I don’t care who you are or where you came from, going downstairs and downhill is harder than going upstairs or uphill. This is because the muscles that control that motion are working very differently. The same muscles control the action of ascending and descending something, but descending is harder. Ever hear the expression “same shit, different day?” Well, here it’s “same muscles, different action.”
It’s kinda blurry but I really like that picture. It’s from here.
My mom says when her knee is hurting it hurts worse going downstairs. That’s because she using the quadriceps muscle eccentrically. When I climb stairs, it’s much harder and feels much less stable descending stairs. That’s because I’m using the quadriceps muscle eccentrically. If you don’t have a brain injury and tore your ACL or something, going downstairs will be harder. If you have perfectly uncompromised muscular and neurological systems, going downstairs and downhill will be harder. It might seem like it should be easier to walk or run downhill because of the momentum but you have to control the motion with eccentric contractions and they’re hard.
Sorry I’ve been so quiet the last couple of weeks, I’ve had 2 crappy dental procedures and a car problem. Apparently my last dentist was not so great so I had to have this super-duper cleaning procedure done.
For all of my droning on and on about meditation and how super amazing and beneficial it is, I don’t have a post just entitled ‘Meditation.’ It’s always ‘Meditation and…………’ I finally got around to emailing the one neurologist I like in this world. Here is the e-mail…..
“Hi Dr. T!
Do you recognize my name? I hope so! 🙂
I wanted to tell you something. After my stroke, I saw A LOT of doctors, a lot. You were the only one that listened to what I had to say and didn’t treat me like you were superior and knew better. The general consensus in the stroke survivor community is that if you have a stroke, you’re screwed. We feel neurologists can be very arrogant and after the initial period of a couple of months after injury, you’re on your own and no one is genuinely trying to help you. I know this because I write a blog that has become the go-to place as a resource for information and support for stroke survivors. I get emails and questions from people all over the entire world about things to do after a stroke.
I wrote about you after my last appointment with you and have recommended you to other stroke survivors.
Here is what I wrote…
Please, please, please start recommending meditation and breath work to your brain injury patients, please. There is a plethora of evidence about meditation and its effects on the brain and I can’t for the life of me understand why it is not part of mainstream medicine yet.
Please tell your patients that they need to meditate.”
I really don’t get it. Meditation has so much research to prove how good it is for the brain and how it helps with neuroplasticity, I really am flabbergasted that neurologists don’t recommend it. They shouldn’t just recommend it, it should be a standard for brain injury patients. Read this. We have a lot of work to do. Meditation belongs on doctors’ prescription pads, it shouldn’t be just a fleeting recommendation.
Please go here for a better, affordable alternative to learning Transcendental Meditation.
I have written many, many times about how the transfer of thoughts in my head to words out of my mouth is all messed up. My mind works light years faster than my mouth. There is a HUGE disconnect there. It’s not the same when I write and it never has been. From day one, I could write coherently and express myself that way, not that anyone gave a damn what I had to say. But when I tried to speak – not only was speaking physically taxing and my speech was all messed up but what I said was at times completely different from what was in my head. It was never like that when I would write, well type, never. If only I could write and didn’t have to rely on typing.
I was at a friend’s house this weekend and we were playing the game Catch Phrase. Know what that is? It’s a game where you’re given a word and you’re supposed to make your partner guess that word. Before the stroke, I was a spitfire at games like this. Now, not so much. When it was my turn to guess the word, I had it in my head but it wouldn’t come out of my mouth. When it was my turn to try to make my partner guess a word, again I had stuff to say in my head, but I couldn’t get it out of my mouth. Every turn was timed and that did me in. The pressure of a timer just totally made my attempts futile. I highly recommend you do not play games with other people that are timed unless you know the people really, really well because you will NOT do well.
The company that I work for is 100% orthopedic. My boss has told me that down the road they would like me to maybe do some neuro rehab. Neurological physical therapy. This won’t happen for a few years, I certainly can’t be a practicing PT right now. Well, I guess I could – I don’t know. I’m assuming my bosses have the opinion that I sure shit know some things when it comes to rehabilitating a brain. And I also get emails/questions from people around the entire world about things to do after a stroke. Everyone who reads this blog regularly knows I am a HUGE advocate of meditation and its beneficial effects on the brain and body.
As far as physical therapy stuff is concerned – I got that covered. But there is a crapload of other stuff that you should be doing that doctors will not tell you so I’d like to know. Dean, I read your blog daily and believe me I will be sharing the research you’ve devoted your life to finding that is currently being ignored in the medical establishment. To everyone else that isn’t Dean 🙂 – if something has really helped you, please tell me so that I can pass that information on.
Please go here for a better, affordable alternative to learning Transcendental Meditation.
The first couple of years that I was a practicing physical therapist, I was scared of everything. It’s really scary when someone that’s already in a lot of pain and coming to you for help tells you that the exercises that you asked them to do caused more pain. That’s a scary thing. That’s when confidence and experience become critical. Now, I only have 4 years of work experience so I don’t want to give the wrong impression but that being said, I kinda know a lot and I was really good at what I did. I only have 4 years of work experience but I have personal experience now that most health care practitioners with decades of work experience don’t and never will have. It took a few years after getting a lot of good results with people to have the confidence to say to someone “I know it hurts a little more or in a different spot, that’s ok. Keep doing the exercises and I promise you’ll feel better.” That wasn’t always the case of course but I knew what to do and how to deal with it after a while.
When I got sick, and when I was doing inpatient rehab, I could have done a whole heck of a lot more than I was asked to do. But I’m sure my therapists were absolutely terrified of me. First of all, I was the youngest person in the stroke unit so that alone probably scared them. I was bald, I had an enormous scar on the back of my head, I was shaking uncontrollably due to my tremors and ataxia, I could barely speak. I looked like absolute, utter hell. So I’m sure they were scared shitless and were terrified to ask me to do any real exercise. It’s not their fault, it’s what they were taught and how they’re told to treat. In therapy I was tired as hell because I wasn’t allowed to sleep when I needed to be asleep. I was scheduled to go therapy based on THEIR schedule, not mine. I wasn’t AT ALL getting what I needed.
To say that I have a bit of a different perspective on some things than I did 4 years ago is an understatement. Neuro rehab is really messed up right now. The things I described above are why we need protocols in stroke rehab. Many, many, many stroke survivors that I know have said things like “it seems like no one knew what to tell me to do.” It’s true, therapists don’t know what to say to you. Don’t get me started on neurologists. I’m supposed to take aspirin everyday, well I asked 3 different doctors how much aspirin I should take and got 3 different responses. One extremely arrogant neurologist that I went to told me that the fatigue I experience is not a result of the stroke. Jesus, what an asshole.
I could’ve done a lot more but the PTs were afraid to have me do stuff. I get it. I would have been afraid too. I blame the doctors and researchers for not knowing a GD thing when it comes to stroke rehab. That confidence and experience that I mentioned up above does not apply when it comes to rehab after a stroke. It just doesn’t exist because there is no standard of care in stroke rehab whatsoever. As an orthopedic PT, I would get protocols every day about how specifically my post-op patients should be treated and when they should be asked to do certain things. Nothing like that exists for stroke rehab. Nothing, not even close. Don’t have a stroke in the next 20-30 years. Hopefully by then some standards of care will be set in place and then you can have a stroke, no biggie, but not in the next decade or two.
I want to warn you, keep reading and you’re going to get very angry. If you choose to read the article that I’m going to link to, read it sitting down because your blood pressure will rise dramatically. High blood pressure is a risk factor for stroke….so maybe don’t read this. But read it. Have you been curious as to why the abbreviation NFL now stands for National Felons’ League? Well, here is why that is. This is an article about how a doctor said that the brains of these players are really f’ed up because of the repeated blows to the head and how it was causing lifelong disabilities, and the NFL IGNORED IT. Not only did they ignore it, but they tried to discredit this guy and his research and said it wasn’t so. The NFL wanted their own doctors to make a statement and these NFL doctors IGNORED the truth and tried to say otherwise because they were getting PAID to say otherwise. Because they were being paid to say otherwise. Talk about a severe abuse of power. Talk about not wanting to genuinely help anyone. This is the overwhelming attitude of the majority of doctors that I have encountered after my illness. I’m so f’ing sick of this culture. This article is 5 years old but is really relevant right now because a movie is currently being filmed about this doctor.
I forget a whole lot about those first 6 months after the stroke, it’s insanely blurry but last week I was reminded of something that even at the time when it happened I remember thinking that it was hilarious and I also remember thinking “why in Sam Hell did that just happen?” What does that expression mean? Sam Hell. I was in physical therapy a few months after stroke day and she had me doing an exercise where I had to grab cones. It took me literally like 5 minutes to grab one cone and it was so frustrating that I wanted to scream but also couldn’t scream at the time and I just wanted to kill everyone. So I was doing this exercise and concentrating like hell on grabbing these stupid ass cones and I was so angry inside and I said “shut up.” That was not directed in any way at my therapist. I loved her. She hadn’t even said anything. I don’t even know why that came out of my mouth. I can’t believe I’ve never written about this before, I laughed about this for months. I said “shut up” out of nowhere and my PT said “did you just say shut up?” and looked bewildered. You’d think a PT that works in neuro rehab would be used to her brain-damaged patients saying all kinds of meaningless, weird stuff but who knows?
I’m telling you, I had ZERO control over what came out of my mouth, zero. Sometimes what I said didn’t even closely resemble what was in my head and sometimes things would come out of my mouth that – just came out. I wasn’t even planning to say anything but my mouth and vocal cords had a mind of their own. Now they match up, I think. I hope they do.
A friend that I haven’t talked to in a while contacted me yesterday and told me this…….This friend of mine is a speech therapist, keep that in mind as I tell you this story.
She told me that her cousin, a 29 year-old woman who is married with a 2 year-old, had a rupture of a brain aneurysm and brain surgery a little over a month ago. She wasn’t diagnosed as having had a stroke during surgery but who knows? Very strange similarity here, my friend’s cousin is a physical therapist and is right now at the very same rehab hospital that I was at. She was in the ICU for 5 weeks. Jesus Christ. She was not able to swallow for a long time and my friend told me that her treating inpatient speech therapists had given her no oral motor exercises for swallowing. This angered my friend very much and she gave her cousin a bunch of exercises. She did them with her parents all day and was able to eat the next day. I was not allowed to have water for 2 weeks when I was in the hospital and was given zero oral motor exercises to help speed up the process of being able to eat solid food and drink water. My friend asked me “Is there anything I can tell her parents she should be doing that the doctors haven’t told her?” My answer: “ABSO-FREAKIN’-LUTELY YES!!!!!” I told my friend that her cousin needs to start some kind of meditation practice ASAP. While the most she can do is lay in bed right now, she can meditate and start working on the brain. When my friend comes to Pittsburgh again to see her I’m going to go visit, if the girl is accepting visitors. I sure as hell didn’t want visitors when I was like that so we’ll see. No one asked me anything about visitors though. As soon as I find a new meditation teacher that I like and trust and think would be appropriate for this I am going to ask if she will travel to the hospital and teach some stuff to my friend’s cousin.
I’ve had it. I’m so fed up. I’m just fed up. Her therapists didn’t do what the hell they were supposed to do. Nor did mine. Every other day I hear a f’d up story like this. I’ve just had it.
At the bottom of my posts there are buttons under something that says “share this.” Well, this blog post was shared 704 times on Facebook. Jesus H. Christ. I linked to this post before and I’m doing it again because obviously everyone who blew out some brain agrees with these and every.single.one of these things has been said to me in the last 3.5 years by one moron or another. Actually by a family of morons. These things that were said to me made me SO angry…………just don’t say these things.
I really need to write a book. The author of the great Stronger After Stroke, is a Physical Therapist Assistant who has been researching nothing but strokes for I think like 20 years or something? Maybe that number’s wrong, I loaned my book out to Pat who actually wants to learn and try to understand the little slice of hell I go through on a day-to-day basis. I’m sure it says the length of time in there. 20 years is a hell of a lot more years of experience than I have dealing with this topic. But here’s my experience with stroke – I had one. Wait, no, hold on, I would have only had one stroke had the doctors done a GD thing for me but they didn’t so I ended up having 3 strokes. The damage to my brain being gigantic. And an a few MDs decided to do something in order to prevent death for me so that I could live out the rest of my life disabled. Thanks so much!!!!!
Dean, you wanna collaborate on a book with me? Seriously? I happen to think it would be the best book on stroke rehab/recovery in existence. But that’s just me. Peter Levine does not mention meditation in his book. A major portion of my book is going to be dedicated to meditation and its effects on the brain and body. I really, really don’t understand why meditative practices are not being used in hospitals and prescribed by neurologists. I don’t get it, but I don’t get a whole hell of a lot about this country.
Please go here for a better, affordable alternative to learning Transcendental Meditation.
When I got sick, I was dating what I now know is the most dishonest and deceitful man I have ever met in my entire life. I am now dating the most honest and genuine man I have ever met. It’s like night and day. A friend that I recently had a falling out with told some lies. My doctors told lies. Look, please don’t lie. Especially to stroke survivors. People with brain injuries are already, automatically incredibly, incredibly angry. Being lied to or finding out that a lie was told about them makes that anger so very much worse. Once you’re caught in a lie, everything you ever say will be questioned.
“If you tell the truth, you don’t have to remember anything.” – Mark Twain
Dean recently wrote a post about this and I want to, too. How did this myth start? The idea that humans use only 10% of their brains. The new movie Lucy is based on this premise that normally we use only 10 percent of our brains. Well if that’s true I’m screwed, as are the majority of stroke survivors. I definitely killed way more than 10% percent of my brain when I decided to have a stroke. If I killed some of the 90% of my brain that I wasn’t using then why do I have so many problems? Can anyone answer that? Dean killed a whole lot of his brain in a completely different area than I did and he has issues. No, we use the whole brain. And when some of it is killed off, like for instance when you have a stroke and decide you don’t need some brain matter anymore, other areas of the brain CAN take over for those functions.
I always say that I have 3 friends. I thought that I had a lot more friends, but when shit hit the fan, turns out that I did not. I say this because 3 people, 3 friends of mine really, really stood out from the crowd and chaos when I got sick. These 3 people were only concerned about ME. Pretty much everyone else that played a significant role in my life let me know how much MY illness had affected THEM. Can you believe people said that crap to me at that time? I mean stuff like that was said to me just a few months after my entire existence was shattered. Oh well, live and learn. Remember what empathy is???????????????? Anyway, these 3 friends never even came close to saying anything like that to me. They just let me know how much they loved me and let me know that they would be there for me in a heartbeat, as I will for them for the rest of my life. They know who they are, I love you guys. 🙂
I have way more than 3 friends now, mostly due to the tribe.
When someone gets sick like this, it’s not about you at all. You want to help? Make it about the SICK person, not you. Not you AT ALL. Don’t let the person that is suffering know how bad you feel and that you’ve been so upset and affected by this. BELIEVE ME, THEY KNOW. If you can’t handle that, then stop being a caregiver but don’t add to the guilt that the sick person already feels. There will come a time when you can have conversations of that subject matter with that person but for the love of God, not within the first year or two.
I just received a comment on about this place that I think everyone needs to read so I made it into a brand new blog post. In my previous post, I was telling a story about a devastating experience I recently had involving an Eastern medicine practitioner. In that post, I said this…..
“I am more than well aware of the problems with Western medicine. More than well aware, I wish there was a word for how aware of that I am. But Eastern medicine has a crapload of problems too. There are not so great practitioners in every single discipline out there, East or West, so be very careful who you trust.”
Well it is stories like this that make me so very aware of the issues with medicine in the west. So very aware. Trust no one…………
“My son suffered a massive brainstem stroke a year ago at the age of 31. He had what they call “locked in syndrome.” We took him to RIC because it was supposed to be the best place in the country. Dr. Harvey was/is the Dr. My son’s stay at RIC was short, the place was disgusting…so understaffed, the nurses and aids apparently had no idea how to care for someone with this kind of stroke, not to mention his basic needs were not even being met. Having a rare stroke like this had Dr. Harvey’s attention of course. But he only saw my son 1 time in three weeks. When I met with Dr. Harvey I voiced my concern about his basic care not being met at RIC. He literally said..”this meeting is to get an update from his therapist and discuss his treatment.” He advised me to discuss those kinds of issues with the nurse manager. I was furious..Needless to say, I don’t care how good they say Dr. Harvey is, we moved my son to MarianJoy were he was treated with respect and dignity. Sincerely., a mom”
I’m sorry Lisa. As a therapist, I’m embarrassed, as should all therapists and especially doctors and nurses be. I’ll be emailing a bunch of people at the RIC with a link to this blog post, I think they might like to read it.
I’m sorry I haven’t blogged in a while. I’ve been busy living a quasi-pseudo-normal life. I surely haven’t been able to say that for quite some time. For over 3 years my life has been anything but normal. But it’s getting back to “normal.” Or as normal as things can be for me. I have a job, I have a boyfriend, I have an apartment, I have social engagements that I sometimes go to, sometimes don’t. Normal stuff. Kinda normal. Now when I use the term ‘normal’ to describe my life don’t let it be confused with when we, the stroke tribe, refer to ‘normals.’ I’m using the word ‘normal’ as an adjective, but when anyone in the tribe speaks of ‘normals,’ it is being used as a noun that refers to people who have not had a stroke or any other kind of brain injury and have never been through this hell.
Starting to work again has been a challenge, it’s been exhausting. I haven’t used my brain for intellectual purposes and had stuff I needed to get done in over 3 years and it’s been quite an adjustment but I’m getting the hang of it.
The 2nd picture is a recycled Grumpy Cat picture but………it makes me laugh.