I went golfing after 3.5 Years

My name is Darlene Caterina, I’m 43 years old. On December 8th four years ago, I was paralyzed by Transverse Myelitis (TM).  When I think back, it all seems like a bad dream. I was a very active, fit, fun, healthy, hyper, sweet-spirited woman, so I ignored the scary symptoms that started a week before I was diagnosed with TM. The tops of my feet and back of my arms ached.  My legs became weak, and I just thought it was because I was on feet all day as a dialysis tech. On that Dec 8th day I woke up with a terrible headache, my PCP prescribed me Motrin 800.  After a few hours the headache began radiating down my chest and back I knew something was wrong.  I drove to the hospital I worked at. I vaguely remember having blood draws, then an EKG, after that I blacked out. I awoke the next morning in the hospital and attempted to get out of bed, every step I took became weaker and my legs were collapsing under me, I managed to drag myself back to the bed and called for a nurse.  Lying there paralyzed from my chest down I knew I had to call a family member and tell them where I was but I was too weak to talk, it was on the 3rd day when I finally was awake enough to call.

The neurologist had no idea what was wrong; he thought maybe viral meningitis even though the multiple tests were inconclusive.  To be on the safe side, I was on a high dose of antibiotics and steroids.  My uncle suggested to me, that I go to a bigger hospital. I was transferred around midnight to the University of Michigan. Within hours my team of doctors told me I had Transverse Myelitis. I was paralyzed from the chest down. My upper half was affected but not as badly, my hands were crippled like I had a stroke.  I had trouble breathing, my vision was blurry, and a side effect from the medication made me lose my hearing.  The plan of action was to continue the steroids and antibiotics; followed by more MRI’s, lumbar punctures, a picc line in my arm, physical therapy, occupational therapy and multiple medications.  When the steroids weren’t working they scheduled me to have 3 treatments of Plasmapheresis.  After every session I would have a terrible migraine. To counteract the migraines they prescribed me a high dose of a caffeine drip, which made my pulse go up to 130,.   I became so ill, that I refused any more drips.  I was scared but there was no time for babying me, they made me learn how to dress, wash, feed, drag and position the lower half of my body. Along with physical issues, I had internal damage to my bladder and bowels. Let’s just say how humbling, embarrassing, and devastating this is to a person, male, female, young or old.

Exactly a month from the date of my symptom onset, I moved my left big toe; through the weeks I could roll my ankles, and pull my legs together.  Along with recovery came pain, I tried to explain the pain as when a leg, arm, foot, falls asleep and the burning, prickling, and electricity feeling you get. I was told over and over “pain is good” – it means nerves are connecting. I was released a month later; however, I could not go home, as home was not up to code for a disabled person. I had to have a wheelchair ramp built. Thankfully a friend from church and his son came and built one.

When I arrived home, the first thing I asked for was to set my golf clubs out in my bedroom.  I had to learn how to live with my new lifeless body, inside and out.  I had family to help, but it was up to me to determine how my future was going to be. I did whatever I could by myself. Every day I had new challenges, new pain (I hated being in my skin), new obstacles, new friends, lost a lot of friends too.  Every day I fought to get better.  I was not going to stay in that wheelchair. Day after day year after year my clubs stared me in the face. On May 19, 2013 as scared as I was, I went out of my comfort zone and I went golfing!  Even though I didn’t golf well, I made sure I looked good doing it!

I am so excited to learn that Michigan is having a SRNA Walk-Run-N-Roll awareness and fundraising event! I want to do all that I can to help RAISE AWARENESS and tell the whole world about this devastating illness.

In life, people are stricken with many illnesses, such as cancer, ALS, or diabetes.  I believe that I was diagnosed with transverse myelitis for a reason – to help raise awareness, educate others, and find that cure!!  I hope you will join us in our campaign.

~ Darlene, 43 years old.  One of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!

Let’s get the word out

I first learned about Transverse Myelitis and its life-altering effects when my dad, Wayne Byerly, contracted the disease ten years ago this August.  My story is really my dad’s story.  His life story is rooted in strength, courage, and the undying hope of possibly a better tomorrow.  This has always been his life theme but has taken on an entirely new dimension, tested to its extreme, through the years of the day-to day facing his opponent in Transverse Myelitis. I recognize the themes of courage, strength, and hope, in many stories of those who struggle daily with the grueling symptoms of that common enemy.

My dad, who was 77 years old at the time, was working in my parents’ yard in southern Missouri in August of 2003 when he felt tingling in his left leg.  He went into the house, lay down on the floor and pulled his knees up to his chest to try and alleviate the tingling.  When he went to get up he found he could not.  He crawled to the telephone to call the neighbor for help since my mother was not home. With strength and tenacity, he crawled to his friend’s car to be taken to the hospital.  That began the process of diagnosis and a three-week stay in the hospital.  Physical therapy, a wheelchair, crutches, and then a cane until he could walk on his own, with very little sensation waist down. Recovery became his full-time focus.

My dad has described his feeling in his legs as a burning sensation.  He has likened it to imagining embers being flicked on his legs.  “My legs are very numb feeling and stiff and the muscles are sore.  The feeling is like if your legs were totally numb from a shot or nerve disruption.”  Basically paralyzed from the waist down, my dad has retrained his brain to be ever watchful where he walks in order to keep his tentative balance.  To look up or away interrupts that connection which can cause him to stumble or worse.

Dad’s transverse myelitis has affected every component of his life, and thus, my mother’s life as well.  There has not been a day in the past ten years of their life with Transverse Myelitis that their vows spoken 57 years ago claiming, “in sickness and in health” have not been lived out. The daily impact of the transverse myelitis for my dad has grown in its severity and impact through the decade with this disease.

“I spend more time than anything else in doing the things I have to do to keep my body as good as I can, so that I don’t become unable to be up and around.”  He added that his regime is most likely only prolonging the unavoidable—being unable to walk.  Tough to think about for a man who regularly walked six miles a day after retiring, and tackled 20 miles on his 70th birthday just so he could say he did.

In the ten years since my dad and mom have struggled with his transverse myelitis, he continues to be humble and thankful.  “I appreciate the doctors and Betty for taking care of me all these years.”

My dad stressed, “I would like for more people to know of the disease and how it disrupts their life so much.  I am one of the more fortunate ones because I can use my arms and my breathing hasn’t been affected.”

I agree with my dad.  We need to get the word out for more people to know of this disease and how it affects people of all ages.

~ Karen Gorter, Michigan, one of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign. Support her efforts to raise funds for the Awareness Campaign here. You can also register or start your own team on the campaign’s main page!

Magic at the First Annual Central Florida Walk in Cocoa!

At 5:30 AM I drive out of my driveway in Valrico, Florida, heading east to Cocoa, Florida and the Transverse Myelitis Association walk led by Tina and Jason Robbins honoring their daughter, Sarah.  I’m enjoying a cup of coffee while driving down I-4 through Orlando.   The Walt Disney Magic Kingdom is on my left, always an exciting and happy place.  At this time of the morning the crowds have not yet begun to clog the Interstate or fill the parking areas, but they will, later in the day.  As I continue through Orlando, it’s about another fifty miles to Cocoa.  The sun is just peaking over the horizon, a beautiful orange color with a few dark clouds, looking somewhat like an eyebrow.  This is the beginning of another beautiful day. My thoughts are with the Robbins family, knowing they have put an enormous amount of effort into this event, wanting to raise money for the Transverse Myelitis Association and dedicate it to a daughter they love and wish to honor.  Having made several attempts in the Tampa area to get a support group together, I know how difficult it is.  I’m saying to myself, “I hope the Robbins will be happy with the attendance at Sarah’s event”.  Being an optimist and a fan of what Walt Disney and the Magic Kingdom have done for our state, I’m hoping there will be ‘Magic” in the day and the Robbins family will not be disappointed.  I’m looking forward to meeting and visiting with other transverse myelitis patients, to compare and exchange thoughts and hopefully successes that might be of some help to all of us.

After getting to Cocoa and locating a McDonald’s restaurant for an Egg McMuffin and another cup of coffee, I proceed to try and find 401 Edgewater Drive and the waterfront park that Tina had described in her e-mail.  That’s easy enough.  My MapQuest directions ask me to go down SR-520 to Edgewater Drive, turn right one block and it will be right there.  Parking is somewhat of a problem when I get there.  There are no spaces.  Finally about a block and half away, there’s a spot in a three (3) hour maximum zone.  Thinking “I will probably be here no more than two hours”, I park, get out my walking cane and begin walking toward the park, not knowing if this is 401 or 601, but I am sure hoping it’s close.  Getting closer to the park, I can see a huge crowd of people all wearing blue tee shirts.  Now I KNOW I’m in the wrong place.  This has to be some local athletic event with all the participants getting assembled.  I’ll go up and ask somebody the location of 401.  Getting closer and starting to walk through a beautiful large stone archway that leads to the park, there’s a sign posted on one side of the arch “Transverse Myelitis Association”.   I’m astounded.  As I approach, I see that the blue tee shirts read “First Annual Central Florida Walk For Transverse Myelitis in Honor Of Sarah Robbins”.  I’m truly shocked, amazed and glad.  Getting still closer, I see tables lined up all along the walk, first a registration table, then a blue tee shirt table, a Krispy Kreme Donut table, coffee, water and all kinds of other fund raising items.  WOW!! There are volunteers and supporters everywhere!  Sarah’s aunts, uncles, cousins, friends, and on and on.  Many are people from the community of Cocoa there to support Sarah. Truly amazing!!  Over and behind one of the tables, is our beautiful smiling Executive Director of The Siegel Rare Neuroimmune Association, Chitra Krishnan.  Having met Chitra several times at some of the Transverse Myelitis Symposiums, she is one of my favorite people.  Chitra has been instrumental for years in helping our association even before she became Executive Director.  When Chitra was with Johns Hopkins she was always a big supporter.  I have heard our President, Sandy Siegel, say many times “If you want to get some information, action or help, call Chitra”.  We are very lucky to now have Chitra running our association and from the large crowd, I knew immediately she had a hand in helping to put together this wonderful event.  During the day we had several conversations and during one conversation, she asked if I would write a blog about the events of the day.  I was honored and gladly accepted.  This was turning into such an action-packed and exciting day; it would be an easy task, and an absolute pleasure to write about it.

After finding the registration table, I went to check to be sure my e-mail registration had gone through.  The registration identified me as a sufferer of transverse myelitis.  So that others attending the walk could recognize those affected by the illness, Tina Robbins had a beautiful flower pinned on each of us who would be identified as “victims” of TM.  This was a brilliant idea, as that allowed us to identify others in the group like ourselves and for the other supporters to be able to identify us as being a sufferer of the illness.  I immediately located Tom Kearney (fellow TM sufferer) and his lovely wife.  We had a great time getting to know each other and exchanging symptoms we each suffered from our battles with TM.  We also were able to share remedies that have been helpful.  During the day we met two other ladies that were sufferers of TM.  While we were all talking and enjoying getting acquainted, in the background, there was a large covered stage where a DJ had set up an audio system, and was playing music that seemed to energize the crowd.  It was pleasing and enjoyable music.

The star of the day and the young lady we were all there to honor and support was brought in, to the delight and applause of everyone attending.  Jason, Sarah’s dad and Tina, her mom, were on the stage making introductions and especially thanking those volunteers and companies that had contributed to make this event possible.  Those companies included, Premier Primary Care, Designer Press Inc., Imperial Cleaners, Huddleston, Robbins and Riddle, PA, Law Offices of Jason Robbins, PA, Sea World, Avion Insurance, Firehouse Graphics, Ryan McDuffie DJ Service, Riverside Landscaping, Tellis, Barr and Shinn Families and last, but not least Creative Magic.  I don’t know who gets credit for all the ‘Magic’, but we can certainly start with Sarah, her brother Zach, and her parents Jason and Tina.  Along the way Creative Magic must have done their part.  The talks by Jason and Tina were pretty emotional and Tina needed, and received, a grand applause from the crowd to get her through her part of the program.  And then Jason announces to everyone where we will line up to begin the walk.  We will be on the sidewalk that circles the park.

But, first, Sarah is going to try and get up from her wheelchair and take a few steps to start and lead the procession.  This is another very, very touching time.  After Sarah maneuvers her wheelchair to the designated spot and locks the wheels, she places her hands on the armrests and strains to rise out of the chair.  This is a real struggle and she needs to sit back down, but not for long.  She is determined.  Again she struggles to rise from the chair.  There must have been two hundred people there thinking just like me.  We are straining in our hearts and minds to help her get up.  There is applause, she continues to struggle and finally she is standing erect out of the chair.  She takes several steps on her own with the encouragement of her physical therapist who is right there to make sure she is safe.  There is tremendous applause from the crowd as she returns to her chair.  Smiling, she rolls ahead and leads the ‘blue shirt’ crowd that is walking behind her in support.  There were two lovely ladies that were relatives and friends of the Robbins that walked along and kept me company and provided great conversation.  They certainly did make my walk pleasant.

Tom Kearney and I had taken ‘squatters rights’ on a shady bench near the registration area, so I took a short cut and returned to that bench.  There were a couple of very nice and attractive ladies that came and sat down.  They wanted to know more about transverse myelitis. They were close friends of the Robbins family and would like to be more knowledgeable about this terrible illness that has affected Sarah.  They knew I had suffered the illness too.  They saw the flower.  It‘s funny how flowers attract ladies.  I know it had to be the flower, it couldn’t have been me, but I definitely enjoyed the visit.

Several times I looked out at the crowd and thought, there are two people that I wish could be here to see and enjoy the success of an event that brings attention to this dreadful condition that affects many people all over the world.  Sandy Siegel would have a ball meeting and talking to the folks that made this event happen.  Dr. Douglas Kerr would be very pleased to see a successful event bringing attention to transverse myelitis, a condition he has spent many years of his life trying to understand and find cures.

After the walk, Sarah’s dad, Jason, brought her out on the lawn area so we could individually meet and greet her and wish her well.  I had prepared a short document I thought she might enjoy.  It was a list of the SEVEN WONDERS OF THE WORLD that most of us adults with TM are familiar with.  They are not the Pyramids or the Grand Canyon, but the wonders of sight, hearing, tasting, touch, feel & reason, laughter and most important to love and be loved.  Wonders we may have heard of many times, and should never forget. When I prepared this and even when I went to greet Sarah, I did not realize she was non-verbal, but her dad told me he would read it to her and she would understand.  Jason told me this condition was prior to transverse myelitis.  When I first met Sarah and told her that I too had suffered an attack of transverse myelitis, she was a little shy and covered her face with her hands, but after a few moments she looked up, smiled and opened up her arms offering a hug.  We had a grand hug and I walked away realizing I had just met an exceptionally special young lady.  Without speaking, she is reaching out and touching many people in a very positive way.  I had a warm and privileged feeling.

Walking back to my ‘squatters rights’ bench, a lot of people came by carrying bunches of blue balloons.  They all assembled on the lawn.  This couldn’t have been choreographed any better.  The balloons were released as music was playing.  I’m pretty sure the song was “The Wind Beneath my Wings”.   There were hundreds of blue balloons that rose up in the sky and drifted over the Indian River that runs beside the park.  Almost magically, a gentle breeze was blowing them northeast and will take them over the Kennedy Space Center, where over the last fifty (50) years a lot of ‘Magic” has occurred, then out over the Atlantic Ocean.  What a stunning sight!!

After reluctantly having to leave, driving back through Orlando with The Magic Kingdom on my right the word ‘MAGIC’ has a special meaning today.  Sarah’s Magic is real.

~ Ron Raulerson

My Life with Transverse Myelitis

I’d like to share just a snapshot of my life before Transverse Myelitis (a disease that affects approximately 1400 people per year in the U.S.) and what it looks like since this disease attacked my body.

Just about a year ago, I was feeling the best I had felt in a number of years.  I had been on a weight loss journey for a couple of years and lost 70 lbs.  I had begun a wonderful exercise routine of walking/jogging 2 miles almost every day. Life was good.

I was working full time as a Human Resource Assistant at a job I felt God created just for me 15 years ago. I felt like my contribution to this company was good, and making a difference.  I worked with great people who became my 2nd family. I was involved in my church, and served as the leader of a healing prayer team that ministered to people each week.  I attended a weekly Women’s Bible study. I felt blessed and loved serving in my area of giftedness. I also enjoyed times of bike riding, hiking and simply being with my two granddaughters, ages 7 and 12.

My husband had started working for a new company a couple years prior, and his job took him out of state, and out of town. He came home weekends, and we enjoyed our weekends together exploring, walking on the beach, eating out, and just spending time with each other and our friends. We live in a nice older home.  I enjoyed decorating the inside, and working in my flower and vegetable garden outside.  I loved bird watching, and just being out in nature. I loved to read and listen to music.

Two years ago, my life was turned upside down by a disease called Transverse Myelitis, something I knew nothing about.  My onset was gradual over a few weeks’ time. These years have been the most difficult years in my life. My body has been taken over by this autoimmune neurological disease, and it has changed my life in significant ways.  It’s been hard!

I now struggle to walk even short distances, and I now park in the handicapped parking spot at the grocery store.  This task zaps my energy for the day. I had to leave a job I loved and a company had been with for 15 years.  I miss my work, and my work family.  Now, it’s work to just get out of bed and take care of my daily grooming needs before noon each day. I struggle to do housework. Gardening and yard work are not possible. I now watch the birds from inside, and my family has taken over the outside tasks I used to love. Heat is my enemy as it causes my symptoms to increase. I now listen to our church services online, because being in large groups of people is difficult and exacerbates my symptoms. I miss attending services with my family, and worshipping with my church family.  It’s been hard being on the receiving end of meals being brought in, and help being given to me.

Any stress, good or bad, causes my symptoms to flair.

I still love the times that I spend with my granddaughters. It’s been so hard to tell them that I’m tired and can’t do the things I used to do with them. They try to understand, and still bring me so much joy.

My day is usually spent sitting with my legs and feet elevated. If my feet are in shoes or hanging down for more than ½ hour, they begin to burn and the feeling of pins and needles is painful. I ice my neck several times a day due to the tightness and muscle spasms I experience.  Small tasks such as making my bed or sweeping the floor will exhaust me for hours. My body is constantly buzzing on the inside. My hands tremor and burn, and I find it difficult to write or type. I only wear loose fitting clothing because anything touching, especially on my left side does not feel good at all. Heaviness, weakness and fatigue are part of my every day experience. It’s hard to describe to someone what fatigue is like, but I say it’s not sleepiness; instead it’s not being able to will yourself to move, no matter how much you want to.  I feel like I am carrying cement blocks on my arms and legs at all times.

I now take many medications to make it through my day. Meds for the internal buzzing, meds for the muscle spasms, meds to restore my energy, meds for depression, meds for anxiety, meds to sleep,  increased meds over the past year for high blood pressure, and meds for the acid reflux due to all the meds I’m taking.

My concentration is not good, and I find it difficult to read and comprehend what I’ve read.

I love music, and used to like it loud.  Now I find only soft music works, or my symptoms will increase.

This disease has taken a toll on me, physically, emotionally and spiritually.

I have been doing physical therapy in my home each day and have been blessed by a wonderful husband, family and friends who encourage, bless, and help me so much!

I continue to believe that I will get more recovery as I persevere, and trust God for His help and healing.

Vickie Boersema, Zeeland Michigan, 56 years old. One of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign. 

Regional Transverse Myelitis Clinical Care Symposium: Focusing on YOU

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The Johns Hopkins Transverse Myelitis Center (JHTMC) is excited to announce the 1st Regional Transverse Myelitis Clinical Care Symposium. Patients, family members, and caregivers impacted by the diagnosis of Transverse Myelitis (TM) and other rare neuroimmune disorders on a day-to-day basis are invited to attend. Medical practitioners who are interested in understanding more about the management of these disorders but are less familiar with its long-term impacts are also welcome!

Faculty and staff from the JHTMC and the International Center for Spinal Cord Injury at the Kennedy Krieger Institute will discuss issues commonly confronted by patients with TM, such as pain, spasticity, weakness, depression, bowel and bladder dysfunction. The latest trends in management of these issues, rehabilitation strategies, and new research developments in TM will be discussed.

Speakers will include:

  • Daniel Becker, MD
  • Michael Levy, MD, PhD
  • Janet Dean, PNP
  • Scott Newsome, DO
  • Adam Kaplin, MD, PhD
  • Kathleen Zackowski, PhD, OTR

 

Date: June 15, 2013, 10:00 am to 2:30 pm

Registration begins at 9:30 am.

 

Venue: Schaffer Auditorium, Main Level of the Bloomberg Children’s Center.

Johns Hopkins Hospital

1800 East Orleans Street, Baltimore, MD 21287

 

RSVP: Send an email to hopkinsTMcenter@jhmi.edu to reserve your space.

While the event is free to all, space is limited!

 

Please note that the Orleans garage is conveniently situated across the street from the hospital between Wolfe & Broadway, and the Bloomberg pedestrian bridge on the 4th floor of the garage links to the Main Level of the hospital for safe and easy access. However, garage parking is not free and validation is not available. Light refreshments will be provided and there is a cafeteria on-site. 

First Podcast with Dr. Benjamin Greenberg and Dr. Allen DeSena

The Siegel Rare Neuroimmune Association is proud to announce our collaboration with Rare Genomics Institute, for an upcoming Podcast Series, Ask the Experts. Rare Genomics Institiute (RGI) is a non-profit organization that gives families afflicted by rare genetic disorders access to genome sequencing and expert analysis. RGI helps patients with orphan diseases initiate and fund personalized research projects through a dedicated crowd-funding platform and a highly selective network of leading academic scientists and commercial institutions across the globe.

Our first Ask the Expert Podcast featuring Dr. Benjamin Greenberg and Dr. Allen DeSena from the University of Texas Southwestern in Dallas, moderated by RGI’s president, Dr. Jimmy Lin will be held on February 7, 2013 at 7 pm EST.

The podcast will begin with a 30-minute discussion of recent developments in technology applicable to rare diseases. We will feature Dr. Cathleen Lutz from The Jackson Laboratory who will discuss how mice are used in scientific research as models for developments in genomics and biotechnology. Specifically, the discussion will help us better understand how scientists develop mouse models and how they can be used to advance research for rare diseases.

This will be followed by a 60-minute discussion focused on the management of symptoms that affect individuals who have been diagnosed with the rare neuro-immunological disorders (Transverse Myelitis, Acute Disseminated Encephalomyelitis, Optic Neuritis and Neuromyelitis Optica) with Drs. Benjamin Greenberg and Allen DeSena. They will be available to answer your questions about treatments, symptom management and any other questions you may have about these rare neuro-immunological diseases.

Please register and submit questions prior to the call. You can also participate live via social media through twitter (submit questions to @raregenomics) or post questions on the status during the call on https://www.facebook.com/raregenomics.

If you are unable to join the live discussion, look for our downloadable version (both text and audio versions) to be available shortly after the podcast on our website.

NMO & TM Research Symposium – Jan 2013

The University of Texas Southwestern Medical Center in Dallas, TX is hosting a Neuromyelitis Optica and Transverse Myelitis Research Symposium on Saturday, January 12, 2013.  The meeting will be held from 10 am – 2 pm at UT Southwestern on North Campus in the T. Boone Pickens Auditorium located at 6001 Forest Park Road, Dallas, TX, 75390.

The goal of this meeting is to share with participants the research being conducted at UT Southwestern to advance the understanding and treatment of these rare neuro-immunologic diseases. Attendees will have the opportunity to listen to and learn about the progress of research currently underway from researchers, physicians, and study coordinators, including understand the expectation of the studies being conducted. During the symposium, details will be shared on a longitudinal study that has been recently initiated at UT Southwestern focused on studying patients diagnosed with Neuromyelitis Optica (NMO), NMO Spectrum Disorder, and Transverse Myelitis.

The conference is free-of-charge and is open to any patients and families interested in gaining a greater understanding of the research being conducted and combating these diseases.

For questions or to RSVP, please contact Morgan McCreary by email @ Morgan.McCreary@UTSouthwestern.edu or phone at 214-645-0561.