Saturday, March 29, 2008
My great-uncle Willie was one of 11 children born into a French Canadian family in a tiny village in Cape Breton in the early 1920s. He joined the Merchant Marine as soon as he was old enough and served on ship. In 1942, he and a few shipmates were discussing the heavy losses occurring in the St. Lawrence Seaway and on convoys across the Atlantic. They, like many other young men, wanted to do more to "stop the Hun", as he told me. So they went to the nearest Armed Forces office and signed up for the regular army or "where ever they needed us". He said a guy came around and was looking for volunteers for a new unit. Eager to get into action, and not knowing the first rule of the Army (never volunteer for anything), Uncle Willie said the next thing he knew he was jumping out of airplanes over Montana.
Turns out Uncle Willie became a member of the 1st Special Service Forces, a joint US-Canada commando unit who came to be known by the Germans as the Black Devils. they were trained in a variety of areas, including hand to hand fighting, stealth maneuvers, mountaneering and demolitions.
Willie, like his siblings, was small and wiry, with dark coloring. Oh, and very handsome. He was fluent in French as it was his mother tongue and I can only imagine that was a bonus for being parachuted into occupied France.
I don't know how many jumps he made, but I do know that he was taken prisoner at least twice, but managed to make an escape. I asked him once if he captured any Germans and he said only two. "And one of them was drunk", he said. I don't know if I believe any or all of what he told me. I asked him about injuries, too. He told me about a grenade being lobbed into a group of them and they all hit the dirt as it was exploding. He got up afterwards and had a slightly sore nose, but he thought it was from diving face first into the dirt. About a month later he went to the Army doctor because his nose was really sore. The doc looked at it and felt it. Then he worked out a piece of shrapnel that had been embedded since the grenade explosion. I asked him if he saved it and he said no, but he wished he had.
After the Devil's Brigade, Willie stayed in the Canadian Armed Forces. He was sent to Brandon, Manitoba, where he was a physical education instructor and where at the age of 30 he had a stroke. He was married by that time and had a young daughter and all of a sudden he couldn't walk or talk. He amazingly recovered 100%, I imagine because of his fitness level and sheer stubborness.
Sometime in the 60s or 70s Uncle Willie retired from the Armed Forces and started a new life selling insurance in his home province. Every time I saw him I was struck at how regimented his life seemed to be. I guess he was used to routine and liked it that way. But he was a very gentle soul. And always dressed very nicely. I remember he wore a gold chain bracelet that was such a contrast to his dark colouring and as a child I was amazed at how clean his hands always were. I also thought he was extraordinarily handsome. So did my mother, she tells me. In fact when she was a little girl she used to want to marry him when she grew up. An she told him that, too.
His wife passed away about 10 years ago and he moved into a senior's complex where he lived on his own until he had a car accident 3 years later. He wasn't injured too badly; it was determined he had a TIA, a mini-sroke. And he had probably been having them for some time. He didn't want to, but he eventually moved into a nursing home.
About three years ago, I went to visit family in Cape Breton and called Uncle Willie to see if he wanted to take a drive to the old homestead one afternoon. I went to the nursing home at 9 AM to pick him up and he was rarin' to go. Off we went, and he had brought a pair of binoculars so we stopped from time to time to take in the spectacular views. We went by the old homestead and had lunch at a local diner. Willie asked if we could stop at the Legion Hall. Of course! So in we went and he told me stories about some of the young men from the village whose pictures were on the walls. Of course the pictures were of the men who hadn't returned. It was sad, but a good day.
Uncle Willie died a year ago at the age of 85. He was still very handsome.
Thursday, March 27, 2008
Wednesday, March 26, 2008
When I was diagnosed with MS I asked my docs about supplements or a specific diet that might help. I was told that the typical low fat high, fiber route was the way to go, that there was little in the scientific literature to support one diet or another. My family doc recommended that I use sunflower seed oil when cooking, as that oil might aid with the regrowth of myelin that had been destroyed. As far as other supplements and vitamins go, I sometimes take vitamin D, calcium and magnesium, as I know for a fact I don't get enough of those in my regular diet and living in the Northern hemisphere I am robbed of any helpful sunlight for several months of the year. I also take fish oil and Vitamin C, only during the winter.
I used to go for massage therapy on a fairly regular basis, as we have two schools in my city that offer "neuro clinics" conducted by students, so they're inexpensive. And the students are supervised. I stopped going when I felt the benefit for me was no longer what it used to be. I will go from time to time as the need arises. I am also embarking on a regime of yoga to supplement my biking as exercise.
I am not a proponent of CAM, complimentary and alternative medicine, as there has not been enough scientific study of these methods of treatment. (Please don't send me links to "studies" by people or companies that have investigated their own product. They are not unbiased.) But, if you have a large study conducted by a reputable organization or institution, with a large sample size, large control group, and reproducable results, then let's talk. It's not that I don't believe that some of these treatments have merit. It just hasn't been demonstrated yet. I would be the first one to jump on the bandwagon if something worked. If you use CAMs and they work for you, then good. For you.
Today, I read an article from Wired magazine. In it, the author details plans the U.S. Army has of offering money to researchers who study alternative therapies and treatments for trauma spectrum disorders including Traumatic Brain Injury and Post Traumatic Stress Disorder. I am excited about this. Why? Well, first of all, the Defense Department "is dedicated to supporting evidence-based approaches to medical treatment and wants to support the use of alternative therapies if they are proven efficacious," notes a recently-issued request for proposals. One way or another the U. S. Army may be able to put to rest claims of CAM success or they may disprove those claims. What is the Army's bias? They want their personnel to be treated with something that works and possibly to be put back in an active role. They are willing to spend the money to find out if something works, whether it's transcendental meditation or art therapy or nutritional supplements to improve cognitive functioning.
Secondly, medical science progresses in spurts, and we are at the beginning of another spurt with the war in Iraq, the conflict in Afghanistan, and the numerous other fights going on these days. Every time there is a major conflict on this planet we find new ways of injuring each other. As a result, military docs are on the forefront of treating the "new" casualties. The treatments they devise get passed along to the general public. After World War 1, the field of plastic surgery progressed very quickly. Men were returning from war, missing huge parts of their faces or bodies. As a result of the wounds that surgeons were facing, they developed new techniques of repair for the soldiers that were then applied to civilians. The docs fixed 'em, or tried to, then we civilians reaped the benefits.
What benefits could there be for people like me, with MS? In the past, the study of the effects of injury has greatly increased our knowledge of how a body part is supposed to work. Traumatic brain injuries of soldiers may give us more insight into how our brain recovers and rewires, which is directly related to MS, stroke, and other neurological conditions. Unknowingly, soldiers will be contributing to our wealth of knowledge about function. And they will also contribute to our knowledge of treatment of dysfunction.
The Army will be allocating $4 million for these studies. In the grand scheme of things, that's not a lot. But let's say 20 studies are approved and out of those 20, 3 are found to be quite promising. Those 3 would then be investigated further and so on. Perhaps the Army will discover a type of effective treatment previously dismissed because of inadequate research. I look forward to their findings, because we civilians will be the lucky recipients of the results. After the soldiers, of course.
The image at the top of this post is the insignia of 1st Special Service Force, aka the Devil's Brigade, a joint US-Canada commando unit during WW2. My Uncle Willie was a member of this unit. He also suffered a stroke after the war while he was an army phys ed instructor. He recovered completely and only passed away last year at the age of 85. I need to post a blog on him alone one of these days.
Tuesday, March 25, 2008
Before I started school, I begged my parents to teach me to read. They wouldn't. They taught me all the letters and numbers as required, but they wouldn't teach me to read. I was desperate to learn. The school of thought at that time, was not to teach your kids to read before they went to school as they would end up ahead of their peers and that would lead to grade skipping and that would lead to social problems etc. So I was told, "You'll learn to read when you start school". Of course I was eager to start.
My first day of school I was pretty excited. Today was the day I was going to learn to read. I came home after school very upset. I declared that I wasn't going back the next day. My mom asked why. "Because they didn't teach me how to read", was my reply. I was very annoyed.
It should not have been a surprise to my parents that I was so angry. After all, when trying to teach me how to tell time (at the age of 3), I could not be convinced that the part of the clock with the numbers on it was called the "face" of the clock. "That's not a face!!" And when they weren't looking, in my frustration, I took the clock apart, took the cardboard face off it, and tore it into little pieces. I can't imagine why my parents didn't have me in therapy fearing their darling little girl (and I was ) wasn't going to be a homicidal maniac.
Back to learning how to read. Somehow my mother convinced me to go back to school the next day. Of course I soaked it up like the little sponge I was. Pretty soon I had read all of the books in the class and was going to the school library by myself to get more. One day I found a shelf containing Babar the Elephant books. Wow! I had heard other kids talk about these books and the character so I was pretty excited. I took one off the shelf and opened it up. But I couldn't read it!! It wasn't printed in type like other books. The type was in script. Long hand!! I took the book to the librarian and asked her why the book was like that. She didn't really have an answer for me except to say that those books were for older students. "You mean they can read this?" I asked, incredulous that anyone could make out words in what appeared to be scribbling." What grade do I have to be in to read this?" I asked. "Grade 3 or 4"' she told me. I was beyond taking my frustration out on inanimate objects, so instead of tearing the book into little pieces, I carefully put it back where I got it and vowed to myself that even when I did learn how to read cursive writing I would NEVER read a Babar the Elephant book. Ever. How DARE they put a book in the library that I couldn't read. It wasn't that I wasn't allowed. But it had been deliberately set in a type that I wasn't going to be taught until 2 or 3 years later. Why would they want to put that type of a book in the library if half the student population couldn't read it? I didn't understand. It was like putting a bowl of candy in front of a child and saying they could have some in 2 or 3 years, but not before.
Fast forward to grade 10. After struggling with absolute idiots for classmates, with a few exceptions, for two years in junior high and daily verbal and mental abuse (and the occasional slap) from bullies at school, I was in high school with a select few classmates in Advanced Math, English, and History. Finally, I could get back to what I enjoyed about school-learning. And with other students who wanted to learn, rather than goof off. But I hit a brick wall in math for the first time in my life. For two months I laboured over that subject, just not getting it. I was frustrated. My parents were frustrated. My teacher, Mr. Lyne, was frustrated (more on him in another post as he was and still is one of the best teachers I ever had). And then one day at school, Mr. Lyne was at the front of the class, explaining something when suddenly the entire room lit up with the light bulb that turned on over my head. He stopped mid sentence when he saw the smoke coming out of my ears and my mouth twitching in anticipation of blurting out the rest of the explanation. I still remember him bending slightly at the waist towards me, encouraging me to speak, and the smile on his face getting wider and wider as I did. When I was done, he and the other students in class cheered. I was thrilled beyond belief. It was like I had just discovered a cure for cancer. I finally got it! I loved that feeling, and it propelled me to learn more to get that feeling over and over again.
Last year, the Wookie and I were talking about Quantum Physics. Really. Actually, the Wookie was trying to explain it to me, or at least one aspect of it. I was following pretty closely, I thought, but didn't reach the same conclusion as he did. We checked something out on the net, a demonstration that came out the way he said it would. "But it shouldn't do that!!" I exclaimed in my naive way of believing in the basic laws of physics as I understood them. "But it does", was his reply. "But it shouldn't!!" was my brilliant response. "That's just so wrong!!" I insisted, much like my friend Lana said when we went to see The Ring and the little you-know-who did you-know-what(I don't want to spoil the ending if you haven't seen the movie). There was a shaking of the earth as my understanding of the laws of physics was completely shattered. I am still frustrated with my apparent inability to understand quantum physics and time travel (I insist you can't time travel).
Over the years I have continued to read and learn and get frustrated. To this day, I have never read a Babar the Elephant book, even though they are now printed with regular type - I checked. But I have come to accept that there are things I will never come to understand. Like leg warmers as fashion. Like Quantum Physics. Or World Wars and genocides. Or multiple sclerosis. Believe me, for the past ten years I have been reading and studying and asking questions. Yes, "We're working on it" is getting pretty tiresome to hear, and yes, I'm getting really frustrated, like you probably. What do I do? Tear something up? Punch a hole in the wall? Refuse to participate in something? This is one situation over which I have little control. So I give over control to the doctors and scientists who are working on the problem. And I offer my body to be poked and prodded and scanned and my PR skills to raise awareness and money for the cause.
Next Monday I will be meeting with my neuro, Dr. Murray, and one of the clinic nurses, Judith, to review my MRIs from the study I've been in for 10 years. One of the questions I will be asking the good doctor is "Are you frustrated, too?"
Monday, March 24, 2008
E is for Entomology. And Entertain. And Effusive. And Egocentric. And Eclectic. And Exuberant.
And Excellent, according to Linda at Brain Cheese. I really think the steroids have gotten to her as she gave me this award. Thank you, sweetie.
I know Lisa at Brass and Ivory gave me an award a while back, too, but I completely forgot to post it. So, belatedly, thanks go to Lisa.
I'm thinking of designing my own award to hand out. Maybe a Is Kind to Bugs Award for demonstrating a tolerance for creepy crawlies despite wanting to squish 'em. But I'll think on it a while.
I am kind of tired. Avonex hangover day today.
Saturday, March 22, 2008
Of course, neither of us got sick.
I recall a few years later my dad and I out walking around the neighbourhood. We came across an ant hill and dad and I bent down to take a look. Little ants going about their business. Dad said "Watch this" and he let a big gob of spit fall from his lips onto the opening of the ant hill. They went nuts! "They think it's raining" Dad said "so they're trying to get everyone back inside".
My dad's father, my grandfather Frank, was a lover of nature. He'd sit in his swinging couch out in the tiny backyard of his house and watch spiders and bugs of all sorts. I can honestly say I was not fond of spiders, still get a little creeped out by the bigger hairier ones, but I would sit with him and I did learn how they went about their business, gruesome as it is.
The first incident demonstrates an early attempt at replicating results from an experiment. Not that that's how my mom or I saw it, but in retrospect, that's what it was. The next incident showed another experiment that was repeated many times over the years, with identical results. And the last scenario was simple observation, again repeated over the years.
I continue to be fascinated by creepy crawlies, no doubt in part to my early education in the scientific method and the results obtained from those experiments. I have handled all sorts of creatures in the wild, including bees, with no fear, and only a healthy respect for stingers and possible bites. I have never been stung or bitten. I suspect that's only due to luck, not that I'm a sort of entymological Dr. Dolittle.
I pick up worms in the parking lot and put them somewhere safer. I catch spiders and other critters in my apartment (not often) and release them to the outdoors. A month ago, I found a flour beetle larva, in my rice (so maybe it's a rice beetle larva), and put it in my bug container which has a couple of magnifying windows on it. I forgot all about it until yesterday. I took the top off the container and prodded the little thing. It began moving so I put a little flour in there with it and am hoping it becomes an adult beetle.
I have a bug kit I take with me when I'm on the bike. It has a number of baggies and a couple of glass jars in it for specimens and a little fish net to catch the elusive ones. "Chance favours the prepared mind". Of course, Louis Pasteur wasn't thinking about collecting bugs when he said that, but it applies.
I prefer to find and take home intact dead creatures, though I have been known to put living ones in the deep freeze for a couple of days to put them to sleep. Last summer, the Wookie and I went to a beach about a half hour from where I live. We left our lunch and towels on the beach and went for a long walk. At one point I had no less than 3 species of long horned beetle on my hand and a gorgeous (non-stinging) wasp. I managed to keep all four of these creatures crawling on my hands until we made it back to our towels. While rooting around for baggies, one of the beetles and the wasp flew away, but I still managed to take two of them home.
I have been known to go to a local gas station late in the evening with a bigger net and baggies. There are some pretty big moths and other winged wonders that hang around the lights and if I'm lucky will sometimes find intact dead ones around the pumps.
"Then what?" you might ask. They go in the deep freeze. And after a couple of days I take 'em out, thaw them, and then mount them. No stale cardboard and pins for my bugs though. I put 'em in clocks, watches, or wooden shadow boxes. It's more artistic. Science and art together.
Wednesday, March 19, 2008
And on Wednesdays, Charles of msbpodcast.com kindly allows me to read one of my past posts on his show.
Here's my second column for the Atlantic Pedaler. It'll be in next month's issue.
As I stated in my last column I was diagnosed with MS in 1998. My right side was affected leaving me unable to hold a pen or brush my teeth effectively or even tie my shoes. I had another attack 18 months later that hit the left side of my face, leaving me with a lopsided smile and a lisp. My third attack was last August and was a recurrence of my initial symptoms but to a much lesser degree. Throughout the past 10 years I have had to deal with extreme fatigue and on occasion some pretty intense pain. I estimate that I have recovered 97% of what I lost with each attack.
My purpose in writing this column is to educate folks about MS, publicize the MS Bike Tour, and solicit funds for this cause. I am not the poster child for MS, though an argument could be made that I should be the poster child for best case scenario for MS.
MS has given me a number of things for which I am grateful. One of those things is discovering cycling. Over the years I have tried different sports and physical activities to keep active but have never really "gotten into" anything. I never experienced a runner's high or felt really great and energized after a workout. I did not like exercise. And exercise seemed to do little for me. As a kid I had a bike and rode it everywhere. I even rode a little bit in my 20s. But two years ago at the age of 42 I took it up again to encourage my boyfriend's training for the 2006 Rona MS Bike Tour. In a matter of days I was hooked. Within weeks I was cycling every chance I could, even if I only had time for a 5 k ride, I went out. I wasn't fast, or graceful, and probably looked pretty dorky, but it was soooooooooo much fun. And I was coming home sweaty and muddy (with any luck I'd find a puddle to go through) which was a bonus. It meant that I was getting a good workout (the sweaty part) and enjoying it (the muddy part). I liked exercise for the first time in my life. I was also energized from the activity and not worn out. My weight didn't change as I was building muscle mass and losing fat at the same time, but I looked and felt great.
As an added bonus to the biking I was exploring trails around the HRM. I'm a nature nut, so was able to put together a little kit for collecting specimens of insects I wanted to inspect up close. It all fits into a pack on the pannier. Butterflies, moths, and beetles were within reach. Not to mention the toads and frogs I could catch to take a closer look (then let them go).
I live in Bedford so it's nothing for me to hop on the bike at Hammonds Plains road and cycle to the Superstore, pick up the Bedford Sackville Connector Trail to Sackville and back for a good 14 k ride after work. After traveling this trail for a while I became involved with the Sackville Rivers Association which is another bonus for me. We go out to do repairs on rivers and streams in the watershed and that leads to discovering more trails I can bike. And more creatures for me to investigate.
I had been itching to get on the bike again and so ventured out twice recently. The harsh winds and subsequent snow have driven me inside again but not for much longer. I've got warm bike pants, a fleece band to cover my ears, and goggles and I'm not afraid to use them.
The goggles I use are actually my chemistry lab goggles from my first year at university. I wear them when cutting up garlic and onions and have worn them in snowstorms. They're not too bad for biking, too. All right....pictures will follow, eventually.
I met up with Cranky Baby's mom yesterday. I now have a matching Happy Face button just like Cranky Baby to wear on my biking jacket. And Cranky Baby has a few new t-shirts from the dollar store. And yes, as soon as the weather clears a little more, there will be pictures.
Sunday, March 16, 2008
My neurologist and his wife happened to wander into the party and they smiled politely as I made my way to them. It wasn't until I opened my mouth and spoke that they recognized me.
Which leads me to believe that I may still have a career as a spy. You know, if the radio thing doesn't pan out.
Saturday, March 15, 2008
I'm not suggesting that as a patient I hold the key to the MS mystery. I'm still in kindergarten compared to the scientists doing research. But maybe one of us will inspire an idea in these scientists.
Friday, March 14, 2008
At the game we had excellent seats, sitting right behind the Atlanta Vision. At the half time we even chatted with the Vision's coach and thanked him for making the trip on such short notice. There were two university students sitting right behind us who were very vocal supporters of the Rainmen and razzed the Vision every chance they got, When the coach was talking to us they also thanked him for the effort in getting to Halifax and apologized if they were bugging his team too much with their cheering and chanting. The coach laughed and said no, it's good to see the team support. By the way, the Vision had to play in borrowed "Team Canada" T-shirts as the only piece of luggage that got lost was the one with the team jerseys. They had numbers in masking tape on their backs.
I have to say that both these teams and their coaches showed true class. I really enjoyed the family atmosphere and even the two guys behind us were fun. I asked them a lot of questions about some of the fun stuff going on during time outs and half time. They were loud but polite. John and I are definitely going to more games next season.
A couple of days ago, John and I took a drive on one of my training routes just to see how the road was shaping up. We saw a couple of funny things. The first was this.
Now, a dead squirrel on its own isn't funny, but every time we come across some unfortunate creature like this we say "Stupid place to take a nap". It works for raccoons, deer, coyote....and if it's in the middle of the road, I move it to the side.
The other funny thing is this. Two "Smart Cars", tiny little things.
Again, on their own, not funny, but it's the commentary that goes with it:"One for each foot".
At the lecture I attended after work today and before the basketball game (yes, full day), I learned about some of the work being done in Halifax on Parkinson's research. There really wasn't time to go into depth about neurogenesis sadly, so I have little to report on that front. I'll do a little digging and report back at a later time.
Thursday, March 13, 2008
Fast forward 10 years and suddenly we have an onslaught of information everywhere about neuroplasticity. It's a concept that means the brain is very capable of change, that new connections can be, and in fact are, made constantly. Where exactly are these connections happening? In the white matter of the brain, which is responsible for the different parts of the brain to communicate with each other.
The next question you might have is "How do we make more connections? And more importantly, can we make connections to bypass damaged parts of the brain?"
First of all, an optimum environment with basic building blocks is required. An optimum environment would be one free of physical impediments like alcohol and drugs, polluted air, improper amounts of sleep, and stress; and since that is almost impossible, reduce the impediments you are able to. Basic building blocks would be a low fat, high fibre diet with the "good" fats in suitable amounts (a great cheeseburger or hunk of chocolate cake is good for mental health once in a while-at least mine anyway).
Once you've started improving the environment, the fun begins. Research has shown that proper diet, sleep patterns, stress levels, and regular exercise increase the connections your brain makes. Regular exercise? Well, first of all, the exercise increases blood flow to the brain, improving the environment with oxygen and nutrients. Secondly, movement of your body involves a complex set of actions in the brain, neurons firing all over the place, reorganizing and reinforcing the neural networks you have in response to new stimuli.
So that's what we know so far. It's what people have been telling us for years. Use it or lose it. And now that we have a better understanding of how the brain makes these connections, we can put it into practical use. Move the parts of your body that you can, get someone to help with the parts you can't. There are adaptive programs of yoga, stretching, and other exercises available on the web and from your local MS Society office. (And physiotherapists can help with appropriate movements to help relieve symptoms of MS as well)
It appears that movement is the key to making more neural connections. And that's what we want to do as MSers, make more connections to (hopefully) bypass the damaged parts of the brain. That's what rehab for stroke victims entails, why wouldn't it work for us? What have we got to lose by trying? Besides a few unwanted pounds.
At this point you may be wondering about "mental" exercises for your brain. After all, every time you turn around you're reading or hearing about books, puzzles, and games to "strengthen" your brain or improve brain fitness. It's a little more complicated than just doing a crossword puzzle once a day. It's about actually using many cognitive processes that provide novelty, variety, and challenge. So mix it up. Learn something new. Pick a topic you always wanted to know about, research it, and learn about it. Then pick another.
The same can be said of physical exercise. Change it up a little bit, use different routes if you're walking or biking, do your exercises in a different order. Change is novelty and variety and that's a good thing for your brain.
I went to a lecture Tuesday night about neuroplasticity and neurogenesis. I woke yesterday morning feeling very excited about this topic as it explains a couple of things I noticed about myself since I started cycling. First I noticed an improvement of my mood, though you may be thinking that I'm such a ray of sunshine I could never be in a bad mood. But it was there. I also noticed that fatigue didn't hit me as often as it had. My concentration improved. These were subtle differences I noticed for myself, nothing obvious to anyone else, but I also looked great and I felt great. Yeah, I still needed to get rid of a few extra pounds, but I had more compliments last summer than I had in a long time.
I wrote to the lecturer yesterday with a question of sorts:I'm curious about how the brain rewires where lesions are present and neurons may not be damaged, compared to stroke damage where neurons are killed.
Dr. Eskes kindly replied with good news:I checked pubmed and found many references on this as well as a review on this very topic.
Sports Med. 2008;38(2):91-100.
Exercise and brain health--implications for multiple sclerosis: Part 1--neuronal
White LJ, Castellano V.
Department of Kinesiology, University of Georgia, Athens, Georgia 30602, USA.
Recent studies suggest that exercise may enhance neurobiological processes that
promote brain health in aging and disease. A current frontier in the
neurodegenerative disorder multiple sclerosis (MS) concerns the role of physical
activity for promoting brain health through protective, regenerative and adaptive
neural processes. Research on neuromodulation, raises the possibility that
regular physical activity may mediate favourable changes in disease factors and
symptoms associated with MS, in part through changes in neuroactive proteins.
Insulin-like growth factor-I appears to act as a neuroprotective agent and
studies indicate that exercise could promote this factor in MS. Neurotrophins,
brain-derived neurotrophic factor (BDNF) and nerve growth factor likely play
roles in neuronal survival and activity-dependent plasticity. Physical activity
has also been shown to up-regulate hippocampal BDNF, which may play a role in
mood states, learning and memory to lessen the decline in cognitive function
associated with MS. In addition, exercise may promote anti-oxidant defences and
neurotrophic support that could attenuate CNS vulnerability to neuronal
degeneration. Exercise exposure (preconditioning) may serve as a mechanism to
enhance stress resistance and thereby may support neuronal survival under
heightened stress conditions. Considering that axonal loss and cerebral atrophy
occur early in the disease, exercise prescription in the acute stage could
promote neuroprotection, neuroregeneration and neuroplasticity and reduce
long-term disability. This review concludes with a proposed conceptual model to
connect these promising links between exercise and brain health.
This is a fairly new topic requiring further research, however, there are positive signs that exercise is beneficial to those of us with MS and a possible source of rehabilitation, my idea being that you must exercise the affected areas. We don't want to just come up with compensatory actions for what we may have lost, but make new neural connections or pathways for the affected areas. As humans we have a tendency to take the easy way, path of least resistance and all that. We should probably be exercising those parts of us that offer the greatest resistance in order to promote nerve growth, regeneration, and rewiring. I once talked to a paraplegic who said he wanted to keep up an exercise routine to keep his non-working muscles in shape so he'd be ready for the day when scientists came up with an effective treatment for his spinal cord injury and he'd be able to walk again. Even if exercise doesn't work to completely restore what we may have lost, at least we'll be keeping in shape and we'll be ready for the day when a cure is found.
In case you weren't aware of it, this is Brain Awareness Week. Are you aware?
I will address neurogenesis in a later post. There's another lecture concerning it and transplantation of neural stem cells I want to take in on Friday.
In case you weren't aware, the title of the post is from The Graduate.
Wednesday, March 12, 2008
I am working on a post about neuroplasticity (I know Charles will be keen on this one) so look for that one in a day or two.
Here's my first column.
If it weren't for having MS, I wouldn't be a cyclist. Ken kindly asked me to write about my experiences with cycling and having MS, so until the bike tour I'll be writing a regular column about this illness, my journeys with my bikes, and how I've become a recreational biker.
In January 1998 I was diagnosed with Multiple Sclerosis. For the past 10 years I have been extremely lucky to have had little effect from this disease and hopefully it will continue to just remain fairly benign.
Since my diagnosis I have been a volunteer with the MS Society Atlantic Division in many capacities, mostly as a speaker or MC at events like the Super Cities Walk. Last year, though, I participated in the Rona MS Bike Tour, biking 100 k over two days. Considering that I had been a couch potato until the year before that, it was a great accomplishment. I also managed to raise over $15,000 for the MS Society in the process.
My quest to ride began when my boyfriend, John, decided to ride in the 2006 bike tour. I said I would train with him so I hit the gym for two months before even getting on a bicycle. I have never been exercise-friendly; even going for a walk was difficult as I would easily be distracted by bugs, rocks, plants, and anything of that sort, stopping to inspect anything of interest to my nature-loving mind.
Two months at the gym and it was time to get a bike. A Canadian Tire Supercycle seemed like a good place to start (after all, I had those as a kid) so I got one - a mountain bike. I soon discovered that biking was my sport. We hit the trails around HRM (Halifax Regional Municipality)and pretty soon it was nothing for me to do 20k rides. And I was beginning to think that a 100 k ride for me was feasible.
John did the bike tour in 2006 and I signed up to do the one in 2007. We biked after the tour including a trek to Jack's Lake in Bedford where I had my first fall off the bike. I was so proud of my "battle scars" that I got more a couple of days later doing the Whopper Dropper in Bayer's Lake.
The physical activity was proving to be a good thing for me and my MS. I was getting in shape. Riding in the woods or on trails was a mind clearing activity. And I was addicted to riding. Going down rock strewn hills at top speed was a little disconcerting to the boyfriend, mind you. He had visions of having to explain to my parents why I was in hospital with broken bones.
MS can play havoc with your internal temperature gauge. I would over heat quite easily and that would zonk me out too fast so I began searching for something to help keep me cool (besides the tons of water I was drinking). I had a neck bandana that I put in cold water before a ride. The gel beads in the bandana would swell and retain the water, so that helped. But there was nothing out there I could put in my helmet to keep my head cool. If my head is cool, the rest of my body follows that lead. Then I discovered the inserts road crews wear under their helmets. One of those would work! I found a company that sold them, but only in cases of 12. A great guy (Stan) at K and D Pratt managed to get me a sample from the company that makes them. What a great invention!
As you all know, riding a mountain bike on pavement is tough going. So I decided to continue to train with it but was going to get myself a touring bike, too, for the actual Bike Tour. Christmas came and I got myself a Specialized touring bike from Cyclesmith. I also got a trainer so I could keep cycling until the weather cleared a little bit.
I also had to undertake fundraising. A friend I ran into one day donated $5,000! He had been looking for something for a tax break and my timing was impeccable. I harrassed my friends, neighbours and co-workers for another 5 grand.
The weather improved and pretty soon I was taking the bike out after work and on the weekends John and I would do 20-30 k rides on the trails. And we would bike with teammates from our team, the Cycledelics.
A few days before the tour, my generous friend called me to ask if I wanted another $5,000. Of course! Suddenly I had $15,000 for the Bike Tour. I was walking on air, my excitement level was almost unbearable. I was going to do this. I was going to bike 100k!
Two nights before the tour I had an "almost" panic attack. What if the heat got to me? What if I couldn't bike those hills? What if, what if, what if....I think the adrenaline rush I had experienced for an extended period of time just overwhelmed me. I calmed myself down by saying, "I'm just going for another bike ride" and pretty soon it was the morning of July 28th. I had decided to head out right away on the route as it was going to be very hot and I wanted to take advantage of the early morning coolness. Good thing, too, as the temps were at 30 by 11 in the morning.
I left Windsor at 8:10 after registration and arrived at Acadia at 12:15. I had been worried about Mount Denson, but that wasn't a tough hill. It was the last hill from the Gaspereau to the top of Ridge Road that almost did me in. I ended up walking the last 100 metres to the top and cruised down the last little bit into Acadia. I did it! It took me 4 hours and more than 3 litres of water but I did it. The next morning I would do it in reverse. In the pouring rain. Glorious, cool, wet rain that soaked me completely and kept my body at a very comfortable temperature. I had a tire flatten as I was pulling into the rest stop in Hantsport, but after it was fixed, I set out again. The return was a little slower for me and some of my teammates caught up with me, so a bunch of us were able to cross the finish line together. I did it! Former couch potato and person with MS. An athlete!
I am signed up again for this year's tour so I'm on a quest to fundraise. If you'd like to contribute to my quest, click on the link for fundraising. If you'd like to join the bike tour visit www.mssociety.caS.
Sunday, March 9, 2008
The other thing that happened is that I sent an e-mail to the publisher of a regional e-zine for cyclists in Atlantic Canada asking if I could publicize the Bike Tour and solicit donations through the e-zine. He wrote back and asked if I would write a monthly column about the event, my cycling experiences, and recreational cycling as an MSer. Ask me if I was excited. OK, then, I'll just......well, you get the picture. If it weren't for MS, I wouldn't be cycling, I wouldn't be involved in the Sackville Rivers Association (which is another post coming soon), and I wouldn't be involved with Nova Scotia Rails to Trails. Which means I wouldn't be finding as many nifty 6-legged specimens as I have found on my journeys. Which means you wouldn't get a chance to see the cool pics. So it's a relatively good thing I have MS.
Friday, March 7, 2008
I own a self winding watch that doesn't. Last year I took it to a professional for cleaning and a tune up. He got it up and running again, I took it home, wore it for a day and it stopped. I put it in my purse to take back, and when I pulled it out to show him, it was working again. I put it on and a couple of hours later it stopped again. I took it back and was informed that sometimes self winding watches need actual physical winding.
I was driving with my mother one day when she noticed a knocking sound in the engine of my car. "You should get that checked out", she said. So I take it in to the mechanic and explain about the noise. "When does it make the noise?" he asked. "When my mom's in the car", was my reply. (You should have seen the look he gave me; no sense of humor) He got in the car with me and we took it for a spin. Of course there was no sound.
I have problems with electronic equipment at work. One day I crashed 3 different computers, one just by sitting down next to it. For the longest time I was having anomalous things happen when I was on the air...computer screens going dark, sound monitors in the control room turning themselves off, and the channel for the microphone turning itself off (usually while in the middle of speaking). It turns out I seem to have an inordinate amount of static electricity build-up in my body and simply waving my hand over the board that controls everything on air can turn off a channel.
For a while, it seemed that every time an alarm sounded at work (to indicate we were off air), it was my fault somehow. In fact, the head tech guy asked me one day if I had been in Newfoundland over the weekend (another province over where we have a sister station). I said no and asked him why. "Because the transmitter burned down", he said.
Over the years I have collected a number of these stories. Maybe they happen with the same frequency for other people but they don't take note of them. Maybe I just notice them because I see connections everywhere. And that is actually the point of this post, if you're still with me.
I have been contemplating doing a post on the "connectedness" of things. I can take almost any subject and find a way to relate it to myself. That's how I learn. but while researching "coincidence" and "synchronicity" I came across the Pauli Effect:
a tongue-in-cheek reference to the apparently mysterious failure of technical equipment in the presence of certain people, particularly theoretical physicists. It is named after the Austrian theoretical physicist Wolfgang Pauli. The Pauli effect was named after his(Wolfgang Pauli) bizarre ability to break experimental equipment simply by being in the vicinity. Pauli himself was aware of his reputation, and delighted whenever the Pauli effect manifested.(from Wikipedia).
OMG!! There's a name for it! The engine sounds disappearing in the presence of a mechanic or the channels and monitors turning themselves off but never in the presence of a tech guy (until finally one day when one happened to be standing right behind me). It's the Pauli Effect.
How excited was I to learn about this? Over the moon doesn't even come close. It happens to other people, too! I'm not an idiot! I'm not jinxed! I was thrilled to make this discovery for a couple of reasons. First, it meant that this phenomena is not the universe trying to get me. Second, it turns out that this guy Pauli became a patient and then friend of psychotherapist Carl Jung who's best known for his ideas of a collective unconscious and his theory of synchronicity.
Synchronicty! Aha! That's what I was looking for to begin with.
Coincidence is a noteworthy occurrence of two or more events or circumstances that don't have an obvious causal connection. For example, my co-worker Mary's birthday is February 28th. Her older sister Christine was a leap year baby. It would be more of a coincidence if they were both born on February 29th, but throughout their lives they have celebrated their birthdays together.
Synchronicity is also the occurrence of two or more events or circumstances that don't have an obvious causal connection, but they occur in a meaningful manner. My co-worker's sister, Christine, gave birth last week on February 29th! A leap year baby having a leap year baby! It's not unusual for women to give birth on their birthday, but to give birth on a birthday that only happens once every four years is...synchronous.
Over the years I have experienced this type of synchronicity many times. At university during my first year (1980), one of my biology lab partners was Grant, who hailed from Ontario, halfway across the country. I haven't seen him since we graduated in '84, but I met his uncle in 1998. His uncle is my neurologist.
Shortly after I was diagnosed I was at the local office of the MS Society and noticed a picture on the wall of a guy who had just finished his term as Pres of the Atlantic Division of the MS Society (or Chairman or some such). He was the brother of a former boyfriend.
Even the events surrounding my diagnosis were rather synchronous...I've blogged about it before: The Monkey's Paw and Insert Horseshoe Here.
I meet a lot of people in my line of work. Actually, I talk to more people than I meet, but some I do eventually meet face to face. One woman I talked to just before Christmas and I hit it off on the phone, then through e-mail, and finally in person. Kathy just seemed like good people. Turns out, she and I had a person in common, another MSer I knew through MS activities and who Kathy knew through a bible study they both belong to. Kathy and I and our respective significant others (Jane and John[aka Wookie]) got together for dinner a couple of weeks ago. Turns out Jane and a friend of mine from university ( a gazillion years ago) worked together until a few years ago.
I attended a university with a rather significant and recognizable school ring. Almost every social occassion I attend there is someone else there with the same ring. We instantly have a connection (even if it's just the rash that sometimes pops up under it). And even if there's no one else with that ring at the event, someone always comments on it to tell me their son or daughter or dad went there.
Last week I began putting on paper, so to speak, my ideas about coincidence, and doing some research on the subject while Lost was on TV. That is one interconnected show. Everyone is connected to everyone else even before they ended up on the island together. I realized after last night's episode that this is what attracts me to the show in the first place, and what keeps me getting sucked back in every time I aver to never watch it again. I am waiting for the resolution of how and why everyone is connected. I really want to know.
And when discussing this show with a co-worker and my upcoming post about coincidence, he said that with technology moving at the speed it is, it's no wonder the world is getting smaller. More and more connections are being made, even if it is on the internet. Kind of like pen pals, only faster.
So what has all this to do with MS? Simple really. I'm looking for the connections we MSers have with each other. And to do that I blog, I volunteer with the MS Society, and I raise funds for research. I also take part in studies relating to this disease because I have GOT to know HOW this disease works. MS is not a magic trick I can figure out or a mechanical device I can learn about. It is an as yet unsolvable logic puzzle. And everything I read, write, or research leads me a little closer to understanding.
I don't know why I have MS but I know what to do with it. And I promise to only use this power for good.
There are at least 137 MS Bloggers out there actively discussing whatever suits their fancy. Below you will find many of these suspects....wait... I mean lovely blogger friends who happen to have multiple sclerosis.
Remember how I mentioned a group project was in the works? Well here it is. As the founder of the Carnival of MS Bloggers, I'd like your help in spreading the word, and in doing so we will strengthen the bonds of our own little Multiple Sclerosis Blogging Web (and share some linkie love with each other). If you are not an MS Blogger, but are a regular reader here, please feel free to help spread the word too.
Here's what you do:
- Copy the entirety of this post
- Create a new post and paste this content
- Visit 3 of the blogs listed below which you were unfamiliar
- Leave a comment on their blog encouraging them to participate
- Please add Brass and Ivory to your sidebar, if it's not already
9 Brand New MS Bloggers joined the blogosphere in 2008!!
New! Carole's MS Blog (Carole) 49
New! Great Mastications (Orla) 37
New! Movin' On with MS (Sammie) 26
New! Me, Myself and MS (Emma) 10
New! Being Ammey 8
New! Blogbuster (Daniel) 6
New! Etsy Crest (Shelby) 6
New! Serina's Blog 5
New! I'm Beating MS (Michael) 2
Most Prolific MS Blogger - so far in 2008!!
Jim's Deep Thoughts (Jim) 231
Top 10 Rather Prolific MS Bloggers - so far in 2008!!
A Stellarlife (Diane) 109
Multiple Synchronicities & Sclerosis (Merelyme) 90
Friday's Child 70
My Journey - Living Well with MS (Diana) 69
Sunshine and Moonlight (Kim) 65
The MonSter Ate My Branes! (Natalie) 65
Queen Mediocretia of Suburbia 60
Brass and Ivory (Lisa) 56
Brain Cheese (Linda) 52
Maybe I'm Just Lazy (Julie) 51
28 Moderately Prolific MS Bloggers - so far in 2008!!
Maggsbunny (Maggie) 48
Living with Multiple Sclerosis (TC) 47
MS My Way 43
Bugs, Bikes, Brains (Shauna) 39
Dancing with MS (Lazscott) 37
Trying to Catch My Breath 37
A Florida Journal (SwampAngel) 35
Now We Are Six (Tish) 33
Reality Check (Michael) 32
Access Denied (Herrad) 31
Multiple Sclerosis Blog (Charles of MSBpodcast.com) 30
MS Activist (NMSS) 29
Self-injecting Chinese Hamsters since 2007 27
Shirl's the Girl (Shirley) 27
Disabled Not Dead (Anne) 26
Life with MS (Trevis) 26
Living with MS (Blinders Off) 25
White Lightning Axiom - Redux (mdm) 25
Word Salads (Have Myelin?) 23
Danieldoo (Vivian) 22
Caregivingly Yours (Patrick) 20
Deo Volente (Lisa N) 20
Down the MS Path (Vicki) 19
Do You Have That in My Size? (Denise) 17
Jenn's Nook (Jenn) 17
Fingolimod and Me (Jeri) 16
Human Life Matters (Mark) 16
51 Mildly Prolific MS Bloggers - so far in 2008!!
A Life of Learning with MS 15
Behind Blue Eyes (Zee) 15
Katy and Mike's Adventure (Katy) 15
Living Life as a Snowflake (Sharon) 15
Mandatory Rest Period (Kim) 15
MS Maze (Mandy) 15
My Journey with MS (Christina) 15
The Multiple Sclerosis Companion (Pat) 15
'Tis Herself (Kell) 15
A Short in the Cord (Joan) 14
Blindbeard's MS Blog 14
Bubbie's Blog (Cathy) 14
One Crazy Chick (Chris) 14
Pat's Pond (Pat) 14
Rants and Musings (Cutter) 14
G and K's Mom 13
MS Toolkit 13
Newly Diagnosed with MS (Andrea) 13
One Life (Stephen) 13
MS Not Just a Diary (Doug) 12
Rayne's World (Jayme) 12
Chaos Personified 11
My MS Journal (Jaime) 11
Purely Patsy (14 yr old Patsy) 11
Victoria Plum - Technician! (Victoria) 11
26 Less Prolific MS Bloggers - so far in 2008!!
Broken Clay (Katja) 10
Mark Pickup (Mark) 10
My Chain Driven Ride through Life in Alaska (Michelle) 10
Deborah Does Navel-Gazing (Deb) 9
Funky Mango's Musings 9
Inside the Mind of a Squirrel 9
Living Well with MS (Michon) 9
No Time for MS (Courtney) 9
Sorting It All Out (Michael) 9
Travels With Lucy (Virginia) 9
MS Caregivers (Prudence) 8
Can You Hear Me Now? (Donna) 7
Irreverence is Justified 7
Multiple Sclerosis Notes 7
My Tysabri Diary (Lauren) 7
Chris Has MS (Chris) 6
Diary of MS X (7 Divas) 5
Electrical Disturbance (Stephan) 5
Know Multiple Sclerosis 5
MS in the OC (Frank) 5
MS News and Notes (Deb) 5
MS Recovery Diet Blog (Ann) 5
The Endomorph (Ruth) 5
The Jaws of My Life (Jaws) 5
Time to Deal with MS (Homer) 5
YodaMamma MS & More 5
38 Barely Prolific MS Bloggers - so far in 2008!!
Some of these folks have multiple blogs or co-blog and are loved none-the-less!! Let's help spread the love and let them know that WE know they are appreciated.
Carolyne's MS Odyssey (Carolyne) 4
Defeating Illness (Chris) 4
Intent, Context, Perception (Chris) 4
Libbi's MS Journey (Libbi) 4
MS Recovery Diet Blog (Judi) 4
My Autoimmune Life 4
The Life & Times of Sancho Knotwise (JM) 4
The Zen Pretzel Trick (Zen Angel) 4
When it's Raining... (Keeley) 4
Kebenaran - The Truth 3
Montana Homecoming (Sister Jane) 3
Ms Quill 3
Reality Chick (Keli) 3
Catch My Disease (Lisle) 2
Clods and Pebbles 2
Georgia MS Advocates 2
Lazy Dog Public House 2
Looking Forward with MS (Pamela) 2
Surviving MS in Alaska (Michelle) 2
These Pretzels Are Making Me Thirsty (Trrish) 2
Troy's Multiple Sclerosis Experience 2
You Me and MS (Judi) 2
Camille's MSadventures 1
Comment Column (Virginia) 1
Erik's MS & Lyme Blog 1
Hop Bloody Hop (Philip) 1
Jenn's Journey with MS (Jenn) 1
Living with MS (Cyndee) 1
Mismorphic's World of MS 1
MS Musings 1
MS Real Life Stories & Issues (Kristin) 1
Postcards of My Life (Sherry) 1
Rebooting Times 1
Shoester (Doug) 1
The BS of My MS (Heather) 1
The Perseverant Pincushion (Trish) 1
Tysabri Help (Deej) 1
Having too many items from various posters to count:
LJ Users with Multiple Sclerosis
And finally - 26 MS Bloggers who have been silent in 2008!!
Angst on a Shoestring (Gina)
Dandelion Wine (Lynx)
Doug's MS Journal (Doug)
Imagine Bliss Butterfly (Suzy)
It's Not All in My Head (Optimist)
Just Above the Abyss (Heidi)
Life with MS , seeking a cure (Karyl)
Managing MS with Tai Chi (Joel)
Managing Multiple Sclerosis
MS - My Scene (Virginia)
My Complications (Amanda)
My Demyelination (Tina)
My MS Experience
Object of My Injection (Michelle)
Say It Isn't So (Mouse)
Talk Story with Kimberly
The Great NetXperiment
To Be Continued... (Jaime)
Truth and Beauty (Baraka)
Tryin' to Imagine Bliss (Suzy)
What is MS to Me (Dave)
Willy's MS Rants
Wind Among the Reeds
Hard to categorize:
I Have MS (Tim)
Huggins' MS Pages (James)
MS - A Personal Account
MS Protocols (Jeff)
Multiple Sclerosis Blog and News
Multiple Sclerosis Sucks
OUCH! It's a Disability Thing
Squiffy's House of Fun
Thursday, March 6, 2008
Two years ago, my hunk of hugs, John, sometimes referred to as Wookie (which is another post sometime), said he wanted to do the MS Bike Tour. It has varied in length over the years but is a minimum 100 kilometres (about 60 miles) over two days. It has an optional 60 more k as well for the masochists out there.
So John began training and I bought myself a mountain bike to train with him. Not being very athletic, ever, but keen on encouraging the man and getting myself outside and in better shape, I joined him. Almost before the bike tour I had decided to do the next one which was in 2007. So I continued to train and bought a hybrid bike as the mountain bike isn't suitable for the road. And I did the tour last summer.
Because of where I live, weather is not really the greatest for riding this time of year and we will undoubtedly have a couple more storms before Mother's Day (sometimes after!); but I'm itching to get outside again. I dug out the bike over the weekend and set off today to get myself warmed up. The mountain bike is good to train on for short distances and is wonderful in the woodsy trails. I was out riding for about a half hour and enlisted some locals to take a pic.
In the background is the town of Bedford, where I live, and the historic Bedford Basin where the convoys prepared to head overseas during world War 2. I often bike all the way around and back in the spring and summer as there is a great training road with all kinds of hills (yech). It's a great way to measure my progress as it takes fewer stops to get up those hills each time I bike it.
It's a start...
Wednesday, March 5, 2008
I have some really cool listeners, you know? One of them has a little too much time on her hands and has now got me hooked on Cranky Baby. the child will be visiting me at work sometime and will even join me on my training for the Bike Tour (which begins in earnest very soon). Enjoy the video. Here's the link.
Sunday, March 2, 2008
The ideas that have lighted my way have been kindness, beauty and truth. - Albert Einstein
Last weekend afforded me to observe some medical personnel in my community. I only wish everyone's experiences were as positive as my own.
After going without food and very little to drink for almost 24 hours, I was dehydrated and that made getting blood quite difficult. After scanning and searching for an appropriate vein for at least 10 minutes, the nurse told me she wanted to get another to do the procedure as she didn't want to put me through too much. The other nurse managed to do it on the second try. I was very happy with the first nurse's decision to hand off to someone with more experience.
At the women's hospital I went to after that, the med student participated in my internal exam. He got the speculum in but couldn't see well enough to get the swab where the doctor wanted it from. He stood up and let the doc sit down to do that part of the procedure. The student stood next to me and said he didn't want to put me through too much and rather than poke around looking for something let the doc do it.
The doc had also asked me about when my last pap was. She said if I was due for one she could do it at the same time as her exam rather than me having to go through it again in my family doc's office. Nice.
When talking to my family doc about my health last year, I told her about all the biking I was doing and my frustration with the lack of weight loss I was experiencing. Yeah, I know all about muscle mass etc....and my shape was a little bit different because of it. But all my clothes still fit. I wanted to get into a smaller size. My doc empathized as she was trying to "remodel" as well. A little bit of sharing, on her part, went a long way to making me feel better about myself.
I have blogged about the wonderful care I received when I was first diagnosed and hospitalized. Even the housekeeping staff who made me laugh. I really can't count the number of kindnesses I received. And I haven't yet told you of the staff at the MS clinic.
I read med blogs on a regular basis and am amazed at some of the docs and nurses who are surprised at patients thanking them for their care. To them and others in the field, I say thank you for your care and your compassion.... and for laughing at my jokes.
Saturday, March 1, 2008
There was a woman I went to university with who was one of the sweetest people I have ever met. She was kind, empathetic, funny, and always willing to help you with whatever was in her ability to do. She also had the worst luck of anyone I have ever met. If something could go wrong for Liz, it did. She was working really hard to put herslef through school (engineering no less) and in her second year of a 3 year program she became sick and ended up missing a lot of class time. As a result, she had to do a make-up year, so to speak. She buckled down to do just that, though financially it was difficult. Her parents had little extra money, so she was her only source for dollars. At Christmas time in her third year, her father, a travelling salesman who was also deaf, was attacked in a hotel elevator, beaten with a pipe and left for dead. (I had met the man the year before when he was passing through town and came to dinner with Liz one night in the cafeteria of our residence. He was a small, quiet man, who nodded politely at everyone as we raised our voices so he could hear us. The police believe the animals who attacked him had probably approached him from behind,said something to him and not hearing them, he didn't respond.) He ended up in a coma for a short time before finally succumbing to his injuries. As far as I know, in the 20 some years since that happened no one was ever caught for that crime. Liz came back to school again. A couple of months go by and Liz develops some sort of rash that a doctor diagnoses as scabies. She spends a couple of hundred dollars (that she can ill afford) on washing everything she owns and applying whatever ointment the doc prescribes and recovers. A month later it's back. She sees her regular doc (who had been away when the rash initially started) and is told it's not scabies, but some other exzema type illness that will get better on its own. And it did. She was in my room one day when I received a call at the pay phone down the hall. I was out for a couple of minutes and left Liz in my room. When I returned, she said, "I fixed your candle for you. It was going to burn right over the edge". I had been given a candle that came with instructions on how to shape the edges so it would burn down in a specific pattern and I had been patiently shaping it for several hours. There was no way I could tell Liz that she shouldn't have done that. I just thanked her for her attention. Liz eventually graduated with her engineering diploma and though I lost track of her for 20 years or so, I did learn she went on to get her degree and obtain employment as an engineer.
The entire time I knew Liz, even through the darkest days, she maintained a niceness about her, an empathy for any who were going through a rough patch, and an easy laugh and really cute giggle. We all saw her weep at the news of her father, but then buck up after that incident and carry on. We saw her frustrartion at the scabies incident, but again, we observed her carry on. She never once had the attitude of "poor me". She never once said, "Why me". Those of us who knew her all said those things for her, but never to her.
Liz did not ignore the truth of the crap she went through. When told she had scabies, she said she had visited relatives one weekend who had a farm so it was within the realm of possiblities for her to have picked up the little buggers. When asked about her father's hospitalization and subsequent death, she told us she was angry and sad, but she said, I have to do what I can for my mother and little sister now, and that means finishing school. She fixed on the best possible outcome and strove for it.
Liz never focussed on the bad things that happened to her. She always had hope for whatever was going to happen. And that is what I try to do as well (though I have a post bubbling at the surface as to how I seem to attract negative electronic events in my life) with my MS. People who hear me speak about MS at fundraisers or just one on one, know that I tell the inconvenient truth (sorry, Al) that while I look great today and appear to have all my physical and mental faculties, the disability of MS lurks in the background every day of my life. A specific drug may be helping me to achieve what I accomplish, but so do the little (and big) naps and rests I frequently take. So does eating a relatively balanced diet and all the little treats I allow myself (good for the mental health). So does not beating myself up for perceived failures like a divorce or bad relationships, or for forgetting my shopping bags when I go to the grocery store. There are many things I do to maintain my current status. Is putting hope in the mix part of it? Yes, indeed, because I hope for a future without MS. It doesn't appear that it will be in my life time, but I strive for the future anyway.
Most of this post has been fuelled by a recent posting of Lisa's on Brass and Ivory about PR campaigns for MS drugs. I have nothing against PR campaigns in general, or PR companies. I'm in the PR business myself. What I want is transparency. When I speak to groups about my experiences I tell them who I am, who my employer is, and the good and bad of my experiences. It's the truth. And isn't that what we need?