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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.
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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

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.
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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

When my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a>, we were living in a small rented farmhouse that we both adored. Jeff loved the sprawling lawn that led to a tidal fishing pond and the flower beds that had been meticulously planted by the home’s owner. I appreciated the interior features — a quirky chimney that twisted up through the middle of the living room and an adjoining milk house where dairy from the farm’s cows had once been stored. The home and property were cozy and peaceful. It was a special place to live, and we felt fortunate.
<figure id="attachment_90595" aria-describedby="caption-attachment-90595" style="width: 278px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-90595" style="margin-right: 10px;" src="https://alsnewstoday.com/wp-content/uploads/2024/03/wedding-day-285x380.jpg" alt="A couple stands side by side, both laughing, inside of a milk house on their rented property. They're dressed in wedding attire — the woman in a long white dress holding a bouquet, the man in a gray suit jacket and pink button-down shirt." width="278" height="371" data-wp-pid="90595" /><figcaption id="caption-attachment-90595" class="wp-caption-text">Juliet Taylor and Jeff Sarnacki on their wedding day at home, 10 days after Jeff&#8217;s ALS diagnosis in 2018. (Courtesy of Juliet Taylor)</figcaption></figure>
Ten days after Jeff’s <a href="https://alsnewstoday.com/what-is-als/">ALS</a> diagnosis, he and I got married in the milk house. Our neighbor, who had become a fast friend and confidant, officiated the short ceremony, and afterward we went to our favorite deli for a wedding breakfast. I wore a rented dress and carried flowers from the grocery store. It couldn&#8217;t have been more perfect.
So it was with sadness when we realized that we wouldn’t be able to stay in our beloved home. No one knows the <a href="https://alsnewstoday.com/living-with-als-2/">timeline of their ALS</a>, and in Jeff’s case, his progression was fast. Within 10 months of diagnosis, he needed a <a href="https://www.youralsguide.com/power-wheelchairs.html">power wheelchair</a>. At 425 pounds, the chair was too unwieldy to traverse the chimney in the living room or navigate the narrow hallways. Each entrance to the house had steps — not many, but just enough to make getting in and out impossible.
With regret, we realized we would need to move — yet another loss in the constant barrage of losses that ALS brings. Neither of us wanted to go, but we realized it was necessary for Jeff’s safety. This was not just an emotional loss but a financial one as well. ALS is staggeringly expensive, and renting had been a perfect solution for us, allowing us to save our nest egg for other needs.
[recommended-reading id=82296]
<h3>An emotional search</h3>
We approached our home search with little enthusiasm. Our needs were specific and a constant, piercing reminder of what ALS was taking from Jeff: no steps, no thresholds, wide doorways. Our focus was, as it needed to be, on safety and physical well-being.
We enlisted the help of our dear friend Lindsay, who was a local real estate agent, with what we knew would be a challenging search for a new home. Together the three of us developed a game plan: Jeff and Lindsay would identify possible homes online, and Lindsay and I would go see them. If we felt like the home could work — that he could get in and out safely, that the home was truly <a href="https://www.youralsguide.com/als-home-accessibility.html">accessible</a> or had the potential to be — we would go back with Jeff so that he could see it in person.
The home search was more emotional than I expected. Because we were sad to be leaving a place that we loved, nothing felt right. Some homes carried their own sadness, as well — ramps that had been constructed hurriedly or haphazardly, unusual modifications that had been made to accommodate wheelchairs and hospital beds, a reality we knew all too well.
In one case, a home looked perfect online, and when we arrived, all of the solidly constructed ramps had been removed to make it appealing to a wider array of buyers.
<h3>Home is what you make it</h3>
Discouraged after four months of house-hunting, and after several falls in our original rented home, Jeff expanded our geographic search. In doing so, he found a little cottage on Maryland’s eastern shore, about 25 miles from our original place. At 70 years old, the one-level home had been remodeled a few times. Its wide kitchen and great room offered space to navigate Jeff’s wheelchair, and there wasn’t a single stair in sight. It was situated on a calm creek where Jeff could enjoy nature. It seemed perfect.
<figure id="attachment_90597" aria-describedby="caption-attachment-90597" style="width: 380px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-90597 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/03/new-home-380x285.jpg" alt="A man reclines in his power wheelchair on a patio behind his home. He's petting one dog with his left hand while another dog lies a few feet away, and looking out at a river." width="380" height="285" data-wp-pid="90597" /><figcaption id="caption-attachment-90597" class="wp-caption-text">Jeff Sarnacki enjoys a day outdoors with Rudder, left, and Sailor at their new home in 2020. (Photo by Juliet Taylor)</figcaption></figure>
Lindsay and I pre-screened the home before bringing Jeff, and she and I were both optimistic. When Jeff rolled in on a visit the next day, he was silent. He checked out all the rooms with ease, and while Lindsay and I were talking in the living room, we noticed he was already in the backyard, which he’d been able to reach without assistance. I was hopeful.
When he came back inside, he gave both of us a smile and a thumbs-up. About a month later, aided by nearly 40 friends who came to help us move, we settled into the place where I’m writing this column today.
While it wasn’t the home we thought we’d wanted, it turned out to be perfect — a place where we made memories, visited with loved ones, and most importantly, lived safely and peacefully with Jeff’s ALS. I learned in our search that, when <a href="https://www.als.org/navigating-als/living-with-als">living with ALS</a>, flexibility and perspective are everything, and home is what you make it.
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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.

The long search to find an accessible home while living with ALS

A conference in July will feature &#8220;diverse perspectives,&#8221; including patient presentations and discussions featuring people living with <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) along with clinical and research experts.
That&#8217;s according to the <a href="https://www.als.org/">ALS Association</a>, which said its inaugural <a href="https://www.als.org/als-nexus/registration">ALS Nexus Conference</a> will be held July 14-17 at the Gaylord Texan Resort &amp; Conference Center in Grapevine, Texas.
“ALS Nexus represents a significant step forward in our efforts to transform the experience of living with ALS,” Nicole Eck, chief strategy officer at the ALS Association, said in an <a href="https://www.prnewswire.com/news-releases/the-als-association-announces-inaugural-als-nexus-conference-302097321.html">association press release</a>. “While there have always been separate conferences focused on ALS research, advocacy, or care, this will be the first conference integrating these areas around how we specifically make ALS livable and cure it.”
Attendees will be able to connect with peers and gain insights into the needs and experiences of the ALS community, and contribute to discussions that influence research, advocacy, and patient care initiatives, the association said.
[recommended-reading id=90530]
<h3>Spotlighting people living with ALS</h3>
Sessions will spotlight novel solutions with an emphasis on the value of interdisciplinary collaboration, and will feature clinicians and researchers who specialize in ALS, as well as ALS patients and their families and friends.
<a href="https://www.als.org/als-nexus/agenda">Topics</a> will include <a href="https://alsnewstoday.com/als-treatment/">ALS treatment</a> development, care access, the changing care landscape, palliative care, insurance coverage, and clinical trial efficiency. Sessions also will cover technology and ALS, next-generation research strategies, the power of caregiving, affordable access to genetic therapies, health disparities, <a href="https://alsnewstoday.com/forms-of-als/familial-als/">familial ALS</a>, and future advancements in treatment and care.
The conference will be structured around finding new treatments and cures, optimizing current treatments and care, and preventing or delaying the <a href="https://alsnewstoday.com/als-symptoms/">manifestations of ALS</a>, the association said.
Participants are invited to attend the 10th anniversary of the <a href="https://alsnewstoday.com/news/ice-bucket-challenge-dramatically-affected-als-fight/">Ice Bucket Challenge</a> on July 16 at the nearby Paradise Springs water park. The challenge, designed to promote ALS awareness, has resulted in a marked increase in spending on research.
Patients and caregivers may attend the conference virtually or in person at no charge. The virtual option includes live-streamed and breakout sessions, as well as opportunities to connect with others. <a href="https://web.cvent.com/event/e158cb6f-97c0-4a56-b5f9-fbd4509b34a4/register">Registration</a> is open.
Registration for in-person attendance is available to scientists, healthcare professionals, advocates, patients, and others. It includes access to the July 14 welcome reception and the following day&#8217;s Heroes Award dinner, in addition to all conference sessions. Clinicians and researchers also will be welcome at networking events. Lunch will be provided daily.
Early registration, which offers lower rates, ends on May 10. Standard registration runs to July 13. On-site registration also is available, but &#8220;space is limited, and early registration encouraged,&#8221; the organization said.
For all paid registrants, there is a $250 cancellation fee, with balances refunded until May 17.
The ALS Association, the world&#8217;s largest ALS organization, funds global research collaborations, assists patients and their families, and advocates for patients.

Association conference features living with ALS as part of program

One of my duties as a moderator for the <a href="https://alsnewstoday.com/forums/">ALS News Today Forums</a> is to encourage new members to discuss their worries about <a href="https://alsnewstoday.com/living-with-als-2/">living with the disease</a>. I often find myself repeating the same advice over and over: that they be open to changing their perspective, that they alone are responsible for their attitude, and that they shouldn&#8217;t discount how humor can help perspective and attitude.
Many members are <a href="https://alsnewstoday.com/newly-diagnosed-you-are-not-alone-on-your-journey/">newly diagnosed ALS patients</a> who are stuck imagining end-of-the-world, worst-case scenarios of their disease. Envisioning total paralysis, inability to speak, and dependence on a feeding tube for nourishment, they ask, “What if that happens to me?”
I’ll admit that after receiving my <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis of ALS</a> in 2010, my thoughts were the same. But I also knew that those scenarios had not yet happened to me. And maybe, if I followed my doctor’s recommendations and took care of myself and my attitude, I could extend the time of my <a href="https://alsnewstoday.com/symptoms-of-als/">symptom progression</a>.
[recommended-reading id=77415]
I also found inspiration from the memoir &#8220;<a href="https://www.beacon.org/Mans-Search-for-Meaning-P602.aspx" rel="nofollow">Man’s Search for Meaning</a>,&#8221; by the neurologist, psychiatrist, and Holocaust survivor <a href="https://www.viktorfrankl.org/lifeandwork.html" rel="nofollow">Victor Frankl</a>, and especially <a href="https://www.psychologytoday.com/us/blog/everyday-resilience/202207/humour-pillar-resiliency">one particular quote from him</a>: “Humour more than anything else in the human make-up, can afford aloofness and an ability to rise above any situation, even if only for a few seconds.”
Humor is something I rely on to help me live with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. A fun, change-of-perspective example is when I challenged myself to find something, anything, positive about my ALS symptoms.
My current symptoms include weak legs and feet, as well as speaking and swallowing difficulties. Here is the tongue-in-cheek result of that thought experiment.
<h3>A positive view</h3>
Because most of my exercise routines are done on the floor, I can relive my childhood! Crawling, rolling, and other simple movements are far from the complicated aerobics I used to do. But while I&#8217;m on the floor, I let myself enjoy being a kid again. A side benefit is that I can also locate items lost under our living room chairs.
Having slow speech has probably saved me from interrupting heated discussions with an impulsive remark or snappy reply. In my mind, I’m thinking of a billion possible quips. Instead, I’m left listening, choosing my words carefully, and responding when it’s my turn to speak. Not as fun, but certainly civilized and much safer.
<a href="https://alsnewstoday.com/columns/als-hard-act-swallow-tips/">My swallowing issues</a> remind me to follow my mother’s warnings and advice. “Take small bites, eat slowly, and never talk with your mouth full,” she&#8217;d always say. It&#8217;s funny that all my past years of speed-eating in college have been successfully corrected by ALS.
<h3>Life comes with change</h3>
That’s the thing about life with ALS: Change can happen at any time, and then again, not happen for a long while. And it doesn’t matter if we are holding our breath bracing for the next worst thing; as long as our mind is at a standstill, we are not living.
Remember, many factors influence our quality of life with ALS. But only one factor exists that you, the patient, can have a direct influence over. That&#8217;s your attitude. And let a good part of that attitude include humor. It’s one more way we can to learn to live well 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.

How a changed perspective and a little humor help me with ALS

I have always been a summer person, relishing how everything in nature quietly comes to life — lush, green grass, abundant wildlife, and densely leafy trees. To me, summer evokes peace, calm, and lazier days.
My late husband, Jeff, on the other hand, was a winter person. As much as he enjoyed being outside in shorts and flip-flops on a hot July day, he came to life in winter. His enthusiasm for a belting snowstorm was childlike, and on days when we woke up to snow coating the yard, he was eager to get outside with our dogs. He’d race with them in the snow, watching them dance around while he built a snowman. I would reluctantly join him from the warmth of the house and my coffee, but always was glad when I did, if for no other reason than to observe his unabashed glee.
Jeff lived with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> for two winters before he died from the disease in May 2020. The first winter, we chased fun. He was <a href="https://alsnewstoday.com/newly-diagnosed-taking-the-first-step-on-your-journey/">newly diagnosed</a> and his <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> were still relatively mild, so being outside was still easy. His case of ALS was <a href="https://www.als.net/news/what-is-limb-onset-als/">limb-onset</a>, with his feet and legs the first affected. We used an <a href="https://orthoinfo.aaos.org/en/treatment/orthotics">orthotic</a> to steady his weakened right leg and sometimes a <a href="https://alsnewstoday.com/columns/als-patient-learned-roll-through-life-with-rollators/">rollator</a> for added support as he moved both inside and outside the house.
Falling, which can be fatal and is a frequent concern in ALS, seemed less of a risk that year, so we felt safe to head outside when snow blanketed our yard. I have beautiful memories of a snowman he built with one of our nieces during that first winter with ALS. At that time, his ultimately fast progression seemed slow, and while we were emotionally devastated by his new <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>, his physical limitations were minor. At the time, we felt like this would always be so.
[recommended-reading id=89361]
<h3>The impact of bad weather</h3>
Our second winter <a href="https://alsnewstoday.com/living-with-als-2/">living with Jeff’s ALS</a> was a different story altogether. Jeff was, by October 2019, using a <a href="https://www.youralsguide.com/power-wheelchairs.html">power wheelchair</a> full time, and I remember what an impact weather of any sort — snowstorms, ice storms, thunderstorms, high winds — had on our planning for his comfort and safety.
By this time, we’d moved from our rambling, rented farmhouse on 2 acres to a mobility-friendly cottage with wide doors, no thresholds, and a large, wide driveway and garage. This latter feature made it possible for Jeff to move from the house to the <a href="https://www.youralsguide.com/transportation.html">mobility van</a> without being exposed to the elements. It seemed like a perfect solution.
Snow, ice, and rain had other implications, though, once we left the house. Transferring out of the van and crossing the parking lot for medical appointments meant traversing through ice, and the wheels of his power chair sometimes struggled to grip. The chair itself was 425 pounds and couldn’t be manually pushed if we encountered a slushy patch. I remember walking behind Jeff as we traveled the snowy sidewalks, trying to balance my concern and desire to help with recognizing his need for independence and dignity.
If I could, in bad weather I’d drop Jeff at a covered spot and go park the van, but leaving him unattended for even a few minutes was scary — not for Jeff, who as a former law enforcement officer was always evaluating risk, but for me. I remember once dropping him at the disability entrance to the airport and asking him to wait a few minutes while I parked. When I returned, he was nowhere to be found. He’d gone inside the airport, somehow trailing our two carry-on bags, and was headed toward the gate without me. While that memory always makes me laugh, Jeff’s fierce independence was something I respected, understood, and had to account for when we left home, no matter the weather.
<figure id="attachment_89618" aria-describedby="caption-attachment-89618" style="width: 380px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-89618 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/01/jeff-emma-snowman-380x380.jpg" alt="A man and his young niece, who could be 8 or 9, stand on either side of a small snowman they built. The man is leaning over, with his hands on his knees, to fit into the frame with the girl and the snowman. They're standing in a large yard that's mostly covered in snow, but a few grassy patches are visible under some trees in the background." width="380" height="380" data-wp-pid="89618" /><figcaption id="caption-attachment-89618" class="wp-caption-text">Jeff Sarnacki and one of his nieces build a snowman in Annapolis, Maryland, during Jeff&#8217;s first winter living with ALS, in January 2019. (Photo by Juliet Taylor)</figcaption></figure>
Thunderstorms and wind created anxiety, too, for fear of losing power. We didn’t have a generator, and anyone living with <a href="https://www.als.org/understanding-als/stages">more advanced stages of ALS</a> will understand the dependence on electricity. We had literally dozens of pieces of medical equipment that needed to be charged, from life-support equipment like his BIPAP and cough-assist machines to mobility aids like his Hoyer lift and power chair. Without power, Jeff’s safety was deeply compromised.
In retrospect, we were fortunate during Jeff’s 19 months living with ALS that our fears — my fears — about weather never led to a fall, a loss of power, or a serious hardship for him.
With icy weather gripping much of North America this winter, my first thoughts are no longer of a pretty snowstorm or cozy days watching from inside with coffee. Weather can impact every part of an ALS family’s planning and psyche, creating anxiety and fear. We must plan ahead with extra care, and even then sometimes rely on luck, to ensure the safety of our loved ones and ourselves.
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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 winter weather brings stress when living with ALS

One of my favorite Christmas gifts this year was balsamic vinegar — two bottles, actually — that my husband, Todd, gave me. Todd has <a href="https://alsnewstoday.com/what-is-als/">ALS</a> and is paralyzed, so he spends time watching YouTube videos about various subjects. A couple months ago, he came across a video that explained the process of making balsamic vinegar and the various grades of the product.
He ordered two bottles imported from Modena, Italy, for my Christmas gift. Because he knew I&#8217;d enjoy the gift more if I understood it, he explained that the small bottle was 100% pure grape musk and aged for 12 years, and the larger bottle was made by boiling and reducing wine vinegar and blending it with pure balsamic vinegar.
I had no idea that the quality and prices of balsamic vinegar varied so much. At the low end of the market, it could cost less than $0.20 per ounce. Something like that might be boiled wine vinegar with sugar added and just a little bit of grape musk. At the high end, a 100% grape musk balsamic vinegar aged for 25 years would be more than $36 per ounce.
The larger bottle that Todd gave me was a middle-tier blend, maybe something around $5.50 per ounce, and the small bottle was close to premium. Either is much more expensive than any balsamic vinegar I find on the shelves of our local grocery store. I was excited to try them.
[recommended-reading id=86132]
I first opened the larger bottle. It was so good. For the last couple weeks, we’ve been eating it on many different dishes — salads, sautéed vegetables, fish, and even ice cream. If the moderately priced vinegar was that good, what would the expensive version taste like? But if we tasted the premium balsamic, we might lose our appreciation for the less expensive bottle.
“Maybe we should wait until we finish this bottle,” I said as I sprinkled some balsamic on Todd’s sandwich wrap.
“I’ve been thinking that, too,” he agreed, “but I do want to taste it before I die.”
We both laughed at the strange calculations we make when <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>. Todd’s <a href="https://alsnewstoday.com/columns/preparing-respiratory-emergency/">breathing is getting progressively weaker</a>, but we don’t have a sense if he has weeks, months, or years left.
<h3>Weighing the costs and benefits</h3>
After Todd was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in 2010, we had to make similar calculations about whether to address several of his unfulfilled dreams, but with the vague idea that he’d have two to five years. He&#8217;d wanted a boat, but figured he&#8217;d soon be unable to use it. He scratched the boat off his list and let that dream die.
Todd wanted to make decisions that would put me and <a href="https://alsnewstoday.com/columns/help-kids-cope-death/">our kids</a> in the best financial position possible. We had to assess if it was worth the money to renovate our home and <a href="https://www.youtube.com/watch?v=ucgcZxxH2b8&amp;t=299s">bathroom</a>, but we determined our money was best spent building a new accessible home. It was better to be near family, anyhow, and money spent on a well-designed home would be equity for me in the future.
One of Todd’s smaller dreams that didn’t break the bank was a full frame DSLR camera. He thought that we could capture memories for the family, even if I was the one taking pictures.
We also purchased an accessible van and used it to travel to the <a href="https://alsnewstoday.com/columns/i-treat-my-als-clinic-like-olympic-challenge/">ALS clinic</a>, go on several family vacations, and <a href="https://alsnewstoday.com/columns/outings-family-wheelchair/">attend local events</a>. But if our heavily salted roads bring an early demise to his now 12-year-old van, we wouldn&#8217;t replace it because Todd only left our home twice last year — once to visit the doctor and another time to visit the dentist. We’d just hire a transport service for the few times he might need to get out for the rest of his life.
People living with ALS need to weigh the cost and benefit of such purchases. These decisions depend on how fast the disease is progressing and what interventions people plan to take.
Priorities change with a shortened timeline; perhaps build an accessible home with years to live, and perhaps open a premium bottle of 12-year aged balsamic vinegar with possibly only months to live.
Last weekend, we opened the small bottle of balsamic vinegar. Todd and I both closed our eyes for a taste test. We each determined that the two tasted different, but neither of us could tell which one was supposed to taste better.
In guessing which one was the premium balsamic vinegar, we were both wrong. We each chose the moderately priced vinegar as having superior flavor, but the really expensive stuff was almost indistinguishable.
So we’re glad we didn’t wait to open that bottle. We’ll enjoy them both, and when we finish them, we’ll reorder the cheaper option.
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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.

The strange calculations we make while living with ALS

I love it when all of my planning unfolds exactly as expected, and at the end of the day, I can pause to exhale, smile, and tell myself, “That went extremely well.” I wasn’t always an avid planner, but I&#8217;ve become one. Planning is just one of the <a href="https://alsnewstoday.com/columns/strategies-improve-emotional-well-being/">many strategies</a> I now use to help me live with my <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
Occasionally, however, life throws a few speed bumps onto my path, and I’m forced to employ a different strategy altogether — to improvise!
Fresh in my mind is the holiday buffet we recently attended at a fancy-schmancy local hotel known for its lavish events. My husband and I went there for a Christmas Day meeting with several relatives we hadn’t seen for years. We both looked forward to it, and of course, I dove into a planning frenzy.
My clothes were selected several days ahead, I mentally timed out the sequence of getting ready so I wouldn&#8217;t feel rushed, and on the day of the event, it all seemed to be coming together like clockwork.
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<h3>A musical surprise</h3>
Arriving at the hotel, we met up with our relatives and found our table in the big ballroom that was already bustling with other diners. While chatting and sharing family memories, someone at our table complimented me on my speech. They were aware of my <a href="https://alsnewstoday.com/symptoms-of-als/">ALS symptoms</a> and told me that my pronunciation was very good.
My mind quickly recounted all the months of daily practice I’d put in to improve my <a href="https://alsnewstoday.com/speech-problems/">ALS dysarthria</a> — all the breath work, posture control, and repetition of sounds and words. Mentally, I gave myself a generous pat on the back.
But then, suddenly, the background music started up. Oh, my!
The lone musician had been on break when we arrived. Now fully rejuvenated, he energetically strummed his acoustic guitar, noisily filling the ballroom with jazzy selections from the &#8217;70s and &#8217;80s.
People around me didn’t seem to mind; they began talking louder, something I couldn’t do, as I was already at my full volume. Dismayed but not deterred, l improvised, adding facial expressions, big gestures, and creative body language to my words.
And you know what? It worked. I didn’t feel self-conscious, and those at my table seemed to appreciate my extra effort.
<h3>Buffeting the buffet line</h3>
It was soon time to fill our plates with holiday food. I learned long ago that riding a mobility scooter among people in a buffet line just doesn’t work well. It’s better that I stay at the table while my husband kindly fills a plate and brings it to me.
Planning for this event included checking the hotel’s website for its holiday menu and coaching my husband on the various selections I&#8217;d like to have.
A well-laid plan. Or so I thought.
The melody of the Eagles&#8217; &#8220;<a href="https://www.youtube.com/watch?v=09839DpTctU" rel="nofollow">Hotel California</a>&#8221; filled the room while I patiently waited at our table. But my husband returned with a frustrated expression and an empty plate. “They don’t have any salmon or mashed potatoes or Brussels sprouts, or that other thing you wanted. What should I do?”
Maybe they changed the menu, or maybe they ran out of my choices. Either way, I gathered my courage and promised myself to keep an open mind.
Slowly maneuvering my scooter toward the buffet line, I carefully avoided wayward children and distracted adults. Well-polished toes in sandals came dangerously close to being run over by my scooter’s wheels. As I peeked between bodies hovering at the dishes of food, my husband and I worked as a well-practiced tag team. I’d point to a steaming chafing dish, and he’d dash in to scoop a spoonful onto the plate he held.
And you know what? The food was great. The whole day was fun. As I fell asleep that night, I sighed and said, “That went well.”
That’s the thing about planning. I’ve learned it can help and bring me peace of mind. But I always have to be ready to improvise. It’s the same with ALS. Prepare, but be willing to go with the flow if ALS symptoms change. That helps me learn to live well while <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
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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.

Improvising to go with the flow while living with ALS

After I finished this holiday season’s wreath orders, I moved my wreath-making table out of the dining room back into the garage and put away extra pine cones, bows, and birch bark. The room felt spacious without the clutter, and I told my husband, Todd, “This reminds me of the story of the farmer.”
Over the years, when the occasion fit, my husband, Todd, or I would bring up <a href="https://www.beliefnet.com/love-family/parenting/2000/10/teaching-tales-the-way-you-like-it.aspx" rel="nofollow">a traditional Jewish parable</a> we&#8217;d once heard. Here&#8217;s one version of the gist of the tale:
<blockquote>&#8220;A poor farmer once lived in a small cottage with his wife and many children, and he complained to his rabbi about how his house was too small.
“Bring in the cow,” the rabbi told him.
The house seemed even smaller, and so he went to visit the rabbi again.
“Bring in the chickens,” the rabbi said.
The noise and stench was unbearable. He went to see the rabbi.
“Take all the animals out,” the rabbi said.
And the farmer was delighted with his spacious home.&#8221;</blockquote>
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Often, people struggle and then experience a victory of sorts — a new job after unemployment, or health after a serious illness. The better times aren&#8217;t always without trauma, but there comes a point where a new normal is built.
But <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> is in a different class of struggle, one in which difficult times are followed by more difficult times. ALS is not one of those things you get through to the other side. It keeps getting harder and putting on more pressure. There&#8217;s rarely a sense of relief, as the farmer experienced. Perspective can be hard to come by with a progressive disease.
<h3>Moving on from a brutal illness</h3>
However, I just experienced a rare moment when things got easier. I got a bad cold, and figuratively, that was like bringing the cows and chickens into my house.
When I was sick, <a href="https://alsnewstoday.com/columns/feeling-sick-powerless-als-caregiver/">all I wanted to do was rest, which was impossible</a> because I needed to care for Todd, who has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. I kept my distance from him as much as I could so he wouldn’t get sick, because any bug could kill him. His lung function is very weak, and recently he&#8217;s seemed increasingly dependent on <a href="https://alsnewstoday.com/columns/breathing-easier-support-noninvasive-ventilator/">his noninvasive ventilator</a>. He could barely say more than a few sentences off his vent, and we started leaving it on while transferring him into bed.
My bug had curtailed other activities. Todd and I couldn&#8217;t watch shows together. I canceled our family’s weekend plans to get our Christmas tree up. The following weekend, I was still fatigued, but I pushed myself to go out to the woods with the kids to cut down a spruce.
While I was still recovering, Todd’s lungs seemed to improve a bit, and he wondered if he&#8217;d been fighting my bug, too, albeit a much milder version. And then after nearly two weeks of being sick, I felt mostly back to my usual self.
It was such a relief. Todd and I could again watch a movie together. I could <a href="https://alsnewstoday.com/columns/delight-suffering-joy/">delight</a> in our pretty Christmas tree that the kids had decorated.
“It reminds me of the farmer,” I told Todd.
This Christmas, I’m thankful we’ll be able to enjoy the simple pleasures.
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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.

Tag: living with ALS