Some Dates are Hard to Forget

By Cindy Quense

December 7th, “a day that will live in infamy,” has taken on an additional meaning for me and my family as it marks the onset of my transverse myelitis. Thursday, December 6th was normal. I went to work at the Massachusetts Institute of Technology (MIT), but the morning of the 7th my right leg was “buzzing” and felt odd. I didn’t have work and we were going to help out at our son’s new house. I did normal activities, but all day I felt that my leg was off. That evening, I mentioned to my husband, Tim, that I noticed a strange sensation in the shower – I knew water was touching my right calf but had no sensation of temperature. I was thinking it might be an outbreak of shingles, which I had had about five years earlier on my right side. The nerve sensation felt similar.

On Saturday morning, I called my primary care provider (PCP) and asked if I should get a prescription for an anti-viral medication. As I described the issue and sensation, which was now also moving across my torso, she told me that’s not how shingles presents and told me to go to the emergency room (ER). We went and spent most of the day getting exams and several MRIs. They concluded that it was a pinched nerve and that I should have an additional lumbar MRI and see a surgeon on Monday. The next day, it was spreading into my left leg and I was having trouble walking. Knowing what the ER looks like on a Sunday afternoon, I called the doctor’s office to see if they could schedule the MRI. I was told it could only happen through the ER and if I felt worse, I should head there. Assuming I had a pinched nerve and it was late on a Sunday, I thought it best to wait until the next day. I felt like I was stumbling around that house that evening and slept in the extra bedroom closest to the bathroom. Around 3:00am, I told Tim I thought it was time to go back to the ER, but first I would take a shower. No such luck – I could not get in the shower at all because I was having problems standing.

Tim took me to the ER and walked me to a wheelchair, and then after more tests and MRIs, I was admitted; at first to a regular room, but I was then moved to a step-down unit since I was paralyzed from my bra line down.

The next 36 hours were the most frightening. Working at MIT, with doctors, I made a call to one and received the best input possible. He spoke with the neurologist at the hospital and agreed it was one of two things, but treatment paths were different. I had to wait for an EMG before the correct path was chosen. I had no idea what that was, but as they came hourly to test my breathing, and as I felt tingling moving down my arms, it felt like things could not move fast enough.

Being in Boston means that you are in one of the best medical cities anywhere. And, even in smaller hospitals, there is excellent care. Thinking I was going in for a pinched nerve, we went to our local hospital, which is excellent in many ways and the care I got there was wonderful. However, I had to wait for testing until Tuesday afternoon when the specialist was available.

I can’t really explain the frame of mind I was put into by the situation, but I will try. I was paralyzed and could not sit up or move. They used a board to transport me between my bed and a traveling gurney, and off we went through the halls of the hospital wing into the doctor’s wing. This was very familiar to me from past medical appointments, including those with our children’s pediatrician. The exam rooms are small, and this one was no different. The turn into the doctor’s suite was like going into another dimension. On the left was a long working station with two people answering phones, to the right was the tiny exam room I was meant to go in and straight ahead looked like two bedrooms. (It ends up that the suite was shared with the sleep lab!) As the attendant went to present me to the doctor on the right, he looked at me and said, “You can’t get on the table here?” There was a tiny exam table across the room. A room that was filled with a computer cart with a computer that looked like it was from the 1980s, with a lot of wires hanging off.

After the doctor realized I was not going to walk into the room and get on the exam table, he told the gentleman pushing me to wheel me into the room head-first because the room was so small that only half of the gurney would fit in. While I was there, the ancient computer shut down and had to be rebooted, something I had not heard of for ages. Then the doctor, who was on my right side, asked his assistant, who was on my left side, to turn down the light. If I could have moved, I could have done this as the wall switch was only a foot away from me. As it turned out, the assistant had to crawl under the gurney! And the bizarreness continued. After completing the upper body electrical testing, he told his assistant to push me out and turn me around. She tried, and then the doctor called out to the staff answering phones, “Igor, come and move this.” They all forgot to note that the attendant had locked the bed – which I’m sure is according to protocol.  I was the one to point this out and then proceeded to basically explain to them how to do a K-Turn in one of the bedrooms to get my bottom half back into the tiny exam room. After testing the bottom half, they called to get transport back up to my floor. The assistant hung up the phone with a huff and said, “can you believe it, they want me to use a computer to put in a request – we don’t use computers!” Instead they used a pager to get another assistant. He had no idea how to get me where I needed to go, and at one point I was left in a hallway as he went to get help. Finally, a nurse came along and brought us through a locked unit to an elevator which would get me where I belonged. As the elevator opened, there was my original attendant – he knew where to take me.

Results from the EMG meant I did not have Guillain-Barré syndrome, so by default treatment was started for transverse myelitis. By Tuesday evening, I was given IV steroids. After one day I could wiggle two toes on my left foot, after four days I could sit up (if I held on), and after five days they could transfer me to a wheelchair using a standing pivot device. That also got me into the shower – an amazing delight!

During the week in the hospital, our challenge was to keep up our humor and to test that of the residents and neurologists. What I was going through was not linked to a clear cause. Having worked with a research group for the past twelve years, we knew how to try and find out information. This was a nightly challenge for us and our relatives. My sister said it was leprosy – based on a good Catholic school education and memorizing the lives of the saints. And, for me, especially after the steroids kicked in, I had plenty of time to look up what may be going on. The team showed up each morning and I gave them my list. Tests continued and no clear cause was identified, and it was classified as Idiopathic Transverse Myelitis. When I spoke to my MIT connection, he said the “best outcome” may be a single episode, but you have to be comfortable with no conclusive reason and know that you cannot live with the stress you were under before – he was the first one to suggest that there would be a life change ahead.

Finishing up the IV treatment, I was transported next to Spaulding Rehabilitation Hospital in Charlestown, MA. Given a tour my first day there, Tim ran into an acquaintance from our kid’s years in school. He was recovering from a bicycle accident and was finishing his rehab that day. He told us – this is like Space camp and you should do everything they say. He was right. I was amazed when they showed up the next morning to take me to the gym. Physical therapy (PT), occupational therapy (OT), therapy of every kind was given and, even though I spent the holidays there, by the end of it, I was walking out! I was using a walker, but I could move in a very stilted fashion and that felt like a huge achievement!

I started outpatient PT the following week on a Tuesday but by Thursday I had marked weakness and was strongly advised to get back to the hospital. Our local hospital, and the neurologist there, did not know what more to do for me. Again, we reached out to my MIT connection and again he came to the rescue. He made arrangements to link me with the neurology team at Beth Israel Deaconess Medical Center (BIDMC), and off we went to another ER and admittance. Again, lots of tests, and the decision to rerun the IV steroids but this time with an oral taper to ensure that the acute phase was over. After two nights in the hospital and very little sleep, we convinced the team to allow me to do outpatient IV treatments. Having experienced two attacks, the fear of going off the steroids existed, but I finished treatment after twenty-three days and got back in the rhythm of outpatient PT two times a week.

So many things have changed in our lives. The house has been retrofitted with handrails and bars; a shower bench sits in the tub; a closet that used to hold sweaters is filled with medical supplies; fashionable clothes have been swapped out for loose fitting ones – I’m still hoping to find a magic fabric that doesn’t hurt; sneakers replace boots and heels; work is over and a social life has not started up again. It’s just too overwhelming and getting through the pain, exhaustion, and anxiety that each day brings with it takes all of my focus and energy.

We attended the 2019 Rare Neuroimmune Disorders Symposium (RNDS) to learn as much as we can about TM: How do you manage the many aspects that impact your life? How do you live with uncertainty about recurrence? What is the research community learning and what do they recommend? How do you maneuver through the insurance minefield? (Blue Cross Blue Shield recently cut off my PT after thirty-four sessions citing insufficient progress. Subsequently, two grievance appeals have been denied.)

Attending the 2019 Rare Neuroimmune Disorders Symposium (RNDS) was a worthwhile and enlightening experience for both me and Tim. Being new to this world, it was comforting to know that such an organization existed. The ability to meet others dealing with rare neuroimmune disorders, specialists at the forefront of the research, and people dedicated to making a difference gave us a sense of community and of hope, and for that we are grateful.

My Diagnosis in Canada

By Iliana Barahona

Part I of this story was originally published in 2015 by NMO Stories, presented by The Guthy Jackson Foundation and the Connor B. Judge Foundation, which you can view here. Part II of this story was published in 2017, which you can view here.

Part I

Sometimes I think I could write a book about my story with NMO.

I was 21 years old at the time, and it was the end of summer before I was ready to start my third year of university. I woke up one day and noticed that I was dragging my left leg around. It was numb and tingling, a feeling I had never felt before. Eventually the symptoms got worse – I couldn’t keep my food down, I lost control of my bowel and bladder and it took multiple emergency room visits before they actually took me seriously and admitted me into the hospital. I was admitted into the hospital for the first time August 25th, 2013. I was put on a high course of steroids for seven days and sent home. The symptoms eventually came back but ten times worse! My mother and I went back to the emergency room and told them we weren’t leaving until they got this all figured out. From that night on I was in the hospital for four months, and the last month I spent at a rehabilitation centre learning to walk, run and even shower on my own.

The first month of my hospital stay remains a blur; it was the worst time, and I don’t remember much to this day. The memories of living with neurological pain, not being able to walk, eye pain, not being able to shower on my own or even have any control of my bowel or bladder were a nightmare. The doctors were doing multiple tests to figure out what the heck was wrong with me! Tests included: multiple X-Rays, ultrasounds, two lumbar punctures, a skin biopsy, barium swallow exam, multiple blood tests, a gallium scan, CAT scans, and a total of eight MRIs. The doctors were thinking that I might have multiple sclerosis or even lymphoma, which required them to do a surgical biopsy of the cone of my spine. Just a few days after that surgery, all bad things like lymphoma were ruled out and I tested a weak positive for neuromyelitis optica (NMO). The doctors here wanted to make sure that this was my diagnosis and sent my blood off to Oxford, England. When the doctors heard back from them, then it was time to start treatment.

I had my laptop in the hospital, and all I did was research. I learned that this orphan disease deserved a different treatment than multiple sclerosis, that basically your own body is attacking the healthy cells, and last but not least, that most of the research for this disease is done in the United States, which could be a contributing factor to why my diagnosis took so long.

I had plasma exchange treatment for five days and unfortunately, from having so many IVs in both arms for the time I was there, the tissue in both arms was so bruised up and damaged that they had to put a central line in to conduct the treatment (a tube inserted into the neck). Immediately after, I started steroids and was eventually sent to rehabilitation.

Today I am on Imuran (Azathioprine), which was the one drug that the government of Canada approved me to take. But I am currently living with depression and inflammatory arthritis. I returned to school, and I am walking. Do I still feel like I am battling and overcoming what happened to me in 2013? Of course! But my way of thinking is that this is not a disease that will overcome anyone that has been diagnosed with it. It is only a minor setback; positive thinking, living a healthy and active lifestyle is important…what defines us is how well we rise after falling.

Part II

The last time I wrote about my neuromyelitis optica (NMO) diagnosis, I had returned to university in hopes of finishing my degree. Two months after writing part one of my story (Spring 2015) I was getting very stressed, overwhelmed with school, social life and trying to accept that my illness has become a part of my life at the age of 23. I relapsed, and everything about my life took a turn again, and I never returned back to university.

I never completed my second semester of my third year. I found myself sharing my story and the NMO illness in front of classmates one day and breaking down. I realised I hadn’t fully accepted what happened to me. Until this day I may never accept being diagnosed with such a rare disease. I continue explaining to people how it is similar to multiple sclerosis (MS) but deserves a different diagnosis so they understand. But what I realised was moving away to school got me away from hospitals and the painful memories of where I was diagnosed. I ran away from what happened to me. I never fully coped. I dropped my courses, moved home and fell into a deep depression, as well as relapsed and was put on a high dose course of steroids.

With NMO, staying away from stress is number one. It is impossible to live a life stress-free. It is, however, possible to live and cope with stress. I was negative about everything in my life. This included my weight due to the Azathioprine (an immunosuppressant) and steroids, not being able to carry a full course load at school, not being able to drink with other university friends, and finding out what friends were really there for me through the pain and heartache of the diagnosis, and fatigue took a toll on me. Basically, I missed and longed for the person I was before my diagnosis. I think being young and having an illness become a part of your life… it is easy to just want life to return to the way it once was and have things go back to “normal.”

What once was my “normal” never was again. When I fell into my depression, I became the most negative person on earth! I took out my frustration and anger on those who love me the most. My mother, brother, and father were hearing it from me in different ways, and my relationships were greatly affected. I decided I had to take action. I was sinking into a dark place of unhappiness, and how could I get better if I didn’t do anything about it?

I decided the first step was to go to my family doctor to let her know that I needed major help. She referred me to a psychiatrist at the hospital. He saw me immediately, prescribed me an anti-depressant which I knew I did not want to take long-term, but if I could help myself out of this dark hole, then I would go for it! I did group therapy with other anonymous patients who were dealing with anxiety and depression. I was referred to the psychology unit in the hospital, and I worked with psychologists who deal with the mental state of patients who were diagnosed with a physical illness and received sixteen sessions of counseling.

That being said, months of working on my mental and physical health at the gym, I learned that this illness is not me. Just because you are struggling doesn’t mean you are failing. This illness will never define me. This illness is a part of my life, and not my whole life. I learned to stop labeling myself as “sick” or “limited.” I have limitations, yes. I have an illness, yes. But these things will never label me. I learned and I am still learning ways to know what I can and cannot handle within a full day or week.

It was time for me to pick a path for my future. Would I return to school? Get a job? What would be something I could handle physically and mentally? I signed up for a waxing (hair removal) course, and then I followed that course with a manicure/pedicure course to do nails. These were eight-week courses. One thing at a time, I thought!

Out of nowhere, NMO had to jump in there again! I do suffer from eye pain, body pain, joint pain (arthritis) or weakness in areas of numbness, some days more than others. I relapsed. This relapse was so bad, I walked into the emergency room wearing dark sunglasses, and they were ready to admit me. I was sad and couldn’t believe it. My mother walked away from the room at one point, and I didn’t understand why. She broke down and thought, “my daughter is sick again.” The neurologist in the emergency room contacted my neurologist, and she gave them the doses of steroids I required. My worst enemy, steroids. They don’t only affect weight, but your mood. Anger, sadness, and numb emotions took a toll on me, and I had to work on my mental health again. I will not blame the steroids for all the mood changes because I was truly upset about this other relapse, especially when ready to start my esthetic courses. During this relapse, unlike my first diagnosis and other relapse, I lost so much hair. I had to get hair extensions and start up my vitamin intake. Since this relapse, I continuously take vitamins that support my immune system, not boost my immune system because I don’t want my body attacking itself again!

The steroids worked right away, and I was ready to start my courses the following week. Being on steroids, I left school as soon as my class was done and went to sleep, but the steroids slowly tapered off, and I didn’t feel as hyper or fatigued.

A few weeks later, I saw my neurologist after maybe my fourteenth MRI within two and a half years. It was time for her to try a new treatment option. Now, in Canada, we are limited to what is approved by the government. Azathioprine is out of the picture with too many relapses, steroids are for my relapses, and plasma exchange is if I am basically paralyzed again, so that left us with two options! Rituxin was not approved, so Apo-Mychophenolic Acid, also known as Cellcept, was my winner. This is the version of mycophenolate mofetil available to me in Canada. This has been my working treatment since January 2016, and I could not be happier.

I finished my courses with certificates at the end of July 2016, along with my counseling sessions and continued psychology sessions into the fall. I had decided to move at the end of August 2016 to a bigger city (Mississauga, Ontario) close to my grandpa and mom since she moved as well. This time, moving away from the city where I grew up and was diagnosed, I did not feel I was running away. It was simply me letting go and moving forward. I kept my neurologist in London, Ontario. I will continue to follow up with her since she knows my case best and I have grown an attachment to such a great doctor.

I have not relapsed again (knock on wood). My last MRI showed that my spinal cord and brain stem lesions are almost not visible but are still there. The only downfall of this treatment has been my skin and healing process is very slow. The body weight is a little more controllable on this medication but not 100%. One cold and I am out of it for two weeks. My skin is sensitive to temperatures, especially hot and heat flashes, and when you are in your twenties, this is ridiculous! This immunosuppressant is known for causing skin cancer, and I have encountered other issues such as pre-cancerous cells of the cervix and had one accessory breast tissue surgery in winter of 2016.

I am working a part-time job in what I learned in my esthetics courses and recently got another certification in my field! I love it! I know my limitations in a week or day. I go to the gym to keep active and for my mental health. One thing that I will never stop working on is me. My health is number one, physical and mental. In order to live happily even when dealt with a crappy situation, you have to work at the other aspects of your life and never give up. Some days are harder than others, I won’t sugar coat and say that everything is fine and dandy all the time. My joints are just about done typing this up, and some days I wake up and dread taking 720mg of Cellcept (1440 mg a day). So, I try and remind myself it is just something I do in the morning and at night and to not overthink it. With that being said, my favourite quote to end part two of My NMO diagnosis in Canada… “Often it is the deepest pain which empowers you to grow into your highest self” (Salmansohn, Karen).

My Transverse Myelitis Story / Mi Historia con Mielitis Transversa

By Lorena (“Zoey”) Fuentes

“It’s not how many times you get knocked down that counts, it’s how many times you get back up.” —George A. Custer.

Hi, my name is Lorena Fuentes, but my friends call me Zoey. It all started with a stomachache on October 27, 2018 after dinner. The stomachache symptoms progressively got worse with each passing day. On the morning of Thursday, November 1st, I woke up to mild tingling and numbness on my stomach, legs and feet. By 11:00 am and while at work, the numb feeling was burning, and I felt nothing from the waist down. I googled my symptoms and made an appointment to see a doctor. Barely able to walk, I saw a doctor at 5:00 pm. By this time my legs were on fire, sensitive to the touch and very painful. Unable to be examined at the doctor’s office, I took an Uber to Mount Sinai St. Luke’s Hospital Emergency Room (ER). While waiting to be seen, I suddenly developed uncontrollable muscle spasms every fifteen minutes. That night, I had two MRIs with and without contrast, an X-ray and a CT scan of my spine to help determine the diagnosis. By the next morning, on November 2nd at 2:00 am, I was paralyzed from the waist down. Nothing prepared me for what was coming, but I walked by faith not by sight that this was temporary. I was given high doses of steroids to control the inflammation that took residence in my spine and high doses of pain medications to control the unbearable burning and pain I was feeling. I was admitted that morning and met with a team of doctors who were unsure of a diagnosis and scheduled me for a lumbar spinal tap procedure on November 4th. On November 8th, results came back for transverse myelitis and the beginning of my journey.

Two weeks after my admission to the hospital, I was transferred to Mount Sinai St. Luke’s Rehabilitation Center to start my intensive physical therapy and to learn how to walk and function again. During my stay in the Rehab Center, I struggled with my everyday needs being handled by someone other than myself. I thought I was getting better and walking with the help of physical therapy, but this illness had a mind of its own and thus began my first flare-up on November 29th, three days before I was scheduled to be discharged. On that day, my right leg suddenly went limp making it hard to walk, and by the next day, my right leg gave out and I was paralyzed again. I then had to dry my tears and go back in that ring and fight harder. Everyone on the unit tried to keep me positive, despite their own sadness at seeing me so heartbroken and so determined not to sit on that wheelchair again. On December 2nd, another MRI and another lumbar spinal tap procedure was performed to determine the cause of the flare-up. After that it all went down-hill, emotionally and physically. I was given choices I was not emotionally ready to make on my own, and since my husband had stopped responding to calls from the doctors and me after Thanksgiving, I cried and prayed. I signed for plasma exchange treatments to be administered at Mount Sinai St. Luke’s Intensive Care Unit (ICU), as my blood pressure was dangerously high. However, they didn’t mention these central venous catheters were administered through the internal jugular vein, after a failed attempt at inserting through the inner thigh.

My nightmare didn’t end there. In fact, it continued with an unexpected and unsympathetic text message from my husband. After fifteen years together and seven years of marriage, my husband texted me that he needed to “make himself happy” and checked out of the marriage immediately after. He never spoke a word to me after that and “ghosted” me during and after my hospital stay. Not only was I now terrified of what was coming, but I was afraid that I wouldn’t be able to survive my broken heart and have enough strength to fight my illness. I felt defeated, broken mentally and physically, and emotionally drained.  I’m not sure how I survived all that, but I kept my faith and put on my armor of strength, dried my tears and got back in that ring to fight again.

After my plasma exchange treatments and more steroids, I started moving my feet. Two weeks later, I was transferred to the Mount Sinai Spine Institute to begin my recovery again. After almost two weeks of intensive physical therapy (PT), I was slowly walking with a walker and the assistance of the Rehab team. On December 29th, I was discharged with the use of a walker and scheduled home PT sessions. However, several hours after being discharged from the hospital, my left leg went limp at 9:00 pm making it hard now to stand. The very next day, my right leg was losing strength, making it hard to stand, walk or do anything without assistance. I now had to rely on my sons, who were limited on what they could and could not do. I called my doctor and was given an appointment for the next day. On December 31st, while trying to position myself the best way I knew how, I fell from the bed. I screamed as the pain was unbearable, and mentally I was destroyed because I now couldn’t move at all. Because of this, the cops were called to assist in getting me into my son’s car. I arrived at the Mount Sinai Hospital ER and called my doctor who ordered another round of steroids and pain killers. Back to the drawing board we went, and another MRI, CT scan and X-ray were ordered to determine the cause of these flare-ups.

Prior to the ball dropping that night, the doctors gave me and my sons the bad news that the fall had caused a fracture in my spine, they found another lesion in my neck, and the inflammation unfortunately spread from T5-T12. Terrified of the news, my sons and I prayed together, and we welcomed 2019 with sadness, fear and anger. We faced all three emotions with each other and the courage to stay positive despite all that I was facing. I was readmitted on January 1, 2019 and prepared myself for another round of steroids and the grueling pain of having the intravenous catheter inserted into my neck into my jugular vein for another round of plasma exchange treatments and one dose of chemo shortly after. After thirteen days, I was transferred to the Spine Institute on the first floor of Mount Sinai and started my grueling PT treatments and my second dose of chemo. I was fortunate enough to have the support of my sons and a few family members who never left my side throughout this journey. Not only my family, but all the doctors and nurses at Mount Sinai who worked diligently to find a diagnosis and treat me with the care and compassion the hospital is known for.

On February 1, 2019 at 3:00pm I was finally discharged and walked out of there with a walker and a newfound strength and never went back. It has been almost a year and I have 80% of my sensation back and about the same in mobility. According to my doctors, with continued physical therapy, eating right and no stress, I should have all my sensations back. This has been a journey for me emotionally and physically, but I held my head high despite how broken I felt. Faith is trusting the process with your heart not your mouth. My faith carried me through my troubled times. I had faith then and now that all things are possible when you clear your mind of the clutter and focus on finding that strength you didn’t know you had and using it to fight those battles that come along unexpectedly. I will always remember November 1st as the day I was reborn, and even though I still have a footprint of my illness, it is that reminder that keeps me grounded and appreciative of everything life has to offer. I feel my story can help others stay positive and know that there is light at the end of darkness no matter your circumstances.

“No es cuantas veces te derriban lo que cuenta, sino cuantas veces te vuelves a levantar. ” —George A. Custer.

Hola, me llamo Lorena Fuentes, pero mis amistades me llaman Zoey. Todo comenzó́ con un dolor de estómago el 27 de octubre después de la cena. Los síntomas de dolor de estómago empeoraron progresivamente con cada día que pasó. En la mañana del jueves primero de noviembre del 2018, me desperté́ con un hormigueo leve y adormecimiento en el estómago, las piernas y los pies. A las 11:00 de la mañana y mientras estaba en el trabajo, la sensación de entumecimiento ardía y no sentí́ nada de la cintura para abajo. Busqué en Google mis síntomas e hice una cita para ver a un médico. Apenas podía caminar, vi a un médico a las 5:00 de la tarde ese mismo día. A esa hora, mis piernas estaban ardiendo, sensibles al tocar y muy dolorosas. Incapaz de ser examinada en el consultorio del médico, tomé un Uber a la sala de emergencias del Hospital Mount Sinai St. Luke. Mientras esperaba ser vista, de repente desarrollé un espasmo muscular incontrolable cada 15 minutos. Esa noche, tuve dos resonancias magnéticas con y sin contraste, una radiografía y una tomografía computarizada de mi columna vertebral para hacer un diagnóstico. A la mañana siguiente, el 2 de noviembre a las 2 de la mañana, estaba paralizada de la cintura para abajo. Nada me preparó para lo que venía, pero caminé por fe y no por la vista de que esto era temporal. Me dieron altas dosis de esteroides para controlar la inflamación que residía en mi columna vertebral, y altas dosis de analgésicos para controlar el insoportable ardor y el dolor que sentía. Me admitieron esa mañana y me reuní́ con un equipo de médicos que no estaban seguros de un diagnóstico y me programaron un procedimiento de punción lumbar el 4 de noviembre. El día 8 de noviembre, los resultados me diagnosticaron mielitis transversa y allí empezó mi lucha. Dos semanas después de mi ingreso al hospital, me transfirieron al centro de rehabilitación de Mount Sinai St. Luke para comenzar mi fisioterapia intensiva para aprender a caminar y funcionar nuevamente. Durante mi estancia en el Centro de Rehabilitación, luché mentalmente porque mis necesidades diarias fueran manejadas por alguien más que yo. Pensé́ que estaba mejorando y caminando con la ayuda de la fisioterapia, pero esta enfermedad tenía una mente propia y, por lo tanto, comenzó́ mi primer brote el 29 de noviembre, tres días antes de que me dieran de alta. En ese día, mi pierna derecha de repente se debilitó, y se me hizo difícil caminar, y al día siguiente, mi pierna derecha cedió́ y ahora estaba paralizada otra vez. Ahora tenía que secarme las lágrimas y volver a luchar otra vez. Todos en la unidad trataron de mantenerme positiva, a pesar de su propia tristeza al verme tan desconsolada y decidida a no volver a sentarme en esa silla de ruedas.

El 2 de diciembre se realizó otra resonancia magnética y otro procedimiento de punción lumbar para determinar la causa del brote. Después de eso, todo fue cuesta abajo, emocional y físicamente. Me dieron opciones que no estaba emocionalmente preparada para tomar por mi cuenta y como mi esposo había dejado de responder a las llamadas de los médicos y de mí, dependí en oración para fortaleza. Firmé para que los tratamientos de Plasma Fusión se administraran en la Unidad de Cuidados Intensivos de Mount Sinai St. Luke, ya que mi presión arterial era peligrosamente alta. Sin embargo, no mencionaron que estos catéteres venosos centrales se administraron a través de la vena yugular interna, después de un intento fallado de inserción a través del muslo interno.

Mi pesadilla no terminó ahí́. De hecho, continuó con un mensaje de texto inesperado y poco comprensivo de mi esposo. Después de 15 anos juntos y 7 años de matrimonio, mi esposo me envió́ un mensaje de texto que necesitaba “hacerse feliz y que ya no me quería”. Nunca me dijo una palabra después de eso y me trato como si yo fuera un fantasma durante y después de mi estancia en el hospital. Ahora no solo estaba aterrorizada de lo que venía, sino que temía no poder sobrevivir a un corazón roto y tener la fuerza suficiente para combatir mi enfermedad. Me sentí́ derrotada, rota mentalmente, física- y emocionalmente agotada. No estoy segura de cómo sobreviví todo eso, pero mantuve mi fe y me puse mi armadura de fuerza, me sequé las lágrimas y volví́ a luché por ganar. Después de mis tratamientos de plasma y más esteroides, comencé́ a mover los pies. Dos semanas después, me transfirieron al Instituto de la columna vertebral del Hospital Mount Sinai para seguir con mi recuperación. Después de casi dos semanas de terapia física intensiva, caminaba lentamente con un andador y la ayuda del equipo de rehabilitación. El 29 de diciembre, me dieron de alta con el uso de un andador y preparaciones para terapia física programadas en casa. Sin embargo, varias horas después de ser dada de alta del hospital, mi pierna izquierda estaba flácida a las 9:00 de la noche. Al día siguiente, mi pierna derecha estaba perdiendo fuerza, y se me hacía difícil estar de pie, caminar o hacer cualquier cosa sin ayuda. Ahora tenía que confiar en mis hijos, que estaban limitados en lo que podían y no podían hacer. Llamé a mi médico y me dieron una cita para el día siguiente. El 31 de Diciembre, mientras intentaba posicionarme de la mejor manera que sabía, me caí́ de la cama. Grité porque el dolor era insoportable y mentalmente fui destruida porque ahora no podía moverme. Debido a esto, los policías fueron llamados para ayudarme a subirme al auto de mi hijo. Llegué a la sala de emergencias del Hospital Mount Sinai y llamé a mi médico que me ordenó otra ronda de esteroides y analgésicos. Volvimos a la mesa de dibujo y fuimos con otra resonancia magnética, tomografía computarizada y rayos X para determinar la causa de estos brotes.

Antes de que la pelota cayera esa noche, los médicos nos dieron a mí y a mis hijos la mala noticia de que la caída había causado una fractura en mi columna vertebral, que encontraron otra lesión en mi cuello y que la inflamación desafortunadamente se propagó de T5- T12. Aterrados por la noticia, mis hijos y yo oramos juntos y dimos la bienvenida al 2019 con tristeza, miedo y enojo. Enfrentamos las tres emociones entre nosotros y mantuvimos una actitud positiva a pesar de todo lo que estaba enfrentando. Fui readmitida nuevamente el 1 de enero de 2019 y me preparé para otra ronda de esteroides y el dolor agotador de tener el catéter intravenoso insertado en mi cuello en la vena yugular para otra ronda de tratamientos de Fusion de Plasma y una dosis de quimioterapia poco después. Después de 13 días, me transfirieron al Instituto de la columna vertebral en el primer piso del Hospital Monte Sinai y comencé́ mis agotadores tratamientos de fisioterapia y mi segunda dosis de quimioterapia. Tuve la suerte de contar con el apoyo de mis hijos y algunos familiares que nunca se apartaron de mi lado durante este viaje. No solo mi familia, sino todos los médicos y enfermeras del Hospital Mount Sinai que trabajaron diligentemente para encontrar un diagnóstico y tratarme con el cuidado y la compasión por los que es conocido.

El 1 de Febrero de 2019 a las 3:00 p.m. finalmente me dieron de alta y salí́ de allí́ con un andador y una nueva fuerza encontrada y nunca volví́ para el hospital. Ha pasado casi un año y tengo el 80% de mi sensación de vuelta y casi lo mismo en movilidad. Según mis médicos, con fisioterapia, comer bien y sin estrés ninguno, debería recuperar todas mis sensaciones. Este ha sido una lucha emocional y física para mí, pero mantuve la cabeza en alto a pesar de lo dolida por dentro que me sentía. La fe es confiar en el proceso con tu corazón, no con tu boca. Mi fe me llevó a través de mis tiempos difíciles. Tenía fe entonces y ahora que todas las cosas son posibles cuando despejas tu mente del desorden y te enfocas en encontrar esa fuerza que no sabías que tenías y usarla para pelear esas batallas que surgen inesperadamente.

Siempre recordaré el primero de noviembre como el día en que volví́ a nacer y, aunque todavía tengo una huella de mi enfermedad, es ese recordatorio lo que me mantiene firme y agradecida por todo lo que la vida tiene para ofrecerme. Siento que mi historia puede ayudar a otros a mantenerse positivas y saber que hay luz al final de la oscuridad, sin importar sus circunstancias.

Forty-Five Years and Counting

By Ruth Mulder

April 22, 1974: Confused and afraid, I was in an ambulance and on my way to the University of Iowa Hospitals and Clinics in Iowa City. It was ten o’clock in the morning, and my husband was with me for the hour and a half trip.

Earlier that morning I was awakened by a sharp pain in my lower neck. Thinking I may have laid wrong, I took aspirin and went back to sleep. Later, our son wanted a drink of water so I got up and went to his bedroom, but my hand wouldn’t grasp the glass. I awakened my husband and together we observed that my arms and hands were weak. My husband called our family doctor, who said to be at the emergency room by eight o’clock.

While getting dressed, my fingers wouldn’t work to fasten the buttons. My husband helped me get ready and urged the children to get ready for the day. Our three children were ages ten, seven and three. Arrangements were made with a special neighbor to get the two oldest off to school and to care for the youngest. My husband cleared his absence with the principal at the high school where he taught.

Walking from the car to the emergency room (ER) was difficult, so I held onto my husband. The doctor also took note of my unsure gait. He asked me to review the events of the morning, then proceeded to prick, poke and hammer to assess the reflexes in my limbs. Sensing something unusual going on, he informed us he would make arrangements for me to be taken to Iowa City.

While I remained in the ER, my husband went to talk with the neighbor and each of the children to explain I was being transferred, and if he didn’t make it home by evening, to stay with the neighbor. Lots of tears followed, not being able to say a proper “good-bye” to the children, and not knowing how long I’d be away.

In Iowa City, I was admitted to the stroke unit for tests and observation. My legs would no longer hold my weight, and my arms and hands were completely useless. The first determination: it wasn’t a stroke; perhaps Guillain-Barre Syndrome, but only time would tell. At two o’clock the next morning, my husband was called at the boarding house where he was staying and was informed that my lungs were failing. At 4:30 I was transferred to the Intensive Care Unit and put on a respirator. That afternoon, I was given a tracheotomy, hooked to a breathing machine, and put on IV feeding. I was now completely paralyzed below the neck, but still with no definite diagnosis. The initial warnings that I might not recover or ever return home were frightening. My husband was invited to spend the nights at the home of acquaintances, and fortunately, was permitted to remain in the room with me each day for most of my stay to provide encouragement and help with feeding and grooming, and the like.

Several spinal taps were administered during the first several days in hope that some irregularity would show up to help determine the possible cause of the paralysis. The third day, all reflexes returned and there was slight movement in my left leg. Over the next two plus months, movement gradually returned to my limbs, first the left side and then the right side. Strength in my lungs was also returning, allowing me to be gradually weaned from the breathing machine.

It wasn’t until the twenty-fifth day that the doctor suggested the diagnosis was Transverse Myelitis. It was most likely the result of a virus causing inflammation of the spinal cord in the cervical region. Apparently, the fact that I had the flu a couple weeks earlier was considered to be a possible contributor. I was told there would very likely be some permanent paralysis. The feeding tube was removed on day thirty-three and a pureed diet on a tray was started. I was able to feed myself on day forty. The trach was removed on day fifty-three and I was moved to a regular hospital room. I could now breathe on my own, speak, cough and smell food again.

The children remained with friends until school was out, then were ‘farmed out” to relatives in another part of the state for the summer months. They were brought several times to visit me. The first time they came was emotionally difficult. I was outside on the hospital lawn, seated in a wheelchair, my right arm in a sling, my hair chopped off short and I had lost a lot of weight. My own children, afraid of me! They stood at a distance and had to be coaxed to come near for a kiss and a one-armed hug.

Daily physical and occupational therapy began on day fifty-seven and provided much needed encouragement but also was physically and emotionally draining, realizing life would not be the same as before. Being naturally right-handed, I had to learn to use my left hand for feeding myself, writing, and eventually doing all other daily chores. So, gradually a new reality set in, and I would be forced to learn to live with numerous limitations.

A friend who had baked a cake and the nurses came to my room to sing for my thirty-first birthday. I was given a pass to go home over July 4th, which turned out to be a difficult experience, physically and emotionally, realizing how much my life had changed. A week later, I was transferred to the local hospital, and after being hospitalized for ninety-seven days, was dismissed. Outpatient physical and occupational therapy sessions continued for a year-and-a-half. The return of the right side plateaued, leaving me with a severe limp while walking and a paralyzed right arm and hand. My lung capacity also plateaued at forty percent of normal, but I was determined to make the best of my disabilities. I had a family to look after! The support and encouragement from family and our church and school community helped make the transition to life-with-disabilities tolerable. Eventually, adopting an attitude of contentment.

Following forced-intubation during appendectomy surgery, twenty years into my disability, tracheal stenosis set in at the tracheostomy site. Several laser procedures re-opened the airway, only to have scar tissue grow back in a short time. A wire mesh stent was inserted and provided relief for nearly ten years. However, the stenosis returned growing through the mesh stent, requiring twenty surgical procedures to be staged to remove the obstruction at Mayo Clinic in Rochester, MN. This was followed by thirty hyperbaric oxygen treatments which provided healing of the stenosis but left me with a severely narrowed airway. Nebulizing with saline several times a day helps keep the airway clear.

When I became disabled, the MRI as well as other investigative methods of diagnosis were not available. Years later however, an MRI did reveal a marked narrowing of the spine at the location of the initial pain in my lower neck.

Severe scoliosis and chronic back pain are a constant. Medication helps, but I am never free of pain. Bladder and bowel problems also persist. I gradually lost strength in my legs, used a quad cane a couple of years for stability, but fell occasionally. Ten years ago, a fall caused both bones of my right leg to break below the knee. I have since depended on the use of a power chair for mobility. My husband of fifty-eight years remains my caregiver.

Sewing has been a life-long hobby, and despite my disabilities (my husband cuts most of the fabric), I managed to sew clothing for my daughters, including a Jr-Sr Prom dress and the attendant dresses for their weddings. More recently, I have sewed several hundred dresses and skirts that make their way to the poorest of the poor in Haiti.

I read somewhere that disability is not a blessing, but neither is it a curse. From experience, God rewards with dependence and contentment. Not without struggle, of course, but if we all had all the answers there would be no need for faith and hope.

“Up and Down” Release

By Sarah Todd Hammer and Jennifer Starzec

We, Sarah Todd Hammer and Jennifer Starzec, have been writing since 2012, and it has brought us closer together. From FaceTiming for three to five hours at a time to write, to staying up until two in the morning putting the final touches on our third book, sharing our stories with the world has provided us with unforgettable memories. We’re seventeen and twenty-one years old, and when we started the 5k, Ballet series, we were only ten and fourteen years old. Every book we publish is different, but each one pertains to our diagnoses and what comes along with them. When we began writing our first book, we had no idea how much our series would grow or how much of an impact it would have on others (and ourselves!). Several people—patients, parents of patients, and caregivers alike—have come to us and shared how much our books have helped them get through rough times, which makes both of us incredibly happy. One of our main goals when we first started the series was to help spread positivity and encourage others, because we know dealing with life-altering disorders such as rare neuroimmune disorders is extremely difficult, and it has become clear to us that we’ve succeeded in accomplishing that goal!

Up and Down

Six years ago, we published our first book, 5k, Ballet, and a Spinal Cord Injury. Three years ago, we published our second book, Determination. And now, three years later, we’ve completed the 5k, Ballet trilogy with the publication of Up and Down! We’d always known we wanted to make the 5k, Ballet series a trilogy, and it is so incredibly rewarding to have accomplished that.

Our lives were changed when we were only eight and thirteen years old through diagnoses of acute flaccid myelitis (AFM) and transverse myelitis (TM), but we were both determined to dance and run again as we struggled to cope with our new disabilities. As we got closer to one another and became great friends, we found a lot of support and comfort in our friendship. Every time we had any sort of hardship, we knew we could always talk to each other.

Just like our friendship has helped us get through the difficult times, so has music. We’ve both found solace in many different forms of music during the “low notes” of our lives with AFM and TM, which has changed how we view our struggles. It’s comforting to know that, no matter how many times life gives us those “low notes,” there are more “high notes” to come. We’ve learned throughout these years that diagnoses of AFM and TM always come with ups and downs, and both of us had a lot of ups and downs during the time period of our newest book—2014 to 2017—hence the title, “Up and Down.” We wanted to show that the “downs” and “low notes” are necessary parts of life, but there are more joyful times to come as well.

The Process

Since we started writing in 2012, our skills have grown, and our writing has become more mature. In 5k, Ballet, and a Spinal Cord Injury, the beginning of our stories can be seen through the lens of an elementary schooler and middle schooler. Our stories began when we were young, and as we lived with our disabilities for longer, the experiences we had helped us grow and mature over the course of the series. Because we’ve aged six years since we began the series, Up and Down demonstrates our most mature writing and experiences as young adults as compared to our other two books. Being older presents a unique set of challenges of living with a disability, because navigating through certain situations as a young adult is a challenge for everyone—and even more so when a disability is present on top of it.

Writing is an excellent way for us to share our emotions concerning our disabilities, and we’ve found that it’s cathartic and rejuvenating. It allows us to present ourselves to the world and make an impact in others’ lives through storytelling and charity. And, through writing, we’ve grown closer, and we hope to continue writing together in the future! Although the 5k, Ballet trilogy is over, we know for sure that we’ll continue to share our stories through writing, and it will definitely be exciting to see how many more books we publish! Until our next book release, we encourage our readers to keep their chins up high, follow their dreams, and never give up no matter what life throws at them!

*5k, Ballet, and a Spinal Cord Injury, Determination, and Up and Down are available for purchase on Amazon and Lulu.com, or through the girls’ website, www.5kballet.com*

Continue to follow our stories:

Website: www.5kballet.com

Instagram: @sarahtoddhammer, @jenstarzec.

TM, and Life After

By Barbara Sattler

In 2001, I was a judge enjoying my job, my family, my dogs. I exercised daily, ate well and hadn’t been seriously ill since I was a baby. Over the summer of 2001 I had weird symptoms including a strange intermittent pain in my chest, a searing pain when I bent down and weird bowel and bladder sensations.

One morning in August, I woke up with a fever and nausea. Over the following two weeks, I had numerous tests which were all negative. About ten days later the fever broke, but when I got out of bed, my left leg dragged.

My left leg became more compromised and I began to feel like I had a boa constrictor on my chest and an electric current in both my legs. My right leg became numb in places. I visited a variety of doctors. Diagnoses included a post-viral syndrome but mostly “I don’t know.”

Finally, my primary care doctor ordered a brain scan and MRI and sent me to a neurologist. On September 11, 2001, the day our country saw the World Trade Towers fall, I was diagnosed with transverse myelitis and began receiving intravenous steroids.

As I look back almost twenty years later, I realize how lucky I was. My paralysis receded as did all my symptoms other than pain and girdling. Now, l take a variety of medications which control my symptoms and pain most of the time.

In 2008, I retired and began writing novels from my experiences as a criminal defense attorney and judge. All proceeds from my novels go to the Transverse Myelitis Association (SRNA). Check out my fourth book, Behind the Robe: A Novel, described below.

“All Rise the Honorable Lourdes Vasquez presiding.”

Lourdes, the woman behind the robe and newly appointed to the bench, struggles with questions that change lives. Do the police have probable cause for a midnight search warrant? Should a minor be granted an abortion? Should children be sent to a religious school or stay in public school? Should the man standing before her be sent to prison?

Behind the Robe shows you the daily life of a judge. Lourdes, a passionate public defender, applies to be a judge at the urging of her husband, Carlos, the boy she loved in high school—now a veteran with a chip on his shoulder. As a Latina, she believes she has no chance and is shocked when the governor calls.

As a new judge she must deal with the insecurity. “Can I do this job? Am I just a token? How can I deal with my friends? I’m no longer a defender, but a decider.”

She is more than a judge, she’s a wife and a friend. Things at home deteriorate. Carlos turns to drink to deal with his post-traumatic stress disorder (PTSD). Will her marriage survive? Molly, her best friend, sober for six months, has fallen on hard times. Will she keep her addiction to wine and bad men under control?

Behind the Robe is available at Amazon on Kindle and in paperback, at bookbaby.com in their bookstore and Barnes and Noble online. In Tucson, it is available at Antigone and Mostly Books.

Barbara Sattler is on the Board of The Siegel Rare Neuroimmune Association. While a city court magistrate in Tucson, Arizona, Barbara contracted transverse myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement, she has written three novels and has committed all her publications’ proceeds to SRNA. Barbara’s books are available for purchase on Amazon.com. Barbara also has a blog.

Why I’m Attending the 2019 RNDS

By Sherry Boyack

I registered for the Rare Neuroimmune Disorders Symposium (RNDS) because I have transverse myelitis (TM). My case is not as severe as some, but it definitely affects my life. I was diagnosed in October of 2017 when I had strange tingling sensations from my neck down. (This was after my daughter had brain surgery, my brother had open heart surgery, and both of my sons were in a three-car traffic accident in the 2.5 months prior to my diagnosis.) At first, doctors dismissed it as a virus. Nine days later, after seeing a general practitioner a second time, I was referred to a neurologist. She took my symptoms seriously and ordered three hours of MRIs. I left the hospital after the MRIs to get my hair cut. The doctor called to tell me to come back and admit myself to the hospital because I had TM. I stayed in the hospital for seven nights for a lumbar puncture and high dose IV steroid treatments. My symptoms didn’t really change, but I was exhausted, and my immune system felt weak after the steroids. I was working at the time. A doctor in the hospital said I could go back to work as a teacher’s aide the next Monday. I couldn’t imagine how that would be possible.

I tried to work, but I worked mostly half days through the Family and Medical Leave Act (FMLA) days that I was granted through the school district. At the end of the year in my performance review, I was given a low score in the attendance category. That was tough because I was pushing myself to be at work even half days. I think this is an example of the lack of understanding of this neurological disorder. I looked normal on the outside but was really struggling to make it through each day.

I was getting physical therapy (PT), but it was very painful. My daughter who was studying to be an athletic trainer at the time went with me to a session. She was furious and said that the therapist was too rough. I told my neurologist that PT was painful, and she confronted the physical therapist. After that, he changed my routine to exercises with weights that made me incredibly sore. At that point, I canceled the rest of my appointments with him and went to see a therapist whom I had seen before for knee therapy. He did things that brought me some relief and helped me get stronger.

While my tingling nerve sensations never went away, I started taking prerequisite classes to be accepted into a nursing program at a community college. Just recently, I went to the first day of nursing classes. I had to withdraw, however, because the hepatitis B shot that I got for the program two weeks prior caused my TM symptoms to flare up. I wasn’t sleeping at night because of my overactive nerves and spasms. I am exhausted. I’m hoping to try again next semester.

I’m going to the conference to meet other people with rare neuroimmune disorders and to learn more about TM and how to find medical help in my area.

Breaking Through the Darkness

A story and resource about fighting a mysterious illness and adapting to blindness.

By Andrea Mitchell

My name is Andrea, and I was officially diagnosed with MOG antibody-associated disease in 2013. At that time, there was not much known about the disease. The first two years after the diagnosis were especially hard as I lost most of my sight in both eyes. I am writing my story to help others and provide a resource for the newly blind.

Stepping back in time, I remember walking out of my neuro-ophthalmologist’s office just feeling lost. I had dreaded going into his office knowing that I was not going to have a good report. I had gone through a lot of relapses at this point and remember not being able to read anything on the eye chart. Everything was black in my left eye and very blurry in my right eye. I could not see all the colors in the book he used either. I must have scared my doctor and nurse because I was crying so hard. They didn’t know how to respond, and I felt like no one understood what I was going through. I remember going through the different stages of loss. I stayed in the anger stage for two years. I had lost most of my sight and my life as I knew it. It started out with my inability to drive, not having my health as I used to know it, loss of a great career and inability to engage with lots of friends. It felt like I had fallen down a rabbit hole into some mysterious world. I could not make out faces anymore. I was having trouble doing basic things that I had been doing all my life. I felt my independence slipping away. I have always been a problem solver, so I decided I needed to take charge and seek help. I went to see a therapist because I needed help to cope and redefine my life. It turned out that she would be instrumental in helping me find some of the resources I needed to get started on finding my independence.

Coping with Loss

When I received my diagnosis, there was hardly any information on MOG-Ab disease, and there were no Facebook groups or other support groups available. I told my therapist that even though I was given my medical report, there was no advice on how to adapt to being blind. She was instrumental in providing some resources and information to help guide my way through this new lifestyle. I am not ashamed to say how valuable those therapy sessions were at that time of my diagnosis and beyond. I was battling this disease to keep what little sight that I had left, and I had to keep my sanity and renew my life, albeit perhaps a little different than the old norm.

My first step was to call the Lions Blind Center, which is a nonprofit organization whose mission is to provide education, training, and certification for members of the blind and visually impaired community in Oakland, CA. The Center offers services such as computer training, job placement, and a vision clinic.  They told me they could provide me with mobility lessons. I jumped at the opportunity. A person came to my house and brought a cane that looked like a regular cane but was white with a red tip. We walked around a little and he asked if that was enough. He said he did not want to start out with the regular long blind cane because that would take additional training. I remember thinking what a relief, but, unfortunately, it was not enough for me. I needed much more assistance than what could be received in an hour or so of introductory training. I called him back and he returned with the long blind cane. He showed me how to use it. I practiced using it around the neighborhood. While I was working on my new skills, I must admit I still was not comfortable being blind and knowing everyone I came across would know I was blind. I still persevered because I felt I needed more training with my mobility and daily living skills. Not being able to use my computer anymore was also a huge detriment.

Taking Charge

My next step was to call the Department of Rehabilitation to see what they had to offer. I met with a counselor, and he gave me a referral for someone to come out and further evaluate my needs. He showed up with another person that was in the blind services department. It was the first time that I heard of a school that could give me my independence back.

Vocational rehabilitation services differ by state (https://www.askearn.org/state-vocational-rehabilitation-agencies/). Some states require that you are actively looking for work or education. Below are links for resources in California, but there may be similar resources available in your stare.

The school that was suggested to me is called The Orientation Center for the Blind (OCB). I took a tour and was amazed at all the school had to offer in the way of training. The training included mobility, computer, adaptive technology, braille, and daily living skills (such as cooking, cleaning, and entertainment as well as health and beauty). The mobility training included a tour of the guide dog school and some Juno training. Juno training involves an instructor playing the role of a guide dog, where the student is guided by the instructor while giving the basic commands of “Forward,” “Left” and “Right”. It is designed to train the student to use a guide dog. The only thing that caught me off guard was that it was a residential program. I was told that the program could last anywhere from 6 months to a year, which depended on the individual needs and learning process.

I decided to go, and it was the best decision I ever made. I moved in and went home on weekends so that I could spend some time with my husband and family. I was able to learn how to use public transportation in order to do this. We didn’t have Uber or Lyft in our area at the time and, being in Albany, CA, it was a good distance from my house in Oakley. It took me about a year and a half to complete and graduate from the program because I had continued relapses. I was definitely at the right place, though. I lost a lot of sight but was told by my mobility instructor that I had enough vision to be dangerous.

It was really tough in the beginning for me as I struggled to fit in. There were a mixture of ages and backgrounds there. Keep in mind that I had not been in a school atmosphere in a long time. I was very fortunate to find some good friends there that I still stay in contact with to this day. They blindfold you while you are in class so that you don’t use any vision for assistance. It is designed to prepare you for the future if you have a progressive condition.

The internet is a great place to look for articles and other organizations across the nation and abroad. For example, this article provides a great starting point for those looking for advice on where to start: https://www.allaboutvision.com/lowvision/resources.htm.

To read more of Andrea’s story and see a full list of resources for individuals who are blind, please visit here.

How to Lose a 5K… The Right Way

Last week, SRNA Blog featured Maleah Moskoff’s story of completing a 5K after her ADEM diagnosis. Below is the story of her journey from her husband’s perspective.

By Dan LaCloche

On June 9th, my wife finished in last place.

Two years ago, Maleah needed a machine to help her out of her hospital bed and into a chair. She couldn’t walk. We weren’t sure if she would ever walk again. Acute disseminated encephalomyelitis (ADEM) was the eventual diagnosis.

Two years of hard, hard, difficult work had led up to June 9th, 2019, when she took on the challenge of doing a 5K. Two years ago, walking 25 steps down a hallway with a walker was a HUGE accomplishment. On June 9th, I watched Maleah put in over 8,000 steps to complete the Wonder Woman 5K. Let me tell you about what I witnessed.

Our son Ben and I dropped her off at the shuttle that would take her to the starting line. We had an hour before the race started. We made our way to the starting line (only participants could use the shuttles); when we caught up with Maleah, there were 15 minutes until the race was to start. She had been standing the whole time, waiting with the other Wonder Women at the starting line, which is pretty draining when you have ADEM. All she had were her walking sticks to help her keep her balance.

The race started. Ben and I were going to stick with her the whole way, just in case something went sideways. Her first challenge came right away. At the starting line, she was bunched together with other participants who would inadvertently bump her and her walking sticks as they jockeyed for position and passed her. As the crowd of racers thinned out, she had her next challenge: I noticed that her legs didn’t look as strong as usual. Standing for an hour pre-race, poor sleep the night before, and no morning medications looked like it all had taken a toll. She looked exhausted, and we weren’t even a mile into the race. I tried to keep her focused, taking it one step at a time. Every once in a while, she needed a 10-second break for a quick drink of water and a rest. There was a lot of track still in front of her, but she persisted.

Every step started looking difficult and a bit unsteady. We were almost halfway through the course when we realized that there was no one left behind us, but that was okay; she wasn’t here to compete against the others. She was here to prove something to herself. At this point she had to work hard to get though a busy intersection. There were police cars with their lights on, holding back the traffic. Some cars were u-turning to avoid the blocked intersection. They seemed angry. I told Maleah to stay focused. I could see race organizers closing things down behind us. They were taking down the speakers and barricades. The water stations were closing before we reached them. I was starting to think that they might close the course before she could finish.

Just then, a course volunteer pulled up on her bike to check on us. She asked if Maleah was okay and got off of her bike to walk with us. She told Maleah that there was no way that she would let them close the course on her. She then proclaimed that Maleah was GOING TO FINISH this race. Alison, the volunteer, started chatting with Maleah to take her mind off of what she was doing and was a great source of encouragement. Now the police cars were gathering right behind us. They were following us in, lights on. After a while, another volunteer joined us. He hopped off his bike and joined our growing support team.

Maleah was two miles into the course, in last place, struggling, when we started hearing people clapping. Scattered here and there, along the sidelines, there were spectators who saw Maleah and could see that she needed a boost. Every clap gave her strength for one more step. EMTs were shouting, “You’ve got this! You can do it!”, and clapping. Security guards stopped disassembling barricades to cheer her on. A third bike volunteer joined us. These volunteers were determined to see Maleah finish what she had started. Without Maleah knowing, I had been asking Ben to check Google Maps. We both decided that the news wasn’t worth sharing. She was still a long way from the finish, but I started telling her that we were almost there. I wasn’t sure how she was going to do it, but I knew she was going to finish. More 10-second breaks and more water. She kept going.

I could see her head and heart battling. Her heart was saying, “You’re finishing this”, while her head was asking, “How do I get out of this?” The whole time she just kept going, with two police cars behind her, three volunteers walking next to her, Ben at her side with a water bottle at the ready, and me walking backwards in front of her snapping photos of the team that she had formed.

For perspective, have you ever seen footage of the Michael Jordan Flu Game? Google it, because what I was seeing was even more impressive.

Then we started hearing music off in the distance. It was the after-race party at the finish line. We were getting close; just three more blocks—two more—one more. Only participants and volunteers could go through the finish line, so I ran ahead to get a good spot to snap a picture. And, there she was, coming around the corner, smiling, crying—just a few more steps to the finish. She did it.

Just two short years ago, she couldn’t walk, and now she just finished a 5K! They announced her name as she crossed the finish line. Someone put a medal around her neck, someone else got her a folding chair, someone else handed her a water. And, with that, she had accomplished her goal.

From my perspective, it was pretty inspiring to see the sheer determination, guts, and heart that it took for her to get across the finish line, and it’s something I’ll never forget. So, yeah, she finished in last place…but it felt like first to me.

June 9th Wonder Woman 5K

By Maleah Moskoff

I was diagnosed with Acute Disseminated Encephalomyelitis (ADEM) in April of 2017. Paralyzed from the chest down, I spent seven weeks in the hospital/rehabilitation before returning home in a wheelchair. Flash forward a year, I was walking 5 steps with a walker. Two years post-diagnosis, I was walking using a cane and walking sticks as aids when needed. I set my annual goals, one being to sign up for and complete a 5K in 2019. When I saw a Wonder Woman 5K advertised, I knew it was the one for me. I trained for months with my physical therapist and family, walking distances close to 3 miles with a walker or sticks.

Below is my journal entry that I shared with family and friends afterwards.

I woke up at 5:45am in a hotel in order to be dropped at the shuttles that would take us to Six Flags where the start was. I waited for over an hour before the 5K participants could start. Not feeling well, I was worried to say the least about my performance. I had more neuropathy and pins and needles than usual that early in the day. The female power/strength/energy was incredible. It was very moving and hopeful. The guys joined me at the start and led me through the course. The weather behaved and that was a blessing. I was on pace, 28 minutes first mile, and then fatigue set in. Close to the 2 mile marker, a volunteer on a bike walked next to me. We struck up a conversation and she became my cheerleader. Soon, another bike-riding volunteer joined the pack. He was supportive and encouraging. A third rode in to the now super pack. I wanted to quit. I was spent. My legs were collapsing and my shoulders sore from using walking sticks. They all said, “You ARE finishing!” while pointing out markers to break up what seemed like a daunting amount of blocks to go. We had a police escort behind us and sidewalk spectators cheering me on. It was magical. When I found out that this 5K was closer to 3.7 miles than 3.1, I was like, “OMG – Just over the bridge (I-94) and you’re there!”. Ok, I AM finishing this. I see the finish line and a man asks my name then conveys it to the announcer who says enthusiastically, “Let’s welcome our last 5Ker, Maleah, as she finishes!” I was in tears. Not because I was the last in my group, but because I did it! I finished. Someone got me a chair and a second one for my legs. I was adorned with a medal, banana and water. My private volunteers hugged me individually and we took a group picture. Medical personnel asked if I needed anything. I had just a few minutes to chill out before joining the party. I did NOT poop or pee as I feared I would. It was pretty much over and we made our way to the car. Time to get home, reflect and shower!

June 9th is Transverse Myelitis Day! Wow, what cool timing. I set a goal at the beginning of the year to sign up for and complete a 5K. One year ago, I had a goal to travel to Colorado, and I did that. What will next year’s physical goal be? Scotland! Teaching my son by example that perseverance and effort exceed competition. Ultimately, showing my son that finishing last is irrelevant when the only person you were competing with is yourself. Finishing is more important than placing or ranking higher.

Set a goal, aim, fire!