On My Own

One day a few years ago, I drove to work.  As soon as I got to work my legs stopped working and I fell down.  Something terrible had happened to my brain.  I got to the emergency room within about half an hour.  This is PLENTY of time to have been given the miracle drug tPA and maybe I could’ve been helped a little but apparently the hospital I was taken to is just a place where doctors go to hang out and not help patients.  So after 30 hours of hanging out in the ER, some doctor said, “oh she had a stroke, we should probably do something about that.”  So they life-flighted me to another hospital where the doctors actually help their patients.  But they still tell you that you’re screwed and aren’t going to recover after something like this.  After the first week of nothing at all being done for me, that was it.  The damage was done.  There was nothing anybody could’ve done to help me at that point and my recovery was solely on my own.  I just didn’t know that yet.  I didn’t know that probably for about a year and a half.  Within that first year, I thought my doctors might actually know something about how to recover, they didn’t.  I was on my own.  Completely on my own.  So are you if you want to get back to some semblance of the life you used to lead.  This is why I have some semblance of a normal life again.

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Categories: Brain stuff, Recovery, Stroke stuff

Tags: , , , , ,

16 replies

  1. Come on Amy, doctors don’t have time or ability to learn how to treat stroke. Every survivor will need to get a neurology degree to treat themselves.

    • Dean,
      Lol! No degree needed. You just know you are on your own from the get go and do it yourself. The best thing a stroke survivor can do for themselves is educate themselves by reading as much as possible about stroke recovery.

      • I agree, no degree necessary. Education is all that’s needed. A bunch of letters doesn’t prove you’re educated.

      • Agreed that the patient needs to become educated, but that’s messed up. The person with the effed up brain needs to do the research??? Yep. I couldn’t even read for months after….my eyes were so messed up. I was glad I had done a bunch of research in preparation for my surgery. I had no idea how valuable my recovery research would be.

  2. It sucks that you went thru that! It sucks that most stroke survivors, myself included, come to this realization. I am at the point now where doctors tell me “there’s nothing else we can do!”

    So, I am being left to drift out into the unknown once again, and figure it out, on my own, again!

  3. Based on my own experience there is a huge gap in what is called in the world of mental illness the continuum of care as it relates to stroke and stroke recovery. Neurologists seem to think that anything outside the brain is beneath their notice. Primary care physicians don’t have the specialized knowledge needed to be of help. Physiatrists I think are supposed to be rehabilitation physicians, but the ones I’ve known and read about don’t do anything at all. So that leaves PTs and OTs who do the best they can with the limited time and authority they have. So in my personal opinion, something needs to be created to fill in the gap created by the ineptitude of physiatrists.

    • ^^ yes, Jim. There are way too many people who are supposed to be helping and a humongous gap between those people and physical, speech, and occupational therapists.

      Zack has been lucky enough to go to a facility who has their own neurologist, physiatrist, and TONS of amazing and dedicated therapists in many, many areas- speech/cognitive, occupational, physical, and educational. They also have counselors in their rotation. Zack was able to go to one a couple times a week and they gave me free visits with her as well once a week. It was really a God-send. Though, again, guess who sucked and were so far removed? you got it…the physiatrist! ding, ding, ding! How did you guess? I never saw him once and was there every single day, yet we received bills in the mail, of course. The neuro was okay, he wasn’t terribly encouraging but he also wasn’t a downer. Not super present either, but the therapists–those are the miracle workers. And these guys had a lot of freedom, and all of the most amazing equipment at their finger tips. But, their dedication and attitude is what is amazing, it seriously has made me want to go back to school and become one. Except for that whole doctorate thing. That’s a little daunting with a disabled husband and a 2 year old. Who knows what’s in store…

      • Do you know what the physiatrist even billed you for?

        • he saw zack once or twice. no clue what he actually did, but he got paid for it. 🙂

          • A year and a half ago when my spasticity started cranking up, I went to my PCP, who is really good. He knew about Botox injections, but beyond that, he suggested I see the neurologist who had treated me when I had the stroke. I did, and he had nothing for me, no clue about what could be done. Mind you, this was a neurologist at the biggest university-affiliated hospital in the state, one of the two designated stroke centers.

            As for seeing a physiatrist, I live in a rural area, and the only one I know of works at the inpatient facility where I rehabbed. I was told he is one of the owners of it. He came around most weekday mornings and asked everyone if they were getting stronger. That was it. I think he also prescribed pain medication for those that needed it. I imagine at medical conventions physiatrists are made to sit in the back of the room and don’t get invited to go out to dinner.

            So, we’ve identified the issue, now what’s the solution?

    • TOTALLY AGREE WITH THIS.

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