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FROM Bonnie Keszler TO You Show Details From

Bonnie Keszler

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Bonnie Keszler

Living with Dystonia Welcome. I was diagnosed with general dystonia in August 2010. The Lord is faithful! The moment of diagnses: Part of you is actually relieved to know what has been happening to you. The symptoms of dystonia are varied and unique for each person. General muscle weakness, pain, extreme exhaustion, muscle spasms and muscle control issues. Your life has changed. You may wonder: can I still accomplish my goals, my ambition? What does my future hold? What can I do to live a fulll life? What about school, employment, marriage? DYSTONIA Dystonia is a movement disorder similar to Parkinson's. It can be General - two or more connected muscle systems - ie neck, shoulders, spine, legs. It can be and usually is more localized. Some are affected by their eyes and jaw. Some experience severe neck spasms. You need to be correctly diagnosed by a competent movement disorder speecialist. The diagnosis process can be very dificult - it's hard to pinpoint exactly what is going on andm any doctors ares not trained in or aware of movement disorders. They originally thought I haddd MS. That was ruled out. We began treating with a Parkinson's regimen, sent me to a special clinic in Minneapolis for a second opinion,and the final diagnnosees was general dystonia. My symptoms did not quite fit Parkinson's. CARE TEAM Neurologist/movement disorder specialist - neurological systems/thisis your specialist Physical therapist - exercise Occupational therapist - guidance in finding tools to assist you in your movement problems and helpyou find ways to be more independent in your daily activities Psychologist/counselor - depression/coping TREATMENT Consists of combaating the patient'symptomss. Muscle relaxaant medication Dopamine.carbo-levodpa

tremor medication Pain medication Physical therapy Counseling and coping skills Extreme cases may require deep brain stimulatin or other brain surgery COPING Take each day - one day at a time. Set realiistic goals for yourself. Develop a suppport system - you are not an island. Realize it is not an easy thiing to deal with a chronic illlness. It is 24/7, and very demanding. It can cause a great deal of stress. I rely a great deal on my faith. OTHERS You are not alone. Reach out and make a difference where you are. It may be someone in a pharmacy check out line. That's happened to me. Find or start a support group with your local hospital's support. They have diabettes educators on staff to handle this. EXERCISE Find a regular exercise routine that works for you. Swimming, walking, bicycling, yoga. DIET Eat healthy. DOCTORS Work together as a team. However, there are timees when you may not find a doctor who relatees to you on the same level. If absolutely necessary, you can change - you are the patient, paying for professional caare of a chronic illness. If that is not happenig, it's time to change, for your health's sake. EDUCATION Learn as much about your condition as you can. It will help manage the disease. Knowledge is power. CELEBRITIES Mary Storm- Dystonia (Poet, Writer) Billy Mclaughlin - Focal Dystonia (Music) Paddy Doyle - Generalized Dystonia (Author, Screenwriter, Activist) SHANIA TWAIN- DYSPHONIA ( COUNTRY MUSIC STAR ) READ HER NEW MEMOIR ! Dawn Brinkley - Focal Dystonia- CD ( Mrs. North Carolina 2010, Activist Hallie Neill Focal Dystonia- CD ( NY Opera Singer ) Glen Estrin - Muscians' Dystonia ( Sinatra Band member ) Leon Fleischer - Focal dystonia (Music) Debra Freidman - Dystonia (Music) Jason Solomon - Focal Dystonia ( Music ) Scott Adams - Focal Dystonia (Creator of Dilbert) Diane Rehm - Dysphonia (NPR Host, Writer) Robert F. Kennedy, Jr. - Dysphonia (Activist, Environmentalist) Founder - Dysphonia (United for Peace) Jenny Craig - OMD (Diet Guru)

Lynn Johnston - Focal Dystonia (Cartoonist) Rem Murray - Cervical Dystonia (Former NHL Hockey Player) Chip Hanauer - Dysphonia (NASCAR Driver) Linda Thompson - Dysphonia (Music) Johnny Bush - Dysphonia (Music) Henry Austin - Dysphonia/Focal Dystonia (Music) Martha Grimes - Focal Dystonia (Author) Alison Young - Focal Dystonia (Music) Reinhard Gerbel - Focal Dystonia (Music) Derek Thompson - Dystonia (UK Actor) William Roth - Dystonia/DBS (Author, Disability Advocate) Opus - Cervical Dystonia (Cartoonist) Julie Sheldon - Dystonia (UK Author, Dancer) Christy Brown - Dystonia (UK Author) Alex - Generalized Dystonia with DBS (Dancer featured on the TV show The Doctors) Joel Goldman- Focal dystonia ( US Author ) Rogers Hartmann- Dystonia ( Producer, Activist) Laurel Chiten- Cervical Dystonia ( Producer, Films) Layla Love- Dystonia, OMD, Blepharospasm ( Photographer, NYC) Michael Sparks- Dystonia ( Photographer) F. Rangell- Focal Dystonia ( Artist, Pianist) RESOURCES The internet is full of resources for dystonia. There are internet blogs. There are on-line support sites. It's all there to help you. One day at a time. And please feel free to e-mail me for support. rbkeszler@yahoo.com Best to you!