Judging risk

Every treatment has risks associated with it. The big, bad risk for the treatment I’m on for MS is a brain infection known by the acronym of PML. It’s pretty nasty. If you’re lucky, you die from it. The ones that don’t are pretty severely brain damaged. When I had started my treatment, it looked as though the incidence of that side effect was 1 in 3000. In addition, the people that did get it tended to have a history that I didn’t have (previous use of immune sup present drugs). That’s not too bad of a risk although I would say that if given the chance to do something that had me dying in 1 out 3000, I wouldn’t do it in regular life.

The factor weighing on me from the other side is that I am in probably the worst of all demographics for MS outcomes. I am male, my symptoms showed up as motor skills first, and it also presented with lesions on the spinal cord. Looking at the data, people with those markers tend to deteriorate faster and end up less mobile than other populations. So disease management is important. Tysabri seems to be the only treatment worth a damn, despite the risk of PML, so that’s what I have been doing.

Now there is some new information out and it is making me question what to do. It turns out that all of the people that got PML also tested positive for JC virus antibodies. The JC virus is  relatively benign virus, unless you are doing something that compromises your brain’s immunity, then you can get PML. Last I read, about 60% of the population has been exposed to the JC virus. The new numbers suggest that if you have the JC virus antibodies, your risk of getting PML while on tysabri is 1 in 500.

That’s a lot worse than 1 in 3000. The risk of infection is still unlikely, but not as unlikely as I would like. The good news is that if I don’t have the antibodies, it doesn’t look as though I’ll be a candidate for PML at all, or at least until I’m exposed to to the virus… I got my blood drawn yesterday to test for the presence of the antibodies. I’m really hoping that they come back negative. If it does, I’ll continue doing my treatment. If it comes back positive, I’m not sure what I’ll do. Without treatment, there is a much better than 1 in 500 chance that I will be put in a very bad way from MS. On the other hand, it won’t kill me or damage my brain either. There really aren’t any other decent proven treatments out there.

So that’s the potential decision I’ll have to face, a more certain bad thing vs. a less certain very bad thing. Let’s just hope for a negative test result, that would make so much easier…

The power of suggestion

I was poring over some information on a new drug I was going to start when I ran across a fascinating table. It was listing the incidence of side effects with the drug as opposed to the group on the placebo. It was no surprise to find the drug had some side effects,what did surprise me was how there were side effects ascribed to the placebo as well. All of the instances of dizziness, upset stomachs, dry mouth, etc. in the placebo group had to have been caused by something else and yet I’m sure that those people blamed the pill they were taking because they were being asked about it. When they fill in the questionnaire about effects of the pill, any old thing that happened would be the pill’s fault.

Man, if I were in a study like that, I’d go crazy. I’m sure I would constantly try to outguess the study, to try to figure out if I got the placebo or not. Hell, I do that every day with MS. Any little twinge I feel I start to wonder if it is the MS or something else. It’s one of the more maddening aspects of this disease, it could manifest itself in almost any way.

My doctor threw in another wild card for me yesterday. I had just started to take some samples of the pill I mentioned earlier and I was talking to him about how it affected me. One thing that I noticed was how hungry I felt when I took the pill. That confused me because I thought that stimulants were supposed to suppress appetites. I haven’t really felt hungry for a long time now. I do feel the effects of being hungry, but I don’t really feel hungry if you know what I mean. One other thing that I mentioned was several times during the past week I suddenly felt as though I was on the verge of tears without knowing why. I wasn’t sad, or morose or anything, and the feeling passed fairly quickly. Still, it was unnerving. I figured it was a side effect of the pill. The doc pointed out that if I had felt that on a day I hadn’t taken the pill it wasn’t the pill. Hmmm..

He mentioned some syndrome about as long as my arm that described patients with lesions in the frontal lobe experiencing the physical aspects of emotions without feeling the emotion itself. Ugh. He checked my latest MRI and said he didn’t see any evidence of that. Whew!

Then he asked, “Do you think you’re depressed?” Well no, not really. He said that some of the symptoms fit, tiredness, cloudy thinking, lack of appetite, desire to sleep all the time… On top of that he also told me that some tremendous number of MS patients are also clinically depressed. Sometimes that’s from coping with a chronic condition, but other times it can actually stem from physical changes in the brain.

Great. I really don’t feel depressed, or morose, cynical, or anything like that. Yes, I do get blue and upset over my condition but I’m mostly optimistic in my life. Still, there are a lot of other symptoms that I have… Grrr…. Now I’m wondering if what ails me on any given day is MS, or depression, or maybe MS related depression, or MS caused depression…. Oh and guess what, there are pills for that too! I’m so sick of being offered pills, I’m so sick of worrying about juggling side effects. I am really leery about mood altering drugs. Anytime prescriptions for a certain type of drug skyrockets over a short period of time I am very suspicious. Anti-depressants certainly fall into that category.

My doctor did speculate that one of the reasons I might have felt hungry when I took the stimulant was that it lifted my mood. If my appetite had been surprised via depression, that would make some sense. Of course that also feeds into the suggestion that I actually am depressed but don’t realize it. For now, I am going to try this new pill and see how that works. I am going to continue to put off anti-depressants until there aren’t any other options, or until I convince myself that I really am depressed. Ugh.

The 99%

Reading last Sunday’s Doonsbury really got me pissed off. Once again, Trudeau is hung up on what the top 1% income bracket is making. When BD finds out that the top 10 hedge fund managers were paid 18.8 billion, his reaction is, “It’s game over – The Rich Won!”


Funny, I didn’t realize we were competing, or playing a game or whatever. What, exactly have they won? And how are we less better off because of it?

BD keeps ranting, “Might as well just send them the rest of our money now, They’re going to get it all eventually anyway!” Umm, right, because those evil hedge fund managers were raiding your checking account, right? They were hoarding all that money so that you couldn’t get a sot at it, is that it? How is BD, or the rest of us for that matter, involved with hedge funds? How have they impoverished us? Why the assumption of guilt, why the feeling of being personally attacked?


I would be very sympathetic if Trudeau were to detail how much money people made off the bailouts by the US tax payers. Through the government;s largesse, a few politically connected groups had their fortunes protected with our tax money. As unfashionable as it may be, I don’t mind people making vast sums of money through voluntary transactions. If it is voluntary, it doesn’t affect me. If my masters DC decide to protect cronies with my money, that is theft. Why isn’t Trudeau angry about that? Why isn’t BD making his check out to the Treasury? The hedge funds are leaving him alone, the feds aren’t…


The OWS crowd have been using the 99% rhetoric to great effect, but once again, I think they are misguided. When Steve Jobs died, several reporters asked some OWS folks what they thought of him. The reactions were overwhelmingly positive despite the fact that Jobs was certainly in that 1%. I like to think that if pushed on the matter, most of those folks would admit that Jobs did it right. He made stuff that everyone wanted and became rich doing it (and pulled lots of people out of poverty along the way). He never went to the government for help, even when Apple was on the verge of bankruptcy. Jobs wasn’t alone, there are plenty of entrepreneurs in the 1% that have provided services and goods for us. So why rail against the 1% when there are clearly great people in there? Why not protest against the people that get money from us without our permission? Why not protest against the ones giving away our money without permission?


Why indeed. People that make money by providing us things are great, people that essentially steal are not. Why are the two so often confused with one another? When will most people see that the dirtiest money flows out of DC? Why don’t people protest that? Oh right, they did, and got called racists for their trouble…



Occupy Wall Street

I’ve been reading about the OWS protests and the one thing that is clear is that they are not a monolithic entity. There is general discontent over “Wall Street” and how they profited during this downturn, and there seems to be a general stance against “capitalism” and corporations. a more nuanced view seems to be that only “bad” corporations are the target of their ire. A generally accepted solution to this is that the government should do more, more regulation and more observation are what the protesters seem to be calling for the most.

You might not be surprised to hear that I don’t agree with their solution. I agree with the anger over bailouts, over saving failed companies with taxpayer dollars. The difference is that I direct my anger towards the ones that did the bailing out and set up the system that encouraged the financial entities to take the risks they did.

The OWS crowd seems as though they are so blinded with their view that Wall Street equals greed that they have never wondered why the banks and financial houses did what they did. The combination of low interest rates, guaranteed loans, and various regulations that made it profitable and logical to sell off and re-buy derivatives of mortgages was set up by the federal government, and then the feds bailed out the institutions that got into trouble doing that. Wall Street will always be about making money, but when there are actual risks of losing everything, they will not act so crazy. The bailouts have to stop, the distortions have to stop. Turning to the cause of the problems for a cure is incredibly misguided.


It’s also funny how the various anti-semitic signage seen at these things has been dismissed as crazies in the midst of the protest, unlike the tea party. One group is labeled as racists for their fringe and another is given a free pass over the crazy ones in their midst. It’s also strange how there are widespread reports of arrests of the OWS crowd when there wasn’t with the tea party crowds despite the fact the tea party had bigger gatherings.


So yeah, I’m with them on the anger about corporations profiting at taxpayer expense. They have lost me on the whys and the solution though.

Planning for disaster update

Ok, the moment I withdrew the bulk of my portfolio from stocks, the market went on a bull run. Grrr.. That’s the thing about being conservative, you avoid the downside, but you miss the breakouts too.


Still, noting has changed for the better in Europe. There’s still a lot of shuffling of deck chairs over there. It all looks pretty flimsy. Greece is still on the verge of default, and there’s no telling how that is going to affect the rest of Europe, but it won’t be good. Both Italy and France are facing downgrades on their debt. In response, the ECB is about to ban the reports of downgrades… Like I said, I’m still sure of what is going to happen, we’ll see how the next 4 or 5 months play out. I’m still sitting on mostly cash and I think that will be the best position when the events in Europe start to unfold.

Planning for disaster

From Megan McArdle’s blog:


“In an interview with IMF advisor Robert Shapiro, the bailout expert has pretty much said what, once again, is on everyone’s mind: “If they can not address [the financial crisis] in a credible way I believe within perhaps 2 to 3 weeks we will have a meltdown in sovereign debt which will produce a meltdown across the European banking system. We are not just talking about a relatively small Belgian bank, we are talking about the largest banks in the world, the largest banks in Germany, the largest banks in France, that will spread to the United Kingdom, it will spread everywhere because the global financial system is so interconnected. All those banks are counterparties to every significant bank in the United States, and in Britain, and in Japan, and around the world. This would be a crisis that would be in my view more serrious than the crisis in 2008…. What we don’t know the state of credit default swaps held by banks against sovereign debt and against European banks, nor do we know the state of CDS held by British banks, nor are we certain of how certain the exposure of British banks is to the Ireland sovereign debt problems.”


Sounds pretty dire. The good news is that it is two to three weeks away. If you’re going to have a banking crisis, it’s best to have it in slow motion. I’ve been worried about this for a while and it struck me the other day, this is an ideal investment situation. There’s no reason to go down with the ship. I liquidated the vast majority of my holdings in my 401k and am now mostly in cash. I closed out my stocks with a small profit. Now I’ll wait until things implode and buy when stocks are cheap. Foolproof, right?

Welllllll, there’s one little problem. My cash is actually held in a money market fund. Those are usually considered the safest types of accounts and are treated just like cash. The potential problem is that if the credit default swaps (essentially insurance against going bankrupt), are what the above paragraph was taking about, that’s the counter party risk that can bring down the banking system. If a CDS needs to be redeemed, money sitting in money market funds will be a likely place to get the money necessary to pay out the claims. Oh, and my 401k isn’t FDIC insured, so if the money market goes away, so does all of my retirement.

So what to do? I really don’t feel like losing a lot of money like I did the last time the stock market melted down. I was overseas and out of touch in 2008, this is unfolding slowly enough that I feel like I should be able to avoid it. My plan is to act quickly once things look bad. I hope to buy as soon as things tank.


Of course if we’re all lucky, this won’t happen. I won’t be in any worse of a situation. I do want to be prepared if things come to a head though. Hang on to your hats folks, this could get rough. Oh, and stay away from bank stocks:)

Another great music service

Spotify is the later music service to get my money. I already subscribe to LastFM and Slacker Radio. Slacker is a great way to hear new music and LastFM gives me a radio station based on my own curation. Spotify lets me listen to any song any time I want to.

Yeah, any song I want, any time I want. How amazing is that? If I hear a new song, I can look up the artist and listen to any of their albums. That’s in addition to all of the older stuff too. For 10 bucks a month I get no ads and can stream the music through my iPhone and squeezebox. I thought I had a big collection before…

The last couple of nights I have been going through Aweditorium on my iPad, finding interesting artists, and then looking them up in Sporitfy. It’s a great combo. It’s true that Spotify doesn’t have everything,. They don’t have any Beatles or Led Zeppelin but that’s hardly the end of the world. Plenty of people would tell you that’s a blessing. And it’s true my favorite Flamenco album and a live Cynics albums aren’t in there either, but those are a little bit obscure. A little more worrying is the absence of A Joy Division album called Warsaw. I’ll have to do some more digging to see how many albums aren’t in there.


As it stands right now, I’m having a hard time figuring out what I’ll be using iTunes for. Yes, I do have a few things on there that aren’t in the streaming version of Spotify, but Spotify also allows me to use my iTunes library on my computer and I can sync music to my phone with it as well. I’m pretty sure Spotify has a higher quality bitrate as well… I don’t think I’ll actually erase my iTunes library, but I doubt I’ll be playing it very often.

If you haven’t yet, check out Spotify, it is amazing.

RIP Steve

When he announced that he was stepping down from CEO, we knew it wasn’t a good sign. Still, the news wasn’t any easier to hear. I have loved the products he has helped bring to market, but more importantly I love the institution he has left to us. To borrow from John Gruber, Apple the company is Steve’s greatest creation.

Steve, I thank you for your vision and the opportunity to take part in what you started.