Tamara

Tamara’s story

It all started in February of 2006. My first symptoms appeared when I was very tired. I remember that I went to get something to drink. When I returned and lay down to rest I felt a muscle contraction in my face, as if one tip of my mouth was drooping. I thought it was due to stress and that it would pass away. But it didn’t. I remember that I showed the signs to my mom. I don’t know why but she immediately knew it had to be a neurological disorder.

So I started visiting neurologists

who made different diagnoses. Now I realize that in my case dystonia was recognised quite early. It was diagnosed after 2 months from the occurrence of the initial symptoms. At the time I learned to flex other muscles in a way which stopped the contractions and I still can do it. I should be grateful to my neurologist Doctor Budrewicz who identified the disease so quickly. He prescribed botulinum toxin to me but I hesitated to take it for the next two months. In the meantime I also consulted a psychiatrist but it did not help. When I finally agreed to take the toxin I did not experience any improvement. After the second dose, in addition to contractions in my face, my neck began to twist. I received a higher dose of botulinum toxin through EMG guided injections but they did not work either. The first effects came only after the administration of two vials. Unfortunately, due to limited financial resources, the clinic could not offer botulinum injections at the required frequency. Today, I  still don’t know whether it was good or bad for me and whether my condition aggravated because of that.

After 8 years of the disease onset,

my dystonia progressed considerably.  I had strong symptoms in the neck, shoulder jerking and contractions of facial muscles. I was not able to continue working and I had to go on a medical leave. Toxin injections were less and less effective. Each injection worked only for a month I  felt I could not cope anymore. My doctor was helpless. Administration of botulin had become a real challenge for the medical staff. Three people had to hold my head back to make the injection and I was not able to move my head in any direction, even one millimetre. Walking has become very difficult. I had a two-year therapy with a psychologist and two years of trigger points therapy followed by craniosacral therapy. But none of that relieved my pain. In the meantime I developed epilepsy. Another big problem was that I did have proper support from my family which is crucial in the case of dystonia. I know that they were ashamed of me a lot. I think that only now, after 11 years, they are beginning to understand my disease better. Finally I decided that I had no other choice.

I tried everything

and the only option left was  deep brain stimulation (DBS).  In the past, I did not even want to consider this procedure. and treated it as the very last resort. But with time I realised that I cannot give up and. I needed help because I could not  live like that any longer! I visited a neurosurgeon. Doctor Tabakow did not give me too much time to think and proceeded quickly. After two months from my first visit concerning DBS I was in the operation theatre. My determination was stronger than the fear of the invasive procedure. My surgery was very long as it lasted 8 hours and I had only regional anaesthesia. Maybe it was so long because I was the first dystonia patient in my town. Earlier the procedure was made only to treat patients with Parkinson disease and tremor.

Everything went well

In order to carry out the surgery and make the necessary examinations doctors had to administer botulinum in advance to me. Without it, the procedure could not be performed under local anaesthesia due to the severity of my dystonia. DBS has changed my life. I came back to work and learned to part of the society again. At last I did not need the toxin and my muscles were not paralysed. Unfortunately, it recently turned out that my dystonia developed further and I started experiencing muscle contractions in one foot but the symptoms have been successfully managed through stimulation. My doctors are very happy and somewhat surprised – I think – with the results. They were also concerned initially whether the stimulation would not aggravate my epilepsy but so far everything has been fine.

I would like to tell other patients to look for all possible therapeutic options, even the invasive. And don’t be afraid of DBS. You will survive the surgery and the wounds will heal quite quickly. The important thing is to strictly follow doctors’ recommendations. And the hair regrows  in no time too.  When I was making up my mind I received help from the dystonia patients’ support group in Poland. Now I am offering support to people who are considering DBS and have to make the difficult decision, by sharing my personal experience.

Best regards, Tamara

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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Emilia

Emilia’s story

It all started eighteen years ago when I was 17. I’m 35 years old now. It was very hard at the beginning. I couldn’t sleep because of the uncontrolled movements, my neck and my shoulder were twisted. Going to school was not easy so I often missed classes. My friends were having fun and partied a lot like most teenagers and my life was all about dystonia. I went from hospital to hospital. I was totally helpless and did not understand what was happening to me. I received lots of different drugs by they didn’t help much. My mum arranged individual classes at home for me.

I think that I didn’t go mad at the time only because I always had a strong personality and I tried to confront my condition. I met with friends, went out and people visited me. I remember when my friend’s father once said that he couldn’t help wondering why such mishaps occurred to good people like me while so many bad people around were doing well and feeling fine. Even my teachers were surprised that I was so joyful.

Despite suffering a lot, I tried to live a normal life.

Then came a time when I started feeling better. I’m not sure whether it was the effect of acupuncture, well-chosen medications or maybe my inner cheerfulness. I passed my GCSEs and went to the prom which I enjoyed a lot. I took entrance exams to a college to study education but I failed. I wanted to try once again the following year but in the meantime my condition aggravated. I was hospitalised  and received botox – not much, just half a vial. All the time I was on neurotop tablets.

And my condition improved once again. I began to live a life similar to that of my friends. I went to parties and enjoyed life. I would go out even when I was twisted because when I danced my symptoms improved. I didn’t realise at the time that it was my best cure, the way to relax my muscles.

My parents suggested that I should start an extramural programme at the University of Technology. They were afraid that I would move to Toruń which would cost them more. So I began to study at the University of Technology and I was really scared at first because in high school I didn’t do well at sciences. But after the first semester I was really surprised to find that I was not bad at all.

All the time when I was studying to become an engineer I was fine and in the meantime I even took an extra course. So in the morning I did the course and in the evening I had classes at the university. When I graduated, I began a 6-month internship program. I also had a couple of relationships but none worked for a longer time. Men would break up with me when they learned I had a neurological disorder. So I came to a conclusion that I should rather treat men as friends and stop looking for a partner for the rest of my life. I spent the last year at the university focusing on intense study and defending my thesis. But I did not manage to do it as my condition got worse again.

At that very difficult time in my life I met my current husband.

At the beginning I thought we would only be friends. When he kissed me goodbye after one of our long walks, it crossed my mind that it might be something more. I was hospitalised again and the doctors gave me botox but there was no noticeable improvement. My mum arranged for me a special medical examination before a health insurance panel and they awarded a health benefit to me for a period of one year. After a year I wasn’t feeling well at all, but the health insurance doctors decided I was ready to start work. I could have appealed against their decision but I thought ‘Let them choke on the benefit!’ and I returned to what I did not finish in the past and defended my degree thesis.

I began to work but my condition was not too good, It was not easy to sit at a desk for 8 or sometimes even 12 hours when I was all twisted, but I managed. In the meantime I started learning Norwegian and doing  extramural master’s degree studies. I had a lot of duties but it made me feel better. After a while I had to give up on Norwegian classes because I would catch a cold too often, but I continued to work and study in parallel. I completed the second semester and then something took me by surprise.

Something that was growing in my belly.

I was just scheduled to receive another course of botox but I didn’t do it because I wasn’t sure what impact it would have on the baby. Even my doctor was uncertain. At the time, I took neither botox nor any medications and it was a real horror. Until the sixth month of my pregnancy I worked and studied but I did not manage to defend my master’s thesis. Pregnancy was an extra burden for my body. I was planning a natural childbirth but it ended up with a C-section because my beloved baby had breathing difficulties. When my baby was born I also did not take botox because I wasn’t sure whether it would not get into the breast milk. And I don’t know what happened then, whether my love for my child cured me or something else but since then my condition has begun to improve. I do not take any medications or botox at the moment, only some thyroid drugs.

There are days when my muscles contract and when I have a back pain but I’m fighting back. My sister told me once that she admired me because she would not be able to cope with all of it. But it might not be true. Before something ruins your life, you don’t need to find the strength to fight for a better tomorrow.

I also found a hobby,

pole dance – which makes me feel great and I started learning to swim. Both dancing and swimming help me relax my body.

I have all my life before me so I will certainly take up new hobbies in the future not to get bored. I try to stretch my body every morning, eat a healthy diet and cherish every moment of my life. I will never give up because I have somebody to live for. Even if my body hurts I try not to think about it because he is my whole life, I live for him. Optimism and openness in relations with other people helps a lot. The disease taught me  modesty. There are days when I am really mean for my husband, but I love him a lot too. It is sometimes difficult because he not always understands me and doesn’t feel what I feel. I don’t think I am a special person. Everyone is special and everyone should fight for their life because otherwise you can go out of your mind. First love yourself and then you can make other people happy :):):)

P.S. Lots of love, hugs and kisses. Cheer up! What’s on your mind matters a lot so think positively and live here and now. Leave your past behind and focus on the presence. And if the presence is not good, face it and fight back. Do not let other people judge you and your life because no one has a right to do it.

 

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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