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  • Introduction: Living with Early Onset wit Title SlideHello, I am Duncan Miller; I am a member Alzheimer’s Association’s Early Onset Group in Mountain View, California. Before retirement, I was an IT technical business analyst for financial service companies. About two years ago I was felt as if something was wrong and I ended being diagnosed with Early Onset dementia. Tonight I nave have with me Dr. Elizabeth Eerily of the Northern California chapter of the National Alzheimer’s Association. My talk is about living with Early Onset and why “The first Six Months Are the Hardest”. I am traveling down the same path as all my peers before me. Because of my nature, , I have spent more time trying to understand the big picture as well as just getting on with my l life. I do have opinions and they are my opinions. In the next few minutes, I hoped to give sense of my life live with an Early Onset diagnosis and explain why the first six weeks are the hardest> At the end, I have project suggest that could make a difference Click   2 Thank Y
  • I ame going to introduce you to three of my companions on the on the same path. Last Valentine’s Day, the Mountain View technical staff set up a booth where we could create “Thank You videos “for our Care givers’. Here Jeff, xxx and xxxClick We are your neighbors. We are doing the best they can with what we have. We will be interested if you have a products or services that will make our life better. Click
  • 3 The first six monthsMy first six months of living with Early Onset involved dealing with a great number people that would impact my future . Doctors, Lawyers Finical folks and the government rules and defined my r world. My family and friends automatically readjusted their relationship. Before my diagnosis I was assumed to be a competent adult. The day after the diagnosis, I was assumed to be a patient with a caregiver. After diagnoses if I look and sound like a competent adult there is a chance that I would will be denied government assistance. Sometimes I have trouble finding words and you I talk less. The result is that old friends drift away or I drift away from them. Some in my r family will resent the extra attention I get. Others just think I am faking it. Being diagnosed in California means my first pill prescription spends my driver ‘and have wait it a month or so to see if I can pass the test or never drive again. Most of all my caregiver gets a new full time job on top of their existing responsibilities. It starts to feel like you are stuck in a glass compound. I can see your old world around you, but there are no “get out of jail free “cards to be found.I do not belong in my old couture any more. . Over time I am learning a different culture so that you can live more comfortably in a more limited environment. It is not all bad. You can do new things. Now is the time to get into better shape than you were in high school. I change my diet and start eating the things that were good for me. It took me a couple of years but I went from 230#s to 183# The crazy stuff does passes. I am slowly rebuilding my new social community. Keep as many old friends as possible and make some new friends. You cannot go wrong by checking in with your local Alzheimer’s Early Onset group. Click
  • 4) BackgroundI volunteered for this talk because I have a unique view of the process. About four years ago my family went through some very difficult times. My sister and I became responsible for my Mom, Dad, and depended brother. We started from a standing start and make it all happen. Things are stable now. Because things happened fast, my sister and I could see all the steps, experience the major emotional states and learn how the all the independent events rolled up into the big picture. It was quite an education.  
  • . 5 Follow the MoneyAsk questions about benefits and costs of recommendations... Understand what you are purchasing and how it is being paying for.All organizations need to keep the lights on and pay the bills. It is entirely reasonable that you are offered a range of options for a serve. It is easy to over buy when you are or unsure. It is very easy when your insurance is paying most of the costs. Plan ahead. Do not be surprised when you see your bill.This is also the time plan your future . It is possible that you will live between 20 to 30 more years the financial decision you make now will be with you, your family and possibly your grandchildren.  
  • 6. It is also the time they you know the least and need to know the most. The whole effort feels like series of one off events as you are passed from one specialist the next. Each expert does their part correctly, explains their specialty s and passes you on to the next expert. . The only common point was me and I was the only amateur. During the first six months, I made some big I decisions about medical insurance, 401k Allocation college funding. I considered moving to a lower cost county, reviewed the family Estate Plans. About six month out I realized that I had made the key decisions and I would have to live with them. When I was all done, I realized I that I ever had a game plan so I decide to reverse engineer the process.
  • s7: There is a logical pattern. There are many details and sub details, but everything falls in into three parts in this diagram. In the pink section, First you know something is wrond and you look to your doctor for answers. Your runs a simep test and referes to to a In the Neurologist. In th blue section, the Nuroligs identifies the problem and requests tests to make sure it it is the diagnose is accurate. And signs off on your EDD payments. . In the green section, your are “on you own” to redfine all you life plans to deal with the new conditions. “Good luck Charlie” This is where someone could make big difference in our lives,
  • The best surprise is no surprise. What we need is “The missing manual” Put all the information together and organize as it through the eyes of the diagnosed and their families. We could see what is coming and make better choices.
  • Thanks for your attention

Transcript

  • 1. Living withYoung Onset Alzheimer’s The first six months are the hardest Duncan Miller MountainView CA Early Onset Group Aging 2.0 Stanford Center for Longevity Design for Cognitive Impairment
  • 2. LocalYoung Onset Group Members ShareThanks
  • 3. Living withYoung Onset Alzheimer’s
  • 4. My background
  • 5. Managing the Money
  • 6. The First Six Months are the Hardest
  • 7. There is a logical pattern
  • 8. The best surprise is no surprise! https://sites.google.com/site/earlyonset/
  • 9. You Can Do It! Thanks for taking the challenge! Alzheimer’s Association Northern California and Nevada Chapter 1060 La Avenida Street, MountainView 94043