The world today can seem like day after day of information
overload. And with good reason. Want to find a good place for dinner? Here are
45 positive reviews of that Italian place down the street, but what about those
15 negative ones? Here are 10 reasons eggs are bad for you, and 12 reasons you
should eat them every day. Which streaming service is best for you? Are you
saving enough for retirement?
And we haven’t even touched on making medical decisions. For
people with ALS, there are many well-regarded, well-informed medical
professionals to rely on for advice on traditional treatment options. But for
patients and families seeking information on alternative or “off label”
treatments, it can seem like they are on their own, left to fend for themselves
and to parse what is good information and what is spin. But that is not
entirely true. For those wanting and willing to learn more, there is ALSUntangled.
Continue reading ALSUntangled—Making Sense of Alternative ALS Treatments
By Saundra Stewart
I have a pet peeve. Okay, I have more than one, but I’m only going to mention one today! I am irritated to no end to walk into a public place and not be able to find a “family” restroom. I was grateful when our pastors built our new sanctuary that they thought it wise to include a family restroom in the plans. Why? If you’re caring for a person who is totally incapable of caring for him/herself, it’s often necessary to help them with their bathroom needs. It was such a relief to be able to take Don into the restroom and help him use the urinal or whatever else he needed to take care of. He certainly wasn’t comfortable going into the ladies’ restroom to potty, and I was equally uncomfortable going into the men’s bathroom to help him!
Don was a man’s man. He was so intent on jogging that he would jog to work, then jog back home after work was ended. He loved riding motorcycles (dirt bikes, especially), playing racquetball and softball, and getting out in the yard to play soccer or basketball with the grandkids. With all those manly hobbies, though, his favorite thing in the whole wide world was sitting down with a group of cronies and playing bluegrass on his five-string banjo. As ALS began to slowly take over his body, I saw those things he loved drop off, one by one. He began to fall (foot drop), so it became necessary to use a walker or scooter. No more soccer with the kids in the yard. He would sit and watch them play, but it just wasn’t the same.
Continue reading Walk a Crooked Path: Be Prepared!
The Dali Lama once remarked: “When you talk, you are only
repeating what you already know. But if you listen, you may learn something
new.” In that spirit, the national ALS Association undertook a community survey
in early 2019 to hear from the community about programs and services that
people consider important, reasons why people were not accessing some programs,
major challenges, and issues around medications. In listening to the community
about their realities, the ALS Association is better able to incorporate real
world information in to care services planning activities and to inform
priority setting, program outcomes, and program improvements.
Continue reading Listening to Learn—ALS Association Community Survey Results
By Saundra Stewart
If I had a dollar for every time I had been told to “take care of yourself”, I might be a rich woman! People were well-meaning. They wanted me to know that they thought of me and understood the weight I was carrying. But I almost laughed out loud! Just when was I supposed to do that? Was God going to allow me some extra hours in the day so I could go to the gym and work out or even sit down in a cozy chair and lose myself in a book for an hour or two? Rather doubtful. So I snickered inwardly, smiled, and sent them on their way.
Don and I had chosen (well, actually, he made the decision and I supported him in it) to not allow the feeding tube or ventilator. He knew what the ultimate end of ALS is, and he chose to fight it his way. I respected that. But it did make caring for him a bit more time consuming. We were blessed to have the Hoyer and the Gantry and multiple other gadgets and helps. It made life easier, but it took more time than I felt like I had some days. I had also trained myself to get up every hour and a half to two hours all night long and turn him, check on him and see if he needed anything. Let me tell you why . . .
Continue reading Walk a Crooked Path: Take Care of Yourself
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.
Continue reading Walk a Crooked Path: If You’re Going to Talk the Talk, Then Walk the Walk
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!
Continue reading Walk a Crooked Path: Help By the Bucketful
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