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| Amy Shissler My Cerebellar Stroke Recovery |
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 didn’t always happen 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.
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Wonderful and Right ON! Absolutely not enough known about the #stroke patient experience
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