Walk a Crooked Path: If You’re Going to Talk the Talk, Then Walk the Walk

By Saundra Stewart

Before Don became ill with ALS, he always taught an adult Sunday School class at the church we attended. I, on the other hand, always taught children. Don was such a good teacher, and the members of his class loved him dearly. One Sunday evening, we were just leaving for church when Don told me he wasn’t feeling well. We both played instruments for worship and it created a difficult situation if we weren’t there, but I called the Pastor and told him that Don wasn’t feeling well.  During the course of the evening, I became convinced that Don was having a heart attack, and I called 911. Sure enough, he had suffered a heart attack and would be in the hospital several days.

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Walk a Crooked Path: Help By the Bucketful

By Saundra Stewart

I am not a water lover – not in the slightest. I like to look at it, I like to drink it, and I like to take showers in it. But that’s about as far as my love for water goes. One time, when Don and I had taken a trip, we were relaxing in the motel pool. I accidentally stepped off into the deep end, and I seriously thought I was going to drown! All Don had to do was reach out his hand (we were actually that close together) and I was instantly rescued. My hero!

So, when I heard about something called “The Ice Bucket Challenge”, I wasn’t interested. Have I said that I don’t like water? Well, that goes double for ice cold water. Don, on the other hand was immediately up for the game. He was already wearing the c-pap most of the time, and breathing was a labor. But he wanted to help raise money. In fact, he was dead set on it!

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Craig Kramer: Why I Walk

It’s been over a year now since I’ve been diagnosed with ALS. Has my life changed? Absolutely! And a huge chunk of it has changed for the better!  But it isn’t only about me; it’s all about family and friends—and it turns out there are lots of them!! Here are some of the wonderful life-changing things that have happened since my diagnosis, and some of them likely wouldn’t have occurred:

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Walk a Crooked Path: Make It Easy on Yourself

By Saundra Stewart

ALS is unique in that no two cases start exactly the same, and no two cases end exactly the same.  Don made some decisions early on in his illness (no feeding tube and no vent) that affected the way I cared for him.  Your situation will be different, but let me share what worked for us.

There’s so much involved in caring for an ALS patient that I often thought there just weren’t enough hours in the day to do it all and do it well.  So, I used everything I could to make my life easier.  Don made it easy, because he wasn’t afraid to try new things, if I thought it was worthwhile.  I kept my eyes and ears open for new gadgets or methods of operation that would lighten my work load, but still get the job done effectively.  Here are some of the things I found:

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Care Services FAQ, Part 2

The care services team at the St. Louis Regional Chapter are the forefront of knowledge and information on ALS and what it looks like to live with the disease in our region. They answer questions from people with ALS and their families on a regular basis as they meet with families at clinics or during home visits. A few months ago, they answered some common questions they receive. Here is Part 2 of those FAQs.

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Walk a Crooked Path: Talk About the Hard Things

By Saundra Stewart

It seems that life runs in seasons.  Ephesians 3:1-8 (KJV) says it this way:

1 To every thing there is a season, and a time to every purpose under the heaven:
A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
A time to kill, and a time to heal; a time to break down, and a time to build up;
4 A time to weep, and a time to laugh; a time to mourn, and a time to dance;
A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
A time to get, and a time to lose; a time to keep, and a time to cast away;
A time to rend, and a time to sew; a time to keep silence, and a time to speak;
8 A time to love, and a time to hate; a time of war, and a time of peace.

We found these Bible verses to be very true in dealing with ALS.  If you pay attention, there’s a time for everything.  Sometimes you need to act quickly to take full advantage of the time offered to you.  That’s certainly the way it is when it comes to discussing the important things with your patient, be it a spouse, child, parent, or other loved one. 

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This is What ALS Looks Like

For the general public, ALS might bring some specific images to mind. Many might think of grainy black and white newsreel footage of Lou Gehrig standing in Yankee Stadium. Others might picture the same scene but replace the actual Gehrig with Gary Cooper from the movie Pride of the Yankees. Still others might picture—and hear—Stephen Hawking and his computer-generated voice. More recently, Steve Gleason has become what many think of when they think “this is what ALS looks like.”

But for those living with ALS and those caring for them, the disease isn’t embodied by a famous person, present or past. ALS looks like a kitchen reconfigured to allow for a power wheelchair at the table. It sounds like a ventilator or the hum of other medical devices. It feels like grips on silverware or textured plastic cups.

As we begin May and ALS Awareness Month, we want to explore what ALS looks, feels and sounds like for those with ALS and their families. As these families know, the progression of the disease means near constant change—some that can be planned for, and some that can’t.

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