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by Tom Seaman, BS, CPC

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Dystonia Education Blog with Tom Seaman

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Dystonia and the Highly Sensitive Person

Posted on December 25, 2015 at 2:20 AM Comments comments (5)

Dystonia and the Highly Sensitive Person

 

I believe that people with dystonia and other disorders have very similar personality traits. One such trait, or rather, set of personality traits I find common among those with dystonia is HSP or “Highly Sensitive Person.” An “empath” is similar to an HSP. An HSP is a person having the innate trait of high sensory processing sensitivity (or innate sensitiveness as Carl Jung originally coined it). Roughly 15 to 20 percent of the population is considered HSP.(1)

 

In her book, The Highly Sensitive Person (1997), Dr. Elaine Aron outlines the characteristics of an HSP and how to live more easily in our often chaotic world. My use of the word chaotic is an indication that I have characteristics of an HSP. On the surface, being called “highly sensitive” could have negative connotations, but an HSP has many desirable traits.


 


Common traits of an HSP include great imagination, a curious mind, high intellectual abilities, creativity, conscientiousness, and compassion. They are hard workers, problem solvers, objective, and able to see the big picture. HSP’s also have profound and intense sensations, and tend to process events in their lives deeper and more intensely than others. This is due to a biological difference in their nervous systems which often makes them intuitive, assertive, and strong willed.

 

On the other hand, HSP’s can take things too personally, overanalyze things, feel defensive, experience social discomfort, are easily aroused, are sensitive to subtle stimuli, shy, sensitive to the moods of other people, and hold onto intense experiences and emotions.(1-3)


Typically an HSP demonstrates greater caution and reluctance than the non-HSP population with things such as taking risks, trying new experiences, meeting new people, and venturing to unfamiliar places. Then there is the other extreme – roughly 30 percent of HSP’s are thought to be extroverts and sensation seekers.(1-3)


Most people I know with dystonia have many HSP qualities. This is neither good nor bad. The important thing is being mindful of your tendencies so you can use your personality traits to your advantage to progress forward and work on those that are holding you back from where you want to be.



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

References
1) Aron, E. The Highly Sensitive Person. (1997) Broadway Books, New York, NY
2) www.huffingtonpost.com, Retrieved on January 22, 2014 from: http/www.huffingtonpost.com/roya-r-rad-ma-psyd/highly-sensitive-people_b_1286508.html
3) www.webmd.com, Retrieved on January 22, 2014 from: http/www.webmd.com/balance/features/are-you-too-sensitive



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

 

I no longer choose to be a victim of dystonia

Posted on November 16, 2015 at 4:50 PM Comments comments (3)

 I no longer choose to be a victim of dystonia
by Tom Seaman

 
When my dystonia was at its worst, the brutal pain significantly limited what I could do. For years I characterized dystonia as an evil intruder that ruined my life. What I could no longer do was my only focus, which caused great anger and depression. I was so bitter that I ignored everything I could still do and let myself become a victim.


Feeling like a victim is normal when diagnosed with a serious health condition like dystonia, but it is self destructive if we remain in this state of mind. We become isolated, depressed, bitter, angry, and resentful. Victims always find something wrong and live a life of excuses. We all probably know people like this.


Victims will ask, “Why me?” in a sulking and moaning “poor me” manner when something happens that they don’t like. Asking “Why me?” in an inquisitive manner is more proactive and might yield more answers because it puts us in the role of an unattached observer where we can be more objective.


For the first several years with dystonia, I was miserable. I had a lot of negative self talk about how I could no longer do the things I loved so much. I felt a deep sense of loss and was extremely frustrated. This caused a lot of anger and sadness which made my dystonia worse because negative emotions cause increased muscle tension. I had to shift my thinking if I wanted to live a happier and healthier life.


I had to get out of the “Why me, poor me?” frame of mind if I wanted freedom from my mental anguish. Instead of asking, “Why me?” I began asking, “Why not me?”, “How can I learn to live with dystonia?”, and “How can dystonia help me learn and grow?” I was no better or worse than anyone else so if it happened to me, so be it. There was nothing I could do to reverse things so I needed to learn to accept it and find the good in it, even when I was in ridiculous pain and could barely function.



Release the past
A big part of the victim mentality is due to being stuck in the past; how life was before dystonia. Find a way to release the past. It is not who you are. You can be whomever you want right now. You just need to make the choice, set the intention, and act it out. By no means is it as easy as I am making it sound. I completely understand that it is a process that unfolds one day at a time. We just need to allow ourselves to let it unfold so we are free to live our lives.


I would like to say that I freely do whatever I want whenever I want, but that is not always the case. There are days when things are far too uncomfortable. Therefore, I live my life within the boundaries of my abilities and accept that I can’t always do everything I want. If I don’t accept this reality, I will mentally torture myself when I miss out on things. When I am able to do more, I enjoy the hell out of myself!


The only thing we can change about most things is how we respond to them. I have come to better accept the challenges I live with. I have learned that each day is different and I have to roll with the punches. Every night I go to bed praying I will wake up with fewer symptoms than I had the previous day. If this does not happen, I am better at not fighting what I can’t change physically about myself in the moment. I can only change how I respond to how I feel and be grateful for what I am able to do on that given day.


In order to be happy, we can’t dwell on what once was. All we have is the present moment so that is where our focus needs to be. When we focus on the abilities we have now, acceptance follows, giving us greater peace of mind.

The most beautiful people we have known are those who have known defeat,
known suffering, known struggle, known loss, and have found their way out of the depths.
These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.

- Elisabeth Kubler-Ross -


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

How do we find ourselves? Get lost!

Posted on November 6, 2015 at 11:20 AM Comments comments (1)

How do we find ourselves? Get lost!
by Tom Seaman


In the summer of 2001, I developed a neurological movement disorder called Cervical Dystonia (CD). In the very beginning, I saw chiropractors, medical doctors, massage therapists, physical therapists, psychologists, and orthopedists, none of whom helped or even knew what was wrong. Within 8 months and with no diagnosis, I was disabled to the point of barely being able to function.

Utterly frustrated, I stopped all care and began researching the internet like crazy where I discovered cervical dystonia. I then sought out a movement disorder neurologist who made the official diagnosis. Whew! What a relief…sort of. Now what? What do I do with my life now? I had a diagnosis but I was in too much pain to continue pursuing my masters degree and I certainly couldn’t work. Social events were also out of the question. It was just me and the TV all day long. Even worse, no treatments at the time were helping.

So I did the only things I knew how to at the time. I grieved. I cried. I yelled. I retreated from the world. I drank alcohol to medicate the mental and physical pain. I ate a horrible diet and gained 150 pounds. I wanted and waited to die. Melodramatic? Perhaps, but that literally was my reality for 5 years.

Something miraculous then happened in December 2006. I got sick! Yes, believe it or not, getting a major stomach flu saved my life. My dystonic body was forced to relax in bed and do nothing. Interestingly, my symptoms receded a bit which helped me think more clearly. Did I want to live? Was there a purpose to all of this? A resounding yes to both was screaming in my head. I realized that I had lived what I now view as the greatest gift ever. For 5 years, I had my life as I knew it taken from me so I could build a better one!

When the stomach bug flew away after 2 weeks, I changed my lifestyle back to what it was before dystonia set in. I ate well, I exercised, I practiced stress management, I saw good doctors, and I forgave myself for the guilt I put myself through for developing a life altering health condition. Within a year, my dystonia symptoms improved significantly and I lost the 150 pounds I gained. Life was fun again! Even though I still had challenges, and still do to this day that I have to carefully manage, I found my purpose...to help others.

I enrolled in a school to become certified as a health and wellness life coach. It took me two years to complete the program and when I did, I had a sense of accomplishment unlike anything in years. I knew exactly who I wanted to work with; that of course being others like me who were living with chronic health conditions and dealing with weight issues.

But it didn’t stop there. I had to do more. Two years later, I published a book! Me…the guy that once rolled around on the floor in writhing pain all day long wanting to die. A miracle? I don’t think so. Just an awakening to a life that went off course for a little while.



You see, I had to get lost before I could find myself. I had to lose all purpose in life to find my purpose, which I now know is to teach and help others. I believe that is the purpose for all of us and we all do it in our own special ways. I just needed the gift of dystonia to show me my way.

As Charles Lindbergh said, “Success is not measured by what a man accomplishes, but by the opposition he has encountered and the courage with which he has maintained the struggle against overwhelming odds.” For me, dystonia was my opposition. Now it is my partner in helping others improve their quality of life and find meaning and purpose.

 

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


Does it Work? Not the best question to ask about dystonia treatments

Posted on November 2, 2015 at 3:35 PM Comments comments (0)

 

“Does it Work?”
Not the best question to ask about dystonia treatments

 

There is currently no cure for dystonia so treatments are focused on reducing symptoms. A treatment that helps one may not help another, or help as much, so there is no cookie cutter approach. Thus, finding the right treatment/symptom management program can take some trial and error.


Whatever your treatment of choice, it is important to know beforehand how you will evaluate its usefulness; in other words, your expectations. When discussing a particular treatment I often hear people ask, “Does it work?” This is a vague question. “Work” in what way? Reduce symptoms, reduce pain, reduce spasms, eliminate dystonia altogether?

 

Anything might “work” so we need to be more specific to satisfy our personal definition of the word “work.” Plus, what works for one may not work for someone else so we have to experiment to find what is best for us based on our desired outcome.

 

Perhaps a better question is, “Does it help?” Better yet, asking something even more specific such as “Does it reduce pain?” or “Does it ease muscle contractions?” would be more appropriate. We all experience similar symptoms, but what is most significant to us differs. Thus, our questions should pertain to that specific symptom.

 

Every treatment and symptom management protocol available to us has the potential of helping so it is best to be open-minded to every possibility. If we get 20% help from one treatment, 10% from another, and 15% from another, it starts to add up. Use anything and everything that helps.



Also keep in mind that just because something has not been approved as a treatment for dystonia does not mean it is ineffective for dystonia. There are plenty of FDA approved treatments that are ineffective for some of us so this standard is not absolute. Further, there are no specific medications for dystonia, but medications used off label have proven effective. This being the case, especially with a complex disorder like dystonia with so many symptom variations from person to person, every single thing that may help manage our particular symptoms deserves our attention.

 

No matter which symptom management approach you use, one of the most important things is to establish is a good working relationship with those who treat you. The more your health care team knows about you and your body, the better they can identify what is and is not working.

 

When you have a close relationship with your team, they can follow patterns and determine what changes need to be made, if any. In addition, the more informed you are about your treatment plan and goals, the more likely your chance for success. Educated patients are more prone to better treatment results.

 

One of the most important aspects to any treatment is how much we believe it is going to help. Our dedication to a treatment and belief in its efficacy is just as important as the treatment itself. Trust is a big factor in our body’s ability to positively respond to a particular treatment.

 

Treating dystonia is not a sprint. It is usually a meandering journey on a trail with many side paths. Close monitoring by you and your health care team is paramount to best managing your symptoms. Having people on your side that you can talk to and count on in times of need is priceless. When we have the added comfort that we are truly being cared for by those who treat us, it has a profoundly positive effect on our overall well being.

 

The length of benefit for all treatments should be noted because every day our bodies endure new stresses and strains. We are different every day in terms of how our body is functioning and how we respond to treatments. When we go for any kind of treatment, we can't expect that we will get the same results each time. Our mind and body are always changing so "who" the doctor/therapist worked on during the last visit is different this visit. Thus, the doctor/therapist has to adjust their approach to meet the needs of you that day and not the you they saw at a previous visit.

 

When I was grappling with expecting to get the same results after every treatment, one of my doctors shared the following quote by the Dalai Lama: “I am open to the guidance of synchronicity and do not let expectations hinder my path.” I recite this at every visit, regardless of what kind of doctor or therapist I am seeing. It helps me let go and allow the treatment to do its job.


Tom Seaman is a dystonia health advocate and certified professional life coach in the area of health and wellness. He is a supprt 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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