Fox’s 24 Presents Good Example of CJD

NO SPOLERS! Don’t worry, 24 fans, I have your back!

This time around, I want to touch on four standout details from this episode of 24 while also sharing how each hit home with my own personal experience. I witnessed my mother’s death by CJD in the fall of 2004, nearly five years ago. I think it’s great that the show can raise awareness about CJD and all prion diseases. I also think, for the most part, that the show is staying true to what the experience of witnessing this disease is like for the characters. I think watching Jack Bauer experience his death by CJD seems to mostly be holding true to form–save for the fact that prion diseases don’t really kill in hours or days. I just wish the show would mention CJD by name more often just to raise awareness. However, I am glad they aren’t dropping the phrase “mad cow disease” so we can get away from that stigma. This has been done with class. Thank you, writers of 24.

I love Fox’s 24. I love Jack Bauer and I have watched every season of this show. I even was once so lucky as to interview Carlos Bernard in person at Universal Studios during the finale week of the second season of American Idol. I was star struck talking to the man who played 24’s Tony Almeida! I even slipped and called him ‘Tony’ in the interview instead of Carlos. I was so embarrassed when I played it back to edit it before it went on air. (And embarrassed once again when it ran on air!) If I remember right, I gushed like a nerd about the show in the interview too. Total fangirl. Just wanted to make it clear to you how much I love this TV show.

Because it’s getting hard to watch now.

It hurts now to watch 24. With this past episode (#18, air date April 13, 2009), my worst nightmare has been played out on a TV screen. I don’t need to go into detail and that’s out of respect to not offer a spoiler to those who haven’t gotten to their DVR’d shows this week yet. I have imagined this scenario as the worst possible thing that could happen and I feel completely naive saying this, but it freaks me out to no end that someone else has too–and is playing it out in a major TV show. Of course, anyone who has seen even one person die of CJD (any mutation) knows the frightening variables at play and how badly they could go wrong. Anyone who has witnessed this can dream up the worst case scenario. Reality check: I am not alone.

One thing that feels like a punch in the heart is seeing Jack Bauer understand what he is going through. He, unlike many CJD patients, knows and fully understands exactly what is happening to his body. It gave me chills when he told the doctor character that, “I feel like I’m losing some part of myself.” That is something the show hit dead on. I swear, whoever is writing this series knows what it is like to lose someone to CJD. Putting that line in there showed that to me; I don’t even think it’s possible I’m wrong about that. Someone wrote this show to bring attention to CJD and to avenge a loved one’s death. Bravo. If I’m wrong, I’ll eat my words. But I really doubt it.

Watching someone die of CJD is like watching everything that makes that person human being rapidly ripped away. You lose your ability to walk, speak, hold your bladder, remember things, and you get agitated. You lose your balance. You shake–it’s a symptom called myoclonus. Jack Bauer asks the doctor if there’s anything that can stop his memory loss like that drug she gave him to stop his shaking. She tells him there is not. That is very much like real life; there isn’t much medicine can do to stop the symptoms. Though when my mom got to Barrow Neurological Institute, they gave her some type of seizure drug that stopped the jerky muscle movements (mycolonus) and seizures she was having. But it isn’t like the slow train goodbye, a.k.a. Alzheimer’s Disease. At least with AD, you can administer memory enhancing drugs in the early stages. That is because AD is slow. But CJD is so fast, memory drugs are useless.

When Jack gets mad at Renee for calling Kim to come to the FBI and pulls her into a room to yell at her, I wonder if that was written in to show the breakdown of his personality as CJD takes hold. Becoming agitated is a symptom of CJD. My mother got extremely agitated very quickly as she was dying. She even got so mad once that she hurled a water bottle at my uncle–who also died of CJD last year. (For those just finding me, CURECJD.org, and this blog, my family carries the genetic mutation of CJD, called fCJD for ‘familial,’ mutation E200K).

The final thing I want to point out about this episode of 24 is how he gets done yelling at Renee, becomes calm, and then asks her to show him down the hall to where Kim is. I think this is because Jack is becoming disoriented and losing his confidence in being able to get around on his own. My mother was also like this, but her symptoms were much more obvious than Jack Bauer’s are so far. She would stay seated with a plastic bag in her office complaining of dizziness and nausea. She had no confidence in her ability to make it to the bathroom and vomit if she had to do so. She never did vomit because these were just neurological symptoms and not gastrointestinal. At the time we didn’t know the difference because we just thought she had multiple sclerosis, Parkinson’s Disease, or early onset Alzheimer’s disease. We didn’t realize then that she had a fatal neurological disease and would be dead a month later.

I wish I could blog more about this today. I didn’t even touch on the idea of Kim donating stem cells to Jack. That will have to be for another blog because I’m out of time for today. Thank you for coming here and reading this. I hope you take what I’ve shared here into your heart and mind the next time you are watching 24. I hope as you watch that you realize this is a real disease that affects real people and that this is happening to families all over the world every single day. People of all ages die of CJD, all walks of life, all geographical locations–no one is immune. Thank you for reading this blog. Please comment and share if you would be so kind. My email address is below for those who aren’t brave enough to leave comments.

Heather Larson

hotwords [at] mac [dot] com

Jack Bauer and America Meet CJD Through Episode 16 of Fox’s 7th Season of “24”

It’s going to sound sick, but I’ll admit it. Many of us have said for the longest time that no one is going to care about CJD until someone famous dies of it. The next best thing is Jack Bauer on “24” getting it. Actually, this is even better because a real life person isn’t dying of CJD on “24” and the fictional show illustrates the worst-case scenario of what the disease could hypothetically do if there were a mutation that killed in two days. Such a mutation doesn’t exist, thank goodness. I thought I’d use this blog to educate others about CJD–the real disease–and not the creation of the writers at Fox. (Though I am forever indebted to the folks at Fox for bringing attention to CJD. Actually, my educated guess is that someone involved with the show is connected to CJD on a personal level, otherwise they wouldn’t have come up with the idea).

I’m now going to go through what on the show was and wasn’t realistic about CJD so that people don’t get the wrong idea about what it is really like to deal with this fatal neurological disease. On TV, we see Jack Bauer getting washed down with a hose by the CDC. In reality, there is no decontaminant for CJD. There is no magic solution to wash infectious prions away. Now I’ll break down the rest in detail:

The Video of People In Sengala with CJD is Realistic

The show is right in talking about how there is no cure for prion diseases. It also talks about the people in the fictional country of “Sengala” and how the corrupt government tested the infectious agent on them. They subsequently suffered dementia and paralysis, which was illustrated in a video we saw President Taylor watching in the Oval Office. What you see in the video of the people shaking and crawling on the ground drooling is what it is really like for a patient to suffer from CJD.

Testing and Clinical Diagnosis of Jack Bauer’s CJD

Where it gets dicey comes with the testing and diagnosis of the disease for Jack and this is obviously done this way for the purpose of running this show in real time. The CDC doctor is telling Jack Bauer that she wants to test his blood, saliva, and spinal fluid. Obviously, Jack Bauer doesn’t get a spinal tap to test for the 4-3-3 protein indicative of a prion disease, be it variant, iatrogenic, sporadic, or familial CJD. No test could tell you which mutation a patient has–if a clinical diagnostic test even existed in the first place. And Jack didn’t have a spinal tap done, otherwise he’d be laying on his back for hours. A blood or saliva sample can’t be tested for CJD. The only confirmation of CJD unfortunately comes from an autopsy, however, while the patient is still alive and all other routes have been exhausted, a brain biopsy is done to test for the disease. You get a probable result back and confirmation post-mortem. As you can see, getting a preliminary test result back in 15 minutes is as fictional as the country of Sengala. I know this is done to move the pace of the plot along, so I’m not mad. I’m just happy the show brings some attention to CJD at all, as I’ve been raising awareness about the disease since my mom died of it in 2004. I just want people to realize that what a family goes through when trying to diagnose a loved one with CJD is much more time consuming, frustrating, and downright dysfunctional.

The Contamination Around The Truck

The area of contamination around the truck Jack Bauer was driving would have been permanently ruined in real life. There’s no cleaning this stuff up. Bleach doesn’t kill prions. There is, from my understanding of the research I’ve read in the last few years, a detergent in the UK that can kill prions. We don’t have it in the U.S.–and this could have changed since I read about it, of course. Once it’s in the soil it doesn’t go away. Once a farm is contaminated, it’s always contaminated. I think the show downplays this like CJD is something like Anthrax that could be contained and cleaned up. It can’t be done.

The Two-Day Killer?

There is no strain of CJD that kills in two days. All of us who have seen the horror of a loved one dying of CJD have realized what terrorists could do with this disease. But it would never work because the incubation period is long, not that any two experts could ever agree on what that time period actually is. The disease can kill quickly, but not in as little at two days. The genetic strain my family carries kills the patient about a month after they realize something is wrong. My mom thought she had multiple sclerosis when she went to the emergency room on October 8, 2004. She died a month and two days later of CJD on November 10, 2004. Many people I’ve talked to have lost loved ones over a period of many months, as much as 18 months even. It’s like a condensed Alzheimer’s disease. Where’s Alzheimer’s is “the long train goodbye,” CJD is   “the bullet train goodbye.”

The Terrorism Question

CJD could only be useful in a dirty bomb like we see on “24” if the incubation period were immediate (as in mere hours) and the length of the disease were condensed into a two-day period. End of story. Anyone who has been exposed in real life, from meat inspectors to neurosurgeons, are all human experiments; no one dies instantly. We don’t know if the exposed will get sick in 5, 15, or 30 years. That fact kind of takes the wind out of a terrorist’s sails.

It Raises a Real Concern

This is my personal opinion on what Fox’s “24” changed for me after I watched the show last week. I should say that this has been my favorite show for years. I’ve always watched and will continue to watch. I know with the current state of world affairs and the global economy right now, it’s very easy for us to say that here in America we should worry about fixing our own problems now. It makes sense to say, “Let’s bring home the troops and stop sending our money to foreign lands like Iraq and Afghanistan. Let’s stop helping those people and helps those who are starving and impoverished here first.” I admit it, I’ve been thinking that way lately.

But seeing this episode of “24” brought it home for me and made an interesting connection. We have to care about wars in other countries, human rights, and genocide. Sudan comes to mind. What if a dictator in Sudan did manage to test a two-day strain of CJD on people he wanted to “ethnically cleanse” there? The show’s “Jooma regime” testing neurological pathogens on the fictional people of “Sengala” is no different than the experiments the Nazis performed on the Jews during World War II.  So this is why we have to care about the wars and genocides in other countries like Sudan right now. Because someone somewhere could be testing out a potential weaponized strain of CJD or some other horrific disease. I think it could happen. I hope the best brain trust in the world is working on the cure for this disease, but in case it isn’t, I want people to understand that the worse-case scenarios have the potential to happen. It’s an eye-opening and different perspective that we can’t afford not to entertain.

This show for me definitely highlighted a bigger picture of how CJD could be interconnected with war, the global community, politics, and human rights. Right now this is still a “rare” disease that impacts 300 or so “older” people each year in America (though 20-somethings die of it too). Under the wrong conditions, it could grow into something much worse with a bigger impact. Even I forget that this threat is still there. Thanks to “24” for making me realize it once again like I did after this first happened to my family. I hope I never see this disease make a bigger impact than it already has in the world. I’ve always hoped brilliant scientists could cure it and squelch its threats before it could have the chance.