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After I had my stroke, I was scared of everything.  Every sensation that I had anywhere in my body freaked me out.  If I felt something weird in my head or neck area, that would terrify me.  I got a lot of headaches right after the stroke and they would absolutely horrify me.  What scared me the most though was whenever my ears would ring.  The medical word for ringing ears is tinnitus by the way.  That used to scare the bejesus out of me.  Tinnitus was the first symptom I had when I stroked.  I guess it actually wasn’t my ears ringing, it was just a really loud noise in my head.  Anyway, that really used to scare me.  It doesn’t anymore.  I’m no longer scared that I’m going to have another stroke when I feel something weird.  Weird things have stopped happening, too.  I now about once a month get a bad headache whereas it used to be every few days.  All the strange sensations in my head/neck really don’t happen anymore.


Complementary and Alternative Medicine

There is this thought in alternative medicine that doctors don’t want you to get better because then they wouldn’t make any money.  Well, I don’t think that’s quite true.  I really don’t think that any medical doctor is consciously trying to keep you sick.  I think they would prefer that you got better.  As a physical therapist, I was considered part of “western medicine.”  I genuinely wanted my patients to feel better, maybe too much.  There is something to be said though that if no one ever got injured and needed therapy no one would come see me and I would’ve been out of a job.  I always used to say if everyone in the world had perfect posture I’d be out of a job.  Not true, of course.  :)  Well, last year I got really sick.  I almost died.  When I was in the ER, I had some doctors whose number one priority was DEFINITELY not me living through this and getting better.  That’s messed up, really messed up.  So I don’t know, I’m super confused.  Now I do some things that are considered alternative medicine.  I’m combining Eastern and Western medicine.  I’m certainly not going to ignore everything I am told by the Western doctors but I am doing my own research and adding my own things.  I suggest you do the same.  Alternative Medicine


Weight Loss

If you need/want to lose weight, don’t do it the way I did it.  There are much better ways.  Join Weight Watchers or something.  I lost about 30 pounds throughout this ordeal.  30 pounds that I needed to lose so now I look pretty good but I don’t recommend having a stroke to lose weight.  Like I said, there are much better ways.  There are also better ways to get a new haircut.  Just go have someone cut your hair, don’t have your head completely shaved because of brain surgery.  That sucked.  Hmm, strokes are not on the list in the attached link… 🙂


Task Specificity

Task specific training is exactly what it sounds like.  If you want to get better at a specific task, practice that task.  Athletes do this.  If you want to be a really good pitcher in baseball, what do you do?  You pitch a lot.  Every day.  If I had a soccer player in physical therapy – after I did all the therapy stuff to strengthen her muscles – the last thing I would do is have her kick a soccer ball.  That’s what she wants to get back to so we would practice it.  My mom said I should write everyday with my right hand.  She’s right, I should.  That’s task specific training.  I don’t do enough.  I workout a lot and do a lot with my right side but I don’t do any task specific training.  If I went back to a formal therapy program I would have them focus on task specific stuff.  But I won’t go back to therapy because it really depresses me.  So I need to do more on my own.  Task Specificity


The Stroke Recovery Blog

I love this blog.  If you’re a stroke survivor reading my blog, you should be reading this blog… every post.  Peter G. Levine you rock!  Stroke Recovery



It is said that after a stroke proximal movement recovers before distal movement.  Proximal means “closer to the midline,” closer to the body.  Distal means further away.  So, your shoulder should recover before your hand.  This was true for me.  I have an intention tremor and my right shoulder shook less way before my right hand.  They still shake but it’s better, so much better.  They used to shake if I moved at all.  I used to have to sit on my right hand to make it stop shaking.  I still can’t really use my right hand, and I’m right-handed – that SUCKS!  Now it shakes when I try to carry a glass of water, press a button, write, etc.  If I’m at rest there’s no shaking.  My shoulder barely shakes.  It does, but barely.  I can’t even think of a scenario to write about.  I’m hoping eventually my whole right arm will recover.  It’s the same with anything else, you have to re-wire the brain to use that limb properly.



I never fell after I had a stroke, not once.  This is highly unusual.  Generally, it’s not an if thing, its a when thing.  It’s not if a stroke survivor falls it’s when a stroke survivor falls.  I’m going on a year and 4 months with no falls.  That’s not the norm.  There is a statistic that 70% of stroke survivors fall within the first 6 months.  I don’t know why I never fell, I certainly wasn’t always as safe as I could be.  I think I’m just lucky.  If you can avoid a fall, obviously do it.  The main reason, there are lots of reasons, but the main reason is that you don’t want to hit your head and cause any more inflammation in there.  That would be bad – you’ll already have plenty of inflammation in your head.  My advice – really work on your balance.  Balance alone, balance when walking, balance when reaching for things, balance when standing up from sitting down.  Your physical therapist will tell you what to do.  Read this



On Tuesday, I saw the guy who saved my life, no those aren’t the right words.  He prevented me from dying.  I had only seen him twice before.  I had an appointment with my neurosurgeon on Tuesday – a follow up visit a year and 4 months after my stroke.  I’m obviously pretty grateful to this guy.  He did something amazing even when my initial doctors botched everything up.  (I had to get that dig in there.)   🙂  He sang a little bit of a different tune on Tuesday than what I was told when I got sick.  He said that while I will still have some improvement, this is pretty much it as far as recovery goes.  I don’t believe that at all, not even a little bit.  A doctor will always give you the worst case scenario but as a therapist I know that improvement can happen years after a stroke.  It still sucks to hear that from a doctor though.  But he was wrong, I wish they would stop saying that!  Stroke survivors are generally given a finite amount of time to recover but it’s just not true.  The brain changes and adapts for the rest of your life.


In the Hospital

Hospitals are so much fun.  It took me a while to really understand what happened to me.  When I was in the hospital and had been told I had a stroke, I didn’t get it.  I just knew I could barely speak.  I started comparing myself to everyone I knew that had had a stroke, which you sooooo cannot do.  I even compared myself to my dog.  My dog, Cassie, had a stroke a year before I did.  I think I’m the only person in the history of mankind that that has happened to.  I’m so unique! 🙂  Anyway, I remember saying “Cassie still has deficits.”  I compared myself to a dog.  Ummmm.  I also asked for the English version of Rosetta Stone.  My dad bought me an iPad for in the hospital and I had gone on the internet and found something by a woman who had a stroke and recovered her speech using Rosetta Stone for the practice of speaking/pronouncing things.  So I asked for it, I had no idea.  It wasn’t for me, but I think it can be useful for some people.  Months later my dad found this hilarious and said to me about asking for the English Rosetta Stone – “you didn’t forget the English language!”  I’m a big fan of Tosh.0 and I was watching it in the hospital one day and Tosh had on an interview that I’ve seen since and was so obviously not real but at the time I thought it was.  My brain was not working right.  Aside from that viewing of Tosh.0 I had on TBS for a month straight.  That was my channel of choice in the hospital.  One of the biggest things I remember is for a long time it was extremely uncomfortable to turn my head.  Not tilt it, just turn it.  I remember being in my hospital bed and trying to look at everyone and it was awful to look to my right or left.  That’s still not a favorite of mine but NOTHING like it used to be.  Ahh, the good old days. 🙂


Dog Walking

Last night I took my dog for a walk all by myself for the first time since my stroke.  I cried.  I love my dog.



Up with the Good, Down with the Bad

Whenever you have an injury to one leg, up with the good and down with the bad is what a physical therapist will tell you about how to climb steps.  You should go up leading with the good leg and go down leading with the bad leg.  The same goes for hemiparesis after a stroke.  Hemiparesis is one-sided weakness and will be the term used after a stroke for being weak on one side.  I wasn’t really weaker on one side but the ataxia made it very hard to coordinate the movements of my right side.  When I first stroked, and for a long time afterward, this is how I would climb up and down steps.  I would hold onto a railing with my left hand(the “good” hand) and lead with the good leg going up, bring up my bad leg to the same step, then do it again.  Going down steps I did the opposite.  So for a while I was climbing steps one at a time.  I don’t have to do this anymore.  I can climb steps reciprocally(one foot in front of the other on each step) – normally.  I still hold onto a railing, particularly when going down, but I don’t have to take them one at a time anymore.



I haven’t posted anything significant for a week so I thought I’d write about spasticity although I have none.  A cerebellar injury will not cause spasticity.  Most strokes however will cause spasticity.  Spasticity is a velocity dependent tone to the muscle.  So what does that mean?  That means that a muscle, say your bicep, is always contracted and “on.”  So your elbow is always bent.  It attacks some muscles more than others.  The velocity dependent part means it gets worse the faster it is moved.  I remember the very first patient we touched in PT school had spasticity.  She was incredibly open to us touching her arm but we were all scared to do it.  It’s nerve wracking putting your hands on a patient for the first time.  Now I have no physical boundaries with people, I have no problems touching people.  🙂  That sounds weird.  Anyway, spasticity occurs in degrees and can be very painful.  Imagine your elbow constantly bent – that would hurt.  Treatment from a physical therapy standpoint is to keep that muscle as long as possible with very slow stretching and range of motion.  Also, you’d want to strengthen this muscle – and the opposite muscle.  So if the spasticity is affecting your bicep you’d want to get the tricep really strong.  I’m glad I have no spasticity, I think it would be very hard to deal with.  If you have it, it will get better as the brain heals.


Outcome Measures

Outcome measures are some of those tests you take at the beginning, middle, and end of therapy to see if you’re improving.  Some of these are things like how bad your pain is, how fast you can walk, how long you can balance, how much trouble you have with opening jars, etc.  Well, in my therapy there was this one test where I had to wet a washcloth, button a shirt, draw a straight line, pour water into a cup, and some other stuff.  By the time I was discharged from therapy I was pretty good at all that stuff.  That’s great.  I’m glad I’m 31 years old and can pour water into a cup.  Wonderful.  A therapist wants to get you “functional.”  Functional means you can do things like pour water into a cup, brush your teeth, walk independently, etc.  They want to make sure you can function.  When you can do these things and are considered independent and functional, you’re discharged from rehab.  Well I’m extremely functional, but that certainly isn’t my end goal.  My goal is to be back to normal, to doing absolutely everything I used to do.  Soooo, I’ll be doing a lot of this work on my own.  Improvement occurs very very slowly after a stroke and for years and years afterward.  If you want to return to an activity, do that activity.  A lot.  Don’t think that when therapy ends you’re done improving.  You’re kind of just getting started.