Monika

Monika’s story

The first symptoms of my disease appeared at the end of 2008 and it is the start of my long quest for the right diagnose which turned out to be quite a challenge.

First I visited an orthopaedic hospital where they suspected a neurological condition – spasmodic torticollis. I got a soft cervical collar and the effect was disastrous – the spasms even worsened. Then came a questionable diagnosis of psychogenic cervical dystonia, despite the fact that the EMG scan showed excessive muscle tension. I waited more than a year for a proper diagnosis and the right treatment.

With time I noticed

that when I was talking to people I had to hold my head which uncontrollably turned away. It looked as if I was neglecting the other person. My shoulder was jerking upward and the pain was unbearable. The new symptoms really scared me.

I tried physiotherapy but it not only did not help but even aggravated my condition. The doctor referred me to a hospital where I underwent a whole range of examinations and tests and still nobody knew what was going on.

I was overwhelmed

It got to the point where I could not hold my head straight, I had to use a straw to drink from the glass and I was eating while holding my head with my hands. Due to my condition I was made to leave my job. I got a disability benefit for six months, then for one year more and, subsequently, they denied me the right to the benefit. I went to court and spent two years engaged in a legal battle with the social security fund which firmly defended its decision. The discharge from hospital with a suspected diagnosis of psychogenic dystonia did not help but fortunately the court appointed medical experts were on my side and even suggested rightly that the real cause of my problems may be segmental, not cervical dystonia. When the diagnosis was confirmed, I fell to pieces. It is really hard to accept the fact you have a very rare condition which is incurable. The only comfort was that it wasn’t a fatal disease.

My battle against dystonia goes on

I have changed a neurologist and the new one has a completely different approach to the disease which works much better with me. I am stronger and much more experienced now. Although pain has become an inseparable element of my life, I know now what I can afford to do, especially with the right physical therapy. I try to enjoy my life as much as possible. Despite my condition, together with my husband we continue to pursue our passions which include fishing and travelling.

My family gives me a lot of support in my battle against dystonia. My husband drives me to my doctor appointments and is a great help. My daughter keeps motivating me all the time. My parents are also helpful, although quite a long time had to pass before they learned to understand the disease. I’ve gone through a number of breakdowns and periods of despair, but today I have a positive attitude to life and try to cherish the best moments. My emotions have changed, I have learned to live with dystonia and look at it from a different angle now. I have not surrwndered and I’ve found a reason to live: I help other people.

In Poland, patients still struggle with incompetent treatment, arrogance and insufficient awareness of the disease, even among physicians. There is no proper diagnostics and very little information about dystonia. Over the years, I have experienced a lot. I almost lost my life due to deep vein thrombosis. All that made me feel I have to fight for myself and engage in the dissemination of knowledge about dystonia. I started a blog where I regularly describe how I cope with the disease. At first I did not believe in the success of my blog but now I am really impressed by the number of viewings and comments left by people like myself. I am an active member of a Dystonia Poland support group and I take interest in various medical subjects and conditions.

My passion inspired to me to launch a new site which is quickly growing: a support group for patients with rare neurological diseases.


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Abbey

Hello, My name is Abigail Brown,

though most people call me Abbey, and I was born in 1993. Family photos show me as a cute, chubby little toddler while my parents recall my early talkativeness and love of singing. Up until God allowed a different plan to unfold in my life, I grew and developed as the majority of children do.

However, when I was 3,

I was bitten by a tick during a family  vacation and contracted Rocky Mountain Spotted Fever.  My condition was misdiagnosed resulting in severe brain damage that robbed me of the ability to speak, walk, and use my hands. The doctor told my parents that I would recover within the year but that hope proved false.  After many years of physical and occupational therapy, I relearned how to walk and regained the use of my left hand.  My ability to speak has never returned.

When I was 5 years old,

my parents finally found out that the brain trauma I experienced had led to the development of Dystonia, a condition which causes muscles to tighten and the body to contort in different ways. Currently, there is no cure for Dystonia though I have undergone numerous surgeries and procedures to alleviate some of the more painful and debilitating symptoms.

From early on,

I had to learn to communicate my needs by pointing to pictures first and  have since transitioned to a computerized device that voices words for me. I also began to learn to more about God’s love at church every week. But one day I realized that just growing up going to church and having Christian parents didn’t make me a Christian. At the age of 7, I came to the realization that I needed Jesus in my life to become my Savior and to cleanse me from all my sins. That day at a kids’ Bible study, I prayed in my heart and asked Jesus to forgive me of my sins and thanked Him for dying for me and being raised from the dead so one day I could live with Him in Heaven.

Since that day,

I have had the Joy of the Lord in my heart. I have good and bad days, but I have learned that with God nothing is impossible. I was able to graduate from high school. After that I began writing a blog called “Abiding With Joy In Christ” sharing my story with others who might be going through a difficult circumstance.  I also started a business called Silent Inspirations, to sell my paintings and note cards that feature my paintings to earn income.

Yes, Dystonia is hard to live with day in and day out.

This past year I had the Deep Brain Stimulation surgery done in June, it has been a roller coaster ride. I have seen some improvement but then the next day I’m tight once again. How can I smile when things are hard? Because the Bible says in 2 Corinthians 4:17, “ for our (my) light affliction which is but for a moment, worketh for us (me) a far more exceeding and eternal weight of glory,” meaning life won’t always be like this. The Lord has been so faithful in the past 21 years going through Dystonia. I wish I could say I don’t doubt His plan for my life. But there have been times when I don’t quite understand why I’m so tight and unable to do anything. But then I remember that the Lord loves me for who I am and I am precious in His sight. Psalm 139:14 says, I will praise thee, for I am fearfully and wonderfully made. Life may be hard but with God all things are possible.


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Linda

Linda’s Story

On November 13, 2015 I celebrated 20 years of living with Cervical Dystonia. Yes, I said ‘celebrate’.

Since then I have had a full range of emotions associated with my CD. Along this everlasting journey I have always been mindful as to what the Universe is asking my Soul to remember about who I seek to become.

Long before I developed CD, I recall feeling as though my body and soul were separate – meaning that I did not feel as though ‘I lived in my body”. I was aware of my daily functioning (breathing, eating, etc.) however my purpose for ‘being’ was wrapped up in the daily grind of what I thought I wanted out of life (career, family, etc.). I walked around feeling invisible physically, hoping no one would see me, or just notice me when I chose to be emotionally or mentally present. It was as if I was blindly moving through the motion of life with no connection to a physical or spiritual reality.

I was in limbo between the Light of God releasing me from His spirit to physical incarnation that would offer me the majesty of his greatness. It is only through physical being that the Soul is able to fully manifest our desires and intentions.

On that November day

I crashed my car into other vehicles that were coming at me as they were confusingly turned about on a wet paved road in a construction zone. As I was approaching the speed limit there was nowhere for me to move to get out of harm’s way. I felt as though my car was moving in slow motion as I slammed on the brakes, just then an angelic vision of my father appeared and all I could hear was his voice saying “daughter, your life will never be the same”. I walked away from the scene unharmed, yet still dazed by my father’s image.

Within days of that accident my head began to turn to the right violently and uncontrollably. My neck muscles were in severe spasm, it felt as though I had a bag of puppies jumping around in a thousand directions. I felt possessed as if some outer force gained entry into my being coercing my body to twist and turn and move in ways that were not humanly comfortable.

As the months progressed I found that the twisting of my head and neck made it impossible for me to trust eating solid food in fear of swallowing difficulties. I often had to lie on the floor to eat because it was the only way I could attempt to get my neck and body straight. With the pulling it was challenging to balance myself, walking into walls and falling off of sidewalk became the norm – I felt like a drunken sailor, only now the spirit consumed was my own.

Dressing myself, showering, even brushing my teeth was a struggle when I couldn’t hold my head still long enough to make the right mechanical movement to do these simple tasks. My neck and shoulders muscles were at war with each other, the constant moving and twisting of my upper body was endless and painful. I would twist myself right out of a chair while sitting – maybe not much a problem unless that seat was the toilet.

I soon thought of myself as physically hideous, I began to isolate and withdraw due to the shame and embarrassment of the involuntary movement.

I now wanted out of my body!!

It was on that day, November 13, 1995 I was offered a gift from God to reconnect – to connect my spirit with my body and to fully incarnate into Being – I was being offered the ‘gift’ of learning to become Whole.

This leads me to the 20 things that I am most thankful:
  1. CD has taught me the ‘art of mindfulness’ in a chaotic world.
  2. CD has shown that by bringing my awareness to my breath and focusing on the Now it has helped to ease my emotions allowing me to relax my body and neck muscles.
  3. CD has encouraged me to focus on my health by eating a proper diet, exercising to relax my body/neck muscles and resting when necessary.
  4. Although attending to my health is a time-consuming process, I am thankful as I look and feel decades younger.
  5. I realize that I do not have to be superwoman, eliminating the anxiety and an unrealistic sense of self-worth.
  6. I have learned who my true friends are – I love them even more when they say “I don’t see your dystonia” even though I may be a twisted mess.
  7. I am thankful for my new friends with CD who live all over the globe – they truly ‘get’ what I am going through.
  8. CD has shown me and taught me the art of compassion which led to my 1st
  9. CD has taught me how to utilize my time more wisely. I remember the early days of dystonia when I had to choose between going to the store to buy groceries or preparing a meal as my body did not have the stamina to endure two simple tasks in one day.
  10. I am thankful when I am able to sit still and ‘be still’ if only for a moment.
  11. I am thankful I feel that I do not have to conform to society or what the media is projecting to feel good about myself. I am able to create my own values and beliefs. All I want from life is stillness.
  12. I am grateful that CD has led to a career path of helping others.
  13. CD has shown me how not to get hung up on the small issues of life and to focus on the larger picture.
  14. CD has led me to a deeper understanding of my spirituality and purpose for Being.
  15. CD has given me a greater appreciation for nature by being able to sit back and truly reflect upon how we are all part of Nature and all part of God’s plan.
  16. CD has shown me how truly strong I am emotionally. If I am able to endure the physical harshness of a movement disorder and still want to continue to be a vibrant, full of life individual, I know I can survive anything that ‘life’ throws my way.
  17. As a single person, I am thankful that I have learned to be resourceful to financially support myself when working a 9-5 job isn’t always possible.
  18. I have learned that true healing comes from within and that it is my responsibility to heal and nourish my own body. Doctors may aid in my recovery, however true healing is a result of taking responsibility for my own being, guiding my emotions and taking a pro-active approach to recovery by doing the research and the necessary work needed to fully heal.
  19. Having CD has allowed me to access my deeper feelings which has made me a better writer and communicator.
  20. I am thankful that CD has shown me that by living in ‘this’ moment is where I am able to express all of my love for self and the beauty of life that surrounds me. I just have to open my heart and trust God that ALL of life’s circumstances serves as a ‘gift’.

Life blesses my every day when I open my heart to the endless stream of love pouring in from the Heavens.

Please reach out to me by email at LMFuriate@gmail.com to further discuss.


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Nancy

Nancy Hallo Story

“Life is not easy for any of us. But what of that? We must have perseverance and above all confidence in ourselves. We must believe that we are gifted for something and that this thing must be attained.” Marie Curie

Retirement:

the definitions of which are as numerous as the lucky individuals who attain this well-earned status in their lifetime. Goals of retiring are also various and often include travel, spending more time with family and friends.
My husband’s dream for retirement was to reside in a waterfront community, embracing the expected perks of fishing, boating and cooling gulf breezes; a dream that we have been blessed to realize, though a few years before I was eligible to collect my earned monetary benefits. As I somewhat patiently counted down the years, then months, then days until I could apply for and receive a monthly check from Social Security, my dream continued to be the pursuit of my writing.

When I began suffering gradual neck spasms and the sensation of heaviness and extreme range of motion deficit nearly five years ago, I sought medical attention. Multiple specialists were consulted, numerous tests performed, and several therapeutic and pharmaceutical remedies recommended, prescribed and employed; with no definitive diagnosis or etiology nor relief of my symptoms.

Upon visiting with a neuroscience specialist in June 2015, her physician assistant recognized my ongoing syndrome as that of torticollis.

Cervical dystonia,

also called spasmodic torticollis, is a painful condition in which your neck muscles contract involuntarily, causing your head to twist or turn to one side. Cervical dystonia can also cause your head to uncontrollably tilt forward or backward.

A rare disorder that can occur at any age, cervical dystonia most often occurs in middle-aged people, women more than men. Symptoms generally begin gradually and then reach a point where they don’t get substantially worse.

There is no cure for cervical dystonia. There also is no known exact cause, though I remain quite certain that my years of employment as a transcriptionist absolutely aggravated my condition. That my chronic and worsening muscle pain, pulling and deteriorating range of movement negatively affected my quality of life became more evident. The stress of maintaining the position working at my desk top computer exacerbated my neck pain. As I looked toward my eventual retirement, my hope was that separating myself from the posture required during my work day would provide benefit.

In the spring of this year,

retirement benefits commenced. Unfortunately, my dystonia symptoms progressed, even after therapies to include quarterly botulinum toxin injections, muscle relaxants, pain medications, cervical injections, acupuncture, strengthening exercises, as well as physical therapy. With the freedom, time and desire now at hand to pursue my lifelong dream of being a writer, I found myself less than motivated as I allowed my disorder to define me. The discomfort of constant neck spasms, coupled with the inability to bear the weight of nor hold my head up distracted efforts at achieving my lifelong goal. Mild depression led to reconciling that perhaps dystonia would destroy my dream.

With much encouragement, direction and support from my dear friend of 50 years, the author of A Novel Creation, I was eager and thrilled to pen a personal blog describing my newly achieved retired status and its significance in regards to my writing goals. Being employed as a regular contributor for an on-line home health care aide publication, I continued to hone my research and writing skills. I eventually became aware that celebrating the accomplishment of my written creations far outweighs the pain and discomfort I have realized for so long.

Remaining determined to achieve my goal

of succeeding as a published writer, and with the persistence of an idea and initial research underway for a young adults’ nonfiction story, I know the most optimal treatment for my diagnosed disorder is to accept and persevere, learning to utilize my gifts to strengthen and motivate. Perhaps it is this current mindset that is allowing for a mild improvement with my second try at a course of physical therapy.

My prayers, of course, continue to be for a cure in the very near future. But, I have waited a lifetime to achieve success in the pursuit of my passion. Refusing to allow this physical obstacle to be a disincentive is my new mantra!

“I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I’ve bought a big bat. I’m all ready you see.
Now my troubles are going to have troubles with me!”
~Dr. Seuss

Bio:

Nancy Hallo, a wife, a daughter, and grandmother recently added the labels “retiree” and “writer”. After 20 plus years employed as a medical and legal transcriptionist and editor, she begins her writing career maintaining a blog highlighting her “salt life” retirement as well as continuing as a regular contributor for an on-line home health aide publication.


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Tom

Tom Seaman’s story

In the summer of 2001, my neck muscles began to involuntarily contract, causing my head to pull to the right. I had no idea what was wrong. My doctors were also baffled. No one knew how to help so my symptoms kept getting worse. I searched the internet like crazy and finally discovered dystonia, a neurological movement disorder. A neurologist specializing in movement disorders made the official diagnosis. It was a relief to know what was wrong, but scary to think of what lied ahead.

By the time I was diagnosed,

I was in extreme pain and disfigurement, and pretty much unable to do anything on my own. My head and neck were locked towards my right shoulder and the muscle contractions significantly worsened with any type of movement. I had to drop out of graduate school, quit my job, and move in with my parents because I had become disabled to the point that I could not function without their help. I felt immense shame.

I tried a variety of treatments,

none of which were of much help. I fell into a pit of depression, became very isolated, experienced severe anxiety and panic attacks, drank alcohol to help reduce the pain and muscle contractions, and had an awful diet. Within 5 years of my diagnosis, I gained around 150 pounds due to my unhealthy, sedentary lifestyle. At well over 300 pounds, I didn’t recognize myself. Life was anything but fun! In December 2006, I caught a stomach virus and was sick for almost 2 weeks. During that time, my dystonia symptoms subsided a little and I lost about 15 pounds. While getting sick was not the type of motivation to change I would have chosen, it was exactly what I needed. It was a wide open window of opportunity and I jumped through it. I knew if I didn’t, I would eventually have more serious health problems.

I changed my diet and began exercising

(for weight loss and to help manage my dystonia symptoms). I changed what I ate and when I ate, I cut back on the amount of food I ate, and I walked everyday. I started out by walking to the end of my driveway, gradually increasing to 2-3 miles twice a day. By October 2007, I lost all the weight! In less than a year I was back to a healthy 185 pounds for my 6’ 2” frame. I also found some effective ways to better manage my dystonia. People often said to me that I must have a much better attitude after losing all the weight. My response was, “getting a better attitude is what motivated me to lose the weight.” My attitude was certainly better and I absolutely felt better about myself, but had my attitude not changed prior, I never would have been so determined to take the necessary steps to lose the weight and better manage my dystonia symptoms. I still have problems with my neck and back from dystonia that prevent me from doing certain activities, but life is so much better! I have maintained my weight and my dystonia symptoms are night and day compared to the horror I once lived. I used to essentially live on the floor, writhing in pain, feeling completely worthless and depressed, unemployed, morbidly obese, and totally dependent on the help of others. I didn’t want to wake up in the morning because I didn’t want to face the constant physical and mental pain.

Now I am at a healthy weight and in much better control of my dystonia

to where I can live a more normal life with passion and excitement. My journey with dystonia and weight issues led me back to school in 2010 where I became a certified professional life coach so I could help others with their health challenges. Then in 2015, I published a book called, Diagnosis Dystonia: Navigating the Journey. I wrote this book to give others hope and inspiration, as well as guidance for how to better cope with a life altering chronic condition. I have been faced with major challenges throughout my adult life. What helps me jump over hurdles is my belief that everything has a solution.

There is nothing that can’t be altered to improve our quality of life. Obstacles provide us with opportunities to grow and become better people, and every day I am grateful for the chance to help myself and others achieve their personal best.


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