I was invited to my 1st conference for Parkinson’s disease today. The emphasis was on the person with the diagnosis; a little different than some I’ve been to for Alzheimer’s. Today I saw physicians talk about managing medications so our Parkinson’s friends sleep better and calming their tremors so they can get through their day. The entire focus of the conference was to maintain the wellbeing and lifestyle of the person with diagnosis. Wow was I impressed! The doctors were concerned about keeping the spirit of the person up and keep them from being depressed. They work on movements so they keep their muscles strong, and they worked on their vocal cords to keep them audible so they don’t become soft spoken. The entire time they spoke TO the person with diagnosis. The crowd was 50/50 -caregiver/patient.
The only time in 8 hours that the caregiver was addressed was during one presentation where the talk was about speech therapy, asking if the spouse had trouble hearing the audible tone of the patient. I loved this because the person diagnosed was included in the conversation which is hugely important. The 14 presenters were mostly doctors who are deeply interested in the patients sleep and speech patterns, exercise regiment, sex life, alternative therapies, and how to make sure they live successfully. They spoke in depth about the patients having a huge impact on how well they live. I witnessed a kinship, a brother/sisterhood among them. Three times we exercised and danced and the crowd of several hundred cheered like they were at a rock concert. They have medicine that help with the disease and help stave off symptoms. The positive energy was palpable in the room.
This past Tuesday I was invited to present my caregiver training program to Dr. Benzi Kluger’s team at the University of Colorado Hospital. They are using a team approach when working with families with Parkinson’s, and wanting to make sure they spend more intentional effort with the caregiver. They currently spend 2 & ½ hours with the patient when they come in for a doctor visit.
I found this to be a striking difference; in many cases, our friends with diagnosis of Alzheimer’s are given a mini mental exam, generally followed by a prescription of Namenda, Aricept or Excelon and sent home and the focus often shifts to the caregiver. These drugs have limited efficacy, but they are all we have. From there we focus on caregiver strategies to utilize redirection skills so the person can live with calmness, contentment and moments of joy. Don’t get me wrong, we do the best we can with our diseases, I just we could be more open and inclusive with our friends with Alzheimer’s. I found this conference to be joyful, energetic and thoroughly enjoyed the sense of togetherness.
Both disease have no cure. Both are under the dementia as disease umbrella. One affects motor skills heavily and the other affect memory heavily. Late in the diseases they almost flip flop. Both can have cognitive and memory issues, and both affect motor skills at some point in the diseases. I wish, wish, wish, we had other options for medications to handle symptoms for Alzheimer’s. If you would like to hear my interview with DR. Kluger and his innovative team approach here is the podcast:
More about Dr. Kluger as a guest on my show:
My guest this week, Dr. Benzi Kluger MD is the Chief and founder of the Palliative Care Center and Associate Professor of Neurology at the University of Colorado Hospital. Dr. Kluger directs the University of Colorado’s Neurology Supportive and Palliative care clinics. These team-based clinics are open to any patient or family affected by a neurologic or neurosurgical condition. The goals of this clinic are to improve the quality of life and reduce suffering for patients and families by helping them with difficult medical symptoms (e.g. pain, fatigue), psychiatric symptoms (e.g. depression), psychological issues (e.g. guilt, grief), caregiver support, spiritual wellbeing and planning for the future. His specific clinical interests include movement disorders (e.g. Parkinson’s disease, tremor, dystonia, chorea) and disorders of thinking and memory. Regarding his care philosophy, Dr. Kluger says “I treat people not diseases.” He goes on to share that he believes everyone has unique perspectives, priorities, strengths and weaknesses that are important to understand in working towards their health goals. Good communication is critical to this relationship, especially his ability to really hear patients and to communicate his thoughts in a way that is understandable. He is open to admitting when he doesn’t have the answers and he enjoys working with a team of other clinicians.