Thursday, September 29, 2016

Patient Assistance Programs for Botox, Xeomin, Dysport, and Myobloc

This is just a brief entry to share with you the various programs in place to help people pay for their botulinum neurotoxin injections. These programs help patients with or without medical insurance. Below are links to the different programs for each of the botulinum neurotoxins (Botox, Xeomin, Dysport, Myobloc). Each program is different, but all of them can amount to significant savings if you are eligible.

Xeomin (Merz Pharmaceutical):

Dysport (Ipsen):

Myobloc (Solstice Neurosciences):

Friday, September 16, 2016

You can't fix dystonia with a cast

This title is a relatively poor attempt at a creative way to illustrate how so many people confuse dystonia with temporary ailments like the flu, other short term health issues, injuries, etc. Let's use a broken ankle as an example. In most cases, if you sprain, fracture, or break your ankle, you are put in a cast for 6-8 weeks. Once the cast is taken off, most patients are back to normal within about two weeks after the ankle strengthens from atrophy. I know this firsthand because I broke both my ankles on four occasions throughout my life, not to mention a host of other injuries.

Of course, there are exceptions where people need additional treatments, therapy, and perhaps surgery. However, in most cases, you break your ankle, a cast is put on, and shortly after it is taken off you are back to normal. This is not even remotely close to what life is like with dystonia and other chronic health conditions, but far too many people incorrectly believe they are the same.

When my dystonia began in 2001 (I have cervical dystonia so it affects my neck), I tried many different treatments to see what would help most. After each treatment/therapy, the people in my life thought it would fix or eliminate my dystonia, just like a cast for a broken bone, aspirin for a headache, or a band aid for a cut. They expected my muscles to stop contracting, my pain to disappear, and my neck to be straight rather than the muscles turning it towards my right shoulder. Sure, there were times when I had temporary relief like this, but it never lasted. My oh my were people shocked! Some even blamed me for the treatment not working. Yes, I know... absurd. Some even left my life because they couldn’t grasp the concept of a health condition that didn’t heal. Sad but true.

Here is the 411 about dystonia that needs to be understood. There is no treatment for dystonia that results in permanent healing. Some will argue there is, and there are some who have been healed with some treatments, but it is a rare and unique situation. For most people, healing means a reduction in symptoms or just better symptom management, but these people are still living with symptoms; for some it can be life altering. Unlike a broken ankle that heals, unless there is remission, dystonia will be there in one way or another. You can't put a cast on my neck or give me a massage and expect it to disappear. A massage feels great, as do other therapies I utilize, but it doesn’t fix anything long term. We all wish it were that simple.

What also needs to be understood is that dystonia manifests differently in all of us and a treatment that helps one may not help another. Further, the list of treatments is endless ranging from things like physical therapy to brain surgery, and many people are doing more than one thing to help manage their symptoms. Let me repeat that... MANAGE their symptoms. Treatments do not heal dystonia like an ankle immobilized in a cast heals a break.

There is no cookie cutter treatment so every case should be taken individually, something not done nearly enough by doctors who often use just one modality for every patient. Dystonia has to be managed daily with a variety of treatments and lifestyle changes, no different than people with diabetes, celiac disease, Parkinson's disease, essential tremor, chronic migraines, fibromyalgia, arthritis, etc., have to monitor their health condition on a daily basis to be able to function, and even "functioning" is a relative term when it comes to dystonia.

Please understand that there is no black and white with dystonia. Most people live in that massive grey area in the middle trying to get through the day with whatever treatments and palliative care are at their disposal. Unlike a broken ankle, we can't put a cast on our affected body part for 6-8 weeks, take it off, and move on with our lives. The two are not even in the same ballpark and we who live with dystonia would appreciate it if people understood that there is no cast or bandage or pill for dystonia. We respectfully request that people accept the fact that the treatments we receive are temporary in most cases and do not make dystonia disappear. One day we will have treatments like that, but for now, everything we do is for the purpose of minimizing our symptoms so we can function in our daily lives.

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 Follow him on Twitter @Dystoniabook1 and Instagram

Monday, September 12, 2016

2016 WEGO Health Activist Awards

I am excited to announce I have been nominated for the 2016 WEGO Health Activist Awards! I have actually been nominated for 3 awards! Health Activist Hero, Best Kept Secret, and Rookie of the Year.

am so excited and grateful to all you who have nominated me, and thank you very much for your continued support! We have just entered the endorsement (voting) phase and I would really appreciate it if you would endorse me. If I have ever supported you, made you laugh, or inspired you to keep fighting, please vote for me! Here is a link to my personal nomination page with the following profile:

"For 15 years I have lived with dystonia, a neurological movement disorder. Being involved in support groups has been a big help, which motivates me to pay it forward by doing advocacy work. I write articles, a blog, make educational videos, volunteer as a support group leader for the Dystonia Medical Research Foundation and spread awareness on TV, newspapers & social media. I also wrote a book, Diagnosis Dystonia: Navigating the Journey, which was recognized by the Michael J. Fox Foundation. It provides A-Z strategies for how to live well with dystonia. I also battled morbid obesity by losing 150 lbs. I love helping people work through challenges, which I do as a certified health/life coach."

WEGO Health, a network of +100k patient influencers, has create the awards program to:
  • Recognize patient influencers who have become leaders among leaders
  • Connect patient leaders to each other, across conditions and platforms
  • Give a big “Thank You” to all the leaders impacting their lives
If you know anyone within our community who should have been nominated, there is still time. Make sure to nominate all health leaders today because they all deserve to be celebrated. Thank you!

Thursday, September 1, 2016

Self care tools for relieving pain, stress, & muscle spasms

The products in this blog are for informational purposes only. Thanks to everyone who contributed their ideas! Please consult a physician before using any of these products.The reader accepts full responsibility for the use of these products. 

There are many self care tools/products available to us that can help manage pain, muscle spasms, and other symptoms associated with dystonia and other health conditions. If you are like me, you have tried a bunch of different things to help alleviate your pain and other symptoms. There are a few I have not yet tried, but most of what I share below is part of my arsenal to help manage my symptoms.

Since there are so many things from which to choose and different companies that make similar products, it would be impossible to include every self care tool at our disposal, but I hope this covers a good portion. Please contact me if there are others you feel I should add that would be of benefit to readers. I provide a link to most of the products, but it is probably best to search the internet to find the best prices. Amazon and eBay tend to have the best deals for most.

I do not receive any compensation for the sale of any of these products. I just want people to know what is available to them. Please keep in mind that we all respond differently to these products, so they may or may not be of help. 

Lastly, this blog is intended to share non-pharmaceutical products available to us that we can purchase and use on our own, unlike what we receive from doctors which are often not available without a prescription or hands on assistance. Medical treatments and assisted treatments/therapies are discussed in depth in my book, Diagnosis Dystonia: Navigating the Journey.

Kneading Fingers: Massage machine made by Clark Wellness that has two rotating balls that work on the neck and back. It is designed to duplicate the firm kneading action of a massage therapist. You can find the best prices for this item on Amazon and eBay.


acuBall: The acuBall is designed to provide acupressure and heat to help relax tight muscles, enhance joint movement, stimulate blood flow to oxygenate tissues & flush out built up muscle wastes, and reduce pain. The unique design allows the body to relax while the acupoints and heat stimulate blood flow.

Bodo: Handheld device for trigger points that you can reach by hand. There are many handheld trigger point tools, such as the Jacknobber, that you can use. Find what best suits you. The bodo can be purchased from Bonnie Prudden Myotherapy.

Jacknobber massage tool: The knobs of the four legs of the Jacknobber massage tool can be used in many ways to apply deep pressure to muscular trigger points and tension. The smaller knobs provide more intense pressure while the larger knobs provide a gentler pressure.

Shepherds Crook: The shepherd’s crook is a long, curved, metal, rubber, or heavy plastic hook with rubber on both ends designed for working on hard to reach trigger points. The shepherd’s crook can be purchased from Bonnie Prudden Myotherapy. Similar products are called Back Buddy and Theracane.

Another way to work on trigger points in your back that you can’t reach by hand is to put a tennis ball (or ball of your choice) into a long sock or stocking. Throw it over your shoulder and lean against the wall putting pressure on the area(s) that bother you. You can also lay on a bed or floor with golf balls or marbles under your back to access trigger points. The important thing to remember is to avoid putting pressure on bones. Stay on your muscles.

AccuMassage: The AccuMassage helps release muscle spasms and trigger points in the neck and shoulder, as well as other parts of the body. The unique design of the AccuMassage makes it easy to self massage hard to reach areas.

Relaxamat: The Relaxamat combines the ancient practice of acupressure with modern technology, enabling your body to release endorphins (natural pain killers produced by the brain). It helps the body relax, release tension and stress, and provide relief from back and neck pain.

Foam Rollers: Foam rollers are used for massage, fitness, and stretching. While usually long and cylindrical, they come in many shapes, sizes, and varying textures. When used for self-massage, they help soothe tight, sore areas and speed up muscle recovery. This process of rolling out tight muscles and relieving tension is also called myofascial release. There are endless things one can do with a foam roller, including just laying on it to stretch out the upper body and do balance/core exercises.

PowerStick Massager: The PowerStick is designed to prevent injuries, improve strength, flexibility and endurance, prepare muscles for physical activity, disperse the effects of lactic acid following activity, and accelerate muscle recovery. They come in different sizes and can be used on any part of the body.

OPTP Products (Orthopedic Physical Therapy Products): OPTP provides a variety of orthopedic, physical therapy, rehabilitation, and fitness products. They include products for training and conditioning, core strength, balance, stability, stretching, and resistance, as well as a variety of self-care techniques. Not only does their website contain many helpful tools, it is rich in self-care educational content.

Occipivot: The Occipivot, which concentrates on the occiput (back of the head), can be used to treat tension and stress syndromes which include headaches, Temporomandibular Joint Disorder (TMJ), cervical issues, and tension at the base of the skull.

: For pain, inflammation, spasms, and swelling. It may also relax tremors. 
There are a ton of ice products available that run the gamut from simply putting ice cubes in a bag to far more advanced technology. I like the ice products from Core Products shown below. They come in different sizes for different parts of the body. Search their site for a ton of other great products. A company that makes similar ice products is ElastoGels. Many people like those made by TheraPearl. They have “ice beads” which make them easier to mold to your body than your typical reusable ice gel packs. I recently learned of another reusable ice pack that stays cold for 8 hours. It is called CryoMAX for those interested in checking it out.

Heat: Heat increases blood circulation and the flow of oxygen and nutrients to muscles. This can help remove cell waste and heal damaged cells, decrease muscle spasm, relax tense muscles, relieve pain, and increase range of motion. I find heat to be most beneficial before I do my stretching, get a massage, when I am extra tight and/or sore, and when I have spasms due to cold weather. Hot baths and whirlpools also relax tight muscles. I like the aromatherapy packs made by BodySense, specifically the NeckEase and Trap Pack shown below. Below those images is their entire product line. They have something for practically every part of the body. I like their products because they provide moist, penetrating heat with the added benefit of aromatherapy. There are other companies that make similar products. Just do a search for "aromatherapy packs." Some people make their own packs using rice and spices/herbs that are sewn into a tube sock or other fabric. ThermaCare heat wraps and similar brands, and heating pads are also beneficial.

Far Infrared Sauna: Far infrared waves penetrate deep into our body for a deep heating action which allows for the body to activate the sweat glands. It is thought that far infrared saunas that use this technology are helpful for relieving muscle pain, strengthening the immune system, removing toxins, easing joint pain and stiffness, and reducing stress and fatigue, among other things. This is me using the personal sauna at my acupuncturist's office. This one is made by Relax Saunas. There are other brands available. Do an internet search for "personal far infrared sauna" to learn more. Two of the great features of this product is that you do not need to stay in long to get the desired benefit and it is portable.

Topical Analgesics: Topical analgesics are creams, rubs, sprays, and patches applied to the skin to reduce pain and inflammation, and relax tight muscles. Far too numerous to mention, they include products such as BioFreezeTiger BalmMineral IceSombraArnica, Ancient Minerals Magnesium Lotion, BenGay, Rub A535MediNatura T-ReliefIcy Hot, and Salonpas.

Essential Oils: Essential oils are the compounds found in the various parts of different plants. Without going into great detail, essential oils can be used orally, topically, and aromatically for reducing pain, relaxing tight muscles, and calming the mind. There are many companies that sell them and a variety of ways to use them. Some essential oil companies include: doTerra, Young Living, Edens Garden, Aura Cacia, ScentsyPlant Therapy, Fabulous Frannie, Healing Solutions, Rocky Mountain Oils, Radha BeautyKis Oils, ArOmis, and Ovvio OilsIt might be best to do an internet search for "essential oils" to learn more, as this is a vast topic of discussion.

Epsom Salt: When my dystonia symptoms were at their worst, nightly Epsom salt baths were one of the most helpful things I did for myself. Epsom salt is both inexpensive and effective, and can be purchased from nearly every pharmacy and grocery store. It pulls harmful toxins out of the body and allows magnesium and sulfates to enter the body. Magnesium helps improve muscle and nerve function, reduce inflammation, and improve blood flow and oxygenation throughout the body. Sulfates are necessary building blocks for healthy joints, skin, and nervous tissue. Regular baths with Epsom salt replenishes the body with magnesium and sulfates, helps flush toxins from the body, reduces inflammation, and builds key protein molecules in the tissues and joints. Learn more about the uses and benefits from the Epsom Salt Council. There are many other bath salts that can be used from companies such as Ahava, San Francisco Salt Company, Tub & Scrub Bath Salt Company and SaltWorks, among others. 

Obusforme: The Obusforme Backrest support transforms ordinary chairs into ergonomically correct seating. It puts your spine into a more anatomically correct position to enhance overall posture by supporting proper spinal alignment. There are a variety of styles from which to choose and it is portable, making it easy to use it at home, the office, car, sporting events, etc.

Adjustable Wedge Pillows: Wedge pillows help keep your body supported in a comfortable upright position, allowing maximum circulation while you recline. Products made by Relax the Back provide a 4 piece set, but other companies provide similar wedge pillows.

TENS Unit (Transcutaneous Electrical Nerve Stimulation): Pocket sized, portable, battery-operated device that sends electrical impulses to certain parts of the body to block pain signals. The electrical currents produced are mild, but they can prevent pain messages from being transmitted to the brain and may raise the level of endorphins (natural pain killers produced by the brain). It can also be helpful for increased circulation and healing, increased motion and function, faster recovery from exercise and injury, and reduced muscle spasms. Not everyone benefits from a TENS unit or benefits in the same way. If you had DBS Surgery (Deep Brain Stimulation), a pacemaker, etc., please use extra caution with a TENS unit and most definitely consult with your doctor before using.


Saunders Cervical Traction: The Saunders Cervical Traction Device is designed to provide safe and effective traction (stretching) to the neck region while keeping it in a neutral position.

Gravity TableThe theory behind using a gravity table is that by inverting your body, you are able to unload the bones, joints, and discs in the back and neck. This is thought to create a traction force through the spine. It has been theorized that this form of traction can decrease back, neck, and shoulder pain, among other beneficial things. The table I use is called Teeter Hangups. Shop around to find the best price.

Inversion allows your joints and spine to elongate, creating space between your ligaments and discs. This helps relieve some of the pressure accrued over the course of your daily activity (or inactivity). Proponents of inversion therapy claim that it helps relieve back, shoulder, neck, and joint pain caused by the compressive force of gravity, improves circulation, promotes lymphatic drainage, relieves the discomfort of varicose veins, eases stress on the heart, improves posture by counteracting the downward pull of gravity, revitalizes and tones facial tissue, and enriches the brain and eyes with oxygen rich blood.

Video demonstrating some of my favorite tools:

Emotional Freedom Technique (EFT): Emotional Freedom Technique (EFT), founded by Gary Craig, is a form of acupressure based on the same energy meridians used in traditional acupuncture to treat physical and emotional ailments, but without the use of needles. Instead, simple tapping with the fingertips is used to input energy onto specific meridians on the body.

Tapping is done simultaneously while you think about a specific problem (a traumatic event, an addiction, chronic or acute pain, an illness, etc.) and say positive affirmations. This is thought by practitioners to treat a wide variety of physical and psychological disorders, and has the advantage of being a simple, self-administered form of therapy. Click here to learn more about EFT and watch different EFT videos.

Mindfulness Meditation: A simple definition of mindfulness is, “a practiced skill of non-judgmental awareness and acceptance of our present-moment experience, including all of our unwanted thoughts, feelings, sensations, and urges.” Mindfulness teaches us to accept all of our unwanted internal experiences as a part of life, regardless of whether they are “good” or “bad.” Jon Kabat-Zinn is well known in this field and has some great programs to help people cope with stress, anxiety, pain, and illness. He has a great program for beginners, aptly named, Mindfulness for Beginners. There are many other mindfulness programs, as well as guided muscle relaxation programs, so find what suits you best.

There are so many things we can do to make our daily lives a little more tolerable. It may take trial and error, but never give up looking for ways to bring more comfort to your life. Please contact me with any questions and/or if there are products you would like to see in this blog that I did not mention.

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 Follow him on Twitter @Dystoniabook1 and Instagram