Cure CJD

Heather Larson's experiences in helping find the cure for CJD

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

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April 14, 2009 - Posted by | Uncategorized

7 Comments »

  1. I couldn’t watch it. I tried to, but because my father is still alive I just couldn’t. My dad doesn’t understand what CJD is, in fact he doesn’t even know he’s dying. My mother doesn’t want to tell him because he’s so rarely aware of who he is, she thinks why ruin the few cognizant moments he has left? This is so horrible for me, because I can’t say a real goodbye.

    The hard lesson is it isn’t about me at all. CJD is a horrible way to die. I’m so glad you’re writing this blog.

    Comment by Catherine Skoor | April 15, 2009

  2. I am so sorry to hear about your dad. It’s definitely too soon to watch something like 24 for you right now. Be gentle with yourself–some good self love and pampering goes a long way during and especially after this crisis you’re in. You’re right in not wanting to ruin his last cognizant moments. My heart goes out to you and your family. My mom totally didn’t understand what was killing her. She was so confused and unable to communicate. Her brother, just four years later, knew what he was dying from and that he didn’t have long. It’s the biggest heartbreak a family can go through. We also didn’t get a proper goodbye with my mom in our family, especially because the E200K mutation takes a person so fast. My mom’s course of illness was a month, same with my uncle. (By the time they needed to hit the ER, but symptoms had come on mildly in the weeks before, two months in hindsight give or take). I savored her every laugh or sound at the end and any look she gave if her eyes were open. Thank you for commenting. It’s very brave of you considering you’re right in the middle of going through this. That alone shows you’re stronger than you know.

    Comment by omkicker | April 15, 2009

  3. Thank you for sharing this. I am the Project Manager of the CJD Support Group Network in Australia, and likewise, from a genetic family, having lost my Dad in 2004.

    I don’t watch 24 personally, and from what I understand, due to the seasonal difference, i.e your ratings season hits before ours, given our winter is your summer, I don’t think we are showing the series you refer to as yet, but I’ll check now. Thanks for the heads up. My sister is a big fan and I’m sure she would have mentioned. Yeah, I don’t know. Personally, I’m prepared to cop the “Mad Cow” labeling etc, and if the media doesn’t always get it exactly right, so be it. It’s awareness raising nevertheless, and if for the most part it’s reasonably accurate, there will be many more people who have heard of the disease after they see the show and maybe, just maybe, they’ll go and read up on it and familiarize themselves. Having said that though, after reading some of the things that happen in the story line, much of it really does not sound terribly credible!

    Comment by Mandy Newton | June 23, 2009

  4. Hi Mandy,

    I hope you get to see this season of 24 soon. It’s pretty good. I think lately I have been really bothered by the media’s use of the 1-in-1-million statistic more than anything. But I’m happy for any publicity for this disease at all. Raising awareness is key.

    The show is definitely tweaked to work for TV, which I get upset about, but my friends keep reminding me it’s a TV show. Of course, I am bothered by factual errors or anything completely fake in any movie or TV show. I chalk that up to a lack of research and creativity.

    Comment by CureCJD_Heather Larson | June 24, 2009

  5. I am trying to contact Mandy Newton to discus the letter that she wrote about her Father. My Grandfather just passed away from genetic cjd about a month ago and I am trying to figure out if all of the family needs to be tested for this disease. Can someone give me some insight into genetic cjd? The dr. thought it was vcjd until the autopsy just came back yesterday and now the family is a little panicy!!

    Comment by Stephanie Guillot | October 16, 2009

  6. I am not familiar with the Many Newton letter; but I’ve also been out of touch for a couple weeks trying to move and deal with some stuff. I am so sorry to hear about your grandfather. I recommend contacting Deanna Simpson at CJD Insight. The list of family members she has lost to CJD totally smokes mine…she’s also a nurse, so she knows her stuff. I’ve talked to her before and she’s just wonderful. Check out:

    http://www.cjdinsight.org/

    It’s understandable that your family is in a panic. Mine was too, in the beginning. I recommend giving yourselves some time and space to grieve before making a decision about going after test results. Results bring either more grief or survivor’s guilt, so there’s no easy way to deal with it. Of course, any of us can be hit by a bus crossing the street any day. Definitely DO make sure your affairs are in order, like wills and power of attorney. These are things we should all have done anyway.

    I have personally not gotten tested because A) it’s expensive and B) I just don’t see the point. If I come back positive, there’s nothing I can to prevent or cure the disease. I’ve got an acceptable level of life insurance for my age and really no reason to have a will as I don’t own property or have children. I’m still young, so this will change over time. I’ll up the life insurance and make sure my papers are in order. I always think ‘I’d love to get the test done to find out I’m negative!’ But if it’s positive, I don’t think my father would want to know and it wouldn’t be fair to have that hanging over his head. Who would want to know their child is destined to go the same way their wife went? The odds are 50/50 that I am positive. I think there is a peace in not knowing and in not letting it get to me. But that’s just me five years after my mom’s death.

    Comment by CureCJD_Heather Larson | October 17, 2009

  7. I don’t watch 24, but I am watching my dad die from CJD. He was diagnosed early August and since then has become progressively worse. He is 63 years young. He didn’t get the chance to enjoy retirement. He was sent home from work one day and hasn’t been back. He can’t see well, he can’t speak well. It is breaking my heart. My mom has been with this man for 44 years. Now she is watching each and every day slipping further and further away. I don’t understand how this has happened. Will I get this, will my kids get this? Its a horrible disease. I’m afraid I won’t remember who my dad is. Now all I see if a man who put a fork to his mouth with absolutely nothing on it. He laughs at times where its has been silent. He is silent in a room where there is conversation going on. My dad has raised his family in church, pays his tithes, witnesses to people…why does he has to leave me. I still need him, he still has a work to do here on earth. Why is this happening to our family…what will my mom do without him. How am I suppose to go on?

    Comment by Janette Dennison | November 14, 2009


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