Leah
Diagnosed at 27

Gwen
Diagnosed at 32

Desi
Diagnosed at 28

Alexandra

In early August of 2019, at age 27, I started to notice a slurring in my speech and a sluggishness in my tongue. I described it as a feeling of “marbles in my mouth.” Others around me, even my then-fiancé, Joe, said they didn’t notice any difference in my speech. But I was sure something was wrong. A neurologist I saw in fall of 2019 ordered an MRI. When it came back normal, she said not to worry and sent me on my way. By that time, I was also experiencing some stiffness in my left leg, and I had an unexplained fall in the house. But it wasn’t until Christmastime when a nurse friend, home for the holidays, told me I should get a second opinion. I went with my fiancé to a different neurologist on January 17, 2020, an appointment that changed my life forever.

The neurologist immediately connected my slowed speech, leg pain, normal MRI, and lack of any other symptoms like trauma or disease. He gave me a preliminary diagnosis of what he called a “progressive neuromuscular disorder.” As a previously healthy 28 year old, I had really never considered that phrase before. What did it mean for my condition to be progressive? He told me some further testing would be needed, and that it would be best not to worry in the meantime. Of course, over the panicked next hours and days, it was all we could do to keep from Googling or WebMD’ing my symptoms and the medical jargon the doctor had used. My husband tried to insulate me from any research, or questions from family, about my tentative diagnosis. All we could do was hope that whatever the neurological and blood tests showed, it wasn’t ALS.

Over the next several months, I lived in a bizarre medical limbo. Doctors don’t like to formally diagnose neuromuscular disorders until months or even years after the onset of symptoms, allowing them to rule out other diagnoses in the meantime. The most anyone could say was that my loss of function in my tongue and mouth, and the stiffness in my leg, would continue and progress to other parts of my body. How quickly was anyone’s guess.

In July 2020, two months before my wedding, the results from an electromyogram, or EMG - a test of how well the nerves conduct electrical signals - provided my doctors with enough evidence to make a diagnosis of ALS. After a year of wondering what was wrong with me and what my life was going to look like, I finally had my answer. While I left that appointment in tears, I felt strangely relieved. The thing I was fighting finally had a name.

Now, almost two years after the onset of my symptoms, I have trouble walking long distances and rely on a walker outside the house. I can make myself understood when speaking, but I talk much more slowly and sometimes feel out of breath. Talking on the phone for a long time can be physically exhausting for me. At some point, I will need to start using a wheelchair and will need to rely on assistive technology to help me type and speak. But for now, I work full time. I drive, I swim and do physical therapy, I run errands, and I visit family and friends. I help take care of our two dogs and two cats (and, recently, six cats I fostered through a local rescue). I just completed a six month trial of an experimental drug (one of several) that researchers hope will be effective at slowing ALS’s symptoms, and am hoping to participate in another trial.

While my story is similar to many others, I have had one constant that not all of my peers with ALS share. Ever since my diagnosis, I’ve received complete and unconditional support from a strong network of colleagues, family, and friends.

Sarah
Diagnosed at 26

Monique
Diagnosed at 32

Kate
Diagnosed at 32

Angelina
Diagnosed at 29

Leah

During the spring of 2018, I began waking up in the middle of the night with leg cramps. Being 25, I joked to friends that I felt like my grandmother. I didn’t think too much of it but began taking magnesium supplements. Summer came and went. I ran through the streets of Paris celebrating when France won the World Cup. I completed my summer internship and prepared for the final year of my Master’s degree.

By the time Christmas came along, I had tripped and fallen a few times. I found myself being passed on the sidewalk by people I normally would have sped in front of. Something was off so I visited my doctor and explained that my situation did not make sense to me. I was an active 26-year-old so why did I feel like my feet couldn’t quite keep up? She couldn’t find my knee-jerk reflex and suggested that I visit a neurologist. Naively, I didn’t understand why I was being referred to a neurologist over a podiatrist. This quickly changed. I learned that I likely had ALS and a 2-5 year life expectancy.

Over the next few months, I would consult specialists in Paris, New York and Ann Arbor and spend hours on the phone making appointments. Sometimes brought to tears by feelings of utter desperation. I needed answers but couldn’t get them. I slowly stopped going to the gym. Yoga at home seemed safer.

Everything had changed but I wasn’t ready to accept that reality. During the next five months, I traveled to New York, Germany, Switzerland, Turkey, Croatia and Northern Michigan. I attended a music festival, finished my thesis and graduated from my Master’s program. I was doing my best to ignore the immense ALS raincloud that was hovering above. Between trips abroad, I stayed overnight at the hospital four times–to expedite myriad tests and complete immunoglobulin infusions. I could never fully escape the storm.

In September, I began working as a management consultant. Any fears of beginning a career in a demanding field, working entirely in a foreign language, were dwarfed by those of losing control of my body. Following orientation, I was immediately put on a project on the other side of Paris. The commute was a direct, 45-minute metro ride from my apartment but my days of using stairs were quickly coming to an end. Rather than ask for special accommodations, I would spend two hours taking three different buses both to and from the office. When I was lucky, my boyfriend would escort me on the back of his moto. As the weather got colder and my legs weaker, I swallowed my pride and told my manager that the commute was too tiring. I became an extremely loyal Uber client.

In December, about nine months after learning that I likely had ALS, I received a diagnosis to confirm the prognosis. The official diagnosis was primarily to facilitate paperwork. By then, I was beginning to feel my autonomy slip away. As Covid-19 began to force us indoors, ALS forced me to accept the use of a wheelchair. From home, I readily worked on proposals and discussed future plans with colleagues but, in the back of my head, knew that I would no longer be working by the time they came to fruition. Early summer, I took medical leave.

ALS is a formidable deluge, progressively taking away independence and thrusting one far from their comfort zone. I have had to learn how to ask for help and how to accept it. How to live in the now and concentrate on those I’m with. How to rethink my definition of success and what I want from life. Today, I have moved back to the States to receive a novel treatment at Columbia Medical Center and be closer to family. I have married my fiercely loyal boyfriend of 6+ years. I have never felt more loved, more fortunate and more hopeful.

Mira
Diagnosed at 24

Alyssa
Diagnosed at 27

Michele
Diagnosed at 32

Sunny
Diagnosed at 27

Ashley
Diagnosed at 25

Jamie
Diagnosed at 33

Teri

At 35 and newly married, enjoying my flourishing career as a psychotherapist and comforting path as a Buddhist practitioner, I thought I had arrived at the satisfied life I’d long wished for. But once diagnosed with ALS and told to get my affairs in order before facing total paralysis, I found myself pertly booted off all lofty perches of personal achievement and easy equanimity. In the months that follow, with my husband by my side, I set out in dizzying pursuit of an unlikely cure, traveling deeper into the byzantine landscapes of modern medicine and questionable promises of alternative healing. Grounded by skepticism as my disability grew, I attempted to court an elusive faith in a miraculous recovery while knocking ever-louder at the door of my own knowing. I won’t lie; my journey with ALS has been harrowing. I never imagined becoming trapped in my own body in this way, and especially with a condition that Western medicine seems to have scant interest in actively battling. Yet even though I haven’t found a miraculous physical recovery, this illness–along with the support of my husband, family, and community–has taught me how to be strong and persevere, and challenged me to cultivate gratitude in simple joys I once took for granted. What’s more, having to retire at 36 allowed me time to reunite with my love for writing, a practice I had largely given up once I finished graduate school. In 2019 I began writing a memoir on finding resilience. Since I was largely paralyzed when I began, I ended up writing 90% of it with my eyes with the help of my eyegaze computer. It feels like a huge accomplishment to have completed the project within two years, and as of November 2020, No Pressure, No Diamonds: Mining for Gifts in Illness and Loss is published and widely available. https://www.teridillion.com/book.html

In the story I tell, I reclaim the mysteries of grace while gently reminding readers of the fragile blessings of embodiment. I explore whether the most brilliant jewels of healing and meaning can be found not in conventional narratives of triumphant recovery, but in what we painstakingly and lovingly carve for ourselves out of life’s roughest blows. It’s been such a delight to already have people throughout the US and beyond, with ALS or never having heard of ALS, track me down to tell me how much the book has helped them.

Another unexpected joy of this incredible challenge I’ve been entrusted with. I’d like nothing more than to raise public awareness of ALS. This wicked illness has remained underaddressed and underfunded for too long. For the sake of everyone who’s already been devastated by it, and everyone who could someday be touched by it–which is, frankly, anyone–we can’t move fast enough in finding answers. I’m so heartened by the good work of I Am ALS and similar initiatives working to ensure the eventual restoration of health and independence so many of us long for.

Theresa
Diagnosed at 33

Sally
Diagnosed at 32

Asia
Diagnosed at 26

Cari
Diagnosed at 28

Jessi
Diagnosed at 25

Laura
Diagnosed at 32

Laura

I'm 33 year old mother and teacher in Ohio. Around November/December 2021, I noticed my jaw was really tight and I couldn't belt out songs in the car as easily as normal. My voice was hoarser than usual too, which I chalked up to being a first year teacher and being unused to speaking loudly for 7+ hours a day. Then I started choking on liquids more frequently, and occasionally having difficulty saying random words or phrases. During those times, to me it sounded like I had hearing loss. Others said I sounded as though I was super congested.

During the spring of 2022, I choked more and more. The scariest moments were when I choked so hard I literally couldn't breathe, and when I woke up choking. My speech was also fluctuating more regularly. That summer, my family urged me to get checked out before continuing into the new school year. My doctor only seemed concerned with my choking, though it was my speech that bothered me more. She scheduled 2 swallow studies. The first went off without a hitch, but the second included a scope which caught my timing error while swallowing. She also discovered I had constant tongue tremors. With that information, I was sent to a local neurologist. Around that time, I also started a new school year. I was hoarse daily, now occasionally having my words almost break off as I was speaking. My students originally thought I had an accent, but I let them know what was going on, even having mini science lessons on swallow studies 😆 I also began to notice that I'd get out of breath very easily, and it took a lot of effort to blow the whistle at recess.

When I met with the local neurologist, he assured me that I was probably fine, that I probably had spasmodic dysphonia brought on by stress. He continued with bloodwork, an MRI, and an EMG. He called with my EMG results on a Friday early in October 2022...on a day his office was closed, and from his personal cell phone. Dun dun dun... He said I had rare nerve damage, and that we needed to take the next steps. He was sending me to a neuromuscular clinic at OSU, and he wanted me to stop working.

Upon seeing the next-level neurologist, he confirmed my worst fears- I had bulbar-onset ALS.

Though this past year and a half have brought heartbreak and sorrow, they've also been filled with such love and hope. My silver lining has been rediscovering the love I have for the people in my life, and the love I have for life. ALS is my constant reminder to fully live in the moment, and to treat myself, even if the moment and the treat is a nap. 💜

Lindsay
Diagnosed at 31

Nicole
Diagnosed at 32

Sam
Diagnosed at 25

Chiara
Diagnosed at 34

Chiara

My name is Chiara Marcucci. I’m from the city of Latina in Italy; I’m thirty-four and have been living with ALS for the past eighteen months.

Before the symptoms of the disease began to make their appearance, I used to be active (I daresay hyperactive) and carefree. I was a sports enthusiast – especially fond of Pilates and jogging outdoors. I also basked in the joys of motherhood, on a daily basis.

I felt the early symptoms of the disease precisely during one of my Pilates sessions. Right from the very start, I sensed that the pain I was feeling was not some fleeting discomfort, but the sign that something more serious was coming into the picture. Time, unfortunately, proved me right.

Soon my daily routine included a series of going back and forth to the hospital, enduring long medical examinations that were preceded and followed by interminable waiting. I went through all of this without anyone actually telling me exactly what was going on. I felt as if I was living a nightmare and it was impossible to wake myself up.

Following eight exhausting months of experiencing the unknown, silence and half-truths – I was served the distressing verdict. I was initially incredulous and shocked, then went from refusing the diagnosis to gaining a will to fight. I do my best to be strong for my son’s sake since he considers me a sort of “Wonder Woman”. I simply cannot disappoint him.

But my life and my concept of what is normal have changed dramatically. My day-to-day schedule is marked by continuous medical treatments. It’s impossible to keep from noticing how people perceive me. I notice it by the way they stare at me when I come across them in the street. I can imagine what they’re thinking as they watch my faltering footsteps. And now that my repeated falls have forced me (against my own will) to resort to a wheelchair, their curious gazes have become all the more persistent.

I increasingly have to ask for help, even for simple things like getting into my clothes. It’s hard for me to accept the fact that I can’t participate in my son’s activities as much as I used to. I can no longer take him to school or play with him in the park. I was planning to continue working, although it was proving to be more and more difficult for me. In any case, I recently quit my job so that I could undergo experimental treatment.

These cold winter days keep me from going outside as much as I would like to – and this saddens me. But I’m doing my best to organize regular get-togethers for lunch or dinner with close friends. I can sense that my physical conditions are gradually going downhill, but I am aware of the fact that I have no choice and all I can do is accept the change.

I’ve learned that I have to reconcile with the sudden changes that my body is subjected to and I have planned my tomorrow. For the sake of my son. And this provides me with peace of mind.

Jayme
Diagnosed at 33

Jenny
Diagnosed at 35

Leah W.
Diagnosed at 31

Katherine
Diagnosed at 31

Macey
Diagnosed at 28

Ana
Diagnosed at 32

Jayme

I was given the official diagnosis of ALS in February 2022. ALS is a neuromuscular disorder that causes muscle weakness and wasting that unfortunately doesn’t have a cure as of now, and ultimately is a terminal disease.

Short version of what happened…..I started having minor muscle weakness in my right hand in 2017 while I was pregnant with my son and saw my first doctor in April 2018. At first, we thought it was just carpal tunnel issues, so I had surgery later that year. In 2019, I had Ulnar nerve release surgery after the weakness continued and I started losing the ability to move my fingers in some ways. In 2020, I was referred to see a neurologist in New Orleans due to things continuing to progress and for the first time ALS was thrown on the table but wasn’t likely because I didn’t “fit the normal presentation." After 3 EMGs, an enormous amount of blood tests/CTs/MRIs, and a surgical muscle biopsy from my bicep, my husband Kenny and I took an 8 day trip to Minnesota to visit the Mayo Clinic in September 2021. Further testing and evaluations were done, including a spinal tap, and we left being told they couldn’t “officially diagnose” me with ALS but did believe it was more of a matter of when I would be able to be diagnosed than if. After returning home, I started going to an ALS clinic for monitoring every 3 months, but after 3 visits and a bunch of nonsense, I decided to bring my care back to my home town and now have an AMAZING group of providers taking care of me! Thankfully I have a ‘slow progressing form’ of ALS and have been able to remain independent for the most part and work full-time. I am an RN and worked at the bedside for 10 years before I unfortunately had to step down due to not being able to perform fine motor tasks required. In June 2021, I transferred to the clinical education department at the hospital I work at and have luckily been able to continue to work in my field as a nurse educator. There are alot of things I need help doing, but I am blessed with the best husband, family, friends, and co-workers that make life a lot easier!

After getting the diagnosis we decided right then and there that we were going to continue living our lives day by day and appreciating every minute of it! I am a mother of two incredible kids, Riley and Wyatt, that help me every day with the tasks I can no longer do alone, but most importantly they give me a huge reason to keep my head high and make every moment count!!! #NoWhiteFlags #TeamGleason #notgivingup #fuckals

Tina
Diagnosed at 38

Kaitlin
Diagnosed at 29

Sally

Hi, I’m Sally. I’m 33 years old and I live in Denver, Colorado.

I was diagnosed with ALS in September 2019. At that time, I was living in the Upper East Side of Manhattan in a 6th-floor walk-up apartment building. The symptoms began subtly in fall of 2018. I noticed I was becoming unusually fatigued at spin class, and I couldn’t run as quickly as expected. I thought I was just out of shape and needed to go to the gym more often to build up my endurance. Walking up the stairs to my apartment became steadily more difficult as fall turned into winter.

In December of 2018, I purchased a pair of new boots and noticed I was constantly tripping on my left foot. Soon after, my pace became slower and required more work to keep up with the fast walkers of New York City. One afternoon, I was trying to make the train to work, and slipped on the stairs down to the train platform and was overwhelmed with dread that something was terribly wrong. I noticed right after that my reflexes were extremely jumpy and overactive. I made an appointment with my local physician for the following week.

The doctor did a physical exam, and confirmed the extremely overactive and unusual reflex responses. He recommended I see a neurologist immediately.

At this point, I was noticing intense cramping in my calves in the middle of the night and twitching all throughout my legs.

I eventually saw four different neurologists over the course of 6 months of a plethora of tests and appointments. After my second EMG, ALS was mentioned as a possibility. Finally, I spoke to one of the top neurologists at Columbia University and she confirmed through a process of elimination that I had ALS.

I eventually was unable to continue working in my field (as a sommelier at a fine dining restaurant in Manhattan). The guests I was serving would notice my struggle walking, and would ask if I injured my leg or something of the sort. After a couple of months of dealing with all the emotional and physical tolls, I retreated to my apartment (with an elevator) and became a recluse for the next 3 months.

Navigating the financial requirements, treatment options and clinical trials was the most aggravating and depressing thing to have to do as someone already so emotionally taxed with a terminal disease diagnosis.

I decided to move to Denver in July of 2020, after Covid 19 presented an unusual opportunity for change. Together with my partner of 7 years, we opened up Denver Wine Merchant. I’ve chosen to pursue my dream and create the best wine experience possible.

I refuse to believe this cruel and misunderstood disease is just bad luck. I manage my progression with belief that I can beat this awful fate, and staying busy doing what I love has been therapeutic in and of itself.

Kaitlin

“When you’ve done everything you can do, that’s when God will step in and do what you can’t do.” 2 Corinthians 12:10

The year I turned 28, I got engaged to a wonderful man and completed my doctorate in psychology. Everything that I had dreamed for myself was coming true. The day after my 29th birthday, a month before my wedding, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS), and everything changed.

I was always active. Volleyball, kickboxing, yoga, and soccer were all great but I really loved to run. I ran with my mom, my sister, brother, father, and eventually my fiancé; and it provided time outdoors to get out all of that extra energy and just enjoy God’s creation. In January 2016, I started to have difficulty running. Running was always easy and that winter suddenly it wasn’t anymore. I didn’t understand how it could change. I couldn’t seem to stop my own impact, my feet hit the ground too hard, and it felt like I was continuously off balance. Then I started to actually fall. In the beginning I could catch myself, and then I couldn’t anymore. People kept telling me to just shake it off or that it was all in my head. I hoped it was but couldn’t seem to fix it on my own. So I went to the foot doctor. That seemed like the logical starting place since my feet appeared to be failing me.

Around the same time, I started falling from a standing position. When I went to the foot doctor, she asked about other falls and recommended that I see a physical therapist. Unfortunately, as the physical therapist worked with me, instead of getting more balanced I seemed to be getting worse. I went from not being able to run to having difficulty just being able to walk. As the drills showed less progress and more digression, my physical therapist recommended I make an appointment with a neurologist.

The first neurologist that I met with was brusque but relatively informative. During my initial appointment, he did a sensory checkup that I would soon learn would be done each time I met with a new doctor. This consists of checking my reflexes, ability to track with my eyes and hands, and an assessment of my sensation. This particular doctor pulled his keys out of his pocket and used those to scratch the bottom of my feet to see if I could feel it. I could. It hurt. When he then pulled a safety pin out of his pocket, to see if I could feel myself being poked, I tried to jump off of the table. Meeting with him was stressful. He was not in the business of giving hope. Nevertheless, he scheduled a series of MRIs.

During that time, my strength seemed to be getting worse, my balance increasingly off-kilter, and my walking more noticeably impaired. My mother attended all of the appointments with me, and after our first negative experience, my sister attended as well. Many of the doctors made jokes about how many of us were in the room. As psychologists, all three of us knew that under this type of pressure no one person could appropriately report the details that the professionals were saying. When they joked about my support system, I agreed and said that I brought a team of therapists with me which, luckily, I had. God gives all comfort and I know that “my God will supply every need” according to Philippians 4:19. That doesn’t mean that I don’t need reminders. For me, those reminders often came from my family. They had the ability to shore me up, help me to walk when I couldn’t, and help me to believe when I felt empty. Later, as I prayed to see God more, that comfort would come from even more people; but it always came from my family.

As my progression of negative symptoms accelerated, my family and I felt that we needed someone who could be more available and responsive to our concerns. In one of a series of blessings, a family friend reached out to a friend of hers, who was also a neurologist. Although 30 minutes farther away, this neurologist was much more responsive, empathic, and invested in explaining the minutia of each neurological test as well as all of the potential implications. Through her, over a month and a half, I ended up having an EMG, two spinal taps, and a spinal and cerebral test to look for an AVM which resulted in a week-long inpatient stay at Columbia University Medical Center. It was there, when an unknown doctor walked into the hospital room I shared with a stranger and told the room I was diagnosed with ALS. This doctor explained that there is no cure, no treatment, and that, if my diagnosis is correct, then there is no hope.

Each time we went to an appointment, we had to be reminded that “we live by faith, not by sight” 2 Corinthians 5:7. On June 20, 2017, my diagnosis was confirmed. 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.

“Don’t worry about anything, instead, pray about everything. Tell God what you need, and thank Him for all He has done.” Philippians 4:6-8. From a very realistic perspective, I need to work on conserving energy and appropriately using the energy that I have on a day-to-day basis. That said, I love to work. I spent years training for my career and my enjoyment of it did not change because of this diagnosis or these symptoms. I know that I may not always be able to work and that maybe what I do, or the ways that I do it, will have to change, but my goal is to work as hard as I can for as long as I am able to. Jerry West once said, “You can’t get much done in life if you only work on the days when you felt good” (Maxwell, J. C, 2011, p.137). That resonates with me. As tired as I often am, I know that in our world a lot of people are tired. I am often reminded that each day I have is an opportunity to keep working and to let myself be used by God. So I pray for opportunities and reminders to be able to pray for other people like I know they are praying for me.

To anyone reading this, my prayer for you is, “May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit” Romans 15:13. Two separate, highly known medical facilities diagnosed me with ALS. I was told that I had one to five years to live and I watched myself lose the ability to run, walk, cut my food, dress myself, bathe myself, and speak in the way that I have spoken my entire life. I have had to adapt a lot and along the way we have seen things that we can do. My brother explained it best with a story that he heard on the radio. ‘It was snowing and the custodian began shoveling the steps to the school. A student in a wheelchair came out and asked him when he would shovel the ramp so that she could go to school. He said that he had to do the steps first so the majority of kids could get in. She said if he did the ramp first then everyone could get in.’ To generate change society needs to learn that making things better for everyone includes each individual. We need to share our struggle in order to help facilitate physical adaptations to mitigate limitations.

My goal is to use every negative experience as an opportunity to see how to better help the system and to make accessibility the first thought rather than the second. In June of 2021, it will be 5 years since I was diagnosed with the death sentence that is ALS. Since most people with ALS pass away within 2 to 5 years of diagnosis this is yet another blessing amidst my daily miracles. Miraculously, I am still able to type, communicate, and work full time as a psychologist. It is a daily testament each time God helps me to move and to breathe. As I have become progressively more paralyzed, we have seen great strides in ALS research and I believe we will one day find a cure. Together we can continue to raise funds and provide tools to help others function to the best of their abilities until that cure arrives.

Blaine
Diagnosed at 38

Paula
Diagnosed at 34

Claudia

My name is Claudia Cominetti. I’m 44 and live in Arona, a pretty town on the shores of Lake Maggiore in Northern Italy. I was diagnosed with ALS in the late summer of 1997, when I was 20 years old. This fateful diagnosis was made after I had suffered the early symptoms of the disease such as exhaustion, weakness in the upper limbs and weight loss during the spring of that same year. These symptoms alarmed my family and me to the point of going in for some testing, but a diagnosis was not made at that stage.

However, going about my normal everyday activities was getting more and more problematic: turning keys in the lock, opening a bottle and combing my hair were becoming impossible tasks. The orthopaedist who had previously examined me suggested I see a neurologist; I was admitted to hospital, but without any particular outcome – only various assumptions that led to an ordeal involving additional tests and examinations.

The first certain diagnosis, albeit one made with a question mark considering my young age, was made by the Istituto Neurologico C. Besta di Milano in August 1997. I still remember the drawing that the neurologist made to explain what was happening to me. The full picture actually dawned on me only a few months later when I visited a leading centre for the treatment of ALS, where Dr. Mazzini, who is still my neurologist, prescribed further testing – ultimately confirming the diagnosis and short life expectancy. It came as a harsh blow for myself and my family, with them being bereaved for years; whereas I experienced disbelief and reacted through a sort of rebellion that led me into setting off on a battle that I am still engaging in.

The disease did not stop its course and inexorably continued its rapid progression: to the point that soon I was no longer able to take care of myself, but could only ask for help using my voice – something that I still do. The following spring, along with my mother and sister, we decided to set off on a trip that we had been dreaming of – to Mexico, destination Cancun, to the land of the Maya civilization. My legs were beginning to feel weak during that period; I fell repeatedly and this obliged me to move around on a wheelchair.

Our stay in a village in Playa del Carmen was only the first of a series of unforgettable holidays. Clearly, travelling has been a pleasant opportunity during all these years – one that was granted to me by ALS. In fact, my condition made it impossible for me to work and I interrupted my studies. My mother had to quit her job to take care of me, whereas my father had already retired and my sister was already married. In other words, our lives were turned upside-down in some way and we had to find another path in life.

Luckily we came upon extraordinary people along our way who (thanks to their perseverance, availability and kindness) learned to manage such a complicated situation together with us. First and foremost the gymnastics teacher who took care of me until his passing, helping me keep my joints and body free from stiffness due to atrophy, in addition to offering me his continuous moral support.

No less than my friend Samanta who has always been at my side, my companion at concerts, entertaining events, etc.; and all the many other people who come in succession during my life made up of highs and lows. The psychotherapy and educational support that accompanied me during that period allowed me to grow and discover that I am a woman who still has a lot to offer. So much so that at the age of 32, I decided to resume my studies in a new field, ultimately obtaining a degree in Pedagogical Advice for Disability and Marginalization – a fantastic experience that I hope will allow me to gain success and gratifications. All in all my young age, the support of my family and specialists have helped me in never giving up and considering a different lifestyle – a dignified one in any case.

To date, I am trying to set up an established career as a pedagogical consultant, with the aim of offering support to those in need. But travelling still stands as an important activity in my life: in addition to Italy, I’ve visited Africa various times (Sharm El Sheikh and Djerba), Europe (France, Spain and Greece), Asia (United Arab Emirates) and have also travelled to America (Santo Domingo and New York – my favourite city).

Mayuri
Diagnosed at 32

Andrea
Diagnosed at 33

Mira

I was diagnosed with ALS June 11th, 2021 when I was 24 years old.

It all started when my teacher pointed out how shaky my hands were. I was 15 at the time. I then went to my physician and she diagnosed me with a tremor. I then went about my life knowing I was always going to have shaky hands and thought nothing of it. Until a year or so later, I couldn't spray a perfume bottle with one finger anymore. That's when I was like, something is really wrong.

I went to two different neurologists, did MRI's, EMG's, blood tests, and many strength tests. They soon diagnosed me with SMA type 3. I believe I was 17. They told me I would lose the ability to walk by the time I was 20 or earlier. Because at the time I just had weaker hands, I went about my high school life pretending nothing was wrong. I worked two jobs, graduated high school, and moved away for college. I started going to school to be a therapist and worked on the side as a preschool/daycare assistant teacher. When I was about 19 years old, lifting kids and getting off the ground to chase them started getting much more difficult.

I decided I would go to physical therapy and see if they could help me slow the progression. That is when my physical therapist told me it's time to get a less physically demanding job, and also told me they came out with a new drug for SMA that is supposed to stop progression. I was so excited to receive this news, I remember crying with relief when I found out. After I went to my doctor to get started on treatment, they found out I didn't have the correct mutation for SMA type 3. I wasn't eligible for the medicine and, again, I was back into the undiagnosed world. That's when my doctor decided to run more tests and do a muscle biopsy from my left bicep. Although it was all for nothing and they still couldn't figure out what was wrong, they knew I was slowly losing muscle in my thighs, arms, hands, and shoulders.

I went undiagnosed for 5 years. I was so sick of losing muscle/ spending TONS of money on testing and my doctor saying there was nothing they could do. After seeing 3 neurologists, I decided I was going to go to the Mayo Clinic and see the top dogs of neurology. I flew to Arizona May of 2021 and spent four days doing, again, MRI's, EMGs, and blood tests. At this point, I had had four full-body EMG's in my lifetime and let me tell you one is enough to never want to do it again.

June 11th, 2021, on a Friday morning at age 24, I was diagnosed with ALS. The doctor said that it was slow for now, but could speed up, stop, or be slow consistently. I would never know and she had no idea when the changes would happen. I wallowed for a week or two. Once I started connecting with an ALS clinic and getting prescribed medicine for ALS, I felt a sense of relief. Knowing what was wrong with me didn't mean I was going to fall over dead tomorrow, but that I belong somewhere now. That I can plan, I can find support, and I can take medicine. My work (I worked and still work at a mortgage company) took the news extremely well and showed me so much support and kindness. After that, I felt this newfound mission to live my life. I bought a house, I got certified in foster care, and I planned a big national park bucket list road trip (which was absolutely incredible and my photo in Death Valley is my bio pic)!

Right now, I am working, I am still completely independent, and thriving the best I can under the circumstances I was given. I can still foster kids so I will keep doing it until I am too far progressed to do differently. I love reading, making candles, and spending time with my family/friends/pets!

I am SO happy to have found this group and found women who are in the same boat as me.

Kari
Diagnosed at 27

Allie
Diagnosed at 26

Gwen

You know you are getting old when…

You age out of an under 35 group. And a group that so many others simply don’t know exists: that is, people under 35 living with ALS. How many of you have heard, “But you’re too young to have ALS?” And that’s how my own diagnostic journey began—with a strong sense of doubt and unreality hanging over my experiences.

I was diagnosed with ALS at 32 years old, but the prior 1.5 years of misdiagnosis has been the hardest part of the ride. I spent that time bouncing between doctors’ appointments and consistently not being heard. I was listening to my body, but no one was listening to me. It was easier for doctors to call my experiences “anxiety” and prescribe medications. They weren’t recognizing and acknowledging the truth of how my early symptoms were manifesting. I was frustrated, to say the least.

At one point during this period, my psychiatrist let me know that he was preparing to leave his practice. He referred me to a colleague he thought “would be a good fit,” but he also cautioned me that this colleague might not be accepting new patients. I was thinking, “Am I going back to square one?” Fortunately, the referred doctor did accept me as a new patient and so I came under her care.

Our first meeting started out with a bang (pun intended) … with me being wheeled into her office. I had just fallen while getting in the elevator. With my compromised balance, when something shakes, it’s game over. Teary-eyed and completely embarrassed, I explained that falls like this were becoming second nature, in fact, I was experiencing so many of them that I’d begun keeping a log. My new doctor said, “Let’s go into the hallway. I’d like to watch you walk.” She followed close behind me, at one point taking my arm, as I demonstrated my shaky stride.

I sat down in one of her armchairs. She looked me in the eye, and the first thing she said was, “You don’t fall from anxiety.” Right then, I knew I was in the right place. Later in our conversation, she said she was going to refer me to a neurologist, and this put me on the path, finally, to getting real answers.

What I learned from this experience is that you have to persistently advocate for the truth of what your body is telling you, and keep telling that story. If the answers you get don’t seem right, they’re probably not right. It took 1.5 years for my condition to be accurately diagnosed, and if I had not persevered, I might still have been one of the undiagnosed “You’re too young to have ALS” cohort. As it is, I am living with ALS, it is real, and I am 35 years old and fighting strong.

And what does that fight look like now? I still have to advocate as hard as I can—both to try and get the critical therapies that I need, but also to advocate on behalf of the larger ALS community. Building awareness and understanding of ALS has become a passion of mine and I volunteer in many ways so young(ish) people like myself won’t have to explain that, yes, young people can get ALS too.

Allie

Hello! I’m Allie Schmidt, and I’m a mom living with a rare form of ALS called brachial amyotrophic diplegia.

Since I was 25-years-old, my arms have become slowly paralyzed. Whether ALS will take over my whole body remains unknown.

The first sign that something was wrong was when my right pinky finger began extending far away from the rest of my hand. It also became harder to type at work.

I decided it was time to schedule an appointment with a GP about 1.5 years after my initial symptoms started. She then referred me to an orthopedic surgeon who said that I had severe atrophy in my right hand and that I needed to have surgery immediately. ⁣

The surgery only irritated my nerves and made my symptoms worse. I still didn't notice the weakness; I just knew that I was losing control of my motor skills. ⁣

A few months later, I saw a neurologist. During my first appointment, he told me there was virtually no way I had ALS because I was too young.

All of the MRIs and blood tests came back negative. However, the EMG was abnormal in both arms. My legs, back, and cheek were normal. Doctors think I either have brachial amyotrophic diplegia or early-onset ALS.

It's now been six years since the onset of my symptoms, and I haven’t received any further treatment or tests since 2018. It's incredibly discouraging going to doctors and hearing that there's nothing that they can do for you.

I can no longer drive and my daily care activities are severely affected by my disability. My arms are nearly completely paralyzed.

I’ve dedicated myself to ALS advocacy and created, Disability Dame, a blog for moms with chronic illness and disability.

While having ALS obviously has its ups and downs, overall, I have a beautiful life that I'm extremely grateful for. My husband and I still travel frequently, my baby boy is happy and healthy, and, I get to spend my time helping others.

https://www.disabilitydame.com/early-signs-of-als/

Teri
Diagnosed at 35

Sarah D.
Diagnosed at 39

Brooke

I was diagnosed with ALS this past March at the age of 33.

ALS, aka Lou Gehrig’s disease, is a progressive neurodegenerative disease. It has no cure and doctors give you 2-5 years to live after being diagnosed.

This all started four years ago when I developed weakness in my left foot, noticed by many colleagues as I limped my way to get my daily coffee.

After hundreds of tests, the less scary options were ruled out one by one, and I was left with a “wait and see if it progresses”. Earlier this year, I felt weakness in my right foot, and received a confirmed diagnosis.

I spent a couple months crying and shoveling M&Ms into my face before deciding to attack ALS head-on by driving awareness through social media. Through the support of my family, friends, and work, I've been able to laugh in the face of ALS.

Here’s a glimpse of what life looks like today:

- My symptoms remain in my legs and I feel very lucky to have slow progression. I walk with a cane or a walker, but will still hobble my way to the middle of the dance floor. My dog, Draymond, does not seem to notice the lessened mobility, and still drags me to the closest source of food on our walks.

- I just hit my six year Salesforce anniversary, now as a fully remote employee, and I’ve been in awe of their benefits as well as the kindness I’ve received from colleagues, partners, and customers.

- I go to an ALS clinic every three months to monitor my progression. It can be disheartening to be told things are getting worse each time, but my family takes me for pancakes afterwards and I forget pretty quickly.

- I'm now involved with Salesforce’s resource group for disabled employees, and they are spinning out a group specifically fighting ALS led by some incredible executives. I can’t wait to see what we’ll accomplish.

- I joined a group called Her ALS Story, made up of women diagnosed with ALS before their 35th birthdays. The group unfortunately continues to grow but it's the best club you never wanted to join. We just held our first retreat and seeing them fight is beyond inspiring.

- I regularly monitor new research being done for ALS. There is a lot of work being done, and I hope I’ll be given the chance to try anything that may help.

If you’d like to follow along my journey, you can follow me on instagram or TikTok at @LimpBroozkit, both linked below.

Don’t hesitate to reach out with questions or share my story. The more awareness we can drive, the better chance we have of ending ALS for good.

Thank you for reading,

Brooke aka Abraham Limpin

Kimberly
Diagnosed at 28

Brooke
Diagnosed at 33

Kimberly

My journey starts out like many others, prior to the end of 2019 I was a "normal" healthy young adult working in the medical field full-time and spending my free time with my boyfriend, riding mountain bikes, road cycling, hiking, and traveling at any opportunity I could. Towards the end of 2019 I started out having symptoms of what I thought was simply hypoglycemia--it started with shaky hands, sudden extremity weakness, facial flushing, brain fog, and feeling lightheaded/dizzy.

Over the next few months, I eventually got in to see an endocrinologist who did an extensive workup and said that I was having post prandial (post meal) hypoglycemia. I didn't think much of it, and eventually started on medication to help maintain a normal blood sugar level.

October 2021 hits and I had an emergent appendectomy which ended with severe urinary retention and doctors puzzled as to why I would be retaining so much urine unless there happened to be an underlying neurological issue that had yet to be discovered. This seemed to be one of the first turning points in my journey to ultimately being diagnosed with genetic ALS. My urologist was top notch, incredibly thorough, and asked if I'd be okay with him ordering MRI scans of my brain and spine. I agreed and was baffled when the results came back with two lesion like abnormalities on my brain stem.

Over the course of the next year, I was in and out of the hospital for symptoms of extremity weakness, shortness of breath, chronically low sodium/potassium, numbness and tingling from my knees down, livedo reticularis all over my entire body, marked dysphonia that would last for months on end and several other multi-systemic symptoms. No one could seem to find a unifying diagnosis that made sense of all of my symptoms. I had imaging, lumbar punctures, EMGs, nerve conduction testing, you name it, I had it done.

I eventually ended up traveling to see a neuromuscular specialist in NYC who would start to really dig a little deeper and also refer me to see a geneticist at Mount Sinai in the city. I ultimately had genetic testing done which revealed that I have an SQSTM1 gene mutation causing the genetic form of ALS and also Paget's disease of the bone, which would explain why my bones were so prone to breaking. It finally all came full circle. While I didn't think an ALS diagnosis was in the cards that were dealt to me, I was given a wild card and I'm ready to take on whatever comes in the future. Finally having a diagnosis has been relieving even though ALS isn't something my doctors ever imagined that I would be diagnosed with at the age of 28.

Amanda
Diagnosed at 27

Christina
Diagnosed at 22

Theresa

My journey to diagnosis has been a long and difficult one, like most ALS patients I am assuming. Nearly 3 years ago I had a nasty virus that caused a whole host of medical issues that my medical team thought were related to something autoimmune in nature. The telling sign was numbness and tingling on the left side of my face that extended into my chest, at that time I saw several different specialists and all my tests kept coming back as normal. Fast forward about six months I am back in the gym working out and my trainer noticed significant strength differences between my arms, I was much weaker on the left. I saw neurology who ordered more diagnostic testing, my first EMG, and was told I had a brachial plexus injury of some sort and to follow up, I didn’t. A few months later I developed significant atrophy to both of my hands that I attributed to cubital and carpal tunnel syndrome as I was sleeping in odd positions due to sciatica. last November I had back surgery and had a herniated disc removed that was encompassing my sciatic nerve. My pain improved immediately and so did my strength, until I was about six weeks out from surgery I started falling and was unable to get myself up when I fell. This got me thinking that something was going on so I went back to see neurology, someone I have been seeing on and off throughout the years for migraines and vague neurological complaints that I thought could possibly be multiple sclerosis. He did an EMG which showed signs of paralysis extending from my brachial region on my left arm down into my left toes. To this day I have not viewed my results but I am told they show signs of motor neuron disease but only at one level. The neurologist referred me to a neuromuscular specialist at University Hospital in Cleveland. They ordered a host of medical tests including MRI of brain and neck with and without contrast as well as referring me to a Nuro immunologist who performed A spinal tap. My MRI of my brain has changed considerably and showed hyperintensity flair 2 along bilateral sub cortical tracks, The radiologist mentioned that it looked like it could be ALS. The Nuro muscular specialist ended up diagnosing me with facial onset sensory motor neuropathy. They gave me three infusions of steroids over three days which helped my strength and balance considerably. But the improvement did not last long. By spring my voice and speech quality had changed and I developed Psudo bulbar affect. They decided to put me on high-dose steroids with a taper down and I did well until the taper I got weak again and started having weird rashes back as well as some other concerning autoimmune signs. My neuromuscular specialist had referred me to ALS clinic and I have been following up with them since May. For the longest time my ALS doctor had me diagnosed FOSMN vs ALS vs autoimmune disease. Mind you I had significant progression of weakness around June and had several nasty falls so I started using a cane which eventually led to a Rollator walker because I was still extremely unsteady with a cane. I was in physical and occupational therapy with ortho after my back surgery but this past summer it changed to neurological rehab and I added speech therapy.

ALS clinic thought it would be a good idea to get genetic testing. On Tuesday after waiting over two months for results I found out that I am +c9ORF72, so my diagnosis was changed to genetic ALS. They are going to stop the steroids, it’s too risky to remain on them.

I did go to Johns Hopkins for a second opinion in there ALS clinic back in September and they had diagnosed me with sporadic ALS. I was so angry but now I am happy I went because it opens me up to being a patient there meaning I am eligible for their clinical trials and they have many.

So it’s been a long road getting here. I was in complete denial until genetic testing came back. Now I t’s real, very real! I did get a great dane puppy, she is in a board and train program for 30 days to become my service dog.

Kim
Diagnosed at 35

Meghan
Diagnosed at 28

Madie
Diagnosed at 20

Claudia
Diagnosed at 20

Megs
Diagnosed at 35

Kaitlyne
Diagnosed at 29

Beth
Diagnosed at 25

Lauren
Diagnosed at 30

Kaitlyne

Here goes nothing, May of 2020, I was living my best life.. despite covid.

I had an amazing job, great place, hiking, getting involved in community sports and was finally able to save enough money to get a passport and start saving the be able to start traveling, and even looking into moving abroad.. which was always my dream Until, September 2020 when typing started to become an issue as well as writing, which was making it difficult for me to chart for my patients which was completely necessary as I worked in Mental Health

On December 31, 2020 I had my first EMG and a MRI… Later that day I got a call from the neurologist stating that my EMG that was abnormal and that I needed to come back in three months for another one. in March 2021 I got another EMG… this time the neurologist said “of course based on the damage progression we see to your Motor Neuron Nerves, ALS is our main focus, but we will do ANY testing to anything with remotely close symptoms to be sure” This was the first day I found out ALS was a possibility

My mom and I were shook. Didn’t only old men get ALS?

A week later I was getting 36 vials of blood drawn, did a 24 hour urinalysis,overnight oximetry, and a spinal tap Some of my fluids were sent to various states to check for different autoimmune diseases and Lyme May 2021.. the doctor confirms ALS and tells me the average I can be expected to live is 2-5 years and says I need to see a doctor every 3 months to monitor progression

In a single year, I went from having everything I wanted.. to being told I have an average life expectancy of 2-5 years and had progressed to the point I could no longer work.

Today, Im grateful to be alive and that my progression has been slower than some others I’ve met I’m so thankful to the community and having been apart of HerALSstory for the last year and a half, these women inspire me And I reminded of my favourite moto from high school “Whatever tomorrow brings I’ll be there, with open arms and open eyes”

Beth

Hi everyone!

My name is Beth Hebron, and I was diagnosed with ALS in 2013 when I was 25. At the time I was living in Washington, DC and working as a paralegal at a law firm pulling 80 hr weeks and spending my weekends bouncing from adult kick-ball leagues played on the mall to concerts at 9: 30 club and bar hopping with my friends on U street. Until one day when I started having weird symptoms pop up. The first time I knew something was wrong was on a snowboarding trip in 2012. I was with my family and so excited to be back on the mountain for the first time in a year but I knew the minute I put my boot on something was wrong but I didn’t know what. I nevertheless insisted I at least try to do a run since my family came all that way with me. But the minute I got off the lift I face planted into the snow bank and had to be helped back on the lift. I remember feeling so many things in that moment shame for bringing my family on a trip I could no longer participate in, embarrassment for my fall, confused as to why it happened in the first place and anger and sadness for despite not knowing the why of what was happening I knew I probably would never be back on that mountain snowboarding again. Once I came home I tried to bury the trauma of what was happening and go on as if nothing had happened. But things started going downhill fast. I began having trouble typing and writing at work and even answering the phone became difficult. Then came the constant assumptions by strangers and even friends that you’re drunk constantly, my mother insisting I have a cold when I know I don’t, bosses confused as to why your billable hours have gone down until finally you say to yourself maybe I should see a doctor.

In the fall of 2013 I finally went to a doctor at Georgetown University Hospital where I saw a freshly graduated resident who did a quick neuro exam with me before mysteriously vanishing into the hall. She later returned with her attending who booked me for an EMG. Now if you haven’t experienced one yourself I do not recommend it Here’s how I would describe it. It’s like acupuncture but not soothing or relaxing in fact I’m pretty sure shooting electricity into misfiring neurons should be outlawed by the Geneva Convention. A month later I finally had my wonderful ALS diagnosis. At first I largely lived in total denial of what ALS meant for me, my life-style and my family. I stayed in DC working through the first year thinking I could simply adapt and overcome any challenge I met with ingenuity and creativity. I had button loops, zipper pulls, leg splints, any and every adaptive hand tool out there you name it I tried it. But ultimately I couldn’t keep up at work and started falling more and more so by year 2 I begrudgingly moved home with my parents in Maplewood, NJ. It was brutal admitting I could no longer take care of myself on my own. From that time forward every year marked something lost: driving, getting dressed on my own, Pilates, using my arms, and eventually even walking became a full on workout. I now find myself either in bed or a wheelchair. Even holding my head has become difficult. However I am 10 years into my diagnosis and I still only use a bi-pap for exercise. Unfortunately though I now need full time care, I only walk to and from my wheelchair or to the bathroom, I eat a soft diet and have a feeding tube for when even that becomes taxing, and my immune system is shot. Since 2020 I have been hospitalized for pneumonia and Covid each time setting back my strength. I also have started to find that a simple cold or stomach bug can take me out of commission for weeks. Thankfully I always have been able to bounce back thanks to my family and care-giver Fran. My Dad also has been tirelessly advocating on my behalf since I got diagnosed. Which lead my doctors to be able to identify two biomarkers in my genome that are ALS indicators: ATXN2 and UNC13a. The latter produces an excess of glutamate that blocks the electric signal from my cells to my muscles. My doctor and I therefore think that some of the glutamate blockers I am on i.e. riluzole, baclofen, gabapentin, and nuedexta along with my medical marijuana are in large part responsible for my slow progression. Which is fine for now but I would be lying if I said I didn’t daydream about what it would be like to receive a medicine that would actually reverse some of the devastating damage ALS has done to my body. I constantly contemplate all the different workouts I would try to rebuild my atrophied muscles. But mostly I know what it would all boil down to trying to get back out on the mountain to Snowboard! I can see it even now in my mind's eye, the snow cap mountain, fresh powder and the toasty fire and cocoa in the lodge at the end of the day. But until that day I’ll be binge watching RduPaul’s Drag Race pretending our country’s not a dumpster fire and the planet isn’t dying.

Your Sister in Quicksand Beth Hebron

Rachel

When I was diagnosed with ALS at age 28 in 2015, I felt like I lost everything. My body, without warning or reason, turned on me, and that meant the end of so much. My teaching career and dreams of motherhood and growing old with my husband were all swept away like sand when I believed they were stone. These major losses hit me fast. The other, less obvious ones, crept in slowly, adding weight to my chest one suffocating ounce at a time.

If I heard a song I liked on the radio, I would move to dance before remembering that my feet had grown dangerously heavy and clumsy. I used to enjoy any activity that involved rhythm, particularly hip hop dance and zumba. I also loved going on adventures with my husband. We canoed, hiked, and hunted for fossils. Before losing my voice, I spoke French and a decent amount of Russian. I was passionate about languages, and now the work I started in sixth grade and continued through undergrad would be for nothing.

My perspective changed a year after my diagnosis when ALS Awareness Month rolled around. My family was working hard, fundraising and sharing facts about ALS on social media. Meanwhile, I did nothing. My guilt over leaving the fight to my loved ones spurred me to action. My mom had been encouraging me to write about ALS since my diagnosis, knowing instinctively in the way mothers do that using this lifelong passion would allow me to process and cope with my struggle. I wasn't so sure; I hated even thinking about ALS, so how could spending time committing my thoughts and feelings to paper make me feel better?

Still, I must have known on some level that she was right because I decided to contribute to ALS Awareness Month by writing a short post on Facebook each day describing an experience in my new normal. I imagined a few quick sentences would be adequate. However, much to my surprise, the first post I wrote was several paragraphs long. Once I started telling the story of how I was too uncomfortable to sleep, I couldn't stop. I wrote for an hour about the feeling of helplessness that weighed on me when I first realized that I was too weak to roll over or adjust my blankets and the gut wrenching guilt of having to wake my husband up every few hours to reposition me. By the time I clicked "share" my mind was buzzing with ideas for what I would write tomorrow. That night, I went to bed happy.

My daily posts quickly turned into a blog. For the first time since my diagnosis, I felt exhilarated and full of purpose. I came to see that in my mind, I am free. It is the one part of me that ALS can't tame. My mind is a mighty force, it's own universe apart from my disease. Lighting storms between firing neurons create constellations of thought and galaxies of feeling. Ideas dart like comets across the vast, wild frontier. I know now that I can fight back through my writing, that this is not how my story ends.

Rachel
Diagnosed at 28

Erin T.
Diagnosed at 23

Emma

During the summer of 2020, I was 19 at this time. I was moving out of my apartment and my mom had noticed that I was walking a bit funny.

She wanted to get it checked out just because as a kid I was always sick. I had epilepsy when I was younger and chronic migraines along with strep throat so my mom always jumped on the ball whenever she noticed something off with me. We started with going to foot doctors because it was my right foot that seemed off to her. She would describe it as me just flinging it.

Then from foot doctors we went to neurologist but they couldn’t find anything either. I was referred to do a muscle test where they used acupuncture needles to listen to your muscles. There we found out that my muscle seemed a little, well they sounded weird as it was described. After another one of those tests I was suggested to take a genetic test which ended up finding out what was wrong with me. In December of 2020 I received a called that I was being referred to Barrows Neurology to speak with an ALS specialist. January 12th, 2021 I was officially given my diagnosis of ALS around 2:00 pm.

It was actually funny though because at my doctors appointment no one had actually told me I had ALS til the very last person I met which was the specialist. Before I met him I met with their physical therapy team, social worker, dietitian, breathing specialist etc then I finally met the ALS specialist. I ended up taking a semester off from college just so I could process everything and gradually get used to a new life style. I was introduced to many medication and even had surgery for the first time (when they had placed my IV port).

Since my diagnosis I’ve had very little progression because later on I had found out I have two forms of ALS. I have both a dominant form and recessive form which I’ve learned can be why my progression is slow. That does not mean I am not limited, I often trip due to my drop foot. I can’t walk as far nor can I go up a large number of stairs. I can no longer travel without a companion due to my families fear that something would happen to me. Despite this horrible diagnosis I’ve learned that having ALS doesn’t define me as a person. Thanks to this illness I’ve actually been able to travel outside of the country twice with my siblings and see lots of new things. I’ve made lots of connections within the ALS community and I even raise money through the ALS walking and through my video game streaming.

I’m now currently 22 and have gained a lot from my illness. Everyday I educate people whenever I share my Illness because it’s not something I hide or am ashamed of.

Emma
Diagnosed at 20

Yajahira
Diagnosed at 38

Whitford
Diagnosed at 31

Sara
Diagnosed at 36

Yajahira

My name is Yajahira, and I was diagnosed with ALS at the age of 38. Im from NYC, I love nature, going the beach, listening to music and sports. I love being creative and just letting my imagination flow. I have plans to get a house and travel around the world with my boyfriend. This won't stop me!

As I read and learn more about others with this condition, I realized my symptoms started earlier than I really thought. As I used to go get my nails done, my nail tech will always ask me about the shaking of my hands. She would tell me to get it checked out. I never really paid much attention to it, as I thought, maybe it's just something I get from Dad. He's always had shaky hands.

Then, just last year, as I was sitting in the chair getting my hair done, all of a sudden, my neck sort of just lost strength and almost snapped back. That was very scary. My hair dresser also advised me to get it checked out. I didn't pay much attention as i thought I was just tired. But it kept happening

But then, at the beginning of the year, I started noticing how my left arm was losing strength. I couldn't lift it as much, and the tremors were a bit more.I decided to go to my doctor to get checked out. She thought it was a pinched nerve and sent me to see the pain management Dr. The doctor prescribed me some physical therapy as insurance will not approved of anything else before physical therapy was done. Makes no sense to me, but that's how it was. When that didn't work, and after months of treatments, tests, MRIs, and an epidural shot. I was referred to a neurologist. I remember the look on her face after just looking at me. She knew something was very wrong. After conducting her own tests and MRIs, she couldn't diagnose me herself, so she referred me to a muscle specialist who could. Less than a month of seeing the muscle specialist and getting so many tests done, and almost all the blood in my body drawn for 7 months, I was finally diagnosed on 8/24/23.

This is all very surreal for me. Im still comprehending everything that's happening as I try to adapt to the changes that are happening to my body. I can't bathe on my own anymore,walking is becoming much harder, and just to do the simple things on my own, I need to rely on someone else.

I'm very grateful for all the support I've been getting from everyone around me. For my amazing boyfriend for fighting each and every day with me and uplifting me with all his love and support. And to my new ALS family, I am in awe of the kindness, compassion, and love found within this community. It makes it so much easier for anyone who has to embark on this journey.

Im never giving up. We're e're never giving up! There's so much work that needs to get done so we can beat this beast! I know one day we will.

Devon
Diagnosed at 37

Stephanie
Diagnosed at 37

Kiah
Diagnosed at 33

Erica
Diagnosed at 38

Kiah

Hi! I’m Kiah, and I’m a total newbie to this universe. My first noticeable symptom was an intense hand cramp while holding a telephone. I am a school counselor, and had a concerned parent on the line, so I shook the stiffness in my hand out and promptly forgot about it. I was in the first year of a new career, and swiftly falling in love with a new person who would end up becoming my future husband. My left hand continued to act like a weirdo, and by September of 2022 I noticed I was losing muscle mass. I’ve always been bad at opening things, so losing grip strength went unnoticed. I had lots of fasciculations and twitches. I went to a physical therapist, who referred me to my primary care, who referred me to a neuropathist. I was initially misdiagnosed with cubital tunnel syndrome and had surgery on my hand and elbow. When my hand didn’t regain strength, and continued to lose muscle, I was finally referred to neurology.

The diagnostic process was long, and emotionally and physically painful. I received my official diagnosis on November 22, 2023 at 33 years old. I am finding small ways to release the trauma of MRIs, EMGs, and reflex checks from my body in order to move forward. My treatment thus far has been a mix of Western and Eastern medicine, combining riluzole with acupuncture and lion's mane, B12 injections with herbal flushes.

I am now experiencing symptoms along my entire left arm, and some slight weakness in my left leg. Time will tell how this will progress for me, but I am continuing to live with the hope of slow progression and lots more time with my partner. We are getting married in August and I want to wear heels, damnit! In the meantime, we are taking a three week trip to Patagonia to see glaciers and penguins, and spending more time than ever appreciating hikes with each other, simple things like holding hands, and splurging on meals with friends. I’m continuing my work with students and hope to be able to do so for a long time.

Kristin

In order to fully explain and share my story, I must share a little bit about my past as it plays a big part in my current situation.

I am 41 years old and was diagnosed with ALS September 12, 2019 at the age of 37. My past plays a big part in my current life because I have minimal family support. My biological mom passed away when I was 13 months, my father passed away in 2011, and my brother Cody passed away in 2013 at the age of 26. I do have a biological brother who is not involved in my life because of the way he tragically violated me as a child. My stepmother married my father when I was 3 years old and she is still in my life, but she does not live locally anymore. So, unfortunately, my familial support is limited, if not nonexistent. I am extremely thankful to be part of this group now and I am looking forward to building relationships with other women who can understand the struggle of dealing with this disease. I am hopeful that it will offer another avenue of emotional support.

No one is prepared for a diagnosis of ALS, especially at such a young age. When I got diagnosed, I had just moved home to Buffalo, New York from Tampa, Florida where I had lived for 15 years. I moved home in January 2019, wanting to settle down, buy a home, and have a new start on life. I feel like this was stripped away from me by this brutal diagnosis. I was diagnosed within a few months. It started with not being able to walk upstairs very easily to then having a couple major falls which resulted in a concussion and a broken ankle which led me to seek help from a neurologist. My first appointment was in July 2019 and by September I had the official diagnosis. I will spare you the emotional details of diagnosis day -- of course, a lot of that day is a blur but I do remember asking my doctor what I should do and his words were to go home and get your affairs in order, essentially telling me to go home and prepare to die. I decided that day, and in that moment, I would refuse to let ALS define me because I knew as soon as I did, it would defeat me.

My next doctor's appointment was the typical ALS clinic appointment with physical therapy, speech therapy, and a slew of other professionals trying to explain their role in my treatment. I can say I did not feel supported that day. I felt like everyone came in with a defeated spirit and absolutely no hope. I remember the physical therapist asking me about my living situation and at the time I was living in a townhouse I just rented but I knew that was going to be short-lived due to the fact that stairs were becoming a major problem. The therapist asked me what I was going to do and I explained that my plans were to buy a home. She quickly cut me off and quipped, ''you really should not be thinking about purchasing a home in your condition. Don't you have any family you can live with?“ My eyes welled up with tears as I excitedly explained to her I do not have any family to live with and I will not give up on a dream of mine, owning a home, just because of this diagnosis. I then left the appointment. I was told by my neurologist that I should immediately quit working and start the process of applying for disability. I felt like every person that I was supposed to rely on for help with this disease was essentially giving up on me and my life, but I knew that I had a lot to do to continue living.

My first goal was to purchase at home so I would have a safe living environment. In order to make this dream a reality, I had to put in a lot of work. I worked a lot, I worked overtime, I improved my credit score over 400 points and within two months I was able to purchase my home and close on my house in January 2020, three months after being diagnosed. I proved to myself in those three months that having ALS doesn't mean you stop living life; in fact, the exact opposite, you learn about what is important in life and you get busy living.

My biggest supporter in this journey is my current caregiver, Gary Duncan. Gary and I were a romantic couple in Tampa for over 10 years. When I moved to Buffalo we stayed in contact and when I called him to let him know about the diagnosis his exact words were, "we will get through this together." I tried alternative treatments in Albany a couple times and Gary came up each time to travel with me and stay in Albany for an extended period of time while I received these treatments. These treatments involved antibiotics and hyperbaric oxygen chambers but treatments were not covered by insurance and with the help of GoFundMe I was able to afford two rounds of treatment, but the expenses of living in another city and paying for treatment out of pocket was not sustainable long-term. I tried applying to clinical trials but unfortunately it was too late and I was past the diagnosis time frame to qualify. Along the way, I tried taking supplements at home of every different sort hoping something will help. I think that's the most important thing. I refuse to lose hope. People ask me a lot of the time how I do it, but the truth is when you are backed into a corner, you figure out how to fight for your life. That's what I've been doing every day.

This past year has been the most dramatic since my diagnosis as I am now fully wheelchair-bound. My stepmom moved away in July to South Carolina and although I was living in my own home with a roommate I knew I was going to need more help so I called Gary and in May of this year he came to Buffalo to help me. We had always kind of known that would be the plan when the time came, and he selflessly left his life and the company he owns with his father to come up here and be my caretaker. Honestly, I would not be able to survive today without him. I am so grateful he has been by my side this whole time. He is the only one who has made me feel like he is on my team 100% forever no matter what difficulties we encounter. We are going to get through life together. I have been very blessed to have a lot of support from the community in Buffalo throughout my journey. Buffalo is called "the city of good neighbors" and they have really proven this to me with all of the support and encouragement throughout the years.

I shared a lot of my journey over YouTube throughout the years and am just now getting back to sharing after taking some time off, but one thing I decided when I got diagnosed was sharing my journey is therapeutic for me, and if I can help one person struggling with this disease or anything for that matter, makes sharing all the more worth it. This journey has definitely been filled with ups and downs. Every day is a new challenge and a new struggle, but the truth is not all of it is bad. I have been able to meet some absolutely amazing people along this journey that I would not have ever met and it has given me a different perspective on life. I always say getting sick was not a blessing but there is a blessing to be found within it. The biggest blessing is learning what is most important in life and understanding not to take anything for granted, practice gratitude and count my blessings.

Kristin
Diagnosed at 37

Katherine S.
Diagnosed at 32

Katherine S.

Hi! My name is Katherine and I am 33 years old. I love music (singing/playing the flute/musical theater), hiking, and being with my family. I work as an online ESL tutor/teacher and I love my International students! I was diagnosed with ALS in February 2024 at 32 years old. I would describe my journey to diagnosis as a whirlwind of different doctors, but I'm very grateful for how it all played out.

My husband and I moved to North Carolina in February 2022. We were living with family at the time trying to buy our first home. While we were living with family, I noticed that it was getting harder to go downstairs without really holding on to the railing. I also noticed that my daily walks were getting a little harder to do. After 8 months of living with family, we bought a house and started moving in October. On moving day, I was going up some steps while holding a table and lost my balance. I fell backward and hit my head quite hard, getting a concussion. I'm very lucky that I don't have any lasting concussion symptoms and I'm weirdly thankful for the concussion for spearheading 2023.

2023 was the year of doctor appointments (and a few more falls) for me. It started with meeting a chiropractor and neuropsychologist for my concussion, a primary care physician, OBGYN, a breast cancer center, pelvic floor therapist, physical therapist, neuro physical therapist, neuro occupational therapist, neurologist and finally my ALS clinic. I'm so lucky for getting so many good referrals so quickly, especially my referral to a neurologist and neuro PT/OT. His team was able to get me multiple MRIs and an EMG. The EMG is what put ALS on the radar in October 2023. He referred me to the Duke ALS Clinic in North Carolina which officially diagnosed me in early 2024.

The spasticity in my legs has made walking/exploring the outdoors difficult but not impossible. My voice is a little slower which makes singing a bit challenging. My right hand/fingers are weak, making typing and playing my flute difficult. Like so many others, I'm being forced to let go of some of my cherished hobbies and interests. It truly sucks.

While this is not the outcome that any of us would want, I'm glad that it happened the way it did. Through the gift of therapy and my ongoing mental health journey (as well as the miracle of SSRIs, haha) I am truly learning to live in the present and celebrate each day for what it is. I'm finding so much support from friends, family, and others diagnosed with rare diseases. They all help to make this world feel more colorful when everything feels so gray.

PALS, we got this.

Lindsey
Diagnosed at 30

Jade
Diagnosed at 29

Melissa
Diagnosed at 39

Sally G.
Diagnosed at 38

Tina

Hi, my name is Tina and I was diagnosed with familial ALS at 38 years old.

When my mom was diagnosed in 2009 after 3 years of searching for a diagnosis the family was shocked. We really didn’t know what ALS was all about. My mom had a slow progression and completed her battle in September 2018.

Towards the end of my mother’s battle with ALS, I began having muscle spasms and fasciculations in my legs – I assumed it was in my head and I was just feeling some of my mom’s symptoms or I was just exhausted and working too much. After my mom passed, my symptoms subsided, or so I thought.

In August of 2019, while working as a home health nurse I started to notice that I could no longer squat while doing wound care on a patient and had some difficulties getting off the floor after completing a task. I was also having horrible muscle spasms that would last hours when trying to sleep. After spending 3 days and nights awake trying to walk of the spasms in October 2019 I decided that I must have an electrolyte imbalance or something going on so I made myself a doctor’s appointment. My primary did blood work and ordered me muscle relaxers. Blood work came back normal and muscle spasms and fasciculations continued. A couple days before Thanksgiving I was out shopping with my friend – also a nurse and she noticed when I was walking that my left foot was, in her words – slapping the ground. That was when I noticed I was unable to pick up my foot when walking. I got a referral to Neurology.

Even though I had a family history it still took over two years to get diagnosed. After my first neurology appointment I was told that my symptoms were likely caused by sleep apnea and referred to sleep medicine. I was diagnosed with sleep apnea and started using my c-pap which for a short period of time felt like it was helping. I was also sent to Rheumatology, which obviously wasn’t helpful. I finally decided to send a message to the doctor that diagnosed and treated my mother and that is when the process finally began.

At this same time I got a call from my cousin on my mom’s side of the family and found out she had been experiencing similar symptoms as I had been. She was seeing a neurologist who did genetic testing on her and found out that our family has the SOD-1 gene mutation. In August 2020 my cousin was diagnosed with ALS, her battle ended September 2022.

I finally received my diagnosis December 2020 – on New Year’s Eve over the phone while I was setting my house up for guest – I cancelled my party and cried for the first time through this whole process.

I continued my fight today. There are good days and bad days. I have learned to listen to my body and rest as needed. But I am going to continue to live and find new ways to do the things I love to do.

I still thrive to put a smile on my face every day and my day is not complete until I have made someone else smile. My mom lived 12 years fighting ALS and she always kept a positive attitude and a smile on her face. For all of us fighting now, there are so many trials and treatments that are showing great promise. I don’t believe there is going to be that one amazing drug that is going to cure us all, but I think there are plenty in the works that will slow this beast down. Just remember to enjoy every moment you get with family and friends and make the most of your time together!

Melissa

Sometimes you really just don't see it coming.

The fall of 2022 was such a blur. My husband, daughter and I got Covid while going through multiple life stressors. When I started having hand weakness a few weeks later, I thought it was the lack of sleep or maybe a vitamin deficiency from breastfeeding or leftover symptoms from Covid. My hands would feel strange after washing dishes or buttoning baby clothes or clipping my finger nails. They didn't hurt but they felt weaker than usual and I felt increasingly disconnected from them. At night, when I laid down I would notice my thighs twitching a lot but figured they were just tired from my busy mom life. In December, I ordered sushi and was unable to use the chopsticks. My fingers felt weak and clumsy. This seemed odd so I scheduled a physical in January.

My journey to diagnosis was very short, unlike a lot of ALS patients. I had my physical at the end of January 2023. The doctor scheduled bloodwork to check vitamins, autoimmune conditions, muscle enzymes and also scheduled for me to have a nerve test called an EMG. All of my bloodwork came back normal. The EMG was scheduled for late February. We celebrated my daughter's first birthday and waited for the EMG date.The results of the EMG were abnormal and showed denervation in 3 zones in my body. Google had already told me that not many conditions yield an abnormal EMG but I was hoping that Google was just over reacting....as it does. Google was not wrong. Three days after my abnormal EMG I was told I did, in fact, have ALS and that I was looking at 2-5 years. I went into medical shock. I couldn't cry. I just felt like I had fallen into some other life that wasn't mine. What followed was more visits with other neurologists, MRIs, genetic testing and several other tests to rule out other possibilities but we still landed on ALS.

The first month after diagnosis was filled with panic. I had spent 7 years trying to conceive my daughter and now that she was here I was told I wouldn't get to watch her grow up. "Will she even remember me?", I thought. It felt so cruel. My husband, mom and I would take turns watching the baby while the other one broke down and had a panic attack in the other room. I couldn't take anything for my anxiety because I was still breastfeeding and then had to start the process of weaning to start medications which brought a lot of added stress for everyone.

After those first few weeks, something changed in me. I spent innumerable amounts of hours researching everything I could about ALS. It was terrifying but I also found stories of hope. I decided there's no way I'm going to miss out on my daughter's life and on the goals I've set for myself. I have lived around the world, have seen and done things that most people will never experience but I'm not done here. I have more to do, more to say, more to learn and a lot more love to give. So I may have ALS but ALS does not have me. I will give this thing the fight of my life.

Still here. Make it count.

Tesla

My name is Tesla Davis. I am 32 and live in Jacksonville, Florida. I grew up in a small town in Nebraska, surrounded by cornfields. I attended Peru State College, about 20 minutes from my hometown, which was even smaller than the town I grew up in. My college life was filled with softball, cross-country, school groups, gym workouts, parties, and boys. At that time, I didn’t have much of a relationship with God.

I met Derrick in college, he played baseball. We graduated in May 2014, and I decided to move to his hometown, Orange Park, Florida. It was tough being away from family and friends, and finding a job was also challenging. Eventually, I found a job I loved as a nutrition counselor and medical assistant at Baptist Hospital. Derrick and I bought a house in 2016 and were preparing for the arrival of our daughter, Harbor, who was born on July 7, 2017, weighing 7 lbs 7 oz. She is my angel baby.

While on maternity leave, I began experiencing weakness in my left foot which I initially thought was related to childbirth, perhaps a nerve issue. A few times, I fell while holding Harbor, but I always managed to protect her. After a year of tests and scans, I had no answers. Returning to work, I would take Harbor to daycare every morning, using a walker to help me get around. At work, my friend Milani, who is also Harbor’s godmother, introduced me to a Bible app, and we would read plans together and discuss them. Milani and her husband often prayed for me.

On November 2, 2018, I was diagnosed with ALS. I was familiar with the disease because Derrick’s friend’s dad had it, and I had even participated in an ALS walk while pregnant. Two months later, in January 2019, Derrick and I got married. By then, I was using a wheelchair due to foot drop on both sides and weakness in my legs. Despite my physical decline, I felt spiritually renewed daily. God was helping me through, and strangers often prayed for me, telling me I was doing amazing. My friends Milani and Danielle provided much Godly advice. I was raising a baby, trying to make my marriage work, and battling my mind and body.

I continued to push myself, doing as much as I could from my wheelchair, like vacuuming and getting up at night to comfort Harbor. I had a lot of anger inside but also a strength to keep going. In 2020, my mom moved in with us to help out as my hands grew weaker. I learned to type with my eyes on the computer, a skill that took much patience.

In 2019, I attended my first church service at Eleven22, and I loved it. I joined an online small group of amazing women and enjoyed learning more about the Word. My best friend, Milani, Harbor’s godmother and my soul sister, was diagnosed with cancer shortly after. Despite going through chemo while pregnant, she delivered her miracle baby in August 2020 and passed away in January 2021. She had been there for me through everything, and I wasn’t able to be there for her like I wanted. It was incredibly hard to lose her, but I know that God tied us together in an everlasting bond, leading me to turn to Him.

I continued to go to church, and in May 2021, I decided to get baptized. With my daughter by my side, I proclaimed Jesus Christ as my Lord and Savior. It was the best moment of my life. After my baptism, I met Jill, who reached out to me on Facebook about Inheritance of Hope. She became a rock for me, always leading me back to God.

2021 was a roller coaster year. My friend passed away, I got baptized, and in September, I discovered my husband was having an affair with a friend. This friend had been giving me relationship advice, visiting me regularly, and bringing gifts. She was in a long-term relationship with another woman, and I had no reason to suspect she would be interested in my husband. I was angry and hurt, feeling betrayed. After much pain and struggle, I filed for divorce, praying for Derrick's heart and for a friendship.

I knew I had to keep fighting for my daughter. After my divorce in 2022, Harbor, my childhood best friend Jeri, and I went to an Inheritance of Hope legacy retreat at Disney World. This experience left an everlasting imprint on my heart. I continue to connect with the wonderful people from Inheritance of Hope, and they remind me of the good in the world. I’ve been blessed with caregivers, family, and financial support, and I’ve experienced a deeper love for God through these challenges. My flesh may fail, but God never will. I am grateful for my friends and family who pray for me and remind me that God is in control. Heaven will be a celebration!

Tesla
Diagnosed at 26

Kaitlyn
Diagnosed at 34

Lydia
Diagnosed at 23

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