PLEASE READ ALL OF THIS WITH A GRAIN OF SALT: THEY ARE NY NOTES AND MIGHT NOT BE ACCURATE. THIS IS MEANT AS AN INSPIRATION, NOT TOTALLY ACCURATE FACT. THANKS LINDA MAY MONTANO LINDAMONTANO@HOTMAIL.COM
A Japanese piano player with focal/hand dystonia, said he "cures" himself with MEDITATION, NOT MEDICATION. He lays his fingers on the piano and talks to them, relaxing one finger at a time for 10 minutes each. It has taken him 7 years to be able to play with one hand completely workable and on the other hand he uses 2 fingers. He was incredibly inspiring and he says he "TALKS TO HIS FINGERS AND HIS BRAIN."
The next panel member was a young man who had gotten so isolated and was using excessive drinking to handle the pain of his whole body dystonia. He had had DBS and was happy he did that.
The third panel member was a young woman with whole body dystonia who opted to "live with it" rather than have to shave her hair for an operation or have pacemakers placed in her chest. She was in college and very brave and strong and very open. She talked about not being shy, having courage, not fearing when people look at you. She was really spasming and twitching and such an example of doing things her way. She had a speech impediment but "talked" anyway and said that as long as she could "talk" then she would opt for that and not think about the DBS which frightened her.
The fourth panel member was a high school young man who had DBS after many years of suffering pain and crippling. His mother was sitting next to him and it was so helpfull to hear her story as well. Her son was totally bed-ridden and in a wheelchair and home schooled and he had had a very hard time getting the proper medical analysis of his symptoms, holding up a 3 inch package of cards which were saved from the many doctors he had gone to! He was so positively spirited and smiling and all of the panel members agreed that humor was a life-saver. His mother brought in Holocaust survivors to talk to her son when he had to stay at home so that he would have inspiring role models of survivors of difficulties! His mother said that family members need to support, advocate for those with dystonia, and help raise $ for dystonia research.
March 4, 2013 I attended the BACHMANN STRAUSS DYSTONIA/PARKINSON CONFERENCE In Manhattan. I will give an overview of the conference.
1. DR ERIC NESTOR, Director of the BRAIN INSTITUTE of MT SINAI talked about " the molecular mechanisms of addiction and depression based on work in animal models, to develp improved treatments of depression"
2. PANEL: MODERATOR: DR. EMILY SENAY: Dr, medical/public health educator, broadcast Journalist, author.
Chair: DR BARBARA CHANGIZI: Assistant Prof of Neurology. Manages DBS , evaluates, programs DBS devises.
DR BRIAN KOPELL, Neurosurgeon, Mt Sinai. 500 DBS surgeries. Targeting Parkinsons, tremor, tinnitus, depression. Pioneered intra-operative imagaing during DBS to spplemet microelectrode recording.
DR NUTAN SHARMA, Neurologist, Mass Gen. Researches the causes of Dystonia. Established a dystonia clinic at Mass Gen and evaluates and cares for dystonia patients.
Panel was very informative and I asked Dr Sharma a question about alternatives to botox and she suggested accupuncture.
PATIENT PANEL:
4 Dystonia patients and the mother of the youngest, were incredibly helpful and informative.
1. DR ERIC NESTOR, Director of the BRAIN INSTITUTE of MT SINAI talked about " the molecular mechanisms of addiction and depression based on work in animal models, to develp improved treatments of depression"
2. PANEL: MODERATOR: DR. EMILY SENAY: Dr, medical/public health educator, broadcast Journalist, author.
Chair: DR BARBARA CHANGIZI: Assistant Prof of Neurology. Manages DBS , evaluates, programs DBS devises.
DR BRIAN KOPELL, Neurosurgeon, Mt Sinai. 500 DBS surgeries. Targeting Parkinsons, tremor, tinnitus, depression. Pioneered intra-operative imagaing during DBS to spplemet microelectrode recording.
DR NUTAN SHARMA, Neurologist, Mass Gen. Researches the causes of Dystonia. Established a dystonia clinic at Mass Gen and evaluates and cares for dystonia patients.
Panel was very informative and I asked Dr Sharma a question about alternatives to botox and she suggested accupuncture.
PATIENT PANEL:
4 Dystonia patients and the mother of the youngest, were incredibly helpful and informative.
A Japanese piano player with focal/hand dystonia, said he "cures" himself with MEDITATION, NOT MEDICATION. He lays his fingers on the piano and talks to them, relaxing one finger at a time for 10 minutes each. It has taken him 7 years to be able to play with one hand completely workable and on the other hand he uses 2 fingers. He was incredibly inspiring and he says he "TALKS TO HIS FINGERS AND HIS BRAIN."
The next panel member was a young man who had gotten so isolated and was using excessive drinking to handle the pain of his whole body dystonia. He had had DBS and was happy he did that.
The third panel member was a young woman with whole body dystonia who opted to "live with it" rather than have to shave her hair for an operation or have pacemakers placed in her chest. She was in college and very brave and strong and very open. She talked about not being shy, having courage, not fearing when people look at you. She was really spasming and twitching and such an example of doing things her way. She had a speech impediment but "talked" anyway and said that as long as she could "talk" then she would opt for that and not think about the DBS which frightened her.
The fourth panel member was a high school young man who had DBS after many years of suffering pain and crippling. His mother was sitting next to him and it was so helpfull to hear her story as well. Her son was totally bed-ridden and in a wheelchair and home schooled and he had had a very hard time getting the proper medical analysis of his symptoms, holding up a 3 inch package of cards which were saved from the many doctors he had gone to! He was so positively spirited and smiling and all of the panel members agreed that humor was a life-saver. His mother brought in Holocaust survivors to talk to her son when he had to stay at home so that he would have inspiring role models of survivors of difficulties! His mother said that family members need to support, advocate for those with dystonia, and help raise $ for dystonia research.
RANDOM NOTES:
OLD DRUGS: BACLOPHAN, ANTICHALONERIGICS(!), BENZODIAZEHINE(!), TETRABENZADINE
NEW DRUGS:
AMPHYCILLAN FOR DYT1 DYSTONIA
ACETYLHEXPEPTIDE 8 FOR BLEPHAROSPASM, A CREAM(!)
DEFERPRONE FOR CHILDREN
BACLOPHAN PUMP
TMS MAGNETIC MEDICINE
TONGUE STIMULATOR
TAKE ALL OF THE ABOVE WITH GREAT CAUTION..NOT SURE OF MY NOTES ACCURACY...
RANDOM NOTES:
DYSTONIA IS ABNORMAL ELECTRICAL RHYTHM IN THE BRAIN
EFFECTS THE GLOBUS PALLUS AETERNUS
STAY LIMBER, KEEP BRAIN PLASTIC, REMODEL THE BRAIN TO COMPENSATE
DONT DO NECK CHIROPRACTIC, CAN LEAD TO ARTHRITIS AND OTHER DAMAGE(2 DRS SAY THIS)
DO GENTLE PHYSICAL THERAPY
TONGUE STIMULATOR(NO MORE INFO ABT THIS)
BRAIN WORKING 2 HARD WITH DYSTONIA, GIVING OUT 2 MANY SIGNALS
2 WORKSHOPS
1. ALEXANDER TECHNIQUE:TAUGHT BY BILL CONNINGTON: GREAT WORKSHOP: HE TEACHES AT SAFRA PARKINSONS WELLNESS PROGRAM AND ALSO SEES PEOPLE PRIVATELY. HE IS IN NYC. GREAT GREAT GREAT.
HE SAYS:
CALM AND RELAX THE MUSCLES
CALM THE NERVOUS SYSTEM DOWN
MAKE MUSCLES DEEP AND SOFT
REMIND SELF TO BE TALL/LONG
KEEP NECK VERY QUIET
STRETCH
REMIND YOURSELF OF THINGS WHEN U WALK. GET TALL, STAY STRAIGHT
BE CONSCIOUS AND REMIND SELF OF WHAT YOU WANT
GET EVERYTHING AS RELAXED AS POSSIBLE
PATIENT WISDOM:
I STIMULATE MY BRAIN WITH MY BRAIN
I TALK TO MYSELF
I IMAGEINE MY FINGERS ARE MOVING NORMALLY
NO CAFFEINE, TOBACCO ALCOHOL OR SUGAR
MEDITATION
WATCH MOVIES TO GET YOUR MIND OFF OF DYSTONIA
TELL YOUR HANDS NOT TO SHAKE
TRUST YOUR BRAIN
I TRY NOT TO FIGHT WITH MY DISEASE
WHATEVER COMES I TELL MY MIND ITS OK
ANXIETY BRINGS IT ON
DESTRACTION IS THE BEST METHOD
DONT LET IT CONTROL YOU , U CONTROL IT
WORKSHOP 2: THE BRAIN: RICHARD SABEL. FELDENKRAIS SPECIALIST, OT TEACHER.
HE SAYS:
IN TAI CHI, YOGA...THE WHOLE BODY MOVES
YOU WANT THREE THINGS: STRENGTH, FLEXABILTY, AWARENESS
THINGS T DO
1. CREATE NEW GOOD HABITS
2. BE AWARE TO CHANGE HABITS, LEARN
3. TO CHANGE. NEED A SKILLED INTERVENTION
4 SMALL EASY MOVEMENTS, SLOW AND GENTLE
ALLOW WHOLE BODY TO PARTICIPATE, INCORPORATE FULL BODY MOVEMENT. WORK MINDFULLY WITH EASE VS EFFORT.
HE TAUGHT WHENU TURN TO LOOK IN YOUR BACK WINDOW, MOVE YOUR WHOLE SIDE TO LOOK BACK NOT JUST THE NECK.......
nice information in your post
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