Jedi Mind Tricks? Or Placebo Effect?

Our brains are the most complex living machine on the planet. They receive coordinated feedback from all the senses in order to determine what is going on around the body. Sometimes they cope well, but other times, they’re pretty screwed up. Our brains are easily fooled, mostly when the feedback from all the senses is not coordinated.

You’ve probably heard of phantom limb syndrome, a really interesting phenomena that occurs after a limb is amputated. The affected person feels pain in the missing limb. Well, actually, it’s the brain telling the person that there’s pain in the affected limb. No amount of telling yourself there’s no limb, hence no pain, will change your feeling of pain. (In his book Phantoms of the Brain, Dr. Ramashandran describes a simple technique to relieve this common problem for amputees)
You’ve probably heard of false memory syndrome as well. Maybe someone has told you a story about when you were a kid that you don’t recall, but the more the story is told to you, the better you can remember it – even if it never happened. It explains the dearth of “I was abused by a Satanic ritual club” stories in the 80s.
People are biased. They see information and will interpret it based on their pre-existing views. “If we believe something about the world, we are more likely to passively accept as truth any information that confirms our beliefs, and actively dismiss information that doesn’t. This is known as “motivated reasoning.” Whether or not the consistent information is accurate, we might accept it as fact, as confirmation of our beliefs. This makes us more confident in said beliefs, and even less likely to entertain facts that contradict them.” (Joe Keohane, How Facts Backfire –Boston Globe, online edition, June, 2010) Why else would a mountain of scientific evidence and admissions of falsifying evidence still not cause people to change their minds about the vaccine/autism connection?

These are just a few of the many ways our minds can play tricks on us. Not all tricks are bad; some are pretty cool, actually (especially those visual illusion ones, you know, is it a vase or two people?). And we have an enormous capacity to learn. Those two things combine to allow us to deal with any number of difficult situations, physical or mental.

In the case of phantom limb syndrome, Dr. Ramashandran had patients sit with the intact limb facing a mirror so it appeared the patient had two intact limbs. Just seeing a “normal” appearing limb and feeling an unpainful limb where they knew there shouldn’t be one because of the amputation was enough to lessen or remove the pain from the phantom limb. The patients knew they still had a missing limb, and they knew that what they saw was a mirror image of their intact limb, yet their brain saw two intact, healthy limbs. Nifty, eh? So the patients had a relatively easy way to relieve a common and painful condition, just by fooling their brains.

There was an episode of MASH a number of years ago that left a big impression on me. In this episode, the medical unit was very low on painkillers for soldiers recovering after surgery. They were awaiting fresh supplies, but in the meantime, they had to ration what little they had and come up with a creative way of dealing with what was very real pain for the patients. The doctors had a meeting and came up with the idea of using a placebo. They would tell the recovering patients that they were trying a new painkiller medication, but it was so powerful that it could only be given in small doses. They were actually administering sugar pills, a placebo. It worked for most of the patients. I realize that this was a TV show but it demonstrated what has long been known about placebos. We can use them to fool our brains.

A placebo effect is an action unanticipated by theory or known scientific data. It is a well-documented and expected part of scientific research. They are many factors involved in the effectiveness of a placebo. The relationship between the patient and the caregiver and the patient’s expectancies of the effectiveness of the treatment are two of the more important ones. In university I recall a paper I wrote about the effects of LSD on human behaviour. People who had “bad” trips on LSD were anxious about their reaction to the drug before they took it or they didn’t know they were being given the drug. People who had “good” trips, had a different outlook before they took the drug. They were looking forward to the mind altering experience and expected it to be a pleasant one. This demonstrated to me (and others), that a person’s perception of what might happen was very important for the drug to be effective in a positive way. If perception was positive, so was the experience. If the perception was negative, so was the experience.

All of this to say that perception and attitude are two of the biggest determining factors in a placebo effect and in how someone will deal with what happens to them in life. You’ve heard the term “think positive”. You’ve met people whose mindset is one of positivity. They’re the ones who find the silver lining in every cloud, the ones who make lemonade when life hands them lemons. The ones who get on our nerves. (And yes, I am usually one of those people – but not always)
The positive ones trust the people they surround themselves with – because they surround themselves with only people they can trust. Like doctors or caregivers. Or spouses. You get the idea. They have a good relationship with their health care professional and they have a positive attitude. They are perhaps more likely to follow health care advice in general and do so with a smile on their face. They are compliant with medication and look at side effects as a minor inconvenience or perhaps a sign that the meds are working. They get better, or live longer, or seem happier than the patients with negative attitudes.

Remember all the hoopla around the book, The Secret? Positive thinking was all it was about. It was Norman Vincent Peale but without all the God stuff. Norman Vincent Peal was a little ahead of his time. He had described cognitive behavioural therapy (albeit on a religious level) long before the therapy was developed. CBT is highly effective for people motivated to change their way of thinking and their behaviour. By changing your thought processes, you can change your behaviour. Think positive! Sounds simple doesn’t it? It’s not. It’s a lot of hard work, but it can be done. One simple example: someone compliments you on what you are wearing. Do you smile and say Thank you? Or do you frown and say This old thing? The first response is the one that gives you a lift because someone noticed that new sweater and it gives the complimenter a lift when you acknowledge it. You have just exchanged gifts. The second response is a put down to the complimenter, suggesting their taste isn’t all that great and you have made them feel bad by implying it. See if that person ever compliments you again.

Let’s go back to the placebo effect. Surround someone with lots of people and outings for them to go to where they have been limited before because of their illness. They’re moving around, talking and engaging with people, they’re the centre of attention for a while, they’re the focus of a bunch of people fundraising for their “treatment” that the bad ole government won’t pay for. Have them watch videos on Youtube about others who’ve had the same treatment and see how well they are now. Now send them to a foreign country, give them a treatment and tell them it might “liberate” them, where nothing else has worked well before.

Many of these folks have been isolated because of their illness or their attitude about their illness. They are not active because of their illness or their attitude. A bunch of anecdotes showing them that this treatment will work increases their expectations that it will work. And so it appears to work. This is what the doctors mean by placebo effect. As you can see there are a number of things happening, from expectations, to simple want, to bias.

I spoke with a health care provider last year and she told me a neurologist she once spoke with told her he estimated 25% of his MS patients in wheelchairs, didn’t need to be in them. Their attitude is what kept them in the chairs. “I have MS. My life is over. Woe is me.” That’s what I mean by attitude.

I’m not sure if this post helps you understand the placebo effect and why some drugs or treatments can appear to work. I found an enormous amount of really interesting stuff on the brain and how it’s fooled, on the placebo effect in general, and why it is expected to occur as part of scientific studies. I could have written for a couple of more days about the topic, but instead, I’ll suggest you type How does your mind play tricks on you? into Google and do a search.

S.

Barn Door's Open

In the late 50s a Greek doctor began treating patients who had peptic ulcers with antibiotics. But it wasn't until the early 80s that an Australian pair of researchers began their studies of Helicobacter pylori, a bacteria that appeared to cause ulcers. It took 15 years, but by 1997, the Centers for Disease Control in Atlanta (and other academic and medical institutions) were spreading the word about the link between the bacteria and ulcers. The use of antibiotics soon became a standard treatment for ulcers.

So, here we have an idea in the 1950s, unproven to work, or, at the very least, do no harm. For a number of reasons, the Greek doctor did not or was unable to conduct accepted scientific studies. So the idea languished for 25 years until the Australians began their research. And without the research that backed up the idea, the medical community would not get on board.

Now, in the 21st century we have a new idea about multiple sclerosis, CCSVI. And the uproar this idea has caused is unnecessary if folks would stop to think about it for a minute. It is an idea, unproven to work, or, at the very least, do no harm. Yes, it's a very interesting idea. It may have merit. It may add to our collective knowledge of multiple sclerosis, but without scientifically based research, it is not a treatment.

One misconception about diagnosing CCSVI is that it's a simple thing to do. It's not. It requires an ultrasound technician trained specifically to detect 5 factors in determining whether or not someone has the condition. The process takes an hour and a half and at least 2 of those 5 factors must be present for diagnosis. It's not like getting an ultrasound of your baby when you're pregnant.

The early numbers from a survey of 500 people in the US, half of whom have MS, half that don't, show that at most, 63% of the MS folks have CCSVI, and 25% of the non-MS folks have it. We cannot say that CCSVI causes MS unless 100% of MS patients have CCSVI, that CCSVI preceded the onset of MS symptoms, and a host of other conditions are met, not to mention, that those without MS who have CCSVI do develop MS.

Some more interesting stuff is coming out of the American Academy of Neurology meetings going on in Toronto this week. Nearly 50% of those treated in Dr. Zamboni's initial group of 65 patients have had to have the "liberation procedure" repeated. Many of those initial patients were on disease modifying drugs prior to the procedure. The initial trial was not blinded, there was no control group, and the sample size was small.

I have objected to people jumping the gun on this possible treatment for all of those reasons (and more, if truth be told). And even Dr. Zamboni is urging caution to MS patients, telling them to wait until the treatment is thoroughly tested. Kinda late now, Doctor, with people spending thousands of dollars traveling to countries where they can be scanned and have the procedure done.

S.

Check out Science Based Medicine. Steve Gorski has an excellent article on the Greek doctor I mention above. And it's a cool site.

A Rant

The most recent findings related to the whole Zamboni theory come from the USA. While I don't have the exact number of participants in this study at my fingertips (a quick search on Google will turn up the study I'm sure), up to 63% of MS patients tested were found to have the vein occlusion Dr. Zamboni described. Many supporters of the vascular theory are now proclaiming victory saying that this proves Zamboni's case. It doesn't. It adds weight to it, but falls far short of proof of anything.

This study also revealed that up to 25% of non MS participants had the same vein occlusions. That's the part that I found interesting. 25%! These people will now have to be followed (or at least should be) to see if they develop MS as a result of their occlusions.

The two populations must be examined to determine the differences between them and why one group has MS and the other doesn't.

The reality is that both Zamboni's study and the follow up American study add to the whole puzzle that is MS. But they neither prove nor disprove anything.

Did you know that the medical MS field has known about Zamboni and his theory for a couple of years? If it was such a great idea why didn't they jump on board earlier? The simple reason is that Zamboni's research isn't enough. Other people have to replicate his findings.

Trevis Gleason is a blogger for whom I have a great deal of respect. He is much more eloquent than I and much more diplomatic. On a post a couple of weeks ago, I responded with my opinion about Zamboni. Another poster didn't like what I had to say about Zamboni's theory and research and rather than fight on someone else's blog, I'm going to state my case on MY blog.

I said that Zamboni's research was sloppy. To be fair, it was more the presentation of his research that I found sloppy. I had more questions after the airing of the W5 episode he was featured on than I could find answers for. How many participants did he screen for the venal occlusion before he settled on 65? Did he have any control subjects? How many required a second operation to treat the occlusions? Did he do animal studies first? Those are just a few of the questions I had.

I said that Zamboni was unethical in treating his wife. My critic said Zamboni didn't treat his wife, that a colleague did. If Zamboni included his wife in the study, whoever physically treated the woman is irrelevant. She was under Zamboni's treatment and therefore was treated by him. That is unethical. At least, in Canada and the United States it is unethical to treat a family member.

As you can probably tell, I'm still hot under the collar about all this. Why? False hope. I have encountered more people in the past couple of months who are talking about the "cure" for MS. They don't realize this is not a cure. It is an experimental treatment at best, and a waste of money and time (for those willing to spend their savings on travel to a foreign country and an operation) at worst.

Yes, I believe research into Zamboni's theory should continue. But as I've told a number of folks, don't put all your eggs in this one basket. It will be years before we know if this is the cure.

Years ago, it was theorized that MS was caused by Epstein Barr virus, the virus that causes mononucleosis, the kissing disease. Up to 95% of the entire world's population has had exposure to this virus and would test positive for it if given the blood test. Measles affects 30-40 million people a year and many more milliion have been vaccinated or have had the disease and would test positive for it. Measles has also been a suspect in the pathogenesis of MS. My point is that there are more likely suspects than the vascular theory.

And please stop believing that neurologists and Big Pharma are conspiring to keep us from finding a cure. That's just not happening.

S.

The Truth is Out There

Finally. The truth is getting out there. And it will continue to be revealed. Too bad my fellow members of the media failed to do their jobs in the first place and present all the evidence.

I direct your attention to two articles recently published that discuss all of my previous concerns about Dr. Zamboni's Liberation treatment for MS.

Article one.

Article two.

I spoke with a woman last weekend who held out hope for this treatment. When I explained to her that the evidence to support Dr. Zamboni was not there and that there still remained too many unanswered questions for people to be jumping on his bandwagon, she was greatly disappointed. I explained to her, as well, that even if this treatment actually worked, she would not get any better as far as her MS went. It just would not progress. (She is already greatly dependent on a wheelchair)

I asked her if she was a member of the MS Society, had she signed up for any e-mail lists to get up to date and reliable information about MS? No, she told me. Why not? She didn't really give me a good answer. A person with MS for 20 years not asking for information from the MS Society? Where did she get information? From the internet and from people who "cared" about her who heard about different things she should look into.

I am so frustrated, I am almost at a loss for words. Can you say "denial"? What does it take for people to open their eyes and use their minds for themselves? When will they realize that they alone are responsible for their health and they have to research for themselves what they are ingesting or submitting to?

Arrgh. OK, here's an example. A well meaning person years ago told me that I should try Noni Noni juice. So I checked it out. It's an interesting fruit found in the Pacific with a good bit of Vitamin C, though not as much as oranges. That's about all it's got, besides an apparently nasty smell. Claims of its medicinal uses ranged from treating ADHD to menstrual cramps and immune deficiency. Immune deficiency! MSers don't have immune deficiencies, we have overactive immune systems. Do I want to take something that might stimulate my immune system? Nope. My point is that I looked at this juice from both sides. There was no medical literature to support any claims of it being of benefit to me and if I want Vitamin C I'll have an orange. It's cheaper. So I made an informed decision about whether or not to use it.

We do this all the time when we get prescriptions from our docs. We are told why we should take a drug and what might happen if we don't and then we ask about side effects. We then have both sides to determine whether or not we should use the drug.

The other thing that is getting to me about this whole Zamboni affair, are the conspiracy theories that are popping up everywhere. "The docs and researchers are in the pockets of Big Pharma" is the mantra of these folk. "The docs and researchers don't want to look at anything that might put them out of business" is another line I hear. Bull feathers!! Any doc or researcher worth his salt will look at any idea that has merit and ask questions about how it works, and why it could or couldn't be of use.

I was wondering why CTV had not interviewed neuros who had opposing views to Zamboni, as that would have been the ethical journalistic approach. Apparently they did! But they didn't air those bits, which is just as unethical as not asking for opposing views. From this point on I'm afraid that I cannot trust the reporting of CTV on this or any other matter. (My personal boycott of CTV's program W5 will have little impact on them, I'm sure.) To be honest, if I hear a story that makes me think there's more to it than is being broadcast, I will research it. There is little I take at face value and I'm critical of the bigger news machines, especially when they omit information or distort facts. What else have they not told us? What else have they distorted?

As a member of the media for 25 years I had always joking said, "Don't trust the media". In other words, look it up for yourself. Get all sides of a story. Then decide.

Observation + Imagination = Eureka!

Picture credit.

I recently re-discovered a cool website: Improbable Research. The authors are responsible for the Ig Nobel Awards, given to people in various fields for research that first makes you laugh and then think. One fella, J. Trinkaus has made hundreds of observations and written them up for various journals. Two of his "studies" stood out for me.

The first:
' “Compliance with Parking for Handicapped: An Informal Look,” J. Trinkaus, Perceptual and Motor Skills, vol. 58, no. 1, February 1984, p. 114.

Observed the compliance with handicapped parking regulations at a suburban neighborhood shopping center.... 30 citings of convenience were taken... Findings show that in the absence of police enforcement, general observance of parking restrictions... was normally practiced only when convenient.'

That didn't surprise me, really. I don't think things have changed much in 25 years. But it reminds me of the card someone once showed me that they leave on cars parked in those spots without the proper permit displayed:

Your handicap must be stupidity.

The second study:
' “An Informal Look at Use of Bakery Department Tongs and Tissues,” J. Trinkaus, Perceptual and Motor Skills, vol. 87, no. 3, part 1, December 1998, pp. 801-2.

Of 108 people observed extracting for purchase rolls or pastries from displayed bulk stock in food supermarket bakery departments, about 90% used their hands for item selection and withdrawal rather than the store provided tongs. In stores where tissues were provided instead of tongs, approximately 60% of the 133 people who were observed used their hands.'

That one doesn't really surprise me, either. I don't dare tell that bit of info to any of the germaphobes I know, though I suspect germaphobes generally stay away from those types of food bins because of that. Even though that study was done 12 years ago, I suspect it still holds true.

My personal observations indicate that common courtesy and common sense are not so common, especially when no one is looking.

Somewhere on that website (and my apologies to the author or authors, I couldn't find exactly where) was the equation "imagination = discovery". I would amend that to "observation + imagination = discovery".

We have all come across reports of studies that we deem ridiculous. "The Marshmallow Effect" was one of them. From Wikipedia: "In the 1960s, a group of four-year-olds were given a marshmallow and promised another, only if they could wait 20 minutes before eating the first one. Some children could wait and others could not."

At first glance, and if you have no knowledge of psychology, this study may seem a little silly, but it demonstrated that even at age 4 the kids could be divided into two distinct groups: those who could delay gratification, and those who couldn't. And then, "The researchers then followed the progress of each child into adolescence and demonstrated that those with the ability to wait were better adjusted and more dependable (determined via surveys of their parents and teachers), and scored an average of 210 points higher on the Scholastic Aptitude Test years later." Now we can all understand the benefits of this study for child psychology (including perhaps teaching your child coping skills to deal with frustration). This experiment is also used to help explain some people's inability to save money for a rainy day. It may also help identify those children with behavioural disorders arising from biological causes (like fetal alcohol syndrome) and enable treatment. So it's not as silly as it first seemed.

Another study a while ago (forgive my inability to find it) that seemed to tick off a bunch of MSers concerned the effect of stress on a person's MS. The study showed that stress can cause a flare up of symptoms. Everyone with MS collectively shouted "duh". But even though MSers already "knew" this, there had been no quantifying information about it. By studying stress quantitatively, we now can do something about it. By observing and measuring the effect of stress on the human body, we better understand the body and its coping mechanisms: the hormones and other chemicals released, how they interact, what systems are stimulated, which ones are suppressed. In other words, the researchers can definitively show a physical reaction to a mental process. And that means we may be able to control (or affect) the physical reactions to a degree. I'm not saying we can control our MS. I'm suggesting that by knowing what may happen in a stressful situation may aid us in dealing with it, perhaps reducing the physical reaction.

To sum it all up, by making observations and using our imagination we will make discoveries and understand.

S.

Cognitive Reserve Hypothesis

We all know that neurological disease can lead to cognitive impairment along with possible physical impairment. For many of us with MS, we may have noticed lapses in memory, ability to find the right word (tip of the tongue syndrome), unusual moodiness. Some of these things are part of the aging process, sometimes related to stress and/or hormones, and sometimes they are related to the disease.

How do we hold off these impairments? By the time we realize they exist, it may be too late as damage may have already been done. That's the scary part. However, we also know that the human brain is amazingly plastic and that we continue to learn things as we age, so continued brain stimulation by way of physical and mental exercise may help.

There is a hypothesis called the cognitive reserve hypothesis. It suggests that "enrichment protects against neurocognitive decline secondarily to disease" (from Wikipedia). "Lifetime intellectual enrichment (estimated with education or vocabulary knowledge) lessens the negative impact of brain disease on cognition, such that people with greater enrichment are able to withstand more severe neuropathology before suffering cognitive impairment or dementia." This is from the latest study of this hypothesis.

You can think of it this way. Two people contract a cold. One person is a health nut, eats right, exercises every day, gets the appropriate amount of sleep. The other person is a junk food junkie potato couch. The health nut has a good body reserve to fight off the cold within two days. The junkie, though, has no reserve and suffers for a week. The health nut has an "enrichment" of his health, the junkie doesn't.

The cognitive reserve hypothesis doesn't state that enrichment protects you from cognitive impairment; it simply lessens the negative impact. The two people I mentioned above both caught a cold, but one was impacted less than the other.
Cool, eh? I thought so. And it's related to the current study I'm in, the one about cognitive impairment and brain connectivity. You can bet your boots I'll be watching for more studies on this topic.

Let's face it. We have MS. We know it's neurological and degenerative, affecting physical and cognitive abilities. Some of the damage we have little control over. But there are also some aspects over which we do have control. We can get on a disease modifying treatment as soon as possible. We can eat right, reduce stress, get the proper amount of sleep and rest, stimulate our minds and exercise smart.

I have talked about exercising smart before but will sum it up for new readers or to prod those of you who may have forgotten. Stimulate your mind: do puzzles, but do different ones every day. Mix 'em up. The brain is stimulated by new things. You can do a Sudoku one day, a crossword the next, maybe some logic puzzles the day after, but mix it up. By doing the same ones every day, you become good at those kinds of puzzles, but the brain isn't doing anything new, so doesn't get the same stimulation.

Exercising smart is a pretty easy one. If you go for walks or hikes or whatever and don't have an Ipod or MP3 player, try doing multiplication tables as you exercise, compose a letter in your mind, try to recall a favourite recipe from your childhood. If you have a portable media player, listen to an audiobook, or Spanish lessons, or music that you normally wouldn't listen to. You can download free stuff from the library. Take different routes when you walk or hike. Remember, the point is to give your brain something new to work on. In other words, exercise your mind and body at the same time.

Another way to think of it is like this: your brain looks for patterns, whether it's music or words or what you see. These patterns are ingrained in our brain after years, kind of like the beaten down paths from base to base on a ball field. your brain will take the path of least resistance. If you expose yourself to something new and different, your brain first goes "What?" and then starts to search for familiar patterns. Not finding any, it gets down to the business of processing the information, beginning to lay down a new path. That is stimulation. And it's a good thing.

S.

Cautious Optimism

It's been a week since the announcement of CCSVI -chronic cerebro-spinal venous insufficiency - and sadly, I'm detecting dissension in the ranks. Like many announcements, or press releases for that matter, that declare a "new" treatment/cure/theory about any disease or condition, there are people who jump on the bandwagon and those who disagree vehemently, while most of us sit back and watch the fireworks.

MS Society offices world wide have been inundated with calls from people about this latest development. People want an operation to open their clogged veins. They want x-rays or sonograms of their neck to determine if they have clogged veins. Clinics are probably swamped with calls from folks wondering why this "treatment" isn't being offered yet. And people are angry that some researchers aren't completely on board with Dr. Zamboni's ideas.

If you are one of these angry people, take a breath. Now take another.

OK. Still with me? Dr. Zamboni's "treatment" is experimental. And from what I've been able to glean from a few sources, his research is not quite up to snuff as far as scientific methods go. However, both the MS Society of Canada and the NMSS in the US are taking a serious look at his ideas. His ideas have merit even if his methodology does not. The next step is to have MS researchers propose, design, and execute large, well-designed studies. If Dr. Zamboni's research and results can be replicated, then we can get all excited about a possible treatment or even cure for MS.

One critic of researchers who aren't jumping on the bandwagon used the example of ulcers and how they are now treated versus how they were treated 20 years ago. 20 years ago, it was generally believed that ulcers were the result of stress until helicobacter pylori was discovered to play an enormous role; a role eliminated by antibiotic treatment. But that discovery and its proof was 20 years in the making. The critic was making the point that the established medical community pooh poohed the idea of bacterial infection causing ulcers.

20 years! The researchers who re-discovered (it had actually been identified almost 25 years earlier) the bacteria responsible for up to 80% of ulcers, had to study, investigate, and experiment for 20 years before their treatment was deemed a good one (and effective) by the medical community.

Dr. Zamboni has stressed how he believes that MS is a vascular disease. But it has been proven that MS is a disease of the immune system. There's nothing that says the immune response in MS patients can't be caused by a vascular malformation that causes iron to stay in the brain which in turn prompts an immune response resulting in MS. In fact, we don't know what causes the immune response to begin with. Remember all the hype about Epstein Barr virus? That's why it is so important to conduct research about this theory. Because it is a theory.

A number of people are thinking that they should just give up on their current treatments in the hope that Dr. Zamboni is correct. Think again. It'll be years before we know if his theories are correct. And by staying on your current treatment (if it's working for you), you will be that much further ahead when and if a cure is declared.

Which leads me to my final point about this whole thing. Let's say this experimental treatment does work and stops MS in its tracks. Does that mean that if MS has left you unable to walk that you'll suddenly be walking again? We don't know. MS causes permanent damage to our brains. Damage that we probably cannot undo. So even if we stop MS, we may still be left with deficits and disability. And those deficits may possibly be recovered only through remyelination and/or extensive physiotherapy, if at all. It makes sense for us to stay on the treatments we have right now, to stave off future attacks and severity of those attacks so that when a cure is declared we'll have lost as little ground as possible.

Cautious optimism. That's what I'm feeling about this whole "discovery". It's very exciting to suddenly find a new piece of the puzzle. But remember, it's a piece.

S.

Another Iron in the Fire

Here's the CTV report that aired tonight (November 21).

CCSVI - chronic cerebrospinal venous insufficiency - where to start.....iron is an important building block for our bodies; it's necessary to maintain health, it's vital as a matter of fact. but like anything, too much of a good thing can be bad. There's a condition known as hemochromatosis which results in an accumulation of iron in various organs of the body, leading to pain and eventual death unless treated. A friend of mine has this illness and simply goes once a month to have a pint of blood removed from his arm. We all know about anemia, too little iron in the blood, also fairly easily treated.

But what happens if iron is trapped in a person's brain? It is considered a foreign invader and is attacked. And when our immune systems go on the defensive, their activity is conducive to an inflammatory response. Inflammation results in damage not only to the bad cells, but sometimes the good ones, too, like myelin, which is what MS is. Does the presence of iron assist in breaking down the blood/brain barrier?

Why would we have iron trapped in our brain (actually, iron deposits around cerebral veins)? Perhaps because the veins carrying blood from our brains is blocked from draining properly, and/or perhaps it refluxes (think acid reflux) - goes back a little where it just came from before finally draining.

Now why would the veins be blocked? It may be that some of us are just born that way.

So the next questions concern the chicken and the egg. Did a congenital malformation contribute to or even cause my MS or did my MS possibly cause a malformation? Or is there a gene that expresses both MS and the malformation? Does the presence of different types of malformations determine the type of MS a person has? Is it possible that the malformations are side effects of, or made worse by, MS drugs?

This venous malformation results in a few different things, one of which I find of particular interest: hypoxia. This is basically oxygen deprivation. Besides unconsciousness, another result of hypoxia is fatigue. Oh, boy, can I relate to that.

Dr. Zamboni has discovered CCSVI and made the link with MS. I'm impressed with this guy. His wife has MS and he wants to make her better. He and other researchers are now looking at this new connection of vasculature with MS, so that means more questions, but maybe more answers for those of us with MS.

And Dr. Zamboni has a really cool last name.

S.

Is There a Doctor in House?

Anyone watch "House" the other night? For the first time since the show began, I actually figured out the illness before too long. It had to do with the Hygeine Hypothesis - eating dirt as a kid offers some protection against things like asthma and Crohn's and Colitis...and, I might add, MS.

I've explained this theory before - see Diet of Worms. There are studies under way using helminths(worms) to see if and how they improve certain conditions. And the patient in House was finally given a glass of water to drink with the worms in it. Cool.

Speaking of protection, I went to a clinic this week for my seasonal and H1N1 flu shots. We've had different groups selected each week to go to these public clinics and my group finally came up. But be forewarned. My arm is a still a little sore. The H1N1 vaccine is a little more intense than the regular flu shot. Actually, the shot itself is relatively painless, but the after effect is a little harsher.

Aside from the usual controversy about vaccines in general, there are people who don't think they need a flu shot or shouldn't have one because of MS. Wrong. If you have MS, you are still susceptible to the flu, swine or other type. And we all know what a fever can do to those of us with MS, so why wouldn't you get a flu shot? Unless you're allergic to the components of the vaccine, get your shots. Apparently it takes 10 days or so for the immunity to kick in....so here's hoping I don't run into any sick people for the next week.

S.

Did It Leave a Mark?

When I was 16, I was in a drama class. We wrote a play and were in rehearsals one afternoon after school, when I was kicked in the head. It was completely accidental, during a fight scene, but it was a pretty hard foot to my noggin. I brushed myself off while the kicker kept apologizing and we carried on with the rehearsal. 20 minutes later, I was feeling not so good, seeing those black spots before my eyes getting larger and larger until I was momentarily blind. I thought I was on the verge of passing out so sat down and my vision quickly returned.

I really didn't give it a second thought as there was no headache and my vision stayed fine for the rest of the day. The next morning, after getting up I went in to see my mother. I started to faint and the next thing I knew, she and Dad were helping me into my bed. My stomach was beginning to display unpleasant behaviour at that point and my folks determined I was to stay home from school for the day. I hadn't told them about the kick to the head; either it didn't occur to me to tell them or I forgot. And I didn't put the kick together with the fainting, vision loss, or sick stomach. We chalked it up to the fact that I was burning the candle at both ends.

In fact, until this week, I simply remembered the events as they occurred. Then I was watching a report on TV about football players, concussions, and the higher incidence of certain neurologic conditions in players with many concussions. The light went on over my head and I suddenly realized I had probably suffered a concussion myself, albeit 30 years ago.

There's a piece of my medical history I had completely ignored (of course, I han't realized it was part of my medical history) but one that I will talk to the clinic about next week. Any injury to our brain forever alters it to a degree. That's not to say that any brain injury cannot be overcome. Everything we eat, breathe, or do to and with our bodies affects the brain and can alter it. So can even simple concussions.

There is some evidence to suggest that a traumatic brain injury may partly contribute to the development of MS, but the current information isn't sufficient to say one causes the other. And most recently, dysfunctional brain blood flow and/or drainage may also contribute to MS. Maybe my apparent concussion 30 years ago did permanent damage to my brain, opening the door to those dreaded viruses we hear about that may be linked to MS. It was almost a year after the kick to the head that I came down with mono - caused by the Epstein Barr Virus. Sadly, I got the kissing disease, but not from kissing someone.

I called my mom last night to tell her about the kick to the head; it was news to her, of course. I also wonder, from time to time, about my classmate and fellow actor, JT. Does he remember kicking me in the head?

S.

Is My Brain Connected?

Picture is from Wikipedia.

This is the latest study I am involved in:

"Brain Connectivity and Executive Functioning in MS (MRI Scanning Assessment)

This study may help us identify differences in the brain structure of persons with Multiple Sclerosis (MS) who have problems on tests that require speeded thinking and processing of information.

In this study we will be using Magnetic Resonance Imaging to give us a picture of a person’s brain and a way of analyzing these pictures, called diffusion tensor imaging (DTI) that shows us the connections between different brain regions. We are using DTI to see if we can identify whether people with MS who have problems on tests that require speeded thinking and processing of information have disruption of specific connections. Another imaging method, called functional MRI (fMRI) will also be used to see if brain regions with these connections are working together. This will help us to understand whether the tests of speeded thinking, DTI and fMRI are good ways to investigate these problems for people with MS who have concerns about their thinking. To do this we will complete MRI scans on about 6 persons with MS who have problems on these test and 6 who do not. DTI and fMRI scans are experimental MRI methods that are not used in regular clinical care of people with MS.

Because MS is a disease that can affect the brain at any time, and because people can get better on some tests with practice, we also want to look at whether there are changes on MRI scan and changes in test performance over time. To do this we will ask the people who are selected for the MRI part of the study to repeat some of the tests and the MRI six times, at one month intervals."

So basically, they give me a bunch of speed and processing tests (including the dreaded PASAT or Piss test -as I call it) then put me in an MRI machine and take pictures to check out the brain connections I have or don't have, as the case may be. Two weeks ago, I went in for the tests and last Saturday I had the first of six scheduled MRIs. 5 more to go.

In the past two months I have given 4 brief talks about the importance of the MS Society to me. I was asked to speak to employees of different government departments who are involved in the current United Way campaign. As the MS Society of Canada is a member agency of the United Way, it's important to talk to folks about what the MS Society does so people can know more about where their donated dollars go. Response has been really good so far, and the folks I've talked to will go back to their co-workers armed with more information about MS, encouraging them to donate to the United Way, or to the MS Society directly. I really enjoy these short talks because I can demonstrate to these people what I'm doing for the cause. Then I ask them to do their part. When they hear that I volunteer for these MRIs or neuro-psychological tests, they are impressed. I only hope they're impressed enough to give some of their hard earned dollars.

As an unexpected bonus, I have been able to do some networking, which I hope leads to a paying gig one of these days.

S.

Treatment for PPMS

Our brains continuously repair themselves, no differently than other organ systems. We have a number of defense mechanisms built in to protect those systems. For example, our skin is the first barrier to pathogens. We have an immune system to fight off intruders if they get by the skin. Mucosal layers inside our bodies are also defenders, as are the hair in our noses or our eyelashes. The skin cells, hair, and mucous die off, are shed, and grow back. We have different levels of defense built in to our body; redundant systems, you might say. If one system doesn't work, the next line of defense kicks in, and so on.

Myelin is one of the defense mechanisms built in to protect the central nervous system (and you thought it was just a way to transmit signals more efficiently). When myelin is destroyed, it can and usually does, grow back. The process of demyelination and remyelination is the basis of relapsing remitting multiple sclerosis. But you already knew that. Repeated demyelination leads to fewer successful remyelinations.

The blood brain barrier is another one of the body's defence mechanism. It normally prevents pathogens and T cells(immune cells) from entering the CNS. But an infection or virus can compromise its ability. When the body recovers from the infection, the blood brain barrier can regain its integrity and the pathogens or T cells are trapped on the wrong side where they can wreak their havoc. The T cells detect myelin as foreign matter and set out to destroy it. That triggers the inflammatory process which stimulates other immune cells which causes more inflammation which stimulates other immune cells...and so on.

Demyelination is what causes the signals to be transmitted improperly or not at all. It leaves the neuron exposed to pathogens or danger and leaves it vulnerable to destruction. This is what causes permanent disability. In the relapsing remitting form of MS, demyelination results in an inflammatory reaction. In the primary progressive form of MS there is no remyelination and very little inflammation, so the neurons are left unprotected. The current drugs on the market and those in the pipeline focus on the inflammatory process by attempting to reduce it. And that's the basic reason we have little in the way of a treatment for PPMS.

From the National Multiple Sclerosis Society website:
" * The immune-modulating drugs currently used to treat relapsing forms of MS do not seem to be as effective in PPMS.
* In PPMS, there is a lack of easily-identifiable outcomes to measure in clinical trials. In the trials for the approved disease-modifying therapies (the interferon beta medications, glatiramer acetate, natalizumab, and mitoxantrone) investigators looked at outcomes such as number of relapses and number of new lesions (also called plaques) seen on magnetic resonance imaging (MRI) to determine if people who received the treatment had lower numbers than those who received a placebo (non-active substance). In other words, the investigators looked at things they could easily count over the course of a two-three year trial. Because people with PPMS don’t experience relapses or the same kind of inflammation in the central nervous system, there are fewer events that can be counted.
* The disease progression that occurs in PPMS can be quite slow — which means that a trial would have to last many years to determine if a treatment slowed or halted that progression."

There are a few drug trials going on for treatment of PPMS, but the main focus surrounds repair and protection. By the time a person is diagnosed with PPMS, the damage has already been done. So how do we stop MS at this stage and how do we repair the damage? The best treatment for PPMS at this point would appear to be autologous stem cell transplant.

I've written about Autologous Stem Cell Transplant before, but here's a recap:
First, bone marrow is removed from the MS patient. The patient then undergoes chemotherapy to completely anhilate their own immune system. Then transplant the bone marrow back into the patient. In essence, the patient's immune system is shut off, then turned back on again, much like rebooting a computer. There is a current study under way in Ottawa, lead by Dr. Mark Freedman. His purpose in beginning that study was to observe the genesis of MS. So far the study is a failure as no one has shown any signs or symptoms of MS since being transplanted. By rebooting the immune system, MS was destroyed. Cool. But this is still a study that is going on and will for some time. And the cost is quite high.

After we've stopped the disease in its track, then repair of the damage has to begin. There are a number of researchers looking at improving the repair process, but these are still in the animal studies stage. Researchers are also investigating methods of repairing the blood brain barrier to promote myelin repair.

What can we do now to promote the repair process? Eat fat. Well, that's a little simplistic, but myelin really is fatty tissue so eat foods with the healthy fats in them. From Wikipedia:
"The Canadian Government has recognized the importance of DHA omega-3 and permits the following biological role claim for DHA: 'DHA, an omega-3 fatty acid, supports the normal development of the brain, eyes and nerves'....As the importance of omega-3 fatty acids to health has received increasing awareness, the number of food products enriched in omega-3 fatty acids has increased. Many companies add fish oil or flax oil into their final product to enrich it in omega-3 fatty acids. Some animal products, such as milk and eggs, can be naturally enriched for omega-3 fatty acids by feeding the animals a diet that is rich in omega-3 fatty acids."

There are few studies of chemotherapy and rituximab on PPMS patients but for the reasons noted above, it will be a while before results, if any, are seen. In the meantime, keep shouting from the rooftops for people to donate money for the MS cause. In my most recent presentations to community groups about why donating to MS is a good idea, I stress the need for support of people with disabling MS. I stress that if I have to, I can take a needle once a week for the rest of my life if necessary, but I don't want to watch my friends and colleagues becoming bedridden.

S.

CAMs

Complementary medicines are those supplements or treatments that are used in addition to traditional medicines. Alternative medicines are used in place of traditional medicines.

Vitamin D is one of the few supplements that has some science to back it up. Early studies indicate its benefit, but the main question about it has to do with dosing amounts. There are some studies currently underway checking out the safety of mega doses. Right now, 2000 IUs is the recommended dose.

Special diet is another complementary treatment, but there are few studies and little if no long term follow up to determine their effectiveness. What is currently recommended is the standard low fat, high fibre type diet that also promotes heart health.

Steroid treatment is something most of us are familiar with and many of us continue to undergo with any flare-ups. Current studies are underway to determine differences, if any, between IV and oral steroid treatments. So even a current treatment used for years is still being investigated.

LDN is being touted as a wonder drug for a number of diseases, including MS. It may reduce cell death in oligodendrocytes, which are responsible for maintaining myelin. It appears to reduce spasticity, fatigue and depression. Side effects include liver toxicity, sleep disturbance, and GI problems. I've only come across two specific studies for LDN in relapsing remitting MS with mixed results. They were short term studies and involved only 100 people in total. According to Wikipedia, LDN is prescribed for off label use for MS to about 50,000 people in the US. It's hard to say at this point whether it will be a good drug for MS or not.

Marijuana is a drug that may be eaten, smoked, taken in pill from or a spray form. Putting aside the legality of it for a moment, side effects include decreased cognitive skills, dependency, and psychiatric symptoms. The benefits point to reduction in pain and spasticity. It is also only available legally after much paperwork with doctors and governments. Illegally, the cost may outweigh any benefit.

Before taking anything that is complimentary or alternative, discuss it first with your doctor. Some "natural" supplements can interact with medications. Ask yourself some questions, too: What claims are made by the product? Who recommended it? What are their qualifications? Who's tried it? How does it work? What kind of testing has been done on it? What are the medical risks? Side effects?

Remember, claims that a substance is natural mean nothing. Arsenic is a natural product, too, but we all know what ingestion of it will do. With few exceptions, everything we need nutritionally we can get from our food. The problem is that most of us don't eat what we should and too much of what we shouldn't. For example, you can increase your intake of omega 3s by eating more fish than beef. Choose in-season fruit and vegetables when possible, using canned or frozen when out of season. Increase your fibre intake by adding bran to your cereal or baked goods.

We all have well meaning friends who tell us about the latest health claim of a particular product. I thank them for the information with a promise to research it. Once I have I can go back to them and say "I checked out Product X and I'm afraid that not enough study has been done on it for me to take at this time" and that opens the door for me to tell them why.

I'm not saying that there isn't a place for CAMs in the treatment of MS, there must be a way for these compounds to be tested for safety and usefulness before we take them.

Next up, treatment outlook for PPMS.

S.

More Drugs

Cladribine is a drug used to treat hairy cell leukemia. For treatment of cancer it is given by IV, but for MS, it is given orally. It is currently awaiting approval for use in MS. It is long lasting, but side effects include a reduction in white blood cells and infections like shingles. There are also some questions about cancer developing as a result of using the drug.

Fingolimod is currently in phase 3 of clinical trials and is also showing promising results. It, too, is an oral medication, but its side effects include risk of infections, heart rate and blood pressure increases, and lung and skin cancers.

Dimethyl fumarate, which I'm sure will get a sexier name at some point, has been used to treat psoriasis. It has also been used as a mold inhibitor in consumer products, though now is being banned for that use. It is showing promise as a treatment for MS because of its neuro-protective properties and its ability to inhibit pro-inflammatory cytokines (cytokines are a type of chemical messenger - reduce the inflammatory cytokines and you potentially have a treatment for MS). This drug is an oral medication currently in Phase 3 trials. Side effects included abdominal pain, flushing. and headache.

Laquinimod is currently in Phase 3 trials and has immunomodulatory effects and may offer some neuroprotection. Like the interferons, liver enzymes must be watched closely, and the drug also shows promise for treating other autoimmune diseases. And it's an oral med.

Daclizumab is a drug commonly used as an anti rejection drug for transplant patients. It increases natural killer cells and is well tolerated. There is the possible increase in infections as a side effect and it is given in injection form once a month. It is currently in Phase 3 trials.

Rituximab has been used for treatment of leukemia as an antibody against B cells. It is given by IV every six months. Side effects include viral infections and reactivation of viral infections (in particular, the JC virus which leads to PML) and cardiac arrest. Needless to say, if you take this stuff, the docs will watch you like a hawk. In Phase 2 studies, completed last year this drug has shown promise.

Alemtuzumab is another cancer therapy with a profound effect on MS. The Phase 2 trials have been completed. Side effects include low platelets and thyroid problems, so again, the docs would keep a close eye on you if you're on this drug.

There are a great many more drugs and treatments in the pipeline, but the ones I've mentioned are the ones closest to consumer use.

All of the above drugs are currently being studied and are 1-5 years away from coming on the market for treatment of relapsing remitting MS. However, these drugs have pretty serious side effects. They all show promise and studies of these drugs and the DMDs all show that earlier treatment of MS is going to lengthen the time to disability. Ideally, someone will come up with a cure. Do it now, would ya'?

S.

PS: Next up, I'll be telling you about some other treatments including the alternative ones.

Drugs in My Pocket

Even though we have a great number of drugs currently in different phases of clinical trials, our best offense against MS is still the 4 current DMDs (disease modifying drugs). Over the past decade, researchers and the drug companies have continued with Phase 4 observational studies and from the information gathered they have made the drugs easier to take.

For many of us on Avonex, the side effects are well tolerated with the addition of acetominaphen or ibuprofen. When 8 hour arthritis Tylenol came on the market, we finally got a full night's sleep on the evening of our shot. Biogen Idec has also come up with pre-filled syringes and smaller needles to make shot taking a little less daunting. There have also been some changes in Rebif to make things easier.

The DMDs are creating a "new" natural history of MS; time to progression to disability is increased by 4 years. For example, someone with MS might take 15 years to progress to disabled without DMDs, but someone with MS taking one of the drugs would take 19 years.

The medical community have recently (in the past 8 years) modified diagnostic criteria for MS so we are now seeing earlier diagnosis of MS. Before these changes, it could take 6-8 years for a positive diagnosis. Now it's 6-8 months. That means that people with MS can be treated earlier with one of the DMDs, as early as the first clinically isolated syndrome (CIS). We now have the ability to modify the course of MS by treatment of CIS.

What we have come to discover is that these DMDs don't work for all MS patients. So now the researchers are focusing on what is different between patients and trying to come up with ways to identify those that will do well on the DMDs and those who won't. I'm one of the patients participating in one of these studies.

For those who don't tolerate the DMDs, there are a great number of drugs in the pipeline. One was mentioned by a commenter on my last post, teriflunomide. This drug is showing promise so far and if added to a regime of an interferon (Avonex, Betaseron, or Rebif), shows even greater results. It should be noted that the drug has been used to treat rheumatoid arthritis since 1998 and does have some serious side effects. There are a number of Phase 3 trials going on right now.

Tysabri is already on the market as a treatment for MS. This, like teriflunomide, is an immunosuppresant. The very feature that makes it good for MS, can also leave you succeptable to PML, an infection caused by the JC virus, a common virus that usually lays dormant in our system. If our immune system becomes compromised or suppressed, the JC virus may become active and can result in death. It's extremely rare and now that it has come to the attention of the medical community, patients are screened even more carefully before being given the drug and must be registered for monitoring.

In my next post, I'll give you some more drugs currently being studied.

S.

Clinical Trials

I attended an information session last night about new and emerging trends in MS research. Wow. Lots of information and I took two pages of notes. I'll get to the medications being developed in the next couple of days, but I felt a review of the process of drug development is warranted. It's a good reminder of why it takes so long to get drugs into people.

From the time a compound is discovered it takes 10-12 years for that drug to get on the market. After a compound is deemed to be of interest, it is tested on animals. Then it enters the Phase 1 trial. The first stage is to test the drug on 20-80 healthy subjects to determine if it is safe. Once it has been determined that it is safe and the side effects are manageable, then it goes to a Phase 2 trial where it is tested on 100-300 "sick" subjects, those who are affected by the disease the drug is supposed to treat. These studies are often two years duration. It is at this stage where, if a drug fails to work, the trial will be halted. If the drug shows some benefit, then it proceeds to the Phase 3 stage.

The Phase 3 stage involves 500-1000 subjects and it is at this stage that there are randomized multi-centre trials. Again, this stage may take a couple of years, as not all subjects are enrolled at the same time (not all subjects are diagnosed with a specific disease at the same time). In my case, I was enrolled in the CHAMPS Avonex study one year after the enrollment began. The CHAMPS study was supposed to be 3 years duration but was halted after two because of outstanding positive results; subjects were automatically given the drug at that point as it would have been unethical to continue giving some patients the placebo.

During the Phase 3 stage, drug makers will apply to the appropriate health authority (FDA, Health Canada) for approval to market the drug. Data analysis continues through all stages of course and at this point the drug enters Phase 4, post market surveillance or observational study. It involves safety surveillance and ongoing support of the drug. It is at this point that long term adverse effects may be detected or drug interactions reported.

According to Wikipedia, about 1000 drugs are developed before one makes it to the clinical trial stage. And finding people to take part in the trials is equally as daunting. Strict criteria must be met for most trials. Again, in the CHAMPS study I took part in, it was required that subjects have had only one symptomatic demyelinating event and an MRI that showed at least 3 lesions.

So there's your lesson on clinical trials. Next post I'll get into what is actually being developed these days.

S.

Matters Gray and White

Generally speaking we consider the gray matter of our brain to be the "thinking" part and the white matter the stuff that connects the gray matter. So one would think that since MS is mostly a disease of white matter, our cognitive functioning would remain untouched except for speed of processing information. But it doesn't.

We now know that the white matter of the brain functions more than as a connector. The simple fact that people with MS exhibit cognitive impairment supports this hypothesis. How MS affects our cognition depends on a number of factors; severity of MS, general health (nutrition and physical fitness), and attitude all affect our cognition. Even without MS, general health and attitude will affect our cognition. If we are eating poorly and not exercising, the brain can't operate at its optimal standard. Throw in something like MS and deterioration is bound to occur.

How do we improve our cognitive functioning in light of assured decline because of MS? Interestingly enough, the brain is already trying to compensate for any deficits by making other connections. This is evidenced by studies showing activation of different brain areas in MS patients compared to healthy control subjects when given certain tasks. This shows neuronal plasticity - the ability of the brain to make new connections in order to do previously known tasks. So our brains are already giving us a head start, so to speak, on the road to recovery.

In order to assist that recovery, or at least to help maintain or develop cognitive skills, we have to eat right, exercise, and get a proper amount of sleep. No kidding, right? I've been shouting that from the rooftops for years.

It also means developing a positive attitude despite the crap that is going on around you. I know poop happens. Take the time needed to deal with it, have a meltdown if that helps, but then move on.

In light of all this, I will remind you of a study I participated in a few years ago, the results of which I posted on this blog in late 2007. It showed evidence of brain atrophy and slower response time for MSers versus a control group. I am now going to participate in another study looking at brain connectivity in executive functioning in MS patients. Executive functioning is what is considered to be involved in handling new situations outside the purview of "automatic" responses; planning and decision making are executive functions for example. I'm waiting for more info from the study coordinator about the hypothesis, but next week I'll go in for a round of tests and an MRI, to be repeated every month for 6 months. I'll keep you updated of course. An hopefully gain a little more insight into what MS is doing to us and our gray and white matter.

S.

The title of this post is also the title of a book by a neurologist in the states about different cases he's had. I enjoyed it, even if he spelled gray with an E.

H2O H2O, Everywhere

Our bodies are composed of a number of elements and combinations of elements, like water. For some reason, humans are fascinated by water from an early age. Considering that we spend the first nine months of our life floating in water may have something to do with it. We are also born with an instinct to hold our breath if under water. Comes in handy. But as kids, we play in it, on it, and around it with absolute dedication to discovering what it does when we hit it, mix dirt in it, or jump in it. Even as adults, we still love to play in and on water, but as adults, we have a healthy fear of it.

Have you ever dreamed about water? I have recurring dreams where I'm swimming with the ease of a dolphin, surfacing every few minutes, then diving deeper into the ocean. I'm swimming as quickly as a dolphin would and don't seem to be concerned with breathing. These are the most wonderful, satisfying dreams I have. I wake up rested and energized from these dreams, though sadly, I don't have them often enough.

I learned to swim when I was about 5 or 6, taking a Red Cross class at the local pool. I recall the pool's location somewhere on the Vancouver waterfront, or at least on a beach near the waterfront. And I still recall the smell of the air on those chilly mornings before the fog had cleared or the rain had let up. Every once in a while, the air in Halifax has the same smell, bringing me back 40 years.

I'm not a strong swimmer, having not kept up the lessons or the practice. But I can keep myself afloat for a while, treading water or bobbing, sometimes just floating on my back. There's something soothing about quietly paddling in the water or even just being submerged to my neck in the shallow end of the pool.

For the majority of my life I have lived next to an ocean or a large body of water, or a major river system. I have lived on the east and west coasts of this country, in the middle with the Great Lakes, or aside the St. Lawrence Seaway, St. John or Miramichi rivers. Even when I lived in South Korea, I was right next to the Han River, dividing the capital city of Seoul. Both of my parents were born on an island, surrounded by the cold Atlantic ocean, waters warmed only by the month of August by the jet stream.

The year I was 18 we spent 2 weeks in Hawaii on the way back from living in Korea. I was recovering from a bout of mono and was pretty useless during the hot days, only going to the beach after supper to play in the waves for a couple of hours. My dad would come to the beach with me while I swam. One evening, I was rinsing off the salt water at the communal showers with a couple of surfers, discussing the water conditions. They were complaining about how cold the water was! I laughed and said I though it was like taking a bath. They took in the paleness of my skin and asked me where I was from. When I told them Nova Scotia, they said Ahh....the Atlantic Ocean, right?

Like all children, I was interested with water. I've already written about jumping into the deep end of a pool when I was three and my mother's eye was off me for a nanosecond - no mean feat on my part - and what sweet release that was! When I was little, my Dad got me watching the Jacques Cousteau documentaries with him. So many creatures that lived in the seas that we knew (and still know) so little of! In fact, when I began university, it was with the intention of becoming a marine biologist. I still absorb wildlife documentaries at every opportunity, but I especially enjoy marine topics. Who knew there were undersea volcanoes and mountains? Creatures so weird, they could only come from the imagination of Tim Burton?

I can't imagine not living near a major body of water, not smelling the ocean or the stinky seaweed in summer washed ashore after a storm, examining the pebbles worn smooth by millions of years of tumbling in the sisyphean surf, being amused by the sight of gull footprints on the beach and patterns left by raindrops on dry sand.

Two atoms of hydrogen, one of oxygen, and you have water. Pretty simple equation, isn't it? Apply a magnetic field to a human body and the hydrogen protons align with the direction of the field and we can take pictures of the insides of our bodies. And detect abnormalities. Like MS. Cool....

S.

Take Two Proteins and Call Me in the Morning

People who know me, or those of you who have followed this blog long enough (and I thank you), know that I am easily amused and excited. I have maintained for almost 30 years that it is the little things in life that mean the most and that is why I can't recall the last time I was bored. I find something amazing every day in the world around me.

That being said, I am hard to impress when it comes to MS. I rarely get excited about news releases from drug companies or vitamin manufacturers about their latest "possible" treatments for MS. I don't write a lot about the stuff I read daily about "new" advances in treatments or cures. If I had a dollar for every time someone said to me, "I thought there was a cure for that" or "I thought that the drugs you take keep it at bay", I'd be a very rich woman. I call myself a skeptical optimist.

We are inundated with news releases or hyperbolic headlines screaming that we're "this close" to a cure for MS...or cancer...or social anxiety for that matter. I have a tendency to ignore most of what comes at me and do my own research about what is currently being studied, preferring to check out the websites of the researchers and/or their academic institutions.

I like to describe MS as a simple disease masquerading as a complex one. On the larger scale, MS appears to involve the central nervous and immune systems; it appears to involve the endocrine system (as evidenced by hormonal and metabolic fluctuations affecting MS symptoms); it appears to be affected by genes and environment. All these systems interact with and are affected by each other. So at first glance, MS appears to be rather complex.

But break it down and you get the simple explanation. Myelin gets destroyed and the body reacts to that. Simple. I like simple.

I have said before that I believe the answer to MS will be a simple one. Some silly dime store vitamin supplement. Or hookworms (read previous posts about parasites for more info on that). Or a food additive that creates protection for myelin without destroying other parts of our bodies.

So when I read about a study with a relatively "simple" hypothesis and results with a relatively "simple" solution, I get excited. Here's the story.

Take two normal run of the mill proteins, stick em together, sprinkle them on the immune cells, then give those cells to sick animals, and they get better. Kind of like, take two aspirin and call me in the morning.

OK, so I realize that things aren't as simple as I like to make them out to be. It can't be a simple process to fuse the two proteins together. But I think you know what I mean when I say "simple".

The point of all this rambling? This study is one I can get excited about.

S.

Hypothesis: I'm Full Of It

We don't really understand how the interferons work. We have some pretty good ideas, but they don't work for everyone. One hypothesis is that they work by increasing production of a protein that facilitates the death of melin-reactive immune cells (the cells that destroy myelin) and prevents inflammation. If those cells aren't destroyed, you get MS. Simple, eh?

How do you test the hypothesis? You check the blood of people on the interferons for that protein. Presence of that protein is a good thing. Lack of it means the interferons probably aren't working for you.

Whose blood you might ask? Mine for one. Starting next month, I'll be enrolled in another study through the MS clinic in Halifax and have my blood tested at regular intervals to see if the protein is present. My hypothesis, based on the researcher's, is that I'm full of it.

The whole point of this particular study is to be able to predict, based on blood studies, who will benefit from receiving interferons (Betaseron, Avonex). As it stands now, docs are encouraging everyone to get on a treatment as soon as possible. The sooner you are on treatment, the better your long term outcome: fewer attacks means less permanent damage and less disability. For some people, that means trying one drug after another, which takes precious time and may possibly result in more attacks and greater disability. So if we know right off the bat that the interferons won't work for you because you lack a certain protein or ability to make that protein, the docs can move onto another non-interferon treatment sooner.

Scientific progress is slow, I know. But it is plodding along.

S.