Cure CJD

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

October 7th & 8th are weird days for me.

Yesterday and today, together, mark five years since one of the most pivotal days of my life.  October 7, 2004 is what I consider to be the last normal and innocent day of my life.  October 8, 2004 was the day I knew something was terribly wrong with my mother.  It is the day I remember her calling me at work sounding a little high strung wanting to know if I’d be able to take her to the doctor at noon.  In those days, I was working in the national news unit at work, so I left at 11am each day.  She knew this; there was no reason why I wouldn’t be able to take her to the doctor.  She had already lost her independence at that point as she was already afraid to drive.  Her white Ford Thunderbird sat untouched, yet still impeccable, in the garage.

When I took her to her doctor’s appointment, she didn’t have one.  She had mixed up the dates and her appointment was actually supposed to be at noon on another day.  Imagine how weird that was to a 25 year old daughter with a 56 year old mother… So I took her back home and I took a nap.

Then, a phone call from a doctor wondering if my mother was suicidal.


Apparently, while I was napping, she had called her neurologist’s office freaking out wondering why nobody could help her.  My mother already knew better than we did that something was terribly wrong with her.  She was in desperate survival mode, thinking if she rushed an MRI she may save her life.  She knew she was in danger more than we did.  I see that now, five years later.

To make a very long and traumatic story less long and deeply painful to recollect, she got her MRI that day.  I got the biggest scare of my life watching my mother unravel both physically and mentally before my eyes.  She could barely walk between her cerebellar ataxia and myoclonus.  She couldn’t communicate without telling the story of her day in circles, getting more and more angry each time she told it.  She was unable to end it, she just kept telling it, getting clearly more confused and agitated each time.  I wanted to take her to the emergency room.  She wouldn’t allow it.

When my father came home, we had a conference in the driveway.  I had to go to class that night; he would try to get her to an emergency room.  I didn’t think he could pull it off, but he did.  When I came home from school that night, he had gotten her to the hospital.

And she never came home again.

Today, I am working on moving to a smaller apartment in order to survive a furlough and pay decrease at work.  I am going through stuff in my closet and found my mother’s notes and drawings from when she had a hobby of tole painting.  It is so ironic to be going through her personal belongings today.  She wasn’t a big “stuff” person.  Her belongings were few.  But seeing her tole painting things reminds me of a once vibrant mother, a woman with goals and dreams.  She had hung onto that tole painting stuff since I was a baby, hoping to have time to return to her beloved painting hobby once again.  She didn’t, of course, having been robbed of her life at a young age by a genetic disease she didn’t know her family carried.

So what dreams sit on your shelf? What are you saving for later? What will your loved ones see unfinished when you die?

Think about it.  It will change the way you live your life today.


October 8, 2009 - Posted by | Uncategorized

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