I am Bill Seery and I have a story to tell

On July 15th, 2011, I became paralyzed from above my chest area (that is the T4 area of the spinal column) down to my feet. Within minutes I went from being a happy and healthy person to a paraplegic that was in danger of having my breathing stop at any moment although there was never any shortness of breath or loss of consciousness. Just prior to the “event”, I was driving to pick up a takeout dinner and felt a sudden sharpness on my left shoulder blade. Gradually, my legs became light and weak, and my gait became unsteady. I made it to a friend’s house, sat down and found that I no longer had any sensation or control over my body. I felt nothing. Absolutely nothing.  Nothing worked as it had before. Frankly, I imagined that this was how it would feel if I were buried up to my chest in sand. I realized that I had to get back inside the house so I dropped to my knees and used my arms to drag myself into the living room. 911 was contacted and the paramedics arrived. I will never forget the look on the paramedics’ faces as they poked and prodded me with their assortment of sharp objects – none of which I could feel.

After more than 2 days in intensive care and 10 more days of a battery of blood cultures, tests, MRI’s, MRA’s, CAT scans, x-rays and spinal taps, it was determined that I had acquired a condition that strikes approximately 1 in a million people (mostly young adults) annually and has no known cure. I was diagnosed with what is called Acute Idiopathic Transverse Myelitis (ATM). Using my extensive medical background (ha) I accurately figured out that what I had was bad/severe (acute), that there were no clues how I had acquired it (idiopathic) and that it had crossed (transverse) the spinal cord Terms such as MS and GuillainBarré syndrome were floated around. All I knew was that my body had begun a slow transformation from being paralyzed to having unbelievable excruciating levels of pain and ultra sensitivity throughout my lower extremities.  I soon found out that this really was a neurologic attack upon my body that affected just about everything. I discovered that in many injuries and illnesses that involve the nervous system, such as with a stroke or a brain injury, the damaged area can repair, albeit in a much slower way than a broken bone or soft tissue injury. Even though I was diagnosed with a condition that had no known cause or cure, I went full steam head to take advantage of what I would call “God’s little loophole”.

TM is not a specific injury or disease, but it is one’s body’s immune system’s attempt to fight off and destroy a toxin or virus that threatens our bodies, as a result damaging the body itself. In my case, no cause was ever officially identified although I had reported to the medical staff that 13 days prior I had a spider bite on my elbow that was very inflamed and very painful and appeared to be infected on the area around my elbow. 12 days later I became paralyzed.

Whatever the initial cause may have been, it had caused inflammation in my spinal cord. In effect, the T4 section of my spine (upper rib cage area) and the L3 area had become damaged. If the damage had occurred one section further up, I would have been unable to breathe on my own. This effectively shut off all neural impulses between my body’s nervous system and my lower extremities, causing me to become a paralytic within minutes.

I remember vividly having had dozens of MRIs, which allowed the doctors to see the damaged area. Not a night has gone by without seeing that mysterious whitish patch and devising ways to defeat it. I took advantage of God’s little loophole and started working out in any nursing home and therapeutic facility that would accept my insurance (5 nursing homes, one physical rehab facility and 4 hospitals) to keep my body strong and healthy. I never missed a day of therapy. I also agreed to have a pump installed near my stomach so that muscle relaxation medication could be more effectively distributed directly into my spine.  The first one malfunctioned and the second caused a serious septic infection that required hospitalization and a month of intravenous antibiotics. All is working well today.

19 months later I have regained most of the feeling in my legs, I have my own apartment and my personal therapist and aides that have been a Godsend.  Although I am in a wheel chair, I continue to regain strength and can now ambulate with leg braces and a walker. I can feel all of my muscles and you will be the first to know of my next big step (pun intended).

Not a moment goes by that I don’t thank God for the gift he has given me. I consider myself lucky and I am working on numerous things of interest; I am the group support representative for the New York metro area for SRNA. I am also working on starting a small business enterprise (Northern Capabilities, LLC) that would design and manufacture products to give more independence for people such as sliding boards, leg lifters and reaching/grabber sticks among other items. I am also working with my legislature to create awareness for Transverse Myelitis Day in New York State, which is June 6th.

I promise to use my experience to educate and help others in a similar situation. I can only hope that, as you read this, you may take the time to allow yourself to appreciate the gifts that are all around you and appreciate the selflessness within others. Deep inside we all have an inherent desire to be altruistic!

Thanks and God Bless.

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“It’s hard to stay mad, when there’s so much beauty in the world. Sometimes I feel like I’m seeing it all at once, and it’s too much, my heart fills up like a balloon that’s about to burst… And then I remember to relax, and stop trying to hold on to it, and then it flows through me like rain and I can’t feel anything but gratitude for every single moment of my stupid little life… You have no idea what I’m talking about, I’m sure. But don’t worry… you will someday.”

Lester Burnham from American Beauty

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.

Vick-Jan-26-13_smallVickie Boersema, Zeeland Michigan, 56 years old. One of the organizers of the Michigan Walk-Run-N-Roll Awareness Campaign

A Gallic Treat?

My husband has a favourite restaurant, which is set in the beautiful hill area of Clent in the rolling green Worcestershire countryside, some ten miles from our home. The building also has some en-suite rooms, which are always in great demand. The cuisine is also excellent; the theme of the restaurant is French. All around, the intimate rooms that make up the ground floor are various interesting Gallic artefacts.

The prices are, as you would expect, a little higher than normal for the area, but it is, nevertheless, a favourite haunt of many people who come from far and near to sample its culinary delights.

I have a problem with the place. Not with the food –they’ve started marking up certain dishes as “GF” (Gluten Free) and these are remarkably tasty, my favourites are the boar sausages on a bed of mustard mash, and the venison– nor with the bar, which is cosy with an intimate atmosphere and is full of strategically placed leather armchairs and settees, which all have arms and are easy to manoeuvre oneself in and out.

No. The difficulty is with the toilets. On the ground floor is the “gents” –right by the back entrance, which is the one used most often and which is near the car park. However, the  “ladies” is on the first floor, and only accessed by means of a rather fetching curved staircase. There are some stools scattered around within the well of the stairs, all of which seem to be occupied by young men who totally ignore me as I grasp the ornate wooden bannister on one side of the steps and, grim-faced, set about climbing the north face of the Eiger. The steps, being mainly on the curve, are narrow at the point where I am f forced to climb, and I am aware that I’m one slip away from falling disaster as I inch my perilous way upwards, step by agonising step.

It’s still fresh in my memory: we were there last night to celebrate my husband’s birthday with most of the family, a merry party. At one point, as I paused to catch my breath, I heard a comforting voice behind me: “It’s ok Ruth, you’ll have a soft landing if you fall” and there, following me, was my daughter-in-law. If this were fiction, some gallant, tall, handsome blue-eyed man would immediately have sprung to my assistance –oh yes, that’s right, my gallant, tall, handsome blue-eyed husband is still in the dining room downstairs, sipping beer and exchanging jokes with his sons.

I struggle up, manage to complete my “toilette” and struggle down again. What’s French for: “Why can’t you convert the gents into a facility for the disabled and make my life easier?”


Ruth
~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Photo Credit: cat-0

Time – Reflections

I’ve been giving a lot of thought recently to time – or rather, our individual concepts of the passing of time.

Before my first TM attack I had a very full working week . I was brought up in a household with both parents in full time employment and my mother, in particular, worked very long hours doing two jobs. She owned her own commercial school, which opened in the evenings and on Saturdays, and during the day she taught at a local school. Later, during recession, when the commercial school closed and reverted back to (our) house, she began working as a full-time-college lecturer. This was the pattern to which I was accustomed, and after college I followed it without any real conscious decision.

My days and evenings were full. I was travelling between different schools, colleges and private houses, as well as taking part in rehearsals for productions of various sorts. As a professional singer and teacher of voice it was a rewarding though often tiring existence.

ATM – After TM – I found myself existing in what I saw as a kind of vacuum. Days, even weeks, had passed quickly in my previous existence, but suddenly there were not only days to fill, but also minutes and even – horror – seconds! They dragged by while I took whole days trying to do what I had previously not even given attention to – so-called basic actions such as brushing my teeth, combing my hair, dragging myself around the house. Even using the computer was no longer a quick task. My typing skills had disappeared with my sense of touch and I now had to literally look at the keyboard to see where the letters were.

I’m six, nearly seven, years down the TM line now, and after another four attacks have found my biggest problem is boredom. My mind is slower, due in part to the medication but also to non-stimulation. Last night I was involved in a conversation about free will with my son-in-law, and though I found it refreshingly challenging, I was exhausted afterwards.

Last week our two seven-year-old twin grandchildren were staying with us. My Grandson is very intelligent and very quick physically; it was hard to keep up with him. For his mercurial nature, a five-minute period without some challenging activity left him with a scowl and “I’m bored” ringing on his lips!

I watched him and smiled.

Ruth~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Photo Credit: zamboni.andrea

Video of MasterChef winner Christine Ha living with NMO

Christine Ha was diagnosed with NMO in 2003. As many other people suffering from rare neuroimmunologic disorders, she was struggling with her condition and often lost hope. However, through her passion for cooking and the help of family and friends she managed to fight for herself and her dreams. Through her perseverance, strength and positive energy she became the first blind contestant on the hit reality TV show, MasterChef.

Christine has recently teamed up with The Jubilee Project to produce a new video about Christine’s experience on MasterChef living with NMO.

[youtube]http://www.youtube.com/watch?v=EF3vv1I_q7w[/youtube]

Don’t forget to pass it along and advocate for all those suffering from rare neuro-immunologic disorders!

Pacing

You would think that after nearly seven years, I would have managed to absorb the fact that I need to “pace” myself every day to make sure that my energy levels don’t get used up in one fell swoop. Somehow, though, the message doesn’t seem to have got through.

Take last week – a case in point. Sunday I had an unexpected pleasure, when my son got in touch to say he was coming to see me and take me out to lunch – it was Mothering Sunday. Sensibly (as I saw it) I phoned my apologies to my friend at church, with whom I was supposed to be singing, so I’d have a nice rest. So what did I do?

It wasn’t resting! I rushed round clearing, tidying and loading the dishwasher (not that my son would notice), then texted him to say that as I wasn’t going to church, why didn’t he come over earlier? Result – a lot longer with my son, but no rest.

Which wouldn’t have been quite so bad – but I’d already arranged to drive over 60 miles to see my parents, because it was Mothering Sunday. So I rang them – to say I would be arriving later than I’d expected, then stayed longer when I did get there, so by the time I got home I was exhausted.

So we come to last week. I’d arranged to meet my daughter at a halfway point, about 34 miles from each of us. Because I was so tired, I was running late – texted her – she was making a special trip so I ended up driving nearly 60 miles to see her. Being so near to where my son and daughter in law live, it seemed to make sense to go the rest of the way to see my grandchildren – so I didn’t start to drive home until much later than I’d intended, a journey, which was now nearer to 70 miles than the original 34.

Halfway home I started feeling really sick, which I’ve discovered means I’m getting really, really tired. I didn’t need to do any of this extra stuff, but I forgot I can’t do it anymore.

Tomorrow – well, I’ve arranged to help out at church, then I’ve got to go shopping…………………..!

Ruth~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Photo Credit: Roberta Pesce

The power of advocacy

My life with TM started one day in October 1989, when my dad had to take my brother and I to go pick up our mother at the mechanic shop. Her car had broken down so the day was already not going well. When I got out of Dad’s truck I fell to the ground. My parents thought nothing of it and instructed me to get up, which I did. Over the next couple of days I was falling a lot and crawling around the house. My parents took me to a couple of different doctors since I was complaining of pain in my legs. It was believed I was simply regressing as a psychological reaction to entering kindergarten. The following day when I couldn’t get out of bed my dad called a nurse hotline and informed them what was going on. An ambulance was sent to the house and I was taken to the hospital. This time someone thought to X-ray my back. There it was – a lesion on my spine. I was admitted to the hospital that day.

At the time my parents were told that I was never going to walk again and that they needed to prepare themselves to have a paraplegic child. My mother, a nurse, asked a simple question, “Her spine isn’t severed, is it?” When the doctor responded, “No,” my parents decided that the prognosis wasn’t necessarily set in stone. That’s how things went for a while. My parents would receive some news about my condition and my mother would challenge that particular doctor with a question or two.

I eventually was able to go home and was set up with physical therapy. At that time I was still in a wheelchair. My dad stayed home to care for me, and my mother helped out with some “tough love”. I had to use my slide board to get in and out of bed. I had to wheel myself around when inside, and I had to exercise my legs… a LOT. My parents cared for me and loved me dearly and they simply wanted me to get better. I then moved on to leg braces and a walker, which meant more exercise!

We moved from Phoenix to Ottumwa, Iowa. When I was enrolling for school, the principal suggested that I be put in a special education class to accommodate my needs. Again, my parents challenged what they were told. My mother informed the school that just because my legs didn’t work didn’t mean there was anything wrong with my mental capacity. I was placed in a “regular” kindergarten.

I had some challengesto overcome and I have since mostly recovered. I still have some issues with gait and some muscle weakness. I have traveled the world, hiked mountains, walked the streets of some beautiful cities and have had more wonderful experiences than I could have ever imagined. The only way I could have lived this life was because I had people to advocate for me. When I was too small and too young to understand, I had adults in my life that cared for me enough to see what others couldn’t and ask the questions others wouldn’t. I hope that now, through my involvement with SRNA, I too can be an advocate for others suffering from rare neuroimmunologic disorders.

KC

~ Kathleen Burns, diagnosed with transverse myelitis at 5 years of age

 

 

Advocacy is defined as “The act of pleading or arguing in favor of something, such as a cause, idea, or policy; active support.” Advocacy for individuals and families suffering from rare disorders is crucial to raise awareness and promote timely clinical care, research and development. We look forward to expanding our network of patients, families and researchers actively working with transverse myelitis and related disorders to shape our knowledge and understanding, and, by extension, our care for the patients and their recoveries. If you would like to share your story and be an inspiration to others to advocate for themselves, please email us at info@wearesrna.org

We Are All Equal in the Snow

It’s snowing again. This time, though, the road outside my house is passable, obviously it’s been gritted at some point. Last time I was stuck in the house for three days, as I couldn’t get out.

If I didn’t have such a wonderful carer, I would have real problems. The snow lays thick on our drive, and if he hadn’t been out clearing it all away, there’s no way I could have got out when I did.

I find myself thinking about the problems that able-bodied people are having in getting out and about: I hear their constant grumbles about how careful they have to be in the snow, and how they can’t get to the shops or work easily. This is how it is for the disabled all the time. We have to think about how we’re going to get around from the moment we wake up in the morning to the time we get into bed at night. If I could somehow point this out, maybe we’d have more understanding from those around us?

Perhaps not. People see what they want and expect to see, and most of them are so wrapped up in their own lives they have little time or energy to think about others. I’m as guilty of that as the next person.

But there is a certain pleasure in watching everyone else having to be careful where they put their feet, and being really scared about falling. Somehow, for now, it seems to make us all more equal.

Ruth~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.

Dog Days by SRNA Board Member Barbara Sattler Featured on the Arizona Daily Star

Dog Days, written by Barbara Sattler, one of SRNA Board Members, has been featured on the Arizona Daily Star!

Dog Days explores relationships between mother- daughter, friends, men and women and dogs and humans. It is a time of crisis for Kristin White. Twenty-five year old Kristin is released from prison after doing time for a crime she did not commit. Kristin is involved with two men. Self-centered Josh who lets her take the rap for his drug deal, and Kelly, a good but judgmental man she meets while still on parole.

Written by a former criminal defense attorney and Superior Court Judge, the book follows Kristin’s journey through the criminal justice system from arrest through sentencing with a focus on her relationship with her lawyer and one of her cell mates.

On parole Kristin struggles to find employment. Sara, a psychic and dog communicator who owns The Dignified Dog -a dog training and day care facility-finally hires her. There she meets Samantha, a smart, sensitive black lab and Theodore, a small brown dog of mixed parentage: they help Kristin understand loyalty and compassion. With the help of Sara, her co-workers and various canines, Kristin starts to grow up and find out what matters in life. Kristin’s growth is tested when Josh is once again responsible for another horrible event in Kristin’s life.

Dog Days is available through Amazon, Kindle and other e-readers. All proceeds from the sale of this book will benefit the Transverse Myelitis Association.

Introduction

Hi! My name is Ruth Wood and in 2006 I was happily sorting out my new life when suddenly everything changed. I’d moved away from Stafford in the UK, where I’d lived for twenty years, to marry my soul mate. We have been friends for years and got married two years earlier.

Because of the move, I gave up my full career life as a singer, performer, singing teacher and coach with my own studio. But I gradually built up a new career, teaching with the Worcester Music Department in schools all over Worcestershire, as well as working at the School of Drama in Birmingham and in a private club. It wasn’t long before I was full time again!

In June of 2006, I was diagnosed with coeliac disease, which is an auto-immune problem resulting in a total intolerance of gluten. I’d been ill all my life, and this explained a lot. Within six weeks I was feeling amazing and beginning to put on weight for the first time!

In September of the same year, I was working in Liverpool on a project involving the drama schools, coaching some girls for a performance of an excerpt from West Side Story. I was enjoying it immensely, but began to feel very tired as well as having trouble with my walking. I tried to ignore it, but when I was in the train travelling home I began to feel that there was something very wrong. The day after I returned home I was due to be working at the music school, but I felt too tired and ill to go in. Little was I to know that I was never going to work there again.

Within a week I had severe pain in my left leg, which was beginning to drag. I went to my GP several times, and she sent me for X-rays, thinking it was probably sciatica. Things went from bad to worse, and my husband persuaded me to try a different GP. Unknown to me at the time, Dr. Cheetham specialised in neurological problems, and when he saw me he immediately reacted. After a thorough examination, he told me he was referring me to the Queen Elizabeth hospital in Birmingham for further tests. I knew he suspected something, but he wouldn’t tell me what it was, preferring to wait for confirmation. Within hours I was on a ward waiting for the first of what would be several tests.

My pain and walking got worse, until I could no longer lift my legs off the bed. I couldn’t work out what was happening to me, and was terrified it was something terminal. When the results came through, and it was explained to me that I had transverse myelitis, I was actually relieved! I wasn’t going to die.

I was seen by an OT, who asked me what help I would need at home. How was I to know? I’d never been disabled before!

I was in the hospital for nearly a month, after which I was sent for physiotherapy at a local hospital. This consisted of very little more than drinking cups of tea and watching other people do various exercises. After six weeks even this finished.

Because the hospitals had “lost” my notes between Birmingham and Worcestershire, we weren’t visited by any health professionals for over six months. During that time I had another attack, and lost the use of both hands for a time. I was determined this wasn’t going to be permanent, so devised my own exercises to help myself.

Over the next five years, I had another three attacks, one in my back, two more in my neck. I had to give up my career, fight to get my breathing back on track, and accept the fact that my voice no longer worked the way it should.

I wrote a book about my first year as a disabled person, I published a book of poetry; I took up new hobbies and received grants to study Neuro Linguistic Programming. I joined a new church and found my “centre”, and through it all my husband stayed firm and staunch.

I’ve gone back to work part time, helping people to realise their dreams and sing to their abilities, which is richly rewarding. I’m singing and reading at my new church, where I have so many new friends. I write for the online TM magazine, take part in the forums on Facebook and do everything I can to raise awareness of this dreadful condition. I keep up to date with medical research, attending as many conferences as I can. I take part in a creative writing group, am part of an MS exercise group and have discovered toning, which I do twice a week. I’m out of the wheelchair and use a walker, though the pain in my legs, hands and arms is still vicious.

I have now been diagnosed with severe osteoarthritis in both hips, so my exercises are absolutely vital.

Every day I’m thankful I’m alive, and every minute I try to live to the full, in spite of this disablement.

I look forward to sharing more stories with all SRNA members, friends and followers from across the pond!

Ruth~ Ruth Wood is a regular contributor for SRNA blog. Based in the UK, Ruth was diagnosed with TM in 2006. She now shares her personal stories with SRNA community.