My Superhero. My Son.

Anthony’s Fight with an inexplicable “polio-like” illness-  Acute Flaccid Myelitis.

By Lisa DeCristoforo

To my Children; Giavanna, Angelina, and Anthony- “Don’t ever stop reaching for the stars! Fight for what you believe in, and never give up hope that you can one day make this world a better place.”

I wanted to get an update out there about what’s going on with my son Anthony… It has taken me forever to find the courage to even get an announcement out, but I just wasn’t ready. To accept something like this happening to your child is near impossible. I still haven’t accepted it and I don’t think I ever will. I don’t want my son to just accept it either. I want him to fight. I want him to have hope

My four-year-old has been in the hospital for the past 65 days. The most heart-wrenching 65 days of my life. You may have heard of it on the news… Acute Flaccid Myelitis. An extremely rare complication from an otherwise common respiratory virus, that’s paralyzing (and now killing) children. So far, this year there have been less than 100 AFM cases… My son Anthony is one of those children. He is now paralyzed. The inflammation of the spinal cord damaged his nerves, leaving him paralyzed below the hips. But just like the other thousands of questions we have, nothing is certain, little can be answered, and his future is unknown.

What I can tell you is that through all of this, Anthony is still Anthony. He’s still himself, and I didn’t lose him… He is still his happy, goofy, selfless, caring, loving self. He’s still him… he’s still my son… and for THAT, I am forever grateful! At first I only looked at what he had lost, what I had lost. I went through a period of mourning. Anthony’s neurologist at Children’s Hospital of Philadelphia (CHOP), Dr. Szperka, had said to me, “You didn’t lose him but you will still mourn. You are mourning the death of who your child once was.” And I was. It was the worst experience of my life. From being told he might not live, and if he did there was a good chance he would be paralyzed from the neck down. Possibly unable to talk, eat or breathe on his own. I felt like I myself was dying. I wanted to rip my skin off and jump out of my body. It’s a feeling like none other… Similar to the feeling I had when my brother passed away. Not the same, but just as horrific. Just as sad. An un-calming and inconsolable anger heating me to my core. An unexplainable whirlwind of emotions, followed by an unbearable amount of grief.

I couldn’t look at my son without crying. He’d cry, I’d cry… he’d smile, I’d cry. He’d say, “look mom I’m fine,” and force a smile on his face as an attempt to ease my sadness… and I’d cry. I had no control over it, I had no control over anything around me. I had literally watched as my son’s body had slowly paralyzed before my eyes with not a thing I could do to stop it. Completely helpless. All control gone. I was a wreck. How was this even happening?! You tell yourself this isn’t real, it’s just a cruel nightmare. But I never woke up. My completely healthy, athletic, energetic, beautiful baby boy had the innocence of his childhood ripped from him with no rhyme or reason as to why. His life was caught in the grasps of this wicked illness… taking its course through his body while leaving a wake of destruction in its path. That’s when guilt struck. Backtracking everywhere we went, everything I did, who we were near, where we ate. Hating myself for not protecting him. If I only would have done things differently a year ago, a month ago, five days ago… the events leading up to this day would be different and he wouldn’t have gotten sick. Every wrong decision I made was a series of events that led me to this moment… That led to my child getting sick. It didn’t matter what anyone said, this was my fault. I was being punished. I kept yelling at God to take MY legs! Take MY life! Just give my son’s back. I pleaded and bargained in every way possible…

I went mad.

I couldn’t talk to anyone. Not even my girls. My daughters, Giavanna and Angelina, knew only that their brother was sick and mommy couldn’t leave his side. I went 10 days without seeing or speaking to them. The longest I’ve ever gone by far! I couldn’t speak the words of Anthony being paralyzed without making it reality. So, I spoke to no one and stayed in full tunnel vision. The first few days felt like weeks. Looking back at those first couple days, I still can’t believe how many things had taken place in such a short amount of time. The initial distress stemming from the insane amount of times he was unsuccessfully poked with needles… 14 hours of straight screaming. Poking every inch of him, any vein they thought would suffice. Having six doctors/nurses holding him down while he screamed in pain, begging them to stop hurting him. His weak little body shook while I held him, both of us crying, in between failed attempts at administering the IV. And even through all that, he remained the polite little sweetheart he is. Always politely pleading with them to stop, “please no, please not again.” It took 4-6 male nurses and doctors to hold him down every time. And for that, Anthony became known as the Incredible Hulk!

I could have never imagined it getting any worse than those first hours. There couldn’t be anything worse than your four-year-old getting tortured by a bunch of strangers… Until, I was told he might not live. You can never prepare yourself for that. Ever. Time seemed to stand still in that moment. Then Anthony started to decline and it would become a race against time… The days blended, my body no longer needed food or sleep to keep moving. My mom and I researched everything they threw at as, from Guillain-Barre Syndrome to Lyme’s disease. Test after test, MRI, CAT scan, LP (spinal tap), blood cultures, etc. In the midst of testing, my mom got a call from my sister’s mother-in-law who also works at the pediatrician’s office my children go to. I had texted her when Anthony woke up from his nap and was unable to stand. I let her know everything that had happened.

When she called my mom, she told her about a notice the Pediatrics office had just received from the Center for Disease Control warning physicians to be on the lookout for acute weakness of one or more extremities. Warning that it could be symptoms of a “polio-like” illness affecting children and causing paralysis…. The doctors at St. Chris shrugged it off. They’d been most certain Anthony had meningitis, as did I. He had all the symptoms. The severe headache, light sensitivity, pain, etc. which we discussed could be the possible cause of the weakness due to the swelling of his spinal cord and would resolve once the swelling subsided. But evidence was still needed in order to make a conclusive diagnosis. After hours of imaging and tests… More poking, more needles (Anthony’s I.V. was removed by a nurse accidentally!), test after test… It was now Friday, it had only been three days. My mom stayed with me and neither of us had slept yet. We were now awaiting the final results of the testing. Once back in the room, I was finally able to relax myself and Anthony was starting to settle. It was just me and my son now. Anthony in his hospital bed and me next to him. Soon after, the Neurologist came in with one of her colleagues. The look on her face was immediately unsettling. I was told to sit so I grabbed my notebook and did as she told. Anthony had in fact had Viral Meningitis. His MRI came back showing inflammation of the spinal cord. But what it also showed were lesions on the grey matter of his spinal cord. They had a diagnosis… Acute Flaccid Myelitis.

With this new diagnosis, we immediately transferred Anthony to the Children’s Hospital of Philadelphia (CHOP) with the help of Anthony’s pediatrician at Lower Bucks Pediatrics. I promptly began educating myself as much as I could on my son’s new diagnosis of Acute Flaccid Myelitis. The more I read the more intrigued I became. And no wonder? The suspected virus known as enterovirus D68 is a theoretical factor that is leaving children paralyzed. Some of these children left paralyzed from the neck down, leaving them quadriplegic. What’s most puzzling is the fact that only certain children are affected in such a way. Why it is affecting some children and not all is unknown. The enterovirus D68 is a respiratory virus that affects a substantial number of adults and children worldwide. It is spread like the common cold and more often seen in the fall season. It also presents differently in children than it does in adults. Children can show harsher respiratory symptoms, whereas adults commonly present with mild symptoms or even no symptoms at all. Still unknown is also whether the virus is a direct attack on the spinal cord or post-viral inflammation causing the damage to the nerves leaving these children paralyzed. There is no vaccine and no cure.

Once at CHOP, everything seemed to feel less stressful, it was a much more calming environment and I felt like my voice finally mattered. He started the IVIG (Intravenous Immunoglobulin) treatment in hopes of attenuating the effects of the unconfirmed virus. We were in great hands at CHOP. Even so, Anthony still got worse. We were unable to move him from the curled-up position he was stuck in without him screaming in pain. Physical Therapy came in to help with his ability to move. The Neurology team at CHOP houses some of the only physicians who specialize in Acute Flaccid Myelitis. With expertise in rare neurological disorders and demyelinating diseases of the central nervous system, we were in the best place to get Anthony the help he needs.

Watching my son bereft of his ability to walk has been detrimental enough. But eventually, you get up and you keep moving. You find your strength to overcome that debilitating grief and you find the strength to fight! You’ll be surprised at the strength you have when fighting for the life of your child. Looking back, I really don’t know how I did it. I don’t know how I continue to do it. All I know is that I love my kids. It’s the most powerful force that’s ever driven me. From watching a tiny unknown person emerge from your own self, to cheering them on when taking their first steps… Anthony’s fight with AFM started 65 days ago and since then it’s been a lot of firsts all over again… The first-time Anthony was able be moved without it being excruciating, the first time he could lay flat, the first time I could hold him, the first time he sat up on his own, the first steps he took in his braces, and so on. Every new first is a celebration and he continues to give me a reason to cheer every single day!

Despite everything that’s happened, we still have so much to be Thankful for. But most of all, I am thankful for my amazing kids. I am thankful for life and for all the moments that make life beautiful. The moments that bring you to your feet with tremendous pride! The moments that bring you to tears because you’ve seen hope that tomorrow will be better! The moments that fill your heart with irrepressible joy and gratification amid all your suffering. You can find hope in despair, if you just know where to look. And I look to my son. His courageous achievements brought me back to the light when I was consumed by darkness. Anthony has made a tremendous amount of improvement and continues to amaze me each and every day. He goes to his ”therapies” to “work out” and shows me (and all the nurses) how much bigger his muscles are after each session. He has more courage than anyone I’ve ever met! He never gives up and I know he’ll never quit. He works hard all day and pushes himself till it hurts, pushes himself to tears!! He has his team here to help rehabilitate him… To rally behind him. To root for him. He has a brigade of people here at the Seashore House dedicated to helping him get that one step closer to healing. There are no words to explain how much they mean to me… To our roommates that became our friends and who we now call family, Thank You; for your strength, for your encouragement. To all our wonderful friends here at CHOP, Thank You… from the bottom of our hearts, Thank You!

Anthony has been here with the best of the best, to support and care for him. But he’s also had the support of his family. His daddy, his sisters; Giavanna and Angelina, his Mom-mom, Pop-pop, Mimi, Pap-pap, and his Aunts and uncles. And he’s also had me… His mom- his biggest fan! Here to cheer and scream, and clap and cry with every new obstacle he crushes! To lift him up when he falls down, and wipe his tears when he breaks down. To be his coach. His advocate. To fight for him… The way he fights every single day. Only caring about making the people he loves proud. Never once complaining about not being able to walk or do the things he was able to do just a brief time ago… The only thing he’s ever asked of us, “please teach me how to walk again?” And with that heart-wrenching request, we gave him a promise…

You will walk again!

There are still so many unanswered questions as to why my child must endure a lifetime of hardship because of this unknown illness known as Acute Flaccid Myelitis. But I won’t stop until I have answers… And neither should any other parent. This is not going to just go away. It will continue to tear apart families no matter your ethnicity or the religion you practice. This disorder doesn’t discriminate between the good or the bad, the wealthy or the poor, nor does it care which side of the world you live on. We need to bring awareness to what is happening and we must be vigilant!! When there is something attacking the most innocent of innocent; our children… something MUST be done to stop it.

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Do I Know You? Finding My Prince Charming

By Sue Lamoree

I met my husband ten years after my TM diagnosis, while attending the annual fundraising auction for Little Bit Therapeutic Riding Center. He’d been checking out a silent auction table when he turned and nearly tripped over me. His cordial apology/introduction was, “I’m glad you could make it.” Caught off guard by his apparent familiarity, I inadequately responded, “do I know you?” That was the start of an awkward, but rewarding courtship.

As a single woman for fifty years, I wasn’t overly comfortable with long term relationships. Add to that the complications of a disability and you have extremely intimidating dating prospects. To my surprise, we managed my special needs creatively and with a great deal of humor. He respected my modest nature and need for privacy. Together we navigated our way through the uncharted waters of girlfriend/boyfriend – disabled/caregiver. Within six months we were married.

I am forever grateful for the circumstances that led me to meet this special man. If I hadn’t been disabled I wouldn’t have been riding at Little Bit where a man named Guy was volunteering.

You can find the full story in the anthology The Healing Touch of Horses under my maiden name Sue Hutchinson: http://amzn.to/2qceTAF

Check out Sue’s Blog, “Keep Rolling On,” here: www.enabled2017.com

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Option B means realizing that you’re reinventing yourself

By Allen Rucker

Sheryl Sandberg is the COO of Facebook, author of the mega-bestseller, “Lean In,” and one of the most influential women in America (featured in the new issue of Time). Three years ago she walked into a workout room and found her husband dead on the floor. He had had a heart event, slipped on the treadmill, and died instantly. Out of this unspeakable personal tragedy comes her new book, “Option B,” about life after traumatic events like this. It will be released on April 24th.

In writing her book, Sheryl came across my book on life after TM — “The Best Seat In The House” — and it struck a nerve. Her reaction:

“With honesty, humanity and humor, Allen Rucker takes us through the darkness of what he lost and into the light of what he gained. His ability to express all the complicated emotions surrounding loss – and to tap into the resilience necessary to recover — is extraordinary.”

She quoted from “The Best Seat” a number of times in her new book, and in conjunction with that, commissioned a video of my wife and me telling our tale of TM.

If you haven’t read “The Best Seat In The House,” check it out on Amazon. And if you get a chance, read “Option B.” It’s very moving.

For more stories, please visit the optionb.org website. For Allen’s full story, please click here.

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I was Just Looking at Your Eyes

by Maria Cerio

Dedicated to my supportive family, friends, doctors, physical therapists, and kind strangers. Without you, my progress would not exist. I am forever grateful.

Lift foot, extend leg, toe up, repeat. With every stride I take, these thoughts fly through my mind, at the same speed that I picture myself being able to run when my head rests on my pillow at night.

When I was three years old, Transverse Myelitis (TM) ravaged my spinal cord. In one moment, the rare neurological disease attacked my body, rendering me paralyzed from the neck down.

My case is idiopathic, meaning no cause could be determined at the time of diagnosis or to this date. The prognosis was that I would likely never walk again. However, I defied those odds.

Today, the image of me lying motionless the night of my onset has faded from the foreground. That night, I was propped up just to flop over.

I have written and told this story, my story, time and time again—for school assignments, college essays, to those who are close to me, even to curious strangers. However, this version is different. It is the college edition. For fifteen years and counting, I have endured the penetration of botox shots, countless hours of physical therapy, and staring contests with no winners. I am now a freshman attending the George Washington University in DC—a point in my life I never thought I would reach.

The journey that began fifteen years ago with my diagnosis continues. Each day still presents its own challenges: regaining and maintaining my strength, managing chronic fatigue, relearning basic motor skills, and mastering my uncooperative muscles. On top of the obstacles and stresses of a typical college student, exist those of a typical TM patient. My college experience began with setting up physical therapy appointments at the George Washington University Hospital. I did this even before registering for classes. I arrived on campus weakened by the twelve botox shots I had received only three days earlier. The shots are intended to decrease my muscle spasms, while trying not to make me too weak. It is a delicate balance. A crack in the sidewalk could be my demise. Each placement of my foot tests my balance, strength, and muscle memory. When I finally take my seat in lecture, with the walk to class behind me absent of falls, I am elated. With hands that were once paralyzed, writing the answers on an exam makes for cramps and worn-out fingers. Next, comes the difficulty of articulating the ideas that I have struggled to memorize. When I turn in that exam, I am ecstatic. It is a life full of big little triumphs.

Integrating into a college community, which at times seems to value similarity, has been and continues to be difficult. Assimilating is challenging. I have met those who are accepting and those who are the opposite. I have met people who turn their head so far around to gawk at my gait that I think their neck might snap. And, I have met those who respect me more for my challenges and disability.

The moments in which these interactions take place are so significant to me. I oftentimes wonder if these encounters mean half as much to the other person involved. A particular memory lingers. One of the first people I met when I arrived at GW said one of the most meaningful things that I have ever been told and the crazy thing is, he may not even be aware of it.

Several weeks after having met him, my exam testing accommodations came up in conversation. He was perplexed as to why I was a student registered with GW Disability Support Services (DSS) and curious about the nature of my accommodations. In the most polite way possible, he inquired about what my accommodations were for. Now, it was my turn to be baffled. I was unsure if he was just being nice or if he had genuinely never noticed my physical disability, which is obvious in the way I walk. So I bluntly asked, “Are you being serious? I have a physical disability.” He sincerely answered, “I’ve never noticed. What do you mean?” Incredulous, I explained how most people notice that I walk differently and stare at my legs. He responded, “Why would I look at your legs? I was just looking at your eyes.” Those few words have never left my mind. It was beyond my imagination that someone would see me first, before they saw my disability.

One of the biggest reasons that I chose to attend GW was because it seemed to be the most accepting and prepared to address my disability head-on. The DSS office was knowing and sensitive. Despite its incredible resources, I still see room for progress in increasing inclusivity on this campus. I have encountered professors uncomfortable with accommodation plans, I have been involved in school clubs uncomfortable with disability, and I have attended diversity events where the attendance was close to zero.

Even on this forward-moving and diverse campus, there is a need to motivate people, to educate people, and to sensitize people on the topic of disability. I did not invite transverse myelitis into my life, but I have decided to make advocating for people with disability my passion. My goal is to make the college experience and life in general easier for future students with challenges. “Easier” means existing in a community where exclusion is replaced by acceptance.

I will not let my experiences be for naught. I am in the process of forming a new student organization on campus geared towards the inclusivity of students with disabilities, I am an official note-taker for a student with disability, and I was recently accepted to be on the Disability Support Services Speakers Bureau, which is an organization that addresses different crowds on the topic of disability, education, advocating, and spreading awareness. In preparation for the future, I am also involved in an organization which focusses on workforce diversity.

Transverse Myelitis did not leave me unscathed; it robbed me of some of my abilities, but it also left me with a far more important one: the ability to put life in perspective. I know I am fortunate. I defied the odds. Now, I plan to take my journey and do something impactful with it.

I would not change my set of experiences for anything. I am not defined by my diagnosis or my limitations; I am empowered by them.

To those of you who do not stare, I thank you. And to those of you who do, I hope this satisfies your curiosity.

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My Transverse Myelitis Story

By Gracie (age 13)

The summer of 2016 is when my life changed.  Every summer I go to my dad’s house in Memphis, Tennessee for about six weeks, and it was almost time for me to go back to my mom’s in Colorado.  I woke up on Saturday, August 6th, not knowing what was going to happen later on that day. That Saturday afternoon is when my journey with Transverse Myelitis began.

It was a humid day in Memphis. I was playing outside with my miniature schnauzer, Sam. We do everything together. We were running and jumping and having a wonderful time. Then I noticed a dog was looking at us from the other side of the fence. Sam and I went to go say hello. I picked Sam up and he stuck his head over the fence and played peek-a-boo with the other dog. It was time for lunch, so we walked back to the house. While we were heading back to the house, I noticed a little pain in the upper left corner of my back. I didn’t think anything of it, so I just ignored it.

After lunch, we went to the grocery store. On our way there, I noticed that the pain in my back was growing. It was uncomfortable, but it wasn’t horrible. Still thinking nothing of it, I said nothing. Once we were in the grocery store, it was worse. I got in the basket because I didn’t feel like walking. Then out of nowhere it got so bad that I had tears in my eyes. My dad’s girlfriend noticed that I was crying and took me home. I was lying in bed, and I was in severe pain. I was vomiting because it hurt so bad. The pain was going away, but I had a tingling sensation on the bottom of my feet. Soon, I noticed that I could not move my left leg, and my right was very weak. I could not feel anything from my breast-line down. I thought that my legs just fell asleep, so I continued to rest.

About one hour later, my dad asked if I needed to go to the bathroom, and I said yes. He asked me if there was something wrong. I didn’t want to tell him that I couldn’t move my leg, but I had no choice. I tried standing up, but I couldn’t. A rush of fear swept through my body. We drove to the emergency room. They had no answers. The doctor just assumed it was psychological. I knew for one thing that it was not that. I was and still am a very happy, life- loving person. They did MRIs and found nothing. We went back home. I was terrified to eat because I couldn’t control my bladder and bowel movements.

The next day I had another MRI. This time they found something. There was a lesion on my spinal cord from T4-T6.  We called my mom, and she flew to Memphis. The hospital in Memphis wasn’t doing anything for me, so we had to do something else. My aunt’s best friend is a doctor in Phoenix, AZ, and she said I needed to be admitted right away.  We were hurrying to find plane tickets, so my mom and I could fly to Phoenix. Everything was happening so fast. I remember watching everyone, and for a split second everything was going in slow motion. It was like I was in my own little bubble.

Once we got to Phoenix, we stayed at my aunt’s best friend’s house for the first night. The next morning we went to the hospital, and I stayed there for three weeks. They diagnosed me with Transverse Myelitis the first day. They weren’t sure what caused it, but thought it was some kind of autoimmune reaction where my spinal cord attacked itself.   While I was there I received plasmapheresis, IV steroids, and one week of inpatient rehab. I was released from the hospital on September 3rd. School started September 6th. I was so happy because I would make it back to Colorado before school started. All I wanted was to be able to be there when school started.

School started and everyone was happy to see me. My friends were fighting over who got to push my wheelchair!  My friends have been with me every step of the way. I am very thankful for them. I have been stressed about school because I miss a lot of it. I get bad headaches, and sometimes I have a lot of pain. I only go to school half days right now because I get tired, and my back starts to hurt, but I have a tutor that comes to my house. The teachers have been so incredibly helpful.

About half way through the school year, I went to Children’s Hospital Colorado in Denver and received IVIG. I have gone twice to the Kennedy Krieger Institute in Baltimore,  Maryland for physical therapy, and I will be going back again in April. My favorite thing about going there is aqua therapy! I have also been going to physical therapy at home and riding my FES bike. I can still do a lot of the same things as I did before, it just looks different. I can dance, and I am learning how to use a sit ski.

I have gained all my strength in my right leg back. I am slowly getting more movement in my left leg and ankle. I am no longer incontinent. I have been setting goals for rehab, and each time I have reached them. And even though I have not gained any sensation back, I believe I will.

Sometimes I don’t want to do my exercises, but I want to get better, so I just keep on going. The past seven months have been very difficult, but my experiences are making me stronger. I have realized the more important things in life like setting goals and working hard to reach them. I am learning to be more patient, and that it is ok to feel frustrated and sad sometimes.  Someday I want to run again, and I believe that I will.

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A Modest Prayer

Robert Slayton was diagnosed with transverse myelitis and wrote the poem below. He grew up in the Bronx and is now a professor of history at Chapman University and the author of seven books, including Empire Statesman: The Rise and Redemption of Al Smith. In 2008, he came down with transverse myelitis and returned to an active teaching and writing career. Slayton has been married to his wife, Rita, for 32 years.

Because of TM, my bladder is partially paralyzed.  As a result, I stand and have to urinate every 1 ½ hours, twenty-four hours a day.  On the rare occasion my sandals slip off, it’s a problem.

A ModestPrayer
By Robert Slayton

Lord—

I know I’m not really your guy, but I thought you’d like this story.

As you know (I assume), I’m disabled.  The other night, my wife needed to get sleep as she was getting up early the next day.  At 12:45 am, my sandals fell off.  As I heard her going to the bathroom upstairs, I asked for help.

Trying to make it as easy as possible, I had the light on brightly and the shoes ready.

Instead, she came down with a flashlight, trying to stay in the dark as much as possible and not really wake up so she could go back to sleep without disruption.  I knocked that idea into a cocked hat, despite her mission of mercy!

I felt terrible.

At 4:00 am she came down to get a beverage.

And, I figured, to shoot me.

Instead, she checked and adjusted my sandals (!) and tucked me in.

Take care of this one, Lord.  She has so much grace

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(Table) Tennis Anyone?

(Table) Tennis Anyone? 
Cindy Hall Ranii

All of us in the TMA Family know that Transverse Myelitis can hit us at about any age, and it can affect us in a variety of ways and degrees. TM blasted me twelve years ago at age 58, and within 72 hours of my first symptom of a backache I was a T-3 complete paraplegic. I have been a wheelchair user ever since, and I credit wheelchair tennis and table tennis as my companions in creating an active and healthy lifestyle.

I have always been an avid athlete, and as soon as I could propel myself in a wheelchair I started to explore ways to continue to pursue sports. Soon after leaving rehab I researched local disability sports programs in the City of San Jose here in California. I called the coach of the wheelchair tennis program who enthusiastically invited me to come and join in.  No experience necessary! At first I needed assistance to wheel from my van to the court, to transfer from my chair to a borrowed tennis wheelchair and to learn the rudiments of playing in a chair compared to playing on my feet. I had played tennis since I was seven years old, so those skills quickly translated to the “two-bounce” sport of wheelchair tennis.

Wheeling on the smooth, flat surface of the court was exhilarating. Outside the court I had found it a struggle to propel myself in a world that is never ever flat, but on the court I again felt the joy of moving through space. I couldn’t run; that was gone to me. But I could really buzz around that court.

I competed in wheelchair tennis for five years and attained a national top-ten rating in the “A Division.” I realized, however, that I would never compete at a world-class level, and also my elbows and shoulders were starting to complain that this was not the best sport for a senior citizen. To complicate things, I broke my leg falling out of my chair on a van ramp, and the doctor recommended that I stay away from tennis for a few months.

The silver lining was that I started to play table tennis, which is just a fancy way of saying Ping Pong. From when I first rallied at the local Senior Center, to three years later when I was winning a bronze medal at the Para Pan Am games in Toronto in 2015, I have loved the sport. It is fast, gentle on the body, a sport for a lifetime, keeps me mentally sharp, is invigorating, can be played anytime, with anyone, it doesn’t cost a fortune to play, and it is ever challenging.

Now I play at least four times a week and have worked with the City of Santa Cruz to expand its program. Our senior group is comprised mostly of able bodied standing players, but it also includes a woman with Parkinson’s, a man with spinal stenosis, a 93 year old with vision challenges, one quadriplegic and myself. I am proud to say that I am the “champ” of the club. And that fact highlights one of the sweet things about Ping Pong in a chair: You can be competitive against standing, able-bodied opponents. My rating in able-bodied tournaments has risen from 400 to 1222, a reputable rating for anyone.

Wherever I play I take every appropriate opportunity to let people know about Transverse Myelitis. So far, I have never found anyone who had ever heard of it before. But now they know that it can have a pretty drastic effect on someone and that it can come out of the blue. They also know that it might knock you down, but it doesn’t have to knock you out.

If you are looking to be active, give table tennis a chance! Whether you are mobile, semi-mobile, a hemi, a para or a quad, Ping Pong is a sport that is guaranteed to be a life enhancer! It’s just fun!

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I didn’t expect to be doing this!

Look What We Can Do
Bodo Hoenen

A few months back, I was on a panel discussion in Cannes talking about girls empowerment. I ended that talk with a statement that I did not think would apply so personally just a few months later, “Imagine the joy in a young girl’s eyes when she realizes, by her work, how empowered she is.” A few minutes after walking off the stage my wife called, she was in the hospital with our daughter.

When life happens

My daughter Lorelei got a rare illness, a viral infection, that was causing swelling on her spine and brain. Over the next few hours, she turned from being the cheeky, playful girl she has always been, to a girl who was struggling to breathe, and whose body was becoming paralyzed. By the time I got to her in the hospital, she had lost the use of her left arm, her core muscles were seriously weakened, she could not walk, stand or sit and struggled to breathe and speak.

She was diagnosed with Acute Flaccid Myelitis, a rare polio-like syndrome, and the prognosis was not good. Out of the few hundred cases so far seen in the US, some children had died, most had continuing paralysis and only a handful (less than 5%) had made a full recovery. We could not accept this!

I’m not broken!

My daughter and I decided to tackle this challenge head on. In addition to doing everything the doctors and specialists recommended, we decided to build a robotic assistive arm she could wear. We got this idea from research in exoskeleton assistive devices that have helped paralyzed people walk again. We would do the same by building an exoskeleton arm to stimulate rehabilitation by allowing her to use her paralyzed arm as normal. We would make it open source, reach out to people much smarter than we are and document what we do as we go. This way, we could also help other children we had come to meet over the last few weeks who are also paralyzed.

Through research, we knew big companies were building similar devices, we just needed to figure out how to build it ourselves. Build it 10 times cheaper and make it 10 times lighter, so that Lorelei, a five-year-old, could use it wherever she goes.

“So, that is what we set out to do, we shot for the moon!”

Now, I should probably tell you that we had little to no experience in robotics. In fact, we had little experience in almost everything we have now done. And that is one of the joys of this story. Through open innovation and the help of others, we can be empowered to do amazing things!

We boiled down the challenge 

During the hospital stay, my daughter’s body was getting stronger, but her left arm remained paralyzed. She could move her fingers and twist her wrist, but it was unlikely that much movement would return to her arm and shoulder. She could accomplish a very slight movement when her arm was in a zero gravity state like when submerged in water. She was able to move it about 10 degrees in either direction unassisted. This meant that at least a very weak signal was reaching her muscles and that not all the motor neurons were completely damaged. If we could figure out how to pick up those signals, we could use it to control the robotic assistive arm and encourage new neural connections to be made.

This assistive arm would also need to fulfill some functional requirements. Lorelei’s shoulder is really weak, therefore, whatever we built could not weigh more than 150 grams. It would also need to be mobile and be able to pick up at least 400 grams many times an hour for at least 5 hours. It would need to be easily modified and, if it was going to be worn often, at school and with her friends, it was going to need to be light, comfortable, and beautiful!

Before too long, we had a rough idea of what we wanted to do: scan Lorelei’s arm to get precise measurements, print out a 3D printed arm brace for her forearm and upper arm, and connect those two with an actuator that would be controlled through sensors that we would embed into the 3D printed braces.

Asking for help

We reached out by recording videos. To start with, we needed advice on what the fundamentals of this device would need. We created a simple design to explain what we wanted to achieve and reached out for advice. Within days, we started getting the support we needed. From Mexico to Hong Kong, people reached out to help us.

After a few weeks, we had a pretty good understanding of all the components we needed to get something working. With a tight budget, we went shopping. We bought an Arduino, an EKG board, various sensors and built an arm rig to test it all out on.

After much help from many people, we moved to creating a few prototypes, ending up with one that worked quite well. It used Lego type building blocks that we put together to test things out with. And now we were ready to move onto the next step.

Learning as we go

We needed to move onto 3D printing. However, we had some challenges with accurately scanning Lorelei’s arm to get the exact measurements we needed. The trouble was keeping her steady on a rotating axis. Usually, you would use an expensive rotating platform but we did not have that luxury. Instead, we used a plate. I would lie on the floor slowly rotating it and soon got a great scan. Sometimes, simple solutions are the best! With the 3D scan, we had all the measurements we needed.

We ended up designing the braces and printing them flat using PLA plastic —PLA plastic can be heated up easily to become flexible, then when it cools down again becomes rigid. This would allow us to heat it and mold it around Lorelei’s arm, allowing for small changes in the design and fit to be implemented on the fly, simply by heating and bending. To ensure we did not burn her arm with heated plastic we created casts of her arm so that we could mold the hot plastic around the casts instead. [VIDEO]

Hitting a roadblock

The muscle sensor we initially started using would sit on the muscle and measure the electric signal using two electrodes. This is a chart of what my arm signal looks like. You can clearly see when it’s relaxed and when I actively pull my muscle.

What the sensor would then do is filter the raw signal and normalize it. We could then set a threshold that would trigger the robotic arm. When I pulled my muscle, the robotic arm would pull, and when I relaxed, the arm would drop down again.

But, the challenge came in when trying to get it to work for my daughter. Her muscle signals were just too weak. We had to set the threshold so low that it would unintentionally be triggered by her heart and other muscle signals.

Creative problem-solving

I explained to Lorelei that her muscle signals were like trains traveling down a track and that we could not get a reliable signal because the track was broken. A few days later, while at a train station, she looked at me with a spark of genius and said:

“Why are we only looking for a train?”

That’s it! Let’s not filter out and normalize the signal, let’s look at the full signal. Coming from a background in computing I knew a bit about machine learning. With machine learning, you can train an algorithm to sift through vast data sets and learn to pick out data points of significance. This is how image recognition and voice recognition works. What if we used the same process on Lorelei’s raw signals coming from her arm, instead of filtering and normalizing the signals. Could we train an algorithm to recognize when she is trying to pick up her arm and move it?

We again created a video and posted this challenge to ask for advice. Soon, we found some interesting options and a company that was doing something similar. After a few emails and a phone call, they sent us an evaluation unit. We attached 17 electrodes to her upper arm: 8 pairs, and a baseline electrode. Each pair would provide us a separate unfiltered signal. Through these multiple sensors, we would be able to look at all the signals traveling through Lorelei’s arm.

Now we could train the algorithm. Lorelei would pull her arm up and it would record that signal data. She would then relax, and try to push her arm down and it would record that data. After a few training sessions, the algorithm was able to recognize patterns out of the mass of signal noise and we could then use it to control a virtual arm. [VIDEO]

That was it! On to the next challenge.

A call for help

We now knew this approach could work. However, the algorithm and technology we used to pick up the signal is proprietary and the costs were well above our budget to license.

Why should this great technology not be available to everyone? We want to build an open source myoelectric signal recognition technology. Over the course of the last few months, a group of innovators from around the world have joined my daughter to build an open source robotic arm that is 10 times lighter and 10 times less expensive than what’s out there. This is our story so far, come join us and make it your story too!

We stand on the shoulders of giants!

I have a philosophy in life that I live by. Everything we do is thanks to the billions that have lived before us. We have the ability to create, innovate and invent but we cannot claim that anything is our creation alone. So much of the inspiration we use to create comes from others. It’s the shoulders we all stand on. Right from the start of this project my daughter and I knew that we wanted to do this, not only for us but for all the kids we have got to know who are also paralyzed by this illness. We hope that soon this prototype will be reliable enough to share with thousands of children like Lorelei.

By openly sharing what we have done and learned, we can help many others just like we have been helped.

You can find us here: https://www.facebook.com/OurKidsCanDoAnything

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Look What We Can Do

Look What We Can Do
Brittany Adkins, M.S.ED., CAGS

I work as a school psychologist and over the years I have seen children and families consistently rise above limits set by the disabilities they face. Sometimes, when things become overwhelming, you see people find resilience and strength that you never thought possible.

In January 2016, friends of ours received news about their two-year-old son, Nolan, that would change life as they knew it forever. Over the course of an hour, they saw their active son become paralyzed from the neck down due to a very rare neuro-immune disorder called Acute Idiopathic Transverse Myelitis. The next few months were full of uncertainty and introduced them to tons of new vocabulary—inpatient rehabilitation, locomotor training, plasmapheresis treatments, etc. As time went on, they tried to find a new “normal” in the midst of chaos. While the physical challenges Nolan faced were obvious, the emotional challenges involved in helping Nolan to understand his diagnosis were even more difficult.

I initially set out to write Nolan a story that would emphasize all of the things that he could continue to enjoy despite his diagnosis. As the project evolved, Nolan’s parents explained that resources for young children in his situation are limited. We decided to move forward with the publication process to spread awareness about Transverse Myelitis and to raise funds for pediatric spinal cord injury.

Nolan and his family certainly continue to have challenges and tough days, but they wake up every day fighting for optimism, choosing joy, and working to give him as much independence as possible. Nolan’s continued recovery can be followed at https://www.facebook.com/getwellnolan/.

Nolan and his loving family served as my inspiration for a tale that I hope will inspire others. I am very excited to announce that our book is now available on Amazon and through Barnes & Noble. “Look What We Can Do!” is a light-hearted tale of Nolan, a little boy, and Teddy, his best friend, as they cruise around on Nolan’s new power wheelchair. These two adventurers find joy and humor in the world around them, despite the new obstacles they face.

Look What We Can Do Available on Amazon and Barnes & Noble!

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Coming to America

Coming to America
Abhijit Ganguly

In 2003, I was diagnosed with TM. I had never heard about this disease. The doctor at the hospital told me, “It’s an infection in the spinal cord.”

Later, I went to a veteran neurologist for follow up. When I asked him about the disease, he said, “You had a disease, and now you are better. It’s the job of a doctor to know about the disease. You shouldn’t worry so much.” I was frustrated. I was depressed. Finally, I went to a nearby cyber cafe. I typed ‘Transverse Myelitis’ and found the TMA website. I wrote an email. I thought I wouldn’t get any response, but I did! That was how I met Sandy Siegel. After a couple of years, I became the Support Group Leader of India.

Sandy has been a rock for me.  He’s always been there for me.

A few years ago, David (Sandy’s son) and his wife, Kat, visited India to attend the wedding of one of their Indian-American friends. It was in a city on the western side of India. I live in Kolkata, on the eastern side. Sandy arranged airline tickets for me so that I could spend a couple of days with David and Kat. It was my first flight! When I hugged David goodbye, deep down I was missing Sandy. I wanted to meet him. Little did I know that Sandy would create the opportunity for me to experience another ‘first’ in my life.

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At the end of July this year, I finally got the opportunity to meet and visit with Sandy! I still can’t believe I was there! It was an amazing experience. I will never be able describe my feelings in words. I got to meet Pauline. What a lovely sweet lady she is! I got to see her classroom and her school. She is very caring. I got to meet Kazu. I had seen photographs of Kazu but it was very different to finally meet him.

I experienced so many ‘firsts’ during this trip … flavored water, peanut M&Ms, a peach, pancakes (chocolate pancakes – Pauline’s favorite), a burrito – there were so many!  I made my own salad for the first time! I got to meet Sandy’s mom. She is an awesome person. We went out to lunch and she was very eager to learn about my culture and life in Kolkata.  We got to see her apartment. Sandy took me to a book store and got me a couple of novels from his favorite author, Kurt Vonnegut.

abhijitmom7-26-2016-1Sandy drove me around Columbus. We visited the Ohio State campus which was huge.  Sandy, Pauline and their children all went to OSU. We went to a beautiful park and took a long walk in the woods along a river around sunset.  Sandy also took me to downtown Columbus.

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We went to the Columbus Zoo with David and his kids (Leo and Stella). It was a great experience. And we had Dippin’ Dots ice cream!

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There were people from around the United States and Canada who knew that I was coming to the US. They made a trip to Columbus to spend a couple of days with me. One evening we met at a restaurant and spent the evening together. It was very emotional for me. I got to meet Sally Franz, my TM friend who has always guided me with my writing (I write a blog called Kolkata Konnector). She said a prayer for me for when I was going through tough times. I spent a day with Sally. She took me to a park and to a nice restaurant, and we went to see the new Star Wars movie, and watched it in reclining seats! Mindy King, who is one of my first TM friends, also visited me with her husband, Larry. She has been a great friend – always there for me. I got to meet Sheila Gaspar whom I call my ‘Canadian mom.’ We have been talking to each other practically every day for many years. Finally, I got to give her a “real” hug. I got to spend a day with her, her husband Kenny, and her cute granddaughter Riley. They took me swimming for the first time in a hotel swimming pool and Sally taught me few simple swimming techniques. Josie sent me a very generous and kind gift while I was in Columbus, and I love the Little River Band t-shirt Rich sent me.

I came to the United States to attend the TMA family camp at The Center for Courageous Kids. I drove down with Pauline, Kazu and Sandy. It was just amazing for me to be at camp with so many people who have the same diagnosis that I have. It was like being with one big family. The kids were so inspiring. Everyone was so friendly and so positive.

I got to meet my dear friend, Debbie Capen, from the TMA, and her husband, Michael. Debbie and I have been friends for a long time. It was a great feeling to meet her in person. She often checked in on me at camp to make sure I was okay. It was wonderful to see Dr. Anjali Forber-Pratt. I had met her few months back when she was in Kolkata. This time I also got to meet her service dog, Kolton. I met Roberta Pesce of the TMA in person. I have been communicating with her over emails for TMA work. It was great to finally meet her in person. It was so nice to meet GG and Timi of the TMA.

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I was very much looking forward to the education program and to meeting the doctors. The education program was so informative. It was nice to see how the doctors were so friendly with everyone. And it was just amazing watching the doctors playing messy games with everyone! The interaction between the doctors and the families and children was really touching.

I met Dr. Sara Qureshi who is from Pakistan. She spent a lot of time with me talking about my issues and also answering a lot of my questions. She is such a caring doctor and a good person.  It was very special getting to meet Nancy and Bill and their kids. They are Native Americans and live on a reservation in Montana. Bill gave me a gift; one of the t-shirts he had with an American eagle. I was so touched by his generosity.

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I got to do so many things at camp that I had never done before – fishing, boating and archery. The meals were great, and we had ice cream after every lunch and dinner. The volunteers at the camp were great and very encouraging. The fireworks on the last day of the camp were simply awesome.

I love music. After we got back from camp, Sandy took me to Cleveland so that I could spend a day at the Rock and Roll Hall of Fame. I was speechless – loads of information, photographs, the clothes they wore at concerts, and tons of history from my favorite musicians. I had a rocking time! We also saw the stadium where the Cleveland Browns play and Sandy took me for lunch at a bar near where his son used to live in Cleveland.

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The day before I had to return to India, we spent the day with David, Kat, Leo and Stella. The kids are super cute. It amazed me how they interacted with me and accepted me so easily; like I was part of their family.

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On my flight home, I had a layover in Washington DC. Chitra Krishnan, the executive director of the TMA picked me up from the airport and she took me out to lunch at an Indian restaurant. I had Bengali food!

I think about the trip every moment.

THANK YOU, SANDY. THANK YOU, PAULINE. You don’t know how much this trip meant to me! It’s priceless. I felt so happy meeting you in person! I left my heart there! It’s amazing to see the amount of dedication you put behind TMA work. I am so proud to have you in my life.


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