Interview – Managing the physical and emotional aspects of dystonia and pain
I was recently interviewed by Matthieu Creson for AMADYS, the French Dystonia Association, to share my experience living with dystonia for nearly 20 years, as well as my thoughts about managing the physical and emotional aspects of this condition. This interview also appeared in the NSTA Magazine (National Spasmodic Torticollis Association) and ADDER Magazine in the UK (Action for Dystonia, Diagnosis, Education, and Research).
AMADYS is the French Dystonia Association that is part of Dystonia Europe. Its mission is to spread dystonia awareness, reduce diagnostic wandering, and promote appropriate and earlier care through its website, brochures, an annual medical symposium and other events for the general public. They also develop relationships with the medical profession through the Scientific Committee, an integral part of the Association, and ensures permanent contact with CHUs and Treatment Centers.
Matthieu: Hello Tom, thanks a lot for agreeing to answer these few questions for Amadys. Let me briefly introduce you to our readers. You’ve had cervical dystonia since 2001, you’ve been through a lot since then but you are now doing much better! You’re working as a Certified Professional Life Coach in the field of health and wellness and you published a book titled, Diagnosis Dystonia: Navigating the Journey, that was recognized by the Michael J Fox Foundation and is on their list of suggested resources. It was also featured in Pain Pathways Magazine and Pain Free Living Magazine. Not only do you describe in your book your own personal experience with being diagnosed with dystonia and with living with the condition, you also provide the reader with a remarkable amount of very useful information, tips and advice, on a wide array of concrete issues people coping with dystonia are well familiar with. What exactly led you to decide to write a whole book on dystonia and on how to live with the condition?
Tom: Thank you, Matthieu. It is an honor to contribute to the work you are doing with Amadys to help others with dystonia! I decided to write the book for a several reasons. When I was first diagnosed, I purchased every book on dystonia that was available, which was not many at all, to my surprise and disappointment. In recent years, I find the same to be true. While I was able to learn a little about dystonia from these books, I felt they were all missing a lot of necessary and important information that I needed.
Fast forward almost 20 years later and I see the same problems and questions coming up all the time from new and even long-time patients about how to cope with dystonia and find helpful treatments. It saddened me to see so much suffering going on and people not having helpful resources available to them. Hoping to change this trend and not wanting others to go down the very dark paths I did, I felt I needed to write this book for the betterment of everyone suffering from dystonia, as well as for caregivers and doctors. It was written for more than just the patient.
In the book, I not only share my story, I compiled a lot of strategies (referenced and anecdotal) for dealing with all that dystonia brings, such as pain, anger, fear, depression, anxiety, stress, grief, relationship issues, shame, as well as healthy lifestyle strategies, pain management, how to learn to accept and rebuild, reinventing yourself, dealing with the public and how to talk about dystonia, treatments, tips for dealing with the diagnosis and life changes down the road, effective doctor visits, what to expect at your appointments, medications, the work environment, tips and tricks for doing daily activities more easily, and a lot of patient testimonials to offer different perspectives. Most of these topics cannot be found in other books or in as much detail as I provide. Needless to say, it took several years to write. I put my life on hold to do nothing but work on this book.
Knowing how hard it is to find quality information, I wanted to create a resource that had as much practical information as possible in one place that addressed the physical, emotional, social, vocational, and psychological aspects of this disorder.
Also, when people are suffering with pain and other symptoms of dystonia, it is very difficult to concentrate or devote a lot of time to search for all the information we need to be as healthy as possible, where to turn for help, or even know what information to look for that will help most. This is what I provide in the book. I have been so humbled by the response from people who have read it, as well as it being recognized by the Michael J Fox Foundation.
Matthieu: How did you initially feel when you received the diagnosis? What was the treatment your doctor initially prescribed and did it work in your case?
Tom: I was relieved to get a diagnosis. It gave me direction to find the help I needed. Prior to my diagnosis, I went to many different doctors, none of whom knew what was wrong or how to help. Those who tried to help made my symptoms worse. Without a diagnosis, they were blindly trying anything they thought might “fix me.” Within a few months after my first symptoms, it became so severe that I was homebound. I rolled around all day on my floor because the pain was too severe to sit or stand for more than 10 minutes. I was so frustrated that I stopped all care and researched the internet when I was able to sit long enough. This is when I came across Spasmodic Torticollis/Cervical Dystonia. From the pictures and descriptions, I was convinced this was what I had. I then received the official diagnosis from a neurologist. Below are photos of my dystonia transformation over the past 2 decades.
To answer the second part of your question, the initial treatments for me were oral medications and Botox injections. The oral medications were moderately helpful, but the Botox was unfortunately not helpful. In fact, after some treatments I felt worse. I tried many times with several doctors over a period of 10 years without success. I believe chemodenervation treatments using Botox, Xeomin, Dysport, and Myobloc are wonderful when they work, so just because they did not help me does not mean I don’t support them or people who use them. These medications can do wonderful things, as can so many other treatments and therapies. We should keep our minds open to any and all possibilities. Personally, I have had to create a dystonia/pain lifestyle that involves far too many things to list here. I believe a multi-modal approach is most effective for most people to successfully manage their symptoms.
Since the botulinum neurotoxin therapy was not effective for me, and I am more of a natural person anyway when it comes to my health, I decided to attend the ST Clinic in New Mexico in the United States (www.stclinic.com). This was the foundation for my improvement. Retraining faulty dystonia motor programs via exercise, stretching, massage, nutrition, and other natural means can be very beneficial.
Matthieu: As said above, you’ve been working as a Certified Professional Life Coach. In your view, how important is physical exercise in the treatment of CD? Would you recommend any sports in particular? You have played many different sports yourself. Do you think that the fact you had already been an athletic person prior to the onset of the condition played an important part in allowing you to better control and minimize your symptoms over time?
Tom: These are great questions. I believe that movement is one of the best things for a movement disorder. The important thing is finding the right movements for your particular form of dystonia and your body type. I prefer to use the terms movement and movement therapy instead of exercise, stretching, or sports because movement of any kind is potentially helpful. I also think anyone can benefit from movement therapies. One does not need to be an athlete.
I do not recommend any particular sports. Nor do I discourage people from doing any sport. This is an individual decision based on what I mentioned above about the uniqueness of one’s dystonia and body type. What is most important is the result one gets from engaging in a particular sport/movement to determine if it will increase or decrease their symptoms.
In my case, I do not know if being an athlete prior to developing dystonia helped me control my symptoms by utilizing movement therapy. Maybe, but I know many people who are not athletic that get great results from movement therapies. What I believe to be true for me is that being a former competitive athlete gives me a mental toolbox to battle dystonia and be successful with my approach. It is my competitive, never give up attitude and mindset thanks to playing sports, more than being athletic, that help me cope with dystonia and other pitfalls in life.
Matthieu: In your book, you also write extensively about how important it is for people with dystonia to “calm the mind.” Indeed, relaxing techniques are considered an essential component of the treatment of dystonia. Which relaxing techniques proved the most efficient ones in your case? How often do you perform these techniques?
Tom: I am really glad you asked this question because the mind/body connection is more powerful than we can imagine. Managing the emotional/psychological aspect of dystonia is just as important, if not more so, than physical treatments. This is too often neglected by doctors and patients.
It is important to understand that stress and heightened emotions create an environment in the body that is not conducing to healing. A mind that is not calm, or “at ease,” or one that is full of anxiety. sadness, guilt, frustration, and anger causes muscle tension and pain. Since the main features of dystonia are muscle tension and pain, if we don’t allow our traumatized bodies to rest and use techniques to calm our racing mind, we are probably not going to have much, or as much, success with treatments and therapies because the body is fighting it by pouring out stress hormones that cause chronic inflammation.
When it comes to movement therapies, rest and mental peace are vital because a stressed and tense body cannot perform optimally. In other words, the body will resist our attempt to teach it new movement patterns if the mind is not relaxed. It is when we learn to mentally “let go” that our body is most prone to healing. I often tell people that the best time to stretch and exercise and do other movement therapies is when they are most mentally and physically relaxed. This is when the mind and body are most receptive to retraining faulty movements patterns. Practicing movement therapies when we are anxious and/or more physically symptomatic, will often cause the body to fight back and potentially make our symptoms worse. In my opinion and experience, it needs to be a more natural, flowing, relaxed experience to be effective, rather than trying to “force” dystonia out of the body. For those who do not utilize movement therapies, which is totally fine because we all must find our own unique path, the same holds true for managing emotions and stress. It is vital for all of us.
Many people feel guilty about resting and doing mind calming activities. I was too for a long time. Eventually, I learned that resting and doing what I viewed as “nothing” is essential to my well-being. I discovered that I am much more productive when I give my body and mind the rest it needs, and it clears my mind so I can take on more creative projects. Many of the ideas I had for my book, as well as the current work I do as a coach and writer, came to me when I was away from my office spending time in peace and quiet, usually out in nature. Below is a photo with my book and the hundreds of notes I took whenever a thought came to me.
Therefore, I schedule my day in such a way that I have free time to spend in silence. Regarding how often I practice mind calming/relaxation activities, I feel at my best when I practice daily. Sometimes more than once a day. If we listen to our body, it will tell us what and how much we need.
Some examples of mind calming activities include meditation, breathing practice, tai chi, yoga, qi gong, dance, being out in nature, etc. Anything that helps us feel more grounded, relaxed, and joyful can be a mind calming activity. People sometimes make the mistake of thinking it requires being physically still, such as with meditation. I think anything that brings us peace of mind can be considered meditation, which may or may not involve movement. It is all about being in the moment where we are mindful of our surroundings, body sensations, thoughts, and feelings, and that can be any moment at all while doing any activity.
I recently read an article where it said, “it is important to rest for better productivity. If you don’t schedule time for rest, your body will schedule it for you – and that will not be pleasant rest.” This is so true.
Matthieu: For people with dystonia, it is often an issue to have to face up to other people, to the gaze of others. Was this initially a problem for you? If so, how did you manage to overcome this issue?
Tom: Thankfully, I did not have a problem with this. There were a few times that I felt uncomfortable, but I soon learned that the more I put myself in front of others and talked about dystonia, or just had a conversation about anything no matter what my dystonia was doing and how my body appeared (which often times looked horrible), my fears and worries about being around others went away.
I think it is very important for us to face our dystonia and talk to others about it because being worried about how we look and feel (which is very common for people with dystonia) can worsen our physical symptoms because of the stress created by anxiety. The more we can reduce social anxiety, or anxiety in general, the better we will be for it. This goes back to the mind/body connection I discussed earlier. Worry and anxiety worsen symptoms. It also takes a lot more energy to try and hide something than be ourselves. BUT, we need to accept ourselves in order to be ourselves!
Going back to the previous question about calming the mind, facing up to other people is a helpful tool for teaching the mind to calm itself. It may be difficult at first, but it becomes easier the more we expose ourselves to others. With practice, the less we care what people think and the less self-conscious we become. Facing up to others helps us learn to better accept our condition, which can be a very tough thing to do, but necessary for the healing process. What helps is the realization that we often care MUCH more about how we look and feel than anyone else.
From the beginning, I was very interested in trying to figure out what was wrong with me so I spoke to anyone and everyone who might know how to help. After learning what dystonia was, I was more than happy to talk about it. I wanted the people in my life to know what it was and try to understand what I was going through. I also knew that people were curious what was wrong, so by talking about it, even if I made just a small comment to bring attention to it, I made others feel comfortable because many do not know what to say us.
For people who are not comfortable talking about it, this is often remedied when we start the conversation, rather than wait for others to ask questions or make comments. This way, we can better steer the conversation. Also, when we set the intention to do this, or anything in life, rather than waiting and worrying about someone catching us off guard, it gives us more motivation and confidence. With practice, that confidence grows and the fear and anxiety wither away.
I also feel a responsibility to talk about it because those of us who live with dystonia know the most about it and if we want to increase awareness and reduce the stares and comments from people, we are the ones who need to talk about it. Who else will?
The area where I was uncomfortable was when I gained a lot of weight. What I have not yet shared is that for the first five years of living with dystonia, I was deeply depressed and felt helpless and hopeless, so I medicated with alcohol and had a very poor diet. I was also very sedentary. I gained 150 pounds and did not recognize myself when I looked in the mirror. Having been a former competitive athlete and part owner of a nutrition company, to see myself morbidly obese was very embarrassing. That more than dystonia led to a great deal of shame and isolation. This is because dystonia was not my fault and the weight gain was my fault. Thankfully, I worked very hard and lost all of the weight. I now gladly share pictures of myself when I was obese to try and give hope to others that they can also transform their bodies and lives.
Matthieu: You are also a chronic pain and dystonia awareness advocate. Could you please tell us a little about this?
Tom: Being an advocate to me means sharing and promoting as much information as possible in as many outlets as possible about the nature of living with dystonia and chronic pain. I spend most of my day talking to people one on one, in groups, and during coaching sessions, writing articles (I have been published over 50 times) and a blog, making videos, and doing podcasts and other interviews for the benefit of educating the public and raising awareness for anyone who is suffering with dystonia and chronic pain. I try to be a voice for myself and others who are struggling, especially those suffering who do not know what to say or do. I am also a member of many support groups and volunteer as an administrator for one group that has over close to 8000 members.
Being an advocate is not just about helping other people. It is also about advocating for ourselves by taking charge of our health. When we are educated about our condition and involved in self-care, we take greater responsibility for our condition by making healthy lifestyle choices. Research shows that the more educated and involved patients are in their care, the better their health. Therefore, if we want to be as healthy as possible, we need to advocate for ourselves by taking charge of our physical, emotional, and spiritual health. Our doctors can only do so much. They do not feed us, control how much sleep we get, choose the people in our lives, control our emotions, increase or decrease the stressors in our lives, etc. This is 100% our responsibility.
Matthieu: Tom, thanks so much for taking the time to answer our questions!
Tom: It was my pleasure! Thank you for having me and thank you for all the great work you are doing with your organization! One final note – I want to share a message to anyone facing dystonia or any difficult health condition or other life challenge; you are not alone, hope never dies, and every single day is an opportunity to get better. Obstacles provide us with opportunities to grow and become better people, and every day is an opportunity for us to move closer to the person we want to be. Setbacks in life set us up for comebacks, so please never give up. Don’t be afraid of challenges. They are preparing us for an uncertain future.
Should you like to have more information about Tom, resources for dystonia, and to find a copy of his book (which is also available on Amazon), you can visit Tom Seaman’s website at www.tomseamancoaching.com