A new link found between CJD and Alzheimer’s

The evidence of a link between Alzheimer’s and CJD is definitely beginning to stack up.  I find it interesting because my mother’s mother has Alzheimer’s disease.  When my mother was still alive, she was fascinated with AD and felt strongly that it had to do with amyloid plaques on the brain.  She also thought it had to do with her mother’s fatty Polish diet… I’m not sure if that’s true, but that was her theory.  My mother died of CJD, which she inherited from her father’s side of the family.  I’m not sure what this means for me in the long-term, as both of my biological grandmothers suffered from a neurodegenerative disease.

Read the whole article from Washington University in St. Louis.  The new research is promising and helping to connect the dots.  Here’s an excerpt from the article:

“This interplay between amyloid and the prion protein raises questions about whether these diseases are really all that different, and whether there are common pathways involved in both conditions that can provide an avenue for new treatments,” says lead author Nupur Ghoshal, M.D., Ph.D., an investigator at Washington University’s Alzheimer’s Disease Research Center (ADRC).

Today marks five years since my mother’s death.

It feels like so much more than just five years have passed.  I think I look older than 30.  I definitely feel older than 30.  Yesterday, my mother would have turned 61.  It was a harder day than I thought it would be.  As each anniversary has passed, I have never been able to anticipate how I’d react.  Perhaps if I’d built something more than just a blog, I’d feel like a better activist, like I’d accomplished something in the face of CJD.  But in the first five years, that was not for me.  This experience five years ago was so bad for me that I’ve only begun to really heal.  When a second death followed in our family last year as my uncle passed, the second blow was dealt.  I never thought another family member would go so soon.  We truly are not blessed with time in this E200K family.

I realize how lucky we are that there is no doubt their deaths were genetic.  We don’t have to live with the guilt other families do thinking it was something they did environmentally or something they ate. We have my mother’s autopsy results; there are no mysteries.  But, on the other hand, we live with the genetic threat.  Having a time bomb ticking in our veins is probably worse than wondering if it was a meal we had in 1986 when the world was pretty ignorant to this…

Each day I wrestle with bizarre thoughts about getting tested, not getting tested, what triggered it in my mother, how I can prevent it in myself…which of us will go next.  I wonder why my mother’s father is still alive at this age.  I wonder why we were so ignorant when we were told his brother had died of “mad cow disease.”  I wonder what year it will be when we solve the prion disease puzzles that baffle us. I wonder if my generation will grow to be old before it hits us, like my grandfather’s generation.  Or will we be like my mother and uncle and go in our 50s?  Will we all be so lucky as to be negative for the marker?  I wonder if something I know or have witnessed in all this is some doctor’s answer to finding the cure.  I wonder if I should adopt instead of having biological children.  I wonder if it’s fair to die and leave children behind; at least I’m 30, so any time after this if I have kids, I would be leaving adult children behind.  These are the things I think about.  This is my life.

I’d be remiss if I didn’t say that there are days when I don’t think about it at all.

CJD is a lens through which I’ve seen life differently.  This has taught me many life lessons that I wanted to or was prepared to learn in my 20s.  I know I have a deeper, more intense focus on life than others do because of it.

So that’s five years.  This is where I’m at.  I’m taking some time to relax as this year ends since I’m off from Boston University right now.  It’s my first real break in a long time.  Usually I have two jobs plus school going at once.  It’s nice to be able to have school off my plate.  I have one final class in January before I graduate.  One of my promises to my mother as she lay dying was that I was going to finish my college degree.  In 2010, with my bachelor’s degree finally complete, I can focus on other things, like doing my part for the cause of curing CJD.  For now, I will just continue to blog and raise awareness.

The story of my mother, of our family, has touched one life at a time.  CJD doesn’t get nearly as much press as the sexier diseases like cancer.  People still associate it with b.s. like it’s an old person’s disease or that it is rare, or that it can’t happen to their family.  People think it’s still something only a few hundred people a year die from, so it’s not that important.  Well, if those 300+ people who died this year aren’t important to you, well, I can’t help what kind of person you are.  But that’s 1,500 people (at least) in the U.S. who have died, including my mother and uncle, since five years ago began on this day in 2004.

Those 1,500 lives lost matter to me.  They matter to us all.

RIP Phyllis Larson, November 9, 1948-November 10, 2004.

What a difference five years makes in the emotions of this

Yesterday, November 2, marked five years to the day I was told my mother wasn’t going to be coming home.  Her neurologist took us into the most remote corner of the floor where my dad and I sat next to each other as we were told she wouldn’t be coming home.  We were hysterical–or at least I was–so we left after that.  It was around 5 pm on election day, 2004.  We had meant to go back into her room to see her again before we left for the night, but since I was such a mess, we walked past her room in a rush, hoping she would never notice how upset we were.

I think she did though.  The nurse told us the next morning that she had had nightmares and hallucinations about snakes crawling on her legs.  (She had always feared snakes).  It was her last communication that made any sense to anyone.  She sank into herself after that night and never came back, save for horrific screams the night she arrived at hospice and a final laugh two days before she died.  She had laughed at her brother’s joke.  Now he is dead too, having passed on last year.  Yes, from the same disease.

I have always known that she saw us upset when it wasn’t our intention for her to see it.  She had seen us walk past her room in our horrible state that day.  And she knew.  I do believe she knew she was dying before we did.  But that day, she knew that we finally knew.  So she withdrew as only a CJD patient can.  It’s like they fall into quicksand, but the quicksand is their own body.

I am telling you this because I can.  Today, I can.  Thoughts of this on November 2 for the last four years have burned me from the inside out.  But at five years now, I can share it.  I was actually surprised yesterday at how little pain I felt.  I just remembered the day.  I was fully conscious of what day it was in my life and what it meant.  But I didn’t feel like crawling into a hole.  My life is still forever changed from the events of October and November of 2004.  You don’t get to go back.  You don’t even get to visit the way it was.  Once you get over this fact, the feeling of loss diminishes.

Some of us grieve again each time we try to bring our memories of our past back to life.  We remember, then we snap back to the present, which is all we really have.  For me, I was like that.  Once I let the past go–and that took some time–the weight lifted.  But I also delved directly into my pain and got through it.  I believe you suffer longer if you bury your pain or ignore it.

My mother is still here, alive in our memories.  But I no longer miss the past where she was alive.  Instead, I remember her fondly as though she were only on a vacation.  She’s still a part of this life of ours, always affecting my father, my stepmother, and I.

“Only love can leave such a mark.”  –U2

First “24,” Now “The Simpsons” Tackle Prion Disease

Another TV show is tackling the difficult and complicated matter of prion diseases.  This time it’s another Fox show, “The Simpsons,” however, the show does nothing to help my cause of educating people about CJD.  Instead, it does everything to reinforce stereotypes about “mad cow disease.”  Lisa Simpson is the only one who speaks the truth, calling it an “abomination” to feed cows to cows.

I found the clip on Ecorazzi, which does blog about the show with class.  Thank you, Ecorazzi for understanding that prion diseases are no laughing matter.

1. Vegetarians can, and have, contracted CJD.

2. CJD does not make every one of its victims “mad” or aggressive.  Usually when BSE affects a cow, it does alter the personality of the animal. A normally calm cow can become aggressive, but a normally aggressive cow can become calm.

3.  People do not get “mad cow disease.”  BSE is “mad cow disease” and affects cows.  If a person eats tainted meat and contracts a prion disease from it, it is called “vCJD.”

To be honest, I’m intrigued as to what’s going on at Fox.

That’s two shows now working CJD into their plots, even if not calling the disease by its proper name.  I also find it ironic that this ‘Simpsons’ episode shows cannibalism–when cannibalism in Papua New Guinea a couple hundred years ago is believed to have been the beginning of prion disease with Kuru.  There is another interesting moment where a brain comes out of a skull and gets covered with glasses and dentures, in effect personifying the brain.  (Relax, it’s a cartoon).  This also jumped out at me since CJD is a brain disease.  Seeing this reinforces what I’ve believed since “24″ saw Jack Bauer get CJD, that someone at Fox lost someone to CJD.

Who are you?

I see your grief working its way out through your art.  We need to talk–you can do so much for this cause that we share.