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by Tom Seaman, BS, CPC

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Dystonia Education Blog with Tom Seaman

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Posted on July 22, 2016 at 6:10 PM Comments comments (1)

I relocated my blog from this website to Blogger.
It is called Dystonia Living.
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The dystonia diagnosis and prognosis

Posted on June 22, 2016 at 6:50 PM Comments comments (2)

The Dystonia Diagnosis and Prognosis
by Tom Seaman


“You have dystonia” are three words that can be very confusing and frightening. Receiving the news that you have any chronic condition can bring out a lot of emotions. People may react with fear, anxiety, anger, disbelief, a sense of loss and injustice, and depression. Some cry, scream, go numb, become very inquisitive, or feel vindicated that what they have wrong has been acknowledged. I would guess that most people experience a combination of all these things and more.


I can appreciate these reactions because I experienced them all at one time or another. However, it was not when the doctor said, “You have cervical dystonia.” It was in the weeks, months, and years that followed that I rode the emotional roller coaster. I was actually pretty relieved at first because I had already self diagnosed so it was good to get a doctors’ confirmation so I could move in positive directions regarding treatments and lifestyle changes.


If the dystonia diagnosis isn’t enough, even more deflating to hear is, “there is no cure.” This can cause anger, fear, and depression, to name but a few reactions. However, it is important to put this into perspective. How many diseases/disorders that people live with today, and live very well with, have a cure? I don’t have the answer to this, but it is pretty low. Most diseases are managed, not cured, and dystonia is one of them.


Just like people with diabetes, multiple sclerosis, Parkinson’s disease, celiac disease, AIDS, etc., all of which have no cure, people with dystonia can live a fulfilling life with proper treatments and lifestyle changes. Please don’t allow yourself to believe that you won’t have a happy, functional life simply because dystonia has no cure. Many people have transformed their lives by finding successful ways to manage their symptoms.



Accepting the challenge
The dystonia diagnosis is not the definition of your life. It is not the book of your life. It is just one chapter of your life among many other chapters. While it can alter the course of your life from subtle to dramatic ways, it need not be how you define yourself. It is not what happens to us in life that defines us. It is what we do with it that defines us.


Work hard every day to think about your life right now and not the life you once had. This is the way everyone should live, dystonia or not. The past is over. Also, don’t predict where you might be in six months or a year. As with all of life, dystonia is unpredictable so it is best to roll with the punches versus anticipating “what might happen.” Being consumed with worry can prevent you from helping yourself right now. Take each day one at a time.


When I struggle in this area I say the following affirmation: “I relax into the flow of life and life flows through me with ease.” I read this in a book by Louise Hay called, You Can Heal Your Life (1984), which I highly recommend.


Saying how much we hate dystonia won’t make it go away. When we say we hate something, anger, bitterness, and resentment consume us. Instead, find a way to cohabitate with your dystonia because no amount of anger will take it away. Fighting any adverse condition will only increase its power over us.


We have a choice to feel how we want about everything. Mindfulness (non-judgmental acceptance of thoughts and feelings) tells us that there is peace in accepting things the way they are in this moment. This acceptance gives us the space to just be, and with that space, the opportunity to let go.


Focus on things just as they are; not the way you think they should be. The changes that can come out of this acceptance are incredible. As Michael J. Fox said, “Acceptance doesn't mean resignation. It means understanding that something is what it is and there's got to be a way through it."


If you have a racing mind full of questions and concerns, please reach out to the many online forums, support groups in your area, and dystonia organizations to talk to others who can relate. Dystonia can be distressing and exhausting. Share what you are thinking and feeling. Learn about treatment options and coping mechanisms. You need not feel any shame. You have done nothing wrong to be in this situation. Take control and do what is best for you in order to get better.


Tom Seaman is a dystonia awareness advocate and author of the book, Diagnosis Dystonia: Navigating the Journey. He is also a certified professional life coach in the area of health and wellness. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1

 

What does dystonia feel like?

Posted on May 28, 2016 at 7:05 PM Comments comments (5)

What does dystonia feel like?
by Tom Seaman


Unless you live with dystonia, it is very hard to understand how it physically feels, let alone the mental and emotional challenges that come with it. For some people, dystonia permeates every single part of their lives, demanding so much of their attention that it can be the only thing they think about. Their symptoms never stop long enough for them to get a break. The pain for many is excruciating.

 

This chronic lifestyle is very hard to comprehend for a lot of people. It certainly was for me until I developed dystonia over 15 years ago. Prior to dystonia, life was easy. I never had to carefully consider everything I did for fear it would throw my body into more pain and trauma than it already was. I lived freely in a body that worked great, doing whatever I wanted, whenever I wanted; something I took for granted, which I now see so many able-bodied people doing all the time.


When dystonia hit, my perspective on this changed in an instant as I longed for that life I once had and never fully appreciated. Dystonia has challenged me unlike anything ever before. You can see in my photos how dystonia can affect my body. It turned my world upside down and has taken me many years to find my bearings.

 


There are so many people in our lives who don’t understand the devastation dystonia brings, so I hope this video and article provide a new perspective. Perhaps by learning what dystonia feels like, people can be more empathetic and we can enjoy happier, healthier relationships. While this video does not describe all the many different ways dystonia feels, I hope it is a good representation of what the vast majority experiences.


I find that the best way to describe dystonia is to share an example of something similar to what other people have experienced. At my worst, I used to say it felt like someone constantly had a power drill in my skull, neck, shoulders, and back, and a rope tied around my head yanking it towards my right shoulder. Of course I don't know anyone who has experienced this, so it is not relatable and thus, probably not the best explanation. I would get empathy, but it was accompanied by blank stares.


Similarly, I often hear people say it feels like the affected body part(s) is in a vice, they are being squeezed by a snake, their head feels like it is being pulled off or is the weight of a bowling ball, and/or their muscles pull, turn, and twist uncontrollably. While most of us with dystonia understand what all of this is like because we experience it, it makes little sense to someone without dystonia. In order for them to better understand, we must use specific, tangible things they have also experienced so they can relate. Or, be creative and have them do things that mimic what you feel. Please see the video for some ideas.


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As you can see from this video, dystonia is not a fun disorder to live with by any stretch of the imagination. Take one of the examples I give about a charley horse. Imagine what your life would be like if you had a charley horse that never went away. It is almost unfathomable, but this is what dystonia feels like for so many of us. Is it any wonder some of us may not be the same person we were before dystonia entered our lives? Chronic pain can change everything, which has forced us to adopt coping mechanisms that don’t necessarily reflect our real level of discomfort.


When we say we are in pain, it is often worse than usual; much of the time we are just coping and trying to sound happy and look normal. The gal in the picture below is evidence of this. She was in major pain in this picture, but her smile tells a different story. Also take note of how she is holding her head; a gesture that is very familiar to those of us with cervical dystonia.



 

Sometimes we hear others say, “You just need to push yourself more.” It may be hard to read how we feel on our face or in our body language, but we push ourselves all the time; sometimes too much and we pay for it later with worse symptoms. Finding balance is one of our greatest challenges. Some days we do nothing but push just to get through the day. Sometimes it took everything I had in me to merely get out of bed to make breakfast.


This is the reality of dystonia for many people, which can be a difficult concept to grasp. It is even difficult for those of us living with dystonia to sometimes understand. This video and article should provide more clarity. Too many people with dystonia do not get the support they need because those close to them simply do not understand the gravity of the situation, including our doctors. I hope this helps in that regard.

 

Tom Seaman is a dystonia awareness advocate and author of the book, Diagnosis Dystonia: Navigating the Journey. He is also a certified professional life coach in the area of health and wellness. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter @dystoniabook1

 

Be your best health advocate

Posted on April 13, 2016 at 6:30 PM Comments comments (0)

Be your best health advocate


Living well with dystonia and other chronic conditions requires that we be disciplined in taking good care of ourselves. Some people rely solely on their doctors for care. Unfortunately, except for suggestions, doctors can’t do much for us beyond providing treatments. For some this is enough, but for the vast majority, we need to do more for ourselves to be as healthy as possible. Doctors don’t feed us, exercise for us, sleep for us, choose our spiritual practice, select the people we spend time with, etc. We are responsible for practically every aspect of our well being which is done by making healthy lifestyle choices; in other words, practicing “self care.” 


Generally speaking, self care is the ability to deal with all that our health condition entails, including symptoms, treatments, and lifestyle changes. With effective self care we can monitor our condition and make whatever physical, behavioral, and emotional changes necessary to maintain a high quality of life.


Self care for me includes eating well, exercise, quality sleep, stress management, massage, acupuncture, listening to music, resting by the pool or at the beach, meditation, prayer, avoiding toxic people, refraining from activities and events that overtax my body, taking breaks from my computer and phone, walking in the park, reading inspirational books, watching my favorite movies and TV shows, and spending time with people who lift me up.


I like to be active, but at times I also need to rest. For years I felt guilty if I took a break and rested during the day because I felt like I was wasting time and being lazy. Even though my dystonia symptoms required that I rest, I still felt guilt because it is not my nature to be idle. I was not comfortable doing what I perceived as “nothing.” It was not until I changed how I looked at it and realized that doing “nothing” was a form of self treatment and care that is vital to my health. I also realized that I didn’t do enough “nothing” for the vast majority of my life, which kept my mind and body in constant overdrive, creating a chronically stressed and unhealthy state.


When my dystonic body requires exercise, I feed it exercise. When my dystonic body needs rest, I rest. No qualms about it anymore. I make sure to relax in a peaceful setting to calm my body and mind. This might be at a pool, beach, my yard, a park, or somewhere in my home. I call it “purposeful resting” because it serves an important need. In many ways, this is more helpful than some treatments I receive. 


When I realized the benefit of my self care activities and by renaming them to things such as “purposeful resting” and “self treatment”, the guilt went away. I am now more comfortable doing these things because I value how much they improve my life.


With the guilt gone, my self treatments are more effective in helping me manage my symptoms and interestingly, they make the treatments I receive from my health care team more effective. It just required me to shift my thinking so I was able to accept that doing “nothing” from time to time was actually a form of loving, personal care that enhanced my overall well being.


If you are struggling with taking time to care for yourself, whatever that means to you (taking a nap, getting a massage, going to the gym, reading a book, meditating), change how you look at it and/or what you call it. We rarely to never feel guilty when we are sick and have to see a doctor for care, so why should it be any different when we care for ourselves?


To learn more about self care and coping with the many things that accompany life with dystonia and any other challenge, be sure to get a copy of my book, Diagnosis Dystonia: Navigating the Journey. A print version is available on this website and the Kindle version on Amazon. To see what others are saying about it, please read the many positive reviews. 

 

Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

 

How social media may fuel depression

Posted on April 3, 2016 at 5:30 PM Comments comments (4)

How social media may fuel depression

 

Have you ever played the social media comparison game? If you have, you are not alone. Most people at one time or another have gotten caught up in what I call a “comparathon”, where they measure the success of their lives against others based on what they see in posts on various social media. Often times, people feel they don’t measure up to the seemingly full and happy lives of others, which can cause changes in mood. Numerous studies have shown the negative effects of social media (as well as the positive, so there are pros and cons), especially with people who already live with anxiety and depression. Add in a physically limiting health condition (such as dystonia, which I live with) and it can be exponentially worse for some.


For many, due to the inability to be as comfortably mobile as they once were, much of their interaction with the world is through social media; the place where there are pictures and videos of their friends living as if they don’t have a worry in the world. You may even see people with health challenges similar to yours who are living what appears to be a pretty normal life and involved in more activities than you. This can further aggravate depression because you feel like you are missing out on everything, but there is good news…


…what we all know but often forget is that the lives that many people display on Facebook, Twitter, Instagram, etc., don’t tell the whole story. It is a microscopic view of their lives. For some people it IS as exciting and fun as they illustrate. For many others, it isn’t as fun and easy going as we interpret. Everyone has challenges, some of whom hide them very well and only show the fun things in their lives. This gives others a skewed perception of reality.


Don’t get me wrong, there are lots of very happy people living their lives, having a ball, and portraying it on social media exactly as it is, but there are also many who give this appearance when it doesn’t exist. For many, social media is an escape from their own painful reality.

 


Behind many of the “happy” images, we don’t see or hear about financial problems, marriages breaking up, kids struggling in school or into drugs and alcohol, health issues, depression, stress, anxiety, worry, fear…the list is endless. Many people who seem to have the perfect life often live with the same things that haunt the rest of us. We are not alone in any of our worries or concerns by a long shot. If you are human, you have issues…simple as that. Do your best to get rid of any envy you may have. You are just as worthy as anyone else.


Further, if you spend a lot of time on support group sites where people talk about all the problems they are having, this can cause you to worry more about how your health issue might progress. We may also take on the burden of others due to our empathetic nature. This being the case, balance your time on social media and the outside world.

 

As a health and wellness coach, I work with people who have chronic health conditions, anxiety, depression, weight issues, etc., and many of them become more unhappy and unhealthy because of what they see on social media. Even the people I work with who don’t have “problems” become more depressed by some of what they see. So, it is not just people who have limiting health conditions that are negatively impacted. Social media induced depression can affect anyone. It is especially challenging in the winter months when people are stuck indoors and for those who have Seasonal Affective Disorder (SAD) which causes a shift in moods.


With all of this in mind, the next time you are looking at pictures and videos of others on social media and feeling depressed about your life because it isn’t you in those images, remember that this is just a small window into their lives. For most, there are challenges behind all the “happy” smiles so please do not view everything you see on social media as the whole story. In fact, you may be happier than the people you perceive as “living the life.”


HOWEVER, to contradict everything I just said since my focus is primarily on the negative impact of social media, I suggest practicing “letting go”, if you will. Be happy for others and all the things they are doing in their lives and sharing with us; acknowledge them for the fun moments they enjoy. This is a much healthier way to process what you see. Sharing in each other’s happiness and joy will help us all feel better. Even if what is displayed isn’t the whole story, big deal; share in the happy moments because we all have them. Just keep things in perspective so you don’t get too down when you decide to compare your life with someone else.

 



Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone living with any life challenge. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @Dystoniabook1

Dystonia and Stress Management

Posted on March 20, 2016 at 7:35 PM Comments comments (1)

Dystonia and Stress Management

As we all know, stress and dystonia do not mix. It can have a negative impact on our symptoms, such as increased spasms, twisting, pulling, pain, anxiety, headaches, physical weakness, increased tension, sleep interference, and many other problems.

 

A dystonic body is under significant stress during normal circumstances, making our response to additional stress potentially catastrophic. Stress can affect us to such an extent that our nervous system is always aroused, keeping us trapped in fight or flight mode because our body is conditioned, particularly if we are in pain, to always be on guard.


If stress is prolonged, adrenaline and cortisol maintain tension in the body. Over time, muscle tension can become habitual which pulls the body further away from relaxation. You may reach a point where you are no longer aware how constricted your muscles have become, and relaxing them can be very difficult. In fact, if you try to relax, your muscles may tighten even more because they have forgotten what letting go and relaxing feels like. This is why mind/body relaxation exercises are vital.


When I was researching the topic of stress for my book, Diagnosis Dystonia: Navigating the Journey, I came across something very intriguing. Stress experts have now added the word “freeze” to the fight or flight response with respect to the fact that instead of fighting or fleeing, we might sometimes freeze (like a deer in headlights) in painful or traumatic situations. This is very intriguing to me as it relates to dystonia.


The fight or flight stress response becomes activated when we believe there is a chance we can outfight or outrun our attackers (or any perceived danger and stressful situation). The freeze response differs in that it gets activated due to a perceived or real inability to take action (like a mouse trapped in a corner by a cat). In essence, one feels helpless to fight or flee the threatening, painful, or stressful experience so it freezes. Doesn’t this helpless feeling sound similar to living with dystonia?


During the freeze response, the body becomes both tense and paralyzed at the same time. The thoughts, sensations, and emotions of the stressful experience become suppressed or internalized, not only in the mind but in the tissues of the body. This is called somatic memory (body memory) and can have damaging effects if the event or trauma experienced is not processed in a healthy way.

Think about the common symptoms of dystonia which include contractions, stiffness, and rigidity. Out of fear of worsening our symptoms, many of us live in “protection mode” where we consciously restrict our movements (to the best of our ability) to try and decrease pain and/or involuntary movements.


Purposely restricting our movements, avoiding activities that may increase our symptoms, and holding ourselves in postures to prevent further pain and involuntary movements is similar to the freeze response. This adds more stress than already exists. We rarely to never let our bodies “be” in pain or move as it wishes, so we keep ourselves stuck in crisis.


Keeping muscles tense drains much more energy than keeping muscles relaxed, which is one reason so many of us with dystonia experience intense pain and fatigue. This is why practicing relaxation exercises are so important because it is only when the body finds relaxation that it can reverse the damaging effects of stress.


What would happen if we just allowed our symptoms to be what they were without mentally or physically trying to fight them? Easier said than done of course, but think about the possibility of just letting go and embracing the pain and involuntary movements.


Since relaxation and healing are prevented when the freeze response remains active, if we get our intellectual brains out of way, perhaps we might be able to reduce our symptoms. It certainly merits consideration because the body is better able to remain balanced, vital, and adaptable to new experiences when we don’t fight what is wrong with us so much. In other words, when we are not in a mentally and physically tense state, our bodies are more susceptible to health.


Stress management tips: 

  • Deep breathing and progressive muscle relaxation. Stop what you are doing. Breathe gently, but deeply, from your abdomen. On the out breath say to yourself, “Be calm. Be peaceful.”
  • Allow time to pass. When we stress, everything can feel like an emergency. This is all about anxious arousal, which is temporary. Every feeling of panic comes to an end; every concern wears itself out; and every so-called emergency evaporates
  • When you are rushed say, “There is plenty of time. Stay calm.”
  • Talk to family, friends, therapist, or support group about the situations you find stressful
  • Listen to music
  • Keep a journal
  • Spend time in prayer and meditation
  • Eat a balanced diet of healthy carbohydrates, proteins, and fats. Avoid caffeine, sugar, and white flour products
  • Exercise if you can; modify activities to accommodate your symptoms
  • Laugh! Watch a funny movie or go to a comedy club. Tell jokes. If you don’t know any, learn some. Spend time around babies and animals. Watch something funny on television or YouTube
  • Avoid isolation. When we lose connection with others it can intensify stress, as well as depression, loneliness, fear, and anger
  • Accept help when it is offered and ask for help when you need it
  • Get outdoors and spend time in nature; it can be very grounding
  • Do not argue about things that are unproductive
  • Avoid people who cause you stress
  • Don’t waste time worrying about what could have been. The past is over. Focus on the present moment
  • Simplify your goals
  • Pace yourself
  • Engage in fun, pleasurable activities as much as possible

Edited excerpt from Diagnosis Dystonia: Navigating the Journey, by Tom Seaman


Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

The hidden opportunities within our problems

Posted on February 21, 2016 at 12:25 AM Comments comments (2)

The hidden opportunities within our 'problems'
by Tom Seaman


Life is filled with endless opportunities. Sometimes the opportunities, or silver lining, are hard to see when we have problems with our health, finances, family, or career, but they exist. When we shift our thought patterns, good fortune will always be revealed.


As Napoleon Hill wrote in Think and Grow Rich, “One of the tricks of opportunity is that it has a sly habit of slipping in by the back door, and often it comes disguised in the form of misfortune, or temporary defeat. Perhaps this is why so many fail to recognize opportunity.”


Instead of recognizing the opportunities that lie within our “misfortune”, we often get angry and become closed minded. Some even feel vengeful, as if the world is out to get them. It is imperative that during these times we persevere, open our minds, and really pay attention. It is then that we realize that life is happening for us, not to us.


This perspective helps us remain hopeful in the present moment and about our future. It also allows for tremendous growth to take place, as it is during difficult times that we learn the most about ourselves. Challenges require us to truly look deep inside to find the life changing lessons. This is one of the gifts, or beauty if you will, of “problems.” They teach us character and how to be mentally and physically resilient.


Fifteen years ago, my life dramatically changed when I developed a painful neurological movement disorder called Dystonia. It has been the greatest challenge of my life, but also my greatest teacher. When I learned to live with it and not fight it so much, new doors opened for me to learn and grow. I had to work with it to find peace and healing. This gave me a new outlook on a life I thought was taken from me by this health condition. Dystonia changed things in major ways indeed, but it opened doors to important life classrooms.




We can’t change anything until we accept it. We have to stop saying life shouldn’t be this or that way; it should be this way, because it is this way! We have to stop resisting what is, move forward, and make great things happen.


With this in mind, I made a promise to myself. I said, “I do not know why this health issue happened to me and I lost everything, but I do know one thing for sure; something great is going to come from it because I refuse to go through this for nothing.” I first heard this from author and motivational speaker, Sonia Ricotti. I carry it with me every day and great things continue to happen

 

Be thankful for closed doors. They often guide us to the right one. Be thankful for what you have and you will end up having more. Don’t start your day with broken pieces of yesterday. Today is a new day to start fresh. Every day is another chance to change your life.


A healthy way to deal with problems is to look at them as opportunities for growth.
- C Norman Sheely, MD, PhD -


Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey. To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

Asking for help when living with dystonia

Posted on February 9, 2016 at 3:25 PM Comments comments (2)

Asking for help when living with dystonia


Edited excerpt from the book:
Diagnosis Dystonia: Navigating the Journey

 

I have lived with dystonia for 15 years. For more than half of those years, I had a hard time asking for help. My ego stood in the way. I was certainly helped significantly by my loved ones, but it came with guilt, until I put myself in their shoes. They wanted to help. They just didn’t always know how and I didn’t know how to ask because I struggled with the reality that I had limitations.


When my symptoms were more severe than they are now, I had to fly across the country to a clinic. Because of the intense pain standing upright and walking, my parents wanted to get a wheelchair for me to use in the airports. Just the idea of that at the time was beyond shocking….me, a former competitive athlete in numerous sports and well seasoned traveler needing a wheelchair? Never! Boy was that silly. I really needed that wheelchair, but because of my ego I suffered much more than I had to.

- Quick side note - the other day I was in the hospital emergency room for an unrelated issue. I accepted a wheelchair every time it was offered. I even asked for one when it wasn't offered because I needed it. If only I did that in the airport. It would have been a much easier trip!


One of the emotional barriers asking for help is feeling guilty for having a condition where we need help. It causes us to experience negative feelings about ourselves; a sense of shame and unworthiness, which leads to isolation. Sharing our feelings with others helps break this isolation and any shame we might have.


I also become negligent asking for help because I felt like a burden to others. Interestingly, they often felt guilty and a burden to me because they didn’t know how to help. This is where clear communication is vital by letting others know what we need and also to let them know that we are here for them as well.


When I finally realized that it was okay to ask for and accept help, and that I was not being a burden, my life and those around me began to change. Life became much lighter for all of us. I learned that asking for help and relying on other people when necessary does not indicate weakness or failure. It is a sign of strength. It takes courage to admit we need help, especially when we are so used to an active, fully functional life.




We are also not the only ones who live with dystonia. Our friends and family experience pain as well, as they sit by feeling helpless watching their loved ones struggle. This can put a lot of stress on friendships, marriages, and other relationships to the point that they can be dramatically altered or even end. As much as we want to be understood by others, others want to be understood by us just as much. Please be sure to give your loved ones the opportunity to share what they are experiencing.


While some relationships have ended because of the life changes associated with dystonia, many new ones began and some existing ones have become stronger. It is all a matter of how we deal with it individually and collectively. We need to listen just as much as we talk, if not more. An open door policy with any challenge in our lives is the best way for us to help one another and strengthen our relationships.


Many helping hands are there for us. We just need to reach out. To feel comfortable allowing others to help us, we have to overcome the fact that we sometimes need help. All people do in one way or another.
 

Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is also the author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

 

Dystonia and Post Traumatic Growth

Posted on January 15, 2016 at 5:30 PM Comments comments (0)

Dystonia and Post Traumatic Growth

 

We often hear the term Post Traumatic Stress Disorder (PTSD), a mental health condition triggered by a traumatic event. PTSD is commonly used in context of military personnel returning from active duty, but it applies to anyone who has faced traumatic events such as sexual or physical assault, an acute or chronic health condition, natural disasters, the unexpected death of a loved one, or an accident.

 

Families of victims can also develop PTSD, as can emergency personnel and rescue workers. Symptoms may include flashbacks, nightmares, and severe anxiety, as well as uncontrollable thoughts about the event.

 

Most people who experience a traumatic event will have reactions that may include shock, anger, nervousness, fear, and even guilt. These reactions are common and for most people, go away over time. For a person with PTSD, however, feelings of intense fear, helplessness, or horror continue and may even increase, becoming so strong that they keep the person from living a normal life. Some people with dystonia experience PTSD.

 

A term we hear far less about, if at all, is called Post Traumatic Growth (PTG). PTG refers to people who become stronger and create a more meaningful life in the wake of tragedy or trauma. They don’t just bounce back, which is resilience; they bounce higher than they ever did before.




This concept is not new. For centuries people believed that suffering and distress can yield positive changes. It wasn’t until 1995 that the term Post Traumatic Growth was coined by Richard Tedeschi, Ph.D., and Lawrence Calhoun, Ph.D., psychologists at the University of North Carolina, Charlotte.


PTG is characterized by people changing their views of themselves, such as an increased sense of strength; “If I lived through that, I can face anything.” They tend to show more gratitude and have greater acceptance of their vulnerabilities and limitations, and also develop a sense that new opportunities have emerged from their struggle. Relationships are enhanced; people come to value their friends and family more, feel an increased sense of compassion for others and a longing for more intimate relationships.


They can also experience an increased sense of connection to others who suffer, which is evident in the support groups many of us belong to where we find great empathy and compassion. They gain a greater appreciation for life in general, finding a fresh, positive outlook each day; they re-evaluate what really matters in life, become less materialistic, and are better able to live in the present. Another common feature is a change or deepening in spiritual beliefs.

 

I was never diagnosed with PTSD, but I lived through periods of intense fear, anger, desperation, and hopelessness after experiencing a dramatic shift in my life due to dystonia. Having worked through a lot of these emotions over the years, I have seen a significant amount of growth.

 

I appreciate many things I once took for granted. I realize how fragile life is and how it should be honored by treating ourselves and others with love and respect. I have a much deeper appreciation for people who struggle with life challenges. I have come to better understand the meaning of loss which has increased my ability to live in gratitude. I have also found greater meaning to my life and feel a deeper spiritual connection.

 

Dystonia and any other life challenge can truly be a source of growth for all of us in ways we probably never imagined, and research has shown that in the face of great challenges, significant human and spiritual growth can occur. In order for it to take place, it is crucial that we are open to the possibilities that lie within our “misfortune.” We must abandon hatred and anger, for it will only worsen the pain we feel, preventing us from any kind of growth. Every experience is an opportunity to learn and reach a higher level of being.


Tom Seaman is a dystonia awareness advocate and certified professional life coach in the area of health and wellness. He is a support group leader for the Dystonia Medical Research Foundation (DMRF) and author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

 

Dystonia and the opinion of others

Posted on January 14, 2016 at 5:05 PM Comments comments (6)

Dystonia and the opinion of others


While I truly believe that people are well intended, their opinions and comments often miss the mark when it comes to what we experience living with dystonia. Some of the many things we hear include:

 

“It's all in your head.”
“You're just having a bad day.”
“Everybody gets tired.”
“You're just depressed.”
“You'll just have to tough it out.”
“If you would just get out more.”
“There are people worse off than you.”
“It can't be that bad.”
“If you would just exercise more.”

 

Most of these comments come across as judgmental, but I don’t think people are trying to hurt us. They just hurt sometimes because each statement feels like a harsh opinion not based in reality.


When my dystonia was more severe, I mentioned to someone that I felt lost without my watch. She reacted by saying, "What do you need a watch for? You don’t do anything or have any responsibilities." Unbeknownst to this person who rarely saw me and had a very small window into my world, I did have responsibilities of which she was unaware. Many were related to managing my symptoms so I could have some level of function during the day, which was the hardest job I ever had in my life. At the time I was very angry, but I rose above it because I knew she wasn’t aware of my challenges so she didn’t know any better. It still wasn’t very nice to say.


 

While I value the opinions of people in my life, I had to learn to be independent of the opinion of others. For my own sanity, I must live my life the best way I know how so I am most comfortable, regardless of what others think. Someone’s opinion of me does not have to become my reality.


Finding relief should be our number one priority, or at least at the very top of our list; not pleasing others. Family, friends, and co-workers should respect us for this. I doubt any of them would like to be in our shoes. We need to put ourselves in a position of power and not accept labels that may be put upon us such as lazy, mental, apathetic, sympathy seeking, hypochondriac, or any other thoughtless title sometimes associated with a chronic condition. We need to be careful not to label ourselves either. We should wear our challenges as armor. Not as shackles.

 

Pace yourself and let others know that you might need to take a break once in a while or that it might take a little longer for you to do something. Ask for their patience, but more important, be patient with yourself. Take responsibility for your condition in order to make the best decisions for yourself. This is your life. Own it and live it how you choose, independent of what others think.



 

Life is deep and simple.
What society gives us is shallow and complicated.
Be a first rate version of yourself.
Not a second rate version of someone else.

 

Tom Seaman is a dystonia awareness advocate and Certified Professional Life Coach in the area of health and wellness. He is a support group leader for the Dystonia Medical Research Foundation (DMRF) and author of the book, Diagnosis Dystonia: Navigating the Journey (2015). To learn more about Tom and get a copy of his book, visit www.diagnosisdystonia.com. Follow him on Twitter: @dystoniabook1

 


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