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.
So the day after a stroke, how manny of us were cognitively intact enough to ask or even think of these questions. I don't think I even knew I was paralysed. I think i only realized that when I went to the rehab hospital, and my mother came in and told me.Eventually I got to the stage where it was obvious to me that none of my treating doctors were doing anything to get me to recover to what I had been. And I became aggressive, demanding that they do something. My neuro surgeon fired me, and I was quickly told I could go home. No medical person wants a stroke victim as a patient if they are not satisfied with the very poor recovery they have made.
ReplyDeleteI figure it is better to tell your stroke medical providers they know nothing about recovery because that might get them thinking about how to get survivors recovered. That's paying it forward so the stroke followers get better service.
DeleteMost stroke doctors did their medical. training 40 years earlier, and they are still working on what they learnt then, - can't cure brain damage, get the patient to "accept" that their life has changed, and send them home for their kids to be their carer. they do not want a patient who questions their "expertise" Many times I have often thought, if only those patients who had a stroke in the 40 years before I did, had not allowed themselves to be beaten in to Acceptance, but had kept on demanding a cure, then, when I was unlucky enough to have a stroke, when I was 38yo, there just might have been treatment and therapy that would have enabled me to recover enough to go home and back into the perfect Life that I had back then.
DeleteHow many of us were cognitively intact the day after our stroke to be able to even THINK about how we are going to be able to recover? I think I did not even know I was paralysed until I was transferred to my bedroom at Rehab, and my mother told me, I do not remember what she said, and that was @ 6 weeks post stroke. I just assumed that I would get better and go home, because, in my experience that is what happens when people end up in hospital. They recover and go home and back to their Life. I figured that the nuisance physio was just to help me recover faster, and my thoughts were that I would rather let nature "take its' course" and leave my body to recover by itself than having to do these difficult and tiring exercises. Eventually I started asking what techniques they were going to use to get me to recover, soon, so I could go home and back to my Life and jobs. There was a lot of ducking and weaving, and I was treated like a senile old lady and given the pats on the shoulder and sent to the neuro-psyche. Eventually when I became aggressive, and told my neuro surgeon, who I thought was my neurologist, that he should have let me die instead of 'saving my Life", he fired me. I was also told that I could go home to my "caring" partner and parents. Eventually, after I went home (I had by that time learnt to ambulate independently) I realized how to walk properly, and it took a long time, and would have been a lot easier if they had told me FROM THE START, to try to hold myself upright with my shoulders back and head up, because that would throw my weight back onto my heel, instead of the ball of my foot.
ReplyDeleteSo yes I agree they have NO IDEA how to 'cure" a stroke victim, and they are not interested in trying because that would mean they could not coast along on what they learnt at med school 40 years ago. It is a lot easier to stuff us full of BP meds, cholesterol tablets and antidepressants, because they are a proven cureall for everything, and if we are still depressed, well that is our fault because we have not "Accepted" that our life has "changed", not been destroyed, just " changed".
I have a fair idea that if HBOT was given as soon as the patients was able to take it, rather than 3 years later as I did, then the outcome for many would improve. i would like to be employed in a stroke ward, and be able to tell the doctors and therapists everything they are not doing or doing wrongly, that is hampering the patient from recovering to at least 95%. I would have been happier with 95% than 60% as I was sent home with.