Speech Therapy

I had dinner with a friend tonight who brought along another friend.  This friend of my friend’s happens to be a speech therapist.  She knows that I had a stroke and was asking me some questions.  I explained my anger at my first speech therapist and his not teaching me anything about the breath.  At first, she explained to me that education of the breath is lacking in speech therapy school, which is ridiculous.  Then I told her the name of my speech disorder, Dysarthria.  She said “I didn’t know it was Dysarthria.  And he didn’t teach you diaphragmatic breathing?  That’s like speech therapy 101 when it comes to treating Dysarthria.”  The look on her face was one of horror.  I saw this guy for the first 5 months after my stroke which is a CRITICAL period of time for a stroke survivor because those first 6 months are when the most spontaneous recovery occurs and when neurons are coming back “online.”  I’ll NEVER get those 6 months back.  They’re gone forever.  I am very, very angry about this.  You better get ready initial outpatient speech therapist of mine, I’m coming for ya.


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

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41 replies

  1. Arrr!!! That sucks!! My first out pt st sucked too, and I had dysarthria too. Only good thing she suggested was the singing…which I did and it helped in a big way. I fired her still a few months in, she was the worst therapist I encountered. Such a drag others are subjected to her still, and most survivors are probably not skilled to know she sucks. It was sort of a lucky gut feeling I had that she wasn’t good. My first in- patient st was soooo good, I wished I could stay with her, but she was in AZ, where my surgery was, and we needed to come back home to CA for all my out-patient rehab. At least ur on track now. I wish all the irresponsible therapists would be fired or reeducated as to not mess up anyone else’s recovery. My list of irresponsible hcps that gave me wrong, dangerous, damaging advise/care is long and when I get the energy/time they will all get an earful!!

    • Yeah, I’m not looking to affect anyone’s livelihood but these people sure as hell need re-educated. I would’ve wanted to know and be re-educated if I had provided terrible, awful care.

      • My first out-patient team was terrible and I doubt re-educating would help. They tried to convince my husband that I was too brain injured to judge their incompetence. They insisted I needed a psych eval when I called them out and fired them. It was a difficult time, but sooo the right call. They kept insisting I couldn’t get along with anyone, and I stayed firm…no , I just don’t get along with idiots. My next team was amazing!!!! No problems, and a near 100% recovery.

    • Welcome back, Elizabeth. Just because we disagree about pretty much everything doesn’t mean we can’t or shouldn’t engage. Besides we can’t really be held responsible for what we say or do since we are “impulsive” due to brain damage.

  2. After I closer look I like you even more. You’re getting to be like me in the anger department.

  3. I know what you mean by never getting those particular six months back; now when I read about initial treatments that can help (music, for example), I wonder why that didn’t happen automatically; at least it would have entertained me a bit. Plus, the repetition concept. I spent 4 weeks in rehab, and my PTs never have me anything to do when I wasn’t with them; I had hundreds of hours in which I could’ve done – even just TRIED – something, but I didn’t know it was reps that would bring something back.i thought it was a binary thing – on or off. Instead, I spent HOURS alphabetizing Massachusetts town names in my head. That was hard, so maybe caused some neurogenesis.

    I didn’t have any speech problems, so my STs had me work on visual puzzles, like mazes. I didn’t know what that was about, and although I recognized it as a waste of time, my brain was in sheep mode and I just did it.

    • And no one even told you to alphabetize the town name thing, you did that on your own! Things need to change, drastically.

    • I had hours and hours of “speech” therapy when I didn’t have any speech problems. My insurance paid for speech therapy so that’s why I got it. It was a colossal waste. Mental practice for motor recovery was never even mentioned and would have been a much better use of my time and my insurance money. I was medicated for back pain that I told them would go away if someone would just help me stretch but they said couldn’t get paid for stretching so they wouldn’t do it. When I was finally released from that prison, my Pilates instructor helped me stretch and I never took a pain pill again. And we’re not talking tylenol here. I was on NARCOTICS for two months for back pain on my good side because it was so overworked. Turning me into a junkie was okay but helping me to stretch my piriformis was not. I guess we have big pharma to thank for that. The MD in charge of my case also suggested Celebrex for my pain, which has a black box warning because it has been associated with an increased risk of stroke. Calling him a moron is an insult to morons everywhere.

  4. When I told my inpatient therapists that I thought what they were doing was incorrect and wasn’t working for me they told me I was impulsive because of the stroke and told my husband that I wasn’t competent to make my own decisions. They tried to convince him to send me to a nursing home instead of take me home, and wanted to exclude me from the “family meeting” that would decide my fate. All this bullshit ended when I told the social worker that I felt my civil rights were being violated and I was going to call the ACLU. Keep in mind that this crap was going on despite the fact that I had no speech or cognitive issues whatsoever. I guess being able to do the NYTimes crossword didn’t impress them sufficiently as to my mental competence. I was at Burke Rehabilitation in White Plains, New York and the place was an absolute hellhole, a real life One Flew Over the Cuckoo’s Nest experience.

    • Ha! Ha! Yes, I was labelled ” impulsive” too, which they used whenever I went ahead and did something I wanted to do. After a month of that crap, my older sister said, “but you’re so much LESS impulsive than you used to be.” At the time, I thought everyone was using the wrong word: what they really meant was “stubborn.” Yes, was, and am, and always will be.

      • I guess that’s just the thing for medical professionals to say about someone that had a brain injury. Oh she’s just impulsive. Yeah well, if that’s true that impulsion is gonna come back to bite you in the ass bigtime!!

      • Excellent! Stubborn – yes, for sure.

        • When I finally start writing I will name names. And if those named think they are protected by libel laws, they should remember that it’s only libel if it’s false.

          • Sorry Julia, but if the intent is to discredit, it’s libel, true or not.

            • I’m not a lawyer so I can’t speak to the accuracy of Barb’s statement or how it would play out in court. My intent is to tell the truth about my experience. If they don’t like hearing the truth they can sue me. Suing a patient would be an extremely counterproductive PR tactic for a physician or an institution, regardless of the circumstances.

              • I am not a lawyer either. My comment was based on the parameters we used at the newspaper. I was ALWAYS very conservative when it came to issues of libel, especially after a competing paper lost a libel suit EVERYONE thought it would win. On the other hand, libel laws are state-dependent. In Mass., successful exceptions are made for opinion and parody.

                • I believe that the exception for opinion is generally accepted and is not state-specific. Also, the parameters used by a newspaper are probably not relevant to private individuals. Certainly libel suits can be brought even if the published statement is true simply to annoy or harass, but the lawyer involved risks a malicious prosecution charge. If the law was such that someone could be sued for publishing an unpleasant truth, we would no longer have free speech in this country which is not the case. No one posting or commenting on a stroke blog should be afraid to speak the truth, no matter how unpleasant. It’s the only way anything will ever change. When newspapers become more concerned with their own liability than with publishing what is important and true, they undermine their own credibility.

                  • Julia, I agree w your statement re newspapers, but I worked for a small community “good news” paper, and being sued for anything would’ve killed us. That justifiably changes behavior.

            • Barb – I looked up libel – http://legal-dictionary.thefreedictionary.com/libel If the published statement is true it is not libel. Intent is relevant only if the statement is false. If someone publishes a false statement it can simply be a mistake and therefore might not be judged libelous if a retraction and apology followed publication. But a true statement, by definition, is not libelous. People should not be afraid to write or speak the truth.

              • Eventually all of the doctors and therapists that fucked up my life will be named and I don’t give a fuck if they sue me. I hope they do sue me. I hope they do sue their 30 year old patient who had a MASSIVE stroke and they almost killed due to their complete and utter incompetence and uncaring ways. I really hope they do sue me and make that be publicly known. I just don’t care anymore

  5. I know what you mean about never getting those first 6 months back. A fall gave me an AC sep of the shoulder. I could have maybe recovered a lot of my elbow and wrist in that time. But as you say that opportunity is gone forever.

    I had very good therapists during the first month after my stroke and a mediocre OT after that for my arm and hand and a great PT. I agree sometimes they DO need to go back to school. If they don’t work with stroke survivors frequently they shouldn’t start with you especially in the first 6 months.

  6. I wonder if you should bother with going after the therapist or instead go after the department head who oversees and allows (perhaps even condones) such inexcusable incompetence.

    I got no therapy at all for the first 10 weeks. There’s nobody I can go after or re-educate about that wasted critical recovery time. I’ve pointed it out to several, and they just apologized on behalf of “the system”; they seem to think that the fact that my bleed happened on a holiday weekend when they were short-staffed explains it sufficiently.

    They say I ‘slipped through the cracks,’ but when the cracks are the size of The Grand Canyon, how could it be otherwise?

  7. And that so called “department head” even stopped your speech therapy when you still had insurance approved sessions left. He said that all you needed to do was “keep talking” and you would be fine. As you would say “what an incompetent A-hole”.

  8. Hi all, just wanted to ask for some advise. After a year with out therapy my husband finally started getting some last week, they want to use Botox on his arm, he has movement on his shoulder and elbow, he can bent his elbow but can not straighten it back unless he relax, the same with his fingers he can make a fist but takes a while to open back his hand. They also want him back on the happy pill ( depression) but we ( him, his mom and I) do not believe he needs it. But because he has cried in front of the Dr and speech they think he is really depress. What is wrong with showing emotions? He cries because he is happy to be back on therapy and he believes they can help him to improve, besides he is a man who easily cries, more than I do even before the stroke.
    And yes there is a lot of therapist that they don’t do anything to help, I have got rid o some of them, is sad that they do their job with out love for the patient and love for what they do.
    Thanks in advance

    • Hmmmm, I have no experience (as a therapist or as a stroke survivor) with Botox so I don’t know what to tell you about that. I do however have a lot of experience with happy pills and I would advise you to stay the hell away from them.

      • My experience with Botox is that PTs suggest it, but my physiatrist tries to NOT use it. If your husband hasn’t had therapy in a year and no stretching, range of motion issues might make PTs think that Botox will help relax the muscles, when the soft tissue has shortened, and the muscle contraction is the cause, but not the real problem.

      • I’m with Amy. Say NO to happy pills! They turned me into a zombie.

      • Amy, please do a post on your experience with the happy pills, which category you tried, why you now advise against them, and if you got off of them, how you did so, how withdrawal was for you, how you managed it, and how you’re doing that way now.

        I finally gave in to try them, and they are helping me to a degree, but not very much. I dread the withdrawal when I get off of them. The docs and therapists think I’m foolish to want off of them.

        • My experience with them goes back a long way long before the stroke to when I was just a teenager. I don’t want to do a post about it but I’ll email you and tell you about my experiences.

  9. You all make me laugh in a good way!! The stories are all too similar. I had a CVA and getting help was far from me despite my cries for help to the Veteran Affairs hospital. Getting the SLP and PT’s to understand that driving to the appointments was stressing me out by the time I got there I had extreme brain fatigue. I’m still waiting on the Veteran Affairs Hospital to provide in-home therapy over a year later. At the time, I did not have the words to express how exhausted I was just to drive there. I’m still searching for assistance for myself. I am determined to get better.

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