25 August 2014

An ALS Story, In Memory of My Grandmother

In an effort to further raise awareness for ALS, I want to share the story of my grandmother, Penny Petersen, whose life was taken all too soon by this terrible disease. I wrote this with the help of my mom. Ever since the Ice Bucket Challenge began, it has been on our hearts to help people understand what this is all about. 


Along with the story, I'm sharing some of my favorite old photos of my grandma and some background on her life before ALS. Penny was born and raised in North Dakota. After graduating from high school, she joined the Marines and traveled to Hawaii as a recruiter. She met my grandpa, Walt, ice skating in San Francisco and they married months later at the Church of the Wayfarer in Carmel. They built a home together in Burlingame, just outside of San Francisco. There they raised two children, and later in life had five grandchildren.


In 1990, Penny started experiencing hoarseness in her throat and a raspy voice. At first the doctors diagnosed her with acid reflux, but after taking the prescribed medications, her symptoms did not improve. Eventually, the official diagnosis became ALS. There was no treatment and no cure. No more tests, no more prescriptions, no more doctor appointments. They said she could live up to thirteen years, but she said that they basically told her to “go home and die.” My grandpa took her to two different hospitals looking for better answers.

ALS is an aggressive and terrifying disease, essentially trapping a person in their own body, as they gradually lose control over all their muscles, slowly torturing them until they die.  For her, the disease skipped the earlier symptoms of paralysis of the limbs and went straight to her throat, followed by her chest and lungs, taking away her ability to speak, swallow, and eventually breathe. In a very short time, a woman who had always received compliments on her beauty would no longer be seen in public. She would spend more time in front of the mirror, trying to fix the appearance of her face which now sagged as if she had suffered a severe stroke. For a once healthy, active woman, ALS meant no more travel-- no cruises, no walks, no shopping. Her happiest adventure was when my grandpa could persuade her to let him drive through the local Wendy's so she could get a chocolate Frosty, which felt good on her throat. She attempted to communicate with her family using those magnetic drawing boards made for children, often becoming depressed and frustrated with her inability to express herself, especially to her young grandchildren.

Less than 4 months after her diagnosis, she was gone. The paralysis of her throat muscles made it extremely difficult to swallow, resulting in many choking episodes, one of which ended her life. At the time, my mom was 6 months pregnant with my brother and I wasn't yet two years old. My grandpa was robbed of the true love of his life. One of the worst parts was that ALS didn't just paralyze my grandma-- it paralyzed everyone who loved her, leaving them utterly helpless.

Lately, I've heard many people criticize the “ALS Ice Bucket Challenge,” whether for celebrating narcissism, wasting water, or for “getting old.” I just wanted to voice a reminder that for people whose lives have been affected by ALS, the Ice Bucket Challenge has been a miracle. It's forced everyone to talk about a disease that is almost never talked about. As of today, it's helped raise over $62 million dollars for ALS research! Every time I see someone dump a bucket over their head, I'm reminded that people really can make a difference. The Ice Bucket Challenge has demonstrated the power of generosity when all of us band together, united for one cause. What if this inspiring movement never loses momentum? 
Let's push toward a cure for ALS and then continue on to cure cancer, and on and on! 

Thanks for reading, and if you haven't already, please consider making a donation at www.alsa.org !

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