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Diane Breslow, MSW, LCSW, Coordinator Northwestern University Centers of
Excellencefor Movement Disorders and Wilson Disease
July 17, 2010
Bear the weight of Hold so as to keep from falling Assist Maintain Strengthen Champion
A group of people with a common problem, who meet in a comfortable informal atmosphere in which they:◦ Acquire knowledge, information, resources◦ Share feelings and experiences◦ Learn from one another’s experiences◦ Gain support and understanding◦ Meet people and enjoy each other’s company
Professionally-led or peer-led Topic-oriented + discussion and sharing Question and Answer, e.g. “Ask the
Doctor” Encourage participants to connect with
one another Address caregivers as well as patients
Commonality among members Education, conferences, information Learning to adjust to diagnosis Practical techniques, advice, resources Receiving understanding and empathy Reducing stigma Socialization and bonding Encouragement and hope
One-on-one peer support is valuable. Being with others reduces isolation while
increasing connections: “I am not alone.” Remember: “You alone can do it, but you
cannot do it alone.”
Depression; changes in mood, personality, or cognition; delusions or hallucinations.
May be reactive to living with chronic disease.
More common with neurologic than with hepatic Wilson disease.
May respond to the treatment of WD.
Learn, and try to avoid, situations that may trigger behavioral symptoms.
Practice the techniques that work for you, e.g. relaxation, yoga, meditation, listening to music.
Ask for help from your support team of professionals and peers.
Allow others to reach out and help you. Pay attention to sleep, nutrition, exercise;
ask for help with these if necessary.
Caregiving Organizations Disease Information Driver Evaluation Sites Exercise Classes and Videos/DVDs Insurance Legal Assistance Living Facilities
Medical Emergency Response Systems Mobility and Adaptive Products Prescription Drug Programs Social Service Agencies Support Groups Transportation Workplace Accommodations
National Family Caregivers Associationwww.nfcacares.org
Family Caregiver Alliancewww.caregiver.org
National Alliance for Caregivingwww.caregiving.org
Wilson Disease Association International www.wilsonsdisease.org
National Institute of Diabetes and Digestive and Kidney Diseases www.niddk.nih.gov
American Liver Foundationwww.liverfoundation.org
WE MOVE™ Education and Awarenesswww.wemove.org
Assessment of driving skills, Rehabilitation, Recommendations for
vehicle modifications.
Association for Driver Rehab Specialistswww.aded.net 866/672-9466
American Physical Therapy Association www.apta.org – Find a physical therapist.
Gentle Fitness www.gentlefitness.com Sit and Be Fit www.sitandbefit.com
Center for Medicare and Medicaidwww.medicare.gov
Social Security Disabilitywww.ssa.gov
National Organization of Social Security Claimants’ Representatives- 800/431-2804
Disability Attorneys www.lawinfo.com National Disability Lawyers
www.nationaldisabilitylawyer.com Allsup
www.allsup.com/Apply-for-Disability ACCESS Program-888/700-7010 Legal Advocates for People with
Disabilities-888/332-8066
Resources for finding facilities and determining individual suitability.
American Association of Homes and Services www.aahsa.org
Assisted Living Federation of America www.alfa.org
Medicare Ratings of Nursing Homeswww.medicare.gov/NHCompare
Care Pathwayswww.carepathways.com/needs.cfm
24-hour response in a medical emergency.
CareLink-800/525-6237 HealthWatch-800/226-8100 Lifeline Medical Alert-800/806-8485 Life Alarm-800/780-5433
Payment plans are arranged solely between patient and vendor. Northwestern does not make endorsements.
Apria Healthcare-800/277-4288 Fitzsimmons Home Medical-866/474-2762 In-Step Mobility Products-800/558-7837 Jaspan Medical Systems-800/400-4210 National Seating and Mobility-630/522-0441 Reliable Medical Supplies–847/566-0800 Sammons Preston Supplies-800/323-5547 Specially For You Clothing-605/765-9369
Medicare www.medicare.gov/MPDPF Social Security www.socialsecurity.gov Needy Meds www.needymeds.com Partnership for Prescription Assistance
www.pparx.org Pharmaceutical Research and
Manufacturers of America www.phrma.org 800/762-4636
Pharmacy Programs (Walgreen’s, CVS, etc.) Veterans www.va.gov 877/222-8387
Charities that pay all or part of the co-pay for Medicare or other
prescription plans.
Chronic Disease Fund www.cdfund.org HealthWell Foundation
www.healthwellfoundation.org National Organization for Rare
Disorders (NORD) www.rarediseases.org
Patient Services Incorporated (PSI) www.uneedpsi.org
Alliance for Children and Families www.alliance1.org Within the Membership Directory, select a state for a list of social service agencies.
National Mental Health Info. Centerhttp://mentalhealth.samhsa.gov/databases/ Select a state.
Federal Transit Administration www.fta.dot.gov For local addresses, select “Offices.”
Participants at today’s Conference Mary L. Graper and the Wilson Disease
Association International Dr. Videnovic, Dr. Green, and the
Northwestern Wilson Disease Center of Excellence Team
Contact: Diane Breslow, MSW, [email protected]
