2019-April-6 We had a normal go-around meeting.
- Our speaker on Home Health Care had to cancel. We will reschedule.
- Lou Mazawey, Chairman of the Board of the Foundation for Peripheral Neuropathy, reported on the nationwide email & phone effort (directed by an experienced lobbyist) by it and several foundations and support groups to get some additional PN research authorized.
- Lou’s niece, Janice, an experienced nurse practitioner, talked about how to make best use of a doctor visit:
– Keep a journal of symptoms.
– Make a written list of concerns, give the doctor a copy and talk about important ones first.
– Ask questions, especially about words or things you don’t understand.
– Be honest, don’t minimize.
– Share your knowledge, including what you or others have learned about your conditions. (Including the existence of this group! Handout a copy of the group business card!).
- Janice talked about how she and her family were first anxious and now inspired watching her Uncle Lou dealing with the effects of PN. It’s too easy for patients like us to focus inward and forget that our children and younger relatives are affected by our situation and stories.
- Mike experimented with recording the meeting with a cell phone camera. He hopes to present a report at the May meeting.