Great article today from Edinburgh: A mother loses her son to vCJD

There is nothing that I think is more important–and more difficult–about CJD to convey than what it is like to watch a person’s body endure the suffering caused by this disease.  This article does a really great job of showing how a young man went from healthy to helpless in mere months.  This is why the disease must be taken seriously and not be the butt of jokes on shows like “The Simpsons.”

Seeing this happen to a human body has given plenty of us long-lasting PTSD symptoms.  You can’t watch a person go through this range of neurological symptoms and not have your perspective on life forever changed.  I know, even five years after my mother’s death, that there are some things I’ve seen that I will never get out of my head.

This one portion of the article really stands out for me and talks about Kate Madden’s son, Alan:

“Later he’s pictured in a wheelchair and lying in a hospital bed with padded sides to stop him smacking his face against the metal frame as his body was wracked by uncontrollable jerks. He’s blind and he’s mute, he’s lost control of his bodily functions and he’s dying.”

Imagine losing control of your bladder and being unable to swallow.  Imagine experiencing non-stop jerky muscle movements and seizures.  Imagine being completely unable to walk or even hold a glass to your lips.  Imagine this happening to someone you love.  You mother, sister, husband, grandparent, or worse–your own child.

My heart goes out to the Madden family and all families affected by CJD.

It’s great to get a discussion going.

Take a look at all the comments at the Ecorazzi post about the “mad cow” episode of “The Simpsons.”

I’d love it if you would check it out and add your thoughts if you haven’t already.  Part of what moves this cause forward is YOU.  If we aren’t surfing the web and commenting as a community on the things that are important to those of us what have endured this, we’re really missing out.  I encourage everyone to comment on blogs, tweet about CJD on Twitter with the hashtag #curecjd, and put up their own websites about CJD.  Put up your a blog about your experience.  Share what you’ve learned with others.  Join the discussion.  Please.

This is part of the reason why I post to my blog more now instead of to the CJD Voice Yahoo group.  The group serves its purpose and you’ll definitely learn more there in a day than you will learn here at my blog.  However, I believe in making my thoughts about CJD public.  I think there is a power in putting it out in the world for all to see.

If we aren’t posting online about this disease, it may as well not exist. But it does, and it’s a horrific ordeal for anyone involved in it.  Get your message out there.  Don’t be afraid; be more afraid that it doesn’t get out there.

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.