Interesting discussion:
http://www.sciencebasedmedicine.org/?p=6465
A blog about living with MS. Why Mad Sow? In homage to Denny Crane, on the TV program Boston Legal. Every time he forgot something, he'd point to his head and say "Mad Cow." I refer to my MS, primarily a cognitive thing at present, as my Mad Sow.
August 11, 2010
August 6, 2010
Buff but bummed
Okay, so I've been working out like crazy for a month now. I've earned praise from my automated coaches on Wii Active ("Keep this up and you'll be coaching ME soon!"), I am now familiar with the elliptical downstairs and have managed to get to three bars into the "weight loss" category - I've even developed considerable arm muscle mass and slimmed my legs. My blood sugars rock. My body moves without complaining too much and my balance has improved.
So why oh why am I spending the REST of my days in sleep or sluggish brain death? I should be getting peppier as I go, as I lose weight, gain muscle - but instead I slump and collapse after lunch, sleep for hours, wake for dinner, sleep more.
And worse, despite the muscles, lifting groceries is still so difficult. Doing housework seems beyond me.
I know my body is getting in shape, but something in it isn't getting the memo. Although I can see slight improvements to stamina, I'd expect more after 30-60 minutes of exercise almost every day for weeks.
All I can hope for is that with cooler weather, all this work will show. And nap to extremes now.
So why oh why am I spending the REST of my days in sleep or sluggish brain death? I should be getting peppier as I go, as I lose weight, gain muscle - but instead I slump and collapse after lunch, sleep for hours, wake for dinner, sleep more.
And worse, despite the muscles, lifting groceries is still so difficult. Doing housework seems beyond me.
I know my body is getting in shape, but something in it isn't getting the memo. Although I can see slight improvements to stamina, I'd expect more after 30-60 minutes of exercise almost every day for weeks.
All I can hope for is that with cooler weather, all this work will show. And nap to extremes now.
August 2, 2010
Nocebo, placebo, kissing...we need to know more!
And so it starts. Some studies refuting Zamboni's claims: http://www.news-medical.net/news/20100802/Research-shows-no-link-among-CCSVI-and-development-of-multiple-sclerosis.aspx
Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.
One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc. The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract
We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.
It's enough to make one feel like a hysteric or hypochondriac. But perhaps there is something important here that speaks to the damage our brains have undergone. Perhaps they are "twitchier" due to the irritation MS causes. Perhaps that's why we seem supersensitive, in good ways and bad.
It's hard to know. But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.
Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....
But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS. Perhaps because there's no money in it?
Two small studies, and I'm sure those looking for a conspiracy will note that they were conducted by neurologists, but they are a start of a question around this issue.
Saskatchewan has decided for clinical trials of the venoplasty but I've noticed that guardrails are being placed around their statement as talk progresses. Still, I do hope we get some REAL evaluation of this procedure, not just anecdotal statements of hands feeling warmer or being slightly better for a while. I want longer follow-up, better testing, perhaps MRI changes.
One of the other interesting studies I read lately mentions how people with MS are more likely than those without to react negatively to placebos, to complain about side effects from sugar pills, etc. The "Nocebo" effect, as studied in this meta analysis review. http://msj.sagepub.com/content/16/7/816.abstract
We've always known that the placebo effect has a strong impact on study results; now it seems we react more both to positive and negative stimuli.
It's enough to make one feel like a hysteric or hypochondriac. But perhaps there is something important here that speaks to the damage our brains have undergone. Perhaps they are "twitchier" due to the irritation MS causes. Perhaps that's why we seem supersensitive, in good ways and bad.
It's hard to know. But it does make me suspicious of small studies that purport to find success. And it speaks to the need for larger studies, repetition of results, before we can wave the flag of success.
Another study, mentioned to me by a dear friend, speaks of tongue stimulation to increase the ability to walk. http://www.jsonline.com/features/health/54545577.html
Interesting stuff. Myself, I prefer my tongue stimulation when shared with another. I feel this study gives me the right to explore kissing with as many people as possible (or one as often as possible) as a MS treatment. And I don't care about any placebo effect....
But hey - in all the studies that show success in MS treatment, they also talk about physical therapy and exercise regimes to rebuild muscles. And yet no one seems to look at just exercise as a treatment for MS. Perhaps because there's no money in it?
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