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.

Zzzzzzzzzzzzzzzzzzzzzzzzzzzz

What is "MS" tired? It is not the usual sleepiness you feel after lunch. It's not the dragging feeling the morning after the night before. It's the "get me to a bed before I drop to the floor in the grocery store" kind of feeling. It's giving your shopping cart full of groceries to a stock person to put away because you just can't make it through the checkout. It's going to a baby shower and leaving after an hour because you can't hold a plate with cake on it for one minute more. It's not going to movies because you're afraid the low lights will allow you to drift off during the trailers and not wake up until the movie's over. It's getting home from work and going straight to bed without eating supper because you just don't have the strength to put food in your mouth (and then waking up famished and grumpy because of low blood sugar).

MS fatigue can hit at any time. Middle of the morning or afternoon....after a full night's sleep, it can hit two hours after you get up. What you have to do is manage it.

For the past couple of years, I have napped on weekends. Saturday and Sunday afternoons would find me curled up in bed instead of outside playing. I would fight the fatigue all week long, drinking cup of coffee after cup of coffee. I don't think the caffeine kept me awake so much as my bladder. Most days after work, I'd go home and put my feet up for a rest, sometimes having a short nap. But since I was laid off I've been napping like Rip Van Winkle.

At first, I thought I was just catching up on sleep, as I hadn't had any length of time off since last year. I decided to take the rest of the summer off and hiked, biked, and napped. By September I was ready for a more regular routine but come lunch time every day I was zonked. I could have slept in til 10 but by noon I had to go back to bed. Very strange. A month of that and I was getting a little concerned. I wondered if I was depressed, as constant sleeping is a symptom of that; I realized that once I had a nap I was fine, so, nope, it wasn't depression. I concluded it was that dreaded MS fatigue.

I've had short bouts with that fatigue over the years; a day or two of rest and I seemed to be recharged. Even sometimes at work, simply laying (lie-ing?) on the floor for 10 minutes would be enough to get me through my day. This time, though, rest didn't seem to be helping in the long term. I initially felt that if I were going to have any physical manifestations of stress from the lay off, I'd see them about 6 weeks after the fact. And that appears to be what has happened. For all of September and October I can count on one hand the days I didn't have a nap.

There are a number of things you can do to maximize your energy levels if you are subject to MS fatigue. I won't get into them here, as people more learned than I have detailed them on their blogs or web sites. I'm trying to do all the things they talk about, eating right, regular exercise, blah blah blah. But I was still exhausted at one o'clock in the afternoon. And once I start working again, I doubt they'll let me go home for a 2-2.5 hour nap.

I stopped in at the MS clinic a couple of weeks ago to talk to Mike, one of the clinic nurses, about meds for fatigue. Long story short, I've got a prescription for amantadine. That doesn't mean that I can't still have the occasional nap, but now I have the choice.

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.

Busy Week

The past several days have gone by like a blur. A friend of my family passed away over a week ago and my mom has been dealing with our friend's home and contents, leaving my dad without transportation to and from skating (Dad skates at least 3-4 times a week) so I was helping out with that. Of course there was the funeral to attend as well. I used to house and cat sit for Norma and her husband John when they took trips. Norma was a really neat lady, kind and gentle, and will be greatly missed.

Of course, the clean-up has continued on the Little Sackville River after the oil spill. I went out Saturday morning with one of the other members, Sebastien, to collect certain plants that are useful in this sort of thing. Sadly, it's so late in the year, that most aquatic plants he wanted were long since gone. We ended up gathering two garbage bags full of cattails, though, so the search wasn't wasted. The rest of the morning was spent meeting up with other members, running errands for supplies, and ferrying said members to the spill site. I couldn't stay for the actual "work" (I timed that well, didn't I?), but they spent a couple of hours setting up stakes and burlap as filter material. I hope to get to the site again tomorrow to see how well our rainfall and mild temps today dispersed the clumping oil. It was clumping because of the cold.

Here's a picture from 3 weeks ago on the morning of our last River Ranger group. My location was in the shade and after spending 20 minutes in the shade, in and out of the river to get rocks to find bugs, I was frozen and stood in the sunshine to try and thaw out. My face was frozen to the point where I was beginning to lisp. And I had two more groups to work with at that point! You can just make out my breath coming out as a cloud:



The Wookie and I also attended the AGM of the MS Society Atlantic Division on Saturday afternoon. One of the Board members' term is finished and we wanted to say thanks; he's also a founding member of our Bike Tour Team , The Cycle Delics. And there was a presentation by Dr. John Fisk, who is leading the end MS Regional Research and Training Centre for Atlantic Canada. 5 of these centres were set up in May of this year as part of the endMS campaign in Canada. I had wanted to meet Dr. Fisk as he's conducting one of the studies I'm currently enrolled in. He spoke about a number of activities that have occurred since the centre began including the exciting work by some of the med students. One of the foci of this campaign is to attract new people to the field of MS research. There are scholarships and grants being set up to retain some of these talented people and as they have a chance to do first hand work with current top notch researchers, it should help. The picture below is the first group of endMS summer students in Halifax this year:



After the AGM, we headed back to Lower Sackville to a pool hall where a fund raiser was being held for the Sackville Rivers Association. I wanted to just make an appearance, bid on some silent auction items and go home. Which is exactly what we did. I'll find out tomorrow if we won any of the items we bid on.

And I have managed to get in 4-6 kilometre walks almost every morning. Now, it may seem like I'm kind of pushing myself a little too hard, and you're probably right....but get off my back. The past week was an exception to my usually more laid back schedule. I'll behave better this week. I promise.

S.

Vandals are Idiots

Sunday morning an oil leak of 600-700 litres was discovered in Lower Sackville. Sadly, it was an act of vandalism; the vandals cut a line from an oil tank and the oil spilled out, into the ground, and into storm drains which led to the Little Sackville River. So the Sackville Rivers Association along with government agencies have been trying to clean up the mess. Today I went to the spill site and the site where the oil was flushed into the river to check on the health of the bugs. Just below the storm drain outflow into the river, most of the bugs and invertebrates I rounded up were dead. Just above the outflow, I checked the bug life and it was good: varied and moving quickly.

A little further downstream, I checked for bug life again and all I found alive were two snails(!). As I walked along the side of the river, the rocks below my feet would sink into the mud and oil would come to the surface. the booms and other absorbing materials that were put out are doing their job, but not enough.

The smell of the oil in the water is enough to keep fish from swimming upstream to spawn. The oil kills life in the river from fish to invertebrates. It also kills any fish eggs already laid.

The owner of the oil tank may have been the target of the vandals, but the victims include the entire community who use the Sackville Rivers system for recreation, and at least two hundred volunteers who have put in countless hours to improve, protect, and teach about this watershed.

I hope the idiots who did this are caught and prosecuted to the fullest extent of the law.

S.

Waving at Trains

Remember as a kid, if you were walking by railroad tracks and a train came by, you'd wave at the engineer and make a motion of pulling on a cord? Then he'd wave back and blow the train's horn? Yeah. Good times, eh? I still do it. And it's been happening more frequently of late as my walks have taken me close to railroad tracks. I still get a bit of a rush when I hear a train and look eagerly to the engine and try to catch the engineer's eye. Then I wave like a bloody fool. Depending on the hour, I'll make the pulling motion, too. I don't do it if it's before 9 in the morning as I don't want to unnecessarily wake up the people sleeping in. My reward? Getting a wave and a honk back. I love that! Who doesn't though?

I've been getting job alerts via e-mail about anything having to do with public relations. This morning's included an opening for a train engineer. One of the requirements for this job involved some measure of public relations, which at first had me puzzled. Until I read the full ad. The public relations part of the job was "waving to people". I actually laughed out loud. How great is that?

S.

Winter's Coming

This is part of Papermill Lake, about half a mile from where I live. It's the source of loon calls in the late evening and early morning. You can tell by the slight fog above the lake surface that the water is warmer than the air - one of the first signs of the impending winter.

Another sign is the frost everywhere first thing in the morning:



Yesterday afternoon Walter and I went bug hunting to supply one of the classrooms that hadn't made it out on a field trip. I giggled every time I saw a pile of pebbles moving up the side of the tub. Those are caddisfly larvae, the ones who build themselves mobile homes. Different species build different styles of home, using different materials. This one uses pebbles to construct a half-football shaped home:



Flip it over and you see the larva inside:



A couple of weeks ago I encountered a wasp that was quite dopey from the cold. That's the only way I'd handle this animal:



Pretty soon it'll be too cold for any insects at all, unless I want to go wading into a river and hunt for the aquatic bugs. Which I may have to resort to doing. So if you see some idiot in the depths of winter wading knee deep into a stream with a tub and paintbrush in hand, it's me.

S.

Passing the Torch

For the past several weeks, I've been a facilitator for the River Rangers program offered by the Sackville Rivers Association. The guy who runs the program, Walter Scott, is a retired teacher who goes into classrooms (usually grade 4) and with the teacher gets the kids excited about ecology, biology, and conservation. All the classrooms are given an aquarium which we stock with a few species of fish and the kids and teacher are given instructions on how to care for the fish. Then the kids get to go on a field trip to either the Sackville or Little Sackville River where they have a hands on experience. There are three stations set up. One is a general type "What kind of fish live in the river?" station, where the kids learn about the different species of fish. The second station involves water chemistry where they get to test the pH of the water, and the third station is all about invertebrates; bugs, leeches, and other creatures that inhabit the rivers.

Guess which station I'm facilitating? The kids are given tubs, brushes, and strainers and then we hit the water, collecting the slimiest rocks we can find, putting them in tubs of water, and brushing them clean to get the "bugs". Then we strain the water in the tubs, they're given fresh water for their bugs and they set about identifying them. At the end of the session, we collect all the "bugs" into one communal jar and they can take them back to their classroom to put in the aquarium with their fish.

The kids learn about the importance of bugs in our rivers as fish food, cleaners of detritus, and as markers for pollution. There are mostly larvae and nymphs of stone flies, mayflies, caddis flies and dragonflies, but we quite often get snails and freshwater shrimp and the occasional leech.

Usually all the field trips are done by mid October, but we kept getting tons of rain that resulted in higher than safe levels in the rivers which meant postponing and rescheduling trips. Last Friday we had to cut short the trip already underway because of the cold and windy conditions (plus there's always one kid who slips and falls in the river and is completely soaked through) . Yesterday's trip was a go despite the freezing temperatures, but my face, fingers and toes were numb by the end of it.

The kids are quite funny when it comes to bugs. Most say that they think bugs are cool. Those who don't think that way become converts by the end of it. There are parents who come along as well, as chaperones, of course. Some of them are a little grossed out by the bugs, but usually become converts, too.

At the end of the trip the kids are all taken on a short walk to hear about how they can help keep their environment, and thus the rivers, clean. And hopefully, as they get older, they'll get, or stay, involved with the Sackville Rivers Association.

S.