Wednesday, January 27, 2016

Every Stroke is Different

Barb Polan
Barb's Recovery
January 21 / 2016

Every new stroke survivor asks questions about “why,” and “how” after having a stroke, along with “when will I recover?” The most common answer to nearly every question a stroke survivor asks, is the content-free “Every patient is different, every stroke is different, and every recovery is different.”

Content-free, I say, because it’s not news that each of us is different from one another. When did we learn that? Sesame Street or kindergarten? And, obviously, any medical condition occurs differently; think about breast cancer – one of my close friends died at 42, while another, my age, is cancer-free 5 years after diagnosis.

Applied to recovery, the answer is content-free because the real answer is, “I don’t know.” And that’s the part that irks me most.

So, parts 1 and 2 are self-evident, and part 3 is a euphemism for “No one knows.” Why is the (“Every patient is different…”) answer so popular?

Certainly, the repetitive phrasing is catchy, which lends a tone of cleverness – which could be misinterpreted as wisdom.

There are two participants in this meaningless conversation – one expert and one student-patient. The expert needs a canned answer to pull out when the inevitable questions are asked, and the patient wants reassurance in the form of a concrete answer, and so, nods in response to the “Different” answer.

An appropriate patient response, though, would be, “hunh?” As in “You actually didn’t just tell me anything.” Yet, not a single patient ever says that. The “Different” answer is rarely perceived as a shrug.

What a patient really wants to know is what to do to recover the body/mind/life that just disappeared. And gets a shrug.

Why a shrug? For starters, for patients with hemiparesis, there is no proven protocol that will re-enable the use of that arm and leg. There are only suggestions – conventional occupational and physical therapies that do not address the fact that the problem is neurological, not mechanical, in origin; imaging; mirror therapy; constraint-induced therapy; and therapy via electronic stimulation gadgets. Not one has been supported in published medical studies as effective at recovering function in hemiparetic limbs.

Most of conventional therapy is getting a patient on the path of getting to be the most independent possible, which means teaching patients how to perform old functions given their new limitations – one-handed life, including dressing, cooking, driving. Patients are taught how to compensate for their loss. But that is a short-term solution, not recovery. The fact is that a compensatory, not a recovered, life is the future for 90% of disabled stroke survivors. That is virtually all of us; with rare exceptions, we all remain disabled.

I certainly don’t mean to be negative – I am generally an optimist, within the constraints of honesty.

Eureka! Maybe medical personnel give patients a content-free answer because the truth would be discouraging.

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