This support group is created by patients for patients in the belief that together we can make a difference in the quality of our lives.

I read this article by Dr. Patrick Hogan in the Dystonia Spasmodic Troticollis ST's News Magazine and contacted Dr. Hogan to ask if we could use this information on our website. This article is the best, most concise guide to living with dystonia that I have ever seen. It is important for everyone to read. Enjoy!

Holistic FORMULA for the Best Dystonia Treatment
By Dr Patrick Hogan Tacoma,
Washington; Puget Sound Neurology

Dystonia/ ST is not who you are as a whole person. Amidst countless well working circuits in your brain, it is but a signal circuit that has become overactive to a group of muscles in your neck. However, unless managed holistically it can overwhelm a life and become the central focus.
Managing your dystonia is like managing an obnoxious house guest who is living in one room but trying to take over your home. It is fortunate if you can lock the door of the room with botulinum toxin treatment until it breaks through the door at three month intervals. However, as with most people with dystonia, the door cannot be completely blocked and you have to find ways of coping with that visitor with additional strategies.
Dystonia is part of your life as a complex person and yet the focus of treatment is often limited medication or surgery rather than by a comprehensive holistic approach that will bring you to greatest happiness in life. Most of the secrets noted below can apply to any disorder as well as to adaptation to just growing older.

10 Ingredients to the Formula for optimal treatment and coping with Dystonia

  1. Physical Exercise- This is listed first because it is of ultimate importance for all dimensions of your life. Many of the diseases that we deal with and aspects of aging that we consider inevitable are disorders of inactivity. The human brain and body are designed to be continually challenged with physical exertion. It has now been proven in overwhelming levels of research that the brain cells ( neurons) and their connections ( synapses) will grow if stimulated by physical exertion and will wither and die if not. This demands taking this exercise as medicine for which I have coined the brand name Doesital ( does- it –all) in some form every day. When the body is given Doesital, the brain receives messages to produce growth factors to include BDNF ( Brain Derived Neurotrophic Factor) that is the miracle grow fertilizer of the brain. Your daily dosage of exercise should be diversified and challenging to give your brain the adequate stimulus to adapt and produce BDNF. This should include strength training with weight or resistance exercise, cervical mobility exercises, balance and core exercise such as Yoga and Pilates , aerobic exercise that gets your heart rate up and fun exercise that puts it all together such as dance. There have been some concerns about the level of aerobic exercise that should be done since that can be stressful and stress can temporarily amplify dystonia symptoms. The key to making exercise not stressful and become enjoyable is to start at a level that can be done easily and graduate that level over months to a more effective program. A year from now your level of exercise will be much higher without excessive stress and your brain, body and mind will be stronger and healthier. For further information and motivation listen to my podcast on STdystonia.org
  2. Diet
    Good nutrition is indispensible for a healthy brain. As Joan Hogan RD as said in her diet for movement disorder lectures “Choosing clean eating is a choice that you have under your control . Fueling your body and brain with real food will reap immense rewards for your long term health and disease prevention.” Choose fresh foods over packages foods. Focus your meals around fruits and vegetable and instead of frying, eat your vegetable steamed or raw. Add as much plant based proteins as possible. For healthy clean eating recipes see: Food4lifecounseling.com
  3. Dietary Supplements
    Supplements are not a replacement for healthy eating. However, we now recognize that certain supplements can further enhance your health, reduce inflammation and promote disease prevention. Research is continually identifying nutrients of promise in neurological conditions. There has been recent debate on the benefits of using nutritional supplements. However, the supplements that have shown the most promise in research for neurological disorders are Omega 3 fatty acids, B12 and Vitamin D. There are many companies that sell these supplements and some are of high quality and others of poor quality. The most important way of assuring that you are using a quality product is to look for the Good Manufacturing Practices (GMP) seal on the product or the web site. In addition, the TGA, ISO, or NSF seals further validate the quality of the product. Working with a Registered Dietician who has knowledge in neurological disorders is the ideal way to determine which supplements are best for you. There are many misperceptions among providers about nutrition and supplements since this information is not routinely taught well and there is a great deal of profiteering among groups promoting supplements. Be cautious about information you hear from misguided providers who scoff at the value of diet and nutritional supplements as well as from those promoting supplements especially if they give promises of a cure or great energy .
  4. Medication
    For many people with dystonia, the mainstay of medical treatment is therapy with one of the four botulinum toxins injected directed into the specifically involved muscles to temper down the excessive activity going to those muscles. Other oral medication treatments and medications to help with pain or the dystonic activity directly. As neurologists we make decisions daily on which of these medical options to utilize. However, relying only on these treatment options will limit their effectiveness unless they are combined with the rest of the ingredients of our holistic formula.
  5. Attitude
    There have been many statements by wise people related to the indispensible ingredient of a healthy positive attitude toward your disorder and life such as: You become what you think; Happiness is a choice; It is not what happens to you but how you deal with it; Embrace each day of life; Expect to increase strength at a time when you are conditioned to expect decline; I am alive, I am awake and I feel great (Howard Theil).
    Your attitude is the only thing you have control of. Having optimism that things will turn out well while not neglecting the steps needed to make them turn out well has been a positive factor for happiness, longevity, and brain health.
    Depression often accompanies dystonia and is related to neurochemical factors in the brain and the stress of living with this disorder. If allowed to be overwhelming, depression can be a force that counterbalances the benefits from the ingredients of our holistic formula. On the other hand, when the other ingredients of the formula are implemented properly, depression can be entirely eliminated like putting out a flame. It is all in the attitude toward life.
  6. Spirituality
    No matter what religious beliefs that you have, it is well recognized by a wide spectrum of authorities on science, religion and philosophy that the power of prayer and peaceful reflection is undeniable. There are often testimonials at meetings of people with dystonia who have found great strength in their faith and connection to their religious community. We know that dystonia activity is amplified by stress and excessive life noise both figuratively and physically. Taking time daily for meditation practice in a tranquil setting away from the noise and stressors of life will have great rewards for your brain health and thus your dystonia control.
  7. Relationships
    Interpersonal relationships nurture the brain to great vitality. Social engagement with those outside oneself enhances the richness of the human experience and is related to longevity and brain health (as long as it is done with responsible behavior.) Even if a person does not have a personal intimate relationship, intimacy can be achieved through close friendships and interacting with groups of people with similar interests such as a church, athletic group or Dystonia support group. Support groups can be very valuable and lead to close friendships as long as the group is structured to provide positive interaction with others with a similar condition.
  8. Play/ fun
    Despite all the work we do with everything discussed here, enjoyment in life and having fun is a key ingredient. Playing is too often considered to be an activity for children that you lose when you grow up. If that is the case, then none of us should completely grow up and should maintain the ability to have fun with playfulness throughout life. Ask yourself what can you do that gives you the sensation of fun. Laughter improves brain oxygen and relieves stress. Exercise may be the best medicine but laughter comes close. Do whatever fits your style whether it is dance, playing with kids or grandkids, or sporting activities to give your brain this key ingredient. Ballroom dancing, line or country dancing , square dancing or just moving to music is one of the best ways of combining the ingredients of social interaction, exercise, play and laughter into one.
  9. Purpose
    The sense of purpose is always on the list of factors necessary for a rewarding life. Being necessary is a driving force for brain health whether it is to an occupation, volunteering activity, family activities, achieving goals of a hobby or helping other people in any way. Helping others and expressing gratitude for being helped is a powerful interaction for our human experience. It is the motivation of looking forward to something happening or perseverance to accomplishing something that drives us to implement each of these other holistic ingredients when our own personal welfare is not an adequate incentive.
  10. Cognitive stimulation
    Although most people make the word connection of brain exercise to thinking exercises, as noted in #1 above, it is physical exercise that produces the greatest benefits for the brain. Never the less, stimulating your brain with the right type of cognitive stimulation that produces a challenge also is important for brain health while avoiding excessive negative cognitive stimulation such as with most passive programming that is on television.
    Stress has harmful effects as we all know on both the body and brain. However, a healthy level of good stress to include pursuing a goal in work or play and planning for family events have been shown to provide good benefits in that the brain is pushed to maintain optimal cognitive functioning. Exposure to good stress helps the brain and body to respond in a less harmful way when it is exposed to bad stress. That is the principle of hormesis.

Making good lifestyle choices entails the essence of the above ingredients of the holistic formula for optimal health and dystonia control. It emphasizes doing what is right for your whole self to include weight control, never letting any destructive tobacco chemicals enter your body, avoiding excessive medication, a keeping alcohol use low and enjoying healthy sexuality.

The healthier your body can be, the healthier your mind can be, the healthier your spirit can be, the better your brain will work and the better your dystonia will be controlled.

Comments to Hoganpsn@aol.com ; WWW.psneurology.com

These tips are from Patrick Hogan, III, MD, DO, Neurologist, Fellowship trained movement disorder specialist. You can contact him at South Puget Sound Neurology, 2201 S. 19th St., Suite 200, Tacoma, WA 98405, Phone 253-284-4488, www.psneurology.com


A support group of the Dystonia Medical Research Foundation and the National Spasmodic Torticollis Association.
With thanks to the Dystonia Medical Research Foundation, the National Spasmodic Torticollis Association, as well as St. Lukes Rehabilitation Institute.