(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!

Think people should hear about this?

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

Think people should hear about this?

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!

Think people should hear about this?

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.

leostellatimeabhijit_20160807_0013

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.

abhijitdowntowncolumbus_20160726_0007

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!

abhijitleostellazoohighbanks_20160729_0005
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.

cckthursday_20160804_0047

cckwednesday_20160803_0042

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.

cckwednesday_20160803_0040

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.

abhijitcleveland_20160806_0024
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.

leostellatimeabhijit_20160807_0027

leostellatimeabhijit_20160807_0001
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.


image-1-1030x681

Think people should hear about this?

How I Became U.S. Paralympics Number One Fan

How I Became U.S. Paralympics Number One Fan 
Eve Hampton (and Ari)

If, when scrolling through my posts on Facebook or Instagram, it seems like I know a lot of Paralympians, I do. While Europe has jumped ahead of us and has professional wheelchair basketball leagues with the fans and compensation to match, adaptive athletics are still very much grassroots organizations in the United States.

I met my first Rio Paralympian when I was diagnosed with Transverse Myelitis at age 13 and entered a rehabilitation program in Seattle where a 6-year-old was completing her stint in rehab after being paralyzed in a car accident. I bet Chelsea McClammer doesn’t even remember, she was tiny! Chelsea, in addition to her claim to fame as the youngest member of the 2008 Paralympic U.S. Track and Field Team in Beijing, has already won a silver and bronze in Rio and is poised to be back on the podium throughout the rest of her events.

Speaking of Transverse Myelitis, sometimes I think that there might be a statistical significance to the number of athletic people who have been diagnosed with TM. In addition to track stars Steven Toyoji and Amanda McGrory, tennis phenomenon Dana Mathewson also has Transverse Myelitis. I met Dana and her mom at a TMA symposium and helped connect her to the incredible sports camps and athletic community in her hometown of San Diego. Those camps were a big part of my summers growing up and provided not only an introduction to lifelong friendships and new sports, but also a much needed respite in sunny California for my parents and brother who enjoyed a San Diego beach vacation for a week each summer.

Amanda McGrory and Steven Toyoji at the Paralympic Opening Ceremonies in Rio.

Dana Matthewson and her mom, Arlene Wong

Right after leaving rehab, I attended Camp Casey for the first time, a Kiwanis sponsored, free overnight summer camp for disabled children in Washington state. I wasn’t too happy to be there, the camp overlooked the soccer camp I had planned to attend that summer. To add insult to injury, I was put in the little girls’ barracks (Camp Casey is located at Fort Casey built in the 1890’s). This was, quite frankly, an affront to my newly teenage-self, I mean, I was a Bat Mitzvah for crying out loud, ergo, an adult.

But, as it turned out, like so many things in life do, being a “little girl” was one of the best things that could have happened to me because my bunk mate was Desiree Miller. It took many more summers of friendship at the camp we grew to love and Instant Messaging on AOL (yeah, we’re old) to convince Desi to play wheelchair basketball, but, during our senior year of high school, she joined our Seattle juniors team and was immediately offered scholarships at all of the universities that had women’s wheelchair basketball programs.

Ari cheering on Desiree Miller

Desiree, who now starts for Team USA, accepted the offer from Alabama, and while she chose to Roll Tide, I chose to Bear Down and attend the University of Arizona. As I was starting my freshman year, the senior firecracker on our team, Alana Nichols, was just finishing her tenure at U of A. I could write another essay about Alana, but I don’t have to because the New York Times already did that for me!

My junior and senior year as a Wildcat were spent living in an apartment with Jessica Radmilovic, who is the tricking world-record holder in disabled water-skiing; water-skiing is not a Paralympic or Olympic sport because of the motorized boats used to pull the skiers. Along with Jessica, my college apartment roommates included two able-bodied women and our menagerie of dogs, rats, mice, ducks, guinea pigs, and a parade of couch surfers from around the world. Yes, our landlords knew about the ducks. It was during these years that we spent a lot of time with the many Team USA quad rugby members living in Tucson and I became close friends with Jenn Poist, who is also on the current Team USA women’s wheelchair basketball team.

20160613_132222

In graduate school at Arizona State University, I was fortunate to be able to play for the Phoenix Mercury wheelchair basketball team and learn from my coach and Team USA legend, Jennifer Warkins Ruddell, and class 1.0 super star, Emily Hoskins. These two veterans of the sport won back to back Paralympic gold medals in Athens and Beijing as members of Team USA’s women’s wheelchair basketball team.

I moved back to the Pacific Northwest with my then boyfriend, now husband, Bob Pratt, who, by the way, I met as a graduate student while we were volunteering as counselors at that same summer camp in San Diego that Dana Matthewson and I attended as youths. In Seattle, I was able to not only join the newly formed Storm wheelchair basketball team, but also begin playing with our neighbors to the north on the Inferno, the women’s team in Edmonton, Alberta. My teammates include past (Karla Tritten and Tara Feser), present (Arinn Young), and no doubt future Team Canada athletes. While I am obviously a proud Team USA supporter, this house also flies a maple leaf during Team Canada’s games. Not to mention, the current starting class 1.0 for Team USA, Darlene Hunter, way more than filled my spot this past season while I was pregnant with and taking care of a newborn Ari.

Bob took a job with Intel in Oregon and following our wedding, I joined him in Hillsboro, a suburb of Portland, also known as the Silicon Forest (although Hillsboro is actually farmland). Everywhere I went in our beautiful apartment complex in Orenco Station, I kept getting mistaken for somebody else. This is pretty weird because how many young(ish) paraplegics with long dark hair could there possibly be in one small apartment building? Well, it turns out, two.

It was when my husband mistook this other woman for me that I figured it was time to find this other person and introduce myself. I actually didn’t have to look far, because it turned out that Ann Yoshida was living only 3 doors down. Ann, who lives in Hawaii, was working on her doctorate in Oregon, so, naturally, we began training together, she for outrigger canoe, and me for an upcoming trial at the USOC training center in Colorado Springs for Team USA’s women’s wheelchair basketball team. We followed my assigned weight lifting schedule and set up our matching rowing machines in her garage. Let’s be honest, erging is probably the best workout you can get on land, and is great cross-training for just about any sport.

I was promptly cut during tryouts and began working on my next goal: motherhood. Ann then got to (read had to) listen to my many plans for pregnancy and parenting while we rowed together as she prepared for her international competitions.

When the International Paralympic Committee made sprint kayaking instead of canoeing the sport that was going to debut at the Paralympics in Rio, Ann Yoshida switched gears and began training for kayaking. I can’t begin to tell you how impressive it is that she made the Paralympic team within a year of making the switch. Ann moved back to Hawaii, and we moved to our house closer to the city of Portland.

As a full-time mother to our 8-month-old son, I have relied on the priceless advice of mothers who use wheelchairs who also happen to be current and/or former Paralympians. If it wasn’t for the women I have competed against, I would have no idea about the secrets of successful parenting from a wheelchair. Women like Patty Cisneros (3x Paralympian, Team USA, wheelchair basketball) Christina Schwab (currently competing in her 5th Paralympics, Team USA, Wheelchair Basketball 2000, 2004, 2008, 2016, and Athletics 2012), Jessica Cloy (4x Paralympian, Team USA, Athletics), and Jessica Vliegenthart (2012 Paralympian, Wheelchair Basketball, Canada). These mothers taught me how to independently get a baby in and out of my car, adapt a crib, and that overalls aren’t just adorable, they also double as a safe way to pick a mobile baby off the ground when your abdominal muscles are paralyzed.

ari-8-31-16-21-copy

img_20160904_163832

Today, I couldn’t be happier to be Team USA’s #1 fan (really, I think I might be). I feel like I won all the gold medals in the world already because I get to cheer along these incredible athletes and friends with my sidekick, and one of Team USA’s youngest fans, Ari.

Think people should hear about this?

Our Paralympic Experience

Amanda McGrory (Beijing ’08, London ’12, Rio de Janeiro ’16) and Dr. Anjali Forber-Pratt (Beijing ’08, London ’12) were diagnosed with transverse myelitis at a young age. Anjali is also a member of the TMA Board of Directors.

Paralympic fever is upon us, and we wanted to share some of our current and past Paralympic experiences and encourage you to support Amanda McGrory and others from the TM, NMOSD, ADEM community who will be competing on Team USA in the Rio games.

Getting involved in competitive activities 

AFP: I got sick with TM as a baby at 4.5 months old in November of 1984. I was first introduced to the world of disabled sports when I was five years old. I was intrigued by seeing wheelchair racers competing in the Boston Marathon and wanted to get involved. I was so blown away by seeing wheelchair racers in the marathon that I dressed up on Halloween as the winner of the Boston Marathon for many consecutive years! There was a weekly Saturday sports clinic for kids with disabilities about 45 minutes away from my parent’s house at the Massachusetts Hospital School in Canton, MA. At this clinic, I had the opportunity to try nearly every sport possible and took a strong liking to both track and downhill skiing. By the time I was nine years old, I went to compete at my first Junior Nationals hosted annually by Adaptive Sports USA for youth with disabilities.

AM: I was diagnosed with TM as a kindergartener in 1991. After noticing that I was struggling with my transition from able-bodied kid to wheelchair user, my parents started searching for ways to get me more involved in the disability community. They finally stumbled upon a grassroots wheelchair sports program starting up in Philadelphia, and after one practice, I was hooked. Despite being a scrawny little pipsqueak, “tenacious” is a word that was often used to describe me early in my sports career, and eventually that tenacity paid off, securing me an Athletics Scholarship to the University of Illinois in Urbana-Champaign.


Games experience

AFP: I made the decision to attend college at the University of Illinois in Urbana-Champaign, known for its accessibility and disabled sports programs. While there, actually just after I started graduate school, I decided to get more serious about my racing career and made my first national team in 2007 representing the USA at the Parapan American Games in Rio that year. I then was fortunate enough to earn a spot on the Paralympic Games team for Beijing in 2008 where I raced in the 100m, 200m, 400m and 4x100m relay and came home with two bronze medals in the 400m and 4x100m relay team with Amanda McGrory. If you can even imagine walking into a stadium of 91,000 screaming fans are all there to support you, your dream.

The experience was incredible. It was literally a longtime childhood dream come true. I also competed on Team USA in London at the 2012 Paralympic Games in the 100m, 200m and 400m. And while London did not go the way I had hoped athletically, I came home with my best finish being 5th in the 200m, one of my most treasured memories from London is that two female athletes in my division (T53), one from Bermuda and one from Ghana, I had helped mentor and to get them involved in sports several years before, and they both were there on the start line for
all my races!

AM: Like Anjali, my “competitive sports” career really began at the University of Illinois. Although the scholarship I received was basketball specific, I was able to dedicate my off-season to the wheelchair track team. Frustrated with lack of progress in my racing career, I decided it was time to focus more on basketball. Fast forward two years, lots of long conversations, and one gigantic bribe later, and all of the sudden I was a marathoner. I felt like I had finally found my calling as an athlete, and slowly, basketball, as well as my dreams of becoming a gold medalist sprinter, took a backseat to long distance racing. I qualified in 2008 (with Anjali) for my first Paralympic team, and was 100% pumped to race in Beijing. I returned home with four medals, including a gold in the 5000m (silver in the marathon, bronze in the 800m and bronze in the 4x100m relay).

I spent the four years between games traveling the world and racing marathons, which has to be one of the coolest jobs ever. Unfortunately, despite qualifying for the London 2012 Games and feeling strong in the lead up, I came home empty handed – my best finish being 4th place in the marathon. Dis-appointed as I was in my performance, it gave me a good opportunity to reflect back on my goals, and set new ones for the future.


Challenges in the lead up to 2016 U.S. Paralympic Trials 

AFP: I shared in a previous TMA Blog about some of the medical complications I have had since competing in the London 2012 Paralympic Games. The short version is that since September of 2012, I have had five major spinal cord surgeries, and celebrated one year without any surgeries or hospitalizations a few weeks ago at the end of June 2016. That said, I can honestly say that I never in a million years thought that competitive wheelchair racing back at the Paralympic-caliber level was ever going to be a reality again. Having fought hard to simply regain basic life functioning and to have stable health, I was not sure that my body would tolerate the seating position in a racing wheelchair again, or if it would cause spikes in my nerve pain, or increase of spasms or what.

Despite all of this uncertainty, once my health did finally stabilize, I began to realize just how much I missed com-petition and training and being active. I went to see Amanda McGrory and my coach Adam Bleakney at the University of Illinois, also now a Paralympic Training Center, in February to see if I could tolerate just sitting in a racing wheelchair again. I was extremely lucky to find out that I could!

When I left Champaign in February, I was thrilled just to have this small piece of my past back again in the forefront. I started training again, not as rigorous as I would have liked, but I was also trying to be cautious to not create more medical problems for myself and to truly ease back into it. I built up my tolerance which started as only being able to sit in the racing chair for no more than 10 minutes at a time and slowly increased to being able to tolerate an hour+. I began pushing regularly about three times a week. In May, I wanted to get a benchmark of where I was at in terms of a time on the track, just for me. I competed in the Dixie Games in Florida, and surprised myself that I ran an entry standard for U.S. Paralympic Track and Field Trials. I knew I was a long way off from a national standard to qualify for Team USA, but considering the years of uphill battles, to simply qualify was an incredible feat to me.

AM: Though not specifically medical in nature, I too had a handful of athletics-related frustrations and setbacks in the lead up to Trials. After my botched performance in London, I had difficulty regaining my stride again. My confidence was shaken, and my performances inconsistent. I felt like I was putting a lot of time and effort into training, and not seeing any results. Conversations with friends (including Anjali) and my coach, finally convinced me that it was time to make some drastic changes. For the first time in almost 10 years I changed up my equipment, adjusted my training plan, gave up on my pescatarian diet, and even applied to graduate school. It was a whole life refresh, and it WORKED. I was training well, putting up some of the fastest times of my career, and for the first time in four years, genuinely excited about racing.


U.S trials and team selection 

AFP: After quite a bit of thought and reflection on whether or not I should go to trials or not, I decided, why not? What did I have to lose? I was grateful for my friends, including Amanda McGrory, and supporters who encouraged me to see it through. The struggle for me was that I did not want to be an athlete showing up at the most important meet in the U.S. this season without having put the work in to get there, or look like I was coming out of the wood-work with expectations of making the Paralympic team without having been at several other key competitions throughout the season and recent years. Thankfully, my friends pointed out to me that the life circumstances and the medical complications I was facing were to blame, and that I had put a lot of work in just to get back into a racing chair and to run an entry time.

For me, going to trials was a personal journey and something that I chose to follow through not with expectations of making the team, but rather to prove to myself that I could reclaim my life, finish the race and have fun. I raced in the 100m at trials, and I finished the race and had fun. Even though I did not make the Rio Paralympic team, I hope this is just the beginning of a new athletic chapter for me.

AM: Whoa! Trials time! After a great racing season, I couldn’t wait to test my fitness and see how I stacked up against the rest of the American wheelchair racers. For the first time ever, each and every event I competed in had at least five talented athletes competing for only three Paralympic slots. Although this put a little more pressure on me to perform my best, I was confident that my training and performance from earlier in the season would put me in a position for success. After three super competitive days of racing, the team was announced. My top three finishes from the weekend secured me start rights in the T54 women’s 800m, 1500m, and 5K. Add in qualifying times from earlier in the season for the marathon and the 4x400m relay, and that’s a pretty full schedule!

Looking ahead to Rio

AM: Every Olympic and Paralympic Games is surrounded by its fair share of controversy and media drama starting from the day the selection is announced, all the way through the closing ceremonies. For anyone who has watched the news or read a newspaper in the past few months, it comes as no surprise that the Rio Games have not been exempted from the trend. Crime, pollution, Zika…and the list goes on. As an athlete, the best thing I can do in this situation is focus on the things within my control, rather than those that are not. For the next two months, I will eat, sleep, and train to be as strong and prepared as possible to face off against the best athletes from around the world.

For the first time ever, NBC has signed on to broadcast a record number of events from the Paralympic Games. Additionally, each and every event in every sport will be live webcast around the globe. If you’ve never had the opportunity to watch elite adapted sports, I strongly recommend you check it out. I promise, it will be like nothing you’ve ever seen.

Good Luck to U.S. Paralympic Track & Field Athletes Competing in Rio 2016! 


Amanda McGrory
Twitter: @alittlechipped | IG:  alittlechipped | fb: mcgrory.amanda
Diagnosed with: Transverse Myelitis
Classification: T54
Rio Events: 800m, 1500m, 5000m, 4x400m relay, marathon


Dr. Kerri Morgan
Diagnosed with: Transverse Myelitis
Classification: T52
Rio Events: 100m, 400m


Rachel Morrison
Diagnosed with: Transverse Myelitis
Classification: F51

Rio Events: discus and club throw


Steven Toyoji
Twitter: @steventoyoji | IG:  sstoyoji | fb: Team-Toyoji-44477058569434
Diagnosed with: Transverse Myelitis
Classification: T52
Rio Events: 400m, 1500m


James Senbeta
Twitter: @SenbetaJ
Diagnosed with: Transverse Myelitis
Classification: T54
Rio Events: 800m, 5000m, Marathon


Dana Mathewson
Diagnosed with: Transverse Myelitis
Classification: T10 Paraplegic

Rio Events: Women’s Open Singles and Doubles Tennis


Think people should hear about this?

I Win More Everyday

My name is Aleksandra. I have skimmed through this blog several times, and have read many stories of people who share the same story. On December 9th, 2015, I was diagnosed with Transverse Myelitis (TM), a diagnosis I have grown to fear and hate. TM hit me like a freight train, and that is not an exaggeration.

Before December 9th, I was an active, health conscious and optimistic18-year old girl. My feet were my primary source of transportation. I walked between 4-6 miles a day for school, work; everywhere. I felt quite invincible. Then, on the evening of December 9th, my fiancé and I decided to go out to town to spend some time with friends. We enjoyed our time at a local restaurant until I got up from our booth and felt a sharp, breath-taking pain between my shoulder blades. Assuming it was a very bad muscle pain from my workout earlier in the day, I tried to ignore it. Only when it started to radiate into my arms and torso to the point where I was slouching like a hunchback in order to relieve even the slightest degree of pain, did I express my concern.

I remember the fear and pain that I kept inside myself, and held a blank, mute expression on my face as I grabbed the pool stick to break for a game that we were playing with our friends. I lifted the stick and knelt down, and that’s when I realized I no longer had control over my left arm. I tried to bring it up, but it refused. My  fiancé’s face expressed the greatest look of concern, and he insisted on taking me to the ER right away. Being the stubborn person I am, I dismissed it and continued to try and play. I couldn’t process what was happening to me and I was in denial. Was I having a stroke? Is my heart giving out on me? Did I get poisoned?

My thoughts were interrupted by the silence around the pool table, and blank expressions on everyone’s face who saw me. I had not noticed my other arm go limp, and my legs unable to support my weight anymore. It was time to go to the ER. My fiancé and his friend carried me to the car, and they were just as scared as I was. They had to remain calm, and think on their feet as they realized I had progressed within an hour to being paralyzed from the neck down.

By the time we arrived at the ER drop off zone, which was only 20 minutes, I could no longer move. I was transported by wheelchair from the car. Everything is a blur from that moment on while being admitted. I just knew that I was dying. And I couldn’t let go of my fiancé for a second, afraid that those were the last moments I would have with him. Although I was semi-responsive to the nurses who hovered over me, my mind was in a different place. I began to have flash backs of my life, all the lovely things I have experienced, all the people in my life, the things I have done, and the pleasure of spending my summer with a man who turned out to be my guardian angel. I had never known fear until that day. I was brought in and taken to a room minutes after arriving at the hospital. I knew that wasn’t a good sign. That meant that I was a critical case above all the people who were in that waiting room.

I was told to undress, but I couldn’t. I was told to give a urine sample, but I couldn’t. I collapsed in the bathroom, unable to press the help button to call the nurse who was standing outside the door. I yelled and yelled until she finally heard me. They brought me back to my room. All I remember is hearing a code called and I was taken away into another room. Poked with needles 15 times, I cried and begged them to stop. I was in so much pain but I still couldn’t move. I couldn’t wipe the tears off my face. I couldn’t hear or see anything around me. Everyone seemed so worried, so confused, and so perplexed. They didn’t know what to give me, what to do-nothing. Thankfully they did rule out a stroke, but they couldn’t figure out what could have caused any of this. I fell asleep and woke up in an ambulance in the morning. I was being transported to a different hospital and assigned four different doctors.

Two MRIs, two CT scans, and a lumbar puncture later, my neurologist came into the ICU room that I had been assigned and gave the diagnosis – Tentative Acute Transverse Myelitis. I had never heard the name in my life. All I remember is being angry when he said tentative. Did he understand my pain and fear? Did he understand that tentative is not what I wanted to hear? What is really wrong with me? You are a doctor. Help me, please! But I stayed mute. Tears just trickled down my face and a blank expression while he explained to my fiancé and me what it was, how they think it works, and the prognosis. He explained that no signs of infection were found, and that they didn’t know what had caused the autoimmune response.

I was given intravenous steroids and copious amounts of hydrocodone. The opioids did nothing but got me high enough to not care, and to fall asleep for 12+ hours. I was visited by friends and family, and my fiancé who stayed in the hospital with me 20 hours a day, sometimes even spending the night in the empty hospital bed next to me.

The week in the hospital felt like months. I couldn’t do anything on my own, even urinate or control my bowels. It was torture. I felt helpless. My depression grew stronger by the hour. It was the holidays, my favorite time of the year. I watched the holiday commercials on TV of gorgeous women, loving happy couples, and I began to envy anyone who was able to move their body and do simple things like go to the bathroom and walk around and decide when and where they want to go. I felt like no one appreciated just being able to stand or move their body. I wanted death. I couldn’t stand a life like this. It had barely been a week and I was already having suicidal thoughts. Was this going to be the rest of my life? Is this all I will ever know from here on out? All my goals and ambitions of getting a PhD and going to the top medical university in Los Angeles just withered away within days.  I prayed that I would awaken from this dreaded slumber but geez, I couldn’t even pinch myself if I wanted, better yet, would I even feel it? The hilarity. Gallows humor kept me entertained.

Unable to tolerate being in the hospital anymore, I demanded to be discharged, and even bluffed to leave against medical advice. Finally, I was discharged the following Thursday, making it a week. All I remember is the horrific pain I felt every where in my body down to the bone, and trying my best not to puke my guts out. I made it home. I smelled like urine and my hair was globs of oil. But I was relieved to be in a bed, in a place I knew, around people I love. I felt a little more human.

To keep it short, the days and weeks following consisted of more depression, more embarrassing and helpless situations on my end, and yet trying to feel as normal as possible.

Slowly, I began to recover. First one finger at a time, one toe at a time, then holding a fork, picking up a cup of water, brushing my teeth, and putting on make-up. I started to regain hope in myself. I knew who I was, and I started remembering the strong and stubborn person that lived within, who wouldn’t let anything stop her from achieving her goal. I was feeling myself again. I felt hopeful. I wouldn’t let this devil of an illness change who I am, and break me. I fought the sickness and I win more every day.

I pray for everyone who suffers with TM, and I genuinely hope that the odds will be in your favor.

Thank you for reading my story.

Think people should hear about this?

My Story with ADEM

My name is Darren Clayton. I am 31 years old and live in Stillwater, Oklahoma. I would like to tell my story about being diagnosed with Acute Disseminated Encephalomyelitis.

On the evening of November 2, 2014, I was having horrible pain in my lower back and felt like there were ants crawling on the inside of my skin from my waist to my neck. I drove to the emergency room and while there, they started doing lab work and running tests to see what might be wrong. Before I go any further I will say that I had been sick with flu-like symptoms for 2-3 weeks prior to this. I had a fecal test and was aware that I had gotten Campylobacter Jejuni and Cryptosporidium and was given antibiotics. I had felt like I was getting somewhat better when this hit me all of a sudden.

While waiting for results from the lab work at the emergency room, a nurse came in and asked me to give a urine sample. As hard as I tried, I could not urinate. While waiting in the emergency room, I lost all feeling from my waist down. The nurse came back in every few minutes and started scolding me about not being able to urinate, although there was no way I could.

The doctor and nurse advised me that I probably just had a slipped disk and told me to go home and go see my family doctor the next day. I called my wife to come pick me up and the nurse put me in a wheelchair in the lobby while I waited for my wife. I made it home and literally crawled from the vehicle inside the house and up the stairs to my bedroom. I laid there for about 30 minutes and had to pee so bad that I felt like I was going to explode. After about 45 minutes my wife called the ER and spoke with the nurse who had ‘taken care’ of me. The nurse asked me if I had taken the medicine that they had given me for anxiety and told me that I just needed to calm down. After my wife had spoken with her and got pretty agitated, I waited a few more minutes to see if I could pee and realized I couldn’t.  With so much pain in my back and feeling like my bladder was going to explode, my wife called 911 and had me transported back to the ER where they used a catheter to empty my bladder which was 4 times as full as normal.

They then transported me to a hospital in Oklahoma City, OK where I was met by a group of doctors, nurses and neurologists. They immediately did a spinal tap and the next day they told me that I had Transverse Myelitis. They first thought that I had Guillain-Barré Syndrome and started treating me for that but after doing an MRI they had concluded that I had Acute Disseminated Encephalomyelitis. They moved me to ICU and I was told they would keep me there until they were sure that the paralysis would not move up above my lungs and they would have to put me on a ventilator. While in the ICU, a team of neurologists came in and were discussing my condition, as they said that it was so rare and had never seen a case like it, and were trying to learn from it and figure out what could be done. After about 5 days, I was finally able to move my left big toe. Within two days they had moved me to a regular room and started taking the proper steps to admit me into Jim Thorpe Rehabilitation Hospital (to whom I give a lot of credit to why I am walking today). I was moved there and started inpatient rehabilitation. I had neurologists and doctors coming in explaining what this disease was, the chances of coming back from it and how difficult it would be. I would say that this was a miserable time and I was down in the dumps, but that came later. I started out doing therapy twice a day, just trying to learn to walk again. I had lost over 20 pounds and was so weak it was pitiful. A doctor had come in and told me that I may never walk again and told me that my chances of walking again were about 33%. I then said that there was no way I was going to be in a wheelchair for the rest of my life. At the time my son was 6 years old. I couldn’t imagine not being able to ride bikes with him, play with him outside and live a life that was not somewhat normal. I prayed to God that he would help me walk again. “If nothing else comes back, even if I have to use a catheter or have other life changing problems, I HAVE to walk again” was my prayer.

I was so determined and motivated to walk that I worked so hard every time I had therapy and between therapy while lying in the hospital bed I was doing something to try and strengthen my legs. At that rehab center I was assigned a therapist who worked with me every day and gave me motivation and kept my spirits up when they seemed to get down. They had a type of robot-machine they put me in which helped train my muscles to walk normal again. I will always remember the first time that I was able to walk about 200 feet around a room without any help and it was one of the happiest times of my life. After about 2 weeks in rehab (almost a month after my initial paralysis), I was released and was able to go home and start outpatient rehab. As soon as I got home I got in touch with a personal trainer that I had used before and started back on full body workouts and worked extremely hard to gain muscle back and get back to somewhat close to how I was before. While being sick, I had lost over 20 pounds and lost about 75% of my muscle mass. (Before I got sick I was bench-pressing almost 300 pounds and when I got out of rehab I could barely bench 85 pounds). I continued to work out daily.

Then came the time when depression kicked in and I felt like I was going crazy. While in the hospital they had put me on medicines for depression along with all the pain pills and other drugs to help me recover. One night I was so stressed and feeling hopeless that I flushed all of my pills down the toilet (pain pills, depression meds, anxiety meds). I was also told (and experienced) that I might suffer some ED (erectile dysfunction) from this which I have to come extent.

To conclude, I want to say that this happening to me was one of the best things that has ever happened to me. I was always a great father to my son but I believe that this brought me back down to earth, made me realize what was important in my life, made me see who was there for me and who would stick by me, who my real friends are and how much I could really handle.

In all of this I know I couldn’t have done it without my wife, God and the support and prayers of my loved ones and especially the faith I had and have in God. Every day I struggle with things from this horrible disease but I know that I can overcome all of these things with faith in God and support from my wife and family. If anyone encountering this has any questions or needs any support don’t hesitate to contact me at my email or phone number.

God Bless you all,
Darren L Clayton
256-529-1419
darrenlclayton@yahoo.com

Think people should hear about this?

Our Acute Flaccid Myelitis Story

I’ll never forget the morning of June 19, 2013 when I took a pregnancy test that was positive! Just to be sure, I took two more! All positive. That afternoon I picked my husband, Mitch, up from the train station with a gift for him revealing we were expecting! We were both ecstatic for the new journey we were about to embark on.

We prepared like most first-time parents do; setting up the nursery, reading books on birth, schedules, sleep and more! I completed the genetic screening, glucose test, anatomy/organ development ultrasound which all came back normal. Mitch and I felt as ready as we were ever going to be as first-time parents. What we never prepared for was what happened on October 3, 2014.

Our beautiful baby boy, Noah, arrived March 2014. Ten fingers, ten toes, perfect from head to toe! We survived the first few months of sleepless nights and soon enjoyed a daily rhythm. We enjoyed getting into the groove of becoming a family of three. September rolled around and sweeping the news were stories about enterovirus D68 (EV-D68). Noah had come down with quite a few colds that month. With a combination of EV-D68 in the news and Noah’s colds, we became frequent flyers in our pediatrician’s office. Noah presented with a very typical upper respiratory infection and because he wasn’t wheezing, there didn’t seem any reason to be alarmed.

It was a sunny Friday morning on October 3, 2014. It felt like any other day, why shouldn’t it be? I put what I thought was a healthy baby to bed the night before. We woke up just before 8 am and I got Noah out of his crib for his morning feeding. Like every morning, I brought him in to my bed to nurse him. After eating, I went to sit him up and he fell backwards. Puzzled, I tried again, but again he fell backwards. My initial thought was he was full and sleepy but I quickly realized, as I looked him over, he wasn’t moving his legs, feet or toes. Everything from the waist down was torpid. Immediately, we placed a call to our pediatrician who directed us to go to the hospital. The Beverly Hospital emergency department was alerted that we were on our way and they didn’t waste any time examining Noah. Within 15 minutes of our arrival, an ambulance was waiting to take Noah to Boston Children’s Hospital (BCH). To the emergency physician on duty that day, thank you! Thank you for not wasting our time and going with your gut and sending us right to Boston. She knew upon arrival that Noah needed more specialized care and this was a time sensitive medical emergency.  I remember her apologizing to me for not knowing what was wrong with him as we were preparing to depart for BCH. I know in my heart without her impulsive decision to move us as fast as she did, Noah would not be where he is today.

When we arrived at Boston Children’s Hospital, Noah was examined and his blood was drawn. In the thick of the EV-D68 outbreak, the medical community was on high alert and knew they were racing against the clock to make a diagnosis and start treatment. EV-D68, as you may know, can mask itself as many other illnesses. It’s crucial for someone with this virus to receive treatment as fast as possible. A spinal tap was done at bedside and soon Noah was sedated for an MRI. Once these tests were completed, it was time to wait for the results. Waiting, waiting, waiting…waiting to get answers. Waiting to hear what our future holds. Waiting to see if the day we just had would ever make sense. Waiting to hear if this paralysis would be reversible. We waited.

While we were waiting, we cuddled our baby boy. We held him ever so tightly so he felt comforted in our arms and we were comforted by him. As parents we felt helpless. How could we have not protected him from whatever this is? Every decision, moment, event that happened went through my head. What could possibly cause this? How did we end up here? Was it cancer? EV-D68? Guillain-Barre Syndrome (GBS)? Can it be fixed? We just had to wait for answers.

We had made it through the day in survival mode. My aunt, who was a nurse, was with us, being a third set of ears for us and helping us navigate the nightmare that was unfolding before us. The emergency room physician came in to inform us the possible diagnoses were GBS or a type of myelitis radiculitis caused by EV-D68. A nose swab, stool culture and spinal tap would be sent out for testing to see if EV-D68 was present. These two possibilities were overwhelming and terrifying. What do you hope for? Both were life changing and only time would tell as far as a prognosis. We were told the initial treatment for both illnesses had the same protocol and they would start immediately.

After a 10-hour day in the emergency department, we were moved up to the inpatient neurology floor where we were told our stay might last a few months. How did my six-month old baby who was meeting all his milestones early all of a sudden become paralyzed over night? How did we get here?

We got settled into our room that overlooked the city. Outside life was happening and inside our hospital room (it felt like) time stood still. It was as if we weren’t a part of the world that was going on around us anymore. We were in a nightmare and couldn’t get out. Mitch and I could only fix our eyes on our faith – we clung to it with every fiber of our being.

The overnight physician arrived shortly after we got settled into our room. She explained to us the two types of treatment that would be started. Immunoglobulin therapy (IVIg) and intravenous steroids would be given simultaneously throughout the night. Shortly after the first round of IVIg was started we found out Noah was allergic and it had to be discontinued. He spiked high fevers throughout the night and was unable to continue the treatment because the dose he was receiving was already being given at a very slow pace. Unable to tolerate the IVIg and spiking such high temperatures, the physician came back in to inform us they would monitor him closely, but if he got worse or needed more assistance they would be moving him up to the ICU. Every 15 minutes his vitals were taken and we watched his monitors closely. Night turned to day as the sun came up over the city and the world outside kept on moving. In our world, time continued to stand still.

The start of the second day – a new type of IVIg was administered and thankfully there was no allergic reaction. Noah was able to tolerate the new drug and dosage at an average infusion rate. We met with the inpatient attending and resident who took over Noah’s case while we were there. The radiologist who reviewed Noah’s MRI the previous day wanted another MRI to confirm a possible diagnosis. The second MRI concluded Noah had Acute Flaccid Myelitis (AFM), a subtype of transverse myelitis.

Noah would finish the protocol for the IVIg and continue steroids for another few weeks. When the doctors told us of Noah’s diagnosis, they said since Noah’s paralysis was sudden and medical intervention happened within 24 hours of onset, they caught this early. In the midst of a parent’s worst nightmare, these words were anything but comforting. No one could tell us what Noah’s future would look like and if the paralysis would be permanent, but we were to remain hopeful. Only with time would we truly know the aftermath of AFM. We were told the United States was in the thick of the outbreak and it would be months or longer before we knew how other children recovered from AFM.

Overnight our nurse noticed Noah’s mouth started to slightly droop on one side and the next morning they decided they would place a nasogastric tube (NG-Tube) to avoid pulmonary aspiration. During our first few days, it felt like we continued on a downward spiral. Pretty soon though things started to turn around. We started to see gradual improvement. The turnaround seemed pretty quick for an AFM patient. Noah’s mouth, neck and arms regained their mobility and control. As for the waist down, we watched and waited for any signs of movement.

As the week went on, Noah’s upper body continued to regain control. We constantly watched his lower body for any signs of movement. The NG-tube was removed by the end of the week. Since his upper body was improving daily and the NG-tube was out, they decided that he could go home. As for prognosis, no one knew. Everyone hoped with time healing would occur. After initial treatment of IVIg and steroids, the next step was physical therapy. Typically, an AFM patient would be transferred to a rehab facility but because Noah was only 7 months old (Noah turned 7 months old during our stay), everyone felt it was best to discharge him home and proceed with outpatient physical therapy.

After an eight-day hospital stay, it was time to go home. We couldn’t believe it especially since we had prepared ourselves for a long-term stay. We were more nervous bringing him home than the day he was born. Our lives changed overnight and now it was time to adjust to a new normal.

Once home, it was time to focus on Noah’s recovery. We started outpatient physical therapy at a facility near our home within the first week or two. Slowly and ever so slightly we saw movement coming back. A sign of hope!  After being home a little over a month, we were enrolled with the Northeast Arc – Cape Ann early intervention, a program that provides services to children ages three and under with disabilities and developmental delays. We discontinued our outpatient therapy, because in-home therapy would be provided through the new service. Through the Northeast Arc we were assigned a physical therapist, Dr. Jenna Elie (PT, DPT) who also is our case manager. She initially saw Noah once a week, but quickly started coming twice a week and added a developmental specialist for supplemental physical therapy because of the progress and improvement she saw in Noah every week. Three months into our three sessions a week therapy regiment, Noah was accepted into the aqua therapy program, bringing our weekly sessions up to four.

On top of our weekly therapy sessions, Mitch and I were taught how to work with Noah throughout the day to incorporate therapeutic play in Noah’s daily activities. Each week we saw progress. After consulting with a leading physician in AFM who supported and encouraged an intensive physical therapy regiment, Dr. Elie was quick to bring on board an occupational therapist for more supplemental physical therapy. In Noah’s case, our weekly therapy sessions were continuing to make Noah stronger. Hippotherapy and music therapy were also brought on board in early 2016. Dr. Elie said we have to, “Think outside the box in the treatment plan. After all these children are 1 in 2.7 million, they are unique and their therapy services should be as well”. She couldn’t be more right! We collaborated together advocating for many types of therapy services, which have proven in Noah’s case to be just what he needed in his recovery. Noah is now a year and half post onset and walks with a posterior gait trainer! Noah’s recovery team consists of neurologists, urologist, physiatrist, physical therapists, developmental specialist, occupational therapist, hippo therapist, orthotist, orthopedist, pediatrician, and music therapist. We couldn’t be more grateful to our dedicated team and to Dr. Jenna Elie who helps us advocate and coordinate Noah’s care.

Think people should hear about this?

My Personal Road Map – A Letter to My Sister

Dear Sister,

Imagine a road trip from South Florida to New York. If I were to take I-95 and drive straight through with another driver to help with the driving, I could be there in 24 hours. I’ve done this drive several times and I know this from personal experience.

Now having transverse myelitis, I can still make the drive to New York, but instead of taking only 24 hours, it will now could take me 8 –10 weeks, depending on how I physically feel. If I sit in one position too long, I get very, very sore, so I need to stop every 30 minutes, and get out and stretch my legs. Because of the damage in my spinal cord causing mixed pain signals from my legs, I can barely feel the gas and brake pedals so I drive a lot slower and am overly cautious. I can only drive 3 – 4 hours a day, because of the fatigue.  By the time I’ve stopped at a motel and prepared myself for bed, I feel like I’ve just driven 500 miles without stopping. By 3 PM I am totally exhausted and begin looking for a motel, but every one I pass blinks, “No Vacancies”.  Then by pure accident from the corner of my eye, down a lonely side road, I see a small “roach” motel in a tiny town that has a population of 50 people. I am very grateful for this roach motel! It doesn’t matter that the carpeting is dirty as I can’t feel my feet anyway.  But just in case, I’ll give them a good scrubbing before I climb into bed. All I care about is taking care of my personal needs and going to sleep. I also wake up every two hours to catheterize myself because I HATE BEING WET. While on the road, I must stop a lot to use the rest room.  Even with grown up pull ups, pads and being able to self-catheterize, I still need to stop every hour. Once I stop, everything I do is done in very “S——-L——-O——-W” motion. For the record, everything I do since I came down with transverse myelitis is done in very “S——-L——-O——-W” motion.

I also no longer am able to drive on I-95. The entire trip from South Florida to New York must be driven on back roads and I can only drive between the hours of 11 AM and 3 PM. Because of the extreme fatigue, there will be times I need to pull over into a rest area and take a quick cat nap so I can continue on my drive. If it’s raining, or bad weather is expected, I will remain at the motel because I can’t take a chance slipping and falling while walking to or getting out of the car. I also can only make the drive during the fall season, because I can’t drive on snow. Technically I can drive on snow, but if I slip and fall on the snow in the cold, I might not be able to get back up on my own and freezing to death is not part of my game plan. I must stop to eat lunch and pray that it’s not too long a walk from the handicapped parking spot to the restaurant. I will eventually get to New York; I just can’t do it the way I used to.

I’m still the same person that you have always loved, I just have to do things differently, and don’t worry, transverse myelitis is NOT contagious. Don’t treat me any differently than before, and if I need your help, I’ll ask. I’m not a china doll and I don’t break when I fall. I do stumble, I do fall, but not as much if I walk and do everything a lot slower. Oh and by the way, since I left in the fall to visit with you, you’re now more or less stuck with me until spring after the snow thaws. Thank God you’re my sister, no one else would understand.

With Love,
Carolee

Think people should hear about this?