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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.
[recommended-reading id=75910]
<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

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

Even before my late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in 2018, we approached his unusual and alarming <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> as a team. He’d shared with me from the beginning his painless but mysterious foot drop, and together our concerns grew when he began to slur his speech. From that point forward, we braved his eventual <a href="https://alsnewstoday.com/what-is-als/">ALS</a> diagnosis as partners. We each had a role to play and stayed united in making sure that he — and we— <a href="https://alsnewstoday.com/living-with-als-2/">lived as well as we could with ALS</a>.
I credit Jeff for that approach. As a former federal law enforcement agent, Jeff was calm, strategic, and methodical in a crisis, and ALS was no different. He was intentional about how he wanted us to live during his illness and pragmatic about preparing for the future.
Living with Jeff’s ALS brought us closer in almost every way: We laughed more often and more easily, cried together for the first time, and then dozens more times. We marveled at the beauty of simple things, particularly nature, in ways beyond our comprehension before ALS. But for all the ways that Jeff and I deepened our bond while he was living with ALS, there is one thing I never shared with him: my fears and challenges regarding <a href="https://www.iamals.org/get-help/caregivers-start-here/">caregiving</a>.
[recommended-reading id=79305]
<h3>An evolution in understanding</h3>
<figure id="attachment_90468" aria-describedby="caption-attachment-90468" style="width: 285px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-90468 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2024/03/christmas-day-walk-2019-285x380.jpg" alt="A man, woman, and dog pose on a wooden walkway in front of a lake. The couple looks each other in the face as the photo is taken. They're wearing winter clothing, and the man is sitting in a power wheelchair, covered in a blanket. Next to them is a dog sitting with his tongue out. It's a picturesque winter scene." width="285" height="380" data-wp-pid="90468" /><figcaption id="caption-attachment-90468" class="wp-caption-text">Jeff Sarnacki, Juliet Taylor, and their dog, Rudder, enjoy a walk during Christmas week in 2019. (Courtesy of Juliet Taylor)</figcaption></figure>
During our family’s life with ALS, I always thought that Jeff had the far harder of the roles between patient and caregiver. I still do. He was the one whose once-strong cyclist’s body was deteriorating, and who dealt with daily losses of function and freedom. He was the one who had to rely on help for nearly everything, surely a major blow to someone who’d mowed lawns, changed lightbulbs, cooked gourmet meals, and otherwise tended to people he loved all of his life.
So, as Jeff’s caregiver, I felt crushing guilt admitting to myself, to him, or to others that it was a challenging role. And, therefore, I usually didn’t.
Caregiving, for us, meant nightly bathroom trips at 3 a.m. that took 90 minutes round-trip via a <a href="https://www.hoyerlift.com/">Hoyer lift</a> from our bed about 20 feet away, with me sleeping at Jeff’s feet while he used the restroom. It meant cleaning catheters and feeding tubes and cough machines multiple times a day. It meant holding my husband’s body steady on a bath chair with one hand while bathing him with the other.
Caregiving meant <a href="https://alsnewstoday.com/perspective-what-i-learned-in-13-years-of-als-caregiving/">dressing and undressing</a> his paralyzed body each morning and night. It meant calling 911 when Jeff fell and I couldn&#8217;t move his 265-pound frame. It meant, for both of us, doing all of these things while utterly exhausted as day and night blended together.
When Jeff would text me, &#8220;I am sorry you have to do this for me,&#8221; I&#8217;d always have the same response: &#8220;You would do it for me.&#8221; And his eyes would brim with tears and he would nod. We both knew he&#8217;d do the same if our roles were reversed. And so, with just a few words, we understood each other.
<figure id="attachment_90470" aria-describedby="caption-attachment-90470" style="width: 260px" class="wp-caption alignleft"><img loading="lazy" decoding="async" class="wp-image-90470" style="margin-right: 10px;" src="https://alsnewstoday.com/wp-content/uploads/2024/03/jeff-julie-rudder-600x800.jpg" alt="A man, woman, and dog inside the living room of a house. The man and woman are both smiling and have their hands on the dog. The man is leaning into the photo from the right side of the frame, while the woman is in the center, squatting down to be at the dog's level. The dog looks off to the left side of the frame." width="260" height="347" data-wp-pid="90470" /><figcaption id="caption-attachment-90470" class="wp-caption-text">Jeff Sarnacki, Juliet Taylor, and their dog, Rudder, pose for a photo in the summer of 2019. (Courtesy of Juliet Taylor)</figcaption></figure>
It’s only with the passage of time — Jeff will have been gone four years this May — and the kindness and encouragement from connecting with <a href="https://www.iamals.org/stories/">other ALS families</a> that I’ve been able to say that caregiving was difficult. Yet, it still feels like a betrayal of Jeff and an insult to those living with ALS to admit that caregiving is hard, because I recognize that living with ALS is harder.
There is a movement afoot in the <a href="https://alsnewstoday.com/forums">ALS community</a> to recognize the stresses on caregivers and to find and create more support for them. We are encouraging caregivers and their loved ones with ALS to have more honest conversations, released from the guilt that I and probably so many others felt, and feel.
I’m evolving to understand that two things can be true at once: Caregiving for Jeff was the most meaningful, rewarding, and loving thing I have ever done, and it was also the most challenging, both mentally and physically. I would give anything to have him back and would care for him for 100 more years if I had the opportunity. But in the throes of ALS, like thousands of families are right now, each day brings new fears, new demands, and new difficulties.
ALS brought Jeff and I closer, yes, but I wish we’d talked more about our respective roles as a person living with ALS and a caregiver. I know that Jeff was protecting me from worrying about him, and I was doing the same for him. While it was a logical decision at the time, designed to shield each other in a time of crisis, I know that our love and our relationship could have borne the discussion.
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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.

Why talking about caregiving is hard — but so important

I’ve written before about how my late husband, Jeff, <a href="https://alsnewstoday.com/columns/after-als-diagnosis-late-husband-turned-lou-gehrig/">drew inspiration from Lou Gehrig</a>, even before his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> in 2018. Today, I’m sharing how I now do the same through <a href="https://www.livelikelou.org/">Live Like Lou</a>, the ALS organization that bears Gehrig’s name.
When I met Jeff, I was charmed to learn about a neighborhood yard beautification award he’d won for tending the landscape and planting flowers at his home. His sloping front yard was filled with rose bushes and bloomed riotously each spring, summer, and fall.
As I got to know him better, I discovered that nurturing — of people, animals, and the natural world around him — brought Jeff joy and meaning. While his <a href="https://alsnewstoday.com/symptoms-of-als/">physical strength diminished</a> with his illness, his happiness from outdoor work remained. Even after he could no longer walk, he’d drive our riding lawn mower, operating the controls with his still-strong arms. I’d watch from the living room windows, balancing — as always with <a href="https://alsnewstoday.com/what-is-als/">ALS</a> — his need for normalcy and dignity with his safety.
[recommended-reading id=89226]
Giving up his landscaping projects was painful for Jeff. ALS took so many things in relatively rapid succession that we had to adapt with little time to reflect. That’s why a local neighbor’s email to me was a welcome gift in the early spring of 2020. He was a university student and member of the <a href="https://phideltatheta.org/" rel="nofollow">Phi Delta Theta</a> fraternity and asked if he could come to our home with some fraternity brothers and do our sorely neglected yardwork.
It was through this outreach that I discovered, and came to love, Live Like Lou, a not-for-profit organization created and driven by Phi Delta Theta, of which Gehrig was a member. In addition to furthering research and building awareness of ALS, Live Like Lou helps <a href="https://www.livelikelou.org/als-families">ALS families</a> at home through the volunteer efforts of fraternity members. It also provides respite and home improvement grants as well as financial assistance for dependents of those with ALS to pursue higher education through a competitive scholarship program.
<h3>Honoring and helping ALS families</h3>
In the past year, I’ve had the joy of getting to know Wendy Faust, the executive director of Live Like Lou. We bonded at last year’s <a href="https://lg4day.com/">Lou Gehrig Day</a> MLB game in Atlanta, where the Braves hosted an engaging and moving LG4ALSDay program, a highlight of which was the on-field recognition of Live Like Lou award and scholarship recipients.
I’ve chosen to highlight Live Like Lou in today’s column as its <a href="https://www.livelikelou.org/news/iron-horse-scholarship-application-open-for-2024">Iron Horse Scholarship</a> program is in its final days of accepting applications, closing on Wednesday, Feb. 21. It’s not too late to submit an application for this year, or better yet, begin preparing for 2025.
This competitive scholarship awards ALS dependents with money for post-secondary education to the tune of $2,130 a semester, in honor of Gehrig’s record of 2,130 consecutive games played. One-time Onward Awards, which come in varying amounts, are granted to runners-up of the Iron Horse award.
As many reading this column will know, ALS can take a devastating financial toll on a family. The Iron Horse Scholarship and Onward Awards help to cushion that blow.
Through email, Faust shared with me that “the exceptional growth in interest for Live Like Lou’s Iron Horse Scholarships is both exciting and heartbreaking. I know our committee and board wish we could fund scholarships for each individual who has been affected by ALS and wants to pursue college. We’ve gone from 12 applicants in 2021 to 83 in 2023, and the need is greater than ever as the brutal reality of this disease leaves many ALS families in financial need for years — if not generations — to come.
“We are honored that word has gotten out about these scholarships and that we can honor the mighty families in the Live Like Lou community with funds to ensure their loved ones can achieve their higher education dreams,” she added.
Faust reports that the Iron Horse Scholarship funding has been the reason some students are able to finish college, stay close to home to help with caregiving, or spend more time with their loved one with ALS. Since 2022, Live Like Lou has invited scholarship recipients and their families to join them at MLB games where the organization hosts events for Lou Gehrig Day and ALS awareness activity.
It’s not too late to apply for 2024. Faust’s advice to applicants is to keep in mind that their thoughtful responses to the application questions, essays, and letters of recommendation are all that our selection committee (of which I&#8217;m a member) has to go on when reviewing candidates. She recommends that applicants take time to tell the story of how ALS has affected them and their family, and how these funds will make a difference in their educational pursuits.
Faust concludes that Live Like Lou is grateful for the donors that make programs like this possible. To learn more about its scholarships and other programs, please visit the organization&#8217;s website.
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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.

Lou Gehrig’s legacy lives on through ALS college scholarships

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.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

How winter weather brings stress when living with ALS

In the wake of <a href="https://www.als.org/understanding-als/what-is-als">ALS</a> loss, certain touchstones bring comfort every time I think of them. This includes small things like funny photographs, private nicknames, and sentimental gifts. In grief, even a favorite old coffee mug can bring immeasurable joy. I have one additional beloved thing, too: a quotation I discovered early on in my grieving process.
When I read in an online ALS grief group to “be the things you loved most about the people who are gone,” I immediately recognized a glimmer of hope. I realized that losing my husband, Jeff, to ALS did not mean losing all of the things that I loved about him. While it didn’t dissipate my grief, it gave me something concrete to organize around when I was newly bereaved, and still does. Jeff is gone, but the things I loved about him don’t have to be.
This marked a new way of thinking.
These words, the insightful author of which is unknown, have guided me in many ways since Jeff died almost four years ago, an intense 19 months after his <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a>. The pain of losing him, coupled with an intense, exhausting journey in caregiving, left me casting about looking for ways to make sense of what we had gone through, and coming up short. I couldn&#8217;t find any meaning in why he had to endure what he did, and what it had cost him — what it had cost us.
[recommended-reading id=83835]
In the ensuing months and years, thinking about “being the things I miss the most about him” has influenced me so much that I keep a separate task list on my phone to remind me to do, each day, some of the many things I loved about him. This list includes things I admired about and learned from Jeff that influenced me regarding how I want to live and what kind of person I want to be. Some of the entries include: Burn candles at home (safely). Feed the birds. Send thank-you notes. Make guacamole from scratch. (I haven’t learned that one yet but find comfort from knowing that I will.)
<figure id="attachment_89228" aria-describedby="caption-attachment-89228" style="width: 357px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-89228 size-full" src="https://alsnewstoday.com/wp-content/uploads/2024/01/rolling-stones.jpg" alt="A middle-aged couple pose together for a photo in front of the stage at a Rolling Stones concert in Detroit. It appears the concert is at Comerica Park, home of the Detroit Tigers baseball team. " width="357" height="357" data-wp-pid="89228" /><figcaption id="caption-attachment-89228" class="wp-caption-text">Jeff Sarnacki and Juliet Taylor attend a Rolling Stones concert in July 2015, before his ALS diagnosis. Juliet says she has Jeff to thank for her love of the Stones, which always remind her of him. (Courtesy of Juliet Taylor)</figcaption></figure>
Jeff was sweetly and surprisingly domestic and created a beautiful, peaceful home for us, a place full of excellent cooking and warmth and good smells. He cherished the small things: making snowmen, tending to plants, throwing the ball for the dogs. I remember those moments vividly, and they’re woven into the texture of my memories of him. He brought that beauty to our life together, and left me with a blueprint to continue.
This notion of legacy, of leaving something tangible, is heavy on my mind right now as I learned about the loss of a friend to ALS last week. <a href="https://www.usatoday.com/story/sports/mlb/reds/2024/01/08/adam-wilson-cincinnati-reds-fan-and-als-advocate-dies-at-41-mlb-lou-gehrig-day/72157126007/">Adam Wilson</a> and I never met in person, but we corresponded often when he was working to encourage Major League Baseball to adopt an annual <a href="https://lg4day.com/">Lou Gehrig Day</a> each June to raise awareness about the disease and to honor those living with, and those who have died from, ALS.
Together with another friend, <a href="https://www.espn.com/mlb/story/_/id/31546742/the-ballad-bryan-wayne-galentine-how-one-man-dream-led-creation-lou-gehrig-day-mlb">Bryan Galentine,</a> and others, Adam’s efforts to create Lou Gehrig Day were sustained, tireless, and ultimately successful. It was an incredible thing to see it come together week after week, a very heady time in the community as we watched this small team of advocates succeed in building something enduring and meaningful to the <a href="https://alsnewstoday.com/forums">ALS community</a>. 2024 will mark the league’s third annual Lou Gehrig Day, an event now enjoyed by hundreds of thousands of people.
Adam was also a truly gifted <a href="https://www.hearthehope.org/jealous-featuring-adam-f-wilson/">musician</a>, and enthusiastically gave me permission to use one of his original songs to accompany an ALS advocacy video that a group of us had created.
When I think about the attributes and gifts that our community can take from Adam — how we can be the things we loved the most about those who are gone — for me it’s his determination, passion, kindness, and creativity, all things that Adam showed every day, in ample supply, during the brief time that I knew him.
There’s little consolation in loss from ALS. It is currently <a href="https://www.hopkinsmedicine.org/health/conditions-and-diseases/amyotrophic-lateral-sclerosis-als">100% fatal</a>, an unacceptable statistic that so many are working to change through science, medicine, raising awareness, and funding — any means possible. So many of us fervently wish for and work toward a day when ALS is effectively treatable and curable.
In the meantime, I do find consolation in encouraging myself to be the things I loved about the people who are gone — the small things like inside jokes, mannerisms, and habits, and the big things like building a life as beautiful and meaningful as possible, and creating something amazing for others to value and to make a difference in one’s community. It’s through these legacies that the rest of us, if we are open to it, can find meaning and a way forward in loss.
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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 I learn to live from those we’ve lost to ALS

I’m not a big believer in making New Year’s resolutions. There’s something that feels bad about setting a goal that’s lofty — learning a new language is one of my perennial favorites, for example — and then not accomplishing it. Plus, I keep a daily to-do list that includes some small self-improvement items, and I work regularly, and with mixed results, to attain those.
As a <a href="https://www.als.org/navigating-als/for-caregivers">caregiver</a> for my late husband, Jeff, I also came to learn over time (and often the hard way) to be kinder to myself, to show myself some grace in what I could and could not reasonably accomplish. Caring for a loved one with a terminal illness is an act of grace unto itself and while it’s the most meaningful thing I’ve ever done, I found it very hard both physically and emotionally.
For all of these reasons, I haven’t thought about New Year’s resolutions in a very long time. But this year I’ve decided to catalog some specific goals for myself as they relate to <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.
<h3>Build my network of ALS community through volunteering</h3>
Before Jeff was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS,</a> I did not often volunteer my time. I’d occasionally donate blood or participate in an organized activity through work, but volunteering wasn’t part of my daily life. When Jeff became ill, I felt overwhelmed, isolated, and scared, and realized that I needed to connect with other caregivers and families living with ALS. That led me to the then-newly formed <a href="https://www.iamals.org/">I AM ALS</a>, where I have found a true home and the chance to get and give support through building and participating in community events.
One of the most rewarding for me is participating as a speaker or moderator on <a href="https://www.iamals.org/action/request-a-panel/">Tim Lowrey ALS Panels,</a> named for my friend Tim Lowrey, who created them. These events are complimentary speaking panels that our team delivers to colleges and community organizations to help them learn about the disease.
I AM ALS is the group I found, but there are literally dozens of <a href="https://www.youralsguide.com/resource-list.html">organizations</a> both small and large that rely on volunteer time and expertise to thrive. While I did not have time to volunteer much, if at all, while caregiving, I have found that doing so while grieving and healing is deeply meaningful.
[recommended-reading id=36240]
<h3>Strengthen my support for people living with ALS and caregiving</h3>
When Jeff was diagnosed, a few complete strangers reached out to me. They had lost a parent or spouse to ALS, and instinctively understood the shock and bewilderment Jeff and I were feeling. These new friends were a lifeline to me — from calling to check on me or stopping by to bring me a nice-smelling body scrub, to answering my scariest, most personal questions.
Now, more than three years after Jeff’s death, it feels natural to want to do this for others. <a href="https://www.als.org/navigating-als/living-with-als">Living with ALS</a> can be lonely, and I learned firsthand what a difference it makes when someone who understands reaches out with empathy and kindness to help. I am far from alone in this; so many of my friends in the ALS community are those who have lost a spouse, parent, sibling, or best friend and want to help others feel less alone. Volunteer groups, once again, are a valuable way to meet others to <a href="https://www.iamals.org/get-help/">get or give support</a>.
<h3>Raise money for a cure</h3>
I’m terrible at asking for money and would have made a horrible salesperson, although, recalling my teenage years, my parents would surely disagree. However, when it comes to raising money for ALS it’s much easier because it will take many millions of dollars to further the groundbreaking science currently underway to end it.
This year, I signed on to participate in the <a href="https://www.nyrr.org/races/2023/unitedairlinesnychalf/">United Airlines New York Half Marathon</a> to raise money for the <a href="https://www.als.net/">ALS Therapy Development Institute</a>. This was one of the most memorable aspects of my year. I raised a sum higher than I’d endeavored to do before, and met my goal. On a 28-degree morning in March, I joined a team of other participants in New York to traverse 13.1 miles through Brooklyn and Manhattan, ending in Central Park. I’m not a natural runner and I walked nearly the entire course, but I finished the race. Most importantly, our team raised a significant sum for ALS TDI, and it felt great.
I won’t make any other New Year’s resolutions this year. I’ll keep plugging away at my personal growth in areas like building my fitness, learning new skills and growing as a person. But it feels good to have some specific plans to help end ALS, and to support people living with it and their families.
Thank you for reading my column this year. I wish you and your loved ones a peaceful and happy 2024.
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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.

Restarting New Year’s resolutions with 3 goals for the ALS community

A few weeks before Christmas Day in 2018, my late husband, Jeff, and I sat side by side on the edge of our bed, preparing to create the most meaningful Christmas gifts we’d ever given.
Laid out beside us on the bed were four children’s storybooks, each with a Christmas theme and an embedded recording device. I held each book and turned the pages as Jeff’s wavering voice read aloud the verses to &#8220;&#8216;<a href="https://www.poetryfoundation.org/poems/43171/a-visit-from-st-nicholas" rel="nofollow">Twas the Night Before Christmas</a>&#8221; (actually, &#8220;A Visit From St. Nicholas&#8221;) and three other stories, preserving his gently spoken words for future generations. The books were meant for Jeff’s two adult children, and more specifically, for their eventual children.
Weeks earlier, Jeff’s <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> had been confirmed via a second opinion at the <a href="https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/als">Johns Hopkins ALS Clinic</a> in Baltimore. The weeks after his terminal diagnosis were traumatic for both of us as we’d tried to absorb the news and support each other while reeling from shock and sadness. As Christmas approached, though, we were forming a plan for how we wanted to go on with living.
The recorded storybooks were a meaningful and poignant start.
[recommended-reading id=83835]
<h3>A master of Christmas</h3>
As a <a href="https://pubmed.ncbi.nlm.nih.gov/26860749/">heterogeneous disease</a>, no two cases of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> are exactly alike, and all individuals and families experience ALS differently. In our case, the faster-than-anticipated waning of Jeff’s <a href="https://scienceline.org/2020/05/finding-your-voice/">voice</a> was the most devastating <a href="https://alsnewstoday.com/symptoms-of-als/">symptom</a> of his illness. The speed with which his voice had begun to falter had taken us both by surprise. For all I’d read and learned about ALS to that point, somehow this particular symptom seemed grossly unfair.
Our niece Stephanie was aware of our sadness at this development. A mom of two young girls, she suggested to me in a text message shortly after Jeff’s diagnosis the idea of <a href="https://www.amazon.com/s?k=recordable+storybooks&amp;adgrpid=1335907190983589&amp;hvadid=83494438623543&amp;hvbmt=be&amp;hvdev=c&amp;hvlocphy=91172&amp;hvnetw=o&amp;hvqmt=e&amp;hvtargid=kwd-83494540527046%3Aloc-190&amp;hydadcr=22561_13494450&amp;tag=mh0b-20&amp;ref=pd_sl_780cyxv9lp_e" rel="nofollow">recordable storybooks</a>. I instantly loved the thought of preserving his voice for future generations and ordered the books, dozens of which are available online, to give to Jeff’s two adult children as Christmas gifts.
<figure id="attachment_88643" aria-describedby="caption-attachment-88643" style="width: 265px" class="wp-caption alignright"><img loading="lazy" decoding="async" class="wp-image-88643" style="margin-left: 10px;" src="https://alsnewstoday.com/wp-content/uploads/2023/12/als-column-image-christmas-2018-449x800.jpg" alt="A balding man who looks to be in his 60s stands with his arms around two women - his daughter to his right and his wife to his left. The three are standing in front of a giant artificial Christmas tree decked with ornaments and white Christmas lights. They are in a large room in a house, with wooden floors and big, wooden French doors that are open behind them and the tree. " width="265" height="472" data-wp-pid="88643" /><figcaption id="caption-attachment-88643" class="wp-caption-text">Jeff Sarnacki, center, his daughter, Makelle, left, and wife, Juliet Taylor, celebrate Christmas in 2018, shortly after Jeff&#8217;s ALS diagnosis. (Courtesy of Juliet Taylor)</figcaption></figure>
This gift was fittingly sentimental, as Jeff was a master of Christmas, each year revealing a softer side that he often didn’t publicly show. He took great pride in creating a beautiful home for the holidays, setting up a tall artificial tree that we’d always decorate together with meaningful ornaments from his past, my past, and our current life together.
On that Christmas in 2018, he went all out, hanging lights and stockings and other trimmings to make the house cozy, warm, and festive. We were celebrating a small Christmas at our home that year, hosting both of Jeff’s kids and their mom. He and I had traveled for Thanksgiving, and we both wanted to stay home in Maryland to enjoy the holidays at our rented farmhouse in Annapolis, a place we loved and where we’d gotten married just two months earlier.
Everything felt more weighty and special that year. We were keenly aware of the importance of each moment.
We presented the recorded storybooks last, after other gifts had been shared. The room was initially silent as his kids opened their books and Jeff&#8217;s voice, preserved in the pages, filled the room. It was a peaceful and beautiful moment. Stephanie’s suggestion had been wonderful — a home run.
I miss Jeff every day, and on many days, what I find myself missing the most is his voice. Our home is quiet without him. He used to routinely walk around the house singing me a 1970 Bobby Sherman song called “<a href="https://www.youtube.com/watch?v=pErPOB350a8">Julie, Do Ya Love Me</a>.” Together with his brothers, he’d invent nonsense words and use them in daily conversation, making me laugh each time I overheard them. And his voice was resonant and reassuring over long breakfasts at “our” table at a local diner when we lived in Michigan, where we’d linger over black coffee and talk about the future.
It surprises me how much I miss that voice, so personal and individual that it was like a fingerprint. While photographs make it easy to picture his face, it gets harder over time to remember how he sounded. I think, in retrospect, that’s why the storybooks were such a beautiful gesture. We couldn’t have known at the time how important they would be.
I have no regrets about how we lived during Jeff’s time with ALS. We surrounded ourselves with love, family, and friends. We traveled, made memories, established traditions, and embraced every day. If I had it to do over again, though, I’d take more video, record more storybooks, and save more voicemails. I hadn’t appreciated how comforting a voice can be in a loved one’s absence.
<hr />
Note: <a href="https://alsnewstoday.com/">ALS News Today</a> is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or <a href="https://alsnewstoday.com/approved-treatments-for-als/">treatment</a>. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Preserving a loved one’s voice can be the sweetest holiday gift

My late husband, Jeff, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> just before Thanksgiving in 2018. His diagnosis had come swiftly — we’d first heard mention of <a href="https://alsnewstoday.com/what-is-als/">ALS</a> in July and his illness was confirmed in October, backed by a second opinion in November. Because there&#8217;s no definitive test for ALS, for many living with the disease, a diagnosis can take a year or more.
Heading into the holidays that year, we felt many things, none of them festive. We were shocked, reeling, and devastated. We were not yet at the point where we’d developed the resolve with which Jeff, and therefore I, approached his ALS fight. That would come, but in those early weeks, we were bereft and, even together, feeling alone.
We were also living about 500 miles away from most of Jeff’s large family, the Sarnackis; they were in Michigan, and we’d recently moved back to Maryland. We’d kept his family apprised of his concerning <a href="https://alsnewstoday.com/symptoms-of-als/">symptoms</a> and all the things they could possibly mean, but that process was enveloped in sadness after the second opinion at <a href="https://www.hopkinsmedicine.org/neurology-neurosurgery/specialty-areas/als-specialty-care">Johns Hopkins</a>. Once his illness was confirmed, I remember that telling his family this devastating news — especially his adult daughter and son — was the thing he dreaded most.
[recommended-reading id=83835]
<h3>Ready for some joy</h3>
Jeff was one of seven children, born exactly in the middle, a fact that he laughingly said made him the most well-adjusted of the bunch. As adults, everyone was pretty close, sharing holidays and gatherings as geography and growing families would allow. I can’t remember if we’d already decided to go to Michigan that Thanksgiving or not; we’d been so preoccupied. But I do remember the elation with which we headed to see his family that year. We were ready for some joy.
On the journey out, Jeff was more quiet than usual. We’d both been lost in our own thoughts for weeks, and his ALS diagnosis instantly and completely reframed our world and seemingly everything in it. I knew intuitively that reassuring his family and sharing with them the blueprint for how he wanted to approach life going forward was important.
Jeff’s sister Janet hosted Thanksgiving dinner that year, and there were at least two dozen of us gathered, from Jeff’s dad, who was in his 90s, to our youngest great-niece, who was 2. It’s a family tradition to hold hands and pray together before the Thanksgiving meal, and after we did this while standing in a loose circle around Janet’s kitchen, Jeff asked for some time to speak. He acknowledged the difficult diagnosis, which by then he’d shared individually with his loved ones, and then doubled down on his intention to live.
By live, Jeff didn’t mean he was going to physically survive ALS, although that was our fervent hope. What he meant was that for as long as he could, and for as well as he could, he was going to live his life, and he wanted us all to join him. Jeff didn’t want pity or to be handled with kid gloves. He didn’t want to be protected. What he wanted was to experience life fully and joyfully and with abandon. He wanted to embrace each day and for us to do it with him.
I’ll forever remember that scene as one of the defining moments in our nearly two-year experience with ALS. Many memories from those years are seared in my mind; some are traumatic, some are beautiful. That moment in Janet’s kitchen will stay with me forever as a moving moment of courage and grace, two attributes Jeff displayed in abundance during our family’s journey with ALS.
The rest of the evening was joyful. We enjoyed dinner together, told stories, and exchanged barbs on college sports rivalries (the most intense in our family being <a href="https://mgoblue.com/sports/football" rel="nofollow">Michigan vs. Ohio State</a>). Jeff’s niece had made blue bracelets emblazoned with “Sarnacki Strong,” and we all donned one in solidarity. Many of us never took them off again during Jeff’s fight with ALS. The evening set the tone for how his family showed up for us, and for one another, during what could have been the darkest days of his life.
Jeff’s ALS progression was faster than average, and he died at home in May 2020, surrounded by family. But for the life in between, there was laughter, time together, and gratitude.
It’s hard to find anything to be grateful for about ALS. It’s an insidious, cruel disease that robs individuals of their autonomy and cuts short cherished time. But in our case, it could not change the important things: love, commitment, laughter, and family. The first time I truly understood that was during that early Thanksgiving of <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a>.
This holiday season, my fourth without him, I&#8217;m honoring Jeff with thanks and gratitude for the love and lessons he left me.
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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: Thunder Road - Column by Juliet Taylor