Diane Breslow, MSW, LCSW, Coordinator Northwestern University Centers of Excellence for 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 Association  Family Caregiver Alliance  National Alliance for Caregiving

 Wilson Disease Association International  National Institute of Diabetes and Digestive and Kidney Diseases  American Liver Foundation  WE MOVE™ Education and Awareness

Assessment of driving skills, Rehabilitation, Recommendations for vehicle modifications.  Association for Driver Rehab Specialists 866/

 American Physical Therapy Association – Find a physical therapist.  Gentle Fitness  Sit and Be Fit

 Center for Medicare and Medicaid  Social Security Disability  National Organization of Social Security Claimants’ Representatives- 800/

 Disability Attorneys  National Disability Lawyers  Allsup Disabilitywww.allsup.com/Apply-for- Disability  ACCESS Program-888/  Legal Advocates for People with Disabilities-888/

Resources for finding facilities and determining individual suitability.  American Association of Homes and Services  Assisted Living Federation of America  Medicare Ratings of Nursing Homes  Care Pathways

24-hour response in a medical emergency.  CareLink-800/  HealthWatch-800/  Lifeline Medical Alert-800/  Life Alarm-800/

Payment plans are arranged solely between patient and vendor. Northwestern does not make endorsements.  Apria Healthcare-800/  Fitzsimmons Home Medical-866/  In-Step Mobility Products-800/  Jaspan Medical Systems-800/  National Seating and Mobility-630/  Reliable Medical Supplies–847/  Sammons Preston Supplies-800/  Specially For You Clothing-605/

 Medicare  Social Security  Needy Meds  Partnership for Prescription Assistance  Pharmaceutical Research and Manufacturers of America 800/  Pharmacy Programs (Walgreen’s, CVS, etc.)  Veterans 877/ www.va.gov

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

 Alliance for Children and Families Within the Membership Directory, select a state for a list of social service agencies.  National Mental Health Info. Center ases/ ases/ Select a state.

 Federal Transit Administration 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, LCSW