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:Continue reading Craig Kramer: Why I Walk
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:Continue reading Walk a Crooked Path: Make It Easy on Yourself
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.Continue reading Care Services FAQ, Part 2
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:
2 A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted;
3 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;
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;
6 A time to get, and a time to lose; a time to keep, and a time to cast away;
7 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.Continue reading Walk a Crooked Path: Talk About the Hard Things
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.Continue reading This is What ALS Looks Like
Conversations about end-of-life care and advance care planning are difficult in the best of circumstances. For those with ALS and their families, these conversations present their own challenges, and the challenges of these conversation are often unique. It can be hard to think about planning for the future while the present has so many complications of its own. It can also be upsetting to think about declining abilities and the inevitable outcome of the disease. But having these important conversations about the future at a time and place that you decide can provide piece of mind for everyone involved.Continue reading Having the Conversations None of Us Want to Have
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.Continue reading Walk a Crooked Path: The Big Bad Wolf and the Three Bears