Cure CJD

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

Allow me to introduce myself

My name is Heather Larson and you may already know me from CJD Voice (a Yahoo group), or my first blog on CJD that is now over two years old (and very dead), http://cjdtalk.blogspot.com/.  Or maybe you’re a doctor I spoke to at Barrow Neurological Institute, or maybe you know about my family.  Perhaps you found this blog about CJD via Twitter, and I thank you for stopping by for that reason.  Because I assume if you found me on Twitter, you’re one of my friends and have probably not heard me say much about CJD or haven’t heard of it.  I’m always glad to raise awareness of CJD, so I’m very happy you’ve found my new blog.  

My mission

My mother died at age 56 on November 10, 2004 after suffering through a mere month and two days in two different hospitals.  On October 8, 2004 we thought she has MS or Parkinson’s or early-onset Alzheimer’s disease.  We were very wrong and she died very quickly.  Unfortunately, there was nothing we could do; my family carries a genetic strain of CJD and the disease has no known cure.  My mission is to help find the cure.  I’m no doctor or scientist but I write.  I may not handle the test tube that contains the cure, but I can write about it.  So I’m here to raise awareness about CJD, get people interested in my cause, and see what I find along the way. It’s a start–and we have to start somewhere.  

Why now? 

I’ve blogged about CJD before, I’ve networked with my fellow CJD families, and I’ve done some volunteer work.  But I have a 50/50 shot at seeing age 60 (more on that later).  So for the past few years, I’ve been busy living.  I’m even busier living than ever before and some days I just don’t feel like being bothered by CJD because, on a certain level, I’ve moved on.  I think part of grieving the loss of a loved one to CJD is leaving the experience behind.  But those of us who’ve been through it know it’s always there lurking deep inside.  

The horror of CJD came back to slap me in the face while I was busy living my life in May.  I had all but stopped thinking about it when my cousin called on May 5.  I truly thought I could walk the road alone and that the rest of my family wouldn’t have to suffer as I had through my mother’s death.  But when my cousin called and told me what was going on, it was clear to me that her dad, also in his mid-fifties, was also dying of CJD.  He died June 1.  

I know a few things now.  I live my life to the fullest and live it well, so I don’t question that.  I’ve also come pretty far in the last four years so I also don’t question whether I’ve properly grieved or moved on.  One thing I know for sure is that the Internet is here to connect us in ways we couldn’t on our own.  With social media taking off along with a popularity and credibility of blogs we didn’t have four years ago when this all began for me, the time is finally right for me to put this online.  

This is also exactly the time of year four years ago when my mother started getting some really scary symptoms.  It’s the end of September, another presidential election draws near, the weather is changing, and memories are coming back.  Flooding back.  It’s a hard time of year for me.  

But this will all be worthless unless I put it online for someone else to benefit from.  So that’s who I am.  I’m just trying to make a difference.  I’m going to share what happened to my mother from my four-year-old journals here.  I’ll be tweeting about CJD on Twitter.  I hope you’ll comment on this blog and join in my Twitter conversation.  I hope you’ll follow me as I share what I’ve been through and as I embark on my mission to help find a cure for this disease.  

Thank you.

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October 1, 2008 - Posted by | Uncategorized

2 Comments »

  1. Very touching Heather. My father too died on November 10 but in the year 1999 and he was 56 as well.
    You are right that it is always in the back of your mind. I will never forget and will always wonder if I will be stricken with CJD as well. But like you, I try not to dwell on it and live my life day to day. I almost lost my husband on Aug 23rd of this year to cardiac arrest and that experience drives home the point of living life to the fullest even harder.
    I will be following you as I have joined Twitter and bookmarked your other sites.
    Thanks for all you do. I wish I had your drive!

    Comment by Terri Howell | October 1, 2008

  2. Hello,
    My husband is 35 years old and he has recently received the DNA test for CJD. His result came back positive. A few weeks after we got my husband ‘s result, his father, who was very ill due to CJD, passed away.
    We do have a daughter. She is almost 2 years old. Now we know she may have the gene. We always wanted lots of children but now this became only a beautiful dream.
    We are completely lost. We cannot believe all this is happening to us. I can only cry when I think about our future. I hope I will be strong enough for my husband and daughter. I read your blog today and I could picture you as my daughter in 25 years from now. Although I believe we have similar ages, I am 32 years old! I hope she will be as brave as you!
    I am feeling old and tired but I laugh a lot every day… my little girl makes sure I do that! She is my life, she is my joy!
    Thank yu for your blog. It is an inspiration.

    Comment by Married with a gene carrier | October 25, 2008


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