Rehabbing stroke survivors needs to change.  Not just stroke survivors, people with any kind of brain issue.  Something needs to change.  I don’t know what yet but something needs to change.  I’m not happy with some of the care that I received and every single person that is part of this online stroke tribe(credit for coining ‘online tribe’: Barb) that we have created is not happy with some aspect of the care that they received post-stroke.  This SHOULD NOT be the case.  That actually makes me kinda sick.  The time that I spent in the hospital I was incredibly vulnerable and miserable and not able to speak for myself and not comprehending everything properly and I wasn’t treated right.  And I wasn’t treated right in the absolutely critical 5 months following my month-long stay in the hospital.  That’s not ok.  I just realized the impact that I could possibly have on neurological therapy.  I’m a PT and I had a devastating, horrifying, life-altering, tsunami-like thing happen to my brain.  At the age of 30.  I write a very popular and influential blog.  I have a lot of friends who are extremely intelligent people who are dealing with this.  All of these things combined well………

One thing that I know needs to change dramatically is when patients with brain injuries are allowed to sleep.  A search term today was “is it good for a stroke patient to do a lot of sleeping?”  The answer :  YES!!!!!!!!!!!!!!!!!!!!!!

Right now inpatient therapists are on like a 7am to 5pm schedule and traumatically brain injured people are supposed to conform to this schedule.  Yeah no.  It doesn’t work.  People that have just been traumatized to the brain need to sleep A LOT and WHENEVER they want.  You want a better recovery for your patient?  Well do you?  Then let her sleep.  The brain heals when it sleeps.  Sleeping should be the #1 priority and therapy should happen when the PATIENT is awake and ready.  Sleep comes first, rehab second.  I remember when I was in the hospital(for a devastating brain injury) that an OT would come into my room every morning at 7am and wake me up saying “rise and shine!”  I never wanted to hurt someone so bad.  If I wasn’t nearly locked-in that OT might have been physically harmed.  The salaries that are given to therapists are kind of pathetic(at least in Pittsburgh) and it’s most definitely not enough for me to have, prior to this event, work late hours or overnight.  So one change that NEEDS to be made is higher salaries for therapists so that they’re willing to work crazy hours to conform to the PATIENT’S sleeping schedule.  These patients absolutely SHOULD NOT have to conform to the therapist schedule.  It should be the other way around.  People that have just had something like this happen CANNOT be expected to be on any kind of schedule.

Oh and all of this needs to happen.  Some of this has nothing to do with therapy/rehab but whatever.

Categories: Brain stuff, Health, Recovery, Rehab, Stroke stuff

Tags: , , , , , , , , ,

23 replies

  1. I am with you 100% on this. The only thing inpatient rehab did for me was to waste those precious early weeks when recovery is easiest. I was sleep deprived and starving because I was woken up constantly and had to eat on their schedule instead of when I was hungry. I was cold all the time because the thermostats were set for the comfort of the staff, not the patients who couldn’t move much. I cried constantly because I missed the comfort of my animals. They did not allow any animals, even certified therapy animals. They kept trying to give me pills which I kept refusing. What I needed was meditation but they only had pills. Nothing got any better at all until I was home. This needs to change. You can count on me to stand with you.

    • Yeah, I was woken up at all hours of the night because this bitch of a nurse who would just turn the lights on and draw my blood without saying a word to me. Oh how I wish I remembered that nurse’s name.

  2. But before allowing you to sleep they need to train you in lucid dreaming so you can rehab while you sleep. I had to move my statins and anti-depressant from evening to morning and then I was able to dream again.

    • I don’t dream anymore, I can’t remember the last dream that I had.

      • Something that I didn’t like neither was when the Dr. showed up with his soon to be doctors and treated my husband like an idiot. Yelling at him Michael show me two fingers! Stick out your tongue, etc. he developed neumonia when he was about to be discharge because some nurses weren’t doing their job sucking out all the mucos. Is like this people forget how vulnerable the patient is, they are so cold and I can keep going and going, I am with you Amy something has to be done.
        By the way my husband also tells me he doesn’t remember having dreams.

        • Yeah shit needs to change….BIGTIME.

        • One ofmy better days in the hospital, was when one of my dcs came in with his students all staring at me like I’m a lab rat & he asked a few questions that I didn’t feel like answering so I just sat there staring silently I’m not a lab rat! But he sent me for an MRI which came back normal, he was scared I’d had another stroke! Every facility or hospital I was in insisted we all be up by around 7AM,but I wasn’t sleeeping through the night,so when they came in I was grouchy. My OT said I was the best sleeper she had seen, but theey built in back to bed time for me! I agree we shouldn’t work around them

      • I didn’t dream for the first 2.5 years. Then I started dreaming on occasion. Now, almost 3years, I dream only when I’m sleeping really well, maybe once or twice a week. If I’m overtired I sleep terribly. When I get enough sleep, and sleep well…I feel almost “normal”. Always trying to recreate the magic! I’m sure having a newborn in the next few weeks will be really helpful in the sleep dept. 😉

        • Haha yeah that won’t help at all. And you have a toddler. My friend is due on Christmas Day but thinks she’s gonna go early. She said she can’t see him waiting that long.

  3. I thought it was just me…. I was sleep deprived for the Four months I was in the hospital. Fortunately I encountered only a few nurses and therapists who had no sympathy for me. Once I did come home, I did sleep a lot and still after a year and a half sleep 8 to 10 hours a night. Once every couple of weeks though I can’t sleep at all. Not sure what that is all about…maybe lack of exercise. I just bought myself an adult tricycle.

  4. I sometimes had 10 minutes in my room between therapy sessions and I would fall asleep. I did once fall asleep in a speech therapist session.

    • I would fall asleep in between therapies too. I think I figured out what I wanna do with my life. I want to open a neurological rehab facility that does all these things so that people actually have a chance of recovering. And I don’t want to involve insurance companies in this, everyone that comes would have to pay out of pocket.

      • I’m sending you an email on Billy Ethridge trying to start a non-profit.

      • This is exactly the type of healthcare reform we need. Take the bureaucracy and the “suits” out of medicine. Get the patients actively involved in their care, let them seek out the best care around not based on some list that the insurance companies are in bed with. Allowing the market and the consumer decide what is right for them. When medical doctors/facilities begin to be rewarded for good outcomes….they will become more competitive and patients will get better care. The crappy ones will disappear because they can’t make any money. Patients will have access to services that are not reimbursed now, like k. yoga, etc. Eliminating insurance companies is the way to go. Even now, it’s happening with the “boutique” practices offering services at cash only. We spend a lot of $ on healthcare for our family not because we have lots of $ but because it’s very important to us to get the best care possible. My vision rehab was cash only and very expensive…but worth every penny. I saw several other providers that were cash only as well. We spent almost all our savings on my rehab, because you only get one chance to rehab and a lifetime to live with the outcome. If I could find someone to fix my fatigue, I would pay almost any price. I think your idea is amazing and hope to see it come to life!!!

  5. I agree that the insurance companies are best left out of it. But how about having a foundation that would raise money to help cover some of the cost for people who couldn’t pay out-of-pocket? I think it would also be interesting to have someone who’s job it was just to look at data, to actually prove that your method of rehab works better. That would be huge. Essentially that’s what Taub has done in Birmingham.

  6. Another change that could happen, but much more simpler, is for stroke survivors to volunteer to meet new patients at their local hospital. It’s not just important, it’s crucial. Many times the only person a new stroke patient trusts is another stroke survivor, because he/she is the only one who knows what they’re going through. Moreover, only a stroke survivor can be a true advocate for the patient, since hospitals just have no idea what the patient is going through. Finally, only a stroke survivor can really prepare the patient emotionally for what may be in the future—no one else even tries. So, I urge everyone to volunteer. Help is desperately needed now. Be prepared though, it’s one tough and emotional ride.

  7. Completely agree and sympathise.

  8. I also fully agree, Amy.

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