I was talking to Barb recently and she made such a good observation and suggestion for a post. The term ‘hemiparesis’ means one-sided weakness. Hemi = half and paresis = weakness. After a stroke, you’re going to be described as hemiparetic. But you’re not, not technically. Not at first anyway. It takes a while to become truly hemiparetic. It doesn’t take long, but it doesn’t happen immediately after a stroke. You see, a stroke is a brain injury, not a muscle injury. A stroke doesn’t directly affect your muscles in the least. It indirectly affects them by cutting off the signals to your muscles from the brain, but it doesn’t directly do anything at all to muscles. So, at first, the term ‘hemiparesis’ really doesn’t apply. Your muscles are still good. It’s your brain that got all messed up, not your muscles. After some time, those muscles that aren’t able to be used properly will atrophy and then you become truly hemiparetic. But not at first. A new word needs to be invented for that.
Some info for the tribe…..Long ago on my blog I used this picture…..
And to this I said life has not given me much water and sugar yet so my lemonade probably sucks. But life has recently given me some sugar and water in the form of a boyfriend who is just as sarcastic as I am and will give me shit right back. Here he is…..
His name is Patrick. But, just in case you still are getting tons of lemons and are at a loss as to what to do with them, Dean sent me this picture with what I think is a very good suggestion…..
One day a few years ago, I drove to work. As soon as I got to work my legs stopped working and I fell down. Something terrible had happened to my brain. I got to the emergency room within about half an hour. This is PLENTY of time to have been given the miracle drug tPA and maybe I could’ve been helped a little but apparently the hospital I was taken to is just a place where doctors go to hang out and not help patients. So after 30 hours of hanging out in the ER, some doctor said, “oh she had a stroke, we should probably do something about that.” So they life-flighted me to another hospital where the doctors actually help their patients. But they still tell you that you’re screwed and aren’t going to recover after something like this. After the first week of nothing at all being done for me, that was it. The damage was done. There was nothing anybody could’ve done to help me at that point and my recovery was solely on my own. I just didn’t know that yet. I didn’t know that probably for about a year and a half. Within that first year, I thought my doctors might actually know something about how to recover, they didn’t. I was on my own. Completely on my own. So are you if you want to get back to some semblance of the life you used to lead. This is why I have some semblance of a normal life again.
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.
Please go here for a better, affordable alternative to learning Transcendental Meditation.
A little over a year and a half ago, I needed to reboot my life. When I say reboot, I mean RE THE F*** BOOT. I didn’t need to reboot because of the stroke, that was 3 years ago. I needed to reboot my life itself. But the stroke allowed me to do this. I had a damn good reason to take some time off from life. I re-evaluated every single one of my relationships and let me tell you…..The majority of conclusions of all of those re-evaluations were not very pretty. Most of the people I called friends were not friends. Most of the people that I thought loved me did not genuinely love me. So I kinda disappeared and fell off the face of the Earth for a while. I deleted all social media(well, except the blog. Is this considered social media?). I deleted some friends, I deleted some relatives. I blocked some e-mail addresses and phone numbers. I did what I had to do in order to stay in this world. If I hadn’t of done that, I would NOT be in this world. Well I’m still here. I didn’t have a choice in still being here after my stroke but now I have a choice and I choose to show others how to recover from a brain injury because no one told me anything and I don’t want anyone else to go through the HELL I went through.
WordPress just sent me a notification that today is my 2-year anniversary of starting the blog. I remember reading somewhere that the majority of personal blogs are discontinued within 2 years because of lack of interest. So good for me I guess! This blog has changed DRASTICALLY from when I started it. I started it because I was an arrogant brat who thought I knew something. Little did I know that I knew nothing and had a hell of a lot to learn. Now this blog has kind of turned into a movement of sorts.
A stroke is not just an injury. If you break a bone, tear a ligament, or mess up a joint somehow you will probably be all better in a few months and have very minimal, if any, lifelong deficits. That’s provided you have a good orthopedic surgeon and physical therapist. If not, you’re screwed. I did not just get injured. This event nearly ended my life and RADICALLY, DRASTICALLY, MONUMENTALLY changed both me and my life forever. The neurologists didn’t offer me anything in terms of advising me on how to get better. I was told by multiple top-rated neurologists and “stroke experts” in the entire WORLD that I was not going to recover anymore at a year and a half. I was not going to recover anymore my ASS. Don’t say that to anyone else neurologists that “treated” me. If I learn of you saying that to anyone else I will drive to downtown Pittsburgh, walk into your office and we will have words. I promise you that. You’d think, you’d imagine that an “expert” on strokes would have mentioned meditation and the MOUNTAINLOAD OF EVIDENCE that exists to support how meditation can fix the brain. You’d think a brilliant neurologist would have mentioned that. You’d think. But no. No one said that to me. Now I’m saying it and will not stop saying it until it is taken seriously by the medical community. Actually, even then I will not stop saying it.
I have been told multiple times, by multiple people, that I saved their life with my blog. I sure wasn’t doing anything lifesaving as a physical therapist. But now I am. I didn’t save any lives by tempering what I say. I didn’t do it by being afraid to voice my opinions. I did it because I’m not afraid to tell it like it is.
I’ve said this on my blog before and like any good stroke survivor I’m going to repeat it over and over and over. Then take a nap. Then repeat it over and over and over again. Then most likely take another nap. Then repeat it some more. My brain surgeon did not save my life. That guy shaved my entire scalp, opened up my skull, performed 2 hours of surgery on my brain for which he was SICKENINGLY paid that kept me alive and prevented me from dying, closed me up then left me to fend for myself with severe disabilities. He did not help my recovery or help me get back to life in the least. No doctor of any kind helped my recovery. How did I find the things that did help me? MY research. No doctors included.
When this happened to me, I could’ve been like….well what the f***? Why me? Why did this happen and why did I survive? This is bullshit. Wait, I did think that. A LOT. A lot a lot a lot. A lot. I think most people in my situation would’ve checked out. But I didn’t and I have no idea why. But now……see I’ve become pretty spiritual recently. This does not mean religious. BIG difference. Spiritual ≠ religious. Now that I’m 3 years out, have made a pretty good recovery and kind of have a normal life again, I kind of think of it differently. Now I think, well what was the universe trying to tell me by having this happen? Obviously something. If I can change my thinking about this, believe me so can you because when this happened and for the first couple of years afterward, I wanted to be DEAD. Dead, dead, dead, dead, dead. Now I don’t want that.
Another random thought…..when I got sick I was living with an a-hole that went on this golf trip with his buddies every summer. The summer after my stroke I heard him say on the phone, without him trying to shield me from hearing it he said, “I can’t wait for this trip, I need a f’ing break.” What a jackass. I never got a break from this even for a second. The only sort of break I got was when I was asleep and sometimes not even then. Be careful what you say around us.
Random thought #3…..The internet is a magical place. The internet is where I get all my Grumpy Cat pictures, where I check my e-mail, where Facebook lives. The internet is where I found my meditation practice. I found it, ME. I found it through MY research and now I’m telling other people about it, anyone see a problem with that?????? And……the internet is where I started a blog and met all of you people. So I’d like to say in the style of Jimmy Fallon’s thank you notes…..Thank you, world wide web, for existing and allowing me to make all these friends.
There is a theme in stroke recovery and that theme is ‘repetition.’ I say it all the time. But I think I say it too much. I think I’m giving the wrong impression. It’s easy for me to say that now, 3-years post-stroke, because that’s what I need to do. I need to do a crapload of repetitions. But that first year this was NOT the case. I don’t know when the right time is after a stroke to start exercising intensely and for long periods of time. I don’t know.
What I do know is this…..The importance of sleep and rest is EXTREMELY downplayed. Healing takes place in the brain when you are asleep. That’s when the brain recharges. The first year after my stroke, I was afraid to move – so I barely did. The first year, why I did this I have no idea because I very much wished I was dead, but that first year I would walk on my treadmill for an hour and a half to two hours every single day. This meant holding onto the handrails with a death grip but I did it. Don’t ask me what motivated me to do that because I have no clue. I’m serious, I was suicidal, I wished the stroke killed me. But it didn’t, it left me disabled. Walking on the treadmill would wipe me out for the rest of the day. That was it for me. Other than my treadmilling, I rested. I slept. A LOT. Max of 3 hours of activity a day. Then at 9 months post-stroke I started a practice of meditation and chanting. For nearly a year, everything I did in my yoga practice was sitting in a chair. There was very little physical movement. I sat in a chair, did meditations and breath work using very specific brain protocols. A little at a time, a very little at a time, I was able to do more and was less afraid of physical movement. The meditations and breath work rewired my brain without actually performing a specific movement. And also, I still slept and rested a lot. I got back into exercise very SLOWLY and with A LOT of rest.
Look, I’ve been through absolute hell so I have a WILDLY different perspective on things than other medical people. What I’m about to say I would not have said 3+ years ago. When you spend years and years in school to become a doctor or therapist it makes you have a certain air, an ego, an arrogance. I get it. I had it. I had it big-time. Every single doctor or therapist I’ve ever met has it to some degree. Some a little, some a lot. I had it, then I had something else. I had a stroke and those arrogant doctors not only didn’t help me, they made it worse. I did my own research and found my own ways to get “better.” That involved a hell of a lot of sleep and yoga. the real kind. It’s expensive and not covered by insurance(which is utterly ridiculous) so you have to pay out-of-pocket for it but the price is irrelevant to me, it gave me my life back. I now know things, a lot of things, about recovering from a brain injury. Again, I wouldn’t have said this 3 years ago but today I’ll say it – Why on earth would you take the advice of someone who hasn’t walked this path? The “experts” I saw gave me NO helpful advice. If I offended anyone with this post, then you’re gonna be offended.
Thanks for a great weekend Barb and Tom!
Everything about post-stroke life is very monotonous. Everything. When I first had the stroke and for about a year and a half afterward my speech was incredibly monotone and I had an insanely flat affect. I couldn’t express emotion. I had emotions -and lots of them – but to the outside world it didn’t appear that way. I think the only emotion the world could see was when I cried. I cried all the time. Now things are very very different. I’m able to be very expressive. My external voice matches my internal one. For a long time, it did not. During the first year or two after something like this, no matter where in the brain your injury was, I think something similar to this might be a problem not because of the area of the brain that was injured but because there was a major brain insult. But I don’t know for sure. I was not affected cognitively at all but it sure seemed like I was that first year because my brain as a whole was injured and recovering from being very swollen. My brain just wasn’t right. I mean my brain is still not right but the effects are much different now that I’m chronic. But I wasn’t dumb or a different person, I was injured.
It takes a while after something like this to realize that the existing medical community knows nothing about recovering from a brain injury and you are completely on your own if you want to get better. Me, Dean, Barb, etc… We all know that we have to do our own research on recovering because we’ve all been at this for 3+ years. Well, in a few weeks I’ll be at 3 years post stroke. But the majority of you I think wound up on this blog because you or a loved one recently had a stroke and you’re within that first year or two. Now if you had a little itty bitty baby stroke or a TIA this is not directed at you. If you had a major event like I did and like most people here did and your entire life is completely turned upside down, this is for you. That first year – there’s going to be loads of support. Then it goes away because people go on with their own lives. That’s why a few years later you’re really gonna know who your friends are. That first year – you’re going to be scouring the internet for something that will make it all better. It doesn’t exist. That first year – you’re going to have a ton of doctor appointments and you’re going to think they’ll tell you something helpful and useful. Most likely, they will not. Basically, that first year is absolute hell. Do whatever you can to get through that first year, it gets better.
Here’s Grumpy Cat’s take on Valentine’s Day……..
And I just think these are hilarious……………
If you’re someone who thinks that my blog is too full of anger, browse away now. I’m warning you – don’t read any further because my blood is boiling right now. If you’d like to try and understand why I have anger, keep reading. Someone I know had a stroke in the right basal ganglia(cerebrum) about a year and a half ago. One of her main issues is that she cannot yet voluntarily extend her wrist and fingers. I was discussing this with her over email and this is what she, a former physician, said. I asked her permission to publish this……
She is not an outlier when it comes to treatment like this, she is the norm and it needs to stop.
“Last Friday my husband, a pulmonary and critical care physician, called the head of the stroke service at the Rehabilitation Institute of Chicago, Dr. Harvey, thinking that we might go there for an evaluation of my hand since they are rated No. 1. We were both on the phone when he called back. When we told him that I couldn’t extend my wrist or fingers yet he said that they had nothing to offer me in Chicago and that I should stop rehabbing and work on getting a life. When I said to him that rehabbing was the only life I had because I can’t do any of the things I need, want, and love to do, and that I wasn’t ready to give up yet, he basically said to get used to being disabled. He said all of this without meeting me or examining me. This is unbelievably bad medicine at supposedly the best place in the country. Like Peter says, lots of patients have flickers of movement to build on but it goes unrecognized and they are told they have nothing. Needless to say, I went into one of those death spirals I go into when I lose all hope. ”
Is it any wonder why I might have anger towards Western medicine?
Anyone who reads my blog regularly knows that I speak ad nauseam about the fact that I have an intention tremor. This is the opposite of a resting tremor. Everyone think of Michael J. Fox. Parkinson’s Disease causes a resting tremor. When Michael J. Fox is just sitting -resting- he shakes. The tremor comes out when he is at rest. When he performs a movement, the tremor subsides. At least that’s what I learned in school. I have no personal experience with Parkinson’s Disease and if I’ve learned anything it’s that book learnin’ certainly ain’t all it’s cracked up to be. Especially if you study neurology.
Anyway, what happens to me is the exact opposite. When I’m just chilling on the couch not doing anything, I can be completely still. It’s when I do something, like pick up a glass of water, that the tremor comes out. That’s why it’s called an intention tremor, it comes out with intent. So when I pick up a glass with my right hand, as the right side of my cerebellum is the damaged part, that glass better have very little liquid in it. Or else. My hand starts to shake. I’m really, really good at spilling things. Remember – cerebellum = same side of the body and cerebrum = opposite side of the body.
My vocal cords do the exact opposite. I had this test done where they stuck a camera down my throat in order to look at my vocal folds and they quiver at rest and calm down a bit when I make a sound. I think that’s really weird and I have no explanation for that. Anyone wanna take a stab at explaining that?