Losing a Mind is a Terrible Thing to Wait For

I'm losing my mind, and I have proof. I took part in a small study this summer that involved 3 hours of cognitive testing and two hours in an MRI machine. Two groups of women were matched for age and education levels, were tested and MRI-ed. One of the groups was made up of relapsing remitting MSers; that was my group. There was a significant difference found between the two groups: the MSer's response time to the testing was slower than the non MSers. As well, there were differences in size of certain parts of the brain; the MSer's parts were smaller. To put this in perspective, response times were measured in thousandths of seconds. So a difference between .600 seconds and .700 seconds (a tenth of a second) is really small in the grander scale of things. But the differences were still significant. I am losing my mind but at a fairly slow rate. This is a simplified version of the results of the study and keep in mind that it was a small sample size.

There are a number of components to brain function. Two of the main components are electrical and chemical. What we eat or ingest will affect those two components. Not enough sleep will affect those two components. In fact, anything we do or don't do will affect those two components, either positively or negatively. Whatever you do to or with your body will affect your brain, because it responds to the electrical and chemical activity of the body.
So somehow a microbe or lack of Vitamin D (or the alignment of the stars) affects your body. Your body and brain respond to that. If you're like me, your body starts to destroy the myelin in your brain. That one response causes more responses. Initially, I lost the use of the right side of my body for a short time and lost the feeling for a longer time. So as the myelin was being eaten away, which is an injury, an inflammatory process was under way. (The same thing happens if you get a bug bite. There's a slight inflammation at the site of injury, which is chemically induced.) Then a repair process begins and scar tissue forms.(Just like a bug bite) The scar that remains might be enough to allow complete or near-complete recovery, but like a repaired electrical cord, may not be as efficient as the original.

So what does this mean for cognitive ability? Think about all the chemical reactions going on inside your brain during an MS attack. And your neurons are firing but getting no results from your body. Maybe your fatigue is keeping you on the couch instead of going to the gym. Maybe you don't have the energy to prepare a decent meal. Maybe you can't focus your mind enough on a crossword puzzle. All these things contribute to declining cognitive ability.

And now we can show evidence of brain atrophy in people with MS.

As with many things in science, one discovery leads to more questions. Is it the disease that causes the atrophy or is it a byproduct of the disease? If we're not eating, sleeping, or exercising as we should, is that causing the atrophy? It may be a vicious circle as well. The question we can answer at the moment is "What can we do now to minimize the damage?"

The answer is right in front of us: Eat right, sleep well, exercise your body and your mind, and find some coping mechanisms to handle the "brain farts". In my case, at work, I write down everything I need to speak about when on air. They are just short notes with info that's relevant, but it gets the job done. I cross them out when I've used them so I don't lose my place. I have grocery lists that are great (when I remember to take them with me) and I sometimes make up to do lists. I leave things on the floor in front of the door so I remember to take them with me.

Eating, sleeping, and exercising are going to be future blog posts. Especially since two of the three are favourite activities of mine.

S.

The Dating Game

The dating scene is tough enough for most of us. Add to that a diagnosis of MS (or any chronic illness for that matter) and it can be a little more than discouraging.

About 5 years ago, I began online dating. Honestly, I had a blast. I met some incredible jerks and some really great guys and I had some of the funniest dating stories to share with friends. It was never an issue for me to tell my dates that I had MS, most of them, anyway. It does not define me, but where I am so involved in fundraising for the MS Society and making public appearances for the cause, it is extremely important to me.

On your online profile you are supposed to indicate hair and eye colour, body type or size, likes, dislikes, etc. If you are on a disabled online dating site, you may be asked to disclose your disability.

But what if your disability or condition isn't quite so obvious? Like with MS. Many of us are not disabled and I couldn't in good conscience join one of those sites. So do you say on your profile that you have MS? Or is that akin to saying you have three heads? If I read a guy's profile and it said he had kids under the age of 18, I immediately crossed him off the list (I was not interested in dating someone with kids that young). Should I hold it against someone who would immediately cross me off his list after having read I have MS?

I did not indicate on my profile that I have MS. But it would be brought up in either online conversation or on our first meeting. Nobody ran away screaming, but a few guys were put off right away. Such is life. Some guys confused MS with MD. Some guys appeared not to be concerned about it, and that bothered me. Of all the guys I dated only one has become an actual friend. And one has become more than a friend

John clicked with me from almost the very beginning. He had a friend with MS and his mom was a neuro nurse. He has since become the love of my life. And he gives me a shot in my backside every week. (That reminds me...I'll have to write a post soon about the medication I take for the MS)

I guess the reason for writing this is to show that you can have a social life with MS. Choosing to have a social life may be the hardest part.

S.

Waiting...

I am on day 4 without a voice. Laryngitis has kept me from work and kept me from communicating. Today I sound like Rod Stewart....which isn't bad for Rod, but not good for a female radio announcer. I'm trying to rest, drink lots of fluids, eat lots of soup (gotta get my veggies), and waiting for the voice to come back.

I've had laryngitis a couple of times before. The last time the voice came back after a day. A few months after my diagnosis, I had a different kind of voice problem, though. I listened to myself on a tape and realized I sounded like I wanted to jump off the nearest bridge. I had no intonation, no expression. The voice was a monotone and I could have just won the lottery but sounded like a robot. No matter how hard I tried to put some expression in my voice it would not happen. I phoned the boss, saying I sounded like crap and that I should probably take a little time off (I was also extremely tired at the time, just coming down from my steroid treatment).

This was my first inkling that MS could affect my career. Every morning for several days, when I woke up, I'd read something aloud to see if the expression was coming back. And it did after about 5 days, but before that I wasn't really worried. I was able to write again after my initial attack, why wouldn't my voice come back?

I know now that anything I lose, could be permanent. With each MS attack, more damage is done, and it can be forever. Just look at the scars you have on your body. The appendectomy when you were a teen, the mark on your knee from the tree you fell from as a child, the chicken pox marks left over. It's the same in your brain. Myelin is destroyed, then repaired (if you're lucky), and voila! A scar remains. Sometimes the repair is sufficient to restore function, but sometimes it isn't. And the scar reduces the efficiency of nerve conduction. Or it could completely block nerve conduction, which may be forever. Or not. That's the stupid thing about MS. I met a woman several years ago whose husband began to regain sight after being legally blind for 13 years.

When you lose something to MS, it's always a wait and see approach you have to take. But how long do you wait for your legs to come back, your bladder, your sight? Your voice?

S.

Don't Ask, Don't Tell

Imagine you are living your life the way you think it should be lived. Perhaps you're married, with a child or two, your career is going fine. Maybe you run 3 or 4 times a week. You serve on a board for a charitable group. You volunteer as a scout leader. You sometimes eat too much, maybe have a cigar once in a while, or watch fluff on TV. Normal life.

One day, you trip over seemingly nothing. A day or two later, your fingers let things slide to the floor. You shake it off. God, but you're tired. A few months later, your legs completely go out from under you. Now you get to the doctor.

The doc does some tests and tells you it's MS. Do you tell anyone? Maybe you take a few days off from work. Your legs come back to you and you carry on as normal, but you know you are anything but normal. How do you tell people you have MS? You look normal.

Everyone decides at some point to tell some people and not others. Perhaps you tell your wife, but hide it from the kids. Maybe your best friend, but not your parents. Maybe you tell everyone. The reasons for keeping it to yourself or telling others are as varied as the number of people with MS. David Lander, Squiggy on Laverne and Shirley, told no one outside of his family for almost 20 years. He knew there were rumours circulating that he had a drinking problem, because he walked like a drunk. But he would rather people think he was a drunk than that he might have a disability. He was fearful that he wouldn't get work as an actor. (Read his book)

Many people fear losing their job or the medical insurance they receive with their job. Let's face it, it's expensive to be disabled. And it can be lonely as well. The disabled have a harder time getting around and sometimes a spur of the moment trip for a coffee with friends just can't happen. If you need assistance getting dressed and out of the house, then having to arrange transportation for yourself and a wheelchair or scooter, you need to be organized and have plans made well in advance. You can't just pop out for a cup of joe. As a result, if you are not working, your social life can become pretty thin. Even if you are working, a social life can still be difficult. Fatigue can make you want to lie down in the middle of the grocery store to rest. So if you're going out after work, you really have to calculate your energy levels.

And when you tell people you have MS, you have to deal with their insecurities as well as your own. Some people don't know how to handle it. That's fine actually, because you may still be learning to handle it yourself, and if they're good people they'll want you to help each other. Some of those people, though, might decide to distance themselves from you beause they're too afraid.

Do you tell your folks? Depends on your folks of course and again, like friends, some handle it better than others. Some folks and family members rally around and join support groups and do the walks and raise money. They take action. Others wait to be asked for help. Others completely ignore the fact.

And some people bury their head in the sand and ignore it for as long as they can.

Personally, I never understood not telling people, until I'd had MS for a few months. And I couldn't understand not researching the disease. But the more I knew about it, the more I understood why some people keep it to themselves. I don't tell everyone I meet that I have MS, but it's not a secret either. I've mentioned it in passing a few times on the air when I've talked about the upcoming MS Walk or the Bike Tour and since I am the go-to person for local media outlets when they need a soundbite or person with MS to comment on a new study, I am no stranger to either the papers or TV.

Some folks feel the need to keep their diagnosis to themselves. I cannot. There's too much that needs to be done for me to keep quiet.

S.

The Monkey's Paw

So another story I read as a child was The Monkey's Paw. You can find a hard copy in almost any anthology of gothic short stories. The author, W.W. Jacobs, wrote a number of sea tales which are humourous, pleasant stories of the life of sailors. The Monkey's Paw is a drastic change from those "nice" stories.

If you haven't read it, do so. If you don't want to, here's a summary. A couple in England, late 1800s entertain a British soldier one evening. As they sit around the fire after supper, the visitor removes a monkey's paw from his pocket, a souvenir from his time in India with the British Army, and throws it on the fire. He explains that it was given to him and he was told to make 3 wishes. The husband resuces the paw from the fire, though the visitor advises him not to do so.

After the visitor leaves, the couple wish for some money. The next day, a man from an insurance company comes to them with news that their son was horribly disfigured and subsequently died the night before at an accident at the factory where he worked. He gives them a compensation cheque.

The story becomes more horrific and downright scary, but the main idea is that you should be careful what you wish for.

That message has stayed with me since I read the story in elementary school. And for most of my life I have been careful about what I wished for. Until 10 or 11 years ago. In my "Horseshoe" post, I mentioned Dr. Murray. He is currently one of "my" neurologists. But even before I had met him, I had heard of him. He was an X grad, he guest-lectured often about medical subjects, and his hobbies included diagnosing the illnesses of historical figures based on accounts of their lives and behaviours. Very cool stuff as far as I was concerned. I met a friend for lunch one day, only to discover he was doing some work for Dr. Murray. "That must be so interesting," I was very excited for Charles to be working for Dr. Murray. "I'd like to meet him sometime'" I told Charles.

A few months later, I met a woman, Roxy, who was Dr. Murray's secretary at the Department of Humanities at Dal. Again, I was thrilled. And I told Roxy, "I'd like to meet him."

4 months later, a week after my diagnosis, I was sitting in the MS Clinic in a johnny shirt shaking the hand of the man I had wished to meet.

S.

Bugs Among Us

A study was released this week detailing the number of creatures living in and on us as humans. (And I can't seem to find the link right now) It's more than we thought. Which is no surprise to me. I've been aware of the presence of these helpful organisms for a long time. I've been aware of the presence of the unhelpful ones almost as long. Basically, your bugs should stay your bugs. My folks and I joke that if we have an upset stomach or intestinal distress, it's because we ate someone else's E.Coli. Whether or not that's the case, a point is made: there are bugs in us and on us.

The bugs we have in our gut have important jobs to do. They help us digest our food. They help us stay healthy and fight off illness. They sometimes make things difficult for the not so helpful bugs and protect us from the "evil" ones.

But it's the bad ones that interest me. Tapeworms, hookworms, and the parasite that causes malaria, transmitted through the saliva of a mosquito. How these animals evolved into what they are now is what researchers are examining now. Any parasitic animal runs the risk of wiping itself out by being discovered. They are the cat burglars of the parasitic world, sneaking into an animal, taking what they want, and then dispersing to invade other animals.

I remember a nine year old girl telling me she had a tape worm. As I was also nine, I thought that was interesting. I asked her what it did and where she had it. After she told me it was in her insides, I admit, I didn't think it was so cool. She also told me she was taking medicine to get rid of it. And of course at that age, I had heard of worms you could get from walking barefoot in the grass or from dog poop.

But for some strange reason, I have always thought there must be some explanation of why these types of organisms live the way they do. There must be some benefit, not just to them, but to their hosts. Otherwise they couldn't have survived as long as they have. Some parasites quickly kill their host or disable them to the point that both parasite and host will suffer.

People with sickle cell anemia are not susceptible to malaria. The sickle cell structure isn't amenable to the parasite that causes malaria, so the bugs can't affect the host. Did this mutation in haemoglobin in red blood cells allow those with it to survive while others didn't and thereby allow the mutation to become an inheirited trait? Did the mutation arise because of the parasite? Or was it simply a chance event that had a slightly positive result? I say slightly because while those with sickle cell survive malaria, they often have shortened lives due to the mutation, though in malaria ridden areas they do have an advantage.

Since my diagnosis, I have often thought of MS in these terms: of what benefit is it to me to have MS? Has some virus or bacteria triggered the onset of MS? Perhaps the presence of one of those parasites keep others from settling in us. Perhaps MS evolved as a way to protect us from another, less desirable, disease. Perhaps the immune activity triggered by MS protected us from strains of plague or smallpox during the midle ages.

On a related note, recent studies in south America and in Europe/Africa show a protective action of some parasites in people with MS as compared to those with MS but no parasites. But I'm not going barefoot in the grass any time soon.

If you're really interested in parasites in general, read Parasite Rex, by Carl Zimmer. It's an absolutely fascinating look at some of the earth's most reviled creatures.

S.

What a Long Strange Trip It's Been

It was the coldest part of the year when I was diagnosed; the second week of January with bitter winds and snow staying on the ground. I was immediately admitted to the hospital for IV steroids.( If I have to do it again, I'll ask to be treated as an outpatient.) It was 10 o'clock at night before I was settled into a room and started on the drugs.

The steroids they give you are quite amazing but they can have some wicked side effects, like sleeplessness and hunger. I ended up roaming the hospital neuro ward at 2 in the morning, wide awake and hungry. One of the nurses showed me where their kitchen was on the floor and told me if I felt like some toast or tea at night to just come in and help myself. It was like being in Cape Breton visiting relatives.

It was after 3 before I got to sleep that first night and I was awake again at 6...just in time for the nurses to come in for vitals and wait for breakfast. I had brought clothes with me so got into them and once I had a phone I started making phone calls to work to fill them in and to an agency I volunteered with to let them know I'd be away from home for a couple of days. Actually, I had no idea how long I was supposed to be in hospital.

There was a steady stream of visitors in and out for most of the day, including the MS clinic nurse, the hospital chaplain (though at the time I wondered what I needed a chaplain for), my mom, a co-worker, Jamie Paterson, who immediately recruited me to make an appearance at an MS Society fundraiser the next month, and the ever present nurses. One of the nurses was the sister of an acquaintance from university. She was the one who rounded up some info for me about MS, for which I was truly grateful. I knew what I had, but didn't quite understand what it could do or how.

I also got a room mate, a 40ish Middle Eastern woman who had a lung clot, and since there were no beds on the appropriate floor they put her on the neuro ward. She was on forced bed rest while undergoing treatment and more tests. She was a sweetheart. I had more energy than a two year old on sugar so would fly from my bed to the nurses station, downstairs for a Tim's coffee, back up for lunch and more visitors, and the occasional errand for my room mate (like getting a box of Kleenex) or to help her change her johhny shirt.

That evening I noticed my right hand swelling up from the IV thingy on the back of my hand. At 10 when the nurse came to give me another bag of steroids I asked if she could remove the thingy and put it in the other hand because of the swelling. She immediately removed it and attempted to put one in the opposite hand. I say attempted. She got another nurse who also failed in her attempt. and another. After the third nurse had failed I was starting to panic and hyperventilate, I was crying silently, but the tears flowed fast and furious. It hurts being poked so many times. My room mate reached out to hold my hand and try to keep me calm. Then they rounded up The Alien.

This guy showed up at my bedside, with by now, 4 nurses around me, and knelt by my side. I said I just wanted to watch ER, not be in it (it was a Thursday night). We all kind of laughed nervously and this guy slid the needle into a vein like a hot knife into butter and everyone heaved a sigh of relief. This man had to be the strangest looking human being I have ever encountered (which is why I silently dubbed him The Alien) but I suspect he had the most experience of all the nurses on the floor that night. He was a life saver that night. Well, a hand saver, anyway.

Day 3 in the hospital, again after 3 hours sleep and wandering the halls at night. My room mate's husband and teenage son arrived to visit and brought flowers. The son gave me a rose as well. My heart just melted and it was all I could do to keep from breaking down right there and then. I thanked them and left the room to give them a little privacy.

My room mate was taken for more tests that afternoon and I went to the window to look out at the blowing snow and pedestrians slipping on the ice. "Don't jump!" I heard a voice behind me. "It's not worth it" I turned to see a housekeeper pushing a cart into the room. He had a big smile on his face and I laughed out loud. I told him I had no intention of jumping out of any window and he asked how I was doing. We had a short but pleasant conversation. I have never forgotten his making me laugh.

That evening my room mate was transferred to the right ward for her and we hugged and said goodbye. I told her I'd keep her in my thoughts and prayers and she said she'd pray to Allah for me.
One of the nurses came in and said I was getting my cocktail early that night so I could go home and give the bed to someone who needed it more.

For exactly 55 hours I was a patient at the hospital. I was scared, I was happy, I cried, and I laughed. I rarely slept. I was starving. Rollercoaster doesn't even begin to cover the experience but it was the start of a long, strange trip.

S.

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.