I finally feel, after 7+ years, that I speak normally again. Well, not normally but pretty normal. Many, many people have told me since about 2 or 3 years out that I sound absolutely fine, my voice is fine. Well, telling me that and my believing it and feeling that way are very, very different things.
I still get caught up on words, thoughts, etc. I still mess up all the time when I’m trying to explain something. I can explain anything to you in writing, I can write masterpieces, but don’t ask me to explain or articulate something to you vocally. Up until recently, I felt so incredibly uncomfortable in a group of people mainly because of my voice and my inability to participate fully in a group conversation. I had to be one-on-one with people. I still MUCH prefer that but I feel ok about conversations in groups now – as long as they’re not too long. I’m able to project my voice and make sarcastic comments again, I have timing again. For a long time this was not the case because I spoke so so slowly that I would ruin a conversation if I tried to interject something. I felt like people just pitied me because I sounded so awful.
For the first few years, speaking was physically taxing for me. I remember talking to someone whose husband had a stroke and she was having such trouble with the notion of simply talking being fatiguing. Think of it this way – I’ve talked a lot about gait/walking on this blog because that’s my thing. I know how to strengthen certain muscles used in walking and I’m able to figure out which muscles need to be strengthened.
The same goes for your voice. Speaking is controlled by muscles just like walking is and all of those muscles that control speech need to be built back up just like the muscles used for walking. @Tina C. – it’s physically taxing for your husband to speak right now, it’s fatiguing for him, it gets better. I have said through all of this that the speech issues were the most devastating part of the stroke. Not being able to say what you want to say when you want to say it is pure hell. Having to depend on other people to simply speak for you, order for you in a restaurant – stuff like that, is pure hell.
I wasn’t afflicted with expressive aphasia (the inability to speak). It sounded horrible but I was able to go to a therapist and talk about stuff and cry. Someone with expressive aphasia would not be able to do that and my heart goes out to you if that describes your situation.
This question is asking about ascending and descending stairs.
Sometimes, looking at the search terms that were used of how people ended up on my blog is a great way to give me an idea for a new post. This exact wording was put into Google(or maybe a lesser-known search engine)….”why do you go up with the good and down with the bad?” Somehow my blog came up in the results, my site was clicked on and the rest is history.
So, back to the question. Why indeed? Hey I know why!!!! Here’s why……(in case the first time around your question was not answered)…..
I’ll explain this using the example of a sprained ankle, think of an orthopedic injury that requires you to put less weight through one foot when walking or it will hurt like a m-f’er. When it comes to the weird gait patterns after a stroke, sometimes honestly this won’t apply. It did not apply to me for the first couple of years after my stroke. It didn’t work for me. Because of the tremor and ataxia in my right leg, I had to do the opposite of this gait pattern for quite some time when negotiating stairs. Going down with the bad didn’t work for me because my “bad” leg had a mind of its own for a while and I had zero control over it. I wasn’t able to direct it and tell it where to go.
Ok, back to the question. Pretend your right ankle is messed up. So the right leg is the “bad” leg. When going up stairs, the entire weight of whole body must be lifted up to the next stair. You wouldn’t want to put all that weight through your messed up ankle. So, when you go up stairs, you “lead” with your left leg, using that leg to do all of the work lifting your body, and bring your right leg up to same step to meet it. That way, when climbing a step, all the weight being lifted is on the “good” leg, you wouldn’t want all that weight put on your messed up ankle.
Going down a flight of stairs is the exact opposite. Again, you don’t want all that weight on your “bad” leg, so you would put your “bad” leg down onto the next, lower step first, which will transfer all the body weight to the left “good” leg and it can then do the job of lowering your body down without using your right leg at all.
Try it, go down a step, put your right leg first on the step below, you should feel your left side tense up a little as it prepares to perform the act of lowering the body to the next step down.
Buying a house in another far-off state at the same time as selling your current one is a hell-ish process and I don’t recommend it. Unless you’re like me and you’re absolutely suffocating in your current location and need to live somewhere else for the sake of your mental health – then I highly recommend it. I thought that having a stroke, being in the hospital for a month, and having your entire life turned upside-down and inside-out was the closest that I would ever get to HELL-ON-EARTH. Ummm, yeah it was. This whole house buying/selling process has been like a vacation compared to that. This has been great. I’m sure my husband would agree.
So anyway, we’re done tomorrow. The house in Florida is ours now and we close on our Pittsburgh house tomorrow. Then we’re done with all this crap. When we drive back to Florida on Monday, we’ll just be driving home. To our house. There will be no uncertainty, anxiety, stopping at a hotel in West Virginia in order to print out and fax documents. No panicky phone calls and e-mails, we actually get to enjoy this road trip. Either the person that sold us the house or the selling realtor sucks. I’m not sure where to place blame, but one of them sucks bigtime.
The closing of our house required signing A LOT of paperwork. A LOT. Not being able to write is one of the most devastating things for me about being alive, so that was fun. We got a Power of Attorney drawn up so that Pat could legally sign everything on my behalf. When we went to apply for a mortgage is when I became aware that this would be necessary. There was a ton of paperwork to sign then too. And I had to sign everything myself. We didn’t have the POA yet and the guy had to witness me signing. So, I had no choice. He kept saying to me “it doesn’t matter what your signature looks like.” Thanks for trying to make me feel better dude but that’s not at all the problem. The problem and what makes me so upset is not the illegibility of my hand-writing. It’s the physical act of putting my right arm/hand in the writing position. That very act makes me cry. Placing my arm in that position sets off a series of events inside of me that ultimately ends up with me in tears. Good thing that medical records have pretty much all gone electronic. There are a ton of people who hate this and complain about it, but I sure as heck am thankful for it. I certainly wouldn’t be able to do this job if it involved any writing.
I’m closing on my house in Florida tomorrow. I finally feel like for the first time in my life I’m really doing my thing, what I want and not conforming to some vision that other people came up with as to what I ‘should’ do or how I ‘should’ behave. I’m doing what’s best for me and my husband, and our marriage. That’s certainly what matters most.
We arrived in St. Pete last night and have been exploring the city since we got here. On foot. We’ve been walking around. I remember when I wrote this post. When I wrote that, curbs were really scary to me. A small curb felt like a freakin’ mountain. I remember the feeling, the fear. Anyone reading this that never had a stroke, going up and down a curb is second nature to you and doesn’t require any concentration whatsoever. Have a stroke, that changes. Drastically.
But walking around this flat city, curbs are no longer scary to me. I won’t say it’s second nature for me, I’m still very aware that it’s a different level of ground, but it doesn’t require much extra concentration for me to navigate a curb. I squeeze my husband’s hand a little tighter when approaching a curb but I don’t have to think about doing the whole ‘Up with the good, down with the bad’ thing anymore. 6 years after the stroke and it’s so different and better than those first couple of years post-stroke. So, so much better. It gets better.
I want this both for myself and my future therapy gym.
walking bike for stroke rehabilitation
Massive amounts of therapy available in one intervention.
Upper limb extension.
Sensation – Wind blowing over skin.
So why doesn’t your stroke department have this?
I just received this email…..
“Good day. My brother had a stroke of the left cerebellum a month ago. He had decompression surgery and was in Critical care for 3.5 weeks. He went to rehab 4 days ago but he is having trouble completing the exercises because he is so dizzy and nauseous. Was this your experience? Do you have any suggestions? Trying desperately to find resources to help him.”
“It’s wonderful that you’re trying to help your brother. I wish I had someone do such things for me. That didn’t happen to me but I’ve heard of others saying the same thing. I wish I could give you names to get in contact. I’m sorry.
My suggestion is while the physical exercises make him dizzy and nauseous, get him into meditation ASAP. ”
Please go here for a better, affordable alternative to learning Transcendental Meditation.
Can anyone give him any suggestions?
I’m getting married next month to the most wonderful man who ever existed on the planet. He might not be real. He is an empath, he is the funniest human being ever, and he is the most brilliant man I have ever met. We’re not having a wedding, just going downtown and getting married because we want to be married. When you have a stroke, man do I know the emptiness, loneliness, intense fear, suicidal thoughts and feelings, people not understanding anything and not trying to understand, and hundreds of other bad feelings. But good things (can) happen after you get through Hell. I’m not saying they will, but they can.
So, I’m going to stop blogging for now, possibly forever. I’m going to go live my life as best as I can. And I need to try to get to a place of inner peace. The anger that I have is eating me up inside. It comes and goes, but when it comes it is incredibly intense. Barring my therapist who is unbelievably wonderful and also might not be real, Western Medicine has done little to nothing to help me with this. I believe the way out of this is meditation. At least an hour of it everyday. And eventually, hopefully, I will feel ok all the time. I will never delete the blog because I happen to think it’s chock full of a ton of great information all in one place. And if anyone ever has any questions, feel free to email me. I’m here to help.
So this is Dr. Amy signing off, for now…….
This makes me so sad. Figure out stuff for yourself because no one will do it for you. No one figured out anything for me. NOT.A.THING. I’ve learned to only depend on myself. Evidence-based medicine sure as hell doesn’t mean what it used to, if it in fact ever meant anything. Once again my heart aches for humanity. Thanks, Dean, for finding this. And for finding the most research on stroke that exists anywhere in the world. And the internet.
Editor In Chief Of World’s Best Known Medical Journal: Half Of All The Literature Is False
Well shit, now more than ever we need stroke survivors directing and running the strategy for solving all the problems in stroke.
In the past few years more professionals have come forward to share a truth that, for many people, proves difficult to swallow. One such authority is Dr. Richard Horton, the current editor-in-chief of the Lancet – considered to be one of the most well-respected peer-reviewed medical journals in the world.
Dr. Horton recently published a statement declaring that a lot of published research is in fact unreliable at best, if not completely false.
“The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue. Afflicted by studies with small sample sizes, tiny effects, invalid exploratory analyses, and flagrant conflicts of interest, together with an obsession for pursuing fashionable trends of dubious importance, science has taken a turn towards darkness.” (source)This is quite disturbing, given the fact that all of these studies (which are industry sponsored) are used to develop drugs/vaccines to supposedly help people, train medical staff, educate medical students and more.
It’s common for many to dismiss a lot of great work by experts and researchers at various institutions around the globe which isn’t “peer-reviewed” and doesn’t appear in a “credible” medical journal, but as we can see, “peer-reviewed” doesn’t really mean much anymore. “Credible” medical journals continue to lose their tenability in the eyes of experts and employees of the journals themselves, like Dr. Horton.
He also went on to call himself out in a sense, stating that journal editors aid and abet the worst behaviors, that the amount of bad research is alarming, that data is sculpted to fit a preferred theory. He goes on to observe that important confirmations are often rejected and little is done to correct bad practices. What’s worse, much of what goes on could even be considered borderline misconduct.
Dr. Marcia Angell, a physician and longtime Editor in Chief of the New England Medical Journal (NEMJ), which is considered to another one of the most prestigious peer-reviewed medical journals in the world, makes her view of the subject quite plain:
“It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of the New England Journal of Medicine” (source)
I apologize if you have seen it before in my articles, but it is quite the statement, and it comes from someone who also held a position similar to Dr. Horton.
There is much more than anecdotal evidence to support these claims, however, including documents obtained by Lucija Tomljenovic, PhD, from the Neural Dynamics Research Group in the Department of Ophthalmology and Visual Sciences at the University of British Columbia, which reveal that vaccine manufacturers, pharmaceutical companies, and health authorities have known about multiple dangers associated with vaccines but chose to withhold them from the public. This is scientific fraud, and their complicity suggests that this practice continues to this day. (source)
This is just one of many examples, and alludes to one point Dr. Horton is referring to, the omission of data. For the sake of time, I encourage you to do your own research on this subject. I just wanted to provide some food for thought about something that is not often considered when it comes to medical research, and the resulting products and theories which are then sold to us based on that research.
It’s truly a remarkable time to be alive. Over the course of human history, our planet has experienced multiple paradigm shifting realizations, all of which were met with harsh resistance at the time of their revelation. One great example is when we realized the Earth was not flat. Today, we are seeing these kinds of revelatory shifts in thinking happen in multiple spheres, all at one time. It can seem overwhelming for those who are paying attention, especially given the fact that a lot of these ideas go against current belief systems. There will always be resistance to new information which does not fit into the current framework, regardless of how reasonable (or factual) that information might be.
My aunt has been going to physical therapy for a few months for some hip pain. She told me she is feeling a whole lot better but that there are still some nagging symptoms that haven’t been relieved. I think there is probably a spinal component to her symptoms that hasn’t been diagnosed so I told her to come over and hopefully between my brain(the good part) and the PT she’s going to we’ll be able to figure this out. Usually when there are symptoms left over that haven’t improved with other stuff, something is going on in the spine. Little secret: most pain you get in the back is due to discs. Saying the word ‘disc’ to people usually freaks them out, but 99% of the time it’s no reason to be really scared. I mean, it should be addressed through different body positions and posture and stuff, but don’t freak out. The spine is weird, discs are weird. Sometimes a disc sticks out a little bit and presses on a nerve and causes pain or numbness or tingling. Then it goes back to where it should be and the symptoms stop.
When you should be more concerned, and what I’m going to tell my aunt when she comes over, is that the time to be more concerned is when those symptoms are constant and don’t go away no matter what position you are in. You’d much rather have intermittent symptoms, symptoms that come and go and that you can figure out a way to get relief. This means the symptoms are purely mechanical, that position of the bones, muscles, body as a whole are causing them. This is an easy fix – well, sometimes. Get into certain positions, do certain exercises and let those nerves heal up and the problem usually goes away.
With constant symptoms, it may still be a mechanical issue of the body and certain positioning and certain directional exercises will help the problem. I’ve had patients in the past that came in with constant pain then the symptoms turned intermittent – then gone. When there is absolutely nothing that can be done to change the symptoms no matter what direction/positions you put the body in, something else is probably going on.
A search term on my blog yesterday was “rotator cuff exercises for stroke patient.” The exercises to strengthen the rotator cuff are the same whether you had a stroke or not. The muscles and nerves are all the same as before a stroke. The rotator cuff is the rotator cuff, it doesn’t change just because you had a stroke. What changes is the ability to do some of these exercises properly and modifications might have to be made in order to work the correct muscles. In some cases, major modifications. If that is the case, you would probably need to see a PT in order make sure the correct muscles are firing. But essentially, it’s the same as the day before you stroked.
A search term on my blog today was ‘dermatome chart.’ I couldn’t remember in the last 3 or so years ever doing a post about dermatomes so I searched that word on my blog myself and the only thing that came up was my Referred Pain post. These two things are entirely different and I realized when re-reading the Referred Pain post that I didn’t explain it very well. Dermatomes have nothing at all to do with referred pain. Referred pain means you get a pain somewhere else than the area that is actually messed up. Like when you have pain down your left arm during a heart attack – that’s referred pain.
A dermatome is an area of the body that specifically corresponds to a certain spinal segment. When you have pain in a certain dermatome, you also feel pain or some other symptom in an area other than the area that is actually messed up but when there are symptoms in a dermatomal pattern, it’s a spinal issue. For instance – pain, tingling, or numbness in the right thumb means there is probably something wrong with your right-sided C6/C7 spinal segment. Even though your neck may not hurt. Provided no one smashed your hand with a hammer. But hey if that’s what you’re into……. If you have pain, tingling, or numbness in your pinky finger up through your triceps there’s probably something going on at C8/T1. If your toes are hurting, or tingling or numb, one of your sacral nerve roots is probably all jacked up. Provided your foot didn’t just get run over by a truck or something. These kind of symptoms are called radiculopathy. I wrote about that before.
So referred pain – pain (usually from a crappy organ) felt in a whole other part of the body.
Radiculopathy/dermatomal pain- symptoms originating in the spine that are following the length of the nerve and felt somewhere other than the spine itself.
Ever wake up with a really sore back? Or do you wake up like that every morning? Has anyone ever asked you if your mattress is saggy? I’ve been treating someone who has a tendency to fall asleep in his recliner at night and just stay there all night. This is bad. His friend was there when my patient was talking about this and the friend said “when you wake up in the morning all your muscles are all in weird positions.” The reason you would feel pain in your back after sleeping in a recliner or on a saggy mattress actually has very little to do with your muscles, it’s what you’re doing to your spine, putting your spine in those bad positions at night. When your mattress is real saggy, you sleep all night and your spine looks like this……
So you might wanna think about getting a new mattress if you always wake up with back pain. I can pretty much guarantee that you’ll have back pain in the morning if you sleep in a recliner, unless you’re relatively young.
So if you sleep like this all night….which is how my patient sleeps with no regard whatsoever to posture or ergonomics, you’re gonna wake up with back pain. You spend 8 hours like that all scrunched up and your spine all flexed, that’s terrible for your back and will cause pain in the morning. So don’t do that.
Of course, there are always exceptions and there always will be reasons you’re told to sleep a different way or in a recliner or whatever, but for the average Joe, these scenarios should be temporary and you should take my advice given above.
But I had a stroke so don’t take my advice.
Meditation: still considered an “alternative” and “complementary” treatment
Meditation: not at all a part of mainstream Western Medicine, only Eastern Medicine
Meditation: thousands upon thousands of research articles proving how it positively affects and changes the brain
Meditation: might just be the absolute best, scientifically proven intervention for healing the brain that was never recommended to you by your doctor. Certainly wasn’t recommended to me and every single other stroke survivor that I have ever met.
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Original post from Dean’s blog……
Harvard neuroscientist: Meditation not only reduces stress, here’s how it changes your brain
A couple of lines from there. Why the hell doesn’t your doctor know about this? And prescribe this? Are they that clueless?We found long-term meditators have an increased amount of gray matter in the insula and sensory regions, the auditory and sensory cortex.We also found they had more gray matter in the frontal cortex, which is associated with working memory and executive decision making.Q: So how long does someone have to meditate before they begin to see changes in their brain?
Lazar: Our data shows changes in the brain after just eight weeks.
I just spoke with a stroke survivor’s brother. This person sought me out and asked for my help and my advice. My advice was that for starters his sister needs to get into an intensive rehab program and begin a practice of daily meditation. This information was then given to his doctor who advised this family completely the opposite of my advice and said an intensive rehab program would be a waste of money.
Ok. Ok. Deep breaths. Who do you think you are you arrogant AHHHHHHHHH to advise your patient to NOT do what I advised? Who do you think you are? I am the one who had a massive stroke and recovered amazingly well, NOT YOU.
It is so unbelievably, incredibly frustrating doing what I do for a job, having been through what I’ve been through, knowing what I know and feeling as if no one listens to me. The right people aren’t listening anyway. This doctor obviously doesn’t have her patient’s best interests at heart. As mine did not either. According to multiple doctors of mine, my recovery was going to end at around 2 years and my life was pretty much over. I was written off.
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