![\"danny-vl-house\"](\"https:\/\/participatorymedicine.org\/epatients\/wp-content\/uploads\/sites\/3\/2016\/12\/Danny-vL-house.jpg\")
I want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference.<\/p>\nI want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference.<\/p>\n
My wife and I built a house together – the whole house, everything except drilling the well. While building, living in it and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling.\u00a0 Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.<\/p>\n
No wonder that a person’s health team struggles to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel. In its simplest form communication is who, what and how.\u00a0 Who<\/strong> needs to communicate? What<\/strong> do they need to communicate? How <\/strong>will they communicate?<\/p>\n Let\u2019s focus on the what<\/strong>. What<\/strong> are the goals of the person on the health journey? Who\u2019s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?<\/p>\n “What” = #CarePlanning.<\/p>\n For me, as a person with multiple sclerosis, I know that I want to progress as slowly as possible and I don’t want to take anything that will interfere with my pathological optimism. These are my goals.<\/p>\n My biggest challenge is keeping my ability to walk 5,500 steps a day and not fall. I take a medication that helps but interferes with my sleep. I find that acupuncture once a month and massage every other week helps. I exercise to stretch my very tight muscles and keep my core strong so when I stumble (often) I catch myself (so far always). My physical therapist taught me to walk with a cane and had me fitted with a foot ankle orthotic for my foot drop.<\/p>\n I’m accountable to myself to meditate every other day, walk every day, play my horn at least 4 hours a week, take the meds prescribed to me every day, etc.<\/p>\n My primary care doc is accountable to be available to me within 2 business days by portal, make sure I get preventative stuff I need, monitor my lab work, etc.<\/p>\n When I see my neurologist, he has two questions every time: Have you fallen and are you still playing your saxophone? Get the idea?<\/p>\n I have goals and a plan. I monitor and communicate it.\u00a0 I’m the connector for my team of more than a dozen. This is person-centered #CarePlanning<\/strong>.<\/p>\n <\/p>\n","protected":false},"excerpt":{"rendered":" I want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference. My […]<\/p>\n","protected":false},"author":53,"featured_media":0,"comment_status":"open","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"give_campaign_id":0,"_et_pb_use_builder":"","_et_pb_old_content":"","_et_gb_content_width":"","_price":"","_stock":"","_tribe_ticket_header":"","_tribe_default_ticket_provider":"","_tribe_ticket_capacity":"0","_ticket_start_date":"","_ticket_end_date":"","_tribe_ticket_show_description":"","_tribe_ticket_show_not_going":false,"_tribe_ticket_use_global_stock":"","_tribe_ticket_global_stock_level":"","_global_stock_mode":"","_global_stock_cap":"","_tribe_rsvp_for_event":"","_tribe_ticket_going_count":"","_tribe_ticket_not_going_count":"","_tribe_tickets_list":"[]","_tribe_ticket_has_attendee_info_fields":false,"jetpack_post_was_ever_published":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":false,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2}},"categories":[5],"tags":[127,6656,174,2374,68],"coauthors":[],"class_list":["post-19189","post","type-post","status-publish","format-standard","hentry","category-ptdoc-co-care","tag-care","tag-challenge","tag-communication","tag-god","tag-health"],"yoast_head":"\n