A SUPER-powered WP Engine Atlas Test Site

Joe&#039;s Atlas Experimentation Site

I make lists to keep track of everything I need to do in addition to taking care of my husband, Todd, who has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. Make an appointment to have the <a href="https://alsnewstoday.com/columns/facing-winter-together-fighting-best-we-can/">snowblower</a> removed from the tractor and the bucket put on. Get the snow tires swapped out for summer tires on our vehicles. Order pants and track shoes for my growing teenage boy. Attend <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">my kids’</a> band and choir concerts, track meets, and dance shows.
As we approach the end of the school year, a lot is going on, especially because my daughter is a senior in high school. We ordered her graduation announcements and figured out a menu for her party. I make sure she’s on track with her college plans. Has she submitted her scholarship essays on time? Did the university receive her AP English Language and Composition test results? When will her federal financial aid application be processed? When will dormitory housing be open for incoming freshmen to pick their rooms?
My daughter will also attend her senior <a href="https://alsnewstoday.com/columns/als-diagnosis-prom-special-strands-pearls/">prom</a> in a couple of weeks.
We ordered a prom dress months ago. The first one was too big, so we returned it. We ordered a second dress with sequins, which fits her perfectly, aside from being too long. “Get dress hemmed” was added to my list.
[recommended-reading id=90466]
I texted a seamstress I knew to see if she could alter it. She could, so I sent another text thanking her and saying we’d need it a few days before May 11.
Last week, when I sent another text to schedule a time for a fitting, I learned there had been a communication glitch. The seamstress hadn&#8217;t received my second text message and had since been completely booked.
I felt like crying. I often feel on edge due to the stress of <a href="https://alsnewstoday.com/living-with-als-2/">living with my husband’s ALS</a>. I cry easily, even about minor things.
But in this case, I fought back the tears and told myself, “This is not a big problem.”
I thought back to the previous evening when Todd’s lungs had filled with mucus again and again, and I&#8217;d cleared them over and over. After I got him breathing again, I went to take my evening sauna, and my mother arrived to give Todd his nightly massage and range of motion exercises.
A while later, my mother pounded on the bathroom door and yelled for me to come help.
“What is it?” I asked her.
“I don’t know,” she said, the sound of panic in her voice.
In his office, reclined back in his power wheelchair, Todd wasn’t able to talk. It looked like he was drowning in his own phlegm. I cleared his lungs.
“You saved my life, again,” Todd said wryly, as I walked away to blow-dry my hair. And then he said to my mother, “Look at her. She didn’t even have a <a href="https://alsnewstoday.com/columns/how-does-caregiver-stress-husbands-als-affect-me/">stress response</a>.”
Todd is dependent on me to stay alive. Not being able to breathe or cough is a big problem. ALS is a big problem. Most other problems in life pale in comparison.
Getting a prom dress altered is small stuff. I took a deep breath. I’d find a solution.
<h3>Time for problem-solving</h3>
In our 14 years of living with ALS, I’ve found equipment and resources for my husband. I’ve recruited nighttime caregivers for him. I’ve researched medical issues and <a href="https://alsnewstoday.com/columns/benefits-physical-therapy-als/">navigated our healthcare system</a>. I’m a problem-solver.
Before long, I realized that I could hem my daughter&#8217;s dress.
I haven’t done much sewing, but I’ve learned how to do many things for my husband’s care for which I felt ill-prepared. Without any medical training, I’ve saved Todd’s life with manual assist coughs on a near-weekly basis. I’m not mechanically inclined, but I’ve learned to blow snow, clear brush, and landscape using various attachments on the front of a tractor.
I used Google to search “how to hem a sequin dress,” and I found a YouTube video with several pointers. I’d have to purchase a strong pair of scissors to cut the sequined material, but it seemed doable. And I’d save a little money compared with the cost of hiring somebody to do it.
I added “hem dress” to my to-do list.
Hemming the dress is a fun little project — a nice distraction from the daily grind of caregiving. I’m halfway done with the top layer and it’s turning out well.
After all these years of living with ALS, I’ve found that it&#8217;s often the small things in life that bring meaning and joy.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

The small things bring meaning and joy in life with ALS

A decade ago, I purchased a fireproof lockbox to secure important papers, such as birth certificates, Social Security cards, and passports. I also stored several necklaces that my husband, Todd, had given to me, along with two watches he&#8217;d worn before he got <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Over the years, I added other random documents to the box, such as vaccination records and even a few love letters Todd had written to me.
Retrieving a document from the box earlier this week, I noticed a foul odor. I flipped through the items and found Todd’s old watch bands covered with a dusty brown powder. Mold had infested our passports and the boxes holding my pearl necklaces, and everything in the box had a musty smell. With sadness and frustration, I sorted through the documents and memorabilia that I&#8217;d preserved for the future.
[recommended-reading id=78210]
The love letters had black splotches on them. I don’t know why these four letters ended up in the fireproof box. I scanned them and printed new copies and added them to a decorative cardboard box where I keep others letters from Todd, including those from the first year of our marriage, when he wrote a letter to me every month.
I scanned other documents and put the originals in a box to burn.
I cut off the watch bands and cleaned the timepieces. When Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, <a href="https://alsnewstoday.com/columns/preparing-children-deal-grief-diagnosis-parenting/">our son</a> was only 9 months old, and Todd wanted me to give the watches to him when he got older. We didn’t think Todd would survive to see our son approach 6 feet tall and 15 years old, but he ended up with something more valuable than a watch: time to know his father. In all that time, he&#8217;s never seen his father wear a watch, and he’ll probably never wear one himself since we’re in the digital age with mobile phones always within an arm’s reach.
I threw out the boxes for my pearls and washed the strands. Since my 33rd birthday was within a couple months of Todd’s ALS diagnosis, he was still reeling when <a href="https://alsnewstoday.com/columns/als-diagnosis-prom-special-strands-pearls/">he gifted me a pearl necklace</a>, forgetting that he had given me the same gift of a premier brand years earlier. I didn’t let on at the time that I already had a pearl necklace until years later, when our daughter needed something to complement her prom dress. I offered her the beautiful but less expensive strand, and Todd was completely surprised by his repeat gift. He only could remember giving me the first strand.
“I can’t believe I did that,” Todd laughed at the time. “I was in a fog for months after my diagnosis.”
For some documents, I need the originals, so I attempted to salvage them. I set those papers under rocks on my patio table in the sunlight to air out. I dipped our Social Security cards in a diluted bleach bath.
I flipped through our expired passports with feelings of <a href="https://alsnewstoday.com/columns/sadness-joy-paradox/">sweet sadness</a>. It&#8217;s fun to see the stamps of the places I’ve been, like Mexico, Guatemala, Taiwan, and France — the last two trips with Todd before he got ALS. Todd had a few more stamps in his passport, because he traveled internationally for work. His last trip was to Argentina, a year after he was diagnosed, which was difficult on him physically.
I wanted to salvage my passport, as it would be easier to renew it if I could submit the old one.
“Should I bleach your passport?” I asked Todd.
“I’ll never travel again,” he said. He is paralyzed, and his neck is so weak that he doesn’t even like to leave our home.
I cleaned my passport. I added his passport to the box to burn. I tasked my son to burn it all in our outdoor chiminea.
Watching it all go up in smoke, I asked Todd if he felt sadness letting go of his old passport.
“Not really,” he said.
I asked him why he thought that was, as I was feeling sad about it.
“You imagine the future when your passport will be useful, either to get a new one or to flip through the old one,” he said. “But my hands don’t work for anything material to have value, and I have no future use for it.”
We all have to let go of material things eventually, but ALS speeds the realization of the fragility of life.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Letting go of material things as ALS progresses

My husband, Todd, woke to double vision after a week of severe headaches. He was discouraged because his vision was one thing he had left after 14 years of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> taking most of his muscles. I scheduled an appointment for him to see an ophthalmologist on Monday of last week, the soonest he could get in.
I was concerned that Todd was entering a new phase in his ALS decline. I&#8217;d heard that although people with ALS usually retain their ability to move their eyes, on rare occasion they lose that ability, too. I searched online and found <a href="https://iovs.arvojournals.org/article.aspx?articleid=2149238">a study</a> that showed a possible link to vision issues for people with ALS.
After a thorough eye exam, the ophthalmologist diagnosed Todd with <a href="https://my.clevelandclinic.org/health/diseases/sixth-nerve-palsy">sixth nerve palsy</a>. A muscle in his left eye isn&#8217;t fully functioning; he sees one image when he looks to the right, but as his eyes move to the center or left, he sees double. It gave him peace of mind to know what was happening.
But we&#8217;re still left with the question of why it happened.
[recommended-reading id=90697]
<h3>Managing a second disability</h3>
I asked the doctor if sixth nerve palsy could be related to ALS. I read her the abstract of the study I&#8217;d found, but she said that it was referencing a different nerve than the one in question with Todd.
Todd didn&#8217;t think his eye issues were because of ALS, anyhow, because with every other muscle that had weakened, he&#8217;d first noticed it when he was fatigued; after resting, it&#8217;d be stronger. In this case, though, he’d wake with double vision after resting all night.
The ophthalmologist said his sixth nerve palsy could be idiopathic (of no known cause), but she wanted Todd to go straight to the emergency room to have possible underlying issues evaluated. It&#8217;d be the quickest way of getting bloodwork results back, and if Todd were having an inflammatory response, for example, she could prescribe corticosteroids.
At the hospital, Todd’s bloodwork came back fine; he wasn&#8217;t having an inflammatory response. The ER doctor then recommended a CT scan to look for other possible causes, such as a blood clot, aneurysm, or tumor. We discussed various courses of action depending on what the scan found. She then asked Todd if he had a medical directive.
He does and said, “I would do something noninvasive, like steroids or blood thinners, but at this point I wouldn’t have surgery or chemotherapy.” He thus agreed to the CT scan because it could show vascular issues, such as a blood clot that could be treated with blood thinners.
After the scan came back fine, though, the doctor recommended an MRI for a better look. Todd declined that. It had turned into a long day with a lot of waiting, and Todd was exhausted and wanted to head home.
The doctor explained that double vision from sixth nerve palsy often clears up within a few months, assuming there’s no trauma or serious underlying condition, so we&#8217;re hopeful that that&#8217;ll be the case for Todd. It’s a welcome change to have <a href="https://alsnewstoday.com/columns/finding-hope-alongside-ski-trail/">hope</a> for improvement while living with a disease where there&#8217;s only <a href="https://alsnewstoday.com/columns/learning-new-limits-ongoing-decline/">ongoing decline</a>.
Todd slept better Tuesday night, his headache disappeared by Wednesday, and by Thursday his double vision started to improve. But he has a long way to go.
We&#8217;re patching one eye so he can see clearly with the other. That works OK while he’s at his computer, but it makes driving his <a href="https://alsnewstoday.com/columns/as-we-try-out-new-wheelchair-technology-i-have-much-learn/">wheelchair</a> difficult. He has poor depth perception when using only one eye, and he&#8217;s clipped door frames and scuffed walls. I hope that&#8217;s short-lived and he doesn’t have to navigate this other disability for long.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

My husband is now navigating sixth nerve palsy on top of ALS

Last week, my kids and I drove from Michigan&#8217;s Upper Peninsula to the Milwaukee area for spring break. I have many fond memories of living there with my husband, Todd, more than a decade ago, before he got <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. It’s too difficult for him to travel now due to significant progression of the disease, but we still wanted our children to have a spring break trip, and I needed a <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">break from caregiving</a>.
Finding caregivers is always a challenge, but I managed to line up people to care for Todd for five days. My mom was available to help, and Todd’s sister came over from Minnesota, but he didn’t want either of them to assist with personal care. They made meals and fed him, adjusted his arms, and scratched itches, but I found others to help Todd in the bathroom.
Todd’s nighttime caregivers stayed late, and I had daytime caregivers arrive in the mornings, get him washed up, use the overhead lift to get him out of bed, and stay until after he sat on the toilet. A nurse friend volunteered to stop by later in the afternoons to help him in the bathroom for five minutes, and we paid another caregiver to stop by in the evenings.
[recommended-reading id=86101]
<h3>Should we stay or go?</h3>
Trip planning always feels tentative. If Todd or any one of the caregivers had gotten sick, I would&#8217;ve had to cancel. I <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">prepared our kids</a> for that possibility, but by the morning of our planned departure, the trip was still on — though I felt uneasy about leaving because Todd had a headache for a week and then developed <a href="https://www.yalemedicine.org/conditions/double-vision">double vision</a>.
Todd’s <a href="https://alsnewstoday.com/columns/benefits-physical-therapy-als/">physical therapist</a> had been off the previous week, and we hoped Todd would feel better when the therapist was able to come again to work on Todd&#8217;s neck. I suggested a telehealth appointment with Todd’s primary care doctor, but Todd declined. He wanted to give it time. There was nothing I could do for my husband that his sister and my mom couldn’t handle, so the kids and I embarked on our six-hour drive south.
While en route, I asked my mom to make an appointment with Todd’s optometrist, but they couldn’t get him in for several weeks. I called my optometrist, but she was booking three months out. She put him on her waitlist but suggested that Todd see an ophthalmologist. I left a message for the only ophthalmologist in town. The next morning I received a call from the office.
“It usually takes months to get an appointment,” the scheduler said, “but we just had a cancellation. We can get him in next Monday.”
“We’ll take it,” I said, and then I texted Todd. After a couple more days of double vision, he was ready for a medical examination. My mom and his sister had been putting patches over one of his eyes, but he was getting frustrated.
<h3>Medicine for my soul</h3>
The kids and I had a packed schedule of big-city activities. We raced go-carts, hit balls at Luxe Golf Bays, and jumped around at a trampoline park. We walked through the indoor gardens of the Mitchell Park Domes Horticulture Conservatory, went shopping, ate at restaurants, and attended ComedySportz, an interactive improv comedy experience. We drove down to Chicago for a day, where we walked the Magnificent Mile and went up 94 floors to the 360 Chicago Observation Deck for a spectacular view of the city.
For much of the trip I was able to compartmentalize my life and not think too much about ALS, but I got teary-eyed when old friends asked how Todd was doing. I told them about the latest development with his eyes.
“He’s discouraged,” I said. “His vision was one thing he had left.”
I kept checking in with Todd through text. “Any updates on your health?” I asked.
“Still have ALS; double vision,” he replied.
On the trip, I had <a href="https://alsnewstoday.com/columns/bittersweet-family-life-games/">bittersweet moments</a> when we visited some of the places Todd and I used to go. I have fond memories of happy times, but I’m also reminded of what we lost — what we would&#8217;ve had if Todd hadn&#8217;t gotten ALS. But conversations with old friends and the time away from the tedium of daily caregiving was medicine for my soul.
We packed so much activity into five days that by the time we headed for home, I was ready to leave the busyness and traffic of the city and return to my quiet, homebound life in the country.
It was good to see Todd again. I can’t miss him when I’m always with him. And Todd was happy that his sister catered to his tastes, preparing meals that no one else in our family likes, such as sausage gravy over biscuits.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Time away from caregiving for my husband was restorative

I recently connected with another spousal caregiver who wondered how I felt about life now that my husband, Todd, has had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for nearly 14 years.
She&#8217;s just a few years into <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, and her husband uses a power wheelchair and speech-generation technology and receives ventilation through a tracheostomy. They&#8217;re still active and embracing life, and her stories of her husband writing a book and speaking in public brought back memories of our earlier years with the disease.
We had many relatively good years, even after Todd was paralyzed and in a power chair, and particularly before he needed <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>. I think back fondly to winters when our family went to <a href="https://alsnewstoday.com/columns/living-life-precautions-virus-exposure-coronavirus-compromised-immune-system/">Michigan Tech hockey games</a> and to summers when we&#8217;d go to various beaches on Lake Superior.
[recommended-reading id=90512]
Todd used to go to Applebee’s with a group of guys on Thursday nights, and our family would attend church Sunday mornings. Todd started and led a Second Saturday breakfast for men of the church, and he also became a lay preacher, speaking at our church every few months and occasionally at other churches.
While I was home taking care of Todd and our two kids, Todd and I wrote and published <a href="https://nevastory.com/heavy/">our memoir</a>. Then I wrote three <a href="https://nevastory.com/copper-island-novels/">fiction novels</a>. I got excited whenever my mom would take our children for Grandma time and we’d have uninterrupted time to work on the books.
Todd helped me rework scenes and edited the novels. He taught himself Adobe InDesign, typeset the books, and created the covers. We recorded our reading of the memoir for Audible, and we had fun creating content for our YouTube channel, <a href="https://www.youtube.com/c/ALS411">ALS411: Tips and Tricks for Disabled Living</a>. Our collaboration brought energy and excitement to our marriage.
We went on a few family vacations that were a day’s drive away. Todd’s favorite family memory is the last <a href="https://nevastory.com/roughing-it/">such vacation we took</a> in 2019, nine years after his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. We drove to visit the <a href="https://new.smm.org/" rel="nofollow">Science Museum of Minnesota</a> in St. Paul. He was able to roll around and look at the exhibits, and we watched a movie in an Imax theater.
We had a good time, but the trip was physically hard on him, and we knew it was our last vacation.
<h3>A new stage</h3>
Now Todd’s ALS has progressed so far that he’s too uncomfortable to leave our home at all. He no longer goes to Applebee’s, and he hasn’t been to church in a few years. No family vacations. No hockey games. No beach days.
Todd requires breathing support and gets winded if he talks too much. He&#8217;s so beaten down by the disease that he doesn’t even want to get out. And since he&#8217;s dependent on me for his care, I can&#8217;t go far, either.
At this stage, the disease is much harder for us to deal with emotionally. We still find little joys in life, but we aren’t active like we used to be.
ALS progresses so differently for people. For some, life with ALS is a sprint, and for others it&#8217;s a marathon. We&#8217;re in our 25th mile, and we are tired.
But our weariness isn&#8217;t entirely about this stage of disease progression. Todd has more function than my friend’s husband, for example. Todd can still speak, he only needs noninvasive ventilation, and he can move his neck as long as he’s properly positioned in his chair and parked on a flat surface.
Our state might be a matter of how long we’ve been dealing with disability, or it might be our personality and general disposition. Some people struggle to stay positive even during the early stages when they have independence. Others, like Todd, maintain their drive and passion for life even with severe disabilities. Todd remains fairly happy as long as he has projects to work on.
But he’s lost his drive. The main thing that keeps him going is his desire to see his kids grow up.
I&#8217;d encourage anyone who&#8217;s new to the disease to do as much as they can while they can do it, because life only gets harder — physically, for sure, but also mentally.
It was good for me to remember that we had a good run of at least 10 years of a pretty active life even after Todd’s ALS diagnosis. And my friend, the other caregiving spouse, was encouraged by how long we were able to be active.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Remembering our active life in the early years of ALS

I recently came across <a href="https://www.cnn.com/2024/03/02/opinions/disability-snl-gillis-chappelle-comedy-smith">a CNN opinion piece</a> by writer s.e. smith titled “Jokes about disability aren’t taboo. But here’s who shouldn’t be telling them.” I read on, because my husband and I <a href="https://alsnewstoday.com/columns/weve-developed-dark-sense-humor-living-with-als/">often use humor</a> to deal with the difficulty of <a href="https://alsnewstoday.com/living-with-als-2/">life with ALS</a>, as Todd is paralyzed and I am his full-time caregiver.
Smith quotes Dave Chappelle from his stand-up comedy special “<a href="https://www.netflix.com/cr-en/title/81665820" rel="nofollow">The Dreamer</a>,” on Netflix: “There’s probably a handicap in the back right now ’cause that’s where they make them sit.” And then smith says, “It was a line the audience was apparently supposed to find funny, relying on an outdated and offensive term for disability and a crack about where many people think disabled people belong: Out of sight and out of mind.”
I told Todd about the column and Chapelle’s line. He laughed out loud and thought smith was missing the point. “Chapelle wasn’t expressing his attitude toward people with disabilities, but rather that public spaces are often not that accommodating.” Even in the newer public venues, <a href="https://alsnewstoday.com/columns/outings-family-wheelchair/">accessible seating</a> is typically in the back.
[recommended-reading id=89477]
Todd pointed out that humor is often used to highlight the absurdity of life, which is true, but what grabbed my attention was smith’s perspective that “handicap” is an outdated and offensive term for “disability.” But who decides what language is offensive?
Todd and I came across this controversy five years ago after we posted <a href="https://www.youtube.com/watch?v=AsiD_rX5iXw">a video about accessible vans</a> on our YouTube channel, &#8220;ALS411 – Tips and Tricks for Disabled Living.&#8221;
In the video, I twice reference Todd’s “handicapped-accessible van,” and I talk about “handicapped parking.” At the time, I had no idea there was any controversy around the word. We were just trying to share information that might be helpful to the <a href="https://alsnewstoday.com/forums">ALS community</a>, but someone commented, “We are disabled not handicapped.”
Todd replied, “Interesting that you prefer ‘disabled.’ Neither term has bothered me in the slightest, but if pressed I would say handicapped is a more accurate description. Handicapped implies limited skills — coming from the words &#8220;handy&#8221; (meaning clever or skilled) and &#8220;capped&#8221; (meaning limited). Disabled means the opposite of able, or not able. When we use the word disabled to talk about a thing, we generally mean that it doesn’t work at all. I still have a lot of abilities, but they are certainly limited. So I guess I would prefer the word ‘handicapped.’”
Someone else jumped in with the observation that in the U.K., the term handicapped is archaic and is regarded as somewhat offensive, though they recognized that it was still an acceptable word in other places and didn’t have a problem with it as long as people are well-meaning.
Another person referred to himself as handicapped in his comment sharing the value he found in his rear-entry van.
Our community has a variety of opinions about this issue.
<h3>An etymology</h3>
Ronald Amundson, professor emeritus of philosophy at the University of Hawaiʻi at Hilo, posted an article titled “<a href="https://hilo.hawaii.edu/~ronald/HandicapDefinition.htm">About the Meaning of ‘Handicap</a>.’” In it, he traces the etymology of the word and dispels the myth that it originated from people begging for money with “cap in hand.” As far as he knows, the first use of the word was in 1653, referring to a trading game in which money was put into a cap.
In 1750, the word began to apply to horse races. This broadened to other competitions and is still used today, such as in golf, when a handicap is a benefit given to inferior players. The first use of handicap to designate a mental or physical impairment was in 1915.
“Many people dislike the term because of its association with old-fashioned attitudes towards impairments,&#8221; Amundson writes. &#8220;That’s a perfectly good reason to avoid the term.”
Language changes with time, and the reasons are not always clear. The <a href="https://www.ada.gov/law-and-regs/ada/">Americans with Disabilities Act of 1990</a> may have influenced the preference for the word “disability,” and most states have since eliminated the term “handicapped” in reference to reserved parking spaces and people with disabilities. I don’t know why some people think “disabled” is a better term than “handicap,” but I don’t want my words to be a barrier to people understanding my point.
We didn’t parse the nuance of the word “disabled” when we named our YouTube channel, but I now try to pair it with the word “with” — Todd is a person “with disabilities.” Since posting that video, I’ve avoided using the term “handicap” or even “handicapped-accessible.” Instead, I just use the word “accessible” when referring to seating, vehicles, or parking spaces. And when talking about Todd’s condition, I try to be specific, referring to him as having <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and being paralyzed.
In any case, we should have grace for those with disabilities and all who advocate for them.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Finding the best language to talk about disability

“I’ve noticed a decline in my <a href="https://alsnewstoday.com/als-mental-health/">mental health</a> this week,” my husband, Todd, observed after a week of being quarantined in his office. Our daughter had a bad cold, and Todd hoped to avoid the bug that would have threatened his life. He rarely leaves our home, anyhow, but he missed being able to roll down to the dining room for his meals and engage in family banter.
His world got even smaller.
Todd has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, and his lung function is so low that he needs <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">noninvasive ventilation</a>. His neck is too weak for him to comfortably ride in his van, and he feels self-conscious wearing his ventilator in public.
As Todd’s caregiver, my world has also shrunk. For me, the day-to-day sameness of life is one of the most difficult parts of this stage of the disease — apart from when I’m in <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">crisis mode</a> trying to clear his lungs so he can breathe.
Gone are the days of <a href="https://alsnewstoday.com/columns/husbands-als-progression-takes-us-different-season-life/">heading out in his wheelchair-accessible van</a> together to see one of our kids perform in a band or choir concert, or going on a <a href="https://alsnewstoday.com/columns/living-life-precautions-virus-exposure-coronavirus-compromised-immune-system/">family outing to watch Michigan Tech hockey</a>. Gone are the days of driving to a nearby larger city for vacation. Gone are the days of meeting friends for dinner at a restaurant.
[recommended-reading id=90226]
Todd doesn’t grieve the loss of these activities so much anymore. He says the hardest losses were the ones that came on suddenly, like when he first realized he couldn’t get off the ground or squeeze a mustard bottle. But his health has been compromised for so long that he has no desire to go anywhere, and the increased difficulty of leaving the house was so gradual that he didn’t feel a sudden loss. But he can normally motor around the house, and so being relegated to the back of the house is stifling.
I can understand how he feels, in a way, because when I’m sick with a bad cold or the flu, all I want to do is sleep. I’m not thinking so much about what I’m missing out on because I first want to feel better. But I pay a mental toll when I can’t do things I&#8217;d like to do because of our circumstances.
Just a little change of scenery from one end of the house to the other is enough to put Todd in a better mood.
<h3>The joy of seeing new things</h3>
I was struck by how my mood improved with an unusual change of scenery last Saturday. To close out the season, our local ski hill set up a slush pit filled with water, and skiers and snowboarders attempted to skip across it to the other side.
Our teenage son had wanted to go, and the timing ended up working out with Todd’s care so that I could watch him try to ride across it on his snowboard. I stood with other spectators at the bottom of the hill and chatted with another mom who has a son close in age. We watched several skiers and snowboarders attempt and fail.
“I have never seen anything like this,” I said as I watched in disbelief.
It was 36 F out — not bad for a March day in Michigan’s Upper Peninsula, but still much too cold to get wet. Sure, my daughter and I partook in a polar plunge in January, but they had several saunas heated and available for participants to warm up. But these skiers and snowboarders were hardcore.
Some made it across, but many sunk into the water partway across. Coast Guard members decked out in waterproof gear waded into the pool to help some of them out. One snowboarder made it across, managing a 180-degree turn in the process and spraying water on the spectators. Some of the participants were dressed in costumes: a hot dog, a chicken, and a hunter in blaze orange. One couple failed spectacularly strapped onto one set of skis with double bindings while holding kayak paddles; they didn’t make it more than 6 feet.
<figure id="attachment_90422" aria-describedby="caption-attachment-90422" style="width: 500px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-90422" src="https://alsnewstoday.com/wp-content/uploads/2024/03/Joyful-Sorrow-Slush-Pit-1.jpg" alt="Two people on skis attempt to cross a slush pit lined with a blue tarp. Several spectators are visible in the background." width="500" height="240" data-wp-pid="90422" /><figcaption id="caption-attachment-90422" class="wp-caption-text">Skiers attempt to cross the Mont Ripley slush pit. (Photo by Kristin Neva)</figcaption></figure>
Our son made it about a third of the way across because he didn’t have enough speed from where he started. It was a good attempt for his first try, but he was soaking wet and cold, so he decided to wait till next year to try again. He plans to bring multiple changes of clothes.
As healthy as I am, I would never try it, but it improves my mental health when I can see new things and experience a change of scenery. As for Todd, it lifted his spirits when our son returned to the house soaking wet. Todd laughed out loud, and he enjoyed watching videos of the event.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

A change of scenery is helpful for mental health with ALS

Our family had another close call recently that caused us to our reexamine our methods of emergency communication.
Due to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, my husband, Todd, is completely paralyzed in all his limbs and has low lung function. He is <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">dependent on noninvasive ventilation</a> to breathe and to talk. Without his ventilator, if he tries to talk too loudly or too much, his lungs lose tidal volume and he eventually stops breathing altogether.
We have <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregivers</a> on most nights so that I can get uninterrupted sleep for six hours, and then I take care of Todd during the other 18 hours each day. When the caregiver leaves at 5 a.m., she opens Todd&#8217;s bedroom door leading to the hallway so that he can call for me when he needs help. He tries to wait until 7, which is close to the time I need to get up with the kids. If he has trouble sleeping, he often uses his <a href="https://www.youtube.com/watch?v=Zie_EMU6LnI">Alexa-compatible adjustable bed</a> to change positions, saying, for example, “Alexa, ask my bed to raise head,” or, “Alexa, ask my bed to start massage.” Or he will ask the Echo device to play music to help him relax and get back to sleep.
[recommended-reading id=90016]
<h3>A close call</h3>
Early one morning last week, I partially awoke and heard Todd talking to Alexa. I rolled over, still half asleep, and then I heard an unusual sound: It was Todd’s voice amplified and played back on his Echo Show in his bedroom and on my Echo Show in the kitchen. He had asked Alexa to “make an announcement.” I didn’t quite understand what was said, but it wasn’t even 6 a.m. yet.
I jumped out of bed and hurried to his room.
His noninvasive ventilator was beeping, as it often does when there’s a high leak due to air blowing out of Todd’s mouth while he is still sleeping. But he was awake, and I realized that the ventilator hose was disconnected from the machine and he wasn’t getting any air. The bacteria filter had popped off, and I reconnected it to the front of the machine.
After taking a few deep breaths, Todd said, “That was scary.” He explained that at 5:45, he woke to the ventilator blowing hard and alarming, and <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">he wasn’t getting any air</a>. “My first instinct was to call for you,” he continued, “but I was afraid you wouldn’t hear me and I would lose my tidal volume. I tried not to panic, and tried to have Alexa call you.”
His call to my phone went straight to voicemail because I turn my phone off at night. That way, I’m not awakened by notifications for junk email, spam text messages, or Facebook messages and posts from people who have different sleep schedules.
Todd tried to call my home phone, but his Echo Show attempted to establish a video call with my Echo Show in the kitchen. We got a voice over internet protocol phone specifically for Todd to call me, and he calls that dedicated number frequently during the day while he’s set up at his computer. But apparently, Amazon assumes Echo users want to make inter-device video calls when calling a contact at “home.” Amazon knows who in Todd’s contacts has Echo devices.
Todd then asked Alexa to make an announcement, which was broadcast on both devices, but the volume wasn’t loud enough for me to hear. Finally, he asked Alexa to set the volume of his Echo Show to 10, and he repeated the announcement: “Need help.”
“If you didn’t hear that, my next step was to play &#8216;Thunderstruck&#8217; by AC/DC on volume 10,” Todd said.
We were both shaken by the close call. Unable to go back to sleep, I lay next to Todd on his bed and we strategized on how we could prevent a reoccurrence, such as taping the filter onto the machine, or leaving my phone on at night.
After I got Todd washed up and out of bed, I <a href="https://support.apple.com/en-au/guide/iphone/iph21d43af5b/ios">searched the internet</a> and figured out how to turn off notifications on my iPhone and still get phone calls from my contacts. Since then, I’ve been sleeping with my phone on and in my room.
Todd changed my contact information on his phone, which he has linked to his Echo device, to list the voice over IP phone as my “work,” which is fitting, and he changed the settings in his Alexa app to only allow calls to his favorites, which is only me. Now he has three ways to get my attention at night if needed — announcements or calls to either phone.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

A scary incident made us rethink emergency communication methods

A couple of weeks ago, I lined up a daytime <a href="https://alsnewstoday.com/columns/accepting-help-certified-nursing-assistant-caregiving/">caregiver</a> for my husband, Todd, so I could take a day trip with our 14-year-old son to ski and snowboard. During the two-hour car ride, he introduced me to the &#8220;Bellied Up&#8221; podcast, a call-in advice show with comedians Charlie Berens and Myles, the You Betcha Guy. They invite callers to belly up to the bar and share their situation, and then the guys dispense advice with thick Midwestern accents. It’s mostly silly banter, and I’ve since listened to a few older episodes looking for a laugh.
<a href="https://podcasts.apple.com/us/podcast/maple-syrup-and-death-75/id1625967187?i=1000635005059" rel="nofollow">In one episode</a>, a man called in for advice because his girlfriend was annoyed that he was working too much during maple syrup season. “I&#8217;m a funeral director by day, and then maple syrup producer by night, pretty much.”
“Oh, you&#8217;re a funeral director,” Charlie said.
“Let&#8217;s hold on with that,” Myles interrupted. “We&#8217;re going to dive into that in a little bit here.”
I smiled, anticipating the humor that was sure to come.
[recommended-reading id=89720]
<h3>Questions for the living</h3>
Death is frequently on my mind because Todd has had <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for more than 13 years. <a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> is no joke, but both Todd and I have found comfort <a href="https://alsnewstoday.com/columns/weve-developed-dark-sense-humor-living-with-als/">when humor and grief collide</a>. We often laugh at the absurdity of the hardest parts of life.
After fleshing out the maple syrup situation, Myles asked the funeral director a question for the living: “When is too early to start looking at a plot in a cemetery? Do you have any advice on that? Should we be looking now to find some prime real estate, or can I wait a little later?”
“There’re two things that you’ll never escape,” he replied. “Death and taxes. So my piece of advice is, if you’re thinking about being buried in a cemetery, buy your plot now. That way it’s cheaper in the long run because you can prepay everything, all set ready to go right now, not pay a single penny more when your time comes, and it’s gonna be a lot cheaper now than it will be in the future.”
I’ve considered various burial sites in our area, such as a beautiful cemetery where green burial is an option. But in the green burial section, there are no headstones. While I’m drawn to the idea of my body becoming earth and providing nutrients for plants to grow, I’d also like to have a specific spot marked for my kids to visit, more than just a path that diverges into the woods to a pretty glade.
<a href="https://alsnewstoday.com/columns/honoring-family-memorial-day-visit-cemetery/">Every Memorial Day</a>, the kids and I visit Lakeside Cemetery in Hancock, Michigan, where my dad is buried, as well as his parents, both sets of his grandparents, one of his sisters, and his aunt and uncle, who were like surrogate grandparents to me. That&#8217;s where I want Todd and me to be buried, but I hadn’t considered buying a plot now.
While it’s unlikely Todd will survive for many more years with ALS, I’m only in my mid-40s. But if plots aren’t getting any cheaper, perhaps Todd and I should buy a plot for both of us now and nail things down.
I posed the question to Todd: “Should we be buried in the old section of the cemetery where my great-grandparents and my aunt are buried? There are trees there, and it&#8217;d be nice to have shade when I visit. Or should we be buried near my dad on the other side of the cemetery?”
“Will your mom be buried next to him?”
“Yes.” Her name is already on the headstone.
“That’s where we should be, too,” Todd said. “But if you get remarried, you could end up being married to him for longer than you were married to me. You could be living in Florida, and would you really want to have your body brought all the way back here?”
“I could be cremated,” I said, “and if I remarry, I wouldn’t have kids with him. I’d want to be buried where our kids would visit both of us.”
“What do you think of buttercups and daisies on the headstone?” I asked because I like wildflowers.
“I love buttercups,” Todd said, “because that’s you.” Buttercup has long been his term of affection for me. “But I want a cross.”
We&#8217;re going to design a cross with buttercups.
“Should we get the headstone made now and store it?” I asked. “We could put it in the garage — or in our living room.”
“I think if we buy a plot, we can put it at the cemetery and add the dates of death later.”
“And then we can visit our plot together,” I enthused.
“That would be romantic,” Todd said.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Category: Joyful Sorrow - a Column by Kristin Neva