Topic Interest Survey
At our July 2019 picnice, we asked party goers to pause long enough to fill out a survey about their topic and speaker preferences. More topics were added during the discussion.
- We apologize for omissions and overlaps in the topic list.
- Topics marked with * were added during the discussion
- We used advanced mathematical mumbo-jumbo to calculate the relative weights we show (i.e., grains of salt suggested).
The overall rankings seem to make some sense. Some topics on the original list got virtually no votes and are not shown. But individual responses were all over the map, so none of the topics shown should be rejected out of hand.
75 – Staying mobile
66 – What will happen to me? forecasting the progress of my health.
57 – Dealing with decline
56 – * Traveling with PN
51 – State of the science – status of research and treatment of PN
40 – * Psychological strategies for coping with PN and its losses
35 – What family, friends, employees/employers and doctors need to know
34 – Small fiber & large fiber PN: what’s the difference and does it matter?
33 – Walking about: braces, robotic devices
32 – Steps to create and modify a personal exercise program
30 – The nature of lobbying for PN
30 – How to make our support groups work better
27 – hand controls – technology
26 – Using a gym
25 – Why exercise – the under-the-hood logic
25 – How to organize our group(s) to be more effective.
24 – Caregiving activity
23 – Proper use of gym equipment for PN patients.
21 – Psychology of caregiving
20 – Medicare restrictions on Physical Therapy
19 – Types of PN
18 – Dealing with insurance companies, including Medicare
17 – How can we measure “progress” in our exercise program?
17 – Grassroots organizing for PN – what can be done and how to do it
16 – Working with a personal trainer.
15 – * using empathy and love with PN
15 – Home Health care – basics
14 – Dealing with the economics of gyms, personal trainers, exercise classes
14 – Home modifications
13 – Walking: canes, hiking poles, walkers, rollators,
13 – * How to get better sleep
10 – * Spiritual and religious aspects of living with PN
8 – The PN Support Network concept.
8 – * Shoes and podiatry
7 – Home Health care – making your needs and their incentives align
Some topics we forgot to consider. Do better next time maybe
- Pain meds
- Chronic Pain management
- Home layout & downsizing
- Nutrition
- Tracking/measuring progress of the disease
- doctor training and education on PN
- hands-on exercise classes (Tai Chi, yoga, Silver Sneakers)