I've been meaning to post for the last week about my own experience with Twitter. I have been to two tech-oriented conferences in the past month or so, a regional Library Technology Conference in March, and MinneWebCon a week and a half ago. It's only rather recently that I have been able to bring a laptop computer with me to conferences, so it's still very much a novelty to me. (Judging by the number of people with Internet-capable devices on their laps or in their hands at MinneWebCon, I am probably among the last! ). Although handicapped somewhat by the umbilical cord of my power cable (the battery will not hold a charge for more than 5 seconds), I found that technology has enhanced my conference experience in some interesting ways. Not only does it allow me to take notes more efficiently than I could with pen and paper, the wonders of wifi allow me to connect to the Internet and immediately follow up on anything of interest that a speaker mentions (or occupy myself with any number of entertainments, if things get boring). It seems that live blogging is now passé. The latest trend is to tweet one's way through the day.

Some tweets were reiterations of interesting things said by the speaker, and some raised questions or commented on the presentations or other aspects of the event. While many of these tweets were presumably for the benefit of that person's followers on Twitter, any marked with the #mwc09 hashtag could easily be found by anyone interested in the conference. To a certain extent, that made it possible to follow what was going on in sessions other than the one I was attending. It felt like the oddest combination of conversing and eavesdropping, mostly with people who were completely unknown to each other. Participants might be sitting just a few seats away from each other without realizing they were reading each other's tweets (though may have made each others' acquaintance later on at the bar during the "tweetup," which was, of course, announced using Twitter).

For me, the ability to carry on a sort of low-impact conversation in the background added a lot to my experience of the conference, but I got to wondering why Twitter was the medium of choice for this type of interaction. One problem is that your followers on Twitter receive all your tweets, not just the ones they are interested in. Unless your followers are all at the conference with you, they are likely to be baffled, if not annoyed, by a deluge of tweets about some event they know little or nothing about. In fact, if you read through the stream of #mwc09 tweets I linked to above, you would see several irate tweets from followers of conference participants asking what the heck #mwc09 is and why they should care. A chat room would seem to be a more efficient and effective way for conference participants to talk online, yet people were happy to use Twitter instead. Maybe it's precisely because of the public nature of the medium. People take a kind of secret pleasure in their ability to insert their thoughts into other people's lives -- kind of like an upscale version of writing on the bathroom walls.

Now excuse me while I tweet the fact that I just posted this.

UPDATE: Some folks in Europe recently published an academic paper on the use of Twitter at conferences.

It's not that I wanted to remain a child. I simply knew that as soon as I got older, I'd wish I had appreciated my youth more. In other words, I spent entirely too much time thinking. I was a strange child who listened when adults said things like, "kids your age always . . ." and "kids your age never . . ." and vowed to myself to be or do just the opposite of what they expected. When I finally did get my drivers' license, I went three months without driving because I heard my dad say he was sure I'd always be asking for the car. I can be stubborn that way.

In some ways, reaching forty feels like reaching a sort of no-man's land. Not young, not old. Every other decade seems more momentous. Thirty was a bigger deal -- sort of the official cusp of adulthood, and fifty sounds more distinguished -- half a century, after all. Forty feels very . . .average, I guess, a state I mostly try to avoid.

O the other hand, in Jewish tradition, 40 is one of the most significant numbers. In the Hebrew Scriptures, it rained for forty days and forty nights during the great flood, and the Jews wandered for forty years in the desert before getting the word they were headed for Israel. So maybe I'm finally leaving no-man's land, rather than entering it. The first forty years of my life were a probationary period, a trial to test and strengthen me for what lies ahead. I'm looking forward to entering the promised land.

Ah yes, the food. Everyone assumes the Thanksgiving feast they grew up having is the True and Correct menu. Most people don't even think about it until they experience Thanksgiving with a different family and are forced to confront the question of proper side dishes or the conundrum of the pies. This fantastic post says it better than I ever could..

I have been aware for a long time that my family has a few of its own Thanksgiving peculiarities. For one thing, since I grew up with no extended family within a thousand miles, our celebration has always been shared with a motley crew of family friends. As a kid, the core group was always my mom, dad, and sister and one other family of four, with various other people in supporting roles. As I grew older, the group evolved. All but one of the members of the other core family moved out of state and gradually, following in my parents' footsteps, I accumulated a group of friends my age who have now become regulars. The biggest change came two years ago, when we joined forces with my husband's family (including his parents, two sisters, and their families).

With the changing cast of characters, I think our family Thanksgiving traditions have remained more flexible and adaptable than most. Over the years we have incorporated such "innovations" to the menu as mashed potatoes, bread, and even lentil loaf (in addition to, not instead of the turkey), not to mention the comings and goings of dessert fallacies like cheesecake (cheesecake on Thanksgiving? C'mon!). But even in as liberal a household as ours, there are still a few sacred cows. Here are the three commandments of the Friedman Family Thanksgiving:
1)Remember the pickles, and forget not to place them on the festive table. Gotta have pickles.
2)Forsake not the jellied cranberries. The kind in a can that you slice up into discs. Other cranberries may be present, but not to the exclusion of the sacred jellied cranberries.
3)Thou shalt honor and protect the stuffing (and yes, we call it stuffing not dressing, though no one has actually cooked it in the turkey since I was a kid). Ours is made not of breadcrumbs but rather (drumroll, please) . . . noodles, kind of like a savory kugel. I think there was one time my mom tried to substitute a wild rice-based stuffing. We don't talk about that time.

This year we hosted a record 20 guests for dinner, with 3 more for dessert. After the cleaning was all done, the extra chairs and tables stored away, and we collapsed in our beds in the wee hours of Friday morning, thousands of Americans were converging on Wal-Mart and Best Buy, even paying people to hold their place in line. As we snored happily, a man was being crushed to death by shoppers hell-bent on buying a plasma-screen TV for under $800.

I don't even have cable.

Not my actual car, but looks exactly like it.
(courtesy of cathfach724)

This also marks the first time in my life I have owned a car other than a VW. Not that I have owned many cars. I'll be 40 in February and this is only my 2nd car -- well 3rd if you count the junker we had for about a year before we bought the car that died this past May. I inherited the VW habit from my parents, who had a continuous line of VW ownership dating back to the early 60s, when my dad got his first car, a Beetle. Though they did own a Buick station wagon as a second car to haul us kids around when we were little (and the camping gear, natch), we always had at least one VW in the family. The staff at the VW dealership knew my father by name and the guys in the shop always knew to treat us right. When it came time to buy my first car, I had no trouble converting my husband, who was jaded by a series of unimpressive Chevrolets, to the faith. We bought a VW Golf, first the used one I mentioned above, and then a new one, which served us well for 11 years until its sudden decline this past spring. So you'll understand what a shock it was a few years ago when my parents gave up their Passat and bought a Subaru Forester because they needed a car my dad, who has mobility problems, could get in and out of more easily. It was as if they had announced they had announced they were joining the Hare Krishnas. I was at first shaken by their defection from the VW family, but when bolts of lightening did not come and strike them dead, I realized that I, too, could seriously consider looking for a car that didn't necessary come with fahrvergnugen, whatever that is.

Since the day our old car bit the dust, we have been relying on the public transportation system and kind friends and family members who have loaned us their vehicles for extended periods of time -- over two months in one case!

Let me be loud and clear: We are extremely grateful for their generosity!

During that time period, there were only about two weeks when we had to rely completely on the bus. One of the things I like best about our home is the location. We can easily walk to grocery stores, restaurants, movie theaters, etc., and at the same time it is only a few blocks from the natural beauty of Lake of the Isles and several small parks. I regularly bus to work (in fact it is far more convenient than driving and just as fast) and sometimes even cycle. We've always shared just one car between us, and only rarely is it a problem. The nearest bus stop is just a block away and major transit stations are also quite close. Although it seems counter-intuitive in some ways, I've always found public transportation to be liberating. I liked the idea that I didn't have to use a car to get around.

That's all well and good when you know you still have access to a car when need it. It was a very different feeling when that safety net was gone, especially now that my husband's job is located in a third ring suburb. Liberated is definitely not the word to describe the feeling of those two weeks. Rather, we had to plan carefully around the bus schedules (extremely limited when it comes to reverse commuting to a distant suburb), frequently rely on others for rides (which makes me feel beholden), and sometimes simply cancel certain activities. It doesn't help that both our families live in town, and we have been in the habit of fairly frequent visits -- and expected to participate in such get-togethers much more often than if we lived in some distant city. The experience, mercifully short though it was, certainly reinforced for me how difficult it must be for those who rely on public transportation on a more permanent basis.

The experience of the past six months also reinforced my appreciation for small, fuel-efficient cars. As it happened, almost all the cars we borrowed during that time period were large vehicles. Two were station wagons. The smallest was a Subaru Forester (a compact SUV). None of them were particularly impressive in the fuel efficiency department, either. Driving home from the dealership in the Honda Fit I reveled in its smallness and nimbleness. Parking in the garage was pure pleasure: For the first time in months I didn't have worry if the car was pulled in far enough to clear the closing garage door without making it impossible to open the "people" door to get out to the sidewalk. Best of all, the gas gauge hasn't visibly budged.

And there's no sign of lightening bolts, either. Yet.

Actually, this post is about the bridge across the Mississippi -- the rebuilt Interstate 35W bridge, which opened early this morning. Although the bridge is little more than a stone's throw from where I currently sit at work, I haven't actually seen it since it opened to the public. I did, however, go on the Star Tribune web site and watch a short video of the first wave of traffic, led by first responders and DOT maintenance trucks, making its way across the river shortly after 5am. You can see the various colored lights of the emergency vehicles twinkling in the darkness like Christmas lights, and hear the honking of the horns.

The whole thing was quite moving, for some reason. I haven't quite been able to put my finger on why. Certainly I'm relieved that the inconvenience of the detours is over, and I'm looking forward to much less traffic at the U of M West Bank exit, now that people won't be so tempted to get off there to use the 10th Avenue Bridge. But it's more than that. I didn't have a close to connection to anyone who was killed or injured when the old bridge fell. There's nothing that explains why I felt so emotional. But watching the two lines of traffic approaching from opposite ends of the bridge move towards each other, finally meeting in the middle and closing the dark chasm with a ribbon of light and sound, I just felt like something important had happened. A connection. A completeness.

I suppose the shine will be off quite quickly. New traffic snarls are already developing south of the bridge where people merge on to westbound Interstate 94. Sooner or later, we'll be hearing about the first fatality on the new bridge from some car accident. The elegant white concrete will inevitably prove an irresistible target for graffiti vandals. In the meantime, I'll enjoy this sense of wholeness, this satisfaction in the rejoining of the northern and southern halves of my city. In the words of E. M. Forster, "Only connect . . . live in fragments no longer."

As a kid, we made regular visits to both cities for cultural events, to eat out, or to shop. A Prairie Home Companion and the Science Museum ensured we made regular forays to downtown St. Paul, and downtown Minneapolis was the site of the much-anticipated, annual post-Christmas shopping trip as well as the home of what my parents deemed one of the few decent Mexican restaurants in the Twin Cities during the 1970s: Guadalaja Harry's.

In addition to the elephants and their ilk, St. Paul was also the home this week of Jon Stewart's The Daily Show. Tickets for the studio audience were made available last May and I was lucky enough to secure a reservation for last night's taping. Like those free movie preview passes you can sometimes get, these tickets didn't actually guarantee a seat. They only guaranteed you the right to stand in line to try to get a seat. The show has set up shop at the History Theatre, located directly on the designated protest route through downtown St. Paul. As I sat on a ledge outside the theater, enjoying the September breeze and the musicians playing Indigo Girls covers on the lawn of the adjoining McNally Smith College of Music Media, I could also observe the many barriers set up along the sidewalks, police in full riot gear, and then a large group of protesters flanked by cops, "peace patrol" members in yellow jerseys, and journalists.

Shortly after the protest went by, the Daily Show staff decided to move the line inside the building, for fear of possible violence or general mayhem. Sure enough, when the show was over and we came outside at about 7:15pm, we saw a mass of people on the bridge crossing I-94, just to the north of the theater, with an equally impressive number of police blocking their progress towards the Excel Energy Center to our south. Since our car was parked on the opposite side of the street the police were blocking (after arduous navigation of the various detours created for the convention's security zone), we beat a hasty retreat, afraid our path to the car might soon be cut off. As it turns out, the stand-off continued for quite some time but never made it past the bridge. It certainly made for a interesting visit to our state's capital city.

The Daily Show was great fun, and definitely worth both the wait and putting up with the RNC security zone. You can see the episode I was in the audience for online. I was sitting in the 2nd row, stage left, but you can't see me at all on camera. If you listen real closely, I'm the one in the background shouting "Minneapolis rules!"

My first trip, in late June, was to Los Angeles for a conference (the seen of the somewhat abortive "live blogging" attempt in my last post). Just five days after getting back from L.A., I found myself in New York City. In Los Angeles, I drove for miles of highways under flawless blue skies. My one attempt at walking in Los Angeles -- a mere half mile from the conference hotel to a restaurant for lunch -- required taking my life into my hands, as the sidewalk was non-existent in some areas and the cars speeding by seemed oblivious to the presence of any life unencased by steel panels. In New York, I walked miles of sidewalk under cloudy skies in the shadow of skyscrapers, muscling my way through crowds of pedestrians. Absolutely no driving was attempted! In Los Angeles, I drove down Sunset Blvd from Fairfax to Brentwood, observing with interest (through the sealed compartment of my rental car) the diversity of neighborhoods that street runs through. In New York, diversity hit me like a hammer over the head the moment I stepped out of the Port Authority Bus Terminal into the cacophony of 8th Avenue. Within minutes I had heard at least five different languages being spoken and seen more examples of humanity than I did in an entire week in Los Angeles. To be sure, Los Angeles is a diverse city, but the sprawl and the car-centered culture lessen the intensity of the experience for the visitor significantly.

Both of the two cities include pockets where you could easily forget where you are. In Los Angeles, it was the Farmer's Market, with its densely packed fruit and vegetable stands, food stalls, and souvenir shops. In New York it was Central Park, with its gardens, lawns, forests, and even a castle.

My travels included visits to both the Pacific and the Atlantic Oceans. In Los Angeles, I spent an afternoon at Venice Beach, and my trip to New York included a quick jaunt to the boardwalk in Atlantic City. While the cities of Los Angeles and New York City couldn’t be more different, the two beaches felt much the same. The sand was different, but the seascapes weren’t that different, and the boardwalks were lined with the same souvenir shops, ice cream parlors, and busking musicians. It’s just that Atlantic City’s board walk was peppered with casinos, while Venice had muscle beach.

And then there’s Chicago. After a two week hiatus from the city, spent in the oasis that is Pinewoods, I returned to Minneapolis for two days and then flew to the Windy City for a work-related meeting. Chicago seems so straightforward compared to New York and Los Angeles, the archetypal city. More dense than Los Angeles but minus the cacophony (and the stink!) of New York, this trip made me realize how much more comfortable I feel in Chicago than any of the major American metropolises. Maybe it’s because it’s Midwestern. Maybe it’s because as a native of the Land of 10,000 Lakes I feel more comfortable in a city on a lake than an ocean. Or maybe it’s because they say “pop"? and not “soda."?

I’m back in Minneapolis now, and I’m staying put for a while. Well for another week, anyway. Then I’m off to the airport again. . .

At this very moment I'm attending a seminar on blogging in archives and special collections, so I couldn't resist the opportunity to "live blog." Actually, I was too chicken at first, but one of the panelists noticed me tapping away in the back and eagerly asked if I was blogging. So I decided why not?

The seminar started with an overview of blogging and a near-real-time demonstration of setting up a blog (using the example of the seminar blog), showing how easy and fast it can be. Next we heard from three panelists who are using blogs in their repositories, Stephanie Horowitz at the Charles Babbage Institute, John Overholt from the Hyde Collection at Harvard, and Nancy Kuhl at Yale’s Beinecke Library.

More later. . .

I sat up in bed and debated for a few minutes what to do. I didn't really feel like I was having a heart attack (I didn't feel like my heart or breathing was labored), but the fact that the pain radiated through to my back concerned me. Of course my husband woke up, too, and from my description, which sounded similar to something he experienced a few years ago, he thought maybe it was some kind of bad heartburn. We decided to call the nurse line, but those folks want to err on the side of caution, so I wasn't surprised when she told me she couldn't rule out some kind of "cardiac involvement" and that I should go to the ER.

So off we went. We are fortunate to live near several hospitals, but we figured we should just go to the closest, which is the county hospital downtown. That turned out to be a mistake. I walked in and even before I could say what was wrong, the triage nurse was telling me that there was a 4 1/2 hour wait. I explained that I'd just like to find out if I was having a heart attack or not, and that seemed to galvanize them a bit, but I still had to sit down at the registration desk and discuss such inanities as my name, address, and social security number (I'm still wondering why they wanted that. I was thinking of arguing about it at the time, but in my extremity, I didn't have the energy to bother), and of course, the insurance information. Meanwhile, the pain had increased to the point where I was feeling quite desperate.

Once the staff satisfied themselves that I was a real person with an identity of some kind and an insurance company they could charge, they took me straight back for an EKG. I remember it seemed like it was taking forever for them to hook up all the electrodes, but once they finally had me wired up, the test took about one second. They just turned it on and flipped it off again. I concluded I was not in immediate danger, as I was sent back to the waiting room to await further attentions, presumably once the gunshot, car accident, and other trauma victims were out of their hair. The strange thing was that the waiting room was mostly empty. There were maybe two or three other people there awaiting treatment, plus a small group of people waiting for updates on someone who was already being seen. It was almost eerily quiet. Nothing like TV, I can tell you.

At about 5:30am, the pain started to ease up a bit. I went back to the triage nurse and asked if the wait was still going to be long. She confirmed that it would probably be a couple more hours. The thought of waiting that long was, frankly, unbearable, so I decided to leave. I figured since I wasn't having a heart attack, it was probably the heart burn after all. I figured we could stop at Walgreens, get some Zantac, and probably get relief faster than I'd get it at the hospital. When I told the nurse I planned to leave, she looked at me doubtfully, but didn't try to talk me out of it, so off we went. By the time we got home around 6am, I was feeling quite a bit better, so I took some Zantac and got a couple hours of sleep.

By the time I woke up, I was feeling okay. The pain was still there, but it was more of a discomfort. I figured it had definitely been heartburn, popped some more Zantac, and headed out for a full day of activities. The "discomfort" stayed with me the rest of the weekend, though, and when it was still there on Monday morning, I thought, hmmm. I never did see a doctor, so maybe I should stop by the urgent care center before work and just make sure everything is okay. Maybe I need some kind of prescription strength medication. So I called in to work and said I'd be late, then headed over to the medical center.

As soon as I described my symptoms to the doctor, she thought it might be my gall bladder, a possibility which had never occurred to me. She ordered some blood tests and then, to my surprise, said she was sending me to the hospital for an ultrasound. I figured it was probably just a precaution and would turn out to be nothing. Less than an hour later, I was lying on a table while a radiologist gave me a strange species of abdominal massage. Of course, she wouldn't tell me anything until the doctor had a look at the images (though I did get her to confirm that all the requisite organs were, in fact, present and accounted for). So it was another half hour later that I was called from the waiting room and told that my gall bladder was basically a sack of gravel and needed to make a speedy exit.

That's how I found myself, just a couple of hours later, with an IV in my arm, sitting in front of a jocular surgeon who was asking me if I wanted him to save the stones for me. Apparently, he had a previous patient who wanted to make jewelry out of hers. I assured him I had no such plans, though I did kind of want to see the suckers and perhaps grace them with a few choice parting words. Not long afterwards, I was walked (yes walked!) to the operating room. This really surprised me, as I assumed I'd be wheeled there on some kind of gurney, or at least in a wheel chair. But nope, I followed the nurse down a hall, through the doors, and was invited to hop up on the table. I remember lying down and the arm with the IV being strapped to a sort of shelf sticking out from the table. I also remember that the table was really narrow -- barely wider than me. I suppose that makes sense, as the surgeon would want to have unimpeded access to my innards, but again something that surprised me.

Apparently, this particular procedure is frequently performed on an outpatient basis, but my surgery didn't take place until the afternoon, and I was in no shape to go home that night. I was admitted, and thus experienced the 2nd longest hour and half -- and the longest night -- of my life. This was my first time staying overnight in the hospital since I was born, and I'm here to tell you, it's just as bad as everyone says. The grogginess of the anesthesia wore off just in time for me to try to fall sleep for the night. I couldn't get comfortable, and my legs were encased by some kind of special massage leggings that are supposed to help prevent the formation of blood clots. At first they felt kind of good, but soon they got really hot. The nurse agreed to take them off for a while, but she said I had to promise to flex my ankles a lot to keep the blood flowing, so then I got all paranoid and couldn't sleep anyway, because I had to make sure I was flexing. Every time I'd finally doze off, I'd awaken, whether because a nurse or other attendant needed to do something to me or my roommate (yes, it didn't help that it wasn't a private room), or my own discomfort, feeling Iike it must have been at least a couple of hours, only to look at the clock and find that it had only been 20 or 30 minutes. I thought morning would never arrive.

Arrive it did, as it always does, along with friendly hospital volunteers who brought around newspapers and warm wash clothes (nice!) and an attendant with what passed for breakfast (not so nice!). I managed to down the jello and a few sips of tea, the first food I'd had for about 36 hours. The doctor showed up around noon with show and tell -- my gall stones in a plastic bag. Lets just say, they did not look like the makings of anything that could be used to adorn the human body. The largest one was about the size of a grape, and the rest were like a handful of sandy gravel in variously-sized conglomerations. Good riddance, as far as I'm concerned.

I was discharged that afternoon, and alas, just three days later, I was already back at work part time. The miracles of modern laparoscopic surgery mean that what used to be major abdominal surgery is reduced to four tiny incisions. As of today, two weeks and two days after surgery, they appear to be almost completely healed. I can tell that things still have a way to go internally, as I am reminded whenever I try to do something that involves much abdominal strength, but barring those exertions, I have no pain and feel pretty much normal. There are no changes in diet necessary, and though some people find there is a period of adjustment, especially when eating extremely fatty foods, I haven't noticed any problems in that regard whatsoever. I dare say my body was already used to functioning without my gall bladder, since it was so full of stones it couldn't have been doing anything useful for quite some time now.

It's a beautiful Spring day, and I feel good. As I rode my bicycle to work today, I wondered what would have happened had these events transpired a hundred years ago. According to this interesting presentation, no one really knows why people get gall stones, although common factors include being overweight or losing a lot of weight very quickly, being a women with more than two children, being over forty, being Native American, Inuit, or Northern European, or suffering from condition such as Sickle Cell Anemia or Inflammatory Bowel Disease. Besides being female, none of the above apply to me (I've got almost a whole year until I'm forty!). So I guess I'm just lucky. Life is good.

My mother took him to the doctor, but they couldn't identify any particular ailment. The symptoms only grew more alarming as time went on. The changes were so gradual, we wouldn't realize he was getting worse until were suddenly faced with the reality that another daily life activity had joined the list of things my father could no longer do. I remember vividly the day I realized my father could no longer drive safely. One day my mother came home from work to find my father lying in the bedroom, where he had apparently been most of the day, unable to get up. There were more doctors, but still no answers.

There was a walker. Then there was a wheelchair.

My mom sold their home of 33 years, the house on Medicine Lake where I grew up, to move to a place that was wheelchair accessible.

Gradually, my dad's activities became more and more limited. He could no longer walk even a few steps unassisted, and he began to suffer from incontinence. His communication was limited to answers to direct questions (and then often only with prodding), and his behavior could only be described as childish. Travel was out of the question, and even outings to restaurants, plays, ball games, friends' homes, or other places they enjoyed became increasingly difficult. My mom struggled to get him in and out of chairs and cars. Still the doctors had no explanation. It wasn't Alzheimer's. They didn't even call it dementia. My dad, they said, simply had a degenerative neurological condition.

The wear and tear on my mother reached a breaking point, and ultimately, about a year and a half ago, she was forced to move my father to a nursing home. He was 65 years old. Since then he has continued his slow decline, speaking even less, and losing either the ability or the will to feed himself.

Meanwhile, my sister and I discovered we had both been diagnosed with another problem, equally inexplicable if less debilitating than my dad's. My doctor offered no explanation for Primary Ovarian Insufficiency (POI, also known as "Premature Ovarian Failure"), other than "it happens to some people." My own research, however, suggested there are indeed some known causes. In particular, I came across two that caught my eye:
1) POI can be caused by an autoimmune reaction. My dad has suffered from rheumatoid arthritis, which is an autoimmune disease. Could there be a connection?
2) POI can be caused by the Fragile X premutation. A cousin on my father's side has Fragile X Syndrome. Could there be a connection? And what the heck was a "premutation," anyway?

I mentioned these possibilities to my doctor, who ordered some tests. The results showed no sign of any autoimmune reactions. They also showed I didn't have Fragile X, which we were pretty certain of, anyway, as even though it affects males more significantly than females, the symptoms are usually pretty evident. The doctor didn't seem inclined to pursue it any further, but I wasn't convinced that we had fully explored or understood the possible Fragile X connection.

A couple of years went by. My regular doctor was on leave when I was due for a routine exam, so I ended up seeing a different doctor. I was given the usual medical history forms to fill out before my appointment. I checked off the usual response after the usual list of conditions like heart disease, stroke, cancer, diabetes, etc. When I got to the blank line with "other" before it, I decided to write in Rheumatoid Arthritis and Fragile X, since I wanted the new doctor to know about these pieces of my medical history, just in case they were significant. Sure enough, she latched right on to them. It seemed that the research I had been reading about had started to trickle down to the general practitioners. Whereas previously, my doctor had seemed complacent about finding a cause for my POI, now she took a muchmore aggressive approach, referring me to an endocrinologist to investigate the possibility of either an autoimmune condition or some connection with Fragile X.

The endocrinologist ordered more autoimmune tests, but they came back normal. He also did some research on Fragile X. I learned that it is caused by changes to the FMR1 gene on the X chromosome. The gene has a DNA sequence called CGG repeats. A normal FMR1 gene has up to 50 CGG repeats. An individual with over 200 repeats has Fragile X. If you have between 50 and 200 repeats, you are considered to carry the Fragile X premutation. Fathers with the Fragile X premutation can pass it on to their daughters (not to their sons, since it is on the X chromosome), and mothers who carry it can pass it on to their offspring as well. When passed from mother to child, the number of repeats can expand, potentially to the point of becoming full-blown Fragile X in their sons or daughters. Whereas the full mutation can cause mental retardation, autism, or learning disabilities, until recently, the premutation was believed to have no affect on its carriers. What researchers now know is that female carriers of the Fragile X premutation can, like my sister and I, develop POI. Although the test my doctor had done earlier showed I did not have Fragile X, it did not rule out a Fragile X premutation.

The endocrinologist also mentioned one more thing to me, almost as an afterthought. Recent research has revealed that older men who carry the Fragile X premutation can suffer from certain neurological problems.

Bingo! I started searching the Internet for research on Fragile X and neurological problems in men and there was the description of my father's problem: Fragile X-associated Tremor/Ataxia Syndrome (FXTAS). Ironically, my father had been asked about six years ago by doctors familiar with my cousin's case to participate in a study that would check to see if he carried the Fragile X premutation. The study was being conducted in California, so my parents arranged to have a blood sample sent there. However, they never heard anything back and they never pursued it.

After I told my mother about what I had learned, she started looking at the research herself. In one of the articles, she found the email address of the doctor who had asked for the blood sample six years ago. She contacted him and got a response back almost immediately. After reading a description of my dad's symptoms, he agreed it sounded likely that the Fragile X premutation could in fact be the culprit. He had a colleague check back through the records to see if they still had the results of my dad's test. They did. And guess what? My dad has
95 CGG repeats.

So now we know. My dad almost certainly has FXTAS. There is a name for his problem. A known cause. There is no treatment, but although my father probably won't benefit, there may soon be one. The doctor who conducted that study just received a grant of almost $22 million to develop one.

And now I wonder: Whereas Fragile X affects only 1 in 6000 males and 1 in 4000 females, about 1 in 259 women and 1 in 800 men carry the Fragile X premutation. That's a lot of people. How many of these men have been (mis)diagnosed with Alzheimers, Parkinsons, or some other non-specific dementia?

(via MNspeak)

If you know me (or if you have been reading this blog for a while) you know that the most important activity in my life outside of work is Scottish country dancing. You may not know that in addition to Scottish, about a year and half ago, I added a new form of dance to my repertoire: Rapper sword.

Rapper sword is a dance form that originated with miners in northeastern England. The "swords" are actually flexible strips of sprung steel with handles on both ends, originally used for scraping the dirt and sweat from the pit ponies. (Mind you, in case anyone from the Transportation Security Authority is asking, they are not swords but rather "flexible metal dance implements" or "FMDIs.") The dances are usually performed by groups of 5 dancers, who alternate various figures (different ways of weaving, and jumping or flipping over the swords) with percussive footwork called "jigging."

Rapper sword dancing has recently been enjoying an upsurge in popularity among young people, particularly in Boston and other areas of the east coast. During one of my visits to Pinewoods dance camp (see here for more on Pinewoods), I saw a group of teens from the staff perform a rapper dance during an evening party. I knew immediately I wanted to learn to do it myself. The following summer, back at Pinewoods, a class was offered. I quickly discovered it was harder than it looked (most things are), but my enthusiasm was not dampened. Back in Minneapolis, a friend and I succeeded in recruiting three other people and an unsuspecting fiddler to form our own rapper group.

The first thing we determined was that we would wear stripey socks. With that important decision made, we went on to less crucial things like learning how to dance. After a year of practice our group, which is called Duck or Grouse*, made its official public debut last Saturday at a pub crawl organized by Minnesota Short Sword, another rapper team here in the Twin Cities. A friend of one of the dancers made a video of our very first performance. Unfortunately, you can't really see our stripey socks (they are blue and purple!) but the dancing isn't too bad.

*If the name baffles you, this photo may help you understand why we chose it. Still confused? Read the 2nd definition of "grouse" here.

Some of the reasons I like winter:
- No yardwork (Yeah there's snow shoveling, but that takes a lot less time, even in snowy years like this one.)
- No mosquitoes (They search me out above all others from miles around in the summertime)
- Sunny days (We actually get a lot of bright sunny winter days in Minnesota, which is just gorgeous when everything is covered with a blanket of snow)
- That squeaky-crunchy sound that snow makes under your boots
- Skiing and skating (not that I've done either recently, but I like the idea that I could do them)
- The feeling of moral superiority I get as I, having already shed my hat and gloves. jog past the incredulously staring lone dog walker, bundled up to his/her (can't tell which!) eyebrows
- Watching suckahs get their cars towed for failing to move them from the streets on plowing days (Schadenfreude, baby!)
- Hot chocolate
- Snow! (Did I say that already?)

And my most favorite thing about winter in Minnesota: It keeps the riff-raff out!

I haven't been able to find an explanation for this, despite prodigious Googling. If I fall asleep during the day, I wake up feeling like something even the cat wouldn't drag in. Typical sensations are headache, dizziness, shakiness, and extreme nausea accompanied by a horrible taste in my mouth that tooth-brushing won't touch. It is exponentially worse if I nod off and am suddenly awakened twenty minutes later by a phone ringing or something else that startles me, but any period of sleep less than about two hours seems to result in at least some of the above symptoms. Interestingly, it doesn't seem to happen if I am already sick (e.g. from a cold) or if I wake up in the middle of the night having slept for only a short time.

About a year and half ago I started running (well jogging, to be more accurate), after about a 18 year hiatus. A few months after that, I wrote in an earlier post about my checkered history with the cross country running team and my ambivalent feelings about the sport. Over a year later, I'm pleased to say I am still at it, and my knees haven't cried uncle yet.

One of the unexpected pleasures I have discovered has been winter running. After running all through the warmer months of 2006, I didn't want to lose the ground I had gained once the weather got cold, so my first attempts to run in the snow were out of desperation to avoid the boredom of running on a treadmill at the gym. Although the late sunrise and early sunsets restrict most of my winter runs to weekends, to my surprise, I found that by dressing in layers I didn't have any trouble staying warm. It also helps that I live in close proximity to Minneapolis's "Chain of Lakes," and the city keeps the paths relatively ice and snow-free throughout the winter.

This winter, I have even run two races while it was snowing. On Thanksgiving morning, I ran the Drumstick Dash, which at 6 miles, was also the longest race I have ever run. I then went home and hosted Thanksgiving dinner for 17. This past Saturday, I did the Reindeer Run. The temperature was about 17 degrees and there was a nippy wind whipping off Lake Harriet. The snow started falling shortly before the race got underway, and there was about an inch on the ground by the time it was over. Of course I was running, so I stayed relatively warm. My devoted husband, however, who came to cheer me on, was not as enthusiastic about the whole "running in a winter wonderland" scenario. Guess who's getting long underwear for Chanukah?

(Just kidding, Dan).