More Irony or Ironworks

My father is a retired electrical engineer. He's pretty big on science, specifically physics and math. However, it took me a really long time to understand what he did for a living. When I was 5, we went for a drive one day to the site of where a transformer station was being constructed. Big coils, lots of power lines, and a fence with big warning signs to stay out. There was also a moat around the site where they were going to install drainage. And mud. Tons of mud and muck (it was under construction after all). Dad pointed to the site and said, "This is what I do. I help build those things".

To a 5 year old, that means hammer and nails, physically putting something together. So for years I thought my father actually put those things together but couldn't understand how he never brought home any mud or dirt. For weeks after that I would inspect his shoes for signs of dust at least, but there was no evidence that he "built" those things. I never considered that he might be have lied to me so I was even more amazed that he could build those things and not get dirty. It wasn't until I was 14 or 15 I finally understood what my father did for a living.

I was a pretty quick study with most subjects in school but some things seemed to just be beyond my comprehension. They took me longer to get. Fortran! OMG, in 1981 I took Fortran at university and flunked it. Took it a second time and managed to pass it, but God only knows how. It wasn't until a few months ago that I realized Fortran is a language. I thought it was math! If I had known in 1981 I was studying a computer language, I might have passed the darn thing the first time. I just couldn't reconcile Fortran with math.

We all have mental blocks that prevent us from "getting" something, be it Fortran or some other concept. I have a mental block with technology that I sometimes get teased about at work. I am the first to admit it. The fact that I have started and maintain a blog never ceases to amaze me as I can crash a computer faster than you can say "binary code". But I passed a milestone tonight.

I "Skyped" with Charles from msbpodcast. He has recorded our conversation and hopefully we have begun what will be a fun and informative partnership for some of his podcasts. Not that they aren't fun and informative on their own, but the partnership thing is new to the both of us. Keep your eyes and ears peeled for my debut on internet podcasting.

It's hard to believe this technology allows us to talk over the internet. OK, all you techy types who are right now laughing at me...STOP IT. I'm a Luddite. Just like the two little hand painted iron figures I keep in front of me at the computer.

S.

You Can Pick your Friends and You can Pick Your Nose But you Can't Pick your Friend's Nose

Yesterday I had an appointment with my neurologist for my anniversary check up. Since I was diagnosed I get the once over at least once a year as per guidelines of the drug study I entered. I went through the usual paces: the walk test, the PASAT (that horrible addition test that requires listening to two numbers, adding them, hearing another number, adding that to the second, hearing another number and adding that to the third one and so on- to myself I call it the Piss test beause it makes me feel really stupid no matter how well I do), and the regular hopping on one foot, heel to toe, and holding-out-your-hands-palms-up tests. Then I have to fill out a questionnaire on symptoms and the degree to which I am affected by them and am-I-ready-to-jump-off-a-bridge series of questions.

As far as I know I did all right on all those tests. And no, I'm not ready to jump off a bridge.

Dr. Murray did ask me about any symptoms I've had recently so I mentioned the tingling I've had off and on on my left nostril. He touched it and the right one several times with a brush (Was there a difference in feeling? Yes). Then he got a Kleenex, and twisted it to a point and stuck that IN my nostril. No reaction from me. He stuck it in the right...that tickled. Back in the left...but no tickle reflex. Then I told him to pick his own nose.

S.

I'm really glad Dr. Murray has a sense of humour. The picture above is of "Nose Cups", novelty cups for use at parties etc.

A Salamander's Tale

Redback Salamander from Salamanders in the Hamilton Harbour Ecosystem



In Nova Scotia we have an incredible coastline. Each year it gives up more and more information about the geology of the land and what animals lived on it. The fossils people are discovering are fantastic and I've been lucky enough to have come across a few on my own. About 45 minutes from where I live, at low tide, you can walk out on the beach to a set of footprints thought to be 350 millions years old. Way cool! Though some doubt if they're actually footprints or if they're fin marks.

If they are footprints, they were made by a giant salamander like creature. By giant, I mean by today's standard. I was told (by a geologist) that it was about 6 feet long. That'sa one-a big-a newt. No way would I have tried to pick that one up.

Of course I pick up or attempt to pick various and sundry animals I come across, including salamanders. They are amphibians, related to frogs, and have a remarkable ability to regnerate limbs. As a matter of fact, if startled by what they think is a predator, their tail can just "let go" and become disconnected from the rest of the body. The tail wiggles like crazy so the predator goes after that and gives the animal enough of a chance to escape.

A few years ago, a friend and I cultivated a garden in her backyard to grow vegetables. I must say I was really more keen on investigating the creatures that took up residence in the garden. One day, we discovered a group of baby salamanders, maybe 1 and a half to 2 inches long. I reached down to pick one up and the tail just popped right off. I picked up the salamander, apologized for scaring it unintentionally, then picked up the tail. I had it on the palm of my hand and watched it for about 10 minutes as it wiggled and squirmed. It was the most disconcerting thing, like a severed hand in a horror movie crawling along a floor, as it seemed to be powered by...nothing! It was just moving on its own.

From the time I was a kid and had learned about this phenomenon, I was amazed by it. But until I was almost 40 had never actually seen it. I put the tail back on the ground, continued with the weeding and watering of the garden, and after twenty minutes went back to pick it up. As I did so, it started to move again! This thing had been disconnected from its "power" souce for half an hour but still had some "juice" left in it. Wow! But again, disconcerting. It's kind of like how you'd feel if you unplugged your TV from the wall, but it suddenly came on again. Spooky.

What is the power source for the tail? It's a combination of chemical and electrical activity. The length of time the "power" stays effective depends on the species of animal and it's size. That got me thinking about a chemical and power source for folks with neuronal damage due to spinal cord injury (SCI) or diseases like MS. I know they're experimenting with electricity to allow people to stand and walk again. I've seen the contraptions patients wear to electrically stimulate the legs to allow them to be mobile. (It's still fairly early in the game to make these things practical and cost effective for the general public, though there are types of TENS contraptions to help those not as severely affected as an SCI person)

Last night I was speaking with a woman from the VON (Victorian Order of Nurses) at a fundraiser I was MCing for them. Mary and I had a wonderful talk last year, (at the same event) and last night we continued our chat of shared interest in science and nature. We talked of frogs and that led to salamanders. She's had some of the same ideas as me and went so far as to send an e-mail to the Christopher Reeve Foundation to inquire if they were investigating salamanders' amazing ability and what the implications were for human rehabilitation. She still hasn't heard back from them.

But I'll bet dollars to donuts, it's going to be something as simple as a salamander's tail that solves the mystery of MS.

S.

Penis, Vagina, and Breasts

I am not a therapist. I'm certainly no sex therapist. But I will talk about it and the things I've learned and researched as it pertains to me and others with MS. Which is why I was asked last year to facilitate the Healthy Relationships and Sex chapter of a Journey to Wellness program for fellow MSers. Part of what I presented to this group, and will present to a new group this year, follows.

One of the first sensations we have as babies, is the sensation of touch. In fact, the earliest sense to develop in the fetus is the sense of touch. Human babies, and other primates have been observed to have enormous difficulty surviving if they do not have this sense. As well, if babies are not touched and held, they have developmental difficulties.Touch is the most basic part of a sexual relationship. We don't usually just jump into sex without some other physical contact. Touching, exploring, caressing; these are all part of an introduction to sex.

But what if touch hurts you? Most of us with MS have experienced this. It's the reason I began to use a cane in the early days of my diagnosis, to keep people from touching, either deliberately or accidentally, the sensitive side of my body. Luckily the pain went away in a few weeks, but during that time an invisible line went through my body dividing it in half. The right side was on fire, itchy, and painful to touch. The left side was fine. The line that went through my body also divided my genitals. No amount of KY jelly in the world was going to enable me to have sex without serious pain. If the pain we experience from those sensory symptoms is longer than a few weeks, there are medications that can help reduce the pain. This is where having a frank and open dialogue with your doc is of benefit.

Another problem a lot of MSers face is spasticity. This one may take a little longer to figure out. Some positions may be difficult to hold for any length of time or may result in painful spasms. My first suggestion is to experiment. Which positions work best for you? Would extra pillows or styrofoam forms help you maintain a more comfortable position? Or perhaps ties or ropes to help keep you in a comfortable position. Maybe sitting on the kitchen table is the best position. Find what works for you and do it. And again, there are meds that can help ease spasticity.

What about the question of libido? Drugs, pain, and mental status all contribute to a lack of libido. Experimentation is the key word to libido. What made you think about having sex in the past? Try it again. Fantasize. What would you like to do but haven't done? Talk about it. Remember, what's between your ears is the most important sex organ you have. Have a "touching" party, where you do NOT have sex, but only touch and kiss. Make out like teenagers. That might take some of the pressure off having to "complete" an activity, and arouse feelings you thought were gone.

There are a whole slew of reasons people don't have sex when they have MS, both biological and mental. Bowel and bladder problems can be a definite hindrance. Buy rubber sheets or put down a painting tarp (or old shower curtain) for accidents. If you are able, empty your bladder before sex. Toys can be a great benefit for folks whose sensory abilities are reduced and need a little more physical stimulation. (For folks still shy about visiting adult stores there are a whole slew of them on line. And I read of a "Christian" online adult store, run by a husband and wife team) And TALK to your partner about your concerns. If you can't talk to your partner about what you want and need to have sex, that's a whole other can of worms you have to learn to deal with first.

Talking and experimenting are the two main things I suggest to people who are having difficulties with sex because of MS. We talk easily enough about the chili that gave us gas last night or the broken arm we had as a kid, but we have a harder time talking about sex. If you can say the word "finger" out loud, then you can say penis, vagina, or breast, too. Try saying out loud the words you find embarrassing. Repeat them until they roll off your tongue like other words. Communication is key to all of us. If saying certain things, or asking your partner for particular moves is difficult, consider writing or typing out what you want or don't want. Write it in the sand at the beach. Send a telegram. Act it out. Take out a personal ad in the paper, then when it's published, circle it and leave it for him/her to find it. As long as you get the message across, who cares how it's done.

And sometimes, even if you don't feel particularly sexy, engaging in sex can ignite the flame. It can also help you sleep better. And there are the added benefits of the hormones and chemicals it releases into your bloodstream that make you feel good, sometimes with pain-relieving effects.

Just like the lottery, where you can't win if you don't play, we can't get from sex what we want without some guidance for our partners. They're not mindreaders, after all.

S.
This is not a speech I give for the presentation. But it is an outline of the direction I go, with lots of room for discussion by and with the participants.
By the way, I'm interested in what suggestions you might have as far as this topic goes. What questions might you ask?

Taking the Lord's Name in Vain

While looking for something on the net this morning I came across something else of interest. that happens a lot to me. I am known for my fondness of useless information, but it has helped me win a few Trivial Pursuit games. And I am easily amused and distracted. Anyway, while searching for whatever it was, I came across the name of a neurologist who lived in the first part of the 20th century. Interesting fellow, really, as he was knighted, then later made a baron. He served on a number of government committees in the areas of physical and mental health.

In the past, at least in the English speaking world, you were given a name and identified by your profession. A baker named Joe, was Joe the baker, and later Joe Baker. If you made barrels for a living, you became known as Cooper. In Gaelic families, your father was often referenced in your name. Hence Joe MacKinnon was really Joe, son of Kinnon, just as in families of Germanic descent "von" means the same as Mac : son of. And quite often, if you were born a Cooper, you became a cooper by trade. As time wore on, people drifted from the professions from which their ancestors were named.

What's more interesting to me is when a person's name reflects somehow in their choice of profession. For example, Joe Payne becoming a dentist, Joe Nurse becoming a doctor, Joe Baker becoming a....baker. I think Dear Abby or Ann Landers have had a few columns on this phenomena.

So when I came across this fellow this morning, the neurologist (if you're still with me), I was amused: Dr. Russell Brain. How much did this fellow's surname have to do with his choice of profession? Did he think before attending medical school of the consequences of becoming a doctor?

Who's your neurologist? Dr. Brain.
The Lord?
No, Jesus was taken. Lord Dr. Brain.....and of course in later years, Baron Brain.

See what I mean about easily amused?

S.

What the &*%^$ Do We Know

I have an interest in old stuff. Pretty much anything old actually. I'm very easily amused. I have a pair of tableknockers. Bonus points for you if you know what those are. Amongst my antiquities are a Dick Tracy camera, a Little Orphan Annie Secret Decoder badge, a gold and agate pendant (with a place for hair on the back side) made by the jeweller to Queen Victoria, and a few old books. Nothing I own is of great value except to collectors of those items, but to me they are interesting.

I was at the medical library in town one day several years ago, researching MS, and discovered a shelf of books being sold by the library. There was an almost entire set of medical encyclopedias and several other texts that grabbed my attention. $2. a volume....hmmmm. I bought the encyclopedia set, missing Volume 1 (so as long as I don't get arthritis I should be OK), and a couple of other books, then raced home before the library changed its mind.

The Encyclopaedia Medica was printed in 1901. The first thing I did was look up Multiple Sclerosis. It said See Paralysis. So over to that volume. and I found what I was looking for under Disseminated Sclerosis. Here's some of what they say:
-young adults are the most commonly affected between the ages of 20 and 30.
- it is quite exceptional for the disease to commence later than 40 (in 1900 only 50% of children born could expect to live to 50) or in children.
-one sex is as liable to be affected as the other.
--cause suspected included metallic poisoning, alcohol, fevers such as those induced by malaria and influenza, blows and injuries, exposure to cold and chills (the author points out the impossablity of proving these things as a cause of the disease, but points out that they definitely influence the course of the disease)
-pregnancy and delivery can exercise an unfavourable influence on the course of the disease.
-fatality is inevitable (though the author points out that nothing is more difficult to foretell than the probable duration of life)
-cases that show a tendency to remission of symptoms live longer.

So here we are more than 100 years later. We know this is mainly a disease with its onset in young adults (age 20-40). We know it occurs in children and in those over 40, but women are 3 times as likely to be affected as men. Pregnancy and delivery can affect the disease.

We still don't know the cause, but all those things listed above can affect the symptoms of the disease.

Treatment in 1901 consisted of the administration of silver in the form of nitrate or chloride and arsenic (!). Massage, hydropathic and electrical treatments are also suggested.

"Massage and passive movements improve the nutrition of the muscles...most patients bear cold badly...rest is essential...daily open air carriage or wheelchair exercise is no less important...depressing emotions, mental or physical fatigue, injury, exposure to wet and cold, and excesses of all kinds must be studiously avoided....female patients must be warned against pregnancy..."

We know that massage, hyrdopathic and electrical treatments can be beneficial. We know that rest is essential (I am the queen of napping).


In the Text Book of Nervous Diseases (published in 1898), it is much the same with a few notable exceptions. This volume says it occurs more frequently in the male sex and that "the sufferers have inheirited a feeble power of resistance on the part of the central nervous system." Treatment is pretty much the same with the added "use of iodide of potassium and bichloride of mercury".

All the things that we knew about the disease back then mostly still hold true today. You might be thinking that we don't know enough. True, we haven't figured out what causes MS and we still don't have a cure. But we understand the disease process much better, we have treatments that can slow down the progression of MS and reduce frequency and severity of relapses, we know that nutrition and exercise can aid in treatment of symptoms.

In university, a big question that students have is "What am I going to do when I grow up?". I used to tell fellow students that it was just as important to know what you didn't want to do as it was to figure out what you did want to do. In the past 100 years we have discovered what doesn't work for MS (like arsenic), and we will continue to make more of those discoveries before we discover what will work. I just wish it were faster.

S.

Basketball as MS

Andre grew up in Detroit and not in the best of circumstances. But he had mentors who helped him along the way. Basketball enabled him to go to university and after obtaining a degree in child psychology he taught elementary school for a few years where he mentored others. Definitely a "Pay it Forward" sort of thing.

I met the CEO and an owner of the Halifax Rainmen, Andre Levingston a few months ago when the American Basketball Association set up a pro team in Halifax. He was in doing interviews with a sister station who are sponsors of the team. Andre is a stiking figure, handsome and always well dressed, and has an air of confidence that immediately makes YOU feel good. And what's more, he is an inspiring human being. He inspires his players to not only play a game, but to be really involved in the community

A recent article in the Halifax Chronicle Herald and on the Rainmen website has details.

As a university student I attended every single home game the St. F.X. X-men played. Basketball can be a very exciting sport when everyone is on their game. I especially enjoyed the interaction of the players, the passes, set-ups, and change-overs. I even dressed up like one of the players for Hallowe'en one year (we had the same hair style and I added a moustache).

Like basketball, MS is a team sport. An individual may be a star player but he needs the team to help him score. With MS, you need a team to help you. We've got neuros and docs, nurses and physio and occupational therapists who all contribute to our ability to play the game. We have life partners, children and parents who coach us and lead the cheers to keep us going. We have extended family and friends on the internet who can encourage us from afar, almost like we're on a road game and getting a telegram from home.

We have team mates who pass us info, like the players passing the ball. And we have owners, who, like researchers, are always looking for the best outcome for the team.

Like basketball where players have multiple roles, sometimes going from defense to offense, we as MSers have multiple roles. We are sometimes the star, sometimes a passer, and sometimes the owner. Sometimes we win a game, sometimes we have to suck it up and admit defeat, just like those stupid relapses we have.

My favourite quote from Andre:
"Basketball is going to come to an end one day but you can be a good man for the rest of your life."

Like Andre said, basketball's going to come to an end one day. MS will be cured one day. Here's hoping that when it does we can take what lessons we've learned from the sport to lead great lives.