Changing stroke rehab and research worldwide now.Time is Brain! trillions and trillions of neurons that DIE each day because there are NO effective hyperacute therapies besides tPA(only 12% effective). I have 523 posts on hyperacute therapy, enough for researchers to spend decades proving them out. These are my personal ideas and blog on stroke rehabilitation and stroke research. Do not attempt any of these without checking with your medical provider. Unless you join me in agitating, when you need these therapies they won't be there.

What this blog is for:

My blog is not to help survivors recover, it is to have the 10 million yearly stroke survivors light fires underneath their doctors, stroke hospitals and stroke researchers to get stroke solved. 100% recovery. The stroke medical world is completely failing at that goal, they don't even have it as a goal. Shortly after getting out of the hospital and getting NO information on the process or protocols of stroke rehabilitation and recovery I started searching on the internet and found that no other survivor received useful information. This is an attempt to cover all stroke rehabilitation information that should be readily available to survivors so they can talk with informed knowledge to their medical staff. It lays out what needs to be done to get stroke survivors closer to 100% recovery. It's quite disgusting that this information is not available from every stroke association and doctors group.

Tuesday, March 25, 2014

A Caregiver’s Wish List for a National Alzheimer’s Agenda

I just wish we had a national stroke agenda - run by survivors, no neurologists need apply.
http://aja.sagepub.com/content/29/2/111?etoc
  1. Allan S. Vann, EdD1
  1. 1Independent Scholar, Commack, NY 11725, USA
  1. Allan S. Vann, EdD 28 Abbey Drive, Commack, NY 11725, USA. Email: acvann@optonline.net

Abstract

When panels are convened to discuss the best way to deal with Alzheimer’s disease (AD), the panels often consist of representatives from government agencies, national Alzheimer’s organizations, medicine, research, and pharmaceutical companies. Although each of these stakeholder groups has much to contribute to such discussions, too often the voices of caregivers are not heard. Even the National Alzheimer’s Project Act (NAPA) Advisory Council has only one full-time 24/7 caregiver as a member. Of 26 voices heard at the NAPA meetings, only 1 can speak for what life is like for a 24/7 caregiver of a loved one having AD. This article provides 10 items that I would raise at such a meeting based upon my own personal experience and what I have learned from others in my weekly spouse caregiver support group and in my online support groups. Some items suggest funding priorities, some suggest changes in how doctors currently diagnose and treat people with AD and their caregivers, and some suggest the need for more caregiver voices to be heard by government panels and politicians who have the power to effect change.

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