Thanks to great promotion by friends at and of IF&D, and an extraordinary 3,000 word profile of my post stroke life by Pamela LeBlanc in the Austin Statesman, a large and motivated group turned out for my third attempt at combining public advocacy for stroke prevention with my own speech and cognitive rehabilitation efforts. The response and support has been almost overwhelming.
As this is a work in progress - refining- no, perfecting this presentation is a therapeutic opportunity for me. Topic is so broad and focus can or should narrow depending on the audience - which to date has been unpredictable. I'll keep working on refining material in three areas of interest based on feedback:
1. common and hidden risks to stroke;
2. best-practice of interventions and ER protocols;
3. public policy issues that warrant attention or eventually action
- Work colleagues who attended talk at Convio on November 13th were struck by and wanted to talk more about the correlation between TIA and Alzheimer's -like cognitive impairments . Several shared actual diagnosis of relatives along these lines or were scheduling doctors visits for a stubborn relative with declining cognitive function I referenced "Stroke and Vascular Cognitive Impairment" article by Vladimir Hachinski.
- The group at IF&D last week sounded pretty fired up about ambiguity of ownership and process driving policies & public information around several stroke prevention issues - e.g. confusion here in Austin as to which Hospital network or which specific facility within a network was a certified Stroke center. See: Seton's press release announcing re-certification of two of their network's facilities.
- I may have fanned the flames of outrage with comments about my personal disdain for Seton's investment in a series of "warm and fuzzy" TV advertisements positioning them as the only hospital in Central Texas offering Heart Transplant service. Perhaps I was overly cynical in suggesting that the message re: where to go for heart transplant surgery appears to be more critical to Seton's interests than communicating how to recognize a stroke or where to go for treating a stroke?
- The issue as to who "owns" or pays for the the media buys of an institution that "earns the coveted primary stroke certification" or what if any public education standards are expected of a JCAHO Stroke center is clearly unclear to many concerned citizens.
- One women was curious to know more about the warnings she was not given by the doctors who prescribed her birth control pills - her TIA was attributed to clotting from the birth control med she had been on. I've seen several references in the literature to correlation between "organic" hormonal changes[pregnancy and menopause] issues revolve around either inflammation in vascular tissue and/or a blood chemistry that increases formation of clots. Can only imagine the chaos induced by synthetic pharmaceutical intervention- and the challenges of getting accurate information to patients making those decisions!
- Families who had stroke history were very eager to stay in touch. I collected several phone numbers with requests to please call my brother Richard etc... heard a common line of question from actual stroke survivors "how long did it take you to.." or "I realized how my [fill in the blank problem was exactly what you said about XYZ."
- One women had a very interesting suggestion: a stroke survivor's group - but with a specific focus on the policy and public education issues . We both discussed how this might present a great therapeutic opportunity - how the individual survivors would feel empowered and motivated by an experience to assert some control or "push-back" against a force that usurped control over their daily existence and pursuit of enjoying life.
- Ironically, of the 3 talks I've given now, this one ran the longest- Yet , almost everyone [ who does not yet know me ] wanted to know when I was giving my next talk???
- Trick now is how to leverage that energy to reach beyond the immediate circle of families of survivors and health care professionals - that's where, me thinks, the philanthropy and or specific political advocacy efforts facilitates the spreading of the message of "enlightened" approaches to preventing disability from stroke.
- footnote: video portrait by Austin Statesman's Deborah Cannon
