Stupid! Stupid! Stupid me!

Last night I didn't sleep so well. Not because of dystonia, I just had a bad night.

It happens.

BUT this lack of sleep made me a bit twitchy this morning (the medical term of probably something like 'spasmodic tremorts'.)

So - very stupidly - I had a huge cup of coffee to wake me up.

Stupid me!

Within about 20 minutes I had head and hand tremors, which, as I spent most of the day in a cafe, just made things worse. My balance was bad too. In vain did I try to minimise the effects. I ate a lot hoping to dull the caffeine and also drank a lot of camomile and peppermint tea.

All that did was...well, you can guess.

Now, finally, after 7 hours, the effects seem to have worn off.

But I must never ever forget the triggers!

Reducing stress

1. Keep your bedroom pitch black when you sleep. When you remove all light stimulus (even from a clock or nightlight,) you get better REM sleep which leaves you feeling more rested. If you can’t make your room dark, wear an eye mask.
2. Drink a glass of lemon water as soon as you wake up. This helps the body alkalize, helping everything from digestion to immune function.
3. Do some form of morning meditation or prayer. This will actually help you keep your thoughts clear during the day and you will get better rest later that night.
4. Eat protein for breakfast. Eggs in the morning, for example, will give you more sustained energy than that bagel, muffin or croissant. It really doesn’t take too long to scramble an egg and the concerns about eggs and cholesterol are disproven.
5. Move your body mid-day. If you can’t get a workout in, run up the stairs a few times, do ten pushups or a couple downward-dogs (it’s a yoga move!) or a few jumping jacks. Movement is life. If you’re not moving, you’re degenerating. Sitting at a computer all day (or in a car commuting) zaps your energy. Find a way to move!
6. Get your laptop computer set up ergonomically. This might mean buying a separate keyboard and mouse so when you type your elbows can stay close to your body. Set the computer on a stand so that the screen is level with your eyes. This helps with elbow pain, neck strain and overall energy.
7. Cut the chemical junk out of your diet. Stay away from processed sugars and flours. These empty calories often just get wrapped in mucous in your body and stored as fat. If you don’t know what the ingredient is on the label (or can’t pronounce it,) then it’s better to just not eat it.
8. Learn to prepare greens. Dark leafy greens like kale and chard are some of the most energy producing nutrient-rich foods you can eat. Make them a regular part of your diet.
9. Keep your nerve system clear. A healthy spine and nerve system keeps the messages between your brain and body from being disrupted. Regular wellness chiropractic is a great tool for keeping energy high and the body healthy.
10. Go to bed on time. Getting to sleep early (by 10:30pm at the latest) maximizes the healing quality of sleep. Sleeping from 10pm to 5am for example, will yield more healing and energy than going to bed past midnight and sleeping until noon. Going to bed early and getting up early is a smart way to efficiently create health.

Let's expand the list!

  1. Get up 15 minutes earlier
  2. Prepare for the morning the night before
  3. Avoid tight fitting clothes
  4. Avoid relying on chemical aids
  5. Set appointments ahead
  6. Don't rely on your memory ... write it down
  7. Practice preventive maintenance
  8. Make duplicate keys
  9. Say "no" more often
  10. Set priorities in your life
  11. Avoid negative people
  12. Use time wisely
  13. Simplify meal times
  14. Always make copies of important papers
  15. Anticipate your needs
  16. Repair anything that doesn't work properly
  17. Ask for help with the jobs you dislike
  18. Break large tasks into bite size portions
  19. Look at problems as challenges
  20. Look at challenges differently
  21. Unclutter your life
  22. Smile
  23. Be prepared for rain
  24. Tickle a baby
  25. Pet a friendly dog/cat
  26. Don't know all the answers
  27. Look for a silver lining
  28. Say something nice to someone
  29. Teach a kid to fly a kite
  30. Walk in the rain
  31. Schedule play time into every day
  32. Take a bubble bath
  33. Be aware of the decisions you make
  34. Believe in yourself
  35. Stop saying negative things to yourself
  36. Visualize yourself winning
  37. Develop your sense of humor
  38. Stop thinking tomorrow will be a better today
  39. Have goals for yourself
  40. Dance a jig
  41. Say "hello" to a stranger
  42. Ask a friend for a hug
  43. Look up at the stars
  44. Practice breathing slowly
  45. Learn to whistle a tune
  46. Read a poem
  47. Listen to a symphony
  48. Watch a ballet
  49. Read a story curled up in bed
  50. Do a brand new thing
  51. Stop a bad habit
  52. Buy yourself a flower
  53. Take time to small the flowers
  54. Find support from others
  55. Ask someone to be your "vent-partner"
  56. Do it today
  57. Work at being cheerful and optimistic
  58. Put safety first
  59. Do everything in moderation
  60. Pay attention to your appearance
  61. Strive for Excellence NOT perfection
  62. Stretch your limits a little each day
  63. Look at a work of art
  64. Hum a jingle
  65. Maintain your weight
  66. Plant a tree
  67. Feed the birds
  68. Practice grace under pressure
  69. Stand up and stretch
  70. Always have a plan "B"
  71. Learn a new doodle
  72. Memorize a joke
  73. Be responsible for your feelings
  74. Learn to meet your own needs
  75. Become a better listener
  76. Know your limitations and let others know them, too
  77. Tell someone to have a good day in pig Latin
  78. Throw a paper airplane
  79. Exercise every day
  80. Learn the words to a new song
  81. Get to work early
  82. Clean out one closet
  83. Play patty cake with a toddler
  84. Go on a picnic
  85. Take a different route to work
  86. Leave work early (with permission)
  87. Put air freshener in your car
  88. Watch a movie and eat popcorn
  89. Write a note to a far away friend
  90. Go to a ball game and scream
  91. Cook a meal and eat it by candlelight
  92. Recognize the importance of unconditional love
  93. Remember that stress is an attitude
  94. Keep a journal
  95. Practice a monster smile
  96. Remember you always have options
  97. Have a support network of people, places and things
  98. Quit trying to fix other people
  99. Get enough sleep
  100. Talk less and listen more
  101. Freely praise other people 
Sites used for the above....

This is all so relevant because (just three extracts out of hundreds...)

"Has anyone had a flare up with cervical dystonia when under great stress. Just had a family member die and the dystonia really flared during the funeral. "

"Dystonia can occur as a result of emotional difficulties or due to a stress reaction."

"The initial symptoms can be very mild and may be noticeable only after prolonged exertion, stress, or fatigue. Dystonias often progress through various stages. Initially, dystonic movements are intermittent and appear only during voluntary movements or stress. Later, individuals may show dystonic postures and movements while walking and ultimately even while they are relaxed. Dystonic motions may lead to permanent physical deformities by causing tendons to shorten."

But can Alexander Technique HELP those with dystonia?

In another section of this blog there is a post about the Alexander Technique.

But what do others say about the use of the Alexander Technique and dystonia?

It is reasonable to conclude from Annie's post that Alexander Technique (AT) helped. She writes:

"Annie: Age 27
Spasmodic Torticollis
Treatments: Klonopin, Ativan, Lyrica, Botox (every three months, but last treatment did nothing), acupuncture, Alexander Technique.
Years Diagnosed: 1. I was diagnosed almost exactly one year ago, November 2008, I was lucky that my symptoms only started in October 2008.

So far, I've seen about a 70% improvement in my range of motion, but the pain has worsened"

A guitarist with focal dystonia writes:

"As things stand I’m partially recovered. I took Alexander Technique lessons for three years and found them a great help. I no longer take lessons but continue to apply the principles"

After watching this video:

"I have had dystonia for over15 years so can really relate. My friend is with me and I showed her your video and it helped her understand..I have found Alexander Technique helped me a lot!"

"I remember him mentioning that he has Focal Dystonia. He said he has been working with an Alexander Technique teacher and that it had helped him continue playing."

What about research? 

Objective: To determine whether the Alexander Technique, alongside normal treatment, is of benefit to people disabled by idiopathic Parkinson's disease. 
Design: A randomized controlled trial with three groups, one receiving lessons in the Alexander Technique, another receiving massage and one with no additional intervention. Measures were taken pre and post-intervention, and at follow-up, six months later

Results: The Alexander Technique group improved compared with the no additional intervention group, pre-intervention to post-intervention

Conclusions: There is evidence that lessons in the Alexander Technique are likely to lead to sustained benefit for people with Parkinson's disease

Spasmodic torticollis/cervical dystonia certainly gives you a lot of pain. This site tells us:

"The Alexander technique as a way of moving and thinking that eliminates the bad posture and movement habits that can lead to neck and shoulder pain. The Alexander technique teaches you to be aware of the sources of pain and the natural compression of muscles that occurs as the body tries to eliminate that pain. It emphasizes economy in movement to prevent jarring and straining actions, and body alignment to minimize the muscular strain that comes from holding the body in an unnatural position. Alexander technique lessons are low-impact and involve gentle hands-on instruction that helps you to release muscular tension and redevelop your natural poise."

This torticollis site says:

"A good posture may help. Check that your sitting position at work or at the computer is not poor (that is, not with your head flexed forward with a stooped back). Sit upright. Yoga, pilates, and the Alexander technique all improve neck posture, but their value in treating neck pain is uncertain."

So - what next?

Having Alexander Technique can be expensive!

The first thing you should/could do is read up about it. Learn what it involves. Try starting here.... 
You could read about it and/or watch dvds...

If you're in the UK here is how to find a teacher.

Here is how to CHOOSE a teacher.

Other Links:
You could try emailing this person who has experience with clients who have dystonia - but I am sure other teachers do have as well...

So - what does the above tell you?

1. According to some people with dystonia (especially cervical dystonia) there is a high chance the Alexander Technique will help you.

2. You can learn about the Alexander Technique through dvds and books

3. You can find - via the links - Alexander Technique teachers in the UK - and also you can read HOW to select one.

4. Notice also that teachers often reduce their rates for those on benefits etc.

A message from Luke Harley

Thanks for visiting this page.
I am running the Brighton Marathon on the 10th April and the London Marathon on the 17th.
I am running for the Dystonia Society. There is very little known about the condition of Dystonia and you may not have heard about it before.
Over 70,000 people are currently living with Dystonia in the UK.
Dystonia is a condition  that causes involuntary and uncontrollable muscle spasms. It can force the body into abnormal, painful, movements and postures. 
Those affected with Dystonia are affected every day.
Treatment is sporadic in effectiveness and sometimes does not work at all. Treatment is only temporary, the condition is incurable.  
There is no known cause, no known cure, no given time frames & anybody can be suddenly affected whatever their age, background, lifestyle. 
The Dystonia Society aims to ensure that everyone affected has access to the most appropriate treatment, support and information they need to achieve the best possible quality of life whilst affected with this condition.  
Please give generously whatever you can afford to help.
Please also visit the websites and find out more about this often misdiagnosed condition.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.

This is Luke's Justgiving page.

A True Story About the Healing of Dystonia

I was prompted to write this blog entry when I read a post by asburyparkangel

"According to my research, Dystonias are caused by toxins, (which include pesticides, carbon monoxide, anti-histamines, auto exhaust, chemicals in household products, etc). I worked with airplane glue and spray paint when I was in my twenties and never imagined that taking Chlor Trimetron allergy tablets as a yong woman would cause this disorder. I also had a mercury filling left in my mouth, ( from my foster-child years). Mercury is HIGHLY toxic and cause terrible damage to the body. Also check for LYME which is the GREAT imitator that imitates Lupus and a host of other ailments. Hair analysis are excellent to detect heavy metal. Mainstream doctors will not look into these procedure, but you life depends on it. Oral chelation and detoxifying through FAR saunas is crucial to rid the body of accumulated poisons. “DETOX or DIE” by Doctor Sherry Rogers is crucial reading to educate yourself about body poison load.

.NUTRA-Sweet & Splenda are highly toxic as well as high-fructose corn syrup in sodas & snacks. EDUCATE yourself. You’ll also have to eat only organic foods and pure spring and distilled water. Your whole lifestyle will have to be OVERHAULED. Do it of DIE! I pray you will profile and have divine health with this info I’ve applied to my life. God bless you!

This reminded me of a book review 5 years ago:

By John J. Heney
ISBN 1-894263-56-1

Collapsing in the shower early one morning in 1991, Ottawa journalist John Heney found himself unable to control his hands or legs, suddenly going into full-body spasms which would mount to dozens of these attacks per day. Within weeks he would find himself without work, direction or hope as the damage in his nervous system took hold.

Misdiagnosis, malpractice and miscommunication would mean it would be up to him to discover what could be done about this baffling disorder, and how he could regain purpose, an income and personal independence while being left, as one doctor put it, with a "hideous and horrible way to have to live."

The Thunder Within dares to challenge us about the way our society deals with healing, and how we often forget the value of teamwork, respect and joy in daily living. Deemed to have done "more for himself than the entire medical profession," Heney turned his background into a source of information, insight and teaching as he began to share with all manner of groups about the physics and spirit behind thought, intent, abilities, hope and inspiration.

Hilarious at times, uplifting in its recommendations and candid in its revelations, The Thunder Within is being used in business instruction, in Scouting, and by doctors, patients, therapists, families and friends of the ill, and by Canada’s Department of National Defence. It has been featured at a Conference Board of Canada national seminar.

Why? The Thunder Within touches us in places we know are there but which we often dare not speak of. The book reveals, by example, how much more can be found within each of us exactly where we are, no matter how small or large our role in life.

The experience that made John Heney the "spiritual mechanic" by showing people the principles of fun, ease and joy in learning is now spreading its influence worldwide, and can be yours as a spectator, in a journey that is transforming the workplace, the role of medicine, and how we treat ourselves and others.
"Persons in health care practice and policy-making, those suffering serious illness and disabilities, scientists concerned with matters of energy, parapsychologists and spiritual seekers can benefit from reading this exceptional book."

L. Richard Batzler, Ph.D., Past President

Spiritual Frontiers Fellowship International 

The book?

The Thunder WithinThe Thunder Within” is John’s autobiographical description of his journey through the debilitating effects of what happened when his legacy of cerebral palsy suddenly collapsed to include the neurological and movement challenges of dystonia, ataxia and aphasia. ISBN: 1-894263-56-1

"Persons in health care practice and policy-making, those suffering serious illness and disabilities, scientists concerned with matters of energy, parapsychologists and spiritual seekers can benefit from reading this exceptional book."
~ L. Richard Batzler, PhD
"What a great book! Couldn't put it down last night, read until 12:30. The darn book wouldn't put me to sleep. Too interesting. I've read half of it already." ~ A reader writes in about The Thunder Within

Twitter and Dystonia

Famous people with dystonia can and should be followed like mad...They should be bombarded with emails from cme out as an entire group.. not piece by piece...

Here's a list from the c4d site :

The following is a listing of artists/activitists with various forms of dystonia :

Billy Mclaughlin- Focal dystonia ( Music )

Glen Estrin - Muscians dystonia
Leon Fleischer -focal dystonia ( Music )
Debra Freidman - dystonia ( Music )
Jason Solomon - focal dystonia ( Music )
Scott Adams ( aka Dilbert ) Focal dystonia
Diane Rehm ( NPR Host ) Dysphonia
Robert F. Kennedy, Jr. ( Activist, Environmentalist ) Dysphonia
—— Founder (United for Peace ) Dysphonia
Jenny Craig ( Diet Guru ) OMD
Lynn Johnston ( Cartoonist ) Focal Dystonia
Rem Murray ( NHL Hockey Player ) ST
Chip Hanauer ( Race Car Driver NASCAR ) Dysphonia
Linda Thompson ( Music ) Dysphonia
Johnny Bush ( Music ) Dysphonia
Henry Austin ( Music ) Dysphonia-Focal Dystonia
Martha Grimes ( Author ) Focal Dystonia
Alison Young ( Music ) Focal Dystonia
Reinhard Gerbel ( Music ) Focal Dystonia
Derek Thompson ( UK Actor ) Dystonia
William Roth ( Author, Disability Advocate ) Dystonia/DBS
Opus Cartoonist ( Cervical dystonia )
Julie Sheldon ( Author, Dancer UK ) Dystonia
Christy Brwon ( Author UK ) Dystonia
Mike Harris ( News Reporter, Journalist ) Dystonia