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Joe&#039;s Atlas Experimentation Site

<figure id="attachment_84299" aria-describedby="caption-attachment-84299" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84299 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/a0e3eff9-46db-4ffb-af1b-13326598fb59-380x290.jpg" alt="A family of seven poses for a photo with their two dogs. They're all wearing matching black-and-white plaid pajama pants and a black T-shirt with the word &quot;love&quot; printed in white. The father sits in the center in his wheelchair, with his wife, four sons, and daughter gathered around him." width="380" height="290" data-wp-pid="84299" /><figcaption id="caption-attachment-84299" class="wp-caption-text">Our first holiday since my tracheotomy. My wife ordered these shirts while I was in the ICU. Since then, these shirts have become a part of who we are. We now are selling them on our website. Love. (Photos courtesy of Brian Jeansonne)</figcaption></figure>
This is Brian Jeansonne&#8217;s story:
I&#8217;m asked from time to time by others with <a href="https://alsnewstoday.com/what-is-als/">ALS</a>, is the <a href="https://alsnewstoday.com/columns/having-grit-matters-choosing-medical-interventions-als/">trach</a> worth it? The one thing I tell them is that they must know their reason for continuing to live. Because it’s not an easy life.
<figure id="attachment_84297" aria-describedby="caption-attachment-84297" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84297 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/d636c3d0-7c60-4dff-8e2a-b4234acdf901-380x285.jpeg" alt="A father poses outside with his four sons for a photo. They're all wearing matching black shirts with a yellow &quot;Diamond Dogs&quot; logo on the front. The father is sitting in his wheelchair, with his trach visible, while his sons stand in a row behind him." width="380" height="285" data-wp-pid="84297" /><figcaption id="caption-attachment-84297" class="wp-caption-text">The boys hanging out in our awesome neighborhood in New Orleans.</figcaption></figure>
My four boys and I are the <a href="https://linktr.ee/thejeansonne7">Diamond Dogs</a>. They are my reason, in addition to my daughter, Zoe Moon, 11, who will be inducted on her 13th birthday. We get together once a week to talk about our lives. We talk and we listen. We are 14, 16, 17, 18, and 46 years old.
I know that upon my death, my wife, Kris, will be crushed, but she&#8217;ll also be OK, because she&#8217;s Kristy Jeansonne. I have spent the last 22 years of my life with this girl, 20 of those <a href="https://alsnewstoday.com/columns/celebrating-marriage-adapted-various-phases-als/">married</a>. They have been the best 22 years of my life. I would give anything to grow old with her, but if life and Mick Jagger have taught me anything, it’s that “You can’t always get what you want/ But if you try sometimes, you just might find/ You get what you need.”
So, when it was time to decide whether to live the rest of my life on a machine, I counted five reasons. And every time the s*** hits the fan and I think I can’t do it, I whisper to myself, &#8220;Micah, Jonah, Nate, Lucas, Zoe Moon.&#8221; And I keep going.
Our Diamond Dogs song is &#8220;<a href="https://www.youtube.com/watch?v=FdXRbOrsyRY" rel="nofollow">Unconditional I</a>&#8221; by Arcade Fire. This is how we raise our kids.
<blockquote>“A lifetime of skinned knees, 
And heartbreak comes so easy, 
But a life without pain would be boring. 
And if you feel it, it’s fine, 
I give you everything that’s mine, 
I give you my heart and my precious time.”</blockquote>
I remember when we brought Lucas home from the hospital and the older boys were 2, 3, and 4, I thought, &#8220;One day they&#8217;ll all be teenagers.&#8221; Well, that happened quickly. Now I’m done raising my eldest and I’m still raising the others. But I’m not done imparting myself to any of them. If you think Kris and I are a force to be reckoned with, just wait to see who these five will be.
<figure id="attachment_84300" aria-describedby="caption-attachment-84300" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84300 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/26d72bf0-c8e7-4216-bee2-deadc3030f56-380x285.jpeg" alt="A father poses outside on a street with his four sons. He's sitting in a wheelchair, and they're standing and spaced out behind him." width="380" height="285" data-wp-pid="84300" /><figcaption id="caption-attachment-84300" class="wp-caption-text">I&#8217;ve always asked my family to take photos that represent an album cover. They don’t even argue anymore; it&#8217;s expected. We probably have thousands of these poses.</figcaption></figure>
One of the absolute greatest things to come out of ALS is the quality of my <a href="https://alsnewstoday.com/columns/5-steps-to-make-your-relationships-stronger-than-als/">relationships</a>, particularly with my kids. I always wondered how we were going to navigate having a senior, junior, sophomore, and eighth grade boy at the same time. I wasn’t as worried about Zoe Moon being in fifth grade (though I should&#8217;ve had this on my radar, as little girls are a complete mystery to me). But the bond between me and my boys is stronger than anything I could have ever imagined. Somehow ALS allowed us the opportunity to bypass the rebellious phase, and instead enter into a sacred relationship of mutual respect and <a href="https://alsnewstoday.com/columns/how-love-conquered-fear-after-husbands-als-diagnosis/">love</a> during their teenage years. We don’t deal with the typical teenage boy fighting against everything we say. It’s crazy and it&#8217;s beautiful.
We are the Diamond Dogs. Woof.
Love.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

Family, mutual respect, and love keep me pushing forward with ALS

<figure id="attachment_84597" aria-describedby="caption-attachment-84597" style="width: 352px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84597 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Mary-Alice-with-husband-Holt-352x380.jpg" alt="A couple poses for a photo inside their home. The woman has short blond hair and glasses and is wearing a black top and necklace. The man has graying hair and a mustache, and he's wearing a long-sleeved white shirt and a red vest. " width="352" height="380" data-wp-pid="84597" /><figcaption id="caption-attachment-84597" class="wp-caption-text">Mary Alice with her husband, Holt. (Photo courtesy of Mary Alice Poling)</figcaption></figure>
This is Mary Alice Poling&#8217;s story:
My name is Mary Alice Poling and my son, Seth, who is 37 years old, has <a href="https://alsnewstoday.com/what-is-als/">ALS</a>. He has been <a href="https://alsnewstoday.com/living-with-als-2/">living with ALS</a> for nine years. If I&#8217;m truthful, I’m mad — not at God, but at the universe. How could this happen to my loving, kind, athletic son?
I remember the moment Seth called me to tell me about his <a href="https://alsnewstoday.com/als-diagnosis/">diagnosis</a>. I was in a sewing class with my sister and my best friend. I excused myself and went to the bathroom to ugly cry. When I returned to the sewing class, I immediately asked my friend for her prayers. I had a small thought that life was never going to be the same. But I didn’t realize how much it would change.
I quickly traded a retirement lifestyle of vacationing in warm destinations to being available to help care for Seth. I offered my time as a <a href="https://alsnewstoday.com/columns/challenges-hiring-nighttime-als-caregivers/">backup caregiver</a> when none were available. My active son went from a life with free mobility to only being able to <a href="https://alsnewstoday.com/columns/speech-generating-devices-let-eyes-do-walking/">move his eyes</a>. None of my friends understand the care he requires.
<figure id="attachment_84598" aria-describedby="caption-attachment-84598" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84598 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Mary-Alice-with-daughter-in-law-Erika-and-son-Seth-at-a-baked-steak-fundraiser-for-Seth-380x253.jpg" alt="A woman wearing an apron stands between her son and his wife in front of a table at a fundraiser. They're all wearing gray shirts with a blue &quot;Team Seth&quot; logo." width="380" height="253" data-wp-pid="84598" /><figcaption id="caption-attachment-84598" class="wp-caption-text">Mary Alice, center, with daughter-in-law Erika and son Seth at a baked steak fundraiser for Seth. (Photo courtesy of Mary Alice Poling)</figcaption></figure>
ALS robs a person of their <a href="https://alsnewstoday.com/columns/why-dependency-is-reality-life-with-als/">independence</a>. It has taken more than that from my son. He no longer has his infectious smile or his ornery sense of humor. ALS has sucked the joy from his life.
As his mom, this has been the hardest thing to witness throughout the progression of his disease. I can’t remind him that he isn’t acting like his former self.
The silver lining I cling to is that, thanks to Seth&#8217;s battle with ALS, my family, especially his two sons, have gained an awareness and compassion for anyone struggling with disabilities. Our family is raising kind and compassionate <a href="https://alsnewstoday.com/columns/parenting-children-rare-diseases-family-support/">young people</a>.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

Thanks to ALS, our family is raising kind and compassionate children

<figure id="attachment_84315" aria-describedby="caption-attachment-84315" style="width: 285px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84315 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Britley-with-Brian-Jeansonne-285x380.png" alt="A smiling woman with long, blond hair and sunglasses perched on the top of her head leans forward with her left arm around a bald man with aa goatee, who is wearing glasses and in a power wheelchair. He is wearing all black, tattoos are partially visible on his right arm, and he has a tracheostomy. He also is smiling. Both people are looking at the camera. They appear to be outdoors somewhere, perhaps a football field or track. " width="285" height="380" data-wp-pid="84315" /><figcaption id="caption-attachment-84315" class="wp-caption-text">Britley Wells and Brian Jeansonne. (Photo courtesy of Britley Wells)</figcaption></figure>
This is Britley Wells&#8217; story:
Hi there! My name is Britley Wells, and I am a trauma intensive care registered nurse at <a href="https://www.lcmchealth.org/university-medical-center-new-orleans/">University Medical Center New Orleans</a>. In early January, I had the privilege of meeting the <a href="https://www.thejeansonne7.com/">Jeansonne family</a> through a colleague and good friend, Mary Kate Karam. Through Mary Kate’s social media posts and shared pictures and videos, I learned of her new role as personal caregiver for Brian Jeansonne, a 46-year-old father of five and loving husband.
Brian was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in April 2020. I was immediately drawn to Brian’s story and felt a sudden urgency to learn more about him and his family. The moment I entered the Jeansonne home, I felt an instant connection with Brian and his precious family. I knew I belonged in his presence, helping him and his beautiful, strong, resilient family of seven. I knew in that moment that Brian would change my life and that I would do anything to care for this man and strive to meet all of his needs so that he and his family could adjust to living the new life that destiny had in store for them.
<figure id="attachment_84316" aria-describedby="caption-attachment-84316" style="width: 285px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84316 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Britley-Brian-and-Brians-daughter-285x380.png" alt="Three people pose outside on a short-trimmed lawn in front of some bushes. One is a young girl, another is a man in a wheelchair and covered by a blanket, and the third is a woman wearing a hat and dark sunglasses. The girl is wearing a hoodie covering most of her head. " width="285" height="380" data-wp-pid="84316" /><figcaption id="caption-attachment-84316" class="wp-caption-text">From left, Zoe and Brian Jeansonne and Britley Wells. (Photo courtesy of Britley Wells)</figcaption></figure>
After our initial meeting, and after learning more about Brian, I discovered that Brian&#8217;s wife, Kristy, and five children had been providing full-time care to Brian since his diagnosis. When Brian&#8217;s disease progressed and he required a tracheostomy and ventilator to support and sustain his life, it was time to change the dynamic of his caregiving.
Mary Kate, Kristy, and I began a trial-and-error process of creating a new norm for Brian’s lifestyle. We brainstormed about ways in which we could normalize his life to reestablish the prior family dynamics between him, his wife, and their children. Brian, being the patient and kind man that he is, gracefully adapted to his new lifestyle and caregiving routine with the most positive and loving attitude one could imagine.
Once Brian became comfortable with his new lifestyle and caregivers, we began venturing out and creating a schedule in which Brian and Kristy could be in two separate places supporting their children. We even began taking solo caregiver trips in which we take Brain on walks to the local coffee shop where he used to go on daily runs.
Although our routine is constantly evolving and changing, watching Brian choose to live and love every day fills my soul with happiness and pride. Watching his kids come home and interact with their dad in a way they were unable to do before, and watching Kristy be the amazing mother and wife while trusting us completely with her husband means everything to me.
I have a love-hate relationship with ALS. I wish it did not exist. However, I would not trade a day that I get to spend taking care of Brian and being a part of his and Kristy’s journey. The Jeansonne 7, as the family is known, is my second family. I never would have met the Jeansonne 7 if not for ALS, which changed my life in ways I did not know I needed.
I love my job, and I love this family. Life is beautiful chaos, and boy am I glad I ended up here.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

As an ALS caregiver, I learned the true meaning of strength

<figure id="attachment_84308" aria-describedby="caption-attachment-84308" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84308 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Jazz-Fest-2023-watching-Mumford-and-Sons-Trombone-Shorty-and-John-Batiste.-Incredibly-hot-but-incredibly-fun-380x285.jpg" alt="A woman and a man face the camera at the foreground of a crowd, with a blue sky overhead. She wears glasses and a tank top with rows of blue, white, and other colors. He's bearded and using a trach and a wheelchair, wearing a black T-shirt and a black, wide-brim hat." width="380" height="285" data-wp-pid="84308" /><figcaption id="caption-attachment-84308" class="wp-caption-text">Mary Kate Karam and Brian Jeansonne at Jazz Fest 2023, watching Mumford &amp; Sons, Trombone Shorty, and John Batiste. Incredibly hot, but incredibly fun! (Photo courtesy of Mary Kate Karam)</figcaption></figure>
This is Mary Kate Karam&#8217;s story:
Brian Jeansonne, a father of five, was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in 2020. In October he was in the intensive care unit for 28 days. That&#8217;s where I worked as a nurse, and that&#8217;s when I was on my eighth and final contracted month. On just one day out of those 28, I was his nurse. One day. One 12-hour shift.
It changed my life forever.
<figure id="attachment_84309" aria-describedby="caption-attachment-84309" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84309 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/MK-with-the-J7-Brians-Parents-at-City-Park-their-favorite-place-to-spend-time-together-as-a-family-for-the-first-time-since-Brian-was-trached-and-in-the-ICU.-380x285.jpg" alt="This picture shows a grinning woman at the left foreground in front of a group several feet behind her, with a brown dog between them. All are outdoors under an open structure with a roof and a brick and concrete floor. The woman has brown hair tied back and wears a gray, open-necked shirt. The group of nine behind her includes a man seated at center. He's in a wheelchair, has a tracheostomy tube, and is covered with a green blanket. " width="380" height="285" data-wp-pid="84309" /><figcaption id="caption-attachment-84309" class="wp-caption-text">Mary Kate with Brian, his wife, his kids, and Brian&#8217;s parents at City Park in New Orleans — their favorite place to spend time together — for the first time since he was in intensive care. (Photo by Mary Kate Karam)</figcaption></figure>
I met Brian and his wife, Kristy, on Halloween. She&#8217;d just come from getting all the five kids off to school for the day, and we clicked immediately. We had a whirlwind of a day learning about the new ventilator he’d be on when he went home, among a ton of other things. But somehow during the chaos of the day, I went from meeting Brian and Kristy to being friends with Brian and Kristy. They tend to have that effect on people.
That day Kristy mentioned that she&#8217;d now have to look for help with Brian&#8217;s care. Up until then, Kristy and the kids had done it all. They’re rock stars.
She asked if I’d be interested in joining his family team, which they call the <a href="https://www.facebook.com/thejeansonne7/">Jeansonne 7</a>, as a <a href="https://alsnewstoday.com/columns/tips-als-caregivers-outpost-respite-care/">caregiver</a>. My sarcastic answer was “Duh.” It couldn’t have come at a better time, as I was nearing the end of my contract and already planning to take a break from working full time at the hospital. So I gave her my number, and that was that.
A couple of weeks later, after a brief stay in a long-term acute care facility while they readied Brian&#8217;s house in New Orleans, he finally made it home. I started working as Brian’s first official <a href="https://alsnewstoday.com/what-is-als/">ALS</a> caregiver the next day.
Since then we’ve been learning by trial and error about the family&#8217;s new “norm,” and Brian’s handled the chaos, changes, new routines, and my own learning curve so beautifully. He&#8217;s never angry, never unkind — always understanding, always gracious, always laughing at the struggle rather than being angry at it.
<figure id="attachment_84310" aria-describedby="caption-attachment-84310" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84310 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/At-CCs-Coffee-House-Brian-spent-every-day-here-before-his-diagnosis.-We-like-to-enjoy-days-here-visiting-and-giving-Brian-little-tastes-of-his-favorite-dark-roast-coffee.-380x285.jpg" alt="A woman is in the foreground left while behind her, two young teens flank a man in a wheelchair using a trach. They all seem to be on an outdoor patio with chairs, with a pinkish-orange wall behind them. The woman wears sunglasses and is in a brown shirt." width="380" height="285" data-wp-pid="84310" /><figcaption id="caption-attachment-84310" class="wp-caption-text">Mary Kate, Brian, and two of his children at a CC’s Coffee House, where he regularly spent time before his diagnosis. (Photo by Mary Kate Karam)</figcaption></figure>
We’ve spent days together talking — well, me talking and him listening, then responding with the most wise, thought-provoking, beautiful responses. He uses an eye-gaze device on his computer for that; he recorded his voice before he lost it, so his communications can still use his voice. We’ve spent days together crying. Or thinking. Or brainstorming. But mostly laughing.
We’ve taken a family road trip to Chattanooga, Tennessee. We’ve been to City Park for the day. We’ve been to his favorite coffee spot, CC&#8217;s Coffee House, down the road. We’ve been to the emergency room for emergency exchanges of his tracheostomy tube. We’ve been to the dermatologist for skin cancer removal.
Through all these things, the good and the bad, I’ve watched Brian live his life to the absolute fullest, loving people and changing them for the better everywhere he goes.
I&#8217;ll forever be thankful for Oct. 31, 2022, for bringing me the Jeansonne 7. I look forward to all the journeys ahead for us and invite anyone/everyone to <a href="https://www.thejeansonne7.com/">join Brian</a> on this beautiful, crazy, difficult thing called life. I promise you’ll be better for it. (And get some good laughs out of his posts, too.)
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

A patient’s reminder to find joy even in the toughest of times

<figure id="attachment_84106" aria-describedby="caption-attachment-84106" style="width: 271px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84106 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Jodi-headshot-271x380.jpg" alt="Jodi O'Donnell-Ames" width="271" height="380" data-wp-pid="84106" /><figcaption id="caption-attachment-84106" class="wp-caption-text">Jodi O&#8217;Donnell-Ames founded Hope Loves Company after losing her husband to ALS. (Courtesy of Jodi O&#8217;Donnell-Ames)</figcaption></figure>
This is Jodi O&#8217;Donnell-Ames&#8217; story:
The term <a href="https://alsnewstoday.com/what-is-als/">amyotrophic lateral sclerosis</a> (ALS) was not a part of my vocabulary until May 1995. That&#8217;s when my husband, Kevin O&#8217;Donnell, was diagnosed with the disease at age 30. It was Memorial Day weekend and our world was turned upside down when those three letters were said to us. We drove home in tears and disbelief and had no idea how to share the news with our family, our friends, and our daughter, who was still a toddler.
Kevin and I began sharing our voices with the ALS community. We spoke before the U.S. Food and Drug Administration for the approval of the first ALS drug, <a href="https://alsnewstoday.com/rilutek-riluzole-for-als/">riluzole</a>, with Alina in our arms. The therapy was approved and our picture was featured in its marketing campaign. We also advocated for a change in the Medicare waiting period from 24 months to five months, which was also approved. Our story and involvement in that monumental decision is  preserved in the <a href="https://www.govinfo.gov/content/pkg/CREC-2000-12-15/pdf/CREC-2000-12-15-pt1-PgS11821-2.pdf#page=1">Congressional Record</a>.
Kevin battled ALS for five and a half years. In that time, I learned how to change a trach, operate a Hoyer lift, provide range of motion help, and survive on no sleep. Kevin proved to be courageous, strong, funny, and caring, but in February 2001 he lost his battle and we were left with no idea how to handle it.
<figure id="attachment_84107" aria-describedby="caption-attachment-84107" style="width: 253px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84107 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/Jodi-wearing-a-Hope-Loves-Company-hoodie-1-253x380.jpg" alt="Jodi O'Donnell-Ames" width="253" height="380" data-wp-pid="84107" /><figcaption id="caption-attachment-84107" class="wp-caption-text">Jodi O&#8217;Donnell-Ames founded Hope Loves Company to provide educational and emotional support to children and young adults who have a loved one who&#8217;s battling ALS. (Courtesy of Jodi O&#8217;Donnell-Ames)</figcaption></figure>
I got a job as the director of communications for the <a href="https://www.alshf.org/">ALS Hope Foundation</a> in Philadelphia and met Benton Ames, and his children, Nora and Adam. They&#8217;d also lost someone they loved to ALS. We married two years later and, in the midst of raising three children who&#8217;d lost a parent to ALS, the idea for <a href="https://www.hopelovescompany.com/">Hope Loves Company</a> (HLC) was born.
Hope Loves Company (HLC) is a 501c(3) nonprofit the mission of which is to provide educational and emotional support to children and young adults who&#8217;ve had or have a loved one battling ALS. We are celebrating its 10th anniversary!
 The organization offers numerous programs, all free of charge to families affected by ALS.
Camp HLC is a weekend overnight retreat for children and young adults. It&#8217;s an opportunity to have fun, participate in team-building exercises and meet other children. We also provide art and music therapy, healing circles facilitated by grief counselors, and opportunities for the children to open up in a comfortable, informal environment. Campers have fun and gain valuable coping techniques to face their continued challenges. The camp takes place in six states — New Jersey, Massachusetts, Indiana, Florida, Illinois, and California. We also offer Virtual Camp HLC.
Other offerings include: Hugs of Hope care packages, scholarships, ALS children&#8217;s books, online support sessions called HLC hangouts, and more. We are proud of the work we have accomplished in 10 years. To learn more, visit our website or call 609-730-1144.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

To families affected by ALS, Hope Loves Company offers hope, support

<figure id="attachment_84049" aria-describedby="caption-attachment-84049" style="width: 285px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84049 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/John-with-wife-Judy-and-sister-Irene-in-Vero-Beach-FL-March-2020-285x380.jpg" alt="An older man is picture sitting in the foreground with a blue baseball cap, sunglasses, and a pair of binoculars around his neck. He has his hands on his knees. Behind him are two older women, one wearing a large sun hat and sunglasses, the other a blue baseball cap and sunglasses. Both have their hands on what appears to be the back of the man's wheelchair. They are outdoors in front of a large pedestrian bridge that disappears between rows of trees into the horizon." width="285" height="380" data-wp-pid="84049" /><figcaption id="caption-attachment-84049" class="wp-caption-text">John Russell, his wife, Judy, left, and sister, Irene, in Vero Beach, Florida, in March 2020. (Photo courtesy of John Russel)</figcaption></figure>
This is John Russell&#8217;s story:
I am one of the more fortunate people who have been diagnosed with ALS. I noticed <a href="https://alsnewstoday.com/symptoms-of-als/">difficulties with gait and balance</a> in 2012, and two years later, I was diagnosed and given the typical prognosis of one to five years to live. While this prognosis — which sometimes is two to five years — is accurate for about <a href="https://alsnewstoday.com/what-is-als/">80% of patients</a>, 20% live longer, and 10% live 10 years or more. I&#8217;m at nine years so far.
I’m also fortunate to have been 69 when I was diagnosed. So many people are diagnosed at an age when they are working and supporting their families.
I was retired and living happily in a nice home on 20 acres in Beekmantown, New York, near Lake Champlain on Point Au Roche. I kept horses and enjoyed hunting, fishing, hiking, skiing in the winter, and riding my &#8217;97 Harley Road King. I was an active member of the fire department.
My wife, Judy, had been dealing with <a href="https://parkinsonsnewstoday.com/">Parkinson’s disease</a> and was pretty dependent on me. I tried to carry on for two years, but had to give up in 2016. I watched as most of what we had was sold, auctioned, or given away. We moved to Lake Forest Senior Living Community in Plattsburgh, where we currently reside. Although it’s not the life I had, we are getting by well enough, considering the circumstances, and we plan to keep on going one day at a time.
<figure id="attachment_84052" aria-describedby="caption-attachment-84052" style="width: 336px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84052 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/05/John-with-sister-Irene-on-the-Saranac-River-walking-trail-2022-336x380.jpg" alt="A man and a woman stand next to each other underneath some type of raised platform or other structure on an outdoor walking trail. Both sun and shadows are cast across the two. The man is wearing a purple baseball cap, sunglasses, and and a red jacket, the woman, a blue baseball cap, blue shirt, and sunglasses. " width="336" height="380" data-wp-pid="84052" /><figcaption id="caption-attachment-84052" class="wp-caption-text">John and his sister, Irene, on the Saranac River walking trail in Plattsburgh, New York, in 2022. (Photo courtesy of John Russel)</figcaption></figure>
When we knew what we were dealing with, we decided not to spend whatever time we had trying for some kind of elusive medical intervention or brooding about our misfortune. Instead, we decided to live each day as well as our bodies would allow. We toured Alaska with our daughter and grandson and managed to spend part of the next five winters in Florida.
I discovered that I had amazing friends, both old and new, who were enthusiastic about anything I wanted to try and willing to do whatever it took to make it happen. During those earlier years, I got to explore new territory by canoe and horseback. I continued to be invited on hunting and fishing trips, even though I knew everyone would have had it easier without me.
Our friends have never ceased to keep us with them. We are invited to anything they think we can handle. We always do whatever it takes to show up and are always happy we did.
<figure id="attachment_84051" aria-describedby="caption-attachment-84051" style="width: 395px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-84051" src="https://alsnewstoday.com/wp-content/uploads/2023/05/John-with-wife-Judy-and-grandson-Jack-on-a-cruise-in-Alaska-2016-1-800x600.jpg" alt="An older man and woman stand on the deck of a ship, with a young boy between them. In the background is majestic Alaskan scenery and water. The man is supported by two mobility aids. " width="395" height="296" data-wp-pid="84051" /><figcaption id="caption-attachment-84051" class="wp-caption-text">John his wife, Judy, and their grandson, Jack, take an Alaskan cruise in 2016. (Photo courtesy of John Russell)</figcaption></figure>
Unfortunately, disease progression, though slow for us, is still relentless. Over the past two years, I have lost most of my speech. I am a very social person, so struggling to converse is hard.
To summarize, I would say that I am satisfied with my response to ALS. I know now that I have been fortunate to have slow progression, but even if it had been otherwise, I would feel I had used my time well. I was told by a friend to just “keep on keepin’ on.&#8221; I think that was good advice.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

Living with ALS has brought many changes, but we ‘keep on keepin’ on’

<figure id="attachment_83874" aria-describedby="caption-attachment-83874" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83874 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Image-3-380x380.jpeg" alt="" width="380" height="380" data-wp-pid="83874" /><figcaption id="caption-attachment-83874" class="wp-caption-text">Photos courtesy of Sarah Nauser.</figcaption></figure>
This is Sarah Nauser&#8217;s story:
My name is Sarah Nauser and I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in May 2018, at age 29.
I grew up a huge Kansas City Royals baseball fan. As a teenager, after softball practice, my best friend and I would head to “the K,” Kauffman Stadium, to catch a game. Some of my most precious memories are at the K, with the Royals. I refer to it as my happy place.
<figure id="attachment_83873" aria-describedby="caption-attachment-83873" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="size-medium wp-image-83873" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Sarah-with-Salvador-Perez-and-George-Brett-380x254.jpeg" alt="" width="380" height="254" data-wp-pid="83873" /><figcaption id="caption-attachment-83873" class="wp-caption-text">Sarah with Salvador Perez and George Brett.</figcaption></figure>
At 21, I began my career as a police officer. At 24, I was competing in bodybuilding competitions. By the age of 28, my legs were becoming so weak it was <a href="https://alsnewstoday.com/symptoms-of-als/#Muscular_symptoms">difficult to walk up stairs</a>.
After the diagnosis, I knew I&#8217;d soon have no choice but to hang up the badge, gun, and uniform — not something I was ready to come to terms with. My job was my passion and purpose in life.
But I was fortunate enough to live out my dream. Since I was a teenager in the stands at the K, I&#8217;d wanted to be the police officer working in the Royals dugout.
My last day wearing the uniform, my two passions collided: I was assigned as the officer in the Royals dugout.
Since then, the Royals have treated me like family, supporting me year after year.
But on that special night, I had the opportunity to meet a childhood hero, George Brett. This chance encounter became a friendship beyond my wildest dreams.
George promised me that night he&#8217;d be by my side to support me while I battled ALS. Five years later, George has kept his promise. He&#8217;s always there for me, whether we&#8217;re sitting at the Royals&#8217; stadium soaking in a baseball game together or he and his team are winning my charity golf tournament each year.
<a href="https://alsnewstoday.com/living-with-als-2/">ALS has changed life drastically</a> through the years — I now must <a href="https://alsnewstoday.com/aids-and-adaptations/">use a wheelchair</a> and a <a href="https://alsnewstoday.com/ventilation-2/">ventilator</a>. I was forced to retire from the profession I loved and believed I&#8217;d be doing for 30 years or more.
But I&#8217;ve found a new purpose: being a voice and advocate for all ALS patients. Life doesn’t always go the way we envision but that doesn’t mean it can’t be awesome. I realize every day is a gift and I will make the most of whatever time I have.
<figure id="attachment_83875" aria-describedby="caption-attachment-83875" style="width: 313px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83875 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Sarah-with-Reggie-Sanders-George-Brett-and-Mike-Sweeney-313x380.jpeg" alt="" width="313" height="380" data-wp-pid="83875" /><figcaption id="caption-attachment-83875" class="wp-caption-text">Sarah with Reggie Sanders, George Brett, and Mike Sweeney.</figcaption></figure>
I still attend games at my happy place, with my heroes who now refer to me as their hero. The players frequently message me to ask how I&#8217;m doing, and wear my logo T-shirts to show their support.
Despite all odds, my childhood dreams have come true.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

Living well with ALS helps patient become a hero to her heroes

<figure id="attachment_83821" aria-describedby="caption-attachment-83821" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83821 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Copy-of-32087070_10156470511907048_5747078155181490176_n-380x254.jpg" alt="" width="380" height="254" data-wp-pid="83821" /><figcaption id="caption-attachment-83821" class="wp-caption-text">Tony Pripusich  and his daughter, Sabrina Johnson. (Photo courtesy of Sabrina Johnson)</figcaption></figure>
This is Sabrina Johnson&#8217;s story:
As a little girl, I always envisioned life as a mom. I grew up babysitting, enjoyed caring for younger cousins at family parties, and felt as if looking out for others just came naturally. Wanting to help others succeed and feel safe was a second language to me.
When I turned 5, all I wanted for a present was a Barbie teacher doll, so no one was surprised when I decided to go to college to study elementary education.
<figure id="attachment_83822" aria-describedby="caption-attachment-83822" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="size-medium wp-image-83822" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Copy-of-17-Copy-380x380.jpg" alt="" width="380" height="380" data-wp-pid="83822" /><figcaption id="caption-attachment-83822" class="wp-caption-text">A young Sabrina and Tony. (Photo courtesy of Sabrina Johnson)</figcaption></figure>
Being a daddy’s girl was my third language. Our mutual sarcasm and stubbornness, his joy of cooking, and my joy of filling him in around the kitchen table about the latest drama worked well.
He was brought into this world to be a papa. Don&#8217;t get me wrong — he was a fantastic dad (or &#8220;Ton,&#8221; as you will often hear me refer to him), but he was an even better papa.
My dad had my brother and me when he was older (or so I always thought when I was younger), and I always pictured spending the summers in my childhood pool while visiting him when he was retired and trying to stay late enough for him to make us dinner so that I wouldn&#8217;t have to go home and cook.
I envisioned watching my children nap on the couch with Ton as he pretended not to be sleeping while I was able to catch up on the latest reality TV show he and I were binge-watching together.
But three little letters changed that. One day, our lives changed forever, and the future I had dreamed of disappeared right before my eyes.
“I am sorry, Tony, but you have <a href="https://alsnewstoday.com/what-is-als/">ALS</a>.”
A man who struggled to be heard by doctors for almost two years as he pleaded for someone to take him seriously that his body was failing was finally heard.
An <a href="https://alsnewstoday.com/als-diagnosis/">ALS diagnosis</a> comes with emotions that run from the highest to the lowest, all in the blink of an eye. While you finally feel validated in your struggles, you are now faced with a disease that forces you to wonder how much time you have left to live.
The future I envisioned as a little girl and the summers spent in my childhood home would no longer be pool visits, but were now trips to the doctor&#8217;s office.
<figure id="attachment_83823" aria-describedby="caption-attachment-83823" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83823 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Copy-of-12-380x285.jpg" alt="" width="380" height="285" data-wp-pid="83823" /><figcaption id="caption-attachment-83823" class="wp-caption-text">Tony and Sabrina&#8217;s oldest son, Theodore. (Photo courtesy of Sabrina Johnson)</figcaption></figure>
In the blink of an eye, three little letters — ALS — took the future I had once envisioned and erased everything I once knew could be possible.
ALS ultimately took Ton less than two years after his diagnosis. I often wonder what life would be like today if ALS did not come into our lives.
I will keep fighting in hopes that one day, a little girl’s future can remain just as she had imagined it, even after an ALS diagnosis.
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

My dad’s ALS diagnosis changed the future I envisioned as a little girl

<figure id="attachment_83814" aria-describedby="caption-attachment-83814" style="width: 400px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83814" src="https://alsnewstoday.com/wp-content/uploads/2023/04/Photo-97-380x254.jpg" alt="A family portrait taken outdoors, with trees and a body of water in the background. Pictured are two young boys and a husband and wife. The husband is in a power wheelchair. It is warm out, as all of the boys are wearing shorts." width="400" height="267" data-wp-pid="83814" /><figcaption id="caption-attachment-83814" class="wp-caption-text">The Poling family. From left, Liam, Erika, Bayler, and Seth. (Photos courtesy of Seth Poling)</figcaption></figure>
This is Seth Poling&#8217;s story:
Hello, my name is Seth Poling, and I&#8217;m a 36-year-old husband to my beautiful wife, Erika, and a father of two sons, Liam and Bayler. I live in Morgantown, West Virginia. I grew up in Buckhannon. I was <a href="https://alsnewstoday.com/als-diagnosis/">diagnosed with ALS</a> in 2017, at 31 years old.
<a href="https://alsnewstoday.com/what-is-als/">ALS</a> is currently 100% fatal, with an <a href="https://www.als.org/understanding-als">average life expectancy</a> of only two to five years after diagnosis, although some people live many years longer. I am an ALS warrior, advocate, and the founder of the <a href="https://sites.google.com/thesethproject.org/project/home">S.E.T.H. Project</a>, a nonprofit organization geared toward ending ALS through education and advocacy. The most common question I&#8217;m asked is: &#8220;Does ALS hurt?&#8221;
Here is my perspective: The process of nerve death doesn&#8217;t hurt, but the <a href="https://alsnewstoday.com/symptoms-of-als/">loss of muscle function and mobility</a> can lead to discomfort and pain in various areas throughout the body. As <a href="https://alsnewstoday.com/stages-of-als/">ALS progresses</a>, pain and discomfort become more prevalent and can affect individuals differently.
My first symptom was twitching in my right tricep, which was more annoying than painful. However, as the disease spread down my arms and into my hands, I began to experience severe cramps and discomfort. I felt as if I had written &#8220;Moby-Dick&#8221; by hand, and my forearms and hands would severely cramp due to muscle atrophy. The sensation was uncomfortable, and I also experienced cramps in the meaty part of my thumb.
<figure id="attachment_83815" aria-describedby="caption-attachment-83815" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83815 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/304026121_1243503589524134_3273658048265716438_n-380x285.jpg" alt="A husband and wife and two sons pose in the end zone of a football field. All are dressed in the blue colors of their team. The husband is in a wheelchair while the mother holds one of the young boys upright." width="380" height="285" data-wp-pid="83815" /><figcaption id="caption-attachment-83815" class="wp-caption-text">From left, Liam, Seth, Erika, and Bayler take in a game.</figcaption></figure>
One of the most uncomfortable symptoms I&#8217;ve experienced with ALS was severe cramps under my chin, down my throat. The discomfort was so intense that I would vomit, and it felt like a knife stabbing me in the throat. Clearing my throat didn&#8217;t help. The only way to soothe the discomfort was to vomit.
While ALS ravaged my upper body, my legs remained untouched until late 2017. I noticed a consistent cramp in my right calf, and my balance became a concern. I experienced 22 falls in or around my house over the next three years, resulting in two broken bones and a grade 3 concussion.
The falls were unpredictable and often happened in unexpected situations, such as while carrying my newborn son upstairs or sneezing in the bathroom. As a new father, losing muscle function and mobility made caring for my child extremely difficult, and I had to rely on my wife and family for support.
<figure id="attachment_83816" aria-describedby="caption-attachment-83816" style="width: 380px" class="wp-caption aligncenter"><img loading="lazy" decoding="async" class="wp-image-83816 size-medium" src="https://alsnewstoday.com/wp-content/uploads/2023/04/IMG_0441-380x253.jpg" alt="A wedding portrait of a bride and groom that looks to be taken on a golf course. " width="380" height="253" data-wp-pid="83816" /><figcaption id="caption-attachment-83816" class="wp-caption-text">One of Seth and Erika&#8217;s wedding photos.</figcaption></figure>
ALS can cause anxiety, panic attacks, constipation, pressure sores, and mental degeneration resembling <a href="https://alzheimersnewstoday.com/">Alzheimer&#8217;s disease</a>. Physical pain and the combination of symptoms can manifest in various forms. Pain is subjective, but everyone knows a tummy ache hurts.
<a href="https://alsnewstoday.com/living-with-als-2/">Living with ALS</a> is challenging, and while the disease doesn&#8217;t cause pain, it can lead to discomfort and pain in various areas of the body. The symptoms and effects of ALS affect everyone differently, and it&#8217;s crucial to have a support system and medical care to manage the disease&#8217;s progression. #EndALS
In recognition of ALS Awareness Month in May, the ALS Community Spotlight campaign features a series of stories highlighting the real-life experiences of people affected by ALS, written in their own words. Follow us on <a href="https://www.facebook.com/alsnewstoday">Facebook</a> and <a href="https://www.instagram.com/alsnewstoday/">Instagram</a> for more stories like this, using the hashtag #ALSSpotlight, or read the full series.

Category: Spotlight