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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.
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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.
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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

“It was easy, fun, and I’d do it all over again.” I know those are not the typical words used by someone who just finished participating in a research study, especially one focused on <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. But that’s exactly how I felt last week when I pressed the submit button on my final voice recording for <a href="https://saa.beckman.illinois.edu/">the Speech Accessibility Project</a>.
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> will know that, because I have ALS, one of my quests is to prevent my <a href="https://alsnewstoday.com/speech-problems/">ALS-related dysarthria</a> from robbing me of my ability to speak. <a href="https://alsnewstoday.com/columns/can-automated-technology-including-ai-help-with-als/">My other quest</a> has been <a href="https://alsnewstoday.com/columns/voice-recognition-study-ai-advancements-speech/">to support efforts</a> to improve how voice-activated devices respond to voices like mine.
Dysarthria feels like having a bad case of laryngitis and a lazy tongue that&#8217;s two steps behind what my mind wants to say. When I speak with family members and friends, they allow me the extra time it takes for me to pronounce multisyllable words or long sentences. But voice-activated devices have no such patience. I’m cut off midword, and the device searches for what it thought I said. For example, if I ask for &#8220;the best restaurants in Tucson, Arizona,&#8221; I often end up with instructions on how to get &#8220;the best rest.&#8221;
I’m sure my fellow sufferers of dysarthria can share much funnier stories than mine about their interactions with voice activation.
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The devices, however, are not to blame, and software designers don’t set out to build systems that ignore certain demographic groups or voice variations. The shortcomings result from how many and what types of voices were used to &#8220;train&#8221; the software. Giving it additional samples of irregular speech helps it recognize and better understand what a wider range of voices is saying.
That’s why when I first read about the Speech Accessibility Project in an <a href="https://alsnewstoday.com/news/university-illinois-speech-project-recruit-als-patients/">ALS News Today article</a>, I said, “Count me in.”
<h3>What happened next</h3>
I began by meeting online with the project’s speech-language pathologist, so she could assess my speech and explain how I&#8217;d make the online recordings. We reviewed the consent form, and she addressed my questions. I learned that I had three months to complete my recordings, but I could go at my own pace, stopping and starting again at the point where I&#8217;d left off.
Once I began doing my recordings, I discovered the sessions were set up as if I were playing an online game, complete with a congratulatory message each time I finished a designated level. The levels varied from containing typical single-word commands such as &#8220;stop,&#8221; &#8220;listen,&#8221; or &#8220;pause&#8221; to phrases like “What’s the temperature in Cincinnati, Ohio?” (I had to take in a big breath of air for that one!)
The Speech Accessibility Project still needs voice recordings from people besides those with ALS. People with other neurological conditions, such as <a href="https://parkinsonsnewstoday.com/">Parkinson’s disease</a>, Down syndrome, stroke, aphasia, and cerebral palsy are invited to apply. If you’re interested in participating, just follow the link above.
Let’s help technology learn more about ALS. If computers learn how to understand us better, I believe we can continue to live well while <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>.
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DAN 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.

Using my speech issues to improve voice recognition software

When I look back at photos from when my late husband, Jeff, was <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> — something I do often to find inspiration for <a href="https://alsnewstoday.com/thunder-road-juliet-taylor/">this column</a> — I&#8217;m struck by how many of our happier memories took place outdoors, even in the advanced stages of Jeff’s illness.
I guess that shouldn&#8217;t surprise me. Before his <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, we were outside all the time. When the condition became a part of our lives, we didn’t think to change that, nor was there any immediate reason to. I vividly remember the day his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a> was confirmed via a second opinion in Baltimore. Once we arrived home, we instinctively sought solace outside, sitting on one of the two wrought-iron patio chairs that we kept by the little pond in our yard.
Those chairs and that spot provided consistency and reassurance for us for the next year that we lived in that home. We’d start and end most of our days in those chairs, bundling up on the coldest days and soaking in the warmth on the summer ones. Our dog, Rudder, would always be with us, darting in and out of the tidal grasses, looking for fish and making us laugh. We also had our heaviest conversations out there. There was something about being outdoors that soothed both of us and also made us feel connected to something larger. I think it helped each of us find strength and perspective.
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<h3>A source of comfort</h3>
I find myself thinking about the peace that being outdoors brings, as warmer days work to break through here in Maryland, where I live. Although we still seem to have more cool days than warm ones, the season reminds me of how relatively healthy it felt to be outdoors during the time that Jeff was living with ALS. Every person, every family experiencing ALS has something unique to them that brings comfort, and this was ours.
<figure id="attachment_91249" aria-describedby="caption-attachment-91249" style="width: 380px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-91249 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/04/jeff-juliet-athabasca-river-380x284.jpg" alt="A man and a woman, both wearing yellow ponchos and red life jackets, sit on an orange raft while floating down a Canadian river. The water behind them has a green hue, and the riverbank is full of pine trees. It's a gray day, but the couple smiles happily." width="380" height="284" data-wp-pid="91249" /><figcaption id="caption-attachment-91249" class="wp-caption-text">Jeff Sarnacki and Juliet Taylor enjoy a day of floating on the Athabasca River in Alberta, Canada, in June 2019. (Courtesy of Juliet Taylor)</figcaption></figure>
That doesn’t mean that spending time outdoors was easy to navigate. Jeff’s <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> had started with a foot drop, and while he was able to walk outside for a few months after his diagnosis, we quickly and progressively moved from an orthotic to a rollator, to a scooter, to a power wheelchair. We chose models that allowed for Jeff to get around more easily, but it was still unwieldy to travel with this <a href="https://www.youralsguide.com/als-equipment-guide.html">equipment</a>.
Jeff was eager to travel for as long as he could, and in retrospect, I observe that we chose destinations based on outdoor activities. Our most meaningful journey while living with Jeff’s ALS came about nine months after he was diagnosed, when we traveled with two of our best friends to <a href="https://parks.canada.ca/pn-np/ab/jasper">Alberta, Canada</a>, for 10 days of wildlife viewing. We had running contests around animals spotted: first bear, most bears in a day, and so on.
Our friends Robin and JJ knew the ins and outs of ALS very well by then, staying by our side literally and figuratively throughout his illness. Encouraged by Jeff, we pushed the limits on that trip, taking his scooter off-roading (unintentionally) in national parks and persuading a rafting company to let us float down gentle rapids, even though Jeff could no longer climb into the boat. When I look at those pictures, I see the wonder and contentment in his eyes — and in mine, too.
<figure id="attachment_91250" aria-describedby="caption-attachment-91250" style="width: 380px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-91250 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/04/jeff-rudder-hilton-head-380x277.jpg" alt="A low-angle photo shows a man bundled up in a dark jacket and jeans walking on the beach with a dog. Both the man and the dog are holding either end of what appears to be a toy or stick. It's a cloudy day, and the waves lap gently against the hard-packed sand." width="380" height="277" data-wp-pid="91250" /><figcaption id="caption-attachment-91250" class="wp-caption-text">Jeff Sarnacki and his dog, Rudder, play on the hard-packed sand of Hilton Head, South Carolina, in February 2019. (Photo by Juliet Taylor)</figcaption></figure>
On another occasion, earlier in his illness, Jeff researched beaches based on the density of the sand because he could walk more easily on packed sand than on looser, more precarious ground. It’s for that reason alone that we found ourselves in <a href="https://www.hiltonhead.com/">Hilton Head, South Carolina</a>, in February, enjoying brisk walks on the beach with Rudder while Jeff was still able.
Whether it’s the change of seasons right now or the fact that next month marks the anniversary of both Jeff’s birthday and his death five days later, I&#8217;m feeling increasingly reflective about what life with ALS felt like and what it meant; what I learned and what I regret; what brought us joy and what we struggled with. In grief, I also recognize that reflecting on what brought Jeff and I joy together might also be a path to continued healing as I live without him. For this reason, I’m focused on finding more ways to enjoy the outdoors this spring.
Whether it’s being outside, taking in accessible museums, or hosting family game nights, I think it’s important to find those moments and activities, however large or small, that can bring peace and happiness while living with ALS. For me, fresh air and nature will forever remind me that even in adversity, there are places and moments that offer joy, reflection, and emotional healing.
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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.

How being outdoors brought peace and perspective, then and now

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.
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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.
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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

For those of us <a href="https://alsnewstoday.com/living-with-als/">living with ALS</a>, every day can have a stressful event. The key, I believe, is to get through the event and, if possible, <a href="https://alsnewstoday.com/columns/sense-of-humor-vital-living-with-als/">remember it later with humor</a>. Even in a parking lot.
“Let’s circle the parking lot one more time,” my agitated husband said.
“No,” I replied, “I think we’re better off staying put.”
We sat motionless in our van, in the middle of the large accessible parking lot of the Tucson Veterans Affairs (VA) Medical Center in Arizona. Thirty generous spaces surrounded us, and of course, all of them were full. It was hot outside, the inside air blowing from our van’s vents was beginning to feel stale, and my husband was losing patience — fast.
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We were there because he had a few back-to-back routine appointments, and I was following one of my ALS-related anti-stress strategies: <a href="https://alsnewstoday.com/columns/my-go-along-strategy-living-well-als/">to be a go-along</a> whenever the opportunity arises.
I looked forward to my afternoon of sitting on my mobility scooter and waiting in the lobby of the big VA medical center. Besides my favorite pastime of people-watching, I enjoy seeing the various styles of rollators and mobility scooters that roll by. I also relish the quiet time to knit and come up with ideas for <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">my next column</a>.
But first, we had to park the van. Till then, we were stuck playing the parking lot waiting game.
<h3>What happened next</h3>
The game is much like going fishing. Pick your spot, put the line in the water, and wait.
We sat near one line of parked vehicles, and our van’s hazard lights blinked while we scanned for potential movement in our line of sight. A few people walked into our zone, jangling keys and digging through pockets. But they were just false alarms and crossed through to parking lots beyond ours.
Finally, just after my husband wanted to circle the lot, a couple came into view and headed straight to a vehicle parked ahead of us and slightly to the left. We then ever so patiently waited as the woman loaded her husband’s rollator into their SUV, helped him get seated, and seated herself in the driver’s seat. Ignition on, more waiting. Brake lights on. And lastly, the SUV backed up.
At that moment, a white car pulled up next to us and wedged itself between our van and the SUV that was now in full reverse and almost clear of the coveted parking space.
“Oh no,” I remember whispering as the white car boldly drove into the now-vacated space.
My husband jumped into action. Our van lurched forward, and he honked the horn as he rolled down his window to wave his arm in disgust. What followed was much ballyhooing, posturing, and arm waving. The white car’s driver rolled down his window and extended his arm. A passerby, who unbeknown to us had witnessed the whole scene, began waving his arms too and hollered at the driver of the errant white car.
Maybe because our accessible van was much larger than his vehicle, the uproar was intimidating, or he finally realized he&#8217;d broken the unwritten parking lot code of “wait your turn,” the white car slowly backed out and sped off. I stopped holding my breath.
Thankfully, the rest of our afternoon unfolded without further incident.
<h3>Reflection</h3>
On the drive home while recounting our parking lot altercation, we noted the changing social norms. Everyone seems to be in such a rush to get somewhere that they just think about themselves. Cutting in line is rude. If the white car’s driver had politely asked us if he could take that spot because of an emergency or that he was running late, we surely would have let him in.
Then my husband told me that at his first appointment, his initial blood pressure reading was unusually high and needed to be repeated before he left the office. When his doctor questioned, my husband jokingly told him, “I think I have parking lot syndrome.”
His doctor laughed and said, “I totally understand.”
We drove home chuckling. For me, it was another day of looking for the bright side while living with ALS.
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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 humor while waiting for a space in an accessible parking lot

<a href="https://alsnewstoday.com/what-is-als/">ALS</a> was <a href="https://www.als.org/understanding-als">first identified</a> in 1869, though its <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> were <a href="https://www.pharmaceutical-technology.com/features/history-of-als/?cf-view">documented</a> in medical literature as early as 1824. It&#8217;s intriguing that the sequence of the disease today is often similar, with initial symptoms followed by an actual diagnosis.
It took four years to receive my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a>, during which time I went through <a href="https://alsnewstoday.com/columns/physical-occupational-therapy-improve-quality-life-als/">physical therapy</a>, chiropractic manipulation, myriad tests for <a href="https://parkinsonsnewstoday.com/what-is-parkinsons-disease/">Parkinson&#8217;s</a> and other illnesses, and back surgery. The <a href="https://alsnewstoday.com/living-with-als-2/">reality of ALS</a> is fraught with issues that relate to its onset typically occurring months or years before a diagnosis. In other words, there&#8217;s <a href="https://www.als.org/understanding-als/symptoms-diagnosis">no definitive way</a> to &#8220;catch it early.&#8221;
Some conditions, such as certain types of cancer, can be headed off if caught early. But many rare, degenerative diseases cannot be detected early, and even if they could, the prognosis is always the same. No remission and no dormancy. So what can we do?
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<h3>Bringing ALS to the forefront</h3>
I understand the economics of medical research and drug development aren&#8217;t conducive to dedicating much time to finding a cure for ALS. But I also understand and believe in the squeaky-wheel concept. Thus, we have to squeak much louder.
There&#8217;s a relatively small cadre of dedicated persons, medical, legal, and political, who work tirelessly to find and advocate for solutions to ease the burdens borne by ALS victims and their families. But they need help.
The way things are in our slow-paced world of drug approvals and research initiatives, those who contract ALS today have little hope they&#8217;ll see a cure or a cessation of symptoms.
As I&#8217;ve said before, <a href="https://alsnewstoday.com/columns/living-my-life-key-d-minor/">miracles do exist</a>. But I also believe we need more miracle makers and miracle assistants. One such person is Michelle Lorenz, whom I met online a few years ago and worked with to get senators to support the fast-tracking of an <a href="https://www.congress.gov/bill/117th-congress/house-bill/3537">initiative</a> to help suppress ALS.
Michelle is indefatigable and relentless when it comes to lobbying for the rights and <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a> of ALS patients. Check her out on <a href="https://www.facebook.com/michelle.lorenz.395">Facebook</a>.
It&#8217;s unimaginable that diagnosis — and thus, treatment — for one of the worst diseases known to man can take four years, as it did for me. This is not 1824 or 1869. Surely we can do better.
One of the most disquieting things for me is hearing about a younger person or a friend being diagnosed with ALS. It truly makes me sad, and recently I received news of both. I wish I had that proverbial magic wand to make it all go away or make it better.
It&#8217;s also very disheartening to hear about <a href="https://alsnewstoday.com/forms-of-als-familial-als/">familial ALS</a> cases. <a href="https://alsnewstoday.com/columns/how-familial-als-shaped-friends-journey/">I wrote about one family in a previous column</a>, and a reader shared that her family has also lost several members to ALS.
On a positive note, I just received some news of progress on the familial type. Last month, the <a href="https://www.msn.com/en-us/health/other/accumulation-of-junk-proteins-identified-as-one-cause-of-aging-and-possible-source-of-als/ar-BB1kmg6q">Spanish National Cancer Research Center</a> noted that a paper published in Molecular Cell &#8220;provides the first evidence that a possible cause of the hereditary type of ALS — familial ALS — is the accumulation in motor neurons of &#8216;junk proteins,&#8217; proteins with no function that wrongly accumulate and prevent the cell from functioning properly.&#8221; According to researchers, this finding could help them explore new treatment pathways.
We who have suffered for years — and know how hard ALS is — are deeply hurt by new cases, especially when a young person gets our disease. And knowing that anyone can get it, we encourage all who can to do all they can to put an end to this heinous condition.
Simply because a disease is rare doesn&#8217;t justify putting it on the back burner. We must give more of our time, talent, and treasure to the diagnosis, treatment, and cure for ALS. We owe it to our society.
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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 treatment. 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.

We must do more to accelerate the diagnosis and treatment of ALS

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.
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<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.
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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.
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<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.
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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

Adapt, adapt, adapt! 
Readers of <a href="https://alsnewstoday.com/living-well-with-als-dagmar-munn/">this column</a> know that&#8217;s one of my favorite mottos. I depend on it, especially because I <a href="https://alsnewstoday.com/living-with-als-2/">live with ALS</a>. It helps me deal with the condition’s ongoing changes and keeps me moving forward. But sometimes I have to push back. And when that happens, I’m perfectly OK with not accepting change or adapting.
As I wrote in the column “<a href="https://alsnewstoday.com/columns/als-adaptability-art-3-simple-steps/">The Art of ALS Adaptability</a>,” being adaptable doesn’t come naturally for many of us. It’s a skill we acquire, based on our past experiences. If you’ve lived with lots of change, had to adjust to new conditions, and problem-solved your way through various situations, adapting may be easy for you. But if you haven’t had to face many changes, there’s still hope for you. In my column I share a simple three-step method using the prompts assess, adapt, and accept.
<h3>Is it a temporary or long-term solution?</h3>
Sometimes we don’t even recognize how we are adapting. My first <a href="https://alsnewstoday.com/symptoms-of-als/">symptom of ALS</a>, for example, was a weak lower leg and a foot that dragged with each step. I unconsciously compensated by adopting a strange pirate-with-a-peg-leg walk — a workaround that certainly wasn’t working.
Soon, my lower back ached and concerned friends asked if I was OK. That pushed me to see a doctor and led to my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a>. Plus, I was issued a rollator. Maintaining the ability to walk was so important to me and my quality of life that I focused on adapting and <a href="https://alsnewstoday.com/columns/rollator-acceptance-independence/">learning to love my rollator</a>.
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<h3>This one took a long time</h3>
Although a rollator kept me balanced, the toe of one foot continued to drag with each step. My neurologist referred me to a specialty orthotic and prosthetic clinic for a pair of <a href="https://alsnewstoday.com/columns/lessons-i-learned-from-my-afos/">ankle-foot orthoses</a> (AFOs). They quickly posed the biggest challenge for me in terms of adapting to <a href="https://alsnewstoday.com/columns/lessons-i-learned-from-my-afos/">ALS-related issues</a>.
The AFOs balanced my gait, eliminated the toe drag, and allowed me to walk without becoming tired. Unfortunately, wearing them required a pair of shoes a full size longer and wider than what existed in my closet. I returned to the clinic for adjustments, tried several versions of padding to ease my aching toes, and searched the internet for adult knee-high socks (that didn’t seem to exist anymore). I even began doing exercises to strengthen my legs, and I battled the Velcro closure strips.
All in all, I’ll admit to spending the past seven years getting those AFOs to the point where they felt, as Goldilocks would say, just right.
So it was a complete surprise when, at my <a href="https://alsnewstoday.com/columns/enjoying-my-memory-scrapbook-visits-als-clinics/">recent ALS clinic appointment</a>, my neurologist posed the question, “Would you like me to write an order for a new pair of AFOs?”
My mind raced. New AFOs?
I looked down at the white plastic on my feet as images from the past seven years mixed with thoughts of new shoes, new socks, padding, fittings, and having to learn to put them on, take them off, and walk with them.
“No, thank you, I’m good,” I replied.
<h3>Why I’m not willing to change</h3>
At that moment I joined the many <a href="https://alsnewstoday.com/what-is-als/">ALS</a> patients who don’t want change. Some people fear change because they associate it with loss, risk, or failure. Others resist change because they&#8217;re comfortable with the status quo. That was me. My need to feel in control and live with a predictable situation far outweighed the temptation to own a pair of the latest, whiz-bang style of AFOs.
That’s the thing about ALS. Because it affects each person differently, our reasons to adapt or not are also different. It’s a personal choice. Not wanting to adapt to change is not a failure, but an opportunity to learn about ourselves: our fears, preconceived notions, self-confidence, and sense of self-sufficiency.
How adaptable are you? It’s a question worth pondering. I’m cheering for you because I believe we can live well while living with ALS.
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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.

Category: Columns