resources Parkinson s Disease Connecticut Guide NATIONAL TRIALS RESOURCES CLASS CLASS CLASS NEUROLOGISTS SUPPORT GROUPS DEEP BRAIN CLINICAL DANCE
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1 CONNECTICUT PARKINSON S SUPPORT GROUPS DEEP BRAIN STIMULATION CARE PARTNERS SUPPORT GROUPS ASSOCIATIONS & FOUNDATIONS NATIONAL CLINICAL TRIALS SPECIALIZED SERVICES ASSOCIATIONS & FOUNDATIONS STATEWIDE Parkinson s Disease THE YOUNG PARKINSON S SUPPORT GROUPS CONNECTICUT 1 resources COMPLIMENTARY RESOURCES EXERCISE CLASS TAI CHI CLASS DANCE CLASS VOICE THERAPY Connecticut NEUROLOGISTS Guide ADDITIONAL WEBSITES
2 Parkinson s Disease Connecticut resources Guide This Guide is a work in progress. We will be updating and adding new resources as we learn about them. Please assist us in our endeavor by sending resource information to resources guide@cpwg.org TABLE OF CONTENTS CONNECTICUT NEUROLOGISTS... 3 SPECIALIZED SERVICES... 4 GERONTOLOGISTS... 4 SLEEP CLINICS... 4 DEEP BRAIN STIMULATION... 5 ASSOCIATIONS AND FOUNDATIONS NATIONAL... 6 ASSOCIATIONS AND FOUNDATIONS STATEWIDE... 8 PARKINSON S SUPPORT GROUPS IN CONNECTICUT... 9 CARE PARTNERS SUPPORT GROUPS COMPLIMENTARY RESOURCES EXERCISE DANCE TAI CHI, MASSAGE THERAPY, VOICE THERAPY CONNECTICUT MEDICAL MARIJUANA PROGRAM DURABLE MEDICAL EQUIPMENT CLINICAL TRIALS (RESEARCH) ADDITIONAL WEBSITES GENERAL INFO AND EDUCATION GENETIC TESTING, HOSPITAL STAYS LEGAL 2 ISSUES., MEDICATION RELATED, WORK AND DISABILITY ISSUES, COMPLIMENTARY RESOURCES... 21
3 CONNECTICUT NEUROLOGISTS Movement Disorder Society CT Specialists Contact: CT American Parkinson Disease Association Chapter, Connecticut Neurologists Find a Doctor by specialty or region of CT Healthgrades.com Hospital for Special Care New Britain Parkinson s Disease and Movement Disorders Center Contact: Sharon McDermott CT Hospitals Check For Neurology Departments Contact: CT Hospital Association chime.org
4 SPECIALIZED SERVICES GERONTOLOGISTS CT Association of Area Agencies on Aging-throughout CT ctagenciesonaging.org SLEEP CLINICS Gaylord Hospital Contact: gaylord.org
5 DEEP BRAIN STIMULATION Medtronic, Inc. Disseminates guide to the Implanting Centers in the Connecticut area Contact: Michael Hahn,
6 ASSOCIATIONS & FOUNDATIONS NATIONAL Information and Referral, Education, Webinars, Newsletters Associations and Foundations have excellent educational webinars, many archived. Sign up on their sites to receive information. American Parkinson Disease Association (APDA) apdaparkinson.org Michael J. Fox Foundation for Parkinson s Research (MJFF) Michaeljfox.org Partners in Parkinson's, a health initiative designed to provide new tools and resources to optimize care at every stage of the disease. partnersinparkinson's.org 6 National Parkinson Foundation (NPF) parkinson.org
7 ASSOCIATIONS & FOUNDATIONS NATIONAL Parkinson s Disease Foundation (PDF) pdf.org Parkinson s Action Network (PAN) (advocacy organization) parkinsonsaction.org Young Onset Parkinson s See Above -APDA and National Parkinson Foundation 7
8 ASSOCIATIONS & FOUNDATIONS STATEWIDE Information and Referral, Education APDA Connecticut Chapter CTAPDA.org Contact: Mary Ellen Thibodeau, PAN Connecticut Chapter Contact: Don Feliciano, Veterans Administration, West Haven, CT Contact: Dr. Diana Richardson,
9 PARKINSON S SUPPORT GROUPS CONNECTICUT 9 Connecticut Parkinson s Working Group (CPWG) 3rd Sat. of the month,the Village at South Farms, Middletown. cpwg.org Contact: Jeffrey LaGrange, CT Advocates for Parkinson s (CAP) CAPs of Southbury, Glastonbury, Branford parkinsonsct.org Contact: Steve DeWitte, Miçhelle Hespeler, CURENOW, organization that raises funds directed to Parkinsons research. Contact:Karl Hespeler. khespeler@tricomgroup.com Make A Difference Parkinson's Alliance (MADPA) Working as a united voice for the cure. Comprised of three support groups in CT: CT Advocates for Parkinson's, Steve DeWitte, sdkeepthefaith@gmail.com CT Parkinson's Working Group, Jill Baldwin jerseyisle@hotmail.com Torrington Area Parkinson's Support Group, sgpelchat@sbcglobal.net s.com Contact: Steve DeWitte,
10 PARKINSON S SUPPORT GROUPS CONNECTICUT CT APDA Affiliated Support Groups CTAPDA.org MThibodeau@outlook.com Contact : Mary Ellen Thibodeau, Support groups by town: Bridgeport, Derby-Griffin Hospital, East Hartford, Ellington, Farmington, Glastonbury, Groton, Guilford, Hamden, Milford, Mystic, New Britain, New Canaan/ Young Onset, Hospital for Special Care, Putnam, Ridgefield, Rocky Hill, Shelton. Southbury, South Windsor, Stamford, Wallingford, West Hartford, Westport, Westport/Young Onset, Willimantic, Woodbridge Parkinson s Young Onset Support Group of CT (PYOSSG) Southbury sdkeepthefaith@gmail.com Contact: Steve DeWitte,
11 PARKINSON S SUPPORT GROUPS CONNECTICUT Young Young Active Parkinson s Advocates of Connecticut (YYAPA) yyapamichelle@comcast.net Greater Hartford Contact: Michelle Hespeler, Torrington Area Parkinson's Support Group Contact: Susan Pelchat, sgpelchat@sbcglobal.net
12 s CARE PARTNERS SUPPORT GROUPS Connecticut Parkinson s Working Group (CPWG) 3rd Saturday of month, The Village at South Farms, Middletown. lisagb@comcast.net Contact: Lisa Burtt, Visiting Nurse Association Community Healthcare (VNA) Guilford Contact:Kathleen Eagle,
13 COMPLIMENTARY RESOURCES EXERCISE LSVT BIG (Statewide Physical Therapy) To find certified LSVT BIG therapist inct. Contact: LSVT, Contact in CT: Mary Ellen Thibodeau, APDA, CT Chapter, Senior Centers Throughout Connecticut See statewide listing at General Parkinson s Exercise Danbury: Medical Fitness Center, ext.364 West Hartford: Atria, Delay the Disease Exercise Program, Westbrook:Valley Shore YMCA Ellen Nichele, enichele@vsymca.org x121 (Tuesday, Thursday)
14 COMPLIMENTARY RESOURCES Beat Parkinson s Disease Today (Functional Interval Training and Boxing for People With Parkinson s Disease) Locations throughout the state: Branford, Enfield, Glastonbury, Marlborough, New Britain, New Milford, Old Saybrook Contact: Michelle Hespeler, Rock Steady Boxing Deep River: Squared Circle Studio Contact: (Tuesday, Thursday, Saturday) East Hartford Contact: Gwen, Therapeutic Exercise for PD Middletown Senior Center Contact: Kitch Czernicki, The Watermark, Bridgeport, CT Contact: Cindy McGuire,
15 COMPLIMENTARY RESOURCES Visiting Nurse Association Community Healthcare (VNA) Guilford Contact: Kathleen Eagle, Joint Effort Guided low impact exercises for age 50 plus. Contact: David Penna, DANCE Dancing with Parkinson s Program Dancing For Joy Sponsored by Neighborhood Music School: school.org. Teacher Affiliate of Dance for PD. danceforparkinsons.org. Middletown and New Haven Contact: Laura Richling, or New London Contact: Rachel Balaban, Parkinson s Dance Classs Shoreline/Guilford and Old Saybrook Sponsored by Rehab Concepts, Physical Therapy Services Contact: Rose Costanzo,
16 COMPLIMENTARY RESOURCES TAI CHI Exercise Tai Chi for Health Wallingford Senior Center Contact: Phyllis Drescher, MASSAGE THERAPY MassageTherapy Contact: Lynne Keyser, LMT, Hands Over Pain, VOICE THERAPY LSVT LOUD (Statewide Voice Therapy designed for those with Parkinsons) To find certified LSVT LOUD speech therapist in CT: Contact: LSVT, In CT, contact Mary Ellen Thibodeau, APDA CT Chapter, Voice Therapy Guilford Contact: Amy Levine, Rehab Concepts, New Britain Contact:Kimberly Winter, SLP, Hospital for Special Care, Wallingford Contact: Donna Shumway, Masonicare Health Center, (Outpatient Rehab Services),
17 COMPLIMENTARY RESOURCES Therapy) pist in CT. deau, APDA, CONNECTICUT MEDICAL MARIJUANA PROGRAM Contact: Talk to your own Doctor first but if you need state authorized Doctor Contact: DURABLE MEDICAL EQUIPMENT See your local pharmacies and drug stores. Charlies Closet, Guilford, CT, used and shared medical equipment clearing house. Contact: gimct.org/closet HOME MODIFICATION AARP, Road to Livabilityi Contact: Erica Michalowski, Hartford Office
18 CLINICAL TRAILS (RESEARCH) Institute for Neurodegenerative Disorders (IND) indd.org Contact: Pfizer New Haven CRU (Clinical Research Unit) Contact: Barbara Fussell, RN, MJFF Fox Trial Finder (info re: research trials and participation) Contact: Clinical Trials Transportation Program Help interested volunteers, either with or without Parkinsons, to get to and from clinical trial appointments. (CT, NY,BOSTON) Contact: Steve DeWitte,
19 ADDITIONAL WEBSITES GENERAL INFO AND EDUCATION (videos, webinars, webcasts) World Parkinson Coalition archives Webcasts exploring current thinking and cutting edge issues in Parkinsons Disease. Fourth World Parkinson s Congress to take place in Portland, Oregon, September, 20 to 23, 2016, with webcasts to follow. (National Institute of Neurological Disorders and Stroke) (group who wrote The Peripatetic Pursuit of Parkinson Disease) (prominent neurologists) World Parkinson Coalition archives 2015 webcasts exploring current thinking and cutting edge issues in Parkinsons Disease
20 ADDITIONAL WEBSITES GENETIC TESTING HOSPITAL STAYS (NPF program and free kit to support best possible care during hospital stay) 20
21 ADDITIONAL WEBSITES LEGAL ISSUES (webinar) MEDICATION RELATED (patient assistance programs) WORK AND DISABILITY ISSUES http.// (National Council on Independent Living) http.// (Job Accomodation Network) COMPLIMENTARY RESOURCES (dance for those with Parkinson s Disease) (Renee Le Verrier s, person with Parkinson s,yoga for movement disorders) 21
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