I started writing about my experience with dystonia as therapy. I was helping myself deal with the intense emotions I was feeling. For many years I felt alone because I didn�t know another person with the strange symptoms I was having. Being a registered nurse, I searched and couldn�t find them in a medical book. So, I would put pen to paper and talk about how I couldn�t control my body�s movements any longer. My family didn�t understand and since the physicians weren�t sure about a diagnosis, I felt like I was out in the middle of a great rough ocean on a raft all by myself. The physicians I saw in 1984 diagnosed �cervical strain� after the auto accidents, then it became �cervical disc disease�, and so on. It wasn�t until 1993, when I actually met another person with cervical dystonia, that I really felt like I wasn�t an alien. All the people with dystonia I have met since have told a similar story. When I listen to them, I can hear their emotional pain. We are connected to each other by those feelings. I hope, as you read this, you can feel that connection and find strength in knowing that you are not alone.
Dystonia is a complex disorder because we all have different types of involuntary movements. It is characterized by muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or positions. Some of us have pain, some have involvement of more than one part of the body, and some have generalized dystonia, which involves the entire body. So far, my dystonia has been limited to my neck. According to MRI�s, I also have degenerative disc disease of three cervical disc and spinal cord compression plus scoliosis and bone spurs (arthritis). All of this is related to the Cervical Dystonia or ST (Spasmodic Torticollis). There are days I have quite a bit of pain but I have learned to enjoy my life and make my dystonia just a pesky inconvenience, most of the time. Otherwise, it becomes overwhelming.
Do you remember the first time you noticed your muscles were fighting against you? Before that, you could count on being able to look in the direction of a noise or another person talking to you. It probably started out slowly; maybe even a family member noticed it first. A nearby wall was a godsend for me to lean against. My hand would go up to my face and try desperately to keep the tremor from jerking so badly. It seemed to happen at the worst possible moments, times when you were anxious or upset. For me, the jerking movements and pain came about after an auto accident. I have talked to many people that said the symptoms started after an accident or some kind of trauma.
Dystonia is a shadow that we carry with us wherever we go. It is up to us whether it is a heavy burden or simply one part of who we are.
Dystonia, My Shadow
Dystonia and I travel together.
Perhaps there�s a reason for this.
Some strongholds to tear down,
Some lessons I have missed.
If I am very quiet and listen,
dystonia�s voice may speak to me.
If I could unlock the language
the answer could be the key
I go inside and look.
It runs and hides from me.
I search to find and destroy, but
what is it and what is me?
Occasionally, I feel lighter,
like a loosening of the grip.
Then LIFE arrives with loaded weight
the spasms clench and rip.
I think that in my body,
locked in some hidden spot,
lies this mysterious answer.
Grab quickly or it will be lost.
written on November 12, 1999
My love for writing started...
When I was a little girl, around eight years old, my parents gave me a diary. I would fill the pages with secrets, adventures with girlfriends, my first kiss and the boyfriends I would love forever. Then I continued to journal about my wedding, my career in nursing, and both of my pregnancies. While I was at a pain clinic, I was encouraged to keep a pain diary. Since then, I have been journaling at intervals about my life; including my feelings, treatments, and struggles with dystonia. I look forward to the pages that are empty in my book. I know that there is hope. My journey so far, is one of falling down, brushing myself off, moving forward, sometimes falling again, and so it goes. Each time, I learn something new and as I pick myself up, I have more resilience, more strength, and less fear.
My cervical dystonia symptoms began...
with an auto accident. Our car was stopped at an intersection waiting for the light to change. All of a sudden there was a loud crash and all of our lives were changed forever. My husband had just picked me up after work so I was in my nursing uniform. As soon as I checked my kids in the back seat, I was out of the car and, �ready� to take care of others. It was a five-car pile-up. At first I didn�t even realize I had been hurt then as I bent down to check a lady�s injured leg, the pain rolled over me like a violent ocean wave. That was the beginning of severe neck pain, my left shoulder being raised, and the feeling of no control over the movement of my head.
I already had a mild essential tremor (a involuntary shaking of my head) from about the age of fifteen. Now it was very noticeable and painful. I was taken to the emergency room after the accident and the diagnosis was cervical strain (whiplash) The doctor also noted �torticollis� or �wry neck�. I was told this would be temporary. We found out later, the man who hit us had a .25 alcohol level. One of the cops called him �knee walking drunk�. He had just pulled away from a bar and, not even realizing that we were at a red intersection light, he still had his foot on the accelerator pedal, according to police. He didn�t have insurance and had just been released from prison three weeks earlier. He had served seven years of a fifteen-year sentence for manslaughter of his wife with a handgun. Sounds like a script for a soap opera, doesn�t it?
Then, three weeks later, a car running a 4-way stop intersection hit us again. The driver� didn�t see the stop sign�.
I returned to work on a busy, surgical unit about 3 months after the auto accidents. It was assumed by the physicians that the pain would be gone and my head position would be back to normal. I had been through physical therapy, wearing a collar, wearing a TENS unit (to send electrical stimulation�s to the areas of spasms to release endorphins, the body�s own pain killers). I had been prescribed several different medications. I was in pain despite the pills and depressed so my internist recommended psychological treatment. Of course I had noticed that the movements were worse during times of anxiety. I had experienced this with my essential tremor. So many of us have been told that we are just nervous and over stressed. Of course, at this point, we start to believe that we are �doing this to ourselves�. The problem is we try to make it stop by telling ourselves negative things like, �you can stop this if you try harder� or � I am just a nervous person and I can�t seem to change�. These negative words are the worst messages we could be saying to our bodies. It was a vicious cycle, the more I tried to stop my head movement, the more it jerked. The reality was I had NO CONTROL over my muscle movements! I was strongly encouraged to see a psychotherapist. Of course, the therapist didn�t know anything about cervical dystonia/spasmodic torticollis. The word dystonia was never mentioned. I had the impression that most of the people involved in my care believed I was malingering from the cervical strain. No one took my pain seriously; they were just trying to �shut me up� with an endless variety of pills.
I had always been embarrassed about my head tremor and now it was even worse. I would do every thing I could to cover it up, shirts with high collars, standing against the nearest wall to prop my head. I felt the patients would think I was not a capable nurse. After all I couldn�t even control my neck, and they were suppose to trust me to take care of them? I looked like a severely nervous student nurse not a veteran of seventeen years. Over the years I had participated in treating cardiac arrests, delivering babies, dealing with many kinds of problems and emergencies. I remembered how hard I had fought to be a nurse. When I was in nursing school, the professor in charge of the Nursing department had called me in the office to advise me about leaving the program due to my tremor. I was stubborn. I was determined to try to be a capable RN and I proved it by earning the respect of my instructors and the RNs of the hospital units I trained in. I wasn�t going to let this torticollis do me in now. A disease with such a ridiculous name, Spasmodic Torticollis, doesn�t really deserve a lot of respect any way.
While the pain medication and muscle relaxants helped, they made me groggy. I couldn�t take my pills at work so another solution for the pain relief was needed. The recommendation was to go into the hospital for a cervical epidural block. An Anesthesiologist would place tubing in the epidural space of my spine to inject an anti-inflammatory medication for the pain and swelling. It did help for about six to eight weeks. I would have this procedure about three times a year. Each time meant a hospital stay of 3 days and then a week out of work.
My life had been very busy. I was the mother of two school aged children, had a large home and a full-time job. I had been helping with the schools, and felt like a taxi service with the boys involved in different activities. Now, I was simply going through the motions of being a wife, mother, and nurse. My children suffered the most because I couldn�t give them the attention that they deserved.
The years went by and the cycle with the blocks and the pills and the pain continued. By 1987, I had gained about 40 extra pounds. My routine was to come home in the morning after working the night shift at 7:30 am and send the kids off to school. Then I�d clean up around the house, and then take my tranquilizer and pain pill to sleep. The kids came in at about 3:30, I would try to spend some quality time with them but I felt so fatigued. I would then cook dinner, clean up, lay down on the sofa to rest, start getting ready for work, leave at 10pm, then work for 8 hours. I was usually in charge of our surgical unit. Some nights were so wild we didn�t even get a break. Sometimes I would run and hide in the bathroom shaking and crying when there was a crisis on the unit. I would pray that I could handle whatever came along. The more upset I became over a situation with a patient, the worse my head would bob around and the pain would intensify. If there was a crisis and a patient�s life was compromised, I handled the situation until it was over and then missed about a week of work due to spasms and pain. I like to think that most people didn�t realize what a toll these types of situations took on me. I tried to cover the involuntary movements and the pain they caused me.
In 1986, I decided that I needed to get off so much medication.
It didn�t t seem to be helping that much with the pain or the tremor. I had developed a huge tolerance. The longer you take some type of drugs, the more you need to get the same effect. That is the problem with patients with chronic pain. Physicians have to walk a tight rope between helping their patients with their pain by prescribing narcotics and yet keep them from becoming tolerant and psychologically and physiologically addicted. That is so hard to do. As you read on you will find that I eventually headed down that road to addiction. But, at this time, with help from my doctor, I started to taper off my medications. I made some other changes like swimming after work. The exercise helped with losing weight, sleeping and it was a spiritual lift. I stopped worrying so much about the house being clean and gave myself a break. Over that period of time I had a much better self- image and the movements seemed to recede. I was still having a mild tremor and some pain but it was so much better than it had been. I went to the high school band events where my son played saxophone and even went out of state with a busload of other parents to competitions. I wouldn�t have felt like doing this a year ago. I took my oldest son to his first rock concert, Pink Floyd, and loved the loud music and excitement in the air. I was in a remission obviously. I thought that I might even be cured. It turns out that this happens to about 10-20% of cervical dystonia patients. There were some lessons to be learned from this. I was feeling much better about myself. I was exercising and pacing myself more and enjoying life. Later on it was this behavior that helped me cope with dystonia everyday.
In 1987 my father became ill with Lymphoma,
cancer of the lymph system. My parents lived in Florida and I made several trips down there during the next year. For the last month of his life, I was there to help take care of him. He wanted to die at home. I am so glad that I was in better physical condition myself at that time. He and I had some wonderful time together in those last few weeks. He was of the generation where men weren�t so open in talking about themselves and didn�t show emotion easily. That barrier fell down and he helped me with some decisions about my life and he shared his feelings about being at the end of his. It was the closest I had ever been to my parents. However, toward the end Dad needed a lot of care and I was doing a lot of physical work lifting and moving him. He did leave with a smile on his face and Mom and I were with him. From what I had experienced in my nursing career, it was an easy transition from this world to another. I still miss him so much.
When I returned home it was right back to work since I had been gone for a long time. I could feel the strain of what I had been through and the pain was coming back and the tremor was worse. I found myself running back to a neurologist to get medication for the pain and tremor. At home, another situation was about to cause major turmoil in my life.
In 1990, my marriage of 20 years was falling apart.
Of course, this had been happening for some time. It was finally time to do something about it. Our separation was not mutual. My husband was not going to accept it. We went to divorce counseling. I moved out of our home rather than fight constantly. I can honestly say that my dystonia played a part in this. When I was in pain, I wasn�t always easy to get along with. Then there were the side effects of the pills, my being in the hospital and missing work. I had switched from an evening shift (3p-11p) to nights to lower my stress level hoping it would help the dystonia. In doing so, it had a negative effect on our marriage.
Our youngest child, Chris, was 13. He came to live with me at first. For Chris the breaking up of the marriage was devastating. He began to have problems in school. Our oldest, Paul, was 18. He was starting Georgia Tech and moved into the dormitory. His reaction was to dive into his schoolwork and friends. The divorce was final in November of 1991.
After the divorce in 1991, my life changed in so many ways. At this point I met a man, Kurt, who would later become my husband. He became my closest friend and was wonderful with my own 2 boys. He brought along his two sons that were 7 and 10. There were a lot of problems at that time in my life. One of my sons was in drug rehabilitation and feeling very lost and confused. The divorce had affected him very deeply and he was blocking his feelings with drugs. Of course, he was coping the same way that I was. I was using tranquilzers and he was using inhalants (�huffing that can cause instant death by suffocation). Life was quite an emotional roller coaster at that time.
In 1993, a local neurologist, Dr Matthew Gwynn, put an ad in one of the Atlanta papers about starting a group for patients with the diagnosis of torticollis. I cannot tell you what that meant to me, especially at that time of my life. Going to the meeting was hard. I didn�t know how I would feel seeing others with ST, would I look better or worse? I went to the meeting with Kurt by my side. There were only a few of us but we formed a bond beyond words that night. We shared the fact that we were in a battle with our muscles all the time. There were 3 women and 1 man. It was encouraging to know that I wasn�t the only one trying to work and deal with ST also. Being in a support group helped me in so many ways. I was elated to find a doctor that specialized in movement disorders. Dr. Gwynn is such a warm and compassionate person. He was young and enthusiastic. He had a movement disorder himself, a mild Tourette�s Syndrome. I found out there was an organization being run by a dynamic person with Spasmodic Torticollis called NSTA. Dr. Gwynn gave us magazines from the National Spasmodic Torticollis Association (NSTA) and I cried that night as I read the letters from people that felt like me. Our little group began meeting once a month. I found myself elected President by the third meeting.
Kurt and I went to the Raleigh-Durham NSTA symposium that year and I saw about 200 people with Spasmodic Torticollis. It was an overwhelming sense of belonging.
I really wasn�t alone! I was a member of a very special, strong, and loving family.
Botox entered my life and changed it.
Dr Gwynn gave me Botox and it helped the pain and the tremors. I felt so much better physically. I could handle stressful situations at work without the tremors and pain. That part was very positive. Emotionally, I was still having a lot of problems. My ex-husband and I were in so much disagreement about our younger son and other financial matters. I continued to work and even though the Botox was helping the symptoms of dystonia, I was still taking tranquilizers.
For the next couple of years I was very depressed. I just couldn�t seem to get back on my feet, I was tired and the Botox didn�t seem as effective. I took a short- term disability from work, hoping that time off would help. The final blow was that the dystonia began to get worse and an antibody test showed that I was positive, so my body had developed antibodies to the Botox and it would no longer help me. I was completely devastated.
Then, I started mixing my tranquilizers with alcohol. I am a nurse and I knew the dangers of mixing alcohol with narcotics and tranquilizers. I had counseled other people about it many times. Unfortunately, I failed to do what I preached. Mixing the two seemed to help the pain and movements at the time, but soon I had an addiction to deal. I filed for long- term disability and cried with tears of relief when it was granted after 10 days.
I blamed myself for all the terrible decisions I thought I had made for the last few years. I had to learn to forgive myself for this but it took a long time for the guilt to go away. I went through therapy for my addiction. I was fortunate to know two people in NSTA that had been down the same path. I am not going to give them names since anonymity is important in 12 step programs. They have both been very vocal about their dependence on drugs and alcohol. Their compassion and helpful suggestions meant so much to me.
It is a hard road to recovery, doing without those medications that are addictive, yet they are the ones that seemed to help my tremors. I discovered later that the medication that seemed to help the tremors so much could also cause more tremors. Eventually I found a compromise that worked, but at this point I was floundering. As the pain and jerking continued to worsen, there were times that I wondered if it was all worth it, whether there could be an easier way out? I just thought that I looked so ugly and disfigured that people would hate me or even pity me, whatever it was, I didn�t want any. I mostly curled up in my warm couch womb and hid away from everybody. I conveniently forgot about the love that God and my family had for me.
There was another thing that I was facing at this time that required lots of my time and caused anxiety. That was dealing with Social Security Disability. My long- term disability with the hospital required that I submit a claim for Social Security disability also. So I filled out the papers about my daily activities that SS A sent me and had my neurologist, Dr Gwynn fill out his part. I thought that my long- term disability went through so easily, that this would be easy. Well, they turned me down. Okay, I filed for reconsideration. I was turned down again. This is not unusual. Dystonia is a rare disorder and doesn�t fit into the SSA classifications for diseases that cause disabilities. So consult with your associations and send every piece of information about dystonia to the SSA. Now I spoke with a lawyer because the next step would be a hearing. I was fortunate because even if they turned me down at the hearing level, I would still get my hospital disability. I did have an attorney to go with me to the hearing. Sitting there in front of a pompous judge knowing that you can�t work any more, is extremely dehumanizing. The last thing on this earth I wanted was to sit at home watching the world go by without me making a contribution. I can tell you first timers that you will be so anxious at that hearing that your movements will be much worse so you will probably make an impression on the judge. I did and after what seemed like an eternity in the courtroom he said, �I can see that you can�t stop twitching so, I am going to grant your disability�. What a relief that was! But it is a hard, long process for someone who is under enough pressure having dystonia.
Through the years of 95 and 96, I became more involved in my own NSTA group in Georgia and the national association. I know that the involvement in helping others with dystonia saved me from drowning in my own self- pity. I enjoyed planning the meetings and talking to new people with ST so much. It was almost like my nursing career without the stress.
In Georgia we had, as our Medical Advisor, Dr Gwynn. We were having meetings every month. One month we would have a speaker meeting. We had a physician, a physical therapist, biofeedback expert, psychologist, pharmacist, and an author of a book about chronic illness. It was a close group and we put out a newsletter bimonthly that was very encouraging and informative. The other meeting was called �Caring and Sharing�. That was lead by Mary James, a compassionate lady with ST who was soft spoken and a joy to be with. She always made sure that the meeting ended on a positive note. I loved those meetings because I could just be one of the members and talk about my feelings also.
I was also very busy on the national front. The NSTA organization needed help. It was in transition, moving their office from Wisconsin to California. I offered to help with the 800-HURTFUL phone line. I would call people, listen to them and then give them information about the movement disorder associations and encouragement. In speaking with them I was learning more about how people with all types of dystonia felt. This offered me a incentive to do even more writing. I heard about their fears, anger, loneliness and desperation and their hunger for encouragement, love and understanding from their families. I often struggled with the emotions these callers left with me and I needed some one to listen to me. My husband has always been my biggest cheerleader and a great listener. But he has had to accept the fact that we live our life together depending on the way I am feeling. Dystonia is a third party in our marriage and a very temperamental child. So, although I was very involved with support work and enjoying it, I was still dealing with my dystonia. I was trying different medications. None of them helped for very long. Then I learned of a study going on for the B strain of botulinum toxin (MyoBloc). It was for people who were resistant to the A strain (Botox, Dysport) like me. I called the Emory University Hospital Neurology Dept. and was enrolled in the study. I was so excited when I received a week of relief after the first dose.
I was on a dose escalation study where the amount of MyoBloc was increased with each series of injections. The second set, 11 weeks later, brought 4 weeks of relief from the tremor and pain. Then the third and largest dose gave me 6 dystonia free weeks. I was in heaven. My Mother and I had plans for a cruise to Bermuda. We went during this time and I felt relaxed and enjoyed every minute. I would get up early and go to the top deck of the ship to watch the sunrise over the beautiful clear blue sea. The whole world was brighter and filled with possibilities for me. It had been so long since I had felt like there was a positive, promising future. I watched the dolphins dance in the water in front of me and felt renewed hope.
Eleven weeks later, I had the same amount of MyoBloc and no reaction. I was worried that the honeymoon was over but still held out hope. I was given the injections 2 more times with no reaction. I was crushed.
I terminated the B study after this. I was always reading and searching the Internet for articles for our newsletter and possibilities for all of us. I had read that sometimes if there is long time in between series of A strain (Botox), that it would be reactive again. So I spoke to Dr Gwynn and he agreed to give me Botox A again. He injected 400 units this time. No reaction. It was another let down. I am aware that there are people whose dystonia is much worse than mine. There are people without insurance to even get treatment for their dystonia. And there are people with illnesses that are painful, disfiguring and fatal. Being a nurse for 17 years, I have seen so much heartache. I often wondered how the human spirit can deal with so much tragedy and still keep on hoping and living. But this is my story, my feelings and experience with dystonia, and at that time I was bitterly disappointed.
The next step was to check into Selective Denervation surgery. I had heard and witnessed so many success stories with this surgery that I called Dr Carlos Arce in Jacksonville, FL. He was considered to be tops in this field by many people. He viewed a video tape of my movements and even though he wasn�t sure he could help the tremors, he might be able to help the pain by severing some nerves. I made plans to go and see him. He could not have been more helpful in explaining the reasons why he could not help me. He felt like I might benefit more from the Deep Brain Stimulation surgery in the future but, I was not a candidate for Selective Denervation. There were too many nerves involved. I can�t say that I wasn�t prepared for this news. I had heard, many times, that Selective Denervation did not help dystonic tremor. I am always grateful for an honest physician and respect Dr Arce very much. I would not hesitate to send other people to him.
Kurt and I went to visit some family that live on the Florida coast. While walking on the beach watching the water, I knew it was time for a change. I thought about how I had given 16 years of my life to dystonia. I needed to accept the dystonia and work with the positives in my life.
Now, what direction do I go in? Because pain was a big issue for me that was the motivating factor in talking with a pain control clinic again. This time I approached a new type of rehabilitation center. These physicians had a multi- disciplined approach to chronic pain treatment. The first procedure that they offered me was a cervical block for the acute pain I was having. This treatment had helped in the past and once more it worked so I went back for 3 injections several weeks apart. Then I spoke with the director of the program. He had spoken with Dr Gwynn and knew my addiction history. I could not believe it when he suggested a narcotic patch that would release small amounts of medication into my system continuously to help with pain control. So between this patch and my other medications, I would begin a program of physical therapy that would help me pace my activities so I could enjoy life more. This has really helped me. By working with this therapist we structured a program for me. It included exercising and stretching. I try to walk for almost an hour four times a week. Sometimes I go to the gym and walk on the treadmill. If the weather is nice I love to be outside. Then there are the days that my neck is pulling and jerking and I can�t walk very far but I try to go at least 20 minutes. It helps with stress.
The entire concept added up to listening to my body and making adjustments so I could have a quality of life.
Although I loved talking to people with dystonia through NSTA, my stress level with the phone calls was overwhelming. I had to make a decision about that. It turned out that the decisions were made for me. NSTA was going through some major changes for the 2nd time in the past 2 years. There was a new Executive Director that was connected to a hospital in California where the 800 Hurtful calls would now be answered by volunteers and staff in the office. At first, I was hurt. It felt like a mother being separated from her child but this was for the best.
There was a growing Dystonia Medical Research Foundation Support Group in Atlanta at Emory University. They were having meetings with speakers from the Emory research team. Since my dystonia had become more pronounced over the last year or so I had not been able to keep up with our meetings.
This was a good time to see if someone else wanted to step up to the plate and take over as leader. There were no takers. It was time to bring some quiet back to my life so I stepped down. I continue to make an occasional call to people with ST for NSTA and also help with E-mail now that the Internet is a big part of support.
Dystonia has both blessed and burdened me. I have met and talked with some of the most courageous people that I have ever known. I have many new friendships that are special because we share this disorder. I loved being a support group leader. I have met so many dedicated physicians and researchers that have made curing dystonia their life�s work. My disability has allowed me to study many different subjects and to pursue
creative writing which I enjoy very much. I have been available for my mother who is now in a retirement home. She was recently hospitalized and I had the opportunity to see how stressful the nursing profession can be these days. I am grateful to be out of it and have great admiration for those who are doing the work. Mom and I are working on an extensive family project to make memory books and enjoying it. She has become a very close friend. Who knew that would ever happen when we spent my teenage years in constant battle? I hope and pray she will recover so we can enjoy some more time together. I am more involved in my church and have a closer relationship to the God of my understanding. All of these things give me strength and the ability to cope with my dystonia until a treatment or surgery can be found.
In 2001, I decided to cut back on the narcotic patch dose and come off. I was concerned about long- term side effects of the narcotics. I have found that the occasional ibuphrofen helps almost as much. I take a muscle relaxant if I need it and Remeron(anti-depressant) which helps my tremor. I really am doing well. I no longer worry about how my movements look to people. It is a relief to accept the dystonia and just live my life. There is so much joy, beauty, wonder, and adventure in the world around me, it would be a shame to waste my days hiding away. And HOPE is around every corner.
The night is long, it is not endless-
there will be a dawn.
The pain is now, but not forever-
there will be a healing.
The path is hard, yet there is hope-
You do not walk alone!