Saturday, September 16, 2017

What is dystonia and what does it feel like?

September is Dystonia Awareness Month so I wanted to provide some information about what dystonia is and how it feels. Please share this with your family, friends, doctors, and anyone you think might find this helpful. I am going to give the general definition of dystonia first, and then provide information about how it feels and the impact it has on our lives, which is the hardest part to understand.

Dystonia is a neurological movement disorder characterized by uncontrollable, involuntary muscle spasms and contractions, causing repetitive movements, twitching, twisting, and/or abnormal postures. Muscle contractions can be sustained or intermittent and sometimes include a tremor. Dystonia can affect any part of the body, causing varying degrees of disability and pain from mild to severe. In some cases, dystonia exists without visual symptoms. Some people have muscles that involuntarily contract, but they have no change in physical appearance. Pain is almost always present regardless of physical presentation. People often describe their muscles as feeling like tightropes.

Unless you live with dystonia, it is very hard to understand what all of these symptoms mean or what it feels like, let alone the psychological, social, 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 nearly 20 years ago. It has challenged me unlike anything ever before. You can see in my photos below how dystonia can affect my body. It turned my world upside down and has taken me many years to find my bearings and treatments that make me more functional. Not wanting others to suffer this same torture, I made it my mission to educate people about it, so I became an active patient advocate. I also wrote a book about it that was recognized by the Michael J. Fox Foundation. It is called, Diagnosis Dystonia: Navigating the Journey. I encourage you to get it for yourself, your loved ones, and your doctors. You can learn more about it if you click here. Use the coupon code AWARE for a 20% discount this month.


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 my video for some ideas.



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. Clearly, 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 every ounce of will power to get out of bed to just eat breakfast, and that was all I could do all day. A far cry from the life I lived prior to dystonia!

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 Certified Professional Life Coach in the area of health and wellness, and author of the book, Diagnosis Dystonia: Navigating the Journey, a comprehensive resource for anyone suffering with any life challenge. He is also a motivational speaker, chronic pain and dystonia awareness advocate, health blogger, and volunteers for the Dystonia Medical Research Foundation (DMRF) as a support group leader, for WEGO Health as a patient expert panelist, and is a member and writer for Chronic Illness Bloggers Network. To learn more about Tom’s coaching practice and get a copy of his book, visit www.tomseamancoaching.com. Follow him on Twitter @Dystoniabook1 and Instagram

http://www.diagnosisdystonia.com/


6 comments:

  1. Hi Tom. Writing you to see if you think your book can help ne!? Im messed up bad! Going on 20 months of pure hell!!! Have many neurological issues caused by med induced chaos... tardive dyskinesia, many dystonia issues, permanent and degenerative neurological problems...all acquired in 20 months! I just wrote a long entree to you, but it was too long and got kicked out. Ill save it though, if and/or when you contact me back! I can send it in messenger, text, or email. My website is WWW.IBleedArt.com if ya wanna see me BEFORE I got sick. My email is getting shut down on May 15, 2018, so Im just gunna put it out into internet land. Really dont care if I get spammed for doing it...as I already get about 400 spams a day! BonnTx@lycos.com THANKS for helping me realize im NOT the only one who experiences such debilitating pain 24/7! My main pain is a hard cantaloupe sized lump in my belly, and feels like a giant charlie horse twisting up all my guts in my tummy, like a huge nest of water moccasins...twisting around eachother!!! OR... Maybe, theres an industrial Kitchen Aid mixer in my belly...flopping and twisting my guts around the paddles! Thats pretty accurate too! Peace, fellow TWISTED PERSON!!!
    Bonn

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    1. I am very sorry for everything you are going through. Although I have dystonia in a different part of my body, your descriptions for how it feels are very familiar. I think my book is helpful for anyone who has dystonia and with so much you have been through and continue to go through, I think you would find it to be a very useful tool.

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  2. ALL THANKS TO DR WILLIAMS WITH HIS HERB MY WIFE WAS COMPLETELY CURED FROM DYSTONIA.
    Is my pleasure to comment on this site and i thank the admin of this site for his/her great work so far.one of the happiest moment in my life was when the doctor confirm that my wife is been free from this illness. this awesome moments makes me the happiest man on earth, I really don't know how to thank DR WILLIAMS for helping my wife get cured for over how many year of suffering from dystonia. i came across DR Williams contact through a headline news on internet about how DR Williams help a woman to get cured of her dystonia and so many other with similar body problem ,i contacted him and he told me how to get his herb,few day later he sent me the herbal portion which my wife take every morning for 28 days, and his medicine was able to cure her completely from dystonia. and now she very mush okay without any side effects whatsoever, If you have dystonia, you can contact him on his email address drwilliams098675@gmail.com for advice and for his product.

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  3. ALL THANKS TO DR WILLIAMS FOR THE GREAT DEED HE HAVE DONE FOR MY DAUGHTER?
    My daughter suffered from dystonia for more than 7 years which we started experiencing in her when she turned 4 year and 5 months we all thought it will end but got even worse as days went by. We tried all several treatments and therapy prescribed by various doctors we met but to no avail, she lost total concentration and always complain of neck discomfort . She usually tells me she haves jerky head movements . This were steady disorder that disrupted her entire life, even at night she slept less because of this.It was during a casual conversation with a friend that i learned about Dr Williams herbal medicine I was able to contact him on his email address. and give him all the necessary information that he needed,few day later he sent me the herbal portion and his medicine was able to restore her back to normal and she is very okay now without any side effects whatsoever. If you have dystonia , do not hesitate to contact him on drwilliams098675@gmail.com for advice and for his product. I hope this also helps someone out there.

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  4. Dear FRIENDS,
    now i have a beautiful smiling face and so are which you all, after reading my testimony. My name is kate, I am 31 years old,
    And live with my boyfriend in Belgium, but I am UK. I was diagnosed in 2012 with cervical dystonia/spasmodic torticollis. Doctors told me this condition was forever. I know how you feel and what you are going through, I don't have a baby though. I just want to tell you that I am cured now,with the help of doctor williams herbal medication, the last time I can remember having cervical dystonia was in the summer of 2016. It was a long and difficult process but I am so thankful to dr williams I don't have it anymore. Please know you can be cured too. Accept what happened and is happening to you, forgive, let the past go, love yourself and others unconditionally and be thankful. Everything happens for a reason. If you want to be in contact with dr williams and share your own testimony and thoughts feel free to e-mail him on; drwilliams098675@gmail.com for advice and for his product.

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