Window of Opportunity: Living with the reality of Parkinson’s and the threat of dementia

Smashwords Edition

Copyright © 2013 Kirk W. Hall

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, without the prior permission of the author.


Contents

  • Foreword by Dr. Benzi Kluger
  • Acknowledgments
  • Introduction
  • Chapter 1: Crossroads
  • Chapter 2: Life before Parkinson's
  • Chapter 3: The Elephant in the Room
  • Chapter 4: Learning Curve
  • Chapter 5: What's Up, Doc?
  • Chapter 6: Deep Brain Stimulation
  • Chapter 7: Bad News/Good News
  • Chapter 8: Parkinson's and Dementia
  • Chapter 9: Stress
  • Chapter 10: Living with PD and Cognitive Impairment
  • Chapter 11: Choices
  • Chapter 12: Impact on Families
  • Chapter 13: Palliative Care and Neurology: Striving for Justice
  • Chapter 14: Faith
  • Chapter 15: Recommendations
  • Epilogue
  • Appendix A: Technical Information
  • Appendix B: The Seven Stages of Dementia
  • Resources
  • Recommended Reading
  • About the Author
  • Endnotes

FOREWORD

The first time I met Kirk Hall was in November of 2008. In retrospect, I think it is fair to say that this meeting shaped both of our lives in ways that neither of us would have predicted at the time. I think it is also fair to say that it began a relationship that has moved far beyond what I learned about in medical school classes on communication as the "doctor-patient relationship."

I was just four months into my grown-up job as an assistant professor of neurology at the University of Colorado following more than ten years of school, residency, and fellowships. Despite all this preparatory work, I was still very much in the midst of figuring out what I was doing with my career. Still, I was not totally without direction. Having done fellowships in behavioral neurology (the neurology of problems with thinking, memory, and behavior, particularly dementia) and movement disorders (the neurology of problems with motor control, including tremor and Parkinson's disease), I was committed to doing work at the crossroads of these two fields. Being done with training meant that it was now up to me to determine what that further work would look like. I had just started doing research on non-motor symptoms in Parkinson's disease. Although this may sound focused, non-motor symptoms refers to any and all symptoms other than shaking, slowness, and stiffness (e.g., thinking and memory problems, hallucinations, depression, anxiety, constipation, pain, fatigue, insomnia, etc.).

Kirk was also at a crossroads in his life. He too was at the beginning of a journey that would involve the meeting of behavioral neurology and movement disorders. And despite the fact that he did not choose the medical conditions that led to our meeting, he too was faced with the dilemma of how he was going to live his life with them. Kirk was referred to me by the movement disorder neurologists who were taking care of his tremor to deal with his non-motor symptoms, which at that time included changes in thinking and memory, fatigue, and depression. Although I'm sure my notes from that visit contained a wealth of medical information, including his physical examination and neuropsychological test results, I don't think those notes (or most medical records, for that matter) captured what was really important in our interaction as people.

To begin with, the notes imply that I (the physician) am the expert and Kirk (the patient) is the beneficiary and subject of my knowledge. I think one of the many values of this book is that it turns this common wisdom on its head. Kirk lives with the symptoms I read and write about. He is an expert on this subject because he is the subject.