Wednesday, November 4, 2009

Relief, Excitement, Research!

Many years ago, in a city far, far away a 4th grader found out her teacher had some disease that was unpronounceable, spellable yes, but could not be pronounced. The little 4th grader headed to the library to find books (all far too over her head) and then to doctors in the network of family friends to discuss.

The discussions were probably very high level as the 4th grader was smart, just not "that" smart. I'm pretty sure some things were left out as age appropriate. The aside from learning about leukemia, was learning to research.

For my biochem class that I've been allowed to rejoin, there is a research paper due. My inner geek exploded inside with joy, glee, sheer smiles! I LOVE to research topics - from medicine to pharmaceuticals to clinical trials to chemistry ... the pattern is becoming clearer.

In 35 years, I've moved a bit from cancer and leukemia research having long since realized there are other interesting diseases out there. My choice this time, is ALS.

Lou Gehrig's disease robs the individual of their motor function including swallowing and eventually, breathing. As the body declines, their minds do not. It is an insufferable disease that I saw first hand some 15 years ago in one of my family's very close friends.

My mother became the primary care-giver for a woman who had been her close friend in high school and throughout life. My mother is not a nurse, not a physician and the closest she has come to medicine is her own health. My mom, however, has a good heart... and gave it all for this woman to live as peaceably as she could.

My parents put a ramp through the front door of their house to make sure the lady's motorized wheelchair could get through. They had already built the house with wide enough door jambs to allow for their elderly years and the possibility that one of them might be bound.

As the woman's health declined, her mood did too. That is not unexpected as the mind stays fully alert which increases the potential for depression. Her professional care-givers would often not show up so my mom would be called and on one occasion, I was. I volunteered to go. This woman had known me all my life and had been amazing. It was my turn to give back.

Little did I know and yet, I knew I'd never regret that I went.

She needed to be turned about every 5 minutes. ALS robs the person of the ability of simple things like rolling over in bed, moving an arm, changing a leg position, even... moving the head. The eyes can still move, the mouth can still speak but nothing else works. Every 5 minutes for 10 hours, I would try to understand what she wanted as ALS started robbing her of speech as well. A head moved to the left, a pillow fluffed, a tear wiped... whatever she needed. Eventually, exhaustion took her that night for about 2 hours, I think. I too, was exhausted - emotionally as well as physically.

I stayed until the professionals showed up. I cooked her bran for her, carefully fed her, gave her sips of water, prayed with her for a peaceful passing. She was scared.

No, she was terrified. Not of death but of how that would come. Choking was now common in her life and sometimes, just catching her breath was a hard day's work.

Thankfully, her passing was painless and peaceful. She had suffered this disease for three years before it took her.

In honor of her, and my mom who took care of her until the end (and who's 78th birthday it is on Saturday), I'm doing my research on ALS. I am hoping to find some better news or at least hopeful news, compared to that which was dispensed in 1993.

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