Kick Ass ALS 💜
Thank you for helping us fight for Jeanette
We'll do our best to share updates about Jeanette here — from care milestones and challenges to moments of joy and encouragement. Whether you’re family, a close friend, or someone following her story, thank you for being part of this journey with us. Your love, prayers, and support continue to mean so much.
When ALS Equipment Fails
May 26 2026
In a bit of stressful irony, I had just taken photos for a post about how important equipment is for people with ALS when, less than an hour later, Jeanette’s oxygen machine started beeping and flashing warning lights.
A little background: the “oxygen machine” is actually an oxygen concentrator that takes in regular room air, filters out much of the nitrogen and delivers concentrated oxygen. Not everyone with ALS will need this machine, but some do as breathing becomes more challenging. For some, a noninvasive ventilator (NIV) is enough to help move air in and out of the body, but for others, additional oxygen is needed to maintain safe oxygen levels.
Jeanette is one of those people. She receives ongoing oxygen through her NIV, or through a traditional cannula when she eats.
This weekend, Jeanette was finishing eating when we heard a periodic beep: the concentrator was failing. We tried the usual steps to help jump-start it (off/on, clean the filter, etc), but it persisted. In the meantime, we put Jeanette back on her NIV to help her lungs as much as possible and hooked her up to a portable oxygen tank like you’d see at the hospital. It had been a while since I personally attached the gauge, so a few YouTube videos, ChatGPT sessions and one startling, accidental, almost violent release of oxygen later, I got Jeanette on the necessary O2.
We called the equipment company, which was closed for the holiday weekend, and were shuttled to their after-hours call center who walked us through more troubleshooting, none of which worked. They put us in line for the one on-call technician in the region with no estimate of how long it would take.
Meanwhile, we tried to calculate how much oxygen we had in the tanks – not enough for a long-term need. We tried calling several local companies hoping they could help us track down additional oxygen tanks with no luck. If we couldn't keep her oxygen saturation levels up, our only option would be going to the hospital until the technician could arrive.
Thankfully, Jeanette has a small, portable oxygen device for car trips, so we hooked that up to try to preserve the oxygen tanks. Unfortunately, though, it only emits up to 3 liters of oxygen (Jeanette typically receives 4), and it was not very stable. For two hours, we had to monitor Jeanette’s oxygen levels through a pulse oximeter, often needing to physically hold her mask more tightly on her face to keep the oxygen from leaking after her saturation levels dropped over and over.
Four hours after the initial call, we were grateful when the technician came to the house with a new unit. This will only be a temporary solution as it isn’t as powerful as her original machine, but it allowed her to breathe safely all weekend.
To add to our list of things to be thankful for, we are lucky it happened during the day while someone was with her. The machine itself is quite noisy, so it resides down the hall in another room. Had Jeanette been sleeping, she could have been without oxygen for hours, possibly until the morning.
The concentrator is just one piece of equipment we rely on every day to keep Jeanette comfortable, safe and at home. It is easy to look at these machines and see cords, tubes, tanks and noise. But for families living with ALS, this equipment is part of the care team.
So, in the spirit of the post I had originally planned, below is a carousel of photos showing some of the equipment Jeanette and others with ALS often rely on.
A little background: the “oxygen machine” is actually an oxygen concentrator that takes in regular room air, filters out much of the nitrogen and delivers concentrated oxygen. Not everyone with ALS will need this machine, but some do as breathing becomes more challenging. For some, a noninvasive ventilator (NIV) is enough to help move air in and out of the body, but for others, additional oxygen is needed to maintain safe oxygen levels.
Jeanette is one of those people. She receives ongoing oxygen through her NIV, or through a traditional cannula when she eats.
This weekend, Jeanette was finishing eating when we heard a periodic beep: the concentrator was failing. We tried the usual steps to help jump-start it (off/on, clean the filter, etc), but it persisted. In the meantime, we put Jeanette back on her NIV to help her lungs as much as possible and hooked her up to a portable oxygen tank like you’d see at the hospital. It had been a while since I personally attached the gauge, so a few YouTube videos, ChatGPT sessions and one startling, accidental, almost violent release of oxygen later, I got Jeanette on the necessary O2.
We called the equipment company, which was closed for the holiday weekend, and were shuttled to their after-hours call center who walked us through more troubleshooting, none of which worked. They put us in line for the one on-call technician in the region with no estimate of how long it would take.
Meanwhile, we tried to calculate how much oxygen we had in the tanks – not enough for a long-term need. We tried calling several local companies hoping they could help us track down additional oxygen tanks with no luck. If we couldn't keep her oxygen saturation levels up, our only option would be going to the hospital until the technician could arrive.
Thankfully, Jeanette has a small, portable oxygen device for car trips, so we hooked that up to try to preserve the oxygen tanks. Unfortunately, though, it only emits up to 3 liters of oxygen (Jeanette typically receives 4), and it was not very stable. For two hours, we had to monitor Jeanette’s oxygen levels through a pulse oximeter, often needing to physically hold her mask more tightly on her face to keep the oxygen from leaking after her saturation levels dropped over and over.
Four hours after the initial call, we were grateful when the technician came to the house with a new unit. This will only be a temporary solution as it isn’t as powerful as her original machine, but it allowed her to breathe safely all weekend.
To add to our list of things to be thankful for, we are lucky it happened during the day while someone was with her. The machine itself is quite noisy, so it resides down the hall in another room. Had Jeanette been sleeping, she could have been without oxygen for hours, possibly until the morning.
The concentrator is just one piece of equipment we rely on every day to keep Jeanette comfortable, safe and at home. It is easy to look at these machines and see cords, tubes, tanks and noise. But for families living with ALS, this equipment is part of the care team.
So, in the spirit of the post I had originally planned, below is a carousel of photos showing some of the equipment Jeanette and others with ALS often rely on.
The oxygen concentrator. About an hour after this photo, the green light disappeared, replaced by red and orange warning lights and a beep that was far too quiet for something so important.
Our oxygen tank stockpile, which really only adds up to about five hours of oxygen — we think. We were not given clear information on how long each tank would last, so in the middle of everything, we were left trying to calculate it ourselves with Google, AI and best guesses.
The replacement oxygen concentrator we were thankful to get during the holiday weekend.
This is Jeanette's eye-gaze device, called a Tobii. It allows her to continue to communicate by typing one letter at a time. She is able to store common phrases so she can quickly say what she nee
Pardon the look of it - this machine is in the thick of everything. It is Jeanette’s non-invasive ventilator, similar to a traditional BiPAP, but more heavy duty. It helps support her breathing by helping her lungs inhale and exhale as her respiratory muscles weaken.
This is our rolling medical cart. During an emergency situation, we can roll it to the bed quickly to support Jeanette with what she needs.
This lovely torture device is the cough assist. It helps people clear mucus and secretions when their muscles become too weak to produce an effective cough on their own. It works by pushing air into the lungs, similar to a deep inhale, then rapidly reversing to pull air out quickly and simulate a cough. It sounds simple, but for Jeanette, it is miserable.
The suction machine is similar to what you’d expect at the dentist’s office. It does what you’d think: suctions out excess mucus and saliva. It is very important between cough assist sessions.
The nebulizer turns liquid medication into a fine mist that can be inhaled into the lungs. Jeanette does not use it often, but after the flu she needed breathing treatments several times a day, and she still occasionally needs them now. It can help open the airways and loosen mucus when breathing becomes more difficult.
The Joey pump helps us keep Jeanette hydrated through her feeding tube, which is much harder than it sounds. We can set an hourly rate so she receives water slowly and consistently, without overwhelming her system.
One of our first major pieces of equipment was the Hoyer lift. As Jeanette’s leg muscles became less reliable, we started using it to safely transfer her from one place to another. Her nieces also occasionally use it as a swing, because of course they do.
This is Jeanette’s fancy wheelchair. With ALS, families are often told to wait as long as possible before ordering a power wheelchair because many insurance plans will only cover one every several years, and only based on the person’s current needs. Unfortunately, custom chairs also take a long time to build. Several parts of Jeanette’s chair came in wrong or were delayed, which pushed the final product back months longer than expected. Jeanette’s chair can also be controlled by a joystick on the back, which allows someone else to drive now that she can no longer move her hands.
The shower chair helps Jeanette shower safely. It reclines to support her body now that ALS has weakened her core muscles. Even with the chair, showering is still an exhausting experience because of ALS.
This small piece of equipment, found at most drugstores, is incredibly important. The pulse oximeter allows us to keep watch over Jeanette’s oxygen saturation.
It was truly a lifesaver this weekend because we were able to make sure her levels did not drop too low. While 93 is not ideal for Jeanette, it was stable enough that we did not need to go to the hospital.
ALS Awareness Month: The Long Road to Diagnosis
May 11, 2026
Every 90 minutes, someone in the United States is diagnosed with ALS, and someone dies from it.
For many families, though, the path to that diagnosis is not straightforward. There is no single test that simply says, “This is ALS.”
ALS is exceptionally difficult to diagnose. Doctors have to rule out other conditions through clinical exams, imaging, spinal taps, lab work and electromyography. While research into earlier biomarkers is ongoing, most people today still endure long periods of uncertainty, anxiety and repeated, difficult medical appointments, all leading up to the moment when everything changes.
Jeanette’s diagnosis was no exception.
After surgery for a tibial plateau fracture, her second significant leg injury in recent years, and months of hard physical therapy, she still was not walking the way she should have been. Looking back now, Jen wonders if her injuries were not just bad luck, but early signs we did not recognize.
While she was still working through all of that, Jeanette started noticing tingling in her right hand. At first, all signs pointed to a pinched nerve that typically resolve with time and stretching. So she waited, impatiently. But it did not go away. After 12 weeks, she went to the doctor and found out there was no pinched nerve.
She was referred to a neurologist, which took ages to get into. She had an MRI, which sounds routine until you remember that this is Jeanette. She spent the entire time worried there would be a fire and she would be trapped inside the tube, so she got through it by silently singing Disney songs in her head.
The MRI did not provide any answers, so they scheduled her for a needle electromyography, or EMG. Essentially, it checks the health of muscles and the motor neurons that control them by inserting a very thin needle electrode into different muscles to record electrical activity.
It was only supposed to take 30 to 60 minutes. It took three hours. And it, too, was inconclusive. So they scheduled another EMG. Then another.
At this point, Jeanette had seen four different doctors, including out of state. The first two doctors told her it was not ALS. Along the way, they ruled out MS, Parkinson’s, diabetes, brain tumors and spinal tumors.
Jeanette was scared. She was still hoping it was something fixable. At one point, she worried it could be Guillain-Barré syndrome, a condition from which it can take years to recover. Even that would have been preferable to what was to come.
After her final EMG, the fourth doctor, a neurologist (not the one Jeanette now sees for treatment), entered while she was still undressed and alone, with no family or support in the room. He told her without preamble or softness: “You have ALS. You will die within two to five years.” And then he left the room. Jeanette was left sitting there alone, in shock, grappling with those words. Then she had to go home and, as she puts it, “traumatize my family” with the news.
But the doctor's words, as awful as they were, do not define Jeanette. Jeanette refuses to give in to what she calls the “expiration date” her doctor handed her that day. She intends to make the most of every moment with the same determination, curiosity, compassion and stubborn sense of humor she has always had.
ALS has changed so much about Jeanette’s life. But it has not erased the life she is still living.
For many families, though, the path to that diagnosis is not straightforward. There is no single test that simply says, “This is ALS.”
ALS is exceptionally difficult to diagnose. Doctors have to rule out other conditions through clinical exams, imaging, spinal taps, lab work and electromyography. While research into earlier biomarkers is ongoing, most people today still endure long periods of uncertainty, anxiety and repeated, difficult medical appointments, all leading up to the moment when everything changes.
Jeanette’s diagnosis was no exception.
After surgery for a tibial plateau fracture, her second significant leg injury in recent years, and months of hard physical therapy, she still was not walking the way she should have been. Looking back now, Jen wonders if her injuries were not just bad luck, but early signs we did not recognize.
While she was still working through all of that, Jeanette started noticing tingling in her right hand. At first, all signs pointed to a pinched nerve that typically resolve with time and stretching. So she waited, impatiently. But it did not go away. After 12 weeks, she went to the doctor and found out there was no pinched nerve.
She was referred to a neurologist, which took ages to get into. She had an MRI, which sounds routine until you remember that this is Jeanette. She spent the entire time worried there would be a fire and she would be trapped inside the tube, so she got through it by silently singing Disney songs in her head.
The MRI did not provide any answers, so they scheduled her for a needle electromyography, or EMG. Essentially, it checks the health of muscles and the motor neurons that control them by inserting a very thin needle electrode into different muscles to record electrical activity.
It was only supposed to take 30 to 60 minutes. It took three hours. And it, too, was inconclusive. So they scheduled another EMG. Then another.
At this point, Jeanette had seen four different doctors, including out of state. The first two doctors told her it was not ALS. Along the way, they ruled out MS, Parkinson’s, diabetes, brain tumors and spinal tumors.
Jeanette was scared. She was still hoping it was something fixable. At one point, she worried it could be Guillain-Barré syndrome, a condition from which it can take years to recover. Even that would have been preferable to what was to come.
After her final EMG, the fourth doctor, a neurologist (not the one Jeanette now sees for treatment), entered while she was still undressed and alone, with no family or support in the room. He told her without preamble or softness: “You have ALS. You will die within two to five years.” And then he left the room. Jeanette was left sitting there alone, in shock, grappling with those words. Then she had to go home and, as she puts it, “traumatize my family” with the news.
But the doctor's words, as awful as they were, do not define Jeanette. Jeanette refuses to give in to what she calls the “expiration date” her doctor handed her that day. She intends to make the most of every moment with the same determination, curiosity, compassion and stubborn sense of humor she has always had.
ALS has changed so much about Jeanette’s life. But it has not erased the life she is still living.
ALS Awareness Month: Starting With the Basics
May 3, 2026
One of the cruelest parts of ALS is that it can leave the mind and senses clear while taking away the body’s ability to move, speak, swallow and breathe. You feel everything and can do very little physically.
That is something our family didn’t fully understand. There was a lot we didn’t know about ALS until it became part of Jeanette’s life and our family’s life.
May is ALS Awareness Month, and we hope to use this month to share more about what ALS is, the facts, the community and what it has meant for Jeanette.
We are starting with a basic but important understanding: ALS is not just muscle weakness. It is Motor Neuron Disease.
ALS, also known as Lou Gehrig’s disease, attacks the nerve cells that help the brain communicate with the muscles throughout the body. As those nerve cells stop working, otherwise healthy muscles weaken from lack of input and eventually stop responding.
Everyone progresses differently, but over time ALS can take away a person’s independence, mobility and capacity to care for themself.
For Jeanette, ALS has changed nearly every part of daily life. She can no longer move on her own, requires assistance to breathe, uses devices and strategies to communicate her needs and requires significant planning for even the simplest tasks. It means equipment, caregivers, family support and constant adjustments.
But ALS has not changed who she is at heart.
Jeanette is still Jeanette: caring, funny, bright and empathetic. She still enjoys strategizing along with Survivor, challenging friends and family in Wordle and laughing with her nieces.
So for this first awareness post, we want to thank you for being part of her life — for continuing to bolster Jeanette as the incredible person we know and love. Thank you for the prayers, messages, visits, support, donations and love.
Because awareness is not just knowing what ALS stands for.
It is remembering the person living with it.
Please continue to check back for more updates and more facts about ALS awareness throughout the month of May.
That is something our family didn’t fully understand. There was a lot we didn’t know about ALS until it became part of Jeanette’s life and our family’s life.
May is ALS Awareness Month, and we hope to use this month to share more about what ALS is, the facts, the community and what it has meant for Jeanette.
We are starting with a basic but important understanding: ALS is not just muscle weakness. It is Motor Neuron Disease.
ALS, also known as Lou Gehrig’s disease, attacks the nerve cells that help the brain communicate with the muscles throughout the body. As those nerve cells stop working, otherwise healthy muscles weaken from lack of input and eventually stop responding.
Everyone progresses differently, but over time ALS can take away a person’s independence, mobility and capacity to care for themself.
For Jeanette, ALS has changed nearly every part of daily life. She can no longer move on her own, requires assistance to breathe, uses devices and strategies to communicate her needs and requires significant planning for even the simplest tasks. It means equipment, caregivers, family support and constant adjustments.
But ALS has not changed who she is at heart.
Jeanette is still Jeanette: caring, funny, bright and empathetic. She still enjoys strategizing along with Survivor, challenging friends and family in Wordle and laughing with her nieces.
So for this first awareness post, we want to thank you for being part of her life — for continuing to bolster Jeanette as the incredible person we know and love. Thank you for the prayers, messages, visits, support, donations and love.
Because awareness is not just knowing what ALS stands for.
It is remembering the person living with it.
Please continue to check back for more updates and more facts about ALS awareness throughout the month of May.
420 Fun and Birthday Love
April 20, 2026
Today, April 20th, is 420 day, a time for lighting up, eating junk food and maybe procrastinating work. Our family definitely celebrates.
We’ll light the candles on Kaitlin’s birthday cake (Kroger with whippy icing is her favorite), maybe eat the Subway Buy One Get One footlong deal for 420 and distract Kait from work with FaceTime renditions of the Happy Birthday song (sorry Kaitlin's boss).
On a more serious note, I am so grateful to my parents for bringing me into this beautiful world, but even more grateful they gave me the best siblings.
Heaven and earth aligned when Kait was born. Our mom collected stars and moons for Kait, which is appropriate because Kait doesn’t demand attention like a firework, but instead shines consistently, brighter and higher and awe-inducing when you’re lucky enough to be in her orbit.
She cares about the right priorities, is a loving mom and family member, works hard, and is beautiful, strong of spirit and compassionate.
Long before my ALs, we were so close, living together from the time she was born until she got engaged and moved briefly to Denver. She came back, and eventually gave me two loves of my life—my nieces.
She is the one who made this site, schedules nursing and caregivers, arranges visits and literally wipes my butt - too much information I know, but that’s the reality of ALS. It impacts everyone like other emergencies often do.
Join me in wishing Kaitlin a day and year as amazing as she is. Thank you again to everyone reading the updates she posts and for helping us all with relief and medical fund donations, as well as prayers, shares and cares. Love you all— especially Kaitlin
We’ll light the candles on Kaitlin’s birthday cake (Kroger with whippy icing is her favorite), maybe eat the Subway Buy One Get One footlong deal for 420 and distract Kait from work with FaceTime renditions of the Happy Birthday song (sorry Kaitlin's boss).
On a more serious note, I am so grateful to my parents for bringing me into this beautiful world, but even more grateful they gave me the best siblings.
Heaven and earth aligned when Kait was born. Our mom collected stars and moons for Kait, which is appropriate because Kait doesn’t demand attention like a firework, but instead shines consistently, brighter and higher and awe-inducing when you’re lucky enough to be in her orbit.
She cares about the right priorities, is a loving mom and family member, works hard, and is beautiful, strong of spirit and compassionate.
Long before my ALs, we were so close, living together from the time she was born until she got engaged and moved briefly to Denver. She came back, and eventually gave me two loves of my life—my nieces.
She is the one who made this site, schedules nursing and caregivers, arranges visits and literally wipes my butt - too much information I know, but that’s the reality of ALS. It impacts everyone like other emergencies often do.
Join me in wishing Kaitlin a day and year as amazing as she is. Thank you again to everyone reading the updates she posts and for helping us all with relief and medical fund donations, as well as prayers, shares and cares. Love you all— especially Kaitlin
One Small Trim, Bigger Cuts
April 14, 2026
Jeanette recently got a little trim — and in a way that only she could make both funny and memorable.
To help her lungs function better, Jeanette now spends many hours each day wearing her non-invasive ventilator. The straps can be irritating after so many hours, so when the mask comes off, she likes her hair brushed — though what she really wants is a good scalp scratch. With longer hair, and while lying in bed, that simple task can be harder than it sounds.
So after hearing more than once that shorter hair might make life a little easier, Jeanette surprisingly agreed to a haircut, with one caveat: her youngest niece had to be the one to do it.
With a little guidance about where to cut — and using the same scissors we usually use to open boxes and medicine packs — her niece happily got to work. The two of them thought it was hilarious, and thankfully, it turned out great. Best of all, Jeanette did not even have to leave bed.
It was a sweet, funny moment that brought some much-needed lightness to the week.
That trim comes at a time when our family has been making harder cuts. Because the cost of care has become unsustainable, we recently made major changes to Jeanette’s in-home support. We are no longer scheduling through an agency and are instead working directly with some of the caregivers who have been part of her care over the years, while family has been stepping in to help cover additional shifts. We are so grateful to those who have generously given their time and energy to help keep Jeanette cared for and comfortable.
We are also deeply grateful for every prayer, every act of kindness and every bit of support. Jeanette’s care needs remain significant, and every gift helps us continue providing the comfort and support she needs.
Thanks for helping us kick ALS!
To help her lungs function better, Jeanette now spends many hours each day wearing her non-invasive ventilator. The straps can be irritating after so many hours, so when the mask comes off, she likes her hair brushed — though what she really wants is a good scalp scratch. With longer hair, and while lying in bed, that simple task can be harder than it sounds.
So after hearing more than once that shorter hair might make life a little easier, Jeanette surprisingly agreed to a haircut, with one caveat: her youngest niece had to be the one to do it.
With a little guidance about where to cut — and using the same scissors we usually use to open boxes and medicine packs — her niece happily got to work. The two of them thought it was hilarious, and thankfully, it turned out great. Best of all, Jeanette did not even have to leave bed.
It was a sweet, funny moment that brought some much-needed lightness to the week.
That trim comes at a time when our family has been making harder cuts. Because the cost of care has become unsustainable, we recently made major changes to Jeanette’s in-home support. We are no longer scheduling through an agency and are instead working directly with some of the caregivers who have been part of her care over the years, while family has been stepping in to help cover additional shifts. We are so grateful to those who have generously given their time and energy to help keep Jeanette cared for and comfortable.
We are also deeply grateful for every prayer, every act of kindness and every bit of support. Jeanette’s care needs remain significant, and every gift helps us continue providing the comfort and support she needs.
Thanks for helping us kick ALS!
Happy Easter
April 6, 2026
Happy belated Easter from Jeanette and our family.
We celebrated in a completely traditional way: eating day-old Jersey Mike’s subs and watching YouTube together in bed. Plus, Uncle Mike learned how to play Miss Mary Mack.
And the spring weather seems to have ushered in some good luck — we are grateful to share that Jeanette’s sciatica seems to have cleared up. Thank you for all of the prayers, kind messages and home remedies.
With the decrease in pain, Jeanette was so excited to be up for visitors again, and over the past couple of weeks she was blessed to spend time with some loved friends. First, fellow UC Law alumna Gerri stopped by before a long drive to help her son move. Then Leah and Marisa, two friends from UC, came by to catch up and covered Jeanette with prayer. Lastly, Gina, a friend from both Oak Hills High School and UC, and her husband, visited while they were in town for the holiday. Jeanette was so grateful for the chance to see each of them.
We celebrated in a completely traditional way: eating day-old Jersey Mike’s subs and watching YouTube together in bed. Plus, Uncle Mike learned how to play Miss Mary Mack.
And the spring weather seems to have ushered in some good luck — we are grateful to share that Jeanette’s sciatica seems to have cleared up. Thank you for all of the prayers, kind messages and home remedies.
With the decrease in pain, Jeanette was so excited to be up for visitors again, and over the past couple of weeks she was blessed to spend time with some loved friends. First, fellow UC Law alumna Gerri stopped by before a long drive to help her son move. Then Leah and Marisa, two friends from UC, came by to catch up and covered Jeanette with prayer. Lastly, Gina, a friend from both Oak Hills High School and UC, and her husband, visited while they were in town for the holiday. Jeanette was so grateful for the chance to see each of them.
A Closer Look at ALS and Breathing
March 25, 2026
After sharing the last two updates in her own words, Jeanette is taking a break this week to rest her eyes. Communicating takes an enormous amount of effort, but she truly appreciates all of the comments and love, and plans to post again soon.
In the meantime, she wanted to share this video because it offers such a clear look at of one aspect of ALS that can be hard to understand from the outside. In the video, Brooke, who has documented her ALS journey on TikTok for several years, shows the progression of her pulmonary function tests over three years. Jeanette does these same breathing tests as part of her care. It is an honest look at how ALS affects breathing, and one way doctors measure ALS progression over time.
Every ALS journey is unique. In Jeanette’s case, her breathing and lung strength were already gradually declining before she got the flu. The flu then led to a monthlong hospitalization and caused a major setback. She thankfully returned home, but her breathing took a huge hit. Since then, Jeanette has relied on a non-invasive ventilator (think an advanced BiPap machine) and supplemental oxygen. She can go without her ventilator for an hour or two while she eats, as long as she continues to receive oxygen. As you can imagine, it can be quite irritating to wear for such long periods, so Jen loves a good hair brush or scalp massage when it comes off.
We appreciate Brooke for sharing her journey to spread awareness and help foster a sense of community for people living with ALS.
In the meantime, she wanted to share this video because it offers such a clear look at of one aspect of ALS that can be hard to understand from the outside. In the video, Brooke, who has documented her ALS journey on TikTok for several years, shows the progression of her pulmonary function tests over three years. Jeanette does these same breathing tests as part of her care. It is an honest look at how ALS affects breathing, and one way doctors measure ALS progression over time.
Every ALS journey is unique. In Jeanette’s case, her breathing and lung strength were already gradually declining before she got the flu. The flu then led to a monthlong hospitalization and caused a major setback. She thankfully returned home, but her breathing took a huge hit. Since then, Jeanette has relied on a non-invasive ventilator (think an advanced BiPap machine) and supplemental oxygen. She can go without her ventilator for an hour or two while she eats, as long as she continues to receive oxygen. As you can imagine, it can be quite irritating to wear for such long periods, so Jen loves a good hair brush or scalp massage when it comes off.
We appreciate Brooke for sharing her journey to spread awareness and help foster a sense of community for people living with ALS.
@limpbroozkit Can I get a FVCkkkkk ALS
♬ Bang! - AJR
Luck of the Irish!
March 17, 2026
“Here’s to Ray and Christine,” Uncle Dave said at a family dinner, raising a toast to the couple who brought us all together—the Brennens.
My mom and her four siblings grew up in Washington, Pennsylvania, in a small but cozy home. My grandpa worked in the coal mines, and my grandma stayed home to raise the kids. The four girls shared a bed for years, and stories of those early days are still told with laughter.
My Uncle Ray inherited my grandpa’s love of soccer and passed it down through generations—my cousins and now their kids. All five siblings carried forward a strong work ethic and a deep love of family. The Brennen home was always full—of music, harmonies, creativity and connection.
Growing up, I cherished every moment in Washington. It felt like everyone knew everyone, everything was close, and the tea was always in the fridge. There was always a card game going and a home-cooked meal waiting. As a proud Irish family, the Brennens celebrated St. Patrick’s Day with joy, counting their blessings even through tough times.
One of my favorite memories is from studying abroad in 2002, when my mom and sister came to visit me in London—my mom’s first and only trip abroad. At the end of my program, we traveled together to County Cork, where our family’s roots began. We saw the Ring of Kerry, Kinsale and the Blarney Stone—though both sides of our family already have the gift of gab. We stayed at a lovely bed and breakfast, and all three of us felt so lucky to walk where the Brennens came from.
A few years later, my cousin Kat—Katie Bug—took me to Dublin to celebrate her 21st birthday. That trip brought even more lifelong memories and laughter, especially with Irish friends in a local pub.
Whether you’re Irish by blood or not, I hope the luck of the Irish is with you today and always.
I’m so lucky to have you in my life and in my corner. I love reading your comments and texts—I think of you often, even if my responses are slow these days.
J
P.S. The front center player in the team photo is my grandfather, Ray Brennen—my mom’s dad. When my mom passed in 2019, I was heartbroken. Looking back, I may have already been experiencing early ALS symptoms without knowing it. I think watching me go through this would have been incredibly hard for her. I try to believe everything happens for a reason, even when it feels unfair and impossible. I’m grateful she doesn’t have to carry that worry. Love you all.
My mom and her four siblings grew up in Washington, Pennsylvania, in a small but cozy home. My grandpa worked in the coal mines, and my grandma stayed home to raise the kids. The four girls shared a bed for years, and stories of those early days are still told with laughter.
My Uncle Ray inherited my grandpa’s love of soccer and passed it down through generations—my cousins and now their kids. All five siblings carried forward a strong work ethic and a deep love of family. The Brennen home was always full—of music, harmonies, creativity and connection.
Growing up, I cherished every moment in Washington. It felt like everyone knew everyone, everything was close, and the tea was always in the fridge. There was always a card game going and a home-cooked meal waiting. As a proud Irish family, the Brennens celebrated St. Patrick’s Day with joy, counting their blessings even through tough times.
One of my favorite memories is from studying abroad in 2002, when my mom and sister came to visit me in London—my mom’s first and only trip abroad. At the end of my program, we traveled together to County Cork, where our family’s roots began. We saw the Ring of Kerry, Kinsale and the Blarney Stone—though both sides of our family already have the gift of gab. We stayed at a lovely bed and breakfast, and all three of us felt so lucky to walk where the Brennens came from.
A few years later, my cousin Kat—Katie Bug—took me to Dublin to celebrate her 21st birthday. That trip brought even more lifelong memories and laughter, especially with Irish friends in a local pub.
Whether you’re Irish by blood or not, I hope the luck of the Irish is with you today and always.
I’m so lucky to have you in my life and in my corner. I love reading your comments and texts—I think of you often, even if my responses are slow these days.
J
P.S. The front center player in the team photo is my grandfather, Ray Brennen—my mom’s dad. When my mom passed in 2019, I was heartbroken. Looking back, I may have already been experiencing early ALS symptoms without knowing it. I think watching me go through this would have been incredibly hard for her. I try to believe everything happens for a reason, even when it feels unfair and impossible. I’m grateful she doesn’t have to carry that worry. Love you all.
Survivor Wednesdays are Back!
March 11, 2026
Jen here—thanks so much for keeping up with the updates my sister has been writing, and for all your comments on the social posts, positive thoughts, prayers and support.
I’m still working on responding to my birthday messages, but eye gaze is slow so it’s taking some time. I’ve read them all and feel so loved.
As you might imagine, some things I loved doing before ALS are off the table for me now, at least as I enjoyed them before. But I have more time than ever to watch favorite shows while I eat (which takes forever these days) or rest my eyes from communicating with caregivers and loved ones.
Lately I’ve been enjoying the return of Survivor Wednesdays with Season 50.
Some things are harder to watch post-diagnosis—like hospital shows, sad content and funerals in media, for me at least. Even hopeful content can sometimes make me dwell on the life I thought was ahead. But Survivor strategy, compelling casting and competitions are a joy to watch and look forward to.
If you haven’t been watching, this season is two episodes in, so it’s not too late to catch up. Some of my favorites are returning players Christian, Emily and Mike White (who created White Lotus).
I also love Cirie and would love her to finally get a well-deserved win. Almost everyone on this season is such a good player.
I love hearing who friends are rooting for when they watch (I’m looking at you, J K), so if you’re already watching or plan to give it a try, text me who you’re rooting for.
And whatever life is throwing at you lately, keep surviving and thriving—I’m cheering you on and sending you love. ❤️
I’m still working on responding to my birthday messages, but eye gaze is slow so it’s taking some time. I’ve read them all and feel so loved.
As you might imagine, some things I loved doing before ALS are off the table for me now, at least as I enjoyed them before. But I have more time than ever to watch favorite shows while I eat (which takes forever these days) or rest my eyes from communicating with caregivers and loved ones.
Lately I’ve been enjoying the return of Survivor Wednesdays with Season 50.
Some things are harder to watch post-diagnosis—like hospital shows, sad content and funerals in media, for me at least. Even hopeful content can sometimes make me dwell on the life I thought was ahead. But Survivor strategy, compelling casting and competitions are a joy to watch and look forward to.
If you haven’t been watching, this season is two episodes in, so it’s not too late to catch up. Some of my favorites are returning players Christian, Emily and Mike White (who created White Lotus).
I also love Cirie and would love her to finally get a well-deserved win. Almost everyone on this season is such a good player.
I love hearing who friends are rooting for when they watch (I’m looking at you, J K), so if you’re already watching or plan to give it a try, text me who you’re rooting for.
And whatever life is throwing at you lately, keep surviving and thriving—I’m cheering you on and sending you love. ❤️
Quick Update and a Laugh
March 6, 2026
Jen is still experiencing extreme pain in her hip and leg — tomorrow will mark two weeks of nonstop pain. Thankfully, her doctor called in a new medication yesterday and so far it seems to be helping!! Please keep sending good vibes, prayers and love that the pain goes away fully soon.
On a lighter note, I told Jen that it was going to be nearly 80 degrees today in our neck of the woods, and her response was: “Yuck,” followed by a screenshot of her Christmas Countdown. It’s 293 days away for all of you out there who do not count down daily.
Despite the pain in her leg, Jen has been working on a new post that we’re hoping to share soon.
On a lighter note, I told Jen that it was going to be nearly 80 degrees today in our neck of the woods, and her response was: “Yuck,” followed by a screenshot of her Christmas Countdown. It’s 293 days away for all of you out there who do not count down daily.
Despite the pain in her leg, Jen has been working on a new post that we’re hoping to share soon.
A New Way to Stay Connected
March 4, 2026
We added a new way to stay connected with Team Jeanette.
If you’d like to receive an email whenever we post an update, you can now sign up directly on the site. Many of you check the site regularly — this simply makes it easier to follow along with Jen’s journey. As we share happy moments, hard days and everything in between, we’ll send a quick email to let you know.
The signup form is now live on the site. After signing up, you’ll receive a confirmation email to make sure it was you.
As always, thank you for continuing to support Jeanette.
If you’d like to receive an email whenever we post an update, you can now sign up directly on the site. Many of you check the site regularly — this simply makes it easier to follow along with Jen’s journey. As we share happy moments, hard days and everything in between, we’ll send a quick email to let you know.
The signup form is now live on the site. After signing up, you’ll receive a confirmation email to make sure it was you.
As always, thank you for continuing to support Jeanette.
Slushies, Sciatica and Birthday Joy
February 27, 2026
This post is a little delayed. Jen has had a hard week.
After some research (and a helpful suggestion from Diane — thank you!), it appears she may be dealing with sciatica in her right leg, which has been causing significant pain and discomfort. We are using repositioning and heat to try to relieve it, but so far the only things that seem to help are Tylenol and lidocaine spray.
That said, we have a happy update as well.
Jen’s birthday fun extended well past her actual birthday with a get-together that celebrated not one, but four birthdays. Friends brought the fun to Northern Kentucky to celebrate Kristin, Cami, Lauren and Jeanette. Jeanie and Jodi rounded out the love fest.
What’s more, Jeanette received an incredibly thoughtful gift: a slushy machine.
As ALS progresses, eating and drinking have gotten harder. Many of Jen’s favorite foods are no longer viable options, and she is no longer able to safely drink liquids. One bright light has been slushies, as the thicker consistency makes them easier to swallow safely.
To put the Ninja to good use, the party crew headed to Meijer and stocked Jen up with new flavors to try. So far, she has enjoyed Hi-C, grape and Sprite, and hopes to try iced tea and Coke soon. Before her birthday, she would enjoy the occasional Sonic slushy. Now, she can enjoy slushies any time, any day, in any flavor. So far, grape is her favorite. In fact, she says it rivals Sonic’s.
Unfortunately, the leg pain kept Jen from visiting with her friends as much as she would have liked. Still, she is beyond grateful they made the trip and brought joy that will linger long after the weekend.
After some research (and a helpful suggestion from Diane — thank you!), it appears she may be dealing with sciatica in her right leg, which has been causing significant pain and discomfort. We are using repositioning and heat to try to relieve it, but so far the only things that seem to help are Tylenol and lidocaine spray.
That said, we have a happy update as well.
Jen’s birthday fun extended well past her actual birthday with a get-together that celebrated not one, but four birthdays. Friends brought the fun to Northern Kentucky to celebrate Kristin, Cami, Lauren and Jeanette. Jeanie and Jodi rounded out the love fest.
What’s more, Jeanette received an incredibly thoughtful gift: a slushy machine.
As ALS progresses, eating and drinking have gotten harder. Many of Jen’s favorite foods are no longer viable options, and she is no longer able to safely drink liquids. One bright light has been slushies, as the thicker consistency makes them easier to swallow safely.
To put the Ninja to good use, the party crew headed to Meijer and stocked Jen up with new flavors to try. So far, she has enjoyed Hi-C, grape and Sprite, and hopes to try iced tea and Coke soon. Before her birthday, she would enjoy the occasional Sonic slushy. Now, she can enjoy slushies any time, any day, in any flavor. So far, grape is her favorite. In fact, she says it rivals Sonic’s.
Unfortunately, the leg pain kept Jen from visiting with her friends as much as she would have liked. Still, she is beyond grateful they made the trip and brought joy that will linger long after the weekend.
From Jen's TikTok Feed
February 19, 2026
Jen shared this with me today and I thought it was worth passing along to those who are near and dear to her.
Jen follows Brooke, who has been documenting her ALS journey, on TikTok. The video highlights something many people don’t realize: ALS can be painful. Even when movement is lost, pain doesn’t disappear; in many ways, it actually increases. Stiffness, cramps, nerve pain and the strain of immobility are daily realities for Jen and many living with ALS.
TikTok has been a wonderful community for Jen to witness others facing similar challenges. If you're looking to learn more about ALS, we'd recommend following @limpbroozkit.
Jen follows Brooke, who has been documenting her ALS journey, on TikTok. The video highlights something many people don’t realize: ALS can be painful. Even when movement is lost, pain doesn’t disappear; in many ways, it actually increases. Stiffness, cramps, nerve pain and the strain of immobility are daily realities for Jen and many living with ALS.
TikTok has been a wonderful community for Jen to witness others facing similar challenges. If you're looking to learn more about ALS, we'd recommend following @limpbroozkit.
A Super Sibling Sleepover Birthday
February 16, 2026
Thank you to everyone who took the time to wish Jeanette a happy birthday. Your messages truly meant so much. 💜
Jen celebrated with her siblings and nieces during our annual Super Sibling Sleepover! Instead of cake, she enjoyed a birthday grape slushy (much easier these days, and still tasty!).
Traditionally the birthday girl picks the movie, but this year she generously handed over the remote to her nieces. With them at the helm, we were treated to their favorite YouTubers. We watched several Moriah Elizabeth videos, part of Beast Games and, of course, plenty of dog videos.
Dad joined us the next day for a birthday lunch, and we wrapped up with Jen’s favorite: Harry Potter 20 Questions. It ended with a debate about if a patronus counts as a person (it does not).
Overall, it was simple, loud and silly — just the way she likes it.
Jen celebrated with her siblings and nieces during our annual Super Sibling Sleepover! Instead of cake, she enjoyed a birthday grape slushy (much easier these days, and still tasty!).
Traditionally the birthday girl picks the movie, but this year she generously handed over the remote to her nieces. With them at the helm, we were treated to their favorite YouTubers. We watched several Moriah Elizabeth videos, part of Beast Games and, of course, plenty of dog videos.
Dad joined us the next day for a birthday lunch, and we wrapped up with Jen’s favorite: Harry Potter 20 Questions. It ended with a debate about if a patronus counts as a person (it does not).
Overall, it was simple, loud and silly — just the way she likes it.
A Super Bowl Update from Jen
(with some AI help, because ALS makes writing harder these days)
February 8, 2026
Growing up, Super Bowl Sunday meant my Aunt Carol and Uncle Jim’s house—packed with food, noise and family. It was pure fun and togetherness.
Later, in high school and early college, the Super Bowl became something else entirely. I’d shut myself into the tiny Buffalo Wild Wings office, racing to keep up with nonstop phones and, later in the day, the registers—doing everything I could to keep things moving fast. It was chaotic and exhausting.
Then came another chapter. After my Aunt Cindy and Uncle Scott moved to Florida, I started helping get ready for their Super Bowl parties. My aunt hated Tom Brady. I loved his grit, work ethic, and relentless competitive drive. In 2017, when the Patriots were down 28–3, everyone said it was over. I was miserable… and then completely unbearable as the comeback unfolded, like I had personally mounted it myself.
Now, during ALS, I have my own game plan. Unfortunately, so far, there hasn’t been a truly winning play—at least not until there’s a cure. But I am fighting as hard as I can. And just like the Seahawks and the Patriots, I rely on my team.
Thank you—for reading, following, commenting, texting, praying, loving, helping, and funding. It all matters more than you know.
Right now, the Patriot Family Foundation (a 501(c)(3))—which has been helping me and many other military family members fund care—only has a couple of weeks of funding left. Even with negotiated drug prices, less expensive nursing/STNAs, and every cost-cutting measure we can manage, ALS-related expenses alone are still close to $15,000 a month, on reduced income, while regular household expenses continue unchanged.
We handle what we can, and we are incredibly grateful for the support through this fund. It relieves so much stress and truly helps me keep fighting, even when it feels like I’m down 28-3.
I’ll see you more this week with a special video on Friday or Saturday during our Super Sibling Sleepover for my birthday week.
Love you all, and Happy Super Bowl! 🏈 🏆 🎉
Jeanette
Later, in high school and early college, the Super Bowl became something else entirely. I’d shut myself into the tiny Buffalo Wild Wings office, racing to keep up with nonstop phones and, later in the day, the registers—doing everything I could to keep things moving fast. It was chaotic and exhausting.
Then came another chapter. After my Aunt Cindy and Uncle Scott moved to Florida, I started helping get ready for their Super Bowl parties. My aunt hated Tom Brady. I loved his grit, work ethic, and relentless competitive drive. In 2017, when the Patriots were down 28–3, everyone said it was over. I was miserable… and then completely unbearable as the comeback unfolded, like I had personally mounted it myself.
Now, during ALS, I have my own game plan. Unfortunately, so far, there hasn’t been a truly winning play—at least not until there’s a cure. But I am fighting as hard as I can. And just like the Seahawks and the Patriots, I rely on my team.
Thank you—for reading, following, commenting, texting, praying, loving, helping, and funding. It all matters more than you know.
Right now, the Patriot Family Foundation (a 501(c)(3))—which has been helping me and many other military family members fund care—only has a couple of weeks of funding left. Even with negotiated drug prices, less expensive nursing/STNAs, and every cost-cutting measure we can manage, ALS-related expenses alone are still close to $15,000 a month, on reduced income, while regular household expenses continue unchanged.
We handle what we can, and we are incredibly grateful for the support through this fund. It relieves so much stress and truly helps me keep fighting, even when it feels like I’m down 28-3.
I’ll see you more this week with a special video on Friday or Saturday during our Super Sibling Sleepover for my birthday week.
Love you all, and Happy Super Bowl! 🏈 🏆 🎉
Jeanette
Snow Place Like Home
January 27, 2026
We haven't posted in a while, which around here often means no news is good news. While the snow definitely impacted things, we are thankful we did not lose power, especially knowing how many others were affected. In all, we got just over 9 inches of snow, which didn't beat single-day accumulation records, but definitely made a difference in day-to-day living and required a bit of extra planning for Jeanette. Thankfully, things seem to be heading back to "normal."
Thank you everyone who checked in and continue to send Jen good thoughts.
Thank you everyone who checked in and continue to send Jen good thoughts.
Welcoming the New Year from Bed (and That’s Great!)
January 6, 2026
Jeanette was able to ring in the end of 2025 from her own bed, something we didn’t take for granted after the roller coaster of the past couple of weeks.
She’s still working through some lingering effects from her hospital stay. The medications are making her feel nauseated at times, and she’s experiencing numbness and tingling in her feet, which is likely related to how she was positioned in the hospital.
On the brighter side, the hospital visit enabled us to get a new tool to help keep Jeanette hydrated - a Joey!
Hydration has always been a challenge. While we do our best to have family or nurses here as much as possible, Jeanette doesn’t have round-the-clock care. Even when help is here, the simplest tasks take time, and with ALS, everything requires more effort than it should.
While we can't fix everything, we now have help with hydration. Thanks to the Joey, Jeanette can get water directly through her PEG tube, which means steady hydration without exhausting her.
As someone with exactly zero medical background, I was unreasonably excited when I got it set up and working. So proud, in fact, that I may have immediately taken a photo… without giving Jeanette any warning.
Sorry, Jeanette. 😅
She’s still working through some lingering effects from her hospital stay. The medications are making her feel nauseated at times, and she’s experiencing numbness and tingling in her feet, which is likely related to how she was positioned in the hospital.
On the brighter side, the hospital visit enabled us to get a new tool to help keep Jeanette hydrated - a Joey!
Hydration has always been a challenge. While we do our best to have family or nurses here as much as possible, Jeanette doesn’t have round-the-clock care. Even when help is here, the simplest tasks take time, and with ALS, everything requires more effort than it should.
While we can't fix everything, we now have help with hydration. Thanks to the Joey, Jeanette can get water directly through her PEG tube, which means steady hydration without exhausting her.
As someone with exactly zero medical background, I was unreasonably excited when I got it set up and working. So proud, in fact, that I may have immediately taken a photo… without giving Jeanette any warning.
Sorry, Jeanette. 😅
Christmastime in the Hospital
December 31, 2025
If you’ve been following on Facebook, you’ve already heard some of this, but we wanted to share a fuller update here.
Let’s start with some good news: Jeanette was able to enjoy Christmas Day at home, surrounded by family, something that almost didn’t happen thanks to the flu. We played games, ate Jeanette’s favorite foods, and she was very happy.
The next day, things didn’t go as planned. Despite how difficult it is for her to get out of the house, Jeanette was determined to leave home for the first time since April 2024 for a non-medical reason. She was also thrilled to rejoin our Brennen-family Christmas party after missing it last year. After a day of preparation and travel, Jeanette arrived at our aunt’s house and enjoyed being surrounded by so much family.
Unfortunately, after about an hour, Jeanette developed a cough and her oxygen saturation dropped. An ambulance was called, and she was taken to the hospital. It was heartbreaking for her to miss the rest of Christmas and spend the holiday hospitalized, but it soon became clear that being there was necessary. Doctors found that she had pneumonia and a partially collapsed lung, which required treatment and close monitoring.
The next day, Jeanette was feeling significantly better. Family members were able to visit her in the hospital, which meant a great deal to her. While it wasn’t the same as being together at the Christmas party, it brought her some joy — though, being Jen, she did try to convince the doctors to let her leave briefly to join the festivities.
Unfortunately, she wasn’t able to go home the next day, or the day after. First, her labs weren’t where the doctors wanted them to be, and then she developed a pulmonary embolism (blood clot), which has extended her stay longer than expected.
One piece of encouraging news is that Jeanette’s heart function has rebounded, improving from where it was after she had the flu two years ago.
Her labs are looking better today, and we’re hopeful we’ll receive good news soon about going home.
As always, thank you for continuing to keep Jeanette in your thoughts through every high and low. Your support means more than we can express.
Let’s start with some good news: Jeanette was able to enjoy Christmas Day at home, surrounded by family, something that almost didn’t happen thanks to the flu. We played games, ate Jeanette’s favorite foods, and she was very happy.
The next day, things didn’t go as planned. Despite how difficult it is for her to get out of the house, Jeanette was determined to leave home for the first time since April 2024 for a non-medical reason. She was also thrilled to rejoin our Brennen-family Christmas party after missing it last year. After a day of preparation and travel, Jeanette arrived at our aunt’s house and enjoyed being surrounded by so much family.
Unfortunately, after about an hour, Jeanette developed a cough and her oxygen saturation dropped. An ambulance was called, and she was taken to the hospital. It was heartbreaking for her to miss the rest of Christmas and spend the holiday hospitalized, but it soon became clear that being there was necessary. Doctors found that she had pneumonia and a partially collapsed lung, which required treatment and close monitoring.
The next day, Jeanette was feeling significantly better. Family members were able to visit her in the hospital, which meant a great deal to her. While it wasn’t the same as being together at the Christmas party, it brought her some joy — though, being Jen, she did try to convince the doctors to let her leave briefly to join the festivities.
Unfortunately, she wasn’t able to go home the next day, or the day after. First, her labs weren’t where the doctors wanted them to be, and then she developed a pulmonary embolism (blood clot), which has extended her stay longer than expected.
One piece of encouraging news is that Jeanette’s heart function has rebounded, improving from where it was after she had the flu two years ago.
Her labs are looking better today, and we’re hopeful we’ll receive good news soon about going home.
As always, thank you for continuing to keep Jeanette in your thoughts through every high and low. Your support means more than we can express.
When Plans Fell Apart, Friends Came Through
December 15, 2025
Jeanette had friends travel in from all over the country to spend the weekend with her, something that doesn’t happen often. Because ALS makes it hard to predict how she’ll feel and how much energy she’ll have, visits are often rescheduled or continuously delayed.
When the plans were first shaping up, friends from California and Texas lamented the “cold” weather we often see in Northern Kentucky in December (40–50 degrees)…and apparently jinxed us. We were hit with both record cold and record snowfall: temperatures dropped to 0 degrees (even colder with windchill), and nearly five inches of snow fell.
Saturday’s plan was a rare trip out to the aquarium. But when the snow timeline moved up, it just wasn’t safe or feasible to get her out of the house. It was a major disappointment to Jeanette, as she hasn’t left the house since April 2024, except for doctor’s appointments. Despite the change, her friends "brought the party to her.” They spent the day creating Christmas crafts, telling stories, laughing and sharing lots of joy.
The weather continued to create challenges. The snow kept Jeanette’s brother from making it in that night to help, and one of our aides was unfortunately in a car accident and couldn’t come for her Sunday shift. Once again, Jeanette’s friends stepped in without hesitation, helping however they could.
This weekend certainly didn’t go as planned, but we are grateful Jeanette’s friends were able to visit and turn a difficult situation into something joyful.
When the plans were first shaping up, friends from California and Texas lamented the “cold” weather we often see in Northern Kentucky in December (40–50 degrees)…and apparently jinxed us. We were hit with both record cold and record snowfall: temperatures dropped to 0 degrees (even colder with windchill), and nearly five inches of snow fell.
Saturday’s plan was a rare trip out to the aquarium. But when the snow timeline moved up, it just wasn’t safe or feasible to get her out of the house. It was a major disappointment to Jeanette, as she hasn’t left the house since April 2024, except for doctor’s appointments. Despite the change, her friends "brought the party to her.” They spent the day creating Christmas crafts, telling stories, laughing and sharing lots of joy.
The weather continued to create challenges. The snow kept Jeanette’s brother from making it in that night to help, and one of our aides was unfortunately in a car accident and couldn’t come for her Sunday shift. Once again, Jeanette’s friends stepped in without hesitation, helping however they could.
This weekend certainly didn’t go as planned, but we are grateful Jeanette’s friends were able to visit and turn a difficult situation into something joyful.
A Thanksgiving Full of Gratitude
November 27, 2025
Since it’s too difficult for Jeanette to leave her bed unless absolutely necessary, we brought Thanksgiving to her, table, chairs and all. We filled our plates with Jeanette’s favorite foods: ham, turkey, green beans, mashed potatoes, cottage cheese and crescent rolls. It takes Jen longer to enjoy her favorites these days, but she enjoyed every bite surrounded by family.
After dinner, we played Foreheads, which Jen absolutely loved. Seeing her light up during the game was the best part of the day. You can tell we're family: Jeanette and Mikey wrote Mrs. Claus, and Kaitlin wrote Santa Claus. Jeanette's dad and youngest niece wrote Taylor Swift, and her oldest neice wrote Sabrina Carpenter!
Jen told us this was the best Thanksgiving she’s had since her diagnosis, which is an incredible joy given that with ALS each day seems to be harder than the last.
As a family, we’re feeling especially grateful for time together, small joys and for all of you. Your love, donations, prayers and messages have meant more than you know. Thank you for supporting Jeanette and for holding us close in such a hard season.
After dinner, we played Foreheads, which Jen absolutely loved. Seeing her light up during the game was the best part of the day. You can tell we're family: Jeanette and Mikey wrote Mrs. Claus, and Kaitlin wrote Santa Claus. Jeanette's dad and youngest niece wrote Taylor Swift, and her oldest neice wrote Sabrina Carpenter!
Jen told us this was the best Thanksgiving she’s had since her diagnosis, which is an incredible joy given that with ALS each day seems to be harder than the last.
As a family, we’re feeling especially grateful for time together, small joys and for all of you. Your love, donations, prayers and messages have meant more than you know. Thank you for supporting Jeanette and for holding us close in such a hard season.
Pink Eye, Christmas Trees, and Scattergories—Oh My!
November 16, 2025
It’s been a long two weeks for Jen. The week after the tube replacement was painful, but thankfully the site is now healed. Just as she was starting to feel back to normal, she caught a stomach bug, followed by pink eye; the latter making communication through her eye-gaze device even more challenging than usual.
Thankfully, she had her Christmas tree to bring her some joy. Knowing how much Jen loves Christmas, her friend J. K. came over on Halloween night to haul it up from the basement and set it up so she could enjoy it early.
Sunday brought an even bigger lift. Jen was already enjoying seeing her nieces for the first time in a couple of weeks when her Aunt Cindy, who normally lives in Florida this time of year, surprised her with a visit, along with her “chauffeur,” Jen’s brother, Mike. Mike played Scattergories with the kids while Jen, Cindy, and Kaitlin talked and shared plenty of laughs, especially at some of the more creative Scattergories answers.
And the day didn’t end there. After Aunty Cindy headed out, Uncle Jim stopped by, and the girls had a blast goofing around with him and trying to steal his hat, while Kaitlin hung the very last of the ornaments on the Christmas tree.
Visits like this remind us just how lucky we are to have so much love and support from friends and family.
Thankfully, she had her Christmas tree to bring her some joy. Knowing how much Jen loves Christmas, her friend J. K. came over on Halloween night to haul it up from the basement and set it up so she could enjoy it early.
Sunday brought an even bigger lift. Jen was already enjoying seeing her nieces for the first time in a couple of weeks when her Aunt Cindy, who normally lives in Florida this time of year, surprised her with a visit, along with her “chauffeur,” Jen’s brother, Mike. Mike played Scattergories with the kids while Jen, Cindy, and Kaitlin talked and shared plenty of laughs, especially at some of the more creative Scattergories answers.
And the day didn’t end there. After Aunty Cindy headed out, Uncle Jim stopped by, and the girls had a blast goofing around with him and trying to steal his hat, while Kaitlin hung the very last of the ornaments on the Christmas tree.
Visits like this remind us just how lucky we are to have so much love and support from friends and family.
The One Where the Tube Came Out Again
October 29, 2025
Friday was already set to be a hard day - Jeanette was scheduled to have her feeding tube replaced with the correct size after the emergency replacement a few weeks ago. Days like this require a lot of preparation, effort and discomfort for Jeanette. However, when her aide went to give her her morning medicine, she found that the tube had come out...again. Her husband called the surgeon right away, and he said to try putting it back in to keep the site from closing and then bring her in for her scheduled surgery.
He tried but just couldn’t get it back in. Thankfully, we are lucky to have a surgeon in our extended family, Kaitlin's father-in-law, Reed. He and Diane rushed over to help. He gave it a try too, but the site had already started to close up. Reed and Diane kindly stayed to help Eric and the aide get Jen out of the house as quickly as possible.
Her specialists worked with difficulty to open the site back up, starting with a small tool, then slowly dilating it until they could finally get the right-sized tube in place. To make matters worse, because Jen takes her medicine through her tube, she had to go through the the home attempts and then the extended procedure without any pain medication.
While it was a terrible and painful day, we are beyond thankful that Jeanette was already scheduled for her tube replacement. If she hadn’t been, we likely would have ended up at the smaller, local hospital again, which doesn’t carry her tube size and may not have been equipped to reopen the site once it had started to close. So while it was a trying day, the timing truly worked out in the best way it could have.
Jen was able to come home that same day. The site is still sore and tender, and the tube sometimes shifts, which causes pain. We’ve been trying to use medical tape and other ways to keep it more stable and comfortable. It’s been a tough few days, but each day it’s getting a little better — one small step at a time.
Thank you all for the continued love, prayers, and encouragement — they mean more than you know.
He tried but just couldn’t get it back in. Thankfully, we are lucky to have a surgeon in our extended family, Kaitlin's father-in-law, Reed. He and Diane rushed over to help. He gave it a try too, but the site had already started to close up. Reed and Diane kindly stayed to help Eric and the aide get Jen out of the house as quickly as possible.
Her specialists worked with difficulty to open the site back up, starting with a small tool, then slowly dilating it until they could finally get the right-sized tube in place. To make matters worse, because Jen takes her medicine through her tube, she had to go through the the home attempts and then the extended procedure without any pain medication.
While it was a terrible and painful day, we are beyond thankful that Jeanette was already scheduled for her tube replacement. If she hadn’t been, we likely would have ended up at the smaller, local hospital again, which doesn’t carry her tube size and may not have been equipped to reopen the site once it had started to close. So while it was a trying day, the timing truly worked out in the best way it could have.
Jen was able to come home that same day. The site is still sore and tender, and the tube sometimes shifts, which causes pain. We’ve been trying to use medical tape and other ways to keep it more stable and comfortable. It’s been a tough few days, but each day it’s getting a little better — one small step at a time.
Thank you all for the continued love, prayers, and encouragement — they mean more than you know.
A Tough Week
October 21, 2025
Sometimes it feels like one step forward, two steps back. We are so excited for Eric, who started his new job last month. With the new job came new insurance. He requested to be removed from their joint insurance plan while keeping Jen’s coverage active. Unfortunately, there was a mix-up, and both were removed. While Jeanette has been re-enrolled, her deductible reset, meaning all the progress they had made toward meeting it this year was lost.
The timing couldn’t be worse. Just a couple of weeks ago, Jeanette had to be taken by ambulance to the ER for an emergency G-tube replacement. Because it was an urgent situation, the hospital had to use what they had on hand: a size 18 tube instead of her needed size 20. Now, she’ll have to undergo another procedure this Friday to replace it with the correct size.
The thought of another painful procedure so soon after the last one is hard enough, but the financial strain makes it even more difficult.
We know so many of you care deeply for Jeanette and continue to send your love, prayers, and support, and that truly means the world. We’ll post again after surgery with an update.
The timing couldn’t be worse. Just a couple of weeks ago, Jeanette had to be taken by ambulance to the ER for an emergency G-tube replacement. Because it was an urgent situation, the hospital had to use what they had on hand: a size 18 tube instead of her needed size 20. Now, she’ll have to undergo another procedure this Friday to replace it with the correct size.
The thought of another painful procedure so soon after the last one is hard enough, but the financial strain makes it even more difficult.
We know so many of you care deeply for Jeanette and continue to send your love, prayers, and support, and that truly means the world. We’ll post again after surgery with an update.
Swifties Unite!
October 12, 2025
Jeanette’s cousin, Jess, knows her love for Taylor Swift All Too Well, so to celebrate the release of Taylor’s new album, she pre-ordered special Taylor-themed cookies from her local bakery in Pennsylvania and shipped them down as a surprise! Jen got to enjoy them with her nieces (her favorite mini Swifties). She tried to encourage them to learn some of Taylor's new dance moves, but they were too busy enjoying the cookies.
Emergency Tube Replacement
October 8, 2025
Over the weekend, Jeanette’s feeding tube was accidentally pulled out. We had to call 911 and take her by ambulance to the ER to have a new one placed. Thankfully, the doctors were able to replace it quickly. If too much time passes, the site can close, making it much more serious. We’re so grateful she’s okay, but the experience was extremely painful and traumatic for Jeanette, not to mention costly.
We’re especially thankful for the Fort Mitchell first responders, and St. E's (Edgewood) ER doctor, nurse and radiology team who acted so quickly and compassionately to get Jeanette the care she needed. We've experienced a lot of specialists over the last four years, and while it's never a happy reason, this group of people were some of the kindest we've been blessed to encounter.
The last week has been painful for Jeanette as she heals from the procedure, and we're learning to use the new tube so please send some positive vibes her way!
We’re especially thankful for the Fort Mitchell first responders, and St. E's (Edgewood) ER doctor, nurse and radiology team who acted so quickly and compassionately to get Jeanette the care she needed. We've experienced a lot of specialists over the last four years, and while it's never a happy reason, this group of people were some of the kindest we've been blessed to encounter.
The last week has been painful for Jeanette as she heals from the procedure, and we're learning to use the new tube so please send some positive vibes her way!
Our First Post!
September 20, 2025
Over time, it’s become more difficult for Jeanette to keep everyone updated about her progression, and with much of our time focused on her care, it’s also been hard for us to make sure family and friends stay in the loop. We’re also so grateful that several people have asked how they can help, so we decided to create this site to share updates and make it easier for those who are interested and able to support her care.