Hmmm……

2 people sent me this article today. It’s about how yoga can help those with brain injuries. Interesting. You’d think that the people that were supposed to help me the most, my doctors, would have told me something about yoga and meditation and the plethora of research about meditation and its beneficial effect on the brain.
You need to earn respect, not demand it. You earn respect by helping people, being kind, and proving that you have helpful knowledge. Not by being an arrogant prick. If you spent years in school and have some letters after your name don’t for a second think that that will automatically garner respect.
Also, you teach people the way to treat you. For instance, a few months ago someone had the balls to say to me that I should change some things I say on my blog. I’m not gonna deal with that kind of BS so I haven’t talked to that person since. If you put up with crap, you’re gonna keep getting crap.



Categories: Brain stuff, Health, Recovery, Stroke stuff

Tags: , ,

32 replies

  1. Lets discuss how to get through to the medical world. I was challenged by a nurse today how I was going to succeed at that.
    I frankly don’t know but I’m going to try.

    • Killing them with kindness doesn’t work, shoving a crapload of research down their throat doesn’t work. We might have to come up with a whole new way that’s never been done before.

    • I think I may have mentioned this before, but I think forming a new stroke organization that is survivor-led and run that challenges the status quo could create the clout needed for the medical establishment to take notice, especially if the same-old, same-old research grants begin to be questioned. There is sort of a model out there in the world of mental illness where consumer-led (consumers of psychiatric services, a term insisted upon by people with mental illness instead of “patients”) organizations have grown up to challenge the dominance of NAMI which is family and doctor-dominated. These organizations remain state-specific, they have yet to coalesce into a national movement, because they lack a passionate and knowledgeable leader.

  2. Hi Amy,
    I have not been here in a little while. I’ve been lurking and very busy at work. I am very interested in the Kundalani yoga and meditation practices and hope to work these into my practices soon. Sometimes, I think that I should apply for disability pay(not sure that I’d qualify) just so that I can stay at home and do all of these different things. No offense to anyone on disabilty, it is just hard to work and come home and then do therapy. Work is “work” and anything more is just….too much. Arrrrgh….
    Anyways, no one in the hospital or rehab recommended meditation or yoga, so I’m willing to give these a try – when I can.
    I think I’m a little bit burnt out. Double Arrrrgh….
    Lori

    • I hope no one would take offense to that. I absolutely, 100% agree with and understand that.

      • Actually I am somewhat pissed off at your post Lori. To be able to work at all is a gift. I hate staying home and doing therapy all day. It is killing me and I would give anything to even be able to get to a job on my own much less do the work itself so please stop complaining. And if you can work it is positively immoral to even consider taking money from the state that is desperately needed for people who really can’t work.

        • Ok, but no one’s situation is worse than another.

          • True, but work really is the best therapy.

            • Ahhh ok Julia I think you’ve finally crossed the line. I want people to be able to come here and vent and say whatever they need to say without being judged or being made to feel bad for what they feel. Your comment to Lori was EXACTLY what a normal that understands nothing might say to you. Be thankful for what you’re able to do. No. I won’t have that on my blog.

              • Sorry for speaking my mind. Nobody, not even someone who has had a stroke, gets a pass for saying that they might try to qualify for disability pay so they can stay home from work and do yoga. The scammers (and I’m not saying that Lori is in this category but it could be read that way) make it harder for the rest of us to get disability, which I was unable to get, by the way. This is my last comment. Goodbye all.

                • Julia, your comment to Lori was over the top and inappropriate. Apologize to her and come back. We have important issues to discuss, like creating a survivor-led stroke association to take on the entrenched stroke establishment.

                • Julia, it’s tempting for me to be one of those “scammers” because the healthcare we purchase now that my husband is retired is ridiculously expensive and I’d like to be on Medicare, which I SUPPOSEDLY can do because, although I’m not 62, I am disabled. the catch is that to get on Medicare early, I have to collect SSD for at least 2 years previously. I don’t need and don’t want disability, so I’m paying through the nose for health insurance instead. I’m all for Obamacare, but there are so many effing holes to fix.

                • It’s ok to speak your mind, God knows I do but don’t berate others for speaking theirs. I hope that you continue to comment, we would all be upset if you stopped.

            • I think the best therapy is the one that revolves around what you love, miss and long for.

    • Yikes. I didn’t mean to cause controversy. I know that I am lucky to have been able to return to work. The work that I do is financial and I am on the computer all day – tax season was challenging. I was not affected cognitively and my physical limitation is now just in my right hand. Emotionally, work is very tiring and that’s the biggest hurdle. The work that I do does very little to improve my right hand. I wish that it did. It is exhausting to work and then come home and get into the therapy zone – some days, it just doesn’t happen.
      I’d love to stay at home or go to rehab and work on my hand – yoga, legos, writing, theraputty, meditation, puzzles – I’d certainly do it and would love to be able to. Losing your dominant hand sucks. But, I do have to work and I’m pretty sure that I wouldn’t qualify for Disability. We applied for it 3 years ago when I had the stroke and I was turned down – which I heard is somewhat normal. I didn’t reapply because I could return to work -they accommodated my right hand issue- and that limb did not affect my ability to work. If SSD would pay me to stay at home and work on my hand, I’d probably do it for a defined period of time. My job now is not a problem, but I am more limited in what I can do and it would be challenging to change jobs. I was also a big-time craftsperson(hobby) and that has been seriously curtailed but SSD doesn’t pay you for hobbies.
      Julia, I won’t apologize for my post but I am sorry that you took it so harshly. I can perceive how this post would come across to any strokees that are more severly affected and I really did not mean any offense. It certainly seems that you should qualify for SSD since you are not able to work. It sounds like you are in an angry place and I can understand that, too. I think that we just have different perspectives – and that’s okay. Please don’t leave because we all value your posts.
      Amy says that we can come here and vent and that is what I was doing. Thanks to everyone else for listening/reading.
      Thanks Amy.

      • Every day since the stroke I’ve been grateful that I lost my non-dominant side. Even pre-stroke, my left hand wasn’t good for much. Amazing how much better it would make my life if the little shit would just be its pathetic self again. Because my right hand has always been coordinated and capable, typing one-handed hasn’t been much of a challenge, which helped me go back to work as an editor quickly (too?).

        Jim and Dean, how do you envision “taking on” the entrenched stroke medical establishment? I do better at understanding a concept through concrete examples. Can you please help me understand?

        • Creation of a new survivor-led stroke association.

        • The way I envision it is to create a 501C3 non-profit that a. takes in donations from regular people and b. gets grants from foundations. Then uses those funds to hire researchers to solve specific stroke problems, none of this researchers doing something because it sounds good. A strategy and plan would exist. Successes would breed more donations and allow the organization to dictate to stroke hospitals what a great stroke hospital would look like. F.A.S.T. and Get With the Guidelines are not successes. This organization would follow the Myelin Repair Foundation and Michael J. Fox Foundation methods of using funds to hire researchers to solve problems. With a few successes under its belt it could dictate what research should be attempted. With such success the presidents of stroke hospitals could be talked to as equals and tell them exactly why their stroke department heads should all be fired.

          • Well, that’s pretty concrete. How do we begin?

            • I’m going to get a lawyer to setup one under stroke research institute. After that I’m not sure, maybe hire a grant writer, there are enough foundations out there that with the right pitch could donate millions. You’ve got to start someplace because the boards of directors of the ASA, NSA and WSO obviously allow incompetency to reign supreme.

          • Sounds great!! Sounds similar to the group that helped me the most…Angioma Alliance. They are dictating most all of the research that is being done for my rare condition. It was started by a passionate mom, so this can be done…the passion is here. Things can change and Dean, Amy, and everyone else can held this along. I’m on board if I can help in any way.

            • Sounds good, Dean. In the mental illness world, the federal agency SAMHSA (Substance Abuse and Mental Health Services Administration) is taking the lead in producing toolkits of evidence-based practices and requiring that recipients of their funding implement these practices. Seems like there is no similar Federal agency in the stroke world, so an equivalent nonprofit needs to be created. http://www.samhsa.gov/

      • You’re very welcome Lori. That comment was mean and uncalled for and I was taken aback by it.

  3. I learned a very long time ago that doctors have a God complex and need to be brought down to Earth quickly when dealing with me and mine. I don’t relish the task, but not afraid to do it.

    I’m happy to report my doctors and I have mutual respect for each other or they are not my doctors. They actually listen. (I actually have more letters behind my name than they do) 🙂

    • As doctors and other medical personnel go, I consider them resources. Just like in elsewhere in my life, I gather information, get opinions, try stuff out, and then decide what I’ll do. Then, I repeatedly go to the ones who gave good advice. Plus, there’s the requirement of being kind and professional. I end up hearing and reading plenty of shit that I depend on myself to evaluate and reject; I’m sure I’ve missed some good things in there, but I do my best.

  4. I agree with so much of this post WXCEPT for stonewalling as a good way of communicating. I don’t believe i have to defend/justify my behavior/words, but keeping an open line of communication is very helpful in my life, especially when someone has pissed me off. A friend of mine posted this on FB recently:

    “Be kind to those who are unkind to you – they’re the ones who need it the most”

    • I do very much agree with that quote. But you can only do that if you’re in a good place. Perhaps I didn’t handle that situation very well, but it’s what I needed to do at the time. It stressed me out and caused me to have a lot more anger than I already have so I needed to just get rid of the situation.

      • Yes, we have so much shit we HAVE to deal with, it’s a challenge to deal with shit from someone who had the option of not piling on a little more. It refers back to your empathy post.

  5. That’s a great article re Wounded Warriors. Thanks.

  6. Personally, as I’ve said before, I found that returning to work was very effective as cognitive therapy. But it was horrendous for my emotional recovery. At the time, I thought working was the best thing for me, but in hindsight, I might have been better off without it.

    The thing I REALLY want to do is row. It must sound trivial to some, but it was my favorite activity pre-stroke, and, if I COULD row, think of how much physical progress it means I’ve made, especially for my hand and arm. My legs and abs are capable of it now, but my grasp of the oar is now the Holy Grail. If I hadn’t gone back to work, that might have been what I strove for.

  7. My stroke was no fun. Blogging helps: strokediet.blogspot.com

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