In Memory of Alex

Katie Bustamante’s son, Alex, was diagnosed with Acute Flaccid Myelitis at the age of five. Tragically, he passed away from complications of this disorder. In loving memory of Alex, Katie started a giving fund which raised over $8,000 in support of research of rare neuro-immune disorders. Our thoughts and condolences are with Katie and her family as they mourn the loss of their loved one.

By Katie Bustamante

On May 20, 2018 we lost our beloved Alex.  Alex was a sweet and loving six-year-old boy that enjoyed life to the fullest.  He was a firecracker with incredible strength.

For the last year and a half, Alex had been fighting a rare condition known as AFM.  The illness attacked his spinal cord on December 24, 2016.  Within a week, he had become dependent on a ventilator for breathing, and his heart had been severely weakened from the stress of the condition.  He also suffered from upper body paralysis.  Despite these devastating physical challenges, Alex never lost his spiritual strength.

He loved to sing and found joy and beauty everywhere.  He loved baking, insisting that every cupcake or cookie had to have sprinkles.  In a lovely paradox, he also adored the garbage trucks, particularly recycling.   He always wanted to own his own bakery and be a garbage man, agreeing that he should do the baking before the garbage pick-up due to hygienic reasons.  He enjoyed reciting the names of those he loved on a regular basis.  The list was endless and he was always genuinely thankful for the people in his life.  Alex adored animals from the day he was born and always named Friday (the dog), Annie (the cat) and the numerous fish we managed to acquire when he listed his loved ones.  He loved dancing and snuggling.  He loved dressing up and playing pretend.  He appreciated every positive thing that the world had to offer.

The loss that our family and friends have endured is indescribably painful.  Alex was a champion of strength and an amazingly fun person to be with.  The world is not the same without him, but we hope that he now has the freedom to embrace his dreams and become everything that he was meant to be.  We miss you Alex –  Our snuggle bunny, our fighter, our friend, our singer, our boss and everything we needed in this world.  We love you Alex!  Always and forever.

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My TM Journey

By Claire Field

It was a sunny day. I remember the early morning sunshine pouring in through the living room window shaming me into hooving up all the dust. Typically, the hoover bag needed changing first, so while squinting because of the sunlight I bent down to take out the bag.

That was when it hit. A sharp, stabbing pain in my lower back. It crippled me, leaving me a writhing mess on the floor. I don’t even remember getting into bed, but I do recall screaming that I didn’t want to go to the hospital. I absolutely hated hospitals, even when I knew I needed it I refused to go, and I was still cogent enough to assert my free will. So instead my partner brought over the counter pain meds and I curled up in bed for two weeks.

Though the pain faded a little, other odd things happened. Over the weeks, my legs started feeling numb with tingling sensations running up and down them. I went to the GP, thinking I had a trapped nerve, but he referred me for an MRI instead. It was then that I was first prescribed tramadol for the pain and that eased it a little, yet more and more my legs became numb. Before the end of the year, I was taking gabapentin, both drugs aiding in alleviating my symptoms, yet I still needed to increase the doses of each.

The first MRI showed a little damage in the lower back, but also evidence of damage further up. The GP told me the neurologists wanted pictures of my mid-back, so I went for the second MRI.

“They think something far more serious is going on further up the spine, perhaps in the brain stem, so they want a third MRI, this time of the head and neck,” my GP told me. He also mentioned that they thought it might be MS. That was when it first hit me that this was something truly serious, something I might not recover from. I felt like a deer caught in headlights.

With the MRI, it turned out to be third time unlucky, as they found a lesion in the C4-C6 region of my spine. I was then sent to a neurologist who explained my condition – Clinically Isolated Syndrome. This was what I believed my diagnosis to be, with a risk of developing more lesions in the brain – resulting in MS. The neurologists were undecided on whether or not I was presenting with MS – my oligoclonal bands showed evidence of disease and were positive for inflammation – but I still had no brain lesions, and no other lesions except for the first one. In the end (almost a year after I had my first neurological “event”) I was told I had something called Transverse Myelitis and that my symptoms might improve but it was unlikely.

During the series of MRI’s, between the first and the second, I lost the ability to walk. My legs were too numb and too weak. Since then I’ve had to use a wheelchair and crutches. Fortunately, being in the UK, I got these things for free, though after a bit of a wait.

The symptoms fluctuated, but over time they plateaued, and I was getting by on my drugs and physio. Other secondary symptoms developed – the tendons and ligaments in my wrists became severely damaged due to crutch and wheelchair use, my bladder was retaining urine, I was finding it hard to swallow, I developed Trigeminal Neuralgia, and the pain all over my body was becoming unmanageable – yet I tried to move on with my life, accepting that this was the state of play. I would not get better and would only truly get worse if I developed more lesions because of MS. With this in mind I applied for a Master’s program in Health Psychology.

It was the first time being back amongst “normal” people for four years. I’d only really seen the inside of patient transport and various hospitals between 2012 and 2016. It was the first time doing academics since I’d fallen sick (I had my first episode just after graduating with my first degree). It was scary, thrilling and daunting, but I was finally back on track with my career goals. This was supposed to be a test of my mettle, to see what my body could handle and if I could do something full time. I’m not sure if I passed this test, if I am honest, I think I both failed and passed. I managed to graduate, but I also had a relapse.

It was when I was in the middle of my course between the first and second semester when I relapsed. Again, MS was being touted. I ended up in Professor’s Young’s clinic at the Walton Centre in Merseyside (the second biggest centre for neurology in the UK and one of the best in the Europe!). Again my MRI was clear, but it was also definitely a relapse. Again they were unsure of whether it was MS or TM, but it was obvious that I did not need disease modifying drugs. We’d been trying to conceive so they steered clear of adding drugs they were not sure I needed, keeping me with a TM diagnosis. I was relieved – I’d become used to TM and all its foibles and I felt I could handle a TM relapse. With help that is exactly what I did.

The second semester of my course was chaos, but I found out long ago that I tend to thrive in chaos! I had deferred exams because of the relapse, as well as some other coursework assignments, so I ended up doing semester one work alongside attending lectures and doing the work for semester two! I not only passed everything, but I did so with style in some important areas.

What I think is the most important development I am taking away from my Master’s is the subject of my research. I was inspired by the research the university had done and was doing on pain, particularly the research on gabapentin and other drugs for Fibromyalgia. It spoke to me, and so I decided to focus my research on TM pain. This has led to me co-authoring a paper based on this research as well as putting together a proposal for further research.

In 2017 I graduated my M.S.c in Health Psychology and I did so while doing rehab physio and other treatments for TM. I am currently hunting for funding for my Ph.D. which will focus on researching pain interventions for TM and MS pain.

Transverse Myelitis changed me in fundamental ways, but also for the better in the most important aspects. I’m stronger because of it, more confident about what I can and cannot do and more able to call it a day when I reach my limits (or run out of “spoons”!). I can ask for help, and though sometimes I feel guilty or frustrated for needing help I try not to let that affect me negatively. I certainly have less patience for silly people and stressful environments and I listen to my body more and make more sensible decisions – this includes eating healthier and obeying everything a health professional says!

We are still trying to conceive, still hoping, and I am still pursuing my career goals. In fact, having TM has given me a unique perspective and I am heading into pioneer territory with my investigations. Even if my pain increases I hope to reduce that of others.

That is my journey and I hope I have many more miles to go before it is all over.

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Rare but not Defeated – My MOG Story

By Cynthia Albright

My name is Cynthia Albright, and at the age of 45 I was living what I thought was one of the most joyous times of my life. My husband and I were going to be celebrating our 22nd wedding anniversary, both of my children had already graduated from college, and I was expecting my first grandchild. Then, my life as I knew it quickly came to a screeching halt.

In November 2012, I was standing in my kitchen preparing dinner, when out of nowhere, I experienced the most painful, super sharp glitch of pain in my left eye. It was as if somebody had snapped my eye with a rubber band. The pain ran from the base of my skull to the back of my left eye. I literally stood there completely in shock.  At that point in time, I thought this episode was just going to be a topic of conversation at the dinner table. Boy, was I wrong.

About five days later, the eye pain started. Every time I moved my eyes from side to side, glitches of pain and light appeared. I decided to go to the emergency room, knowing there was something terribly wrong. They examined me but didn’t find anything wrong with my eye. After seeing several more specialists, I was referred to Dr. Shalom Kelman. He is a neuro-ophthalmologist. He examined me and diagnosed me with Optic Neuritis. I had three more Optic Neuritis flares within a year’s time. The last Optic Neuritis flare was just five days prior to my first visit with a multiple sclerosis (MS) specialist, which very well could have made a bad situation into a worse situation. Some of the preventative treatments for MS can actually make Neuromyelitis Optica (NMO) worse. Who knows how well I would be functioning right now if I had been treated with the wrong drugs. I woke up blind in my right eye, I had terrible back pain, and I hadn’t walked straight for two days prior. I saw Dr. Shalom Kelman, and based on all of my neurological symptoms, he suspected that I had NMO, and not MS. He immediately had me hospitalized, and IV Solu-Medrol was given to me. On the second day of my hospital stay, my vision had been mostly restored. I was then referred to Dr. Michael Levy. He is an Associate Professor of Neurology at Johns Hopkins and also one of the top NMO specialists worldwide. Dr. Levy was able to give me the diagnosis of NMO based on diagnostic criteria, even though I tested negative for the NMO antibody, which is not unheard of. I was immediately started on a preventative treatment. It is called Rituxan. I currently receive four Rituxan IV treatments every year.

In February 2018, I was tested for another antibody called Myelin Oligodendrocyte Glycoprotein (MOG). The blood test results for this disorder came back positive. So, my diagnosis was changed from NMO to MOG Antibody-Associated Disease. Since my Rituxan treatment has kept me stable, with zero flares, there was no need to change my treatment.

A great friend of mine, her daughter, her sister, and myself have started what we call the MOG project. Our mission is to represent MOG patients, their families, and caretakers that are seeking resources to help deal with the ins and outs of this very rare disease. I am proud to be a volunteer for the TMA, and I am grateful that they were able to take us under their wings. I am eager to learn more about Acute Disseminated Encephalomyelitis (ADEM), Neuromyelitis Optica Spectrum Disorder (NMOSD), Optic Neuritis (ON), MOG Antibody-Associated Disease (MOG-ab disease), and Transverse Myelitis (TM), including Acute Flaccid Myelitis (AFM), so I can pay it forward by helping to spread awareness and raising funds for research with the ultimate goal of finding a cure, as, for many, it is a race against time.

For more information on MOG antibody-associated disease, please listen to our recent Ask the Expert podcast here: https://tma.ong/MOG-podcast.

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Finally Diagnosed: A New MOG Test Reveals the Truth

By Julia Lefelar

You don’t always know where the road you are traveling in life is taking you, but once you get to a certain point in your journey, you can always look back. Sometimes signs you missed were there, but they were written in a cryptic way. It is only after that second look, in retrospect, that we can understand what they were trying to tell us. This is the story of my MOG journey. I feel it is important to tell, because unlike many who suddenly had a changed life, mine changed slowly and the signs were there all along.

I am not sure exactly when this started, but my first memory of something being off was that I became extremely tired. Not the normal kind of tired, but the kind that scares you, like you will just stop breathing if you don’t try. I also had pain around my eyes. My doctor did some tests, with no results. After months of pressing the doctor, I was finally told that I had “Chronic Fatigue”. I spent the next two years searching for answers. I prayed a lot.

One day, while in our kitchen, I asked my husband if the lights seemed dim. He did not think so. I called my doctor, who by now was frustrated and referred me to a psychiatrist thinking I was depressed. Willing to try anything, I met with the psychiatrist who determined I was not depressed. If anything, I was a little “spun up” that I possibly had a chronic illness and my doctor was not taking me seriously. He recommended getting a new doctor.

A few years later, I had one more incident of dimming vision, which went away like the first one. Over time, the tiredness faded.

Then in April of 2014, after another cold, I started having eye pain, especially when rolling them around. My doctor gave me antibiotics, but a few days later, it was still so painful and my vision in both eyes started to dim. This time it was much worse, darkening by the hour. Panicked, I ran to the eye doctor who saw me immediately and told me I was having a bout of Optic Neuritis (ON). He sent me to Shalom Kelman, an ophthalmologist who quickly administered Solumedrol, and I was better.

Unfortunately, this did not last. Two days after stopping the medicine, I was blind again and treated. Again and again it happened, ending with a week in the hospital. Luckily, Dr. Kelman referred me to Dr. Michael Levy at Johns Hopkins. He is the world authority on what I learned could be Neuromyelitis Optica (NMO). Dr. Levy took my case and by August, he put my symptoms to rest with Rituxan. A blood test for NMO was negative. After repeating this more than once, he said that I was in the group of those who they considered as having NMO but tested negative for it. This happens in about 30% of patients. In other words, I was in the Spectrum Disorder of NMO, or NMOSD. It was all very confusing, and I tried to be brave.

Despite the Rituxan, I still suffered attacks about once a year, either in one eye or the other, and once with a small lesion on my spinal cord. This caused progressive weakness and uncontrollable spasms in my legs as well as loss of bladder control. All without much damage though. Finally, after my last attack, Dr. Levy decided that maybe it was time to check me for the MOG antibody, and it was in fact positive. After seventeen years in the making, I finally had my “smoking gun”.

I am lucky, as others are left with bigger scars from this disease. I have to deal with the occasional pain in between my shoulders and while I can see, I have visual issues. Color is dimmer, I need more light, and I can’t pick things out as quickly in a complicated arrangement of objects. Shopping is not what it used to be and looking for things in a messy drawer sometimes frustrates me. I have had my tears, but I had to find the silver lining.

Despite this, still every day is a little scary when your body is a loose cannon. People with colds scare me as I try to be careful not to get sick. Medicine choices are few and Dr. Levy has changed my preventive treatment to Cellcept, hoping for better control over the attacks. Preventive options for MOG are few, so time is of the essence to find a cure.

Because of these struggles, my daughter and I decided to start the MOG Project. My good friend, also a newly diagnosed MOG patient, as well as my sister, happily made the commitment to join us to support the community of those who have nowhere to go and are frightened at the prospect of having a rare disease with no cure. The TMA has graciously taken us in and allowed us to help launch their newest disease advocacy. Things are looking up and for once, the road ahead seems hopeful.

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My Transverse Myelitis Journey

By Anonymous

It all started during 2014-2015 Christmas break in my 6th grade year.

On Christmas Eve, my family and I were exchanging gifts. This year, the power was out and it was pretty cold in our house, and my feet felt numb. My mom dismissed it as my feet being cold and told me to go put on another pair of socks. I followed what she said and continued with all the gifts and activities.

The next day, my feet and bottom felt numb. I didn’t think much of it, I thought it must’ve been the cold and how I slept. I also had flu-like symptoms, so my mom got some Tamiflu for me to take so I would hopefully get better.

The night of December 25th was sleepless. I had extreme pain in my lower back and hips. My mom gave me some pain medicine, which failed to work, and stayed with me through the night. The next morning, I woke up and could barely feel my legs. I attempted to get up but failed and ended up sitting on the floor.

11-year-old me didn’t sense the severity of this situation. I texted my mom “I’ve fallen and I can’t get up.” She thought I was joking, until she came and saw that I really couldn’t get up. I was helped to the couch. Then, my mom had to leave for work at the hospital, but her boyfriend at the time (her eventual husband and my legal father), Jim, was a general surgery resident. I didn’t know at the time, but he is the reason I’m nearly completely recovered today.

December 26th made everyone realize something was wrong. Jim asked me, “What do you mean when you say you can’t walk?” I told him, “When I try to walk, my legs don’t work.” Today, he tells me that at first he thought I was faking to get attention. So, he asked me to try to walk. He described my walk as a “slap-step,” which he knew I would not know how to fake, and my legs collapsed underneath me and I fell.

My mom called my aunt, a Registered Practical Nurse (RPN), to come and look at me to get a second opinion. She knew something was wrong also. During my aunt’s visit, I tried to use the restroom by myself, but when I got there and shut the door, my legs gave out and so did my bladder. The only strength I had was in my arms, so I dragged myself up and yelled for my aunt for clothes. This was only the first embarrassing memory.

That evening, we packed clothes and went to the children’s emergency room at the hospital Jim worked at. It was an hour drive and when we got there, I had to be carried inside because I couldn’t walk at all. We were in the waiting room for a long time.

When I finally got checked in, they asked me a number of questions I had already been asked by my mom, Jim, and my aunt. The first test they did was a bladder scan. My bladder was three times as full as it was supposed to be. I tried and tried to void but it wasn’t happening. I had to get a catheter. This was the worst thing I had ever experienced at that point in my life, and it was only the start.

Now, my hands and forearms were beginning to become numb also. Thanks to Jim, he made me get an MRI. This MRI lasted nearly three hours, and towards the end I was in a lot of pain, but I was unable to press the button because it was in my weakest hand. After that was finally done, the chief of pediatric neurology came to see me in the middle of the night.

Throughout this whole ordeal, I stayed completely calm, thinking, “I’ll be fine, Jim will get them to fix me, I’ll go back to school next week.” But my mom and Jim were a nervous wreck. Jim knew that if the chief of pediatric neurology comes in at an undesirable hour of the night, there’s a serious problem.

I don’t know how I was so lucky, but this neurologist had just completed a full study on transverse myelitis. He knew exactly what to do.

I had to get a spinal tap next, which would’ve hurt but I was becoming more and more paralyzed, so I didn’t feel much. I was in the ICU for the majority of the time after this. My doctor decided to treat me with a liter of steroids every 12 hours. This was painful. It made my IV vein stiff for the next few months.

My parents didn’t tell me for a while that the neurologist had originally told them I would never walk again. According to them, my mom was in complete shock and couldn’t comprehend anything the doctor was saying; she couldn’t make out what he was trying to tell her.

Through my whole hospital stay, a therapist was assigned to come talk to me. Every day. I hated him so much. All he was doing was trying to help, but I didn’t want to talk to anyone. Also, I couldn’t shower on my own. My mom had to help me, and it was awful. It feels terrible to not be able to take care of yourself. Every day I told myself, it will get worse before it gets better.

For three days, I made no improvement. Each day, I was urged, but I’ll call it forced, to sit up. It was extremely painful because I had a shingles-like pain all over what wasn’t paralyzed. I didn’t want to move at all, and the majority of the time, I didn’t. I had to have a CO2 monitor for a day or two and it made me look very sickly, and that made my mom even more stressed.

My doctor was planning for plasmapheresis the next day since I wasn’t getting any better. But on the fourth day, I could move my toe. By the end of that day, I could move my foot. The next day, I was able to use a walker to get mobile. It was an amazing improvement. That day, they also took my catheter out.

On day 5, my step brother brought my dog to the hospital. I was able to be wheeled outside, and I got to hold her. This made me extremely happy. My doctor told stories of the “dog church” that he went to. He had them all praying for me.

I was walking very well by the 6th day with the walker, but I hadn’t voided since they took my catheter out. So now, it was time for a new one. It was equally terrible as the first time. But hey, I could walk.

By the seventh day, I could walk on my own. It was time to go home. I was sent home with a walker, but I never had to use it. I was very disappointed that I was not going to get to go to school the next day. I didn’t want to be different from anyone at school.

When I was sent home, I had to use catheters to void since I couldn’t myself. This only lasted until I was able to get into a schedule.

I spent six weeks being home-bound and I did my best at keeping up with all my school work. I was extremely weak, and it really discouraged me since I was a cheerleader, and before everything happened, I was very strong and could do all kinds of flips. I went to physical therapy for two months and built some strength back, and during that time, I tried to do simple gymnastics. During my time at home, I was asked so many questions from my classmates. I hated being different.

When it was time to go back to school, I was very excited. But when I went back, there were even more questions. I also had a bladder schedule which I didn’t like since all I wanted was to be normal again. Around this time was when I started having accidents. My pelvic floor was extremely weak. These accidents are humiliating, and they still haven’t stopped today.

I continued with therapy and school as time went on. At my last visit with the neurologist on March 23, 2015, I was tested for neuromyelitis optica. The test was negative. On this doctor’s visit, I showed my neurologist how well I was by doing a back-walkover in the hallway. He was very proud.

Things continued about the same with my life for months. We went on a trip to San Antonio and during this trip my mom realized what a problem I had with my bladder. I had to pee every five minutes and had multiple accidents.

After returning home, I was referred to a pelvic floor therapist. I worked and worked with her for the school year and reached a point where I was pretty well off, so I tried to continue on my own through the summer. I wasn’t being held accountable by my therapist, so I slacked off. When it was time for the next school year, I had several accidents and started therapy again. Then, I quit the next summer. The next time I started back at therapy was right before the next school year. This worked well for me, though with the anxiety of school starting, I still had accidents. I have to pay very close attention to my body and not ignore anything it tells me. This way, I have less and less accidents.

Now, it’s my freshman year of high school, and I had been going to therapy until recently. I might not have to go ever again if I can keep up with everything on my own. I just recently had a surgery for my overactive bladder: a cystoscopy with Botox. I think this will work well for me, and I won’t have to take medication for it anymore. I just have to get it redone every 6-9 months.

I think my transverse myelitis was caused by a flu shot. I am choosing not to get a flu shot again because I worry about relapsing. Any numbness or odd sensation worries me that I might be having a relapse. I hope I will be lucky enough to not have a relapse, but nothing is guaranteed.

I am doing great now! I am on my school’s track team, I’m doing well in school, and I’m very hopeful that I will reach any goal I come across.

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Transverse Myelitis: the inside story

By Glenn Hartz

“It’s an autoimmune storm. Came and went and left its damage at C1. All gone now – except the scar. Might come back. Don’t know . . .”

Every time I got sick in the past I could eventually return to my familiar life.

This was different. I limp. My right arm is palsied and slow.

The inside story of my journey through loss and on to hope is captured in this 6-minute video, Loss and Hope. Inspired by Christopher Reeve’s 1995 60 Minutes interview, it begins in a barren attic of limitations and ends with a lush sunrise of new possibilities.

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A Light in the Darkness

By Tara Duffy

Musical notes sounded in my mind like faint memories, bringing me back to a time when misery was not a close friend. I closed my eyes as a stormy breeze swept over my entire body, leaving small bumps on my skin. I had not felt that sensation in so long, that feeling of being alive and free; I breathed it in, let it fill my soul. I hadn’t been outside in two weeks. I watched as people walked by, completely unaware of the great blessings they had this day, blessings they probably never even thought about. It started to rain and that’s when I heard my dad’s voice next to me. “Ready to go inside?” he said, knowing in his heart I really didn’t want to. I nodded and forced a smile. I felt the wheelchair begin to move beneath me across the gravel, and then we reentered through the front entrance of Boston Children’s Hospital. I couldn’t help but notice the people staring at me as I was pushed along, but I ignored them. That’s when I saw her. She was most likely 6 years old, a bandage around her head, but you could still make out her pale hair. As I was passing, my eyes met hers, so innocent and beautiful. The words that left her lips in that moment changed me forever. “Mommy look, she’s in a wheelchair too.” The eyes of my soul were instantaneously broken wide open. At hearing those words, I was happy to be in that wheelchair. My understanding of reality and what it really means to live became clear. Real life is being in the wheelchair where you are truly part of the suffering of humanity, but it is also the joy that can be found by connecting with others who are also living in sorrow and torment. I realized in this moment all I wanted to do was take away the suffering of that little girl and every other child in that hospital.

My journey from darkness to light began October 7th, 2017. It was a Tuesday morning when I blacked out in my kitchen and went to the ER at St. Joseph’s Hospital for the first time. A week later, I had only gotten continuously worse every day at home, but I ignored the signs that something was wrong because everyone was telling me I had to get better. That following Tuesday I was taken to the ER again, but this time I was sent to Boston Children’s Hospital. My body was completely numb from my chest down and I couldn’t walk. I remember that day clearly because of the nightmare it presents in my subconscious. I had been there for only a few hours when I went to the bathroom, sat down to go and could not rise back to my feet; I fell to my knees, tears streaming involuntarily down my face. I could not move, I had no control anymore, I was helpless. The sense of fear that gripped me then was the most powerful I’ve ever felt before.

I remained at Boston Children’s for two weeks, being moved from the neurology unit to the Intensive Care Unit, and back to the neurology unit where they surgically implanted a central line in my neck for a process they call plasmapheresis. The neurology team led by Doctor Gorman informed me they may never find out the cause of this disease they call acute transverse myelitis, an inflammation of the gray and white matter of the spinal cord. This time of trial has taught me many things: determination, that it’s okay to be angry and sad for a time, but that there is an inner strength and happiness inside you if you just believe it enough, and most importantly that the real meaning in life is forgetting about your own suffering and giving yourself to others.

My name is Tara Duffy. It is now February of 2018, and I am still suffering from the constant and fluctuating spinal pain and my spastic bladder, as well as cathing. I am in my third week of school after being out for almost 4 months, most of my senior year of high school gone in the blink of an eye. I feel alone, distant, unable to connect with any of my previous friends or classmates. My old life was stolen right from under me and living with my new life has challenged me and forced me to grow in ways I never wished to imagine. But in of all of this, a newfound compassion for those who suffer, and a dream to one day become a neurologist myself at Boston Children’s Hospital has arisen in my heart and soul. I hope one day I’ll be able to save the lives of children and be there for them just like my doctors and nurses are here for me.

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9 Things I Learned When I Became a Paraplegic Overnight

By David Markovich

The day started off like any typical Saturday. It was April, so preparing for finals week was on my mind. Little did I know, however, it would be the last normal day of my life for quite some time. My name is David, and when I was 22, I was diagnosed with Transverse Myelitis – a neurological condition that damaged the insulation around my nerves, leaving me unable to walk or do much of anything else. Here’s what it taught me.

  1. Don’t Panic

Turns out that the ability to get out of bed in the morning is something you should never take for granted.

I had been feeling a bit under the weather that week, but I didn’t think much of it. My head was a little sore and I was running a slight fever, but I figured it was just a bug or something that I would fight off in a few days. Or maybe it was just stress from finals week coming up. But then, I awakened in the middle of the night with my back killing me. I knew immediately that something was very wrong, so I made my way down the stairs as the pain started creeping down my legs. I woke up my parents and called 911. As we waited for the ambulance and the pain in my legs intensified, I breathed deeply, and tried to stay calm.

  1. Trust Your Gut

My legs weren’t working, but thankfully, the ambulance was.

After the ambulance arrived, the paramedics told me they were taking me to the small local clinic that I had stopped by a few days earlier, hoping to get something to alleviate my headache and fever. The doctor there had told me it was probably just the flu and there was nothing they could do for me other than prescribe fluids and bedrest. I explained this to the driver, knowing this new development was something serious, but the staff was adamant about taking me back there. By this point, I was feeling even worse, so I persisted, and asked the paramedics to take me to the Cleveland Clinic, which was equipped to treat a wider variety of ailments. After some polite but firm lobbying, the staff relented, and we headed downtown.

  1. Keep Your Loved Ones Near

My girlfriend, Catie, stayed by my side the entire time.

We arrived at the Clinic and I was laid up in a bed where I was poked with more needles than I think I had ever seen before in my life. Still, even though my legs had gone from working normally to totally lifeless in a matter of hours, there’s nothing like being in an emergency room to keep things in perspective. My mom and dad never left my side for more than a few minutes for that entire day, and plenty of close friends and classmates came down to see me and keep me company throughout the week I spent in that bed. I don’t know how I could’ve gotten through that day without them, especially after the doctor came back with news that I never could’ve seen coming just 24 hours earlier.

  1. Keep Yourself Informed, But Don’t Overthink

Knowledge is power, but overthinking can burn you out.

That afternoon, the doctor walked into my little space and closed the curtain behind me with a serious look on his face. He looked me in the eye and gave me the news – I had Transverse Myelitis. “Will I ever walk again?”, I immediately asked. He simply responded, “I don’t know.” For what seemed like forever, silence hung in the air. “Everybody is different, but it could take years to even get feeling back. I just don’t know.” After he left, I immediately grabbed the phone off of my bedside and started googling everything I could. The dozens of sources I read echoed what the doctor had said – some patients get back to functioning normally, some never recover, but most end up somewhere in the middle. The pages of information kept my mind buzzing, but I reminded myself to stay focused on the present. What good would driving myself crazy do, anyway?

  1. Don’t Be Afraid to Laugh When You’re Uncomfortable

Can’t be too careful when it comes to fall risks.

At this point, I had a million thoughts running through my head, mostly centered around what the rest of my life would be like. “Will I be stuck in a bed forever? Will I need to use a wheelchair? How hard will the recovery be?” Eventually, the doctor returned and told me that the first thing I needed was a treatment called plasmapheresis, an artificial type of blood filtration similar to dialysis. After he left, I started chatting with the man lying in the bed next to me. “Welcome aboard. Sure sucks to be here, doesn’t it?”, he said with a smile. We chatted for a while, and he told me about how he was there with his third stroke, cracking jokes the whole time and temporarily taking my mind off of the situation. For a guy who spent about as much time in the hospital as the staff who was treating him, he sure knew how to keep things light.

  1. Progress, No Matter How Slow, Is Worth Working For

Every jump up felt like climbing a mountain, and every successful attempt felt like reaching the peak.

By my fifth day in the hospital, I started feeling a little bit better. I underwent five plasmapheresis treatments, and still had virtually no feeling or movement below my waist, but I was able to maybe – just maybe – wiggle the smallest toe on my right foot. The nurses tried to stand me up using a device sort of like a dentist’s chair. It would be my first attempt at being upright in over 72 hours. Well, that experiment quickly came crashing down – literally, because I immediately blacked out and ended up on the floor. Later that day, after I was safely back in bed, I discovered that one of the few doctors in the world who specialized in treating TM practiced at Johns Hopkins Hospital. The staff at the Clinic thought I was in no condition to travel, let alone six hours to another state. But my first few seconds upright since Saturday night were all I could think about, so I made a few phone calls. Then, two days later, not knowing what lay ahead but determined to get my life back, it was off to Baltimore I went.

  1. Work Hard, And Savor Small Victories

Slowly but surely, I gained my strength back.

After I arrived in Baltimore on Sunday evening, I was placed in the neurology unit of Johns Hopkins. My first night there, I was again awoken by my body – this time, however, because my heart felt like it was beating a million miles per hour. I literally thought I was going to die that night. I started screaming for the hospital staff who transferred me down to the ICU where I was diagnosed with a pulmonary embolism and put on blood thinners. The next morning, I saw the specialist who I came there for. He was upbeat and enthusiastic, looking me right in the eye and saying, “David, three things are going to help you get better: physical therapy, physical therapy, and physical therapy.” He told me that my sessions would be long and difficult. At the end of the first one, I had a little more movement in my foot than I did before. After all I had been through to that point, it was cause to celebrate, even if it didn’t seem like much.

  1. Motivation Goes Both Ways

My physical therapists pushed me hard, and every step forward was a step for them, too.

After three days of intense sessions, I was moved from Johns Hopkins to another nearby hospital for inpatient therapy. For around five to six hours per day, my therapists, Elise and Pat, pushed me as hard as I could go (which, admittedly, at that point, was not very hard). But as hard as they pushed me, I like to think that I pushed them right back too (especially the many times I fell over onto them!). They were so dedicated to helping me walk again that they even worked late to spend extra time with me. As much as I wanted to get better for my own sake, I could see that every bit of progress I made was almost as important to them too.

  1. Enjoy Your Time

Because you never know how short it might be.

After a month of hard work, I was finally able to walk again. I still went to PT three or four days per week, and I spent every other day in the gym, exercising and even playing some basketball. Slowly but surely, I started to get my old body back. And even though I had spent the past two months working as hard as I possibly could to try to walk again, I couldn’t help but think about just how lucky I was. Throughout it all, my friends and family stuck with me, and with a lot of help, I went from the prospect of never walking again to living a healthy, happy life like I used to before that fateful night in April. If that isn’t a sign that life is about what you make it, I really don’t know what is.

This article was originally published on Buzzfeed and can be found here.

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Finding Sports After Transverse Myelitis

By Dalia Rebolledo, age 20

Injury level: T10

Diagnosed with Transverse Myelitis on Sep. 12, 2013

Before TM, I was a normal teenager who was passionate about my education. I was involved in extracurricular activities and volunteered as much as I could. Growing up as the first child in my family to graduate from high school was challenging. I faced many obstacles, including learning a second language and an entirely new culture. But without a doubt, the biggest challenge was becoming paralyzed literally overnight.

During the second week of my junior year of high school, I began to get sick. On the night of September 10th, 2013, I woke up and noticed that I couldn’t move my legs. My mom tried to help me stand up, but I collapsed to the floor immediately. I was rushed to the ER and after two days in the Pediatric Intensive Care Unit, I was diagnosed with Transverse Myelitis, a neurological disease with no cure. The inflammation damaged my spinal cord and I lost mobility from my chest down. After the available treatment, I regained upper body strength, but was wheelchair-bound with little hope to ever regain full mobility. I was in an inpatient rehab clinic for four weeks, where I was taught how to move around in my wheelchair.

The first year was the hardest, as I juggled between therapy, doctor’s appointments, and school. In 2015, I was able to graduate high school with honors and made plans to attend a four-year college to study Business Management. My plans didn’t work out, and I was unable to further my education at that time.

In 2016, I began to get sick again, which seemed to be another TM attack. This time I lost strength in my arms. I was in the hospital for a week, and although there was no damage in my spinal cord, my immune system was overactive which could cause more damage at any time.

In December of 2016, I made plans to start going to REACT, a neurological rehab program. I was not going to let TM take control of my life and was determined to work as much as I could to regain my strength back. Going to REACT once or sometimes twice a week helped me gain my upper body strength back and motivated me to work harder than ever. Now I have full control of my arms, and my balance has increased tremendously. I enjoy doing the workouts and learning how to do new exercises.

I was introduced to the Legacy Project and was lucky enough to participate in their summer group. The Legacy Program is a 12 week/3 times a week high intensity, group training program that combines strength training and sport, at no cost to the participants. Participants are given a unique opportunity to overcome their physical limitations and inspire others to achieve what many view as impossible. The Legacy Project is one of the many programs REACT offers. At the Legacy Project, we don’t only work with our bodies, but also with our minds. They motivate and push us to reach our maximum potential. Today, I can say that I am stronger than ever, not only physically but also emotionally. REACT empowered me and encouraged me to try sports and stay connected with a group of amazing individuals. I currently do wheelchair basketball, and I am thinking of doing hand cycling. I also enjoy playing volleyball and soccer/wheelchair rugby.

REACT has encouraged me to be independent and has given me the strength to go out and do volunteer work again and pursue my education goals. I have accomplished a lot of my goals, but my long-term goal will always be to regain full mobility. In the meantime, I will continue to work with what I have and push myself even further.

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Sharing my TM Story

By Felicia Aronsson

I got transverse myelitis on the 21st of August, 2008 at the age of twelve. 4-8 weeks before I got TM, I had severe pain in my lower back and difficulty getting in and out of the car, bed, etc. I went to my local clinic, but the doctor said that the pain was caused by my trampoline. On the day that I got TM, I was with my mom at a café and suddenly I couldn’t grip the cup I was holding in my hands. Shortly afterwards, we decided to leave and that’s when I couldn’t walk properly. I was tottering and I had to lean on my mom so I didn’t fall.

We got in the car and drove to the nearest children’s hospital. When we got there, my right arm and leg were paralyzed. I think it only took 1-2 hours before I was almost completely paralyzed – I could only move my lower arms up and down. It took a few weeks for the doctors to get the results, and both my parents and I were shocked and didn’t know anything. And like every other person who gets TM, I thought that I was going to be completely restored within 2 years. But that’s not the case if you get an inflammation in the spinal cord that breaks down your myelin sheath.

I was at the children’s hospital for 6-8 weeks before getting to a rehab clinic where I stayed for the next 6 months. When I got back to school and was going into 6th grade, it was a real struggle. I felt completely alone and like an outcast. And it only got harder when my so-called friends from elementary school started bullying me in 7th or 8th grade. This really hurt me, and I was even suicidal for quite a while. Things got a bit better when I started talking to other people with TM. It turned out there were a lot of people with TM in Sweden, which I was really happy about.

Things took a turn for the better when I started high school. I was finally able to start over. Today, I started college and unfortunately became depressed. I’m paralyzed from my chest down. I can only move my wrists, and my fingers are paralyzed. I can’t stand on my feet myself or walk. My legs are spastic. However, I’ve made quite good progress looking back at how paralyzed I was when I first got TM. 9 years later I can say that I’m not mad that this happened to me.

It was the human herpesvirus 6 that caused my TM, and like most cases of this spinal cord injury, the doctors had no clue why this happened.

Finally, I want to say that the best way to get more knowledge of this and share your story is to talk to others in the same situation. It’s also really good to join Facebook groups with other people with TM, as it’s a great way to get in touch with others.

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