ALS Connect

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.

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!

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:

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:

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.

Walk a Crooked Path: The Big Bad Wolf and the Three Bears

By Saundra Stewart

Not so long ago in a land not so far away lived a brave, strong man and his white-haired wife. They loved their little blue cottage on the hill. They loved playing with their grandchildren, going for long bicycle rides, and camping – especially camping!

One day, life was going along much as normal, when there came a knock on the door. When the brave, strong man went to answer, there on the porch stood a big, ugly, horrible wolf. On the front of his sweatshirt were the letters “ALS.” The man didn’t know what that meant, but he knew the creature was one of the ugliest things he had ever seen! Right behind the wolf were three bears. Big bears. Scary bears.

ALS Reflections from Outgoing Board Chair Dave Van de Riet

At the end of this month, Dave Van de Riet will complete his term as chair of The ALS Association St. Louis Regional Chapter’s Board of Directors. Over the past six and a half years, Dave’s leadership has been characterized by innovative ideas, strategic thinking and an overwhelming commitment to providing quality care to families facing an ALS diagnosis. His energy and passion for the mission will be difficult to match, but he leaves us a better organization and on strong footing for the future.

Dave will continue to serve people with ALS and their families locally in his role as the St. Louis Walk to Defeat ALS® Chair; as a member of the fund development, finance and executive committees; and in a national capacity as vice chair of The ALS Association’s Governance Committee and member of the Board of Representatives.

Thank you Dave, for your extraordinary leadership and tireless dedication to our mission and the people we serve.

In this post, Dave reflects on his tenure as Board Chair.

Back in July of 2012, I was honored to become the board chairman of the ALS Association St. Louis Regional Chapter. I had no idea what kind of journey it would be. Certainly, I had some idea of the responsibilities, the meetings and the commitment. I had the pleasure of serving as Vice Chair while watching past Chair Rick Palank ably lead the Board and along with our President/CEO – Maureen Barber Hill – establish a very strong foundation for the stability and success of the Chapter. What I didn’t know, however, was how much the job could change me.