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Bells and Whistles

When you’re in the hospital, you might be hooked up to all kinds of different wires and machines.  When you’re in the ICU this is definitely going to be the case.  It’s pretty traumatic to see a loved one hooked up to all that stuff.  Some of it is going to be noisy and may freak you out.  Try not to let all the sounds scare you, most of those noises are to alert the nurses to something, that’s all.  In PT school when we were learning about what all those machines were for, they were collectively referred to as all of the “bells and whistles” in a hospital room.  These are all of the bells and whistles that I had.  I’ll start at the head and work my way down.

So, in my skull, they placed an external ventricular drain to allow extra fluid to drain out.  It’s a device that allows the inflammatory fluid to drain out.  Otherwise all that fluid would have nowhere to go and there would be a lot of problems.  Here is a picture of an EVD.  So for a while I had a bald head with a tube coming out.  Oh my God that must have been scary to see.  They never removed my catheter(the part that is placed in the brain), only the tube that drains it.  I will forever have it in my head.

I had a ventilator for a few days.  This is a machine that breathes for you/helps you breathe when your own breathing is insufficient.  I think I only needed this for 2 days, soon I was “over-breathing” the ventilator.  I learned that a normal respiratory rate is 12-15 breaths per second.  The decision to place someone on a ventilator comes about because of a lot of different factors and ventilators can be set at different breathing rates.  Do not watch this being put on or taken off a loved one, trust me.  I had an oxygen monitor on my finger.  It’s the little clip that is always falling off your finger.  It tells the nurses how much oxygen your body is getting.

I had an IV in my arm.  I probably don’t need to explain what this is, you can do a lot with an IV.  IV stands for intravenous in case you didn’t know.  Also on my arm was a blood pressure cuff that just had to be there constantly for a while.  I had a main line in my femoral artery.  This means that I had a tube inserted into the main artery in my leg right below the groin.  Femoral line

For a while I had a catheter inserted to drain my urine.  Gross.  Nobody wants a catheter.  A tube was inserted into my bladder and drained periodically.  Ick.

I had “leg squeezers“(bottom of page) for a while.  The purpose of these is to prevent a clot from forming.

I think that was it.  Once I was off all of the machines, I had my vital signs taken a few times a day manually.  When you’re all hooked up to everything, the nurse can just push a button and vital signs appear.  Vital signs are usually blood pressure, pulse, respiratory rate, and temperature.  I had my blood drawn more times than I care to remember.  It wasn’t much fun to be hooked up to all that stuff.  But it’s an experience I will never, ever forget.


Speech Therapy

Today in speech therapy I had a laryngeal stroboscopy.  This is where they stick a camera on the end of a tube and stick it in your mouth to look at your vocal cords.  The goal of this is to see if the vocal cords are doing what they’re supposed to be doing.  I had my first stroboscopy on January 18, 2012.  My stroke was on March 7, 2011 so my first stroboscopy was 10 months later.  My vocal cords could not even be seen on my first one.  There was too much inflammation and all the muscles that control the vocal cords were too tense.  My vocal cords were there, just not doing what they were supposed to do.  Today, May 29, 2012 I had another stroboscopy and the picture was so much better.  My vocal cords were clearly visible and even looked pretty good.  They’re not doing exactly what they’re supposed to be doing but it’s a heck of a lot of progress from January.  I want to give a shout out to my speech therapist, Anette Neff, who I think is really cool and very good at her job.  Cool site with lots of videos of stroboscopies


Individualized Therapy

When I say therapy, I’m encompassing all therapies.  That means physical, occupational, and speech.  After I had a stroke, I realized some stuff.  Some of this stuff it seems should be common sense but it’s not.  We learned about strokes in PT school, but as far as I know, none of those professors had personal experience with a brain injury.  Well, I do unfortunately.  There is nothing – no amount of education, you can have a PhD in strokes and be considered an expert – that can come close to preparing you for what you’re in for after a stroke.  We did learn about strokes, the different kinds, treatment, etc.  However, when I had a stroke I found that the opposite of some of the stuff I learned was true for me!  My goal with this post is not at all to put down therapists, I am one!  There are certain, standard things that you’re going to need to know.  My goal is to tell you that you should do your own research, take your rehab into your own hands.  Your therapy should be very individualized.  If something isn’t working for you speak up and tell your therapist!   There is lots of other stuff that can be done.  Work on what you want to work on and what you think you need to work on.  This is your time and you are paying for this therapy – it’s yours!


My Gait

Gait just means the way you walk.  In PT school, we were taught to look for certain things when evaluating someone’s gait.  Well, after the stroke I was lucky to stand up.  My gait – terrible to say the least.  I could not walk unassisted (this means doing something without a PT holding onto you or using a cane, walker, etc.).  The progression should go something like this – wheelchair to walker to cane to nothing.  This is exactly what I did.  At first I was wheeled around in a chair, I progressed quickly to a walker, used a cane for a while and now I walk completely unassisted.  There is a lot of variation here – you’re going to do what you need to do.  You might need an AFO(ankle foot orthotic) or other types of orthotics, braces,etc.   I’ve said this before – I was very, very lucky in that I was able to walk soon after the stroke.  It was pretty ugly, but I could do it.  For a few months it felt like my right leg was lighter when I would walk.  Lighter is the only way I can think of to describe it.  I couldn’t get my right foot in the right place because of the ataxia.  My right leg felt like it was going to float away.  It doesn’t feel like that anymore.

Here’s a tip – when evaluating someone’s gait one thing I was taught to look for was what the trunk and arms are doing.  The trunk should rotate slightly and the opposite arm should swing forward when a step is taken.  So one thing I did that really helped is purposely swing my opposite arm forward when the leg took a step.  I would exaggerate this movement. Normally, you shouldn’t have to think about this but after something happens to your gait, you’re going to have to think about everything.

Now, my gait isn’t normal but I can walk by myself.  Can’t run yet though, that’s a goal of mine.



The stroke was caused by a blood clot. So I was put on Coumadin(Warfarin) for 6 months. I have learned that this is standard after a blood clot is discovered. You have to take Coumadin(a blood thinner) for 6 months. Coumadin does not dissolve a clot, it prevents one from forming. If you already have a blood clot you have to wait for it to go away. And it will generally. Blood clots are usually reabsorbed by the body after a while. During those 6 months, when I was still on Coumadin, a member of my medical staff said to me “you know that’s rat poison right?” Coumadin was originally marketed as a rat poison but when used in the right dosage it’s an effective blood thinner for humans to take. I wouldn’t want to take it long term but it was effective when I needed it. Note to medical personnel – DO NOT, I REPEAT, DO NOT TELL YOUR PATIENT THAT THE MEDICATION THEY ARE TAKING IS POISON!! Even if you have a great relationship with this patient, DO NOT say something like that. I couldn’t believe he said that to me. Well I was able to stop the Coumadin after 6 months and now I just take one baby aspirin a day to try and prevent another blood clot. That’s it! Don’t start taking aspirin without talking to your doctor. There’s a lot of stuff you might be prescribed after a stroke – this is what I had/have to do.



Some people say some pretty ignorant things to me sometimes.  It makes me crazy but I tell myself that they don’t know any better.  It’s going to take me years to recover and I might never be the same as I used to be and I might never be able to do the things I used to do.  I just choose to be around certain people as little as possible.  A stroke survivor can’t just “get over it” and any lack of progress you think you may see is definitely not because they’re not trying hard enough.  So, if you choose to be around a stroke survivor, learn to say the right things.  People with brain issues are already extremely frustrated, don’t make it worse.  Be sensitive to them!  This post sums up my feelings pretty well.



In this nation, we have sick care. Most other countries have preventative care, not us. This means that in other countries they are more focused on preventing you from getting sick, here we are more focused on treating you once you’re already sick. Take it from me, it is way, way, way, way cheaper to prevent an illness than to treat it after the fact. You don’t want all those medical bills from hospital stays, tests, bloodwork, therapy, etc. It gets extremely expensive. You don’t want to be sick – so don’t be. Take responsibility for your health now before something happens. If you’re overweight, lose weight. If you smoke, quit. If you drink too much, stop. If you eat like crap, eat healthier. And don’t ever let soda touch your lips again!!



Good balance depends on 3 things.  These are your vision, vestibular system, and proprioception.  I described proprioception in an earlier blog post.  The vestibular system is in the inner ear and controls equilibrium.  In school, one way we tested our balance was by doing the Foam and Dome Test.  The first thing we would do is time how long we could just stand there without shoes.  Next, a dome was put on our heads, this took away our vision so we were only relying on our vestibular system and our proprioceptors.  Next, with the dome still on our head, we had to stand on a piece of foam and this took away our proprioceptors so by the end of the test we were relying solely on our vestibular system.  You can’t really do anything to mess up the vestibular system.  It’s a test for balance and it tells what needs to be worked on.  There are different variations of this test.  After my stroke, I had terrible balance.  The vestibular system goes to a lot of areas in the brain but some of it is controlled by the cerebellum.  Proprioception –  controlled mostly by the cerebellum.  My vision was OK after a month.  So I had 2 strikes against me.  My cerebellum was damaged and therefore both my vestibular system was messed up as well as my sense of proprioception.  Now, my balance is far from normal but sooooo much better.  I can now balance on my right leg for 20 seconds.  If you want to learn more than you ever wanted to about balance, go here.  (This link downloads a powerpoint presentation)


Shoulder Pain

After my stroke, my right shoulder would hurt periodically.  There is NO WAY that it was subluxed.  A subluxation of a joint is like the step before dislocation.  The bones of the joint aren’t matching up correctly.  After a stroke this happens because the muscles that hold the shoulder in place become very weak.  The shoulder is an inherently unstable joint anyway and it relies on its musculature to keep it intact.  Some joints rely more on their bony configuration.  It is generally thought that shoulder pain after a stroke is caused by the shoulder subluxing.  This definitely was not true in my case.  This blog post by a stroke researcher states that the number one cause of shoulder pain after a stroke is from adhesions that form in the joint, not subluxation.  So what will help adhesions?  Stretching.  This is especially important if you have lost range of motion.  I lost no range of motion after my stroke, I was lucky.  But I stretched a lot.  It helped my shoulder pain.  I have no shoulder pain anymore.



You know when the doctor bangs you on the knee?  He’s testing your reflexes.  You probably already knew that but I’m going to tell you some stuff I bet you don’t know.  Reflexes can tell a lot about what’s happening inside the body.  When your reflexes are tested, what is being looked for is if they’re equal on each side.  Hopefully, your reflexes are normal.  When they’re bigger than normal that is called hyper-reflexive.  When they are smaller than normal that is called hypo-reflexive.  After a stroke, your reflexes will be hyper-reflexive and this is why….When you have a stroke there is damage to your central nervous system.  This consists of your brain and spinal cord.  When the central nervous doesn’t work correctly, the peripheral nervous system(all the nerves that go out to your muscles and organs) is allowed to go wild because it is not being controlled properly.  The central nervous system keeps the peripheral nervous system in check.  One funny thing that happens to me is that when I step on something with a bare foot on my right side, my right leg responds by kind of going crazy.  When I step on something the reflexes on that side are not being controlled properly so my right leg pulls up really fast and high.  It’s nothing like it used to be though.



Ever wonder why the left side of the brain controls the right side of the body and vice versa?  This is why….whenever you touch something or move certain nerves need to tell the brain what just happened.  At some point, these nerves cross over to the other side of the body then end up in the brain.  When a nerve tract crosses over to the other side of the body it is controlled by the contralateral side of the brain.  There is a center of the brain that controls sensation.  However, some things are controlled elsewhere in the brain.  This brings me to the cerebellum.  The cerebellum is what we call ipsilateral.  This means that the cerebellum controls the same side of the body.  My right cerebellum was badly damaged so I have much worse problems on the right side of my body.  As far as sensation is concerned, the cerebellum controls balance, posture, proprioception, etc.  Not the sensation you get when touching something.  So what is proprioception??  Proprioception means where your joints are in space.  This is one way to test proprioception….close your eyes, have someone else wiggle a toe then hold it in the up or down position.  Can you tell whether it’s up or down with your eyes closed?  That’s proprioception.  Mine is kinda messed up.  It’s getting a lot better though.  This site explains everything, kinda scientific though.


Types of Strokes

You’re going to hear a lot of words when you have a stroke.  Ischemic, hemorrhagic, embolic, thrombotic, lacunar….what do they all mean?  Well, I’ll tell you.  A stroke is caused when something happens to a blood vessel in or to the brain.  This can be due to a blood clot(ischemic stroke) or a bleed(hemorrhagic stroke).  Oxygen is carried in the blood so when something happens to an artery, that oxygen does not make it to the brain and the brain needs oxygen to work correctly.  If an artery is compromised for long enough or severely enough, you have a stroke.

Now, an ischemic stroke can be thrombotic, embolic or lacunar.  (More on lacunar strokes later).  A thrombus is a blood clot and an embolus is a blood clot that gets dislodged and moves around in the body.  So, a thrombotic stroke is caused by a blood clot in an artery that originated in/to the brain and an embolic stroke is caused by a blood clot that originated elsewhere in the body, dislodged and made its way to the brain.

A hemorrhagic stroke is caused by a vessel bleeding into the brain.  There is a hemorrhage in the brain and this needs to be treated very differently than a blood clot.  I have found that the term ‘hemorrhage’ is much preferable to the term ‘stroke.’  People generally don’t like to say they had a stroke.  Well, anytime there is a bleed in the brain that’s a stroke.

So then what’s a lacunar stroke?  I think of a lacunar stroke as a stroke that occurs really deep within the brain.  A lacunar stroke can be ischemic or hemorrhagic and happens to a smaller vessel deep within the brain.  Most strokes occur on the surface of the brain.

I had an ischemic stroke.  This is rare for a young person.  Everything that happened to me is pretty rare.  If a young person has a stroke usually it’s hemorrhagic, however ischemic strokes are more common as a whole.   No one knows where my clot originated so it could’ve been either thrombotic or embolic.  I hope to never have another blood clot.  🙂  Hope this was helpful!



A stroke is a brain injury, not a muscular injury.  It may seem like your muscles don’t work anymore but they do, they’re still there and just as good as they once were, well at first that is.  Soon atrophy starts and that’s when your muscles will look less developed.  But the actual stroke doesn’t affect the muscles.  You just have to work a hell of a lot harder to use them and learn to use them again because the signal to them from the brain is messed up.  That’s why the physical therapists make you do all those weird exercises.  They want to make those signals work again, or make new signals.  They’re trying to neuroplastically change the brain.  You know the phrase “use it or lose it?”  It’s true.  Before the stroke, I could just move every direction, every way, upside down and forward without thinking about it.  It was second nature to me.  After the stroke, I had to ‘learn’ how to move again.  This is called motor learning.  I wasn’t learning how to move in the traditional sense, I knew HOW to move cognitively, my muscles just didn’t cooperate.  I had to ‘learn’ to use them again.  So now I don’t really weight train, well sometimes I do, but I try to do everything I can by myself.  Every time I do a ‘new’ movement, or ‘old’ movement, I’m helping to rewire the brain.  Neuroplasticity takes a lot of repetition.  You know how athletes get better?  Lots of repetition, they’re ‘rewiring’ the brain.  Use it or lose it.  Love this.


What are YOUR Goals in Therapy?

I’m going to write a post here for all the inpatient therapists that might stumble across this page.  My advice – GET RID of the question “What are your goals?”.  Before I had my stroke, I was a physical therapist for 4 years.  In that time, I worked solely in outpatient orthopedics.  This is a standard question that we’re taught to ask.  My opinion, in the outpatient population – important.  These patients have dealt with their issue for a while, know what their limitations are and what they would like to be able to do again.  I think that this goes for any kind of traumatic event but I have personal experience with a brain injury so I KNOW it applies to strokes and TBIs.  DO NOT ASK THESE PATIENTS WHAT THEIR GOALS ARE IN THERAPY!  After I had my stroke and woke up from brain surgery, I was in serious, serious shock and denial.  I had absolutely no clue what my deficits were let alone what areas I needed to improve.  Yet, I was wheeled to the therapy room and every therapist I saw asked “so what are your goals?”  Seriously?  I thought my life was over.  Please don’t ask your patients that have just endured a traumatic event about their goals because they have no goals.  These patients are scared, confused, and in shock.  Their only goal is to be back to normal, to make this not have happened and they don’t understand yet that they’re going to be dealing with this for a long, long time – possibly forever.  You might be the most caring therapist in the world but take it from me, looking back that question is going to make you seem very insensitive.



When there is a problem with the cerebellum, along with an intention tremor you also may have ataxia.  I have very ataxic movement.  Ataxia means a problem with coordination.  Every time I was evaluated by a doctor, one thing they would have me do is touch my index finger to my nose then to their finger and repeat that a few times.  This is called – cleverly – the finger to nose test.  This is to test for ataxia and can also test for a tremor.  I had problems doing that, still do.  I can do it, but it’s a lot slower and less steady on my right side.  When I go to push a button on the microwave I have problems coordinating that movement.  I’m all over the place, my hand can’t go directly there.  This is ataxia.  Then when I get to where I want to be with my hand, like a button on the microwave, I start shaking because my intention tremor kicks in!  It’s a double whammy.  But it’s OK, it’s getting better.  For more information on ataxia go here, good site.