Iris' Story part 2: What I learned from Mimi S

That would be Mimi Steffen, an emeritus member. Mimi was one of the first members I met on the board. She was in her 80s and had a diagnosis of Alzheimer's Disease. She was also a myasthenia Gravis patient. Mimi gave us hope. She wore a bracelet, "A Reason for Hope" and she sent me one. In those days, there was no hope for PWDs. The thinking was, your life was over. Just let nature take its course. Give up. Mimi gave us motivation for living. She gave us motivation to take charge of our lives, as best we could. She was a role model for us, because she lived what she told us.

Mimi believed in independent living, we do not have to move in with relatives. Mimi lived on her own for many years in a town in Pennsylvania. She wrote two books after having dementia. She was interviewed for a PBS program about living with dementia. Mimi vigorously promoted Best Practices as a way to improve functioning and to prolong the early stages. Mimi promoted socialization in small groups or one-on-one. Mimi encouraged vigouous exercise. Mimi encouraged learning about Alzheimer's Disease, especially the diagnostic process. She wanted us to read the book, The Alzheimer's Action Plan, by Gwyther and Doraiswamy. Mimi encouraged getting involved with the local Alzheimer's Association chapter, also getting involved in a clinical trial if possible. Every April there was an Alzheimer's Association convention in Washington, D.C., and Mimi encouraged members to visit their state's representatives to advocate for more funding for research for Alzheimer's Disease.

Mimi believed in making use of the memory medications, if tolerated. She also gave guidelines as to when to stop medications. At a certain point, she planned to stop all medications and interventions. Mimi had children but didn't want to live with them. With the help of her son, she investigated assisted living facilities close to where her son lived in Colorado, and made plans to move there when the time came. She was proactive and made her wishes known. Mimi was one of the main persons who motivated me to fight for my life and to change my perspective on having memory loss when I was in a deep depression. If you Google search her name, Mimi Steffen, you can read her own words at the PA General Assembly.

Iris