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, January 12, 2016

Patient research provides suggestions on care after stroke

The positive communication on your recovery from your doctor should be that they know absolutely nothing about how you will recover or even what you should be doing to recover. There seem to be no public stroke protocols on recovering anywhere.
http://blog.heart.org/patient-research-provides-suggestions-care-stroke/
Doctors who work with stroke survivors should acknowledge uncertainties and empower their patients with positive communication about stroke recovery, according to stroke survivors who participated in a study published in Circulation: Cardiovascular Quality and Outcomes this week.
“Healthcare providers often measure our recovery with functional status assessments and activity scales, but what these metrics cannot quantify is the tremendous loss felt by the driven career women, the supermom and super wife or the free-willed adults that we all used to be,” said stroke survivor Lesley Maisch. “Our strokes have not only changed how we live, but who we are. As we grieve these losses, healthcare providers need to support us by acknowledging that the future is uncertain and empower us to shift our focus from what we cannot do, to what we can do.”
Maisch and two other stroke survivors – Brianna Lindholm and Deidre Hannah, are three of the new “patient investigators” for the Patient-centered Research into Outcomes Stroke Patients Prefer and Effectiveness Research led by Dr. Adrian F. Hernandez of the Duke Clinical Research Institute in collaboration with the American Heart Association/American Stroke Association’s Get With The Guidelines-Stroke program.
“Certain Uncertainty: Life after Stroke from the Patient’s Perspective,” describes how healthcare providers can best support stroke survivors by:
  • Managing the balance of hope and expectations;
  • Acknowledging that a stroke “changes not just what we can do, but who we are; and
  • Making the most of communication opportunities with patients and caregivers.

Lesley Maisch
“On each of our individual paths to recovery, we have learned that the only thing certain is uncertainty,” Maisch said. “Medications that are supposed to help sometimes do not. Patients with seemingly similar prognosis recover in different ways, at different paces. We encourage physicians to join us in accepting that the future is unpredictable and to work alongside us, as we navigate the recovery together.”
Some specific recommendations on how healthcare providers can improve care for stroke patients include:
  • Be careful of giving out predictions in absolute certain terms. “Each of us has been told at least once by a medical professional that we would never walk, talk, or eat again,” Maisch said. “Had we taken those predictions to heart, we would have been too discouraged to devote any serious effort to rehabilitation, and we may not have been able to do any of these things today. “Look at opportunities to improve patient communication. Slow down when speaking. Show results visually to help them “see what you see.” Be transparent.
  • Involve the patient in medical research and clinical trials to gain new perspectives on follow-up care and recovery. The PROSPER study, which is a Patient-Centered Outcomes Research Institute initiative examining stroke outcomes, is one such step. “As co-investigators for PROSPER, we are working alongside doctors and scientists to answer key questions about quality of life, depression, and fatigue that have often been neglected in clinical trials,” Maisch said. “While some answers may elude our collective efforts, we are certain that we are progressing toward a new type of medical research that is centered on patient values and needs.”
Those interested in joining AHA Quality and Health IT Research projects please contact ASPIRE@heart.org.

No comments:

Post a Comment