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This support group is created by patients for patients in the belief that together we can make a difference in the quality of our lives.
Below are past meeting that we have had. This page is under construction, but we are starting to offer summaries of the information given in each of these meetings, so that you can simply click on a link and learn.
FROM 2010 EDUCATIONAL MEETINGS....
- From FEBRUARY 3, 2011
PHYSICAL THERAPY FOR DYSTONIA
Len Norfleet,, PT, BCAT, Masters level physical therapist / board certified athletic trainer, specializing in neuro kinetic systems (NKS).
Len will address balance issues and present a specialized movement and therapeutic exercise regimen he has developed for people with movement disorders.
Len has his own physical therapy office at 1303 S. Grand Blvd., 838-6060 and provides a variety of therapies...gentle yet progressive...cranial/ sacral, myofascial release, joint mobilization neuro-kinetics blending neuro developmental sequencing with slow progressive exercise to restore tone, balance, ROM, posture, strength, power and speed in supportive, directly supervised, life long skilled Physical Therapy. Coming soon Occupational Therapy, as well post rehab advance wellness so you never stop training, and learning. On call weekends for pain, acute injury, sprain, strains.
- From MARCH 18th, 2011
PSYCHOLOGICAL AND COGNiTIVE ISSUES ASSOCIATED WITH DYSTONIA
Darrelle Volwiler, Ph.D., a clinical psychologist in independent practice in Spokane, WA, Dr. Volwiler specializes in treating people with neurological and other medical disorders.
Jennifer Van Wey, Psy.D., a clinical psychologist at Northwest Neurobehavioral Institute in Spokane who specializes in the assessment of individuals with dementia and other neurological disorders.
Dr. Van Way will talk about cognitive functioning in individuals with dystonia, specifically how dystonia can affect attention, language, memory, and frontal executive functions.
Dr. Volwiler will discuss the psychological impact of living with dystonia, including adjustment to the physical and cognitive changes in this group of neurological disorders.
- From APRIL 28th, 2011
DYSTONIA: Wellness for a Healthier Brain
Monique Giroux, M.D., a nationally recognized movement disorder specialist and medical director of the Northwest Parkinson's Foundation in Kirkland, WA. She has created an online wellness community for people with Parkinson's and other movement disorders.
Dr. Giroux is the medical director of the Northwest Parkinson’s Foundation and the Director of the Wellness Center, which offers a new kind of care combining the best of medical and rehabilitative care with a focus on wellness and inner healing. Dr. Giroux also leads The National Parkinson’s Foundation Care Consortium, designed to bring together national experts in the spirit of collaboration and innovation. She has treated many people with dystonia and other movement disorders, and she will speak to us about wellness and its affects on quality of life in dystonia.
Dr. Giroux is currently studying holistic medicine as a clinical fellow in Integrated Medicine at the University of Arizona. Dr. Giroux completed her medical residency at Yale followed by a two-year fellowship in Movement Disorders at Emory University in Atlanta, Georgia. She is board certified in Neurology and serves as medical faculty for the NPF Allied Team Training Program.
- From MAY 12th, 2011
DR. KAREN STANEK is a renowned Spokane physiatrist specializing in spasticity. She has treated many people who have dystonia and she will speak to us about different ways to manage dystonia and how rehabilitation medicine can help with function.
What is a physiatrist? It is a medical doctor trained in physical medicine and rehabilitation. A physiatrist’s goal is to enhance and restore functional ability and quality of life for those with physical impairments or disabilities.
Dr. Stanek is highly respected in her field, is loved by members of our group who are her patients, and will give us some new perspectives.
- From JUNE 1st, 2011
Dr. Susie Ro, M.D., a movement disorder specialist, is moving to Spokane in May, 2011, and will practice at N.W. Neurological, in association with Dr. David Greeley. Dr. Ro currently is the director ot the Movement Disorder Clinic at Swedish Neuroscience in Seattle. She has completed fellowships in both clinical neurophysiology (EMG and evaluation/ treatment of neuromuscular disease) and in movement disorders, so she will be a great addition to the Spokane medical community.
Dr. Ro's specialties include Botox Treatment, Botulinum Treatment, Deep Brain Stimulation, Dystonia, Electromyography (EMG), Gait Analysis, Hemifacial Spasm, Movement Disorders, Parkinson's Disease, Tic Disorders, and Tremor.
Dr. Ro will practice at N.W. Neurological, in association with Dr. David Greeley.
Dr. Ro will speak to us about Neuromodulation for Dystonia, including BoNT, ITB, and DBS (and she will explain what all these things mean!).
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From SEPTEMBER 10th, 2011
Sunflower Yoga Studio, 6413 E. 14th Ave., Spokane Valley 99212, 509-535-7369
GENTLE & RESTORATIVE YOGA WITH JACKIE KITTEL
Jackie Kittel OTR/L, E-RYT is the owner and yoga instructor at Sunflower yoga. She is an Iyengar certified yoga instructor and is an experienced registered teacher at the 500 hour level with Yoga Alliance. She has been practicing hatha yoga since 1990 and began teaching in 1994. Jackie graduated from the University of Pittsburgh with a degree in occupational therapy. She has over a dozen years of experience working as an occupational therapist helping to rehabilitate people of all ages with physical disabilities. Jackie's special interests include yoga for stress reduction and balancing of the nervous system, working therapeutically with yoga for back care, scoliosis, cancer recovery as well as many other physical conditions. Jackie combines her medical knowledge with the ancient wisdom of yoga.
Jackie will teach us yoga poses that will help us with dystonia.
One of our members recently sent me this response when she read that we were having a meeting about Iyengar Yoga....
"I've been doing yoga (Inyengar style) for the past 5 years (even before I was diagnosed with dystonia) and I can't say enough on how much it has helped me remain flexible. I can't imagine how any amount of yoga could not help with someone who has dystonia. The awareness that it brings to your body is amazing. If you have any folks that live in the Moscow-Pullman area that want to give it a try, I would highly recommend The Moscow Yoga Center. My instructor for the past 3 years, Erika, has been really helpful in modifing poses for me and is very aware of movements that might affect my particular dystonia. I honestly believe that I receive just about as much relief from the yoga as I do from my Botox. "
Family & friends welcome. Cost is FREE.
- From OCTOBER 17th, 2011
SPEECH THERAPY: dystonia and the Lee Silverman Voice Treatment (LSVT) program - Loud! - with Doreen Nicholas
Speech plays a critical role in everyday life. It is our way to communicate with others. Yet dystonia can infringe upon our ability to express ourselves by contracting our vocal cords, affecting the flexibility of our diaphragms, or making us self conscious of our limitations.
The Lee Silverman Program is a fun approach to speech therapy, appropriate for anyone with dystonia, whether or not this disorder affects your vocal cords. This will be a chance for us to learn and play with our voices, while gaining confidence in expressing ourselves.
Family & friends welcome. Cost is FREE.
Doreen Nicholas, M.S., CCC-SLP, M.H.P.A,. is a Senior Lecturer and Clinical Director of the University Hearing and Speech Clinic at Eastern Washington University, Riverpoint Campus. Doreen joined the department in 1995. Doreen received her M.S. in Communication Disorders from the University of Texas at Dallas. She also earned a Master of Health Policy Administration from Washington State University in 1998. Her interests include medical speech pathology, with emphasis in aphasia and dysphagia, as well as accent modification. She is also interested in the business practices of speech pathology and audiology. Doreen is trained in the Lee Silverman Therapy Program which has proven very helpful to many people with movement disorders.
- From NOVEMBER 2nd, 2011
LET'S TALK!: a dystonia discussion group
Denise Gibson, leader of our Dystonia Support Group of Spokane.
Bring your thoughts and questions about dystonia and how you are dealing with this movement disorder. The meeting will be an open discussion with members sharing tips, concerns, resources and ideas.
Since our educational meetings seldom give us an opportunity for sit-down discussion, this is our time for each other.
- from Feb. 10, 2010
LEARNING ABOUT DYSTONIA AND THE BRAIN
William Britt, Jr., MD
Dr. Britt will give us an overview of dystonia and the parts of the brain that are affected.
- from March 11
BRAIN FITNESS
PositScience.com. or enjoy the book, The Brain that Changes Itself, by Norman Doidge, PhD.
- from April 15, 2010
Living with Dystonia
DYSTONIA: DEFINING & TREATING THIS DISORDER
David Greeley, MD, FAAN
Dr. Greeley, a Spokane neurologist, will give us a definition of dystonia and explain the medical therapies available for treatment. As a member of the International Dystonia Study Group, he can also update us on the latest research. A Question-and-Answer session will follow the talk, so bring your questions and be prepared for an informative discussion.
- From May 15, 2010
Living with Dystonia
OCCUPATIONAL THERAPY FOR DAILY LIVING WITH DYSTONIA
William Gibson, OTR/C,
Bill Gibson is an occupational therapist whose wife has dystonia. He will give us an inside perspective on how we can best work with an Occupational Therapist to better cope with this challenging disorder. His talk will be relevant to those of us with dystonia and to our loved ones who support us on a daily basis.
- From June 8, 2010
Living with Dystonia
I THINK I AM RELAXED: NOW WHAT?
Anthony Whitney, MS, IMHC, BCIA
With Dystonia our perceptions can become skewed by the erroneous sensory input we receive from overly contracted muscles and tightened joints. So our concept of being relaxed may not allow us to achieve a full state of deep relaxation. Anthony will help us understand the importance of breathing, relaxation and meditation, and the impact they have on our brains and bodies. He will give us a guide for starting to practice and develop more profound relaxation skills.
- from September 7, 2010
LET'S TALK: Discussion about Dystonia
This was a discussion about dystonia, sharing understanding and tips.
- from October 9
STRUCTURAL INTEGRATION THERAPY FOR DYSTONIA
Kevin Lucas, LMT, CSI
Structural Integration is a manual therapy that works on the fascia, the envelope that surrounds the muscles. A number of our members have found enormous relief through this therapy. An article in the National Spasmodic Torticollis (Cervical Dystonia) Association quoted a member who visited a physician in Houston who worked the fascia and found that after 7 months of therapy most of her symptoms are abated. Kevin Lucas will demonstrate how structural integration helps our muscles to move more fluidly and bring us relief.
- from November 9, 2010
A NEW NEUROTOXIN - XEOMIN
Jeff Riordan, Merz Pharmaceuticals
Xeomin is a new generation of neuroToxin therapy. It is more purified, resulting in 84% less protein than the leading brand. Will this help those who have built up an immunity to a neuroToxin previously? Time will tell. It is of interest to all of us so that we know our options and can help make decisions about our treatments.
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