This is because no stroke survivor ever recieves a specific diagnosis and without a diagnosis there can be no comparison of therapies to see what works. All the medical establishment hopes for is that the penumbra recovers in time and that will be enough for ADLs.
Yes, but aren't people diagnosed with specific disorders after a stroke. For example, aphasia?
Maybe some have been diagnosed with aphasia but that is a symptom of the problem, which is damage to a specific area in the brain, either it is dead or damaged in the penumbra.. I don't think you will find a single survivor that was told that this particular area in the brain was damaged. In my case i was told I had a stroke with obvious hemiplegia and hemiparetic affects, but I was never told that 2/3rds of my motor cortex was dead and all of my pre-motor cortex was dead. Without that knowledge no one can compare their stroke therapies to anyone elses. That is why first person accounts sound wonderful because you project yourself into their shoes and hope the same effort will provide the same results. I have yet to see a personal account that described the damaged areas in detail.
The main bias against severe stroke survivors goes back 2400 years to Hippcrates time. ‘It is impossible to cure a severe attack of apoplexy and difficult to cure a mild one’ . Until survivors take over the research and strategy of rehabilitation I don't see this changing.
As a speech pathologist that works in neuro-rehab, I am disturbed by your comment of receiving "little or no" therapy. It's difficult to really give you answers, without more information. Often after a 'severe" stroke, when the patient is in the acute stages, they are not able to participate in therapy and may have more medical issues at the time that prohibit therapy.
Please provide more information and maybe it can be explained more clearly.