Living with ALS: One Day at a Time

Hollister Lindley is striving to live the most purposeful life she can since being diagnosed with ALS.

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This is the beginning of a four-part series about Hollister Lindley, a 62-year-old resident of Richmond, Va., and how she is changing the way she lives after being diagnosed with a fatal condition, amyotrophic lateral sclerosis, also known as Lou Gehrig's disease.

Hollister Lindley and her husband, Rich Kern, in 2010.
Hollister Lindley and her husband, Rich Kern, in 2010.

Hollister Lindley is a formidable woman. Maybe it's because she is a 6-foot-tall redhead with strong opinions or that she comes from a privileged Hawaiian upbringing – President Barack Obama went to her school, she pronounces. Whatever the reason, weak is not a word that plays much of a role in her life or vocabulary.

Lindley has worked for half a dozen medical device companies and picked up extensive health care knowledge along the way. She also knows a lot about medicine: how pharmaceutical companies operate, how doctors really think and behave, and the nuances of the most sophisticated neurological and genetic research.

All of which is a good, if not fateful, thing because Hollister Lindley, 62, is slowly dying from amyotrophic lateral sclerosis, better known as Lou Gehrig's disease. There is no cure for ALS; it is a death sentence. Hollister's motor neurons are shutting down, taking away her ability to use her limbs, walk and potentially her ability to breathe.

[See: Living with ALS: A Life in Pictures.]

About 5,000 people in the United States are diagnosed with ALS each year, according to the National Institute of Neurological Disorders and Stroke. ALS is not a one-size-fits-all illness, as the disease attacks people differently. Researchers have identified possible causes such as gene mutations, chemical imbalances and abnormal immune system responses, according to the Mayo Clinic.

Hollister, a resident of Richmond, Va., says she has a slowly progressing form of the disease. During the time she has left – no one knows whether it will be one, three, five years or even longer – she has agreed to tell her story to U.S. News as it unfolds. She doesn't want sympathy or pity. She simply wants to explain why she clings strongly to some activities and easily waves goodbye to others. This is a story about what happens when some of life's doors are closing.

[Read: Want to Live a Long Time? Pay Attention.]

Hollister's journey may be atypical and compressed, but it shares similarities with the loss of independence many older Americans – including millions of baby boomers – will need to cope with as they navigate toward the end of their own paths. Hollister has adopted a clinical and detached position about her illness and future that often makes it seem like she's talking about someone else. But she isn't.

I was out visiting my cousins in California after my mother died. So that must have been the middle of late spring 2008, and I dropped my chopsticks. Now that doesn't sound unusual except that you know I grew up in Honolulu and could use chopsticks before I could use a fork.

What followed looked a lot like a commuter shuttle to the University of Virginia Health System in Charlottesville from her home in Richmond. It entailed a multi-year period of neurological tests and several surgeries to address what doctors at the time thought might be isolated nerve problems. Hollister got pins in her back, and then had them removed. She received a 16-inch incision in her arm as doctors looked to isolate and treat a dying nerve, and then she underwent a spinal fusion.

So they fuse my longer spine and, by joy, my toes moved. I'm standing on my heels. I'm standing on my toes. We fix this spondylolisthesis [when a vertebra moves from its position in the spine]. I'm a little sore because they pulled the L5 vertebrae about four-eighths of an inch, and ... I got a six-inch scar down the middle of my back. But all is well. I mean, the neurological report was remarkably good after that surgery. No doubt I'm happy to be done.

[See: States Where People Live the Longest.]

But, of course, Hollister wasn't done. Her right hand got progressively weaker, as did the overall condition of her skeletal musculature. Her doctors struggled to pinpoint the problem, and she recalls them "ticking off" possible diseases one by one. Meanwhile, she read everything she could get her hands on about neurological diseases, including ALS, and she saw where the lines might be converging.

In the fall of 2011, she went back to the University of Virginia for more tests, including an electromyography, or EMG, which can provide conclusive evidence to diagnose ALS.

The doctor finally came in and he sat down. I thought he was going to cry. And he said, "I was really hoping I was wrong, but I'm not. You've got motor neuron disease." I said, "Is it ALS?" He said, "Yeah."

.... I'm Scottish-Irish. We don't whine much. It's not allowed. My mother actually had a sign in her kitchen that said 'This is a no-whine zone.' Fix it, get over it and shut up about it. And so the only thing I could do was understand as much science as I can understand. It is what it is. We almost started dying the day we were born. You know what the difference is? I have a greater probability of knowing from what than you do.

Tomorrow: Living with ALS: Money Issues Need Care as Well