Tuesday, December 29, 2009

Still Here

Greetings one and all. I hope Christmas was a good one for you and the food was plentiful and the annoying relatives minimal. I have been on a self imposed blogging holiday to concentrate on other things, like shopping, baking, parties, and the like.

I also needed to get a little distance from the whole CCSVI thing. Many people have been asking me about that "vein" thing and while doing follow up internet look ups on it (and speaking with MS professionals), I have even more questions of my own. I have spent much time explaining how it is supposed to work and why, and then I spend the same amount of time posing questions that remain to be answered. Most folks I speak with understand once I explain and they also understand why we can't leap into this without further research. More than once though, I have found myself wishing that CTV had spent some time talking to Dr. Freedman (of the Ottawa clinic) before airing that W5 documentary in order to get a more balanced look at what Dr. Zamboni has and has not done in his research. I suppose it's up to people like me to spread the word of cautious optimism.

I have continued to follow comments from people about this discovery and I am amazed at the amount of paranoia and conspiracy theory that abounds. I supposed it's o different than the conspiracy theory that surrounds cancer research. In case you aren't up on these theories, some folks speculate that there will never be a cure for cancer (or MS or whatever) in order to keep all those researchers and doctors and drug companies rolling in the dough received from drug treatment sales.....um, yeah.....

Anyway, I have managed to keep on walking 4-6 kilometres most days so am enjoying the exercise. I am also seriously considering joining the 52 WBC. That's the 52 Weeks of Biking Challenge, where you bike at least 30 minutes every week of the year. Kind of cold this time of year, and slippery at times, but I think for the weeks with nastier weather, I can pull out the mountain bike and stick to off road trails. Of course by April/May, I'm on the bike for a minimum of 30 minutes a day, so that's not a problem. There are hardier souls than I who ride to and from work every day no matter the weather, so I think I can do at least 30 minutes a week.

In the coming days I plan to tell you about the seal that has taken up residence not far from my home, the audio books I can now listen to thanks to a fantastic Christmas gift, courtesy of the Wookie, a job interview in the new year, and some fun stuff like the great lemon loaf I made at Christmas. A tradition I have just begun.

S.

Sunday, December 13, 2009

I'm Still Here

Greetings! Been a little busy with Christmas just around the corner, sending out resumes, etc. and helping to stock the Sackville and Little Sackville Rivers with trout given to the Sackville Rivers Association by the Department of Fisheries. Last week we were given 7 2 year old hand reared trout for our aquarium at the Community centre and I arrived just in time to fish one out of the garbage can and put it in. Then we headed out to make 4 stops and release 2000 fingerlings into the rivers. Way cool.






On the MS front I've spent more time explaining, to those curious enough to ask, the pros and cons of Dr. Zamboni's findings and theory. I stopped in at the clinic last week, too, and the nurses there figure that every clinic in the country lost a week because they were on the phone explaining this vascular theory to every Tom, Dick, and Harry who called. While they understand the media has a job to do, they wish they were a little less quick out of the blocks to report "cures". Or at least explain the pros and cons rather than just the pros. From what I've read, some people were angry that Canadian doctors and researchers aren't jumping on the Zamboni band wagon right away. I'm not sure why CTV did not get opposing viewpoints to this theory before they broadcast the W5 episode. They have interviewed Dr. Freedman of the Ottawa MS Clinic before about his stem cell research and experiments so why not talk to him again. Especially since Dr. Freedman was aware of Zamboni's findings before the program aired. Actually, I had read something very briefly a few months before the broadcast and thought it looked interesting, but there was little buzz about it then so put it at the back of my mind. *Sigh*. As is so often the case with research, more questions than answers arise.

S.

Tuesday, December 1, 2009

Milfoil and Wintergreen



Photo by Alison Fox, University of Florida, Bugwood.org

The water milfoil (from French, milles foille, meaning 1000 leaves) is an invasive aquatic plant found world wide. It can get quite long and tangled and is sometimes found in masses on the surface of ponds or lakes, blocking sunlight from reaching under water plants and choking them out. It can live in pretty extreme water conditions, too, so pollution has little effect on it. Which is, in our case (the Sackville Rivers Association), a good thing. It's a great collector of crappy stuff in waterways.

Sebastien, our resident plant expert, and I went out today to harvest some of this water plant, what little is still alive at this late stage of the fall. At this point I must set the stage. As you know, I've been doing a lot of walking in all temperatures and conditions this fall. Cold, wind, rain, whatever is going on I'm dressed for it, but today, Sebastien asked me, when I picked him up, if I still wanted to go. It was freezing and windy and there were snow flurries. I was dressed for it so said of course. He got his son's chest waders for me to wear and we were off. We didn't have to travel far, only a kilometre or so, and we were on the land of a local lumber company that has set aside a piece of land as a green space. Included in this property is Feely Lake, our destination. We put on the waders (mine were a touch too small in the legs) and we were off. Because the waders didn't allow me to bend my knees farther than, say 20 degrees, I ended up walking like a penguin. For 50 feet along the fence, across a stream that came over my knees, and around the end of the fence I waddled. I also needed help going up inclines.

Anyway, we made it to the lake and started wading along the edge to retrieve the plants. I think we walked 2-300 metres along the shore with the wind and snow flurries around us. There were some obvious beaver signs and the bottom of the lake is rather sandy so there'll be a bunch of leeches for me to check out next summer. Sebastien also said there's a lot of eels there as well. After gathering a bag full of the milfoil, we climbed out of the lake and walked through Acadian forest back to the fence. Along the way, Sebastien pointed out wintergreen (Eastern teaberry) and picked a couple of berries for me to try. They taste like....wintergreen! Of course. Why was I so surprised? Anyway, I also tried the leaf of the plant which is also strongly flavoured - but even more so, and rather bitter. I'm afraid I had to spit the leaf out.

All in all, and despite my waddling, it was a great little trek into an area I'd not visited before. Sebastien will hang onto the plants we collected until (maybe tomorrow) he and other members of the group can get them to areas along the Little Sackville River for river remediation since the oil spill last month. I'm hoping to join them as well at some point...and will remember my camera this time, too.

S.

Friday, November 27, 2009

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.

Thursday, November 26, 2009

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.

Friday, November 20, 2009

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.

Thursday, November 19, 2009

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.

Sunday, November 15, 2009

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.

Tuesday, November 10, 2009

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.

Thursday, November 5, 2009

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.

Tuesday, November 3, 2009

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.

Sunday, November 1, 2009

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.

Tuesday, October 27, 2009

Heart in throat

I have managed to do quite a bit of hiking and walking of late despite the fluctuation in weather and temperatures. Last Saturday for example, I was out traipsing around as it hailed and the temp hovered around the freezing mark. Sunday morning, in the pouring rain and gusting winds, it was almost tropical, warm enough for shorts and t-shirts. This morning, the temp was back to freezing as I hiked the woods around Jack's Lake. It was soggy and mucky as we've had more than our share of rain for the month, but it was a great hike anyway.

On Sunday, with the temperatures so moderate, I thought I might find some insects that were fooled into thinking that it was still summer. Not only did I find bugs buzzing around, but even a tiny salamander. I put it under the microscope only because their little toes are so cute, but then I discovered something I didn't know about the little guys. Their hearts are in their throats! I've had a few close calls over the years that left me feeling like my heart was actually in my throat, but never thought there was a creature who lived like that. I took video of course and as you watch it, look at the little red thing pulsing in its throat. How cool is that?



S.

Saturday, October 17, 2009

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.

Saturday, October 10, 2009

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.

Tuesday, October 6, 2009

Feelings....Whoa Whoa Whoa, Feelings.....

I've always been a touchy feely kind of person. When talking with friends, it's not out of the ordinary for me to touch their hand or arm, and hugs are always in abundance with greetings and farewells. And of course, like many people, I am drawn to touch things that appear soft. Actually, touch continues to be a way for me to learn about what I see.

When I was 10, we went to midnight mass on Christmas Eve. Being 10, I was up way past my bedtime. We got there a little late; there was only standing room in the church. I was standing right behind a woman wearing a fur coat of some sort, and of course, couldn't resist touching it. And fell asleep leaning against her with my face buried in the coat. Mmmmm....so soft.

The most horrifying thing for me in the months after I was first diagnosed was discovering that I couldn't feel anything on the right side of my body. Pain, softness, temperature; all those things didn't register. Which was convenient when my heel got caught in a heavy sound proof door and when I sliced open my thumb on a can, both cuts drawing blood. I was reminded of people with Hansen's Disease, leprosy, who have to maintain a vigilance about their bodies in order to avoid injury. Leprosy destroys peripheral nerves and leaves the sufferer open to infection because injuries aren't felt.

So for a couple of months, my ability to feel was impaired. The feeling began to come back and it was painful. Clothing was painful. I would do anything to avoid people touching the right side of my body, so I used a cane with my right arm to keep people away from that side. As bad as the pain was, it meant that feeling was returning so I didn't really mind it. Not having any feeling was worse than any pain I could feel.

Bees are one of the things I want to touch. They look so fuzzy, they must be soft to touch. But have you ever tried to touch a bee? They're not really into that. But I've done it a few times. Once when a bee was soaked from rain and other times when the temperatures were cold enough to make them sleepy and inactive.

At this time of year, many plants have gone to seed and some of those seeds are amazingly soft to touch.



Woolly bear caterpillars are in abundance now too, and they're soft.



And then there's the woolly aphid. Like other aphids, they live in colonies, tended to by ants for their honeydew, and camofluaged to look like mold. But if you look closely enough, you can see the bits of "wool", which is really wax-like filaments, moving as the insect moves. Sadly, my movie of it won't load so a still pic will have to suffice.




I discovered that even fruit flies have hair....but they're too small to touch and feel without squishing them.



S.

Friday, October 2, 2009

10%



One of my neighbours, Christian, is a young man who serves aboard the HMCS Ville de Quebec, a Halifax class patrol frigate that has been involved most recently in anti-terrorism in the Mediterranean, protecting aid ships off the coast of Somalia, and fisheries patrols in the North Atlantic. I last spoke to Christian a month ago and asked him to e-mail some pictures from sea, if possible, for the blog. Last night he sent me a few (approved by the Canadian Navy).

One of the pictures was from this past April off the coast of Newfoundland, in the George's Bank. The eastern side of Labrador and Newfoundland is known as Iceberg Alley, and for good reason. It is here that the Titanic went down in April, 1912.

Icebergs are composed of fresh water and whatever is floating around in the air at the time. Thousands of years ago, during the last ice age, volcanoes were erupting around the world, volcanic ash was carried by wind, and particles would settle, sometimes on the developing icebergs. There's a whole discipline devoted to studying icebergs and what they can tell us about the earth's ecology.

Because icebergs are composed of fresh water, they are lighter than the salt water in which they are found; that means they float. It's true that only 10% of an iceberg is visible and that's part of what makes them so dangerous.

MS is very much like those icebergs. We only see 10% of what is going on when we suffer a symptom. There's so much more activity that's gone on, sometimes for many years, before we even have an inkling that's something is wrong. Once symptoms appear we can take a closer look at the central nervous system with an MRI. Like an MRI we use satellite imagery to track icebergs. Once we have that information, whether it's an iceberg or lesions in our brains, we can take appropriate action.

S.

Wednesday, September 30, 2009

Really Cool Little Things

Some of the littlest things can demonstrate the biggest ideas.

I really enjoy those little things I find on my hikes and rides. One flower I've been coming across for a few years now, surprised me a couple of weeks ago. It's called jewelweed, monkeyface flower, and snapdragon, depending on who you talk to. I love how they hang around, their lips open like a choir singing:


The plants have seed pods, which when the seeds grow big enough, pop out of the shell and are flung up to 8 feet away. This was pointed out to me just recently, and since then I've been going around popping the little pods at every chance and giggling at every mini-explosion I create. I even took a pod home and popped it under the microscope to watch it up close and controlled. Take a gander at the film at the bottom of the post and ignore the first attempt at popping with a pen (it wouldn't quite fit into the dish).

Next up, a close up of a caterpillar's hair with little specks of dirt. The little hairs would fall out when touched, perhaps acting like splinters, thus encouraging whatever creature was trying to eat it, to spit it out.



Last weekend, the Wookie and I went for a drive to check out a couple of spots and ended up at his dad's place. I will refer to his dad as Mr. Magoo, because that's who he reminds me of. Mr. Magoo and his wife live on the ocean; it's in their backyard, so of course I couldn't resist going to the little patch of beach they have, looking for rocks and interesting things. I laughed as I disturbed a great number of sand fleas, digging into the sand for a stone or pebble. I gathered several pieces of beach glass, a couple of quartz samples, plus one piece of calcium carbonate and several tiny snail shells of varying colours. Once I got the shells under the microscope I was pretty amazed. Snails are a pretty cool example of the Golden Ratio. But I really hooted at the outward appearance of this orange shell. A small piece of dirt (or lint from my pocket) makes it look like a nipple piercing. Really....it's a shell....under a microscope.



Here's the film of the seed popping:



The mechanism of action for the seed popping involves the properties of tensile strength and elasticity.

A bunch of little things. Really cool little things with huge ideas. The laws of physics, art and architecture, self-defense...and you thought this blog was about bugs, bikes, and brains....

Tuesday, September 29, 2009

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.

Sunday, September 27, 2009

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.

Saturday, September 26, 2009

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.

Thursday, September 24, 2009

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.

Wednesday, September 23, 2009

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.

Tuesday, September 15, 2009

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.

Wow



Northern Lights. What more is there to say?
Oh, credits perhaps....Ryerson Clark, brother to Adena, with whom I cleaned out the green bin this summer. Rye and his wife are almost halfway through their posting to the north.

I've only once seen the Northern Lights. About 6 years ago I was driving along the south side mountain ridge of the Annapolis Valley and stopped the car to observe a curtain of green shimmering across the sky. We so rarely get to see them this far south I was speechless.

S.

Thursday, September 10, 2009

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.

Friday, September 4, 2009

More Odds and Sods

I've been out exploring a little more this week. Sunday found the Wookie and I going to check out the surf again just after Tropical Storm or Depression or whatever it was, Danny. It dumped almost 4 inches of rain on halifax and the winds and rainfall wreaked more havoc than the hurricane the weekend before. The waves were great the day after, and it gave us a chance to see Cow Bay and the giant moose that was made 50 years ago. It is only slightly larger than life size:



The waves at cow Bay last Sunday:



I have noticed a distinct lack of woolly bear caterpillars right now. In years past, I've noticed them in droves by the middle of August, but so far, I've only spotted a few, and they're quite small. Not sure if I'm just in the wrong places looking for them or if they were a little late this year because of all the rainy weather we had this summer.

Last April I posted some pictures of some land clearing that's going on for construction of access to one of the main highways in the area. I hiked up to the area again last weekend to observe the progress. All I can say is wow. I went into the offices of the Department of Transportation yesterday to take a look at the plans for the construction and was absolutely delighted with the reception I received from the chief engineer on the project and someone from the communications department. At first I thought they were there to escort me from the building, but they took me into a little boardroom and showed me the plans. Specifically I was interested in the infilling of the many little ponds and I was given details on which ones will be infilled and which ones will be left alone. And I discovered a new compensation policy put in place to help maintain green spaces and watersheds. Basically, for every acre of land disturbed by construction of roads by the DOT, they have to protect 3 acres. So for this particular project they will be giving assistance to the Sackville Rivers Association in a conservation area deemed by the SRA to be in need of protection or restoration. I paid a call to the SRA to find out what's going to be selected. They've been given up to 50 grand to develop a proposal for a project that may be worth up to 3 quarters of a million dollars. And they've selected a stretch of the Sackville river that runs behind a Department of National Defense rifle range in Bedford. Because it's on DND property it is seldom accessed and is probably in pretty rough shape. We'll be examining the area up close very soon to see what needs to be done.

In the meantime I joined a couple of the guys at the fish ladder where we removed two salmon from the trap and loaded them onto a Department of fisheries truck that was taking them to a hatchery:



I am seldom lucky enough to observe bats as by the time you realize what just went flying by, it's long gone. But the other evening while making my rounds, I came across a moth flitting around the back door of the building. I was waiting for it to land so I could get a closer look when something came from behind me and chased it off. The bat whizzed over me and attempted to catch the moth, but the moth zigged, the bat zagged, and the two of them flew by me a foot away from my head. I ended up standing there like a fool with a big grin on my face. The bat was close enough for me to get a good look and I found that exhilarating (I know, I need a life).

Which reminds me, one of my neighbours, Kathy, told me last night she's really enjoying reading the blog, laughing out loud at work, and living vicariously through me (?!?). Kathy, any time you want, you're welcome to join me on my hunting expeditions; I'll supply the net and the baggies for our specimens, you just have to show up and not go "Ewww".

S.

Saturday, August 29, 2009

Bugs and Burgers

The Wookie and I were on vacation this past week and went for a couple of minor hikes/walks with Dad. Dad normally skates during the week for exercise and does some walking but the "little darlings" as he likes to call them, had hockey camps all week making the ice unavailable. Since I had taken Dad on two hikes the previous Saturdays, he wanted to continue during the week.

My two favourite men:


I also spent a little time this week checking out bugs under the microscope including the unnoticed emergence of Bea Ware, my Warehouse Beetle larva, as an adult. It took 19 months for something to transform from the larval stage, which is not typical, but not unusual. It had shed it's outer skin several times (like 9 or 10) before finally growing up and into a mature beetle.



I took a closer look at moth and butterfly wings and was quite surprised at the amount of "hair" on these things. I was able to see some of the scales as well. The scales are powdery colours that easily come off on your fingers if you touch the wings of butterflies.



I've had this tiny moth-like creature for several weeks now, not sure exactly what it is. It's antenna was more like a butterfly, but I've been unable to corretly identify it so far. I'll have to send off a picture to the curator of zoology at the Museum of Natural History in Halifax and he might be able to help me.



On our hike Thursday I took home a thistle to take a closer look. They have the same "hook" structure as burrs which allows them to stick to everything they come into contact with. It is this hook structure that inspired NASA scientists to come up with Velcro.



Earlier this week, A and W had a Cruise In for a Cause fundraiser for the MS Society of Canada. Locally, we had a number of volunteers at different locations and I put in an appearance at one of their stores. As well, Mom and I were interviewed by one of the TV stations for a story about MS and family support. That story ran the night before the fundraiser and was tied in to the A and W, as they are branded as a "family" restaurant.

I've been trying to catch up on blogs this week and get some sorely needed organizing done (closets, cupboards). With time available to me now and the heatwave finally broken (as of last Tuesday), I have started to get into it. But first, I'm off to inspect a construction site to make sure they're not disturbing a pond I discovered last April. They've covered over a bit of the outflow area and I'm not impressed. I need to see if they're diverted the outflow from that pond. And if I find a few creatures of the six legged variety, that'll be a bonus.

S.

Monday, August 24, 2009

Hurricane Bill

So hurricane Bill was pretty much a bust. There was some damage, but luckily not nearly as much as was feared; Bill kind of stayed offshore for the most part and so we got a ton of rain yesterday and a lot of high wind for a few hours. As I am one of those folks who pays attention to weather warnings, I didn't venture anywhere near the coast line until this morning. The Wookie and I went to Lawrencetown beach to check out the waves, though I prefer beachcombing. The tide was coming in again and the waves pretty spectacular still, so we didn't get too close to anything.



If you look carefully you can see the birds (sand pipers of some sort) at the edge of the water. Lawrencetown beach is usually quite sandy but the wave action threw a lot of stones up on the beach or dragged them from higher up.



There was also a lot of fog. This is one of the most popular beaches in the area, but the water is always cold. It is one of the more popular destinations for surfers on the East Coast as well. The wookie and I were in summer attire and should have had long pants on:



We continued in the car along the Eastern Shore to Lower East Chezzetcook or some such named area (I can't keep 'em straight) and discovered a few surfers in the waves:





There were a few mishaps at Peggy's cove yesterday. There are always people who under estimate the power of Mother Nature and over estimate their ability to deal with it and so get pulled into the water, usually by what they call a "rogue" wave, one that snuck up on them. At the beaches, several people over the years have been pulled out by strong undertows when they were swimming. Some folks don't make it. Luckily, no fatalities from Bill, at least in Canadian waters. Sadly, some people in Acadia Park in Maine weren't so lucky.

The power of Mother Nature is incredible and deadly.

S.