It’s a unique experience, living knowing you’re dying sooner rather than later. This June, it will be 10 years since I was diagnosed with the death sentence that is Amyotrophic Lateral Sclerosis (ALS). June 20, 2016, a well recognized, highly empathic, expert in the field told me that given my atypical characteristics, and rapid progression, he expected that within three months I would need to use breathing and feeding tubes. He stated that, while most patients with ALS pass away within 2 to 5 years, he expected that I had at most a year from the date of diagnosis. He said that I could expect my speech to go away, to lose my ability to chew and swallow on my own, and that eventually I will lose the ability to breathe. You may have heard that most people with ALS pass away within 2 to 5 years of diagnosis, but did you know that barely 10 percent live more than 10 years past their diagnosis? June will bring me into that lucky percentage, next comes the hope of the 5 percent of people living with ALS who make it 20 years past their diagnosis. With so many promising things in the pipeline I’m ready for the statistics to change!

 I have already surpassed the medical experts’ expectations and live in constant expectation of being fully and completely healed.  We are already witnessing a miracle. While my prognosis is no different, my faith is also the same. It is a daily testament each time God helps me to move, breath, and be understood. Moving now feels like the last mile of a marathon, my mind believes I can do it but my body is shaking and may give out at any time. Speech is even more difficult, frequently my jaw just refuses; so, I’m always debating which words are worth the effort.

Every conversation requires translation, whether I’m speaking with my mouth or my eyes, I’m always rotating the words in my head. Constantly trying to find the shortest possible path to my point- NOT something that comes intuitively to a psychologist. You know how most students look for the biggest font and spacing to make the page limit? I was never that student. I vividly remember handwriting a paper in the 6th grade that was over a hundred pages. My homeroom teacher asked if she could keep it to frighten the incoming class. I’ve always been talkative but the fascia holding my thoughts hostage has drastically limited what I can say at any given time. Orally, I just can’t move enough; and physically, it takes time to type with my eyes. It’s a MASSIVE blessing to be able to use my own words again, but conversation still isn't easy. In New Jersey, people tend to engage in rapid fire repartee, and my house is more boisterous than most! Fortuitously, my husband and brother are blessed with wonderful memories, because by the time I respond most people have forgotten the question. I try to type out information ahead to better facilitate a 'normal' conversation, but it’s an uphill battle. I know it’s hard on my family; it’s equally overwhelming dealing with the expectation of loquaciousness while your mouth is being held shut by your musculature. Sometimes I think texting is the most natural. I get to choose my words and no one is stressed if it takes a little longer. Nevertheless, even though I am blessed to be able to use technology to translate my thoughts- everything comes with a cost.

Bridging Voices (an amazing nonprofit dedicated to facilitating communication for individuals with ALS)  has transformed my ease of access with the tobii dynavox eye gaze communication system and even helped me use my phone again. It has transformed my daily life, but like everything else, there's a long way to go. Think about it. The way eye gaze technology works is by using your iPad camera to track your gaze. It is amazing to have the ability to communicate more easily again, to break out of the isolation imposed by ALS's weight on my tongue. But, you know how you feel after multiple video calls? The headache, pressure behind your eyes, nausea, vertigo? Imagine needing that to communicate. It's absolutely worth it, but exhausting nonetheless.  Similarly, contrary to Tobii's advertising, the eye gaze technology doesn't work well with any sunlight or wind. So, it's a choice to communicate or enjoy the world outside. Lately, I've been choosing to be understood, but I'm sure there'll be many beach days this summer where I'll choose the sunshine and sit in silence.

My tobi is a AMAZING device but removing all expression from your speech with a generic voice- doesn't sound like ME. Unfortunately, I heard about voice banking too late in my diagnosis to record my own voice. I was THRILLED when I found out that Elevenlabs could create a clone of my old voice, but by then it'd had already been over 8 years since my speech had been impacted. And even though I have a MILLION  photos- I didn’t have video clips. I reached out to family and friends but still didn’t have enough audio to recreate my voice until I remembered my old MacBook pro. It couldn’t turn on anymore, but it has hours of my graduate school presentations. AMAZINGLY, Nachum Lehman, the INCREDIBLE Technical Director at Bridging Voices was able to unlock my old videos and use them to recreate MY voice on May 19th 2025, my younger brother’s birthday.

He had the best reaction too. We were talking in the kitchen, he was eating while cleaning, just reviewing the plan for the day when I switched over to my old voice newly recreated by Elevenlabs and he just stopped moving. He said, "WOA that’s YOUR voice!” and came over and kissed me on the top of my head. It was harder for my mom. Initially, hearing ME sound like me, high energy and rapid fire, while still weak and pretty paralyzed just made her sad. But the most surprising thing was my then 2 year old nephew, who had ONLY heard me speak with tobi’s generic female voice. He ran into my room to say hello and stopped when he heard my new voice. “That’s mommy’s voice.,” he whispered to my parents, very upset that his Tia Kait had stolen his mommy’s voice. We tried to explain that since I’m the oldest sibling, I spoke first- but to be fair, HE hadn’t heard me speak first. It all worked out when my sister came home, still speaking, but it was amazing to be compared to a person again, rather than a computer.

It made me MUCH more comfortable presenting because I feel like me again. I love it! It sounds like I do in my head, but since speech needs to be relayed from Elevenlabs servers it’s slower than the tobi voice.  It also requires internet access because it sends the text to elevenlabs and the audio is retrieved from their servers. So, I still use both voices, but it is a HUGE blessing to be able to use my OWN voice again- when there is time and we’ve got wifi. Understandably, the technology is super expensive but elevenlabs and bridging voice are doing it for free for people with ALS. I just needed a doctor's note, verifying my diagnosis. So, for anyone with ALS who misses the sound of their old voice when they speak- I highly recommend reaching out to Bridging Voices. 

It still requires a lot of patience for people to talk with me. I've lost count of the people who've walked away before I could respond. Unless you're familiar with the technology, it's counterintuitive to keep looking at someone staring at a screen. I'm amazed by how gracious people can be!  Prior to being forced to slow down, it would not have come naturally to me either.So , we need to continue to raise awareness and continue to keep striving for better technology, because I’ve got more to say! 

The last few years have been filled with excruciating pain, endless frustration, and daily miracles.   CS Lewis once wrote that, “We are half-hearted creatures, fooling about… when infinite joy is offered us, like an ignorant child who wants to go on making mud pies in a slum because he cannot imagine what is meant by the offer of a holiday at the sea. We are far too easily pleased.” I love that God wants better for us then we can dream to ask Him. Romans 8:15-17 in the Message says, “This resurrection life you received from God is not a timid, grave-tending life. It’s adventurously expectant, greeting God with a childlike ‘What’s next, Papa?’ God’s Spirit touches our spirits and confirms who we really are. We know who He is, and we know who we are: Father and children... If we go through the hard times with Him, then we’re certainly going to go through the good times with Him!”  Anyone who has met my dad knows how much he loves giving gifts; they are thoughtful, helpful, usually expensive, and tailored to the receiver. Why would I have lower expectations for my heavenly Father?

God knows my frustration and pain. He’s there when I wake up at night because I stopped breathing. He knows when my saliva is drowning me and can see the muscles spasming around my ribcage like a band preventing the air from traveling where it needs to go. I know because when I can’t speak or move, He wakes up my husband and if he’s out working on his car then God sends my mom, dad, or brother into my room. He knew how long my husband and I could live on our own and He prepared us for when we needed to move in with my parents.  God can see my muscles twitching faster than I can figure out where the new pain is and He knows what days I will need more energy or encouragement before I do. People ask, "How can God let people suffer?" I just wonder how anyone can function without Him. 

ALS involves constantly facing your new worst nightmare.  It means thinking of the worst possible outcome and then watching it come true. My mind constantly reminds me of my struggles but thankfully the Holy Spirit is there to provide counsel.  My body is pulling everything inward.  Gravity is not just making it difficult to walk, I’m no longer able to hold up my head, and the atrophy has created functional scoliosis contributing to my daily discomfort.  Eating is not just a workout to open and close my mouth but a struggle for coordination of my teeth and jaw.  My throat and heart work overtime, always inconsistent, continually spasming. Most actions require assistance; running the gamut of verbal requests (i.e. movement, nourishment, hygiene, etc) to nonverbal assistance (i.e. choking, hair in my mouth, or other urgent, rapidly needed assistance). None of which includes any relationship nourishing conversation. It is not just exhausting for me but for everyone who has to help me everyday.  It is endlessly overwhelming. Thankfully, “we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do” (Ephesians 2:10).  So, in July 2022, when the majority of people could not understand me, I got a Tobii Dynavox eye gaze communication system; and when I went on disability, it perfectly coincided with my beautiful first godson's birth in August.  My sister came over and let me hold him while I was on the phone dealing with all the many barriers to going on disability.   My father and mother retired recently; now we all get to spend more time with Seth and Kai. I really miss working but I am so thankful for the blessing of  time with my two godsons. It is impossible not to feel joy with those beautiful boys. 

Since they're surrounded by adaptation, my uniqueness is commonplace for Seth and baby Kai. At 3 years old, Seth's already a pro at helping move my wheelchairs from room to room, and we love watching Bible stories together on my tobii. One Monday I was shaking a lot; so, Seth matter of factly put pressure on both my feet, effectively stopping the spasm. By 6 months, Kai already made my tobii track his eyes instead of mine. Now at 20 months, Kai’s always trying to understand the mechanics of my devices, he even put back together the stair chair (that he’d taken apart…) which is why I fully expect both to lead the way with innovation. 

While at our annual retreat in September 2023, I realized that many of our mothers with ALS were struggling to explain their degeneration to their children. I thought a book could give them a framework to show their children how to interact with them and to give them examples for how to continue enjoying interacting with one another. Kids are super creative and resilient, we just have to show them and they make incredible mirrors. So, I wrote a children’s book September of 2023; and an amazingly talented friend of mine, Ashley Kanoc, is working on illustrations. Ephesians 3:20 says, “God is able to do much more than we ask or think through His power working in us.”  I'm hopeful that this will be another avenue where I can be of help. 

Seth at almost 4, already asks the best questions. With the innocence of youth, he's not worried about what is considered 'normal.'  So, when I get stuck, almost driving into a wall, adjusting to my new wheelchair- he's the first one to ask, "What happened Tia Kait?"  Or if I look uncomfortable, he very sweetly tells grandma, "Tia Kait needs medicine."  When Seth was younger, he thought my clonus was dancing- so whenever I started to shake, he'd say, 'Tia Kait' s dancing!' and start dancing along. Now, he'll literally push both my knees down to break the spasm. Kai used to grab hold of my knees and enjoy the ride- cracking up because he thought I was purposefully helping him bounce; but now he very responsibly runs right over to do his job of helping with my feet. They're a constant reminder of the blessings of childlike joy!  Seeing the world through their eyes is such a blessing. The other day mom and gab were talking about me in the other room, and Seth just said, "Jesus is taking care of Tia Kait." We all need a helping of THAT childlike faith!

ALS is a constant exercise in humility. At this point in time I need assistance with many basic tasks. I have watched myself lose the ability to run, walk, cut my food, dress myself, bathe myself, and speak in the way that I have my entire life. I can no longer drink and am unable to eat enough to sustain myself; so, in  July 2024, I got a feeding tube further changing this body from the one I see in my mind’s eye as me. Through the help of brilliant family and friends, I am still able to communicate, though I am no longer able to work full time as a psychologist. We still need support each time we go to a doctor’s appointment. Even though the ALS clinic works to combine multiple therapists into one day, they are not in the business of giving hope. Unfortunately, they do not have proactive, functional suggestions to improve my daily life. For years my insurance has denied OT, PT, and Speech services even though these have shown to maintain functionality. Aetna kept saying that they do not need to provide anything that will not make me “better.” Since ALS is a terminal illness, that led to zero services.  Now we are navigating the new world of Medicare where medication that used to cost $240 a year will be over $4,000 for the year.  That is the medication that is approved.   I don’t understand how this system of inequality could be in place, but I am continuously blown away by amazing people and organizations who willingly step into that gap.  

“Be truly glad there is wonderful joy ahead (1 Peter 1:6).” My family and friends have worked to continuously come up with new suggestions that, while not technically a part of “the ALS treatment protocol” have greatly improved my quality of life. Many of our friends have stepped into the gap by offering their assistance. Their invested, empathic knowledge has gone a long way to giving us hope and more functional tools. Basic things have been literal lifesavers: the chiropractor and massages, especially cupping, and my epic massage chair (helps to decrease muscle spasms, facilitate circulation, release toxins), my sleep number bed (helps with movement, circulation, and decreases the amount of pillows I need from 5 plus a 7-inch wedge to just 1 pillow), pillows for my heels (help me keep sleeping without waking up from heel pain), Tobii Dynavox eye gaze communication system (allows my eyes to communicate without the hindrance of my speech), the perfect lift (allows me to get in and out of inaccessible areas), my bluereo electric suction toothbrush and liquid toothpaste (mitigate choking and gagging), a titling shower chair (provides safety), caffeine and a vitamin regimen-specifically B12 and Lion’s Mane (provide much needed energy), essential oil humidifier with peppermint oil (loosens my breathing), sage and yarrow tinctures (decrease my ever increasing saliva), gel manicures (provide increased strength for my fingertips), lightweight hand/wrist support and Oval-8 (help me to keep my hand open and  fingers outstretched), good sleep hygiene (a routinized 10-12 hours is now a necessity), passive stretching (helps mitigate my nerve pain and maintains more range of motion), shoes from Billy Footwear (alleviates stress for whoever is helping me, speeds up the process, and negates any shoving/pushing of my feet), and use of a bidet (provides a semblance of independence). These are all things that I wish I had known when I was first diagnosed. Now that I do, I am hopeful that other people can make use of what has been helpful to me and that I can benefit from their hard earned knowledge as well. Please if you or a loved one has questions- let me know!  Anytime someone can make use of my history it helps me to see how it all has a purpose. 

“Then the Lord said, ‘Pick up your mat and walk.” John 5:8. I have not been healed yet. However, one of the horrors of this disease is that once you lose something you should not be able to get it back; repeatedly, I’ve been told “you cannot regain abilities that have been lost.” Here are some of the miracles that we have seen. For two years I was unable to drink water, it made me choke and struggle to breathe, but somehow, since October 2018 I started craving water and was finally able to drink it. June 2018, I lost the capacity to walk independently in the pool. Miraculously, in late October 2018 I was once again able to walk unassisted for my pool workouts. During the pandemic, with 10 months out of the water, I lost this again but after a few weeks of practice the ability came back. As of July 2018, I was no longer able to stand on my own, but somehow, as of December 2018 I have been able to stand on my own for a couple of minutes at a time (all while people are standing close by watching of course).  Even though I can no longer stand up independently from a seated position, February 2019 I was able to stand up from my chairlift unassisted on multiple occasions. I don’t even remember when I lost the ability to walk on land (with a LOT of help from my brother and dad) but, miraculously, in February 2025 I knew that I could again and I did! This doesn’t mean that I always can, it’s just a reminder that God is working. This past fall, I’ve been able to lower my head more while sleeping and cough farther. My breathing is still too low to be measured by my pulmonologist, but any tangible improvement is incredible. We are in constant expectation of the next miracle and whenever I falter we’re repeatedly bolstered!

Compassionate Care for ALS (CCALS), Bridging Voices, Her ALS Story, ALS Family of Faith, ALS Ride for Life, and ALS United Mid-Atlantic do so much to alleviate the stress associated with ALS.  The individuals in these organizations are continuously working to facilitate life for those of us bending under the weight of ALS. Right when I started thinking that no one could understand what we were going through, in April 2021, Leah Stavenhagen started Her ALS Story which connected me to a wonderful group of women who are all going through the same thing. Leah drastically changed my experience of living life with ALS. She created a beautiful community to combat the overwhelming isolation imposed by ALS and she did it with style. I really can't imagine a world without her. I don't want to... events can't help but be less- of course, the downside to befriending us is the horrific reality of the rapid progression of ALS.  Accordingly, we have already had to mourn the loss of too many wonderful members Including our incredible founder, Leah, on Thursday, February 19th, 2026.  Hebrews 11:1 says, “Faith is being sure of what you hope for and certain of what you do not see.” As I have become more ingrained in this community, I have seen so much devastating loss that I need to believe we will one day find a cure. I hope we ALL desperately want a cure.  

Thankfully, Leah’s legacy of Her ALS Story has changed what it means to be a young woman diagnosed with ALS. We’re still rare (good thing because no one wants this epidemic), but we’re much easier to find. For anyone receiving a terminal diagnosis- that lifeline is game changing. Not only are the women hilarious but we are a fount of information for one another. It is a Godsend to have something positive and productive to focus on.  This past August, Jon and I were blessed to be able to attend the annual Her ALS Story Retreat again, along with 35 other women also diagnosed with ALS before their 35th birthday. It was such a unique relief to be surrounded by people who understand what our daily life entails.  For those of us who survive through next August, we can look forward to gathering again, and remembering the lovely ladies we’ve lost. All of whom enriched our lives by their presence.

It is still an effort to go out in public, beyond my close circle of friends and family, because navigating a world that is often inaccessible is frustrating and exhausting. It is uncomfortable to be unable to go into a building or to have everyone need to move to make space for your wheelchair to fit. People are irritated when the wheelchair has to be in front of them in the designated accessible seating and often are angry when I go by as though I may run into them. It’s frustrating seeing the faces people make when they hear my speech and it’s even more difficult to get sound out with my head turned. The weight of my head makes something as minute as turning back to the tobii a workout. Many people are wonderful encouragers but still others can’t help but show their pity as I pass by. They talk to me in baby voices as though I cannot understand them or assume that I am unable to talk and ask questions about me to whomever I am with. Honestly, I’m getting used to it. I talk a lot less now.  My personality hasn’t changed but it is basic triage. The muscles in my face aren’t just twitching. They are pulling down, knotting, and solidifying, combined with increasingly slow response times, sometimes I feel like my thoughts are being pulled into quicksand. It is not just hard to speak, chew, and smile. Rather, it’s exhausting- like a fight for each micro muscle movement. I share because I feel like God wants me to tell about the miracles He has provided for my family, rather than focusing on the shame and frustration fostered by this disease.

Isaiah 26:3 "You will keep in perfect peace those whose minds are steadfast because they trust in you." At times, when I am extra tired and struggle even more my mother reminds me that faith can come from your family and your friends. That God put them in place for us to help, so they can lift us here when we can’t feel His hands reach. One concrete example of this is in Luke when the paralyzed man’s friends literally lowered him down through the roof so that Jesus could reach him to be healed; “Then he said to him, "Rise and go; your faith has made you well (Luke 17:19)." I am so blessed with a wonderful husband, amazing family and friends- who are my feet when I can’t walk, my hands when they fail me, and provide me sustenance when I am weak. My life, like this walk, has become much more of a team effort. Like a child, I need to arrange for a family member to take me to and from each of my daily appointments.  My husband and I were blessed that when we needed more help we were able to move in with my parents and my brotherJanuary of 2019. Everything requires a lot of hands now. They have all taken on the task of helping with the minutiae involved in the movement of daily tasks. In doing so, each continually relinquishes their hold on time being their own, but rather a collective commodity we all sacrifice for each other daily. My husband didn’t just carry me over the threshold; he always picks me up and brings me up and down steps, over grass and snow, in and out of inaccessible buildings, even on and off roller coasters; and thank goodness he’s never needed much sleep because he constantly helps me to survive when my saliva tries to drown me under cover of the night. I’m continually blessed by the incredible gentleness, strength, and problem solving skill of my beautiful baby brother. I’m also grateful every morning for the way my parents graciously give each day of their retirement to joyfully take care of me. Doing my hair or makeup is now a group activity- and I’m blessed that my sister is expert enough to do them for us both. My aunt and college roommate have both become specialists in researching and pinpointing suggestions that provide hope that my energy and functionality can be maintained. Our amazing friend, Rachel, has given me her Tuesdays to laugh, reorganize my life, and provide a day of freedom for both me and my family. My father-in-law has taken on the complex task of dealing with my many mechanical issues. Some of our family friends and champions, Mike & Jen Lotito, purchased a wheelchair accessible van so that I can continue to access the world with less stress on my family. My friends have all become advocates, ensuring that businesses are accessible and that I can continue to do many of the things that they do. We have an entire prayer team dedicating time in which people volunteer to pray for me and my family on a monthly basis. We feel the power that comes from those prayers. So many people are already a part of this team.

I have been truly blessed by my family, my friends, my church, and the ALS United Mid-Atlantic (formerly ALS Association Greater Philadelphia Chapter). March 2025 they sent me an amazing tilting shower chair when I thought showering had become too dangerous, and previously they loaned me a motorized wheelchair for the year it took to get my own. ALS Mid-Atlantic is continually creating events to support families bending under the immense weight of ALS; they also are willing to partner with other organizations like Her ALS Story, to make the most of our resources.  Jon and I are a part of a wonderful support group through the ALS Association which provides a much needed reminder that ALS does not just impact us. Our team “A Cure for Kait” will be a part of the Seaside Walk to Defeat ALS on May  2, 2026 and we would be honored if you want to walk, donate, or be a part of it in any way. Together we’ve raised $142,537.70 over the course of 8 walks. This money goes to ALS United Mid-Atlantic  (formerly ALS Association Greater Philadelphia Chapter) who use it for research to find a cure for this devastating disease, as well as supporting families that are struggling with it right now. Please feel free to join, share, and make an impact. Let’s end ALS.