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 basics of “planned giving” are right there in the name:
It’s a form of charitable giving that’s planned. But the planning part, well,
sometimes it can be hard. After all, taking the time to sit down and think about
the future in any capacity–nonetheless charitable giving–often seems
intimidating. And once you begin to consider the types and forms of planned
gifts, you may find yourself even more lost than when you started.
But when you break down specific options, you might find the
world of planned giving becomes a bit less daunting and you may even be
surprised by the options that are out there. As such we wanted to explore in a
little detail the Charitable Gift Annuity, a form of giving that
has benefits for you and a non-profit of your choice.
Continue reading A Beneficial Way to Give—Charitable Gift Annuity Q&A
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
High school students often get a bad rap. Sometimes it is
deserved. High school, after all, can be a challenging time. And while figuring
out this period of growth and change, students can and do sometimes make at
best questionable decisions. We can all probably look back at our high school
years and think of one or two (or maybe more) cringe-worthy moments. It is all
part of growing up.
But it would be unfair to not acknowledge that high school
can and do have much to contribute to the greater good. In some cases, their
dedication and energy towards a cause is nothing less than awe-inspiring. We
have been witness to just such dedication and energy here in our local
community in the form of John Burroughs School and the “Extra Hands for ALS”
Continue reading Extra Hands for ALS—John Burroughs Students Honored for Lending a Hand to Make a Difference
First, the obvious: everyone wishes there were more
effective ALS treatments found already. Progress is being made, with five new genes discovered and
two new treatments in the last five years—we are closer than ever to the possibility
of a cure. But, even as we talk about how there have been real, tangible
discoveries in ALS research, we cannot yet point to a reliable treatment to
dramatically slow progression of the disease, let alone a treatment that stops
progression or acts as a cure. It is heartbreaking for people with ALS and
But for people with ALS, there is an active role they can
take in fighting the disease: by participating in a clinical trial. For while
the search new therapies begins in the laboratory, where ideas for new
treatments are tested in cell cultures or test tubes, if a treatment shows
enough promise it must eventually be tested on the intended end user, meaning
human beings—living, breathing people.
Continue reading A Clinical Trials Primer
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