Perspectives: On Caregiving

By Gregg Ratliff

Shortly after Nancy’s diagnosis of “Lou Gehrig’s Disease” I read on the ALSA website that “ALS is not just the patients disease, it is a family’s disease.” My care-giving perspective has allowed me to truly understand and validate this statement. Our family’s life changed dramatically over the seven years of Nancy’s illness. It strengthened some things, like our love, our resolve, our faith and our attitude control toward things we faced in life. I personally spend less time worrying and focusing on things I had no control over (which are most things in life). This provided me more time to focus on important and often overlooked things around me. My perspective changed tremendously. Joyce Meyer once said, “Your problem is not your problem. Your problem is your attitude toward your problem.”  Marcus Aurelius said it this way, “Our life is what our thoughts make it.” So, anytime I began feeling sorry for myself I simply looked at my wife lying in the bed and said … “Gregg, you have no right to feel sorry for yourself. Be strong for her and yourself!” When I thought Nancy might be facing difficult times I would play music for her, read the Bible to her, pray for her, massage her feet and hands with lotion and remind her how much I loved and admired her.

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Understanding Pseudobulbar Affect

Pseudobulbar affect, also known as PBA, is a condition that causes outbursts of sudden, uncontrolled laughter or crying that don’t match how a person feels or that is out of place in a given situation. Outbursts of laughter or crying can range in duration and severity and can occur up to several times a day. Other symptoms of PBA include inability to control laughing or crying, excessive laughing or crying when something is only mildly funny or sad and intrusion of thoughts that cause excessive laughing or crying.

PBA develops when damage is present in the area of the brain responsible for controlling what is considered to be normal expression of emotion. The damage can affect brain signaling system which causes involuntary crying or laughing. Damage occurs when there is a neurological condition or brain injury, making the condition common among people with ALS. For those with ALS and PBA, bouts of crying are more common than laughter. People with ALS can also have frontotemporal dementia (FTD), which is another condition common with diseases like ALS that cause neurological damage.

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Every August Until a Cure

LeBron James did it. Bill Gates did it. Oprah, Steven Spielberg and President George W. Bush did it. But the majority of people who took the ALS Ice Bucket Challenge in 2014 were not celebrities, just ordinary folks who got caught up in the fun of nominating friends and family on social media to be doused in water and ice for a good cause.  It’s safe to say, however, that there was definitely another reason why the Ice Bucket Challenge gained traction. ALS is a relentless disease that takes away a person’s ability to move, walk, talk, and breathe on their own and keeps them trapped in their body. To watch someone you know go through this is absolutely devastating, and knowing that there is no cure can sometimes make people feel both helpless and hopeless. For the thousands of individuals affected by ALS, this painful reality was fuel for action that inspired a community of people to come together four years ago to create the original ALS Ice Bucket Challenge.

What followed from this largest viral social media movement of all time was not just news feeds packed with ice bucket challenge videos, but real and meaningful impact for people with ALS – and for researchers searching for treatments and a cure.  The effects of the ALS Ice Bucket Challenge continue to be felt in the ALS community.

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The Kimmswick 5k: A Family Honors Their Mother’s Memory

By Jason Ratliff

The Kimmswick 5K is held in memory of Nancy Ratliff, who touched many people’s lives as a daycare teacher and director, Montessori school teacher, dedicated wife and profoundly loving mother, grandmother and friend.

Our family was turned upside down in the summer of 2009 when, at the age of 61, Nancy was diagnosed with ALS.

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Fighting in Memory of Grandma Ann

By Molly Cruitt

Earlier this summer, I got married at the church I grew up in, three days after my grandmother’s 78th birthday. My grandmother wasn’t there.

It’s been almost a full decade since my grandma lost her battle with ALS plus dementia, and it’s easy to get lost thinking of all the things she’s missed and the moments that will continue to happen without her present.

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Josh Rogers: Why I Walk to Defeat ALS

By Josh Rogers, Senior Vice President & Partner, FleishmanHillard

A few weekends ago, I was jogging past Steinberg Rink in Forest Park and I remembered the first Walk to Defeat ALS® that I attended. The Walk started and finished at Steinberg. That was 2005 or 2006, I think.  I participated in two Walks at Steinberg. Then the event shifted to the Forest Park Visitor’s Center. And this year, we’re moving again to the upper Muny parking lot.

Each location to date has served us very well as the event has grown. And I know our new spot will be great too. Forest Park is such a wonderful institution … it’s impossible to go wrong with an event in the park.

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After 25 years I’m Still Fighting Against ALS

By Maureen Barber Hill, President/CEO of The ALS Association St. Louis Regional Chapter

Although I think of my dad often, Father’s Day always brings with it a special pang of sadness.  It’s been 25 years now that I have not been able to spend Father’s Day with him  —  he lost his battle to ALS in September of 1992.  As the years pass I think I will always feel like a part of me will always ache – like I’m missing something, but more so someone, especially around those pivotal moments of my life and my children’s lives.  My kids never got the opportunity to know what a great man he was.  My daughter Meghan was only four years old and my son Michael was just seven days old when ALS took their grandfather from them.

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