Coping and Caring: Family and Emotional Support for Living with Wilson Disease

1. Coping and Caring:Family and Emotional Support for Living with Wilson Disease Diane Breslow, MSW, LCSW, Coordinator Northwestern University Centers of Excellence for Movement Disorders and Wilson Disease July 17, 2010

2. The Meaning of “Support” • Bear the weight of • Hold so as to keep from falling • Assist • Maintain • Strengthen • Champion

3. What is a Support Group? • 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. Support Groups: Guidelines • 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. Benefits of Support Groups • 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. Individual or Group Support • 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. Behavioral Symptoms of WD • 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. Coping with Behavioral Symptoms • 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. Concrete Resources • Caregiving Organizations • Disease Information • Driver Evaluation Sites • Exercise Classes and Videos/DVDs • Insurance • Legal Assistance • Living Facilities

10. Concrete Resources (continued) • 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 CAREGIVER ASSOCIATIONS

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

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

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

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 INSURANCE

16. 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 LEGAL ASSISTANCE

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

18. CareLink-800/525-6237 • HealthWatch-800/226-8100 • Lifeline Medical Alert-800/806-8485 • Life Alarm-800/780-5433 MEDICAL EMERGENCY RESPONSE SYSTEMS 24-hour response in a medical emergency.

19. 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 MOBILITY AND ADAPTIVE PRODUCTS Payment plans are arranged solely between patient and vendor. Northwestern does not make endorsements.

20. 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 PRESCRIPTION DRUGS

21. 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 PRESCRIPTION DRUG CO-PAY PLANS Charities that pay all or part of the co-pay for Medicare or other prescription plans.

22. 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. Center http://mentalhealth.samhsa.gov/databases/ Select a state. SOCIAL SERVICE AGENCIES

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

24. Thank you! • 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