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Posts by Amy

6
Oct

Peer-reviewed

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.

http://www.healthfreedoms.org/editor-in-chief-of-worlds-best-known-medical-journal-half-of-all-the-literature-is-false/

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.

 

The Lancet

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17
Sep

How to Cheer Up Stroke Victim

The title of this post was a search term on my blog today.  ‘How to cheer up stroke victim.’  Ummm, I’m sure the person that wrote this is newly devastated but I’ve been dealing with this crap for nearly 5 years and I’m a bit jaded.  It’s wonderful that someone cared enough to search that.  I’m pretty sure that something like that was never searched for by the main players in my life on how to deal with me and interact with me.  You really can’t cheer the person up, maybe you can, I don’t know.  For me, I just wished I had died.  The most you can hope to do within those first couple of years after a brain injury is provide fleeting moments of joy through laughter, perhaps through Grumpy Cat pictures.  This was the case for me anyway.  Maybe there are other stroke survivors that didn’t badly want to be released by death from the hellish existence they were forced to live.  I did.  Does anyone else want to comment on how you may have been cheered up?  I couldn’t be cheered up.  I was in a deep, deep, deep depression and had lost any and all hope.  The fact that I was able to pull myself out of that is quite amazing.  It’s pretty much all up to the individual, I think.  You can suggest all kinds of things that you think would help, read my blog, read Dean’s blog for all kinds of suggestions.  But you can’t do anything for the person, you can only recommend stuff, and hope they oblige.

But I’m going to do a post soon that is quite the opposite of the message of this post and tell recent strokees that life can get better, way better.

A side note, it has been said by Dean that e-mail after e-mail goes unanswered by the ASA and NSA.  I have sung the praises of Peter G. Levine’s book Stronger After Stroke, have recommended it to a bunch of people and have been a big supporter of his blog and have it listed on my homepage under ‘The Most Important Recovery Links You Need’ category.  And I have no plans of deleting it.  I still think this book is the best one that exists about stroke recovery right now.  This will change when I write a book.  But multiple e-mails of mine to him about meditation have gone unanswered and meditation is only briefly mentioned twice I think on his blog.  I can provide thousands of research articles about the benefits of meditation on the brain.  A plethora of evidence that would take months to read through.  Is anyone out there genuinely trying to help people without expecting anything in return with no personal agenda?  My heart aches for humanity right now.

Please go here for a better, affordable alternative to learning Transcendental Meditation.

To try to cheer up a stroke victim…..

IMG_1342   forgive  gcmfer

12
Sep

Constant vs. Intermittent Pain

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.

9
Sep

Rotator Cuff

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. 

14
Aug

Dermatomes

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.

Very different.

 

Some dermatomes…

derm

 

A few more…..

brachial-dermatomes

 

Even more…..

 

fp3-13

 

And what the hell, a few more…..

dermatomes

 

 

11
Aug

Struggle

Every single day of my life is a struggle both physically and emotionally. Every single f’ing day. And from conversations that I’ve had with stroke survivors that are years ahead of me in recovery, every single day of my life for the rest of my life is going to be a struggle. Maybe I felt like writing this because I’m having an exceptionally hard time right now emotionally, which was all triggered by a woman who very selfishly called me wanting to talk to me about one of the most painful and devastating experiences in my life. But the fact that I’m having a hard time right now certainly doesn’t change the fact that just being awake is hard.

And no one understands this, well except other stroke survivors. I look really good, I got back to doing a very technical, intricate job.  A job that hopefully someday I will be able to make a major impact on and change some things.  I seem to have totally overcome this to normals who don’t understand anything. I haven’t overcome anything, I’ve learned to live with it. I have no choice and never did have a choice. So I’ve learned to live with all the shit and try to use humor as a way to help me through this. If you’re a frequent reader of this blog, you probably have caught onto the fact that I use self deprecating humor quite a lot. But I certainly don’t want to. I’d rather not have to joke about all the stuff that is in actuality absolutely devastating to me like the fact that I can’t write, I spill EVERYTHING, I can’t cut my own food, I can’t run, I have horrible balance, I get dizzy just watching certain things on TV, I get HORRIBLE migraines once a month.  Etc, etc, etc.  Be careful if you try to make fun of these things about me just because I make jokes about them. Be careful.  2 or 3 people have free reign to joke about these things with me but most people do not. I suggest not trying to use humor with a person with a disability – about their disabilities that is – unless you’ve been given the go ahead, because the things you joke about or say are probably extremely devastating to that person.

Well, that’s it for now. I hope you’re having a better summer than I am.

30
Jul

Sleeping Posture

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……better-position-soft-top1

Or the third picture in this chart but you want it to look like the top picture here…..

Soft_or_Firm_Mattress

Beautiful….mattress3

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….imageswhich 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.

29
Jul

Empathy Cards

I shared this site with someone on my Facebook page a few months ago and just realized I very much need to share it here. These are the kinds of things to say to someone who is going through something awful. If you tell someone “everything happens for a reason” or “it’s all part of God’s plan” or “God won’t give you more than you can handle” or “you should be grateful you can still….”  or ” you should do this or that…”  or “you should feel this or that” or if someone talked to you about something and all you ever do is try to one up that person by telling them that you know how they feel because you’ve been through much worse(thinking of multiple specific people here who ALWAYS did that to me) – the person you said those things to is probably secretly plotting your death. 

6
Jun

Meditation: proven science – very, very, very proven

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.

Please go here for a better, affordable alternative to learning Transcendental Meditation _________________________________________________________________________________

Original post from Dean’s blog……

Harvard neuroscientist: Meditation not only reduces stress, here’s how it changes your brain

But I bet your doctor doesn’t have this as a stroke protocol.
http://www.washingtonpost.com/news/inspired-life/wp/2015/05/26/harvard-neuroscientist-meditation-not-only-reduces-stress-it-literally-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.
19
May

Advice

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.

Please go here for a better, affordable alternative to learning Transcendental Meditation.

14
May

All better

I’m pretty sure that the general consensus when someone sees me and then learns what happened to me is that I’m over it and don’t need any help anymore.  I look great, so what could I be dealing with now?  I am still dealing with so much crap on a daily basis that it’s hard for me to get through each day let alone think about the future. I can’t write – at all, I can’t eat or drink with my right hand, and I’m right handed. I have to ask someone to cut my f’ing food.  I can’t run. My voice sucks and sometimes people still think I’m less intelligent because of it. And because of the speech disorder it’s difficult for me to speak up and defend myself so people think I’m even more brain-damaged and stupid. I can only wear certain shoes because I walk weird, no heels ever again. My right arm starts shaking at really inappropriate times. I have horrible balance and I have A LOT of trouble on stairs. I get debilitating migraines once a month that last for 3 days. Don’t get me started on the emotional stuff that this has caused. Ok let’s start to talk about that. I’m incredibly reactionary when someone is insensitive to me. I now have Post-traumatic stress Disorder.  So I fly off the handle at little things. I spend days at a time in tears and not being able to function. Sounds like fun huh?  Until I met Pat I really wanted to be dead. He makes me not want to be dead.

But I look so good and seem to be doing so well –  what could be wrong?????     

6
May

Craniectomy

This post is for my family, friends, anyone that has had a craniectomy and their family and friends.  Something was said to me yesterday that made me realize that I have not been more than abundantly clear about something the way that I thought I have been more than abundantly clear.  I was speaking with someone about how sometimes it hurts when someone touches me in the wrong spot on the back of my neck because of the brain surgery.  She said, “but the surgical area would be healed by now.”  Let me be clear.  The brain surgery that I had is called a Decompressive Craniectomy.  ‘Ectomy’ means removal.  A part of my skull was cut into and REMOVED in order to allow my brain to swell after the stroke.  In some cases when a craniectomy is performed, this piece of bone is put back.  In my case, it was not.  The area of my skull that was cut out was not replaced by the piece of bone that was removed or by anything artificial.  I literally have A.HOLE.IN.MY.SKULL and will have A.HOLE.IN.MY.SKULL until the day I die.  So, it hurts sometimes when pressure is placed there.

Here is a pictorial description of my surgery….

11

 

Here is what the back of my head looked like when I became conscious again and woke up after surgery…..

scar

 

Sorry if these pictures disturb you but deal with it, I certainly have had to.

25
Apr

Options

I had lunch with a lady earlier this week to discuss options for her brother, a stroke survivor.  We were talking for a while and she asked “so what are the options for stroke victims?”  I responded “there really aren’t any.”  There aren’t.  And it makes me so upset and angry that I could just spit.  And I do sometimes.  When I had the stroke, I had health insurance at the time that approved 20 visits of physical therapy per year.  This was 20 approved visits of therapy whether I was seeking treatment for a sprained ankle or a stroke.  Umm.  THIS.NEEDS.TO.CHANGE.  “Lucky” for me, I had the education and knew what to do therapy-wise, and for some reason of which I have no idea I had the inner drive to actually do it.  It is utterly absurd and atrocious that some insurance companies do not differentiate between diagnoses and the same reimbursement will exist whether it’s for a broken finger or a traumatic brain injury.  I think I’ll write a few insurance companies some letters about this.  Since I am all about writing letters and agitating people and since I have a writing skill or two, I think I’ll make that my next project.  It is also utterly absurd that meditation is not a part of mainstream medicine.  I need to stop writing and go meditate, I’m getting too angry.

Please go here for a better, affordable alternative to learning Transcendental Meditation.

Dean, have a great trip.

assault

15
Apr

Article

I was blown away by this article and wanted to share.  (Credit to Barb, I read this because you liked it on Facebook)

The norm sure as hell ain’t always better, or even good. At all.

http://momastery.com/blog/2015/04/13/world-mentally/

8
Apr

Heel Raises (calf raises)

I tried to explain to someone the importance of this exercise and strengthening this muscle.

heelraises1

This will strengthen the gastrocnemius and soleus muscles, the calf muscles.  These muscles, when contracted, will plantarflex the foot(point the toes).  So when you do this exercise in standing, the only way to point the toes is to lift the body and raise the heels off of the ground.  This exercise looks easy but can be quite hard.  When you do this exercise standing, you’re using small(ish) muscles to lift the weight of the entire body.  You have to work even harder if you’ve got a few extra pounds on you.  You have to work about a million times harder if you had a stroke and the connection from the brain to those muscles is all messed up.  So when you’re walking, at the end of the stance phase of gait, right before toe-off…..here’s a picture that shows what I’m talking about.……

Gait-Cycle

So when you’re walking, at the end of the stance phase of gait, you have to lift the entire weight of the body with ONE LEG because the other leg has already swung forward.  The legs do opposite things during the gait cycle, they move forward in a reciprocal pattern.  So getting the calves strong, which is responsible for that motion, is vital for walking.