Annual Picnic

we got together for a picnic

2019-July-20 -Pot Luck social!We originally planned to meet at Peter’s house. Too many people wanted to come (over 30) and the weather was too hot. So we made an executive decision (totally out of character for us) and asked the Mason Center to let us use the usual meeting room. Much food,lots of noise.Our photo shows many of the usual suspects. The other 15-20 people? As a telling example of our great skill at public relations (not) we failed to whip out a camera until after the cleanup was mostly done and many folk had left.

Notice how many are obeying Steve’s injunction to “Stay Vertical!”

Foundation for PN President Lou Mazawey joined us and talked about the ongoing lobbying effort to get access to the DOD research grant process. [Flash Lobbying update!: FPN staff is telling us that the relevant portion of the budget request has been approved, with PN included. Like all Congressional activity, presumably there are more steps in the process to come before we can actually approach DOD with research funding proposals. Nevertheless, that means at least SOME legislators have now heard of PN. Yeah us! Of course, none of them will publicly admit to actually having it themselves. Maybe tomorrow.]

–Topic Interest Survey: We had the party goers pause talking and eating 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 caregiving20 – Medicare restrictions on Physical Therapy
  • 19 – Types of PN18 – 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)
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