Hi everyone! Welcome to our 10 days of TIPS for "Living Easier with ST". For most of us we cannot control the external circumstances of our life, but we can control our reactions to them. We hope to help you to do just that, based on one tip a day! This page contains tips which we hope will make it easier for you to live with ST on a daily basis. We may not have all of the answers but if you take these tips seriously, they will definitely help you! But, please remember...

DAY ONE TIP...
Develop a multi-disciplinary approach! This may sound simple and it can be but there are some important points to keep in mind when contacting any source other than your doctor. First, be sure they understand what Spasmodic Torticollis is. Question them INTENSELY. After all, it is your body, heart and, most important, YOUR NECK. There could be many types of practitioners, medical or non-medical, who can help, BUT, please remember that most people don't understand what Spasmodic Torticollis is. Over the next 2 weeks we'll try to alert you to the various forms of "multi-disciplinary" or "alternative" or "complimentary" approaches (now referred to as CAM) you may want to try. You may think none of them are that great; you may be expecting "fireworks" and that, tomorrow, you will feel great. However, it doesn't always work that way. Before you even try a "multi-disciplinary" approach, you have to rid yourself of anger and denial. Besides stress, these two evils drag us down. They can create a "flight of fright" mode which only leads to more anger and denial and causes many anxieties and depression - all things we don't need. We've heard so many stories of anger and denial, even from people who have had ST for many years. People believe denial will take ST away and that they can forget it. Accept the fact you have ST and it will be much easier to live with and to treat. We hope this helps and we wish you good luck because it does take hard work and concentration.

DAY TWO TIP...
So many things become involved, when you get ST. One could be the "NEW SELF". We almost have to" recreate" ourselves, especially from within. "Re-creation" is all about A NEW YOU. In fact, "A NEW AND EXCITING YOU". It's a transformation that, over the long run, you may (will) enjoy. Adversity has a way, over time, of helping to improve one's self - if you allow it to. There's an old saying, "There's a silver lining in every black cloud". Well, to the newly diagnosed ST'r and even to those of us who have had it for a long while, we still may not see it that way. Please give it time, however, and try and look at it as that enemy you want to conquer. By employing some of our tips, you could be helped.

For many of us, when ST first enters our life unannounced and unwanted, we are devastated. All of a sudden it's like another person is in our house - a wicked one at that. Our lives become topsy-turvy, also affecting those close to us, at home and at work. What do we do? Who do we turn to? What is this all about?

We talked about a multi-disciplinary approach in confronting ST. What's meant by that? Lots of things...things that may cost you money, but things that are relatively inexpensive or even free. We would like to list many of the things that may help you but before we do, we would like to point out our disclaimer notice.

The views expressed in this publication are those solely of the authors and do not necessarily reflect the views of ST/Dystonia, nor should their publication be construed as an endorsement by ST/Dystonia of any medical treatment discussed herein. These articles are intended for informational purposes only.

Before getting into the multi-disciplinary aspect, we first want to point out that we recommend you find a really good movement disorder neurologist and that you work hand in hand with him/her. Be sure to ask questions. For instance, if you're being prescribed oral medications, ask what and why that particular med is being prescribed. What is it expected to do? What are its side effects? For example, Artane is one of the most widely prescribed meds but it can have some tough side effects - confusion, sweaty hands, inner anxieties, loss of memory and more. It also is more effective in younger people. If you're in your forties the doctor should advise why this medication is being prescribed for you.

As to Botox, the general rule of thumb is to not have more than 300 units (in fact, the average dosage is 237 units) and to not go back for at least 3 months. Do not have any "booster" injections. It is best to have the Botox injected with an EMG machine. Thus, find out as much as you can from the doctor. Control your situation as much as possible. Further, have your doctor tell you how many units he injected into which muscles and why.

If you go to any other type of medical person - chiropractor, physical therapist, psychiatrist, etc. - be sure they understand what ST is and question them on that. Remember, IT'S YOUR NECK, not theirs.

Tomorrow, we'll talk more about your non-medical options.

LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY THREE TIP...
Over the next few days, we want to suggest all of the things that could re-energize you and make your life a bit easier. We'd like to kick it off with PUBLIC ENEMY NUMBER ONE - STRESS. When you think of it, STRESS plays a big role in everyone's life, even those that don't have ST. When you stop to think about it, your neck is the weakest part of your body and those of us with ST have a double whammy so we have to do two things. Number one is step back and determine what STRESSORS there are in our lives. Maybe it's your job; or your spouse, or parents, children or siblings. How about your finances or your general health or any number of other things? Once you determine what these STRESSORS are then, number two, you have to determine if you want to continue living that way, or if you want to cut them down or cut them out. And with some of them, you may have to eliminate one or two - and make some very hard choices.

For instance, family can be a big, big STRESSOR either from the good side or the bad side. Let's take an example from the good side. Your child/grandchild is active in a sport and needs constant chauffeuring or expects you to be there all the time. You know you want to go but you also know you just can't do it...period! Or you can do it only once in a while. This is that "crunch" where you have to sit down and "talk it out" - try to arrive at an amicable solution. Tell him/her if you can't do it and why. Explain that it doesn't detract from your love for them but that you're in pain or pulling or whatever you feel and ask for their understanding. Above all, do take an interest.

As to the bad STRESS, that can mean many, many things and it may take a lot of thought and bravado to solve, but if you want a better life you have to do it. Examples could include an abusive spouse who's in denial and doesn't believe you or a meddling mother or the in-laws or a boss or fellow workers. These can all cause STRESS to build up within you. What do you do? Talk...talk...talk to them. Try to explain yourself and this disorder. If you belong to a church, enlist the aid of a cleric. It's possible that you may have to walk away from some situations because STRESS, especially over the long term, just builds and builds and builds...and you are the one who suffers. Other than simply walking away from the STRESSORS, there are a number of ideas/options/solutions you can adopt and you will read about them over the next few days.

LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY FOUR TIP...

Stress! We talked about it yesterday. We can either walk away from it or try to do something about it. One great way to do something about it is:

Deep Diaphragmatic Breathing

Too many of us, especially when stress is present in our lives, breathe thorasically (through our chest) which only leads to more stress. It does nothing to slow us down. We have to learn how to relax. Our bodies are tight; our minds are wound up and we can only think of our ST. Relaxation through proper breathing is a must! Buy a book on proper breathing, or search our web site, under the articles tab; there are some great articles on relaxation (see our January, 2001, July, 2003, or April, 2004, issues.) Proper breathing is definitely a big, big way to reduce stress and improve your ST or you can simply do the following exercise:

Lay down on the floor, or your bed, on your back. Place your hand on your stomach and then slowly inhale through your nose but from deep down. As you do this, gently and slowly let your stomach push up while feeling your hand do the same. To start with, count to 4 (slowly). At the count of 4 hold your breath for a second and then exhale through your mouth while pushing down gently and slowly with your hand on your stomach, again to a count of 4.

Through the days to come practice, practice, practice and try to gradually extend the count. As you become better at doing it, gradually increase the air intake to travel from your diaphragm into your chest before exhaling.

This is something you really have to continually practice even when talking with someone else or while doing other things. It's something you can do between bites of food or between sentences or while driving, at a stop light or just anywhere and anytime - but, please remember you have to practice. When you watch actors or singers performing notice their breathing patterns.

The best thing of all that will occur is that you will find yourself more relaxed because of not only the way your breath is being inhaled but also because your mind is now off of your torticollis. Your energy level will increase and your anxiety level will decrease. Try it; you'll be amazed!

LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY FIVE TIP...
We've recommended a multi-disciplinary approach including a couple of ways to deal with stress:

* Walking away from it or, in effect, compromising with it.
* Relaxing with proper breathing.


This next tip is one that is probably the hardest for a person to accept and that is to PUT YOURSELF NUMBER ONE IN LIFE. Yes, everything would virtually rotate around you. You are number one!

Any illness/disorder necessitates that we change our lifestyle. It may not be what we want to do but it may be what we have to do...if we want to succeed and become better. Putting yourself number one, however, doesn't mean you're going to do a big makeover of personality or that you're going to ignore everyone. It means if something is just physically or mentally impossible, then don't do it and, if it does involve others, politely advise them that you can't do it and tell them why. Don't be shy when you have to explain this disorder. Just tell them what it is and how it may limit yourself or even them, on certain occasions. People generally do understand. For those who don't understand forget them because they may be the stressors you don't need.

Here's an example of putting yourself number one. Perhaps you've always done the cooking for Thanksgiving and the holidays and now you just can't anymore. But maybe the kids still want you to because you're a good cook and they like your cooking. You may think, well, it's only a meal but it's much more than that. It's the planning...it's the shopping...it's the cleaning...and then the preparation. When it's all over, they leave and you're alone with the mess and the cleaning up. These are all stressors and can lead to more exacerbated symptoms.

Simply advise them that you can't do it anymore but you would be glad to help and you will bring a dish or two to someone else's home. Put yourself number one. And be sure to tell them in a positive manner. Above all, don't just walk away from an event like our example. Instead, show interest in it and some involvement if you can.

Another story that comes to mind is that of a woman named Betty. She's around 50, has a full-time job, is married a second time to a man who's not home much and doesn't understand (or want to understand) ST. In addition, she baby sits every day, after work for her daughter's young son. She and her husband never do anything or, go out together.

Can you see the stress involved here? Betty has to learn, hard as that may be, to put herself number one. Yes, it will be difficult but the longer this goes on the worse her symptoms will get. Oh yes, Botox no longer works. Any wonder why?

Ask any doctor and they will tell you to put yourself number one. We're just not able to do all of the things we once did! It doesn't mean we never will but through practicing all these tips it's amazing the turn-around your life can and will have.

LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY SIX TIP...
Our minds are very complex "beings" of themselves and, as you come down with ST, you will probably notice a big change within yourself as to what and how you think about yourself. For many years we took ourselves for granted. Sure, we had some quirks about our looks. Maybe we put on some extra weight or, maybe, our hair was thinning out or turning gray. Mundane things like that.

But, now with torticollis, WHAM! It's like we've truly been blindsided. Our heads are being pulled in various directions. We're no longer that same person...or so we think. It's almost an automatic reaction that the pulling and the pain and the pressure, and whatever has remade us into an embarrassing sight and, it seems to come on almost overnight. Many of us will retreat to the sanctuary of our home and stay there. We know of a woman who literally imposed a "house arrest" on herself for 12 years. She stayed inside for all of those 12 years because she was embarrassed and it was in her mind to escape from life, but, more so, from reality.

Just like that woman, there are so many of us who let our minds control us and, with this disorder, we usually think negative thoughts. Thus, our Day Five tip is to replace those negative thoughts with positive ones. This might seem like a never-ending difficult process. But...

YOU CAN DO IT IF YOU REALLY WANT TO

These are all key words but the last 5 are very, very important:

IF YOU REALLY WANT TO

Many of us have had to change our lives. Maybe it was to give up smoking. If so, and if we did do it, it was because WE REALLY WANTED TO.

We had to re-program our thinking. We had to change our mind. There's a woman named Barb who had much pain with her torticollis. After listening to a motivational speaker she decided to experiment. Each and every day she would lock herself in a favorite room of her home and repeat over and over and over again, all day long, "My pain is gone". But she would not just say the words loosely; rather, she would concentrate on them, and literally, convince her mind that her pain was gone. There were days when she would do this for 8 hours, maybe 6 the next, and then 12 and so forth. You know what? After 18 days her pain was gone and it still is 15 years later. MIND OVER MATTER...so possible...so important...and so necessary!

Many of us in this world possess negative thoughts and we get them starting in our childhood. When we were young we heard, "No, don't do that...you can't do that". And, as we grew older, we constantly heard negatives. It's no wonder that when we get torticollis our minds are ripe with negatives. Torticollis comes along and we automatically believe we look foolish and have lost our worth.

But, have we? What has changed besides our looks? Have our feelings changed? Has our intelligence changed? NO! NO! AND NO! We are still that same great person we always have been. Yes, our looks have changed - somewhat - and it's really surprising when you think of it, because most of us do not look bad at all. At least, not as bad as we think! The pain we have makes us think that way.

Take a $20 bill. Its value is $20, right? Now take that same bill and crumple it a little bit in your hand. Its value is still $20 although it's a little crumpled-looking. You can even crumple it some more and then throw it on the floor and step on it and mash it and do all kinds of things to it; yet, its value is still $20. As with us, even though we may not look exactly the same we are still that same person. WE HAVE NOT LOST OUR VALUE.

Thus, what we have to learn how to do is retrain our mind. When a negative thought enters into it, immediately replace it with a positive one, and keep doing it and doing it and doing it. Just as with the breathing, or putting yourself number one or with anything else, we have to practice, practice, practice. Rome wasn't built in a day and repetition is the best teacher.

Here are some good positive affirmations to repeat, continuously:

I'm alive, I'm awake and I feel great!
I am a fantastic person!
I am a great person!
I am a very good-looking person!
I will choose the outcome I desire!
I will feel sensational!
I will be a winner!

You can do it! Believe in yourself!


LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY SEVEN TIP...
Years ago Norman Cousins, a famous author, was lying in his hospital bed having been told that he had a terminal physical condition.

What's a person to do? Take it as Gospel or fight back? Norman fought back. He told his wife that he would not see any visitors who were maudlin; he ordered her not to accept any plants or get well cards; he would watch only those TV shows that had comedy, nothing sad or gruesome. Norman wanted only humorous stories from his visitors. Instead of plants, he asked them to bring him books of joy, of jokes, of funny instances. Instead of being terminal, and dying shortly after, he lived another 30 years. He devoted his life to humor. In fact, a great book to read is his "Healing Power of Laughter".

It's amazing what laughter can do for you. It releases endorphins, the body's own way of healing itself. Have you ever had a good old fashioned "belly" laugh, the kind that reverberates throughout your whole body? The kind that you laugh so hard you actually cry? Can you remember seeing a really good comedian or comedy show where you laughed continuously? Remember how relaxed and refreshed you were afterwards? And those thoughts don't just disappear. Sometimes they lasted for days, or weeks, or months, sometimes longer.

The comedy team of Abbott and Costello did their immortal "Who's on First" for years and to this day it is one of the all-time comedy favorites. The Seinfeld Show, if you watch reruns, in their own way, do take offs on it. And they're funny. Maybe, when people say, "The Good Old Days", they mean the amount of humor there used to be in the world instead of all the bad news the papers and TV give us these days.

Think of what a smile or a chuckle or a good laugh does for you. It makes you feel light-hearted, doesn't it? Think of the person/s you may be with. Are they grouchy or happy and then think of how you feel depending on their mood/s.

Rodney Dangerfield said if he wanted to feel skinny he would surround himself with all fat people. Similarly, if you surrounded yourself with all somber, stone-faced, negative people, what would you feel like? Now, surround yourself with happy people who look at life with a smile on their face. Just think how much better you'll feel.

Almost every larger town or city has a library and they can furnish you with a wealth of stories-all comical. Your cable TV generally has a station or two with comedies.

It may be necessary to get rid of your newspaper or not listen to the news on your radio or TV. Remember; surround yourself with people who are happy or with programs of comedy. You will start feeling better. And, how about these for a few laughs?

TOP TEN WAYS TO HANDLE STRESS
10. Go shopping. Buy everything. Sweat in it. Return it the next day.
9. As often as possible, skip rather than walk.
8. Reply to everything someone says, "That's what you think".
7. Pop some popcorn without putting on the lid.
6. Make a list of things to do that you've already done.
5. Stare at people through the tines of a fork and pretend they're in jail.
4. When someone says, "Have a nice day" tell them you have other plans.
3. Jam 30 tiny marshmallows up your nose and try to sneeze them out.
2. Lie on your back, eating celery, using your navel as a salt dipper.

And, the number 1 way to handle stress...
1. Dance naked in front of your pets.
Did the laughs reading these make you feel better? Everything, everything helps!


LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY EIGHT TIP...
Worry is a big, big thing that all of us have, especially in the beginning. We've just been introduced to something which is both hard to pronounce and harder yet to spell - Spasmodic Torticollis. In fact, there are many in the medical field, as many of us have found out, that don't know about ST.

It's normal to have questions about our future, but sometimes, the worry can be self-defeating. What's going to happen to me? Will the pain go away? No one understands me! So much pain, is there anything that can be done? Oh, the pain is bad! Help! We may worry ourselves into depression or panic attacks OR MORE SEVERE SYMPTOMS...symptoms that can be "mentally" induced. What can you do? You've taken a major first step by joining our association. We pride ourselves on all the information that we can provide you. Knowledge is one sure way to defeat worry. Rather than worry about the future, think only of today and do something about it today. We have no control over tomorrow. Life takes its own course.

So, for today, do what you can. Turn on your computer, go to the web site that advises you of dystonia or torticollis. We believe we have a really fine web site at spasmodictorticollis.org. In fact, as a member, with your password and user name, you can go into our archives section and read every single newsmagazine we've published since January, 1999. THAT'S A WEALTH OF KNOWLEDGE. If you want, you can become a member of our private for-members-only e-mail directory. Correspond with others that have this. You won't feel alone anymore and you may even be able to socialize with them if they live close enough to you.

We received an interesting saying in a recent e-mail. It says, "If God brings you to it, He will bring you through it." Think of it. If you have a POWER such as God on your side, that's a tremendous partner. In fact, it's been documented by many scholars that prayer does actually work for those who do it or for those who are prayed for.

Thus, turn away from those stubborn inwardly thoughts and worries and turn yourself over to God or whoever your higher power is. Letting your worries go just lifts a great big burden off your back and turns your attention back to where it should be focused - on a brand new positive YOU! Doesn't that feel GREAT?

LIFE BEGINS ON THE DAY YOU WANT IT TO BEGIN!

DAY NINE TIP...
This may come across as something "off the wall" and well it may be. It's more or less a "nuts and bolts" type of thing. Remember the old time hardware store where if you needed that particular washer or nut made "twenty thousand" years ago you could go there and they would dig around in a box and, after a minute or two or three, there it would be.
Well, we have a box somewhat similar to that, only these are ideas/solutions/options that may help you. Take your choice:

1. Learn something new - take up dancing (people with ST say this helps tremendously), play chess, take up an instrument, e.g., the harmonica where your hands and the harmonica would be holding your head in place.
2. Exercise - Walk if you can and, if it's difficult, wrap a long towel around your neck and hold each end tight with your hands. Try to do some gardening if you're into that. It's a great hobby that will give you satisfaction. And when that sense of satisfaction comes over you it's a tremendous feeling. Do Yoga exercises, in fact, go to a Yoga class. These exercises definitely help and you will meet other people.
3. Nutrition and weight loss - This is so much needed because so many of us put on weight and that slows us down and makes us lethargic and doesn't help our attitudes. Slimming down definitely makes us look better and gives us more energy. Try staying away from the "whites" - flour and sugar and definitely avoid caffeine, nicotine and the soft drinks even if they are caffeine-free. Drink plenty of water. It gives you energy and cleanses your system.
4. Become involved any place you can. Do something that takes your mind off of ST. Join a club, and, if at first you feel out of place or embarrassed because of your ST, just explain to the people what you have. We've got brochures if you need them. You might be surprised at how well you will be received. We know of one case concerning an ST'r moving into a strange town and not knowing anybody and how he became involved with helping the town people to improve their downtown. There were many, many meetings plus other things and nobody ever asked about his neck. He was accepted...and his torticollis improved. It can happen with you also.
5. Get out of the house even if you walk to the park and sit on a bench and just meditate. The fresh air will do you good and your stress level will be reduced.
6. Look around your house. Is it functional and are the colors bright and cheery? There's an old Chinese art called feng shui which literally means proper and functional placement and organization of furniture. Paint your walls light, bright colors, buy some flowers every once in a while, turn on some nice music of your choice to relax by. Get a book if you're a reader and turn off the TV, especially the news and gloomy movies. Stop the newspaper. Put up signs around your house reminding you to "smile" or "relax" or whatever you need to help you. During the day and, just before bed, fill your bath tub and soak in a nice hot bath.

There you have it - a "toolbox full" of ideas to help you get through the day!

We can all make it through everyday IF WE WANT TO. And we can make it a little bit easier to live every day when... and IF WE WANT TO.

DAY TEN TIP...
A couple of very enlightening e-mails were sent to us recently, both concerning the role stress plays in our life and what methods ST'rs have employed to overcome it.

The first report states:

A sample of 72 patients with adult onset torticollis were asked to complete a checklist to indicate how a list of situations and activities affected the severity of their torticollis. Stress and self-consciousness were reported as aggravating factors by more than 80% of the sample, whereas walking, fatigue, and carrying objects were noted as exacerbators by over 70% of the patients. For more than 40% of the sample, torticollis improved in the supine position, by relaxation, sleep, and lying on the side. However, the last four factors also worsened the head deviation in 16% to 25% of the patients. Use of a "geste antagoniste"(holding your head with your hand) to maintain the head in the body midline, was reported by 64 (88.9%) of the patients, which was still effective in correcting head position in 47%. The worsening of torticollis with peripheral motor activity (walking, running, writing) or its improvement with changes in body posture or with the geste antagoniste is best viewed in terms of alterations of peripheral feedback or corollary discharge provoked by the motor output or command.

The report advises the ameliorating or aggravating factors involved. Just some of the actual "damage" and the extent are shown below:

Factor	% worst	% unchanged	% better
Stress	85	14	0
Self-consciousness	84	13	3
Walking	74	18	7
Fatigue	74	23	8
Carrying objects	73	22	8
Writing	67	25	4
Running	62	19	19
Social situations	58	31	10
Distraction	16	45	39

These are just some, but very interesting, especially the distraction factor.
The other report we received concerned summation percentages of some of the alternative/complimentary approaches we've suggested. One hundred-eighty dystonia patients from the German Dystonia Society, when asked what helped them said:

Breathing therapy 62%
Feldenkrais Method 55%
*Massages 44%
*Relaxation techniques 43%

*We don't know what kind of massages or relaxation techniques were used. As far as massages most will feel good but their effects last only for an hour or so.

We would like to briefly summarize what we have given you in the way of this, hoping it will make ST easier to live with. Many of these tips were garnered from suggestions, reports read and from listening to others during the years.

Things change. People change. Our lives change. The only thing permanent in life is change. Your life with ST has changed you but it's not over. It's only beginning. It's the dawn of a new era. It's the first day of the rest of your life. After the acceptance of ST, which is your most important first step, you will have other options leading you down the path towards overcoming ST. Your life definitely will be different with ST. Always remember though, that you will still be able to live a full life albeit in a different fashion.

A. You will have to learn what situations will be different for you and try to avoid them. For example, instead of going shopping at the peak hours, go when the crowds are way less. Don't think of these types of things as a defeat, but rather, as a change, a change we talked about. STRESS PLAYS A HUGE ROLE IN OUR LIVES. IT EXACERBATES THE SITUATION OF ST.

B. Those fears that are faced and/or challenged lead to a positive transformation in attitudes. You will find a surge of new-found self-worth; of being in control; of having a much greater inner strength. The stronger your sense of self-worth, the more confidence you will have in yourself.

C. Learn to live LIFE to the fullest. Commit yourself to it. As you go about your daily duties, smile, hum to yourself, think pleasant and happy thoughts, put humor in your life - laugh - a lot and do things that will be positive and relaxing.

D. Above all, be patient with yourself. Don't give up easily. Rome wasn't built in a day. Changes take practice - lots of it. No one ever got anywhere without practice and without giving themselves time. The person who gets ahead is not necessarily the smartest person; rather, it's the person who practices and practices. Repetition is the best teacher.

E. And, above all, LOVE yourself. ST cannot change that. Love is the greatest commodity we have. Love yourself and others and give of yourself to others. Get involved with others; help others; do things for others. It will take your mind away from yours. The worst thing you can do is dwell on yourself.

F. Finally, from all of us at ST/Dystonia, GOOD LUCK.

Should you have any ideas or tips please let us know so we can pass them on to others. We're all in this together. Meanwhile, please remember that all ST'rs are the greatest people in the world. Winston Churchill had a saying:

"Never, never, never, never, never give up!"