Deans' stroke musings: Spasticity Alliance

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, June 14, 2016

Spasticity Alliance

With all these members they should easily be able to CURE spasticity, not just treat the symptoms. If they

don't tackle curing spasticity as a BHAG(Big Hairy Audacious Goal)

Then they are completely fucking worthless.

Up to 43% of stroke survivors report spasticity. (655,000 *.43 = 281,650 a year)

50% of TBI patients develop spasticity. (1,700,000 *.5 = 850,000 a year)

78% of multiple sclerosis patients develop spasticity. (400,000 *.78 = 312,000)

80% of cerebral palsy patients develop spasticity. (10,000 * .80 = 8,000 babies a year)

78% of SCI, spinal cord injury patients develop spasticity. (259,000 *.78 = 202,020)

They don't give total numbers but it is a lot. Est. 1,653,670

http://spasticityalliance.org/

The goal of the Spasticity Alliance is to:

Provide a clearinghouse of best-of-class patient educational tools and resources
Act as the go-to source for spasticity-related conditions
Increase awareness of spasticity
Address the onset of spasticity and its symptoms
Offer management options which can include a combination of medications and therapies
Empower patients and caregivers to discuss their symptoms with their healthcare professionals
Build a strong alliance of patient advocacy organizations to create a united voice for spasticity messaging, tools and resources.
Nope, a complete waste even setting this up, just thinking in microscopic terms.
Does no one ever talk to survivors or anyone with more knowledge of spasticity than whomever set this up?

Deans' stroke musings