MS Bike Tour - Part One

I haven't written about the MS Bike Tour yet. I have been thinking about where to start. For the past nine years I have been going to the bike tour, 7 times as a volunteer flagger, rest stop attendant, support vehicle driver, or aide to the Halifax club HAM radio operators who do communications. One year I was only able to attend the finish line for a short period to cheer on the bikers. Never did I think I could do what these athletes do. And not because of having MS, but simply because I haven't been physically active for years. Last year my boyfriend (who I also have neglected to write about so far, but will) declared his intention to cycle. I had a 3 month trial at the local Nubody's Gym so offered to get myself in better shape, get a bike, and bike with him to help him train.

Little did I know that the simple purchase of a mountain bike would get me more active than I had ever been in my life. Pretty soon I was out on that bike as much as I could be, racing down rock strewn hills, splashing through every single puddle I could find, and eventually having a few falls. Ooooo! Battle scars!

So John did the Bike Tour as a participant, raising over 5 grand in 2006. I was already signed up for the event for 2007 also as a participant. Over the winter I bought a hybrid and had it set up in my room on a trainer so I could ride it. By March I was so anxious to get on the road, I braved the chilly weather and got outside. John and I trained together on weekends by riding some of the longer trails around the city(20-30 k) and during the week I did shorter jaunts within my neighbourhood, especially some pretty rough hills (10-15k).

A week before the Tour we did a 45 k ride. And I knew I could do the bike tour.

When the temperature hits 20 degrees, I start to slow down. I try to keep cool in order to function as a human being and not a land snail. I have a cool pack I wear in my helmet to keep my head cool, and a neck cooler as well, plus a well stocked camel back pack.

Day 1 of the Tour started at 6 AM for me. Up early to load the car and head to Windsor. Unload, sign up, say hi to folks I haven't seen for a year, and then on the road at 8. The official starts are between 9 and 10, but there was no way I'd be able to bike during the noon hour on what would be the hottest day of the summer.

I made a lot of stops along the way, at least half the 400 plus riders passing me, but that was what I had planned. I had 20 some other teammates who knew I was on the road early, as well as staff from the MS Society, and all the HAM radio folks looking out for me. I drank 3 litres of water between 8 and 12:15 when I finally rolled in to Acadia University.

I will continue this post at a later time and tell you about Day 2. But know that this event was probably one of the most uplifting of my life. The camraderie of the cyclists is wonderful, with folks cheering you on along the way, the support vehicles and rest stops manned by fantastic volunteers who will look after you no matter what - it is, quite simply, an amazing experience.

So when are you signing up for 2008?

S.

Insert Horseshoe Here

For the past couple of years I have been speaking to the Occupational Therapy students at Dalhousie University about living with MS. I truly enjoy these speaking engagements as I am not afraid to speak publicly about an illness that has for long time been kept out of the public eye. (The reasons for that are many and will be the subject of another post.) I am eager to share my experiences as these folks may be part of my care taking team at some point. And for these students to have a face to put with the disease makes more of an impact than to just read about it in the text books, not to mention the fact that as time goes on, we are discovering more things about MS that need to be in those texts.

One of the main points I try to stress when speaking with these students, or any group really, is how lucky I am.

Some folks may say that I am blessed with a guardian angel or that the planets and stars aligned at the right time. Some may say that fate had already decided my (mis)fortunes. I say I've got a horseshoe up my butt.

1. I know my body and I know when things are going wonky. I wasn't running to the doctor for minor aches and pains and things that could be discussed at my annual "well woman check-up" (code for Pap smear).

2. I had (and still have) one of the best family docs in the world who had come to know me over the years and trust me. Having your family doc trust you is just as important as trusting in her.

3. My family doc studied under Dr. Murray when he was heading up the MS Clinic here in Halifax.

4. My family doc has someone close to her who also has MS.

5. My initial symptoms were deemed emergent enough that I was seen in the emergency department after my family doc phoned to say I was coming in and to get the neurologist ready.

6. After a consult with the neurologist and an MRI, I was given a diagnosis. The neuro was also affiliated with the MS Clinic and was recruiting possible MS patients for drug studies.

7. I have a curious mind. I want to know how things work, especially where biological functions are concerned. I agreed to participate in the drug study.

8. I have a naturally positive outlook on things. Poop happens. Deal with it.

I am lucky that things happened the way they did. Some folks wait years before a diagnosis and as a result miss out on a window of opportunity to treat the disease early and possibly prevent worsening of symptoms. I was diagnosed very quickly.
I am lucky I live in a city that has the equipment and experts to diagnose.
I am lucky I fit a profile with a prevalence of MS.
I am lucky I am on a drug (paid for by the provincial government) that is probably a big part of why I don't look like the poster child for MS.

Horseshoe up my butt? You bet.

S.

Turn Over That Beetle

Scientists have revealed a fossil of a giant bug. It was 2.5 metres long and technically not a bug but an arachnid, a sea scorpion. A scorpion over 7 feet long! It got me thinking about Franz Kafka's The Metamorphosis. I read the novella in grade school, absolutely fascinated and horrified at the same time. I wondered what it would be like to be stuck on my back,like George, unable to turn myself over, legs waving in the air. Not being able to rescue myself, it would be certain death. What horrified me was not the sense of impending doom, but that George's family did little to help him. Oh, they tried at first, but eventually, they all but gave up on him.

I know the story has had many interpretations over the years and by scholars much more educated about such things than myself, but this story has always stuck with me because of the message I got from it. Help those who need it. Help those who are weaker. (I think Dr. Milner would be proud of me for that- read his book; it's quite funny.) Since reading that story over 30 years ago, every beetle that I have encountered stuck upside down, legs waving in the air, I have righted.

Now, to define weaker. A mom with frayed nerves and toddlers at the store who may be about to lose it. A teacher who needs extra hands at school for extracurricular activities. The food bank that needs a few more tins of soup. The young woman at the nursing home, whose life was drastically altered by progressive MS, and can no longer go out for company.

Those of us who are stronger need to look after those who are weaker. I challenge anyone to consider themselves stronger, to look for a way to help those who are weaker.

On a related note, burnout for caretakers and volunteers is all too real. Even strong people need a break, too. As in Kafka's tale, caretakers can build up resentment if their needs aren't looked after and it's not good for the caretaker or the caretakee.

Turn over that beetle.

S.

Meeting Dr. Penfield

From the time I was a child, until I hit 16 I wanted to be a medical doctor(and a geologist and archaeologist for a time). I read everything I could about doctors and nurses and anything medical. By the time I was 10 I had read my mother's St. John Ambulance First Aid book so many times I could have delivered a baby on my own. I started Grade 5 at Wilder Penfield Elementary School in Montreal and was then enamored with brain surgery.

Dr. Penfield would pay the school an ocassional visit and we would have school assemblies on those days. The first one I attended, I was first out the classroom door and running to the gym to sit at the man's feet on the gym floor.
There was a single chair at the head of the gym and I was right there, sitting cross-legged in front of that chair. I honestly didn't understand why there wasn't a stampede to get to what I thought would be the best seat in the house.
Oh my God, there he was...the greatest brain surgeon in the history of the world. He reminded me of my grandfather. And I was fascinated with his stories about being a medical student and in particular the stories he told about studying monkeys' behaviour. He really seemed to relish this chance to have kids gathered around and to entertain them. More so now did he remind me of my grandfather.

But I was also disappointed. He told us nothing of his pioneering surgeries, his poking and prodding of peoples' brains, or even his days during the Great War. I hoped he would have more to tell on his next visit.

Of course, he didn't. Not for elementary aged students. Two years after that first assembly, Dr. Penfield passed away. We were living in Newfoundland by that time and I recall reading the paper days after he died. I felt a profound sadness that I would never learn the things he learned about the human brain.

My mother, at the time, was taking some classes at Memorial University. When she wasn't studying, I would pour over her psychology texts. How fascinating! And by the time I was 16, the drive to become a doctor had waned, though my interest in anything medical continued. When I first started university (St. F. X.), I was thinking about marine biology as a future, but after a year of psychology, I was hooked on that.

Despite working in radio, I have maintained my interests in psychology and medicine (and geology and archaeology). Good thing, too. After a diagnosis of MS, you almost need an MD to decipher the information out there about this disease.

S.

God is an Iron

With thanks to Spider Robinson for allowing me to borrow (steal) his title....

Many many years ago, a friend (George) at university introduced me to the writings of Spider Robinson. The man is very funny and insightful and punny. Makes for a very good combination. So I enjoyed everything he wrote. Then I read Mindkiller. First of all, it was about a society that was addicted to "Wiring", plugging a wire from an individual's head to a wall outlet that provided electrical stimulation of the pleasure centre of the brain. Woo hoo! Electrical stimulation of the brain! Very nifty stuff and a topic that is still being explored for treatments of all sorts of nasty neurological conditions and a subject of which I have immense interest.
Secondly, it was, or half of it was, set in Halifax. Cool.
Thirdly, I knew a little about the topic and was majoring in psychology. It was like this guy had written this book for me. I had also read Michael Crichton's The Terminal Man and loved that.
The second chapter of Mindkiller had actually been included in an anthology of short stories. The story was called God is an Iron.
When I first saw this title I thought "iron:anvil". Then I thought "iron:something to remove wrinkles". But God is an anvil or God removes wrinkles didn't make a lot of sense to me. So I decided to read the story to find out what it meant. And boy, was Spider right. God is THE master of irony.

All this is to simply set up how I found out I had MS.

In January, 1998, my (ex)husband and I went on vacation to Quebec City. During the height of the big ice storm, no less. I wanted to go to St. Ann de Beaupre to send my grandmother a postcard from there. If you are Catholic you probably know about the place. It is a shrine to Saint Anne, the mother of Mary, grandmother of Jesus. People have been going there on pilgrammages for ages to seek relief from physical ailments and afflictions. My grandmother had been there in 1939 (she had polio as a child that left her lame). I knew she'd appreciate that we had made a stop there.

The church that is there is really a gorgeous piece of work. We went into the church and were the only ones. We walked around, admiring the structure, the tiles, and amazed at the number of crutches, canes, and orthotics that were tacked to the front pillars, left behind by people who had been "miraculously" cured.

The next day, as I was brushing my hair, my right arm felt kind of weak. And I was tripping over my right foot.; I was having trouble holding my toothbrush and even writing. We returned to Halifax and I went back to work, but went to see my family doc about the increasing weakness. She told me to come back if it got any worse and she would try to get me in to see someone. Two days later I was back in her office and she was on the phone to a colleague who saw me at the hospital that aftrnoon. At 5:45 that evening the neurologist was telling me I had MS. A couple of hours later, I was telling my parents that it was a little ironic that my symptoms began the day after I had visited St. Anne de Beaupre. And that's when it hit me.: God really IS an iron.

My gandmother received the postcard and just loved it. But the entire family was sworn to keep from her my diagnosis. She passed away a year and a half later and I like to think she passed into heaven dancing a Sottish jig and then, upon discovering I had MS, giving God a piece of her mind about that. My grandmother had a wonderful sense of humour, but I doubt she would have appreciated the irony. I went to St. Anne de Beaupre and got afflicted.

S.

Blue mud daubers

I sent off an e-mail to the Museum of Natural History in Halifax asking advice on how to keep my gang of blue mud daubers alive and growing until the spring. They are currently in a small jar in my fridge with some cotton batting and a few drops of water and a small hole in the lid.....
I'm hoping to be foster mom to three wasps when it warms up. Can't wait to tell my mom that I'm finally having kids....

S.

There has to be an easier way to make biscuits....

My parents are a source of on air material for me. They are very funny people and some of their experiences are amusing to relate here as well.

About 13 or so years ago, my father, an electrical engineer for all his working life, decided he needed to learn how to cook. And bake. And generally be able to look after himself when my mother was away. At the beginning of this new phase in his life he asked my mother to teach him how to make biscuits.

He had a pen and paper and wrote down the ingredients as she was making the biscuits.

A few weeks later he was ready to try them on his own. Mom was out, so he asked if I wanted to help. Hindsight is 20/20, as they say, and maybe I should have helped, but my father is also like a bull in a china shop, so I declined. After much banging around, Dad came out to the family room with a wide band of flour across the waist of his pants. He asked me what he was supposed to do with the waxed paper.

"The what?"

"The waxed paper. Your mother said something about waxed paper."

Dead silence, then, "I really don't know, Dad."

So off he went into the kitchen again....more banging around...until finally he came back and said, "The biscuits are in the oven, but I couldn't get the waxed paper out of them".

This truly intrigued me so I had to go check them out. Sure enough he had a pan of great looking biscuits baking in the oven with bits and pieces of waxed paper sticking out of them.

My father is of a rational and scientific mind. He is a very logical and linear thinker. My mother and I are both a little bit like that, but with a more creative way of thinking, so when Dad told us that "There has to be an easier way of making biscuits", she and I were truly confused. I mean, really, how difficult is it to make biscuits?

"Dad, where's your recipe?"

"On the fridge."

I take it down and try to read his chicken scratch. I want to go through the steps with him from the very beginning. "Dad, you read to me what you did."

"Well, I got three cups of flour, then I added-"

"Wait. you got a bowl, right? For the flour?"

"Bowl?"

Aha......

"How did you mix everything?"

"I had the waxed paper on the counter, put the flour on it, made a well- what are you laughing at?"

My mother and I are in hysterics at this point. You should probably know that my mother values easy clean up above almost anything else, so when she's baking or making pies she uses sheets of waxed paper , FLOURED first, to roll the dough. When she's done, the paper is rolled up and tossed. Easy.

My mother and I are both crying from laughing so hard, imagining my father mixing ingredients on a sheet of waxed paper without the benefit of a bowl. A hat tip to Dad for managing this feat, but it also explains that, as the ingredients mixed, the dough stuck to the waxed paper and it started to tear off in little pieces.

We had the biscuits with dinner that night, and while tasty, we did have to take little bits of waxed paper out of them.

"There has to be a better way to make biscuits" has become a catchphrase for our family ever since.

Last week I came across a website called Cooking for Engineers. It has easy to follow recipes with pictures to demonstrate the process. Curious, I looked up biscuits. And sure enough, in their recipe pictures for basic biscuits, a BOWL is front and centre.

S.

Blue Mud Dauber

In the early summer I noticed a huge blue-black thread waisted wasp hanging around the entrance to the building I live in. Not being an entymologist I had to do a little googling to find online what I was seeing. The closest I can come to identifying the bug was a blue mud dauber. I watched it almost everyday as remodelling was done to the mud on the door frame of the building. At first there were three holes, the next day only two, and on the third there was one. Where the mud condo was attached, I couldn't see onto the top of it. That's where mama wasp spent her time, perched. I figured she had put holes in the top to lay her eggs and the kiddies' meals. Once the weather turned cold I figured it was safe to take down to do a little inspection.

Hmmmm.....no holes! At all....everything was sealed up tight. Time to start deconsrtucting the mud condo.
Hmmmm.....again. There appears to be something in here....larva, perhaps. So I deconstuct some more....
and more...
and more...
until I can finally detect three larva. That's where I stopped and put everything into a jar. I'll take it to the museum on Tuesday to see about keeping it in the fridge until the spring. With a little luck that'll keep 'em .

More to follow.

This may not be the animal I think it is. The references to the blue mud dauber I came across indicated solitary larval cells were the norm and this one had three. Some more research is indicated.

Mud daubers

The A and W ruler I've had for about 38 years. Must have got it free with some sort of meal as a kid. Let's all go to A and W.....

S.

Strength

I had come across a line that rang true with me and saved for when I began my blog. Then I went looking for the source of it. It came from this lady's blog: http://www.tmjfriends.com/articles/after-the-cure/

Stacy was kind enough to let me quote her.

The line that so resonated with me?

Anyone who has ever gone through a serious illness has probably been told that they are “so strong,” when in fact, that strength has been mistaken for a patient’s need to not inflict any more emotional pain on those surrounding them.

Is my use of humor simply an attempt to make other people feel better? Or do I really just have an excellent sense of irony? I can also be quite sarcastic. Is that another defense mechanism? Or do I really just have an excellent sense of humor? Are my coping mechanisms deemed strength by other people? I certainly hope so.

Otherwise they'd be shocked to know how frightened I am sometimes. That would be a weakness. And most of us don't like others knowing our soft spots. The cat's out of the bag now though, isn't it?

S.

The Pain of MS

A couple of years ago I was asked to speak at an MS presentation of Pain and MS. Here is my talk.

The human body is a wonderful work of art, an efficient machine. Like a piece of art or a machine it also can be damaged or break down. When this happens, our bodies have ways of letting us know of an injury and letting us know when it is recuperating.

Pain is the body's way of signalling an injury. In the case of MS, pain indicates a problem in the central nervous system and is sometimes the body's way of telling us it's trying to get itself back to where it should be.

There is trigeminal neuralgia, which is a pain in your jaw that can be relieved, in some cases, by surgery, severing the nerve. There is L'Hermette's sign, that blast of lightning down your spine when you lower your head to your chest. I don't know what, if any, treatment there is for that one. In my case, it was first the itchy skin on half of my body, sometimes scratching my arm and leg 'til they bled. Then wanting to reach back in my throat with my fist to scratch an itch on the inside. Then the burning feeling on my skin that quickly turned to pain upon touch; a layer of clothing was sometimes too much to bear. A co-worker once put an arm around my shoulder and I almost screamed. Sex was out of the question...when half of your body doesn't want to be touched, including your genitals, there is no amount of K-Y jelly in the world that can make things bearable.

I didn't want people to stop touching me and I didn't want to go through any explanations about why, so I got a cane. People will give you a wide berth when they see you with a cane and that kept them away from the right side of my body. It was also protection from accidental bumps from shopping carts or crowds of people in shopping centres. After several weeks, the pain started to subside. Actually, I almost welcomed the pain as it indicated my body was trying to get back to its normal state. It was really too weird to touch the right side of my body and not feel it....when the pain began, it meant that I had feeling back again, such as it was.

The pain subsided after a few weeks, though the tingling remained for several months, slowly leaving my body from the centre outward, until all that was left was the occassional tingle in my toes or fingertips.

For me, MS is one of life's paradoxes. It has resulted in several missed days of work, frustration at being fatigued and having to be inconvenienced with juggling a normal day's schedule to accomodate my need to have a rest or two every day. However, it has provided an enormous learning experience, renewing my interest in neurology. As a result, all symptoms I have had, reveal a part of my brain and its function that I had been unaware of before. Much of what we know about the brain is through studying dysfunction. So, in a way, my having MS, and tracking symptoms, including pain, is advancing the study of the brain. To a student of science, there is nothing more exciting than to be a part of discovery.

Pain may indicate injury, but in this case, it also signalled recovery.

S.

Ants as Surgical Staples

One of my interests is bugs. More specifically, creepy crawlies. Insects, some arachnids, slithery things, some worms. These are fascinating creatures with a whole slew of interesting things to teach us if we watch closely enough.
Most of us are familiar with the use of maggots in cleaning out necrotic tissue from wounds or leeches used to prevent blood from coagulating during microsurgery. I was thinking about ants today and how I had seen a documentary years ago about the ants' jaws being used to close wounds in a jungle setting. Or I read about it. A quick search of the 'net and I found a reference to soldier ants. Hold one or more of those guys over a wound, let 'em clamp down on it, then twist off the body and the death grip of the jaws holds the wound closed. Cool. One of those little bits of survival trivia I'll remember if I'm ever lost in the Amazon forest and I cut some part of my body and I don't have a surgical kit with me.

http://en.wikipedia.org/wiki/Surgical_staple

S.

Intro

Hey there!

Welcome to my attempt at entering the 21st century. The name of the blog tells you what interests me, though not in that order and the subjects certainly aren't exclusive.

I rode my first MS Bike Tour this summer! One of my proudest moments, not being an athlete. More on that later.

S.