1. Diane Breslow, MSW, LCSW, Coordinator Northwestern University Centers of Excellence for Movement Disorders and Wilson Disease July 17, 2010

2.  Bear the weight of  Hold so as to keep from falling  Assist  Maintain  Strengthen  Champion

3.  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

4.  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

5.  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

6.  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.”

7.  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.

8.  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.

9.  Caregiving Organizations  Disease Information  Driver Evaluation Sites  Exercise Classes and Videos/DVDs  Insurance  Legal Assistance  Living Facilities

10.  Medical Emergency Response Systems  Mobility and Adaptive Products  Prescription Drug Programs  Social Service Agencies  Support Groups  Transportation  Workplace Accommodations

11.  National Family Caregivers Association www.nfcacares.org  Family Caregiver Alliance www.caregiver.org  National Alliance for Caregiving www.caregiving.org

12.  Wilson Disease Association International www.wilsonsdisease.orgwww.wilsonsdisease.org  National Institute of Diabetes and Digestive and Kidney Diseases www.niddk.nih.gov www.niddk.nih.gov  American Liver Foundation www.liverfoundation.org  WE MOVE™ Education and Awareness www.wemove.org

13. Assessment of driving skills, Rehabilitation, Recommendations for vehicle modifications.  Association for Driver Rehab Specialists www.aded.netwww.aded.net 866/672-9466

14.  American Physical Therapy Association www.apta.org – Find a physical therapist. www.apta.org  Gentle Fitness www.gentlefitness.comwww.gentlefitness.com  Sit and Be Fit www.sitandbefit.comwww.sitandbefit.com

15.  Center for Medicare and Medicaid www.medicare.gov  Social Security Disability www.ssa.gov  National Organization of Social Security Claimants’ Representatives- 800/431-2804

16.  Disability Attorneys www.lawinfo.comwww.lawinfo.com  National Disability Lawyers www.nationaldisabilitylawyer.com www.nationaldisabilitylawyer.com  Allsup www.allsup.com/Apply-for- Disabilitywww.allsup.com/Apply-for- Disability  ACCESS Program-888/700-7010  Legal Advocates for People with Disabilities-888/332-8066

17. Resources for finding facilities and determining individual suitability.  American Association of Homes and Services www.aahsa.orgwww.aahsa.org  Assisted Living Federation of America www.alfa.org www.alfa.org  Medicare Ratings of Nursing Homes www.medicare.gov/NHCompare  Care Pathways www.carepathways.com/needs.cfm

18. 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

19. 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

20.  Medicare www.medicare.gov/MPDPFwww.medicare.gov/MPDPF  Social Security www.socialsecurity.govwww.socialsecurity.gov  Needy Meds www.needymeds.comwww.needymeds.com  Partnership for Prescription Assistance www.pparx.org www.pparx.org  Pharmaceutical Research and Manufacturers of America www.phrma.org 800/762-4636 www.phrma.org  Pharmacy Programs (Walgreen’s, CVS, etc.)  Veterans www.va.gov 877/222-8387www.va.gov

21. Charities that pay all or part of the co-pay for Medicare or other prescription plans.  Chronic Disease Fund www.cdfund.orgwww.cdfund.org  HealthWell Foundation www.healthwellfoundation.org www.healthwellfoundation.org  National Organization for Rare Disorders (NORD) www.rarediseases.org www.rarediseases.org  Patient Services Incorporated (PSI) www.uneedpsi.org www.uneedpsi.org

22.  Alliance for Children and Families www.alliance1.org Within the Membership Directory, select a state for a list of social service agencies. www.alliance1.org  National Mental Health Info. Center http://mentalhealth.samhsa.gov/datab ases/http://mentalhealth.samhsa.gov/datab ases/ Select a state.

23.  Federal Transit Administration www.fta.dot.gov For local addresses, select “Offices.” www.fta.dot.gov

24.  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, LCSW dbreslow@nmff.org