The first couple of years that I was a practicing physical therapist, I was scared of everything.  It’s really scary when someone that’s already in a lot of pain and coming to you for help tells you that the exercises that you asked them to do caused more pain.  That’s a scary thing.  That’s when confidence and experience become critical.  Now, I only have 4 years of work experience so I don’t want to give the wrong impression but that being said, I kinda know a lot and I was really good at what I did.  I only have 4 years of work experience but I have personal experience now that most health care practitioners with decades of work experience don’t and never will have.  It took a few years after getting a lot of good results with people to have the confidence to say to someone “I know it hurts a little more or in a different spot, that’s ok.  Keep doing the exercises and I promise you’ll feel better.”  That wasn’t always the case of course but I knew what to do and how to deal with it after a while.

When I got sick, and when I was doing inpatient rehab, I could have done a whole heck of a lot more than I was asked to do.  But I’m sure my therapists were absolutely terrified of me.  First of all, I was the youngest person in the stroke unit so that alone probably scared them.  I was bald, I had an enormous scar on the back of my head, I was shaking uncontrollably due to my tremors and ataxia, I could barely speak.  I looked like absolute, utter hell.  So I’m sure they were scared shitless and were terrified to ask me to do any real exercise. It’s not their fault, it’s what they were taught and how they’re told to treat.  In therapy I was tired as hell because I wasn’t allowed to sleep when I needed to be asleep.  I was scheduled to go therapy based on THEIR schedule, not mine.  I wasn’t AT ALL getting what I needed.

To say that I have a bit of a different perspective on some things than I did 4 years ago is an understatement.  Neuro rehab is really messed up right now.  The things I described above are why we need protocols in stroke rehab.  Many, many, many stroke survivors that I know have said things like “it seems like no one knew what to tell me to do.”  It’s true, therapists don’t know what to say to you.  Don’t get me started on neurologists.  I’m supposed to take aspirin everyday, well I asked 3 different doctors how much aspirin I should take and got 3 different responses.  One extremely arrogant neurologist that I went to told me that the fatigue I experience is not a result of the stroke.  Jesus, what an asshole.

I could’ve done a lot more but the PTs were afraid to have me do stuff.  I get it.  I would have been afraid too.  I blame the doctors and researchers for not knowing a GD thing when it comes to stroke rehab.  That confidence and experience that I mentioned up above does not apply when it comes to rehab after a stroke.  It just doesn’t exist because there is no standard of care in stroke rehab whatsoever.  As an orthopedic PT, I would get protocols every day about how specifically my post-op patients should be treated and when they should be asked to do certain things.  Nothing like that exists for stroke rehab.  Nothing, not even close.  Don’t have a stroke in the next 20-30 years.  Hopefully by then some standards of care will be set in place and then you can have a stroke, no biggie, but not in the next decade or two.

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

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20 replies

  1. My PTs and OTs were afraid to push me to even get anywhere close to tired. They should have brought out the whip. Stroke recovery is damned hard work and the therapists are not teaching survivors how hard they are going to have to work to recover. They really should give patients manual counting clickers and tell them that you are going to need to wear out 3 of them for each movement you plan to recover.

    • Yeah, after 2 weeks, I think Peter said at about 2 weeks, you can safely do all the exercise you’re capable of but therapists are afraid. You can’t do anything that first week, I mean the doctors completely ignore you so why should the therapists have the audacity to think that they can do anything?

    • Disclaimer: I’m brain-damaged so don’t listen to a word I say.

  2. Dean, but even if someone DID use a clicker, there would still be no numerical goal to aim for. Why? Because no one has any F’ing idea how many times we have to attempt a movement.

    Amy, nothing was demanded of me either. I was warehoused until my time was up, except for the times i was asked to do complicated shit i just couldn’t do.

    i had no fatigue, but no one told me to repeat trying to do something during all my downtime.

    One treatment was using a Bioness on my arm. It worked fine as getting my hand to run through the motions, but it was for about 20 minutes a day, and 20 minutes a day of any therapy won’t have an effect (except: meditation, I suppose).

    And get this: when I used the Bioness, the therapist had Tom “drive.” I was too stroke-addled to do it myself, must be.

  3. I dunno Amy. My therapists had me up and out of bed within a week after my stroke but I wasn’t bald due to brain surgery either. It helped that my therapist knew me before my stroke also. They knew I was a hard worker for results. I would give it all until I couldn’t go any more.

    The rehab unit was different. Nobody knew me, but they learned fast. They offered me extra sessions even on weekends. The therapy room was open on off hours to allow me to work when they were not there too. I took advantage of my down time and when I couldn’t sleep. Yes, I tired easily, but I rested and worked again.

    As far as therapists that don’t know me and are sacred of me, I think intimidated is more correct wording where I am concerned because I know my way around therapy from decades of being worked on. I know it’s all up to me.

    • If I was offered extra sessions at the time I would have said no. I was just so unbelievably miserable and wanted to be dead so I just didn’t care, I just wanted to sleep. Or die, I would’ve been fine with either one.—–This is obviously another big problem that needs to be addressed. The complete misery of some of these patients that make them just not give a shit.

      • The thought of wanting to die was in the recesses of my mind, but the fact was I didn’t. If I wasn’t going to die, then I better get off my duff and do what I could. I guess my brain is just wired differently.

        • Me too. I was SOOO happy that I was alive. When the psych ladies came in and told me i was or would soon be depressed i said “no way, im alive, i can work on all this.” I just wanted to hurry up and get better…. Never imagined I’d still be working on any of this 4 years later.

    • I was actually up and walking with an AFO pretty quickly, but was supposed to go everywhere in a wheelchair, instead of practicing walking. In fact, I was supposed to be using a wheelchair, not walk, when I was sent home. I never did. So, in rehab, I was practicing transfers, not walking. And sit-to-stands. Every once in a while I got to walk 100 feet, especially once I got my fitted AFO, but that was it. And I went up and down a couple of steps, not a flight. More dangerous that way, I think.

  4. I spent 9 days in a Neuro ICU ward and was seen for 15 minutes by a PT and 15 by an OT. My outpatient physical therapist was the only one who believed I could improve, even in the slightest ways.

    • ICU PT is scary as hell, walking in and seeing someone hooked up to all this crap that you’re supposed to move. This is another mentality that needs to change.

    • I was only in Neuro ICU for 4 days, but they wouldn’t let me do anything. The nurse in me was very nervous about developing a pulmonary embolism or a blood clot in my leg. I kept bothering them to help me get up to walk, but they insisted I couldn’t. They were right, but I wanted to try with all my might. I got pt/st assessments there but no therapy in NICU.

  5. My experience was completely different, but my circumstance was different too. Since my surgery was scheduled, I did an enormous amount of research on surgeons, facilities, and rehab. Barrow’s Neurological Institute is one of the best in the world. I was in very good, competent hands. They knew exactly what they were doing. I’m guessing they have protocols and all that. They built in naps in my schedule because they could see me fall apart as I fatigued. They sent in the neuropsych people and told me and my husband that I would probably become depressed if I wasn’t already….but thankfully I never was. I was very scared to leave their top notch care and give rehab a go at home (we had traveled out of state for my surgery). And as it turned out, the first rehab team at home sucked!! They didn’t know anything. The care I got at BNI was nothing short of amazing. I bet if I got to stay under their care, I would have seen the elucive and rare “full recovery”.

  6. y rehab started as outpatient once I was discharched from the hospital. All efforts were on getting me walking independently ewhich took about 6 weeks of outpatient therapy. I was set on returning to work so needed to be able to walk to do that. I did not leave using a wheelchair ever. I never used a wheel chair at all; my walking was ugly to be sure. its much improved, but I wonder if i’ll ever be able to go caneless. I’m a bit stuck right now. Marta

  7. Marta, according to my physiatrist (and I agree) the biggest impediment to me going cane-less in public (I already do around my house), is my unaffected knee; because of its arthritis, I can’t step up/down a curb/step without a cane. Eventually I’ll need a knee/patella replacement, which scares me because I won’t have even 1 “good” knee to use going up/down stairs. Unless my affected leg gets strong enough to be the “good” one.

    As for being stuck, where/how are you stuck?

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