Cure CJD

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

I am really sick of CJD and Alzheimer’s.

I am very sick of these two diseases. They seem to be very similar, though each is traumatizing in their own way. Both of my biological grandmothers died of Alzheimer’s Disease (no CJD in either of their families). My mother, uncle, and great-uncle all have died of CJD. 

When my mother died in 2004, I knew there was a possibility the rest of us who were blood-related to her could suffer the same fate. I just wasn’t ready to see it happen again in my family just four years later. My uncle followed his sister a mere four years later when he died of CJD in 2008. 

Recently, a friend’s elderly mother passed after a long battler with Alzheimer’s Disease. It brought back some painful memories for me. I went to a meeting about organizing an Alzheimer’s fundraiser (more on that later) and proceeded to cry my eyes out in a room of complete strangers when I attempted to explain who I was and why I wanted to participate. 

But there is a sense of peace in doing all this stuff, in my trying to help the Alzheimer’s Association and UCSF. At least I am doing my share. I am doing what little I can. I have this little blog which seems to help others who are going through losing someone to CJD or who merely think their loved one could be dying of it. I think this is my place in the world and all I can do — at least for now. Sometimes I reach this point of peace and understanding from time to time. It may last for years or months. Or not. 

The other day, I found out a non-biological family member could have early onset Alzheimer’s Disease. Or something to that effect. No one really knows but it’s a theory right now. This floors me. This is not something I was ready to hear. I was not prepared that my non-biological family members (and friends) might go through this too.

People I love who aren’t even related to me can suffer and die from neurodegenerative diseases! What an awful realization. Hell, I wish I had stayed in denial.  I was prepared to lose biological relatives one by one. After all, this is the life I know. But I thought everyone else was safe, that maybe they’d all die of hearth attacks or traffic accidents or…who knows, really? 

Now it is beginning to feel like a holocaust. It’s beginning to feel like the plague of a generation. Will my generation lose the best years of our lives caring for our parents as their generation is obliterated by brain diseases? How can people my age take care of children and parents at the same time? When does this end? Where is our breakthrough? 

Will I do all this stuff and never make headway? Will it always be like this? I just don’t believe that is possible. I can’t. Or I won’t make it. Just some food for thought tonight. 

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January 11, 2013 - Posted by | Uncategorized

2 Comments »

  1. Hi Heather,
    My name is Rose Auld and like you (and many others who write you) have experienced CJD. My brother Bruce died of cjd in 1996 at the age of 41. And it is indeed a unique hell.

    I so wish I had answers and wisdoms to offer you. Your story is heart breaking and I’m so sorry. I will at least offer that you have certainly found some outlets for your enduring grief; that is no small feat in and of itself–give yourself that!

    Anyway, just finished watching the Baltimore Ravens beat the Patriots (I’m from Baltimore) and am in a quiet moment.

    You have my sincere thoughts Heather. Take care, Rose

    Comment by Rose Auld | January 21, 2013

  2. Rose, thanks for your kind words and for commenting on the blog! It’s always nice to see who is reading and great to hear your story. I am sorry to hear about your brother. I hope by finding the blog, you have been able to find an outlet for your grief as well. Each of us has a story and it is my hope we can all honor one another’s stories in unique ways, whether blogging or not. There are many of us and if you have found this blog and don’t have the courage to comment, please just know you are not alone!

    Heather Larson

    Comment by CureCJD_Heather Larson | January 26, 2013


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