Cure CJD

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

You’ve seen someone die of CJD so do you have PTSD?

I want to write my “holy crap it’s been eight years” blog post. Before I get to that, a more pressing issue that I think will help others much more.

In eight years, I only experienced what I think of as a “PTSD flashback” once. I didn’t think it would happen again unless I faced the same trigger. I believe it was 2007 (the years melt together) and I was in whichever class it was at Boston University in which I had to watch the film “Hilary & Jackie” for an assignment. This particular movie features a character who suffers from multiple sclerosis and who therefore has on-screen seizures. Seeing this in a movie — not even real life — was enough to push me over the edge because it looked so similar to what my mom went through. It gave me an anxiety attack. This only happened to me that once and I never thought of it again until this week.

My mom was diagnosed with CJD on November 2, 2004 — election day. Bush vs. Kerry. Since I didn’t know my mom was “really” dying yet, I went to work that day in the newsroom where I worked. I got out at 11:00 am and went to vote, then I went to the hospital to wait for the diagnosis. I waited all day and it came around 5:00 pm. I was just very determined to work and vote that day in spite of what I may face later. I think at that point I was still clinging to the idea that I might still have a normal life.

That was eight years ago. I get through each anniversary in my own way. Each year is different. I think the first one (2005) was the worst since it was only a year and my dad was remarrying so quickly. This year, I just felt like I was the most at peace I have ever been about it all because I had done my part to help research at UCSF and with the Red Cross. I feel like I have taken more control of my own destiny therefore and that I have at least done what little I can do to help fix this. Despite what I have done and the eight healing years that have passed, I had trouble this week.

I had what I will call a “PTSD flashback” on Tuesday on the way to vote. I felt like I did in 2004. I felt that pain like it was fresh and I was back in Phoenix on election day 2004 and it was Bush vs. Kerry not Romney vs. Obama in 2012. I had to get a grip on reality and realize I was in 2012 and Wichita, Kansas. I was far away from the experience of eight years ago, so why did it feel so fresh?

Again, I ignored this. How could this possibly happen to me again after five or six years or however long it’s been? I’m not keeping track. I didn’t see someone have a seizure. Do I have other triggers I am not aware of?

Many of us who have witnessed what CJD does to the human body, to our loved ones, have talked amongst ourselves about how we suspect we have PTSD. Has a medical professional diagnosed me with this? No. But I know what it is. It seems to happen to me on a situational basis. It’s so rare that I don’t get it. We all have problems dealing with the anniversary of the death of a loved one. So I chalked it up to that and forgot about it again. I had other stuff going on in my life this week, thank goodness.

Then Friday morning, a friend of mine and I are together and he gets the call — this is it for his mom. Seeing him go through that emotional roller coaster in a span of five minutes was apparently another trigger for me. Friday would have also been my mother’s 64th birthday, Saturday the eight anniversary. I had another “PTSD flashback” in which I felt like it was 2004, my breathing got heavy, and I had to tell myself over and over that it is 2012 and I am in Kansas. Click your heels, there’s no place like home. 

I got through it. I knew instinctively what it was and I was able to keep myself from going over the edge. I anchored myself to my surroundings in every way I could. I kept my eyes open, noticed every detail around me, kept telling myself over and over, “It’s 2012 and I am in Wichita, Kansas.” It was my mantra. It kept me anchored to the present.

Is this good enough? Hell no. If you think you are suffering from PTSD after losing a loved one to CJD, get help. This can be very serious. I’ve received a lot of help over the years, which is how I have been able to help myself on instinct.

The reason why I am even bringing this up is because of two things:

  • For the same reason I even have this blog, I bring up the things everyone else is afraid to talk about.
  • People don’t talk about CJD. But even fewer people talk about PTSD. I don’t think it’s anything to feel shame or embarrassment about. I’m not saying I don’t feel some weird negativity about it like I am flawed because that’s exactly how I feel.

Why do I feel this way? I don’t get it. I have never been to war. I think of PTSD as something that happens to veterans or people who have been victims of extreme violence. So what gives?

I think this page I found explains it best about how it feels and how I’ve managed to deal with this in the past week:

I understand that seeing another human being have a seizure is going to be enough to throw me into flashback mode. That has only been a problem one time in eight years and isn’t something I am likely to see much of in my lifetime. I do not understand my other “triggers” that happened this week. I think these were calendar-related triggers. Election day and my mom’s birthday? Apparently those are days that are enough to bring on some heavy emotions. My mom also died the day after her birthday. I guess that’s a lot. Yes, eight years have passed since she died. But this was only the second election since she died, so maybe I am just not “used to” election days in my post-CJD world.

Seeing someone die of CJD is very emotionally scarring. It’s different than anything most people have been through. Seeing someone have a seizure isn’t just seeing a person have a seizure. It is really (to those of us who have lost someone or several family members to CJD) seeing that person die a rapid and debilitating death that takes away everything that makes you human in an instant. There’s an extra element of trauma with CJD for caretakers that you don’t get with other diseases. I think it has to do with the overall lack of understanding from the medical community that makes everything so much more stressful.

I don’t think there’s ever been something else in my life that has involved more stress and fear. Not car accidents, earthquakes, fires, floods, tornadoes, any scary medical situation or dangerous situation I have ever been in. Nothing — and I mean nothing — has ever felt like it did to see my mother suffer in the way she did for that month and two days in which she suffered from CJD before death. It has been eight years and I still don’t understand my own emotional scarring from it.

That’s why I am writing this today and every day. Something I write here might help someone else go through this. Maybe this can also help others who are trying to understand someone (friend, coworker, loved one) who is in the position I was in/am in. Be gentle with that person if you are going through this and be kind to those going through it. That’s all I ask.


November 11, 2012 - Posted by | Uncategorized | , , , , , , , ,


  1. IM very confused. You said several family members also died of cjd and that your mothers illness lasted several months. From everything I’ve read the familial type of cjd that runs in families lasts up to fourteen months and the acquired type kills with in a few months. My mother died of familial cjd in 1991 after an eighteen month nightmare. Its been years since I’ve felt up to researching it and very confused and not liking what IM finding.

    Comment by Tammy emery | February 10, 2013

  2. I think you are confused. I’ve said in many blogs for many years now and to everyone I’ve met that my mother died in a month and two days. Our family mutation is E200K, the hallmark of which is a very rapid progression as well as a dry cough. Every mutation has a different progression and every patient is unique. I suggest reading information from sources you can trust like medical journals and also reading the most up-to-date information. I am not familiar with every mutation of fCJD, I just know about the one that affects my own family. My mother’s brother also died rapidly. I am unaware of how long their uncle suffered with CJD as we had no relationship with him at the time and we were only told he “died of mad cow disease” through the family grapevine after the fact.

    Comment by CureCJD_Heather Larson | February 10, 2013

  3. i am so very sorry for the traumatic loss of your mom. i also lost my beautiful 72 yr old mom in january. she died within 3 months of symptoms and suffered so terribly ( 5 trips to the er and they kept telling her nothing was wrong with her) all the tests showed nothing. her suffering in combination with extreme frustration with not knowing what was happening was tremendous. i also think i may hav ptsd. ( i am being treated for major depression currently) i actually remember falling to my knees unable to really function the last time the paramedics came. after that i hav absolutely no memory of what ir where i was for approx 4 days. ( this is what my sister told me) i wanted you to know that after reading what you and your mom went has helped me somewhat..thankyou ? i do not feel as alone . i hope that you are feeling better now. i understand completely regarding this awful disease, the suffering and trauma..i do not understand however the lack of care and the inabilities for straight answers frim the medical communitues at all. it’s completely unacceptable in my opinion. my mom was in great shape worked out at the gym 3x’s a week for many years right up to the onset and all the dr’s she saw said there was nothing wrong ??!!!? she was delerious, had’nt slept in nearly 8 weeks, myoclonic jerks with her right arm, severe rapid dementia, went blind and mute in 3 months and she was nit diagnosed ubtil approx: 10 days prior to her death. ( thank god for hospice) it is still all very very disturbing to me the way the medical community did not even notice how extremely ill she was. i felt as though the doctors were walking emotion at all.. ( i think i need alot of therapy for my iwn frustrations too) sorry i rambled on so much here…

    Comment by kim | April 15, 2015

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