ST’rs have complex physical problems with varying degrees of involvement, so we custom the program to each individual person, according to their own situation and the way their ST manifests. For example, some clients can do almost all the exercises, some only a few; some can do the standing ones standing, others have to do those lying down to have the exercise be helpful and not be counterproductive. Re. the exercises, almost always the side to which your head turns is the "short side" (your muscles are more contracted on that side which pulls the head over and usually pulls that shoulder up.) You need to exercise to stretch both sides of the back (as ST almost always manifests also in the back) and neck with more emphasis on your short side. If you lean one direction and turn the other, you probably have a bilateral shortness and need to work both sides evenly. One of the keys is trying to stand erect, back of the neck flat, chin down, shoulders squared, and your head and neck stacked on top of the trunk of your body, (i.e. a "military brace" position) not jutting out in front, which is so typical with ST'rs. You can see how this feels if you will lie down on the floor on your back, knees up. Now try to touch the floor with the back of your neck. You won't be able to, but try. You'll see that will force your chin way down. Now try to imitate that position standing up or sitting - that's the Military Brace position, and most exercises are done in that position. The chin should never be up with the head reared back. So if you are lifting a weight over your head, you can stand very straight in a military brace position (back of neck flat and chin down, shoulders squared), knees slightly bent and raise the weight over your head and down several times, maintaining the military brace. Think the exercise into the back of your head and neck - i.e. try to feel it there. You can begin with a 5 or 10 lb. bell or whatever is challenging for you. Then apply the same principal to other stretching exercises. The trick is to daily stretch those muscles and get them flexible and of equal length. Work in slow motion and hold the extension, breathing into it.
Then you should be getting some daily massage - maybe from a family member. Sit in a chair sideways so your back is exposed, forearms on your knees, head hanging down, and have the person doing the back rub stand in back of you and use the heel of his hand (with some massage oil or hand cream) or knuckles and begin at where the bra line would be for a woman and move up the muscles on either side of the spine and up into the neck, using as much pressure as is tolerable - to penetrate and stretch. Stay off the spine!! Never pinch the muscles. He can use his thumbs as well or knuckles to work on the muscles in the back, across the shoulders and neck. The central area of irritation with ST appears to be in the muscles in the mid back, the upper shoulders and at the bony ridge at the back of the head, and you'll find you are probably very tender there. Use the knuckles to push up the back of the neck and push up under the bony ridge at the back of the head and hold a few seconds. Because many people don't have someone at home who can massage them daily, we also recommend you buy a Kneading Fingers Machine - they run $219.95 plus shipping (you must use STRC as a referral to get this discounted price. Shipping within the U.S. is $15.00). Best to order by phone: 1-800-748-7172 or visit https://www.clarkenterprises2000.com/knead2000.asp Also available is a 220/240 volt overseas adapter if needed. Sit in a firm recliner or wing back type chair. Put the machine behind your neck at the bony ridge, scoot your bottom forward, and lean hard into the machine, chin down. After a few minutes, lean slightly forward - the machine will slide a bit down your back; then massage that area for a few minutes, let it move a bit further down (as you begin to sit straighter in the chair) and so on until you have done the entire upper back. Don't use it lying down, because your head will want to roll back. This should be done DAILY! As you begin the exercises, it's almost a given that things will get worse for awhile-more spasms and more discomfort - as your body fights back -unfortunately that's predictable - just hang in there, but baby step your way into an exercise program. Be conservative, so that your body can get used to the changes gradually. You eventually adjust. It's a process and takes time - sometimes months for the body to adapt and begin to straighten out. You may have to begin very gently. Don't shock your body.
What you are doing over time in this recovery program at S.T.R.C. is creating a new reality for your body - new muscle memory, new brain pathways, restructuring musculature and postural realignment, so that, eventually, that new reality, or new you, will begin to dominate, forcing the symptoms of S.T. into dormancy, and you can come into what we call a state of ongoing recovery. I personally have not seen a medical professional regarding my S.T. since 1983 and walk in recovery via this program.
Don't sleep on a contour pillow!!! That will make the ST immediately worse. Feather is best as you can mold it, bunch it up. Sleeping on your back is best with the pillow under your head (more than under your neck), so that your chin is down and you're getting a nice passive stretch all night. DON'T sleep on your short side!!! It will make your ST immediately worse. It's OK to use a heating pad, but not for more than 30 minutes or so, as it will weaken the muscles, but for short periods of time it's fine. Because the way we sleep is so important and can effect our necks and our recovery progress, it’s important to, not only sleep on your back, chin tucked, but to sleep on a bed that is helping, not hurting. The Sleep Comfort (number system air) bed and it is a good choice I think for an ST’r since you can regulate the softness/hardness at the touch of a button. http://www.selectcomfort.com I have also discovered that if you are chilly at night, you tend to curl up while sleeping, so you might want to consider a heating blanket or heated mattress pad, so that you will more easily be able to sleep on your back. I personally have returned to my old standard, the full motion heated waterbed. I realize some people don’t like them, but my body loves the gentle motion all night and thrives on a waterbed.
It's not advisable to use a cervical collar (unless you are using it as a holder for an iced gel pack or temporarily to be comfortable while driving, eating out, etc.), as collars will eventually weaken the neck. You can buy gel collars that you can use either hot or cold. Both are helpful - alternate hot and cold and end with cold. The ice packs will actually do more to relieve the pain and calm down the spasms, and I recommend keeping the sore areas iced for long periods of time. The best ice pack I’ve found is the Elasto-Gel Cold Cervical Wrap - I love this product and strongly recommend it! It’s a flexible cold pack that covers the neck, top of shoulders and dips down the back. Put it in the freezer for 2 hours and then enjoy relief from both spasms and pain. Search online for the best price. I also love the Teeter Hang-Ups Inversion (gravity) Table (Model F5000). The best price I’ve found is at http://www.sitincomfort.com This table is safe and easily allows you to hang upside down for a full body traction. Do not leave small children unattended near the table. You should not use this table if you have high blood pressure, glaucoma or are on Artane.
I also recommend long hot baths - it's important to let your body rest and relax. You should avoid like the plague doing anything that causes your head to jut forward or to have your chin up and head rolled back. Contact ST/Dystonia, Inc. 1-888-445-4588 if you want to order an Obusforme. Or order this product on the web at http://www.spasmodictorticollis.org They are wonderful portable chairbacks (get the highback one!) that you can put anywhere. VERY helpful in keeping you erect. Avoid recliners where you lay way back. They will make you worse. However, it took me a year or so to wean myself away from the recliner. These things have to be done in stages. Much better to be down on the floor with your head on a pillow, chin down if you want to rest, and be sure to program many short rest breaks into each day. That is also a good position for reading. (If you wear bifocals, put them on upside down!) Ditto for watching TV - lie on the floor, so you are not tempted to slouch or twist. Try not to cross your legs or twist your body when you sit. You can't possibly do it all right overnight since you have ST - but this is the idea, and you can begin to work toward this. Take it one baby step at a time. We like Shaklee vitamins because they are food based, not chemically based. I'm not a distributor, but you can find one in your area. We give the Shaklee Vitalizer (including the Vita Lea, B, C, E with Selenium) and recommend their Osteomatrix (Calcium/Magnesium formula). Shaklee is by far the best product out there in my opinion. Also, it's very important to avoid sugar, much alcohol (especially red wine, as it tends to be a muscle inflammatory), caffeine and white flour products, junk food and preservatives, and NO sugar substitutes!!! I use granulated fructose available at health food stores in bulk, and that is fairly safe for an ST’r, and granulated Xylitol is also a very good choice. It comes from the bark of trees and vegetable fiber; it comes in granulated form and looks and tastes just like sugar, though is a bit milder. Use it as you would sugar, including for baking. Xylitol is actually good for you, as it fights osteoporosis by building bone density, can prevent ear infections in children, destroys plaque on the teeth and helps prevent tooth decay. Search online for the best price. This product is generally safe for diabetics. Splenda has potential harmful side effects and NO aspartame (it’s a neurological toxin!)! Try to keep your diet as healthy as you can with plenty of raw fruits and veggies and lots of water. As a chiropractic neurologist once noted, if you smoke you cannot recover - period.
Regarding the exercise, about all I could do when I began my own program was to hold a 10 lb. dumb bell and reach over as if to touch my toes and just hang with the head loose and released. And then slowly stand into a military and hang again. I'd do that for awhile and then lie down. Avoid doing things that really increase the pull WHILE you are doing them. The vitamins gave me increased strength, and over the months I was able to move into more vigorous workout and eventually into light weight work at the gym. Actually getting into recovery takes incredible commitment and hard work as you are totally reprogramming the body. The daily massage work is essential, and be positive. If you are saying things like "Oh, I know I'll never improve" - that easily can become a self-fulfilling prophecy. Then pray! I hope this will help. Let me know how you're getting along. We also offer the entire clinic program in 3 formats: our Original 4-day program, our Premier 4-day Program and the At-Home, Long-Distance course. Call us for details and an order form. 1-800-805-9976 or go to
http://www.RecoveryClinic.org (site for long distance course only). Also please visit our main Clinic site at
http://www.STclinic.com
stclinic@comcast.net
God bless you, Abigail Brown, Director S.T.R.C.
Clinic Web site: http://www.STclinic.com Long Distance Course link available at top of home page)
Specific Long Distance Home course Site: http://www.recoveryclinic.org