ALS CONNECT

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:

ALS Research—The Pace of Discover Is on the Rise

From the outside, research can seem like an endless process. As much as we all yearn for the “AH HA!” moment of discovery, more often than not the gains from any sort of research are incremental. Not so much finding a needle in a haystack as a slow, methodical, documented labeling of this piece of hay, then this piece, then this piece….As Thomas Edison said about the process of researching and creating the lightbulb: “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

ALS research has proven to be just such a challenge to the best minds in the medical and scientific communities. But recent advances are creating excitement about new ideas and opportunities, aided in no small part by the influx of funding created by the Ice Bucket Challenge. With all that is going on, we wanted to take a moment to look at what is happening in ALS research—to see what is new, what is promising, and what the future may hold.

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:

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.

Unlocking ALS—One Step at a Time

The Walk to Defeat ALS® is a colorful event. Team t-shirts from nearly every color of the rainbow dot the landscape, along with hats, shoes, signs. Color is everywhere.

But returning this year along the route, there will be an additional pop of color—a pop of color with a purpose. In 2018 The ALS Association launched Unlock ALS at Walk events to provide participants with a tangible way to recognize the real reasons they Walk to Defeat ALS. At the walks, participants select a lanyard in one of four colors to represent their connection to ALS. These colors represent:

Yellow: I have ALS
Blue: I Walk in Honor of Someone with ALS
White: I’ve Lost Someone to ALS
Red: I Support the Cause and Want to Defeat ALS

You Are Part of Finding a Cure for ALS—By Being an Advocate

The role we can play as individuals in finding new treatments—and a cure—for ALS can seem small. Most of us aren’t world class medical researchers. Most of us don’t have hundreds of thousands of dollars to donate to funding those doing that research. Our role in fighting ALS seems minor by comparison, but it isn’t. By adding our voices to the chorus of voices advocating for people with ALS we can—and do—play an important part of the fight for a cure.

As we continue with ALS Awareness Month, we wanted to look at ALS advocacy and explore what is being done, what can be accomplished, and what you can do.

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:
²A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
³A time to kill, and a time to heal; a time to break down, and a time to build up;
⁴A time to weep, and a time to laugh; a time to mourn, and a time to dance;
⁵ A time to cast away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;
⁶A time to get, and a time to lose; a time to keep, and a time to cast away;
⁷A time to rend, and a time to sew; a time to keep silence, and a time to speak;
⁸A 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.