention for a long period of time. • Impaired Planning Ability. One study reported that 40% of people with MS are less able to plan things than healthy controls. The independent study, published in the journal NeuroRehabilitation, found that CogniFit Personal Coach brain training software resulted in a significant improvement in 10 fundamental cognitive skills. Memory skill showed the greatest improvement, with a general increase of 21%. Visual working memory and verbal-auditory working memory improved by 20%. Other skills that showed improvement included naming speed, speed of object recall, focused attention, visuo-motor attention, and visual spatial working memory. Patients with MS can also use other techniques to help cope with cognitive dysfunction and memory loss: • Write everything down. Keep a diary, organizer, or notebook handy to make lists. Keep one calendar for all appointments and reminders of special days or tasks. • Organize the environment so things remain in familiar places, such as a fixed spot for car keys. Encourage all members of the household to do the same. • With communication, ask people to keep directions and instructions simple. Carry on conversations in a quiet place to minimize distractions and maintain eye contact. Repeat information to ensure it was heard correctly. • Keep the mind fit by doing puzzles, problem-solving games, etc.

an irritant

I've been thinking. One of the things about being an independent person is that you think you can do everything yourself, and you wander about, trying on your own, when really, having an advocate with you would be a much wiser thing.

Going to see the neurologist, for example.

I sat there at my last appointment, watching the doc lose interest in me as my disease just isn't quite exciting enough for him. I watched his face change as he changed his view of me from "potentially interesting client" to "over 50 woman who has whined for years about aches and pains and they probably aren't due to MS". I watched as his face changed from engaged to absent.

This happens a lot with this MS thing. I don't know what I am expecting - perhaps that someone might tell me why , if my disease is so minor, I am almost completely numb stem to stern, why my legs muscles spasm up and down without reason, why walking is so painful when it really shouldn't be. Or why on days like today I have trouble thinking and tend to drag my mental floss through brain plaque with no effect.

It's frustrating as hell.

And yeah, I know I'm not as sick as some, but I've gone from hours in the gym to not being able to walk more than a km. I've gone from full-time high stress employment to barely able to manage volunteer activities. My life has been destroyed over the past two years - not being negative, and stuff still remains that is good - but I mean, really.

So as I sat there and he told me my disease was merely an irritant to me, (see salt in wound...), I didn't speak up. I am always wary of pissing off my care providers. I know docs turn against the complainers.

But if I'd had an advocate with me, perhaps they would have grabbed the collar of my healthy neuro, and asked him the questions. Perhaps they might have demanded more. Not that there is much anyone can do. But perhaps I would feel a bit less tossed aside like limp lettuce.

I got my return visit letter the other day. The neuro doesn't feel I need to be seen again for another year. Surprising, the anger I felt getting that letter. Nothing like feeling unwell and being told that is unimportant to anyone.

Now that's an irritant.

Please play again...

It’s roll up the rim to win time at the local coffee shop (Tim Horton's) , so of course I had to step in and try my luck at the prizes. Often, in a desperate attempt to win a swanky new TV or a car, I’ve become caffeine addicted at this time, trying larger and larger cups so that I can better my odds of winning a big prize. I’ve won a few donuts, a couple of coffees, the occasional bagel.

Today when I stopped in, I was reeling - smiling from the sunny day, unexpectedly wonderful in early March, and shaken from my visit to the new MS clinic. I’d gone, my heart in my mouth, worried about what they would tell me about my illness. Had it advanced? Was I doomed to life no more exciting? Would I be expecting to slide into a wheelchair anytime soon?

Of course, they couldn’t tell me that, as life with MS is too unpredictable, but what they did tell me was world changing in its impact. The new doc thought that I probably didn’t have MS my whole past 25 years. He thought my disease was really quite benign. And that it would most likely be “an irritant, more than anything else”.

Okay, this was initially hard to take as I sat there, in pain, unable to see clearly, legs uncomfortable and sore, cane leaning against the wall (I need it for walks longer than several blocks). An Irritant? I’d say! My whole life has changed since I was diagnosed - I’ve had to leave work, sleep all the time, lost my feeling...and had leg spasms of the extreme sort.

But then, a slight glimmer of light eased in through my newly acquired Buddha-esque calm. He wasn’t saying I didn’t have MS, he wasn’t offering me an escape, but what he offered me was the first explanation I’d had of how serious this really was, FOR ME. I’d never had any feedback about this before. I thanked him, and wandered off towards my next appointment in a bit of a daze.

And then I stopped for coffee.

I chowed down on the bagel I wish I’d had for breakfast, instead of having to get up at the crack of dawn to catch the bus. I sipped my coffee and listened to the chatter around me.

And then I rolled up the rim.

It read, “Please play again”

And I thought, yes. I will.

Like the coffee, we all have the chance to win or lose with this promotion, this world. We still get the coffee, whether we win or lose, which was what we wanted in the first place. And we all have the chance to play again. For me, this sang in my heart, and I almost burst into tears in the shop - tears of gladness, because this time I didn’t win the prize that I didn’t want. This time, I was told I was free, to play again.

I’m still smiling.