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.

Did It Leave a Mark?

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

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

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

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

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

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

S.

Is My Brain Connected?

Picture is from Wikipedia.

This is the latest study I am involved in:

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

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

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

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

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

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

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

S.

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.

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.

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....

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.