Use the labels in the right column to find what you want. Or you can go thru them one by one, there are only 34,245 posts. Searching is done in the search box in upper left corner. I blog on anything to do with stroke. DO NOT DO ANYTHING SUGGESTED HERE AS I AM NOT MEDICALLY TRAINED, YOUR DOCTOR IS, LISTEN TO THEM. BUT I BET THEY DON'T KNOW HOW TO GET YOU 100% RECOVERED. I DON'T EITHER BUT HAVE PLENTY OF QUESTIONS FOR YOUR DOCTOR TO ANSWER.
Changing stroke rehab and research worldwide now.Time is Brain!trillions and trillions of neuronsthatDIEeach day because there areNOeffective 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.
Showing posts with label 21st Century Cures. Show all posts
Showing posts with label 21st Century Cures. Show all posts
Several years ago a father approached me, concerned about the
care his son was receiving. The son had been in a car accident that left
him with severe brain injury. He was placed in a nursing home, and his
dad stopped by regularly to check in on him. The father feared his son
was being ignored or, worse, left in pain or distress.
I could feel the love he had for his son – and his hurt. His boy was so vulnerable.
Over the past two decades, I have worked as an academic physician in
the field of neuroethics, focused on advancing the care of patients with
severe brain injury and bringing the fruits of neuroscience to a very
marginalized population. I have chronicled my work, and that of my
colleagues, in “Rights Come to Mind: Brain Injury, Ethics and the Struggle for Consciousness,”
which was published by Cambridge University Press in 2015. To write
that book, I interviewed more than 50 families who have been touched by
severe brain injury. Their stories of incredible highs and lows take
them to the edge of endurance. What they have told me would make you
weep.
Yet now, with the last-minute passage of the 21st Century Cures Act
in the prior Congress, there is something more we can do for patients
with severe brain injury because it provides US$1.5 billion for brain research.
Through the National Institutes of Health’s Brain Research through
Advancing Innovative Neurotechnologies (BRAIN) Initiative, the 21st
Century Cures Act can bring to life additional science for this
underserved population.
The struggle for rehabilitation
Traumatic brain injuries account for 2.5 million emergency room
visits each year. Nearly 90 percent are evaluated and released (for
example, many patients with concussion), but almost 300,000 with more serious injury need hospitalization.
For those who are most gravely injured, their journey can begin with
brilliant, lifesaving neurosurgical care that would have been lost a few
decades ago when I was a medical student.
In New York state, for example, death rates for severe TBI dropped from 22 percent to 13 percent from 2001 to 2009.
Over that time, doctors began to respond to brain swelling more
effectively by shunting off spinal fluid and even removing part of the
skull to let the injured brain expand and then recover. These
interventions have been a game-changer and saved countless lives.
But after gratitude for a life that has been saved, the truly
difficult part begins. Patients and families face a slow-paced and often
fickle recovery. Tragically, this phase is often made more challenging
by the burden of poorly designed insurance coverage.
Families struggle to get their loved ones needed rehabilitation. If
they do get rehabilitation, it is often too short to make a difference.
Indeed, if patients are too slow to demonstrate improvement, services can be cut off because of stringent “medical necessity” admission criteria, often from third-party insurers.
This cutoff makes no sense. As I argued with colleagues
in the Journal of Law Medicine and Ethics, if we don’t know how long it
takes the injured brain to heal, how do we know the pace is too slow?
In the end, the vast majority are placed in a nursing home or
institution, which is euphemistically called “custodial care.” Fewer than 15 percent of people with moderate to severe TBI get in-patient rehabilitation.
Can rights come to mind?
For years, we thought this was the end of the story. These patients
were deprived of skilled and sustained rehabilitation because we thought
there was no hope.
But in the last decade, neuroscience has made great breakthroughs in
our understanding of the brain and its resilience. With proper and
state-of-the-art rehabilitation, 21 percent of the most grievously injured can achieve functional independence.
That might not seem like a big number, but no one would have predicted
this when these people rolled into the emergency room. But with devoted
care and sustained rehabilitation, this level of recovery was achieved.
From www.shutterstock.com
One of the most distressing realizations has been that many patients
who are thought to be permanently unconscious or vegetative – and thus
ignored and neglected – are in fact conscious and aware. In fact, one study found that two out of every five patients
in nursing homes who have a traumatic brain injury and are thought to
be vegetative were actually conscious when carefully assessed. It is a
staggering error rate, which would be unthinkable if we were talking
about making a credible diagnosis of heart disease or cancer. Recent studies
using neuroimaging of the brain have revealed this powerfully in
patients who appear vegetative but are in fact minimally conscious. For
these patients there is a disconnect between thought and action.
Patients demonstrate conscious responses on their scans but don’t show
external or behavioral evidence of awareness on clinical examination.
It is understandable that the diagnosis can be missed. That’s the
more innocent explanation. And it can be mitigated with more thorough,
and repeated, assessments.
More nefariously, many clinicians look at these patients and assume
that they aren’t there, acculturated by preconceptions and their biases.
Either way, this is consequential and more than just a misdiagnosis.
Labeling someone as permanently unconscious becomes a label and a
prison. These people are locked away from the rest of us because they are mistakenly thought to be unconscious when they are not.
What does it mean to write these people off? What does it mean to
mark a patient as permanently unconscious when he is in fact aware and
in the room? Imagine what it must be like to lie in a nursing home bed
and be ignored as if you weren’t there, estranged from your family and
the broader human community. Could anything be more isolating?
Neuroimaging allows views of the brain previously unseen.From www.shutterstock.com
This is still early research, but the science is incredibly
promising. And this makes the challenges posed by insurance barriers all
the more troubling.
It suggests we cannot think of this as simply a health care financing
question, but something deeper and more fundamental. To me, it’s a civil rights issue
and one that gets to the core of whom we value and who counts. When
these people are misdiagnosed and ignored, they become invisible. I fear
they simply don’t count.
Just as we have worked to mainstream kids with Down syndrome or
autism and worked to better integrate them into society instead of
institutionalizing them, we must do the same for those with traumatic
brain injuries. We need to reintegrate them back into their communities
and develop the tools that will help them recover.
Many people see the 21st Century Cures Act as a boon for medical
research, but I also see it as legislation that will help realize the
civil rights of people with severe brain injury. With new understanding
and better neurotechnologies, we can help patients communicate and
reengage with their world.
The long arc of justice demands nothing less for citizens with severe
brain injury. At a time of deep national division, the care of people
with severe brain injury is something we can all rally around. This
collective responsibility speaks to fundamental American values.
This is the complete reason why the funding for stroke research has to completely change. The US government can not be trusted to provide funds. We are completely on our own to solve this problem since our fucking failures of stroke associations will not lift a finger here. Foundation grants and individual donors will gladly step up to fund research if they can see a strategy being followed. Press release funding is the stupidest use of donor money.
More analysis of this Act that the National Stroke Association approves of. With the NSA not being able to create a stroke strategy I don't trust
their ability to analyze a bill like this. And with no references to why
the bill should be supported, the NSA support is worthless to me.
CardioBrief by Larry Husten
You can compare NSA support to the blistering negative review by Elizabeth Warren. With the NSA not being able to create a stroke strategy I don't trust their ability to analyze a bill like this. And with no references to why the bill should be supported, the NSA support is worthless to me.
Late
Wednesday evening, the US House of Representatives passed the 21st Century
Cures Act by an overwhelming and bipartisan vote of 392 to 26. During the 24-hours
prior to the house vote, over 300 SAN
advocates sent nearly 1,000 emails to elected officials across the country!
Your voices were critical to ensure passage of this bill through the House of
Representatives.
But we're not done yet!
We
expect the Senate to vote on the 21st Century Cures Act sometime early
next week. We'll update you as soon as that vote is schedule. In the
meantime, if you haven't taken action on this bill yet, please take
action here: http://advocate.stroke.org/B09yh8S. If you have already taken action, thank you and stay tuned!
Sincerely,
Mitchell Ronningen, J.D.
Manager, Government Affairs
Failure at a gargantuan scale here.Only small scale crap here. No BHAG Big Hairy Audacious Goal at all. I don't even consider the NSA a stroke association at all, nothing they do seems to be useful for survivors.
Stroke is a leading cause of
long-term disability in the United States and the fifth leading cause of
death. Each year, 795,000 people experience a stroke and there are
around 7 million adult stroke survivors nationwide.
We truly appreciate the action Congress has already taken this year to help stroke survivors.
This is important to me because [personal story]
Of particular interest are the 21st Century
Cures Act(And yet the NSA was not listed among the supporting organizations), which establishes a new tracking system for neurological
diseases, and funding for the National Institutes of Health. These
efforts to foster medical research into the brain are crucial to finding
new ways to combat stroke. For these reasons, I support the 21st Century Cures Act, as well as increased NIH funding and ask you to do the same.
Furthermore, the FAST Act (S.
1465/H.R. 2799), spearheaded by two stroke survivors in Congress, is
important legislation that would help speed up the time it takes to
diagnose and treat patients experiencing a stroke. I urge you to show
you support of stroke survivors around the country by co-sponsoring this
bipartisan bill.
Thank you again for Congress’s support
for the stroke community thus far, and please continue to help stroke
survivors get the treatment and care they need.
I guess we will have to wait for the 22nd century, you better hope your grandchildren live than long.
Or you find some billionaire friends willing to fund stroke research on their own.
“Through the exceptional leadership of
Rep. Upton and Rep. DeGette, the tireless work of the Energy and
Commerce Committee staff, and a robust dialogue with researches, FDA,
NIH, advocates and industry, this legislative draft is taking significant steps
toward creating a strong foundation to spur innovation.”
“The latest draft reflects the tremendous
commitment both of you have to developing this initiative in a bipartisan
manner. You, your colleagues and staff members should be applauded
for the amount of work expended over the past few months to refine and
improve the concepts included in the discussion draft and produce this
comprehensive draft legislation.”
“We commend you for this important
effort to improve the delivery of health care to patients.”
United for Medical Research, which includes dozens of coalition
partners including patient groups, universities, and other industry leaders
listed online here:
“We are grateful for the leadership of
Chairman Fred Upton (R-MI) and Representative Diana DeGette (D-CO) and the
tremendous effort that they and the other members of the House Energy and
Commerce Committee have committed to the process of developing meaningful
legislation on NIH funding and policy.”
“This comprehensive, thoughtful and
bipartisan initiative to examine and update our national research and
development infrastructure comes at such an important time to our
community as life-altering new therapies for Duchenne are now closer than ever
before.”
