Learning to live with blindness Macdonald (Don) Curran AMD Alliance International

About me Chair and Board member of AMD Alliance International Past Vice-Chair and Board member of Macular Disease Society UK Partner in Insigniam performance Past VP Pacific Region of United Airlines

AMDAI objectives Create awareness through advocacy and education –Prevention –Research –Treatment access –Psychosocial

Prevention of AMD Smoking cessation Diet and antioxidants UV protection Exercise Cholesterol reduction Eye health checks in over 50s

AMD research Use internet to identify current and future research and ongoing studies Give hope to our members

AMD treatments Recent advances have provided me with reassurance that my children and grandchildren will not go blind due to AMD Visudyne, Macugen, Avastin and Lucentis Others in development As a patient I want to know that retinal specialists are sure about Avastin safety

My Experience Welcome VINCE, I wish you had been here for me. a new national support and counselling organization A great venture, of great value. My own experience was devastating, going from excellent eyesight to legally blind within 7 months Depression and suicidal thoughts followed due to lack of understanding, fear, and no knowledge Created in me a conviction that I would be totally blind

My experience (continued) Dire conversations: “you are going blind but usually not completely, nothing can be done, social workers and white canes and various blind aids for totally blind folks.” Charles Bonnet Syndrome – convinced me I was going mad. Referred to counselling by GP, Freudian approach made it worse not better! Understanding is critical.

In retrospect, what did I learn ? Depression is like any illness – the longer untreated the more critical it becomes. Abundance of information without real understanding and little reinforcement that life can still be enjoyed with impaired vision! At point of diagnosis, language of a positive nature is important. Holistic view of individuals essential – vital to have individualized assessment of support and resource needs

Learnings (continued) Holistic view includes family! Recognize impact on spouse and family. Create a patient-driven support and resource plan. Almost like starting life over and creating systems and processes to create self-worth and independence. I’ve been very lucky to have resources and support. Now I have a life I enjoy!

Life with AMD goes on! I still enjoy gardening I like spending time with my grandchildren I still play golf!! With support and understanding life can be good, even with AMD

Welcome VINCE! Visually Impaired Network for Counselling and Emotional Support Thank goodness you’re here!