My body will do WHAT?

In this special and interesting time in your life, you will notice some changes in your body that have occurred along with your stroke.  Don't kid yourself, it sometimes (ok, most of the time) stinks.  However, if you know about these things ahead of time, you can expect them and not be so surprised when they happen!  Nobody warned me, I just had to find out on my own.  Here are a few of those things....

"potty talk":  I'm not talking about saying nasty things.  When you lose muscle control on half of your body, I mean HALF, including those that, well, help you control yourself until you make it to the bathroom.  Most of us have been potty trained for years, but, guess what.....you get to start over.  Well, at least half of you gets to.  Plan ahead for these things.  Where I work, it's a VERY long way to the bathroom, and when you have to "go"  those weak muscles are more concerned about that than they are about walking.  So, not only is it hard to hold, it takes longer to get there.  I suggest you get some Depends (or whatever brand you fancy) pads...at least at first...they can help prevent some VERY embarrassing problems.  Good news, though.  As your muscles strengthen, so does your control.  Trust me on this one.
Update December 2005:  After a lot of frustration and denial, I finally admitted to myself that when I get tired for long periods of time, or get stressed out, my body reverts to energy-saving mode and bladder control is one of the first things to go.  This school year has been a doozy and we're half way through.  I don't see it letting up any time soon, so I let go of a little pride, and asked my doctor for some medication to help control it.  Wow!  What a difference!  I didn't realize just how much stress I was adding to myself by having to worry about the embarrassment of the whole thing.  The pills relieve not only the urge, but the anxiety of wondering when the urge was going to hit, and if I'd make it to the bathroom with my pride in tact!

"beautification":  If you are a girl and wear eye make-up, don't expect the eyelid on the weak side to cooperate.  It took me a while to learn to put on eye liner, and mascara with my lid bobbing up and down.  I got pretty tired of poking myself in the eye!  That, too, gets better.  Oh, and just try fixing your hair!  It's very hard to work a curling iron with one arm!  One thing that hasn't really cleared up is my eyebrow....when a girl puts on eye make-up, she has to raise her eyebrows to put it on correctly.  Well, try doing that with slow-to-respond muscles.  The eyebrows go up, but only the right one goes back down.  I walk around for the next few minutes looking sarcastic....unless I massage it and manually help it back into place.....

teeth brushing:  If you are used to putting toothpaste on with one hand, and holding the toothbrush in the other....FORGET IT!  I found a nifty way to do it.  Clinch the handle of the toothbrush between your teeth, bristle-side up.  Manipulate the cap off the toothpaste with your good hand and squeeze toothpaste on to the toothbrush.

more "potty talk":  When you first have your stroke and are in the hospital, or in a rehab center (the physical kind), don't expect to have ANY privacy in the bathroom.  They insist on escorting you and standing there, watching you to make sure you don't fall face first onto the floor.  I don't care what kind of body function you are dealing with.....you have an audience.  Just getting your clothing up and down equally on both sides is a feat in itself.  I thought about getting the aides those cards they use at sporting events to rate my clothing handling skills from 1 to 10.

sleeping:  If you are a "back" sleeper, forget it.  It's hard to breathe that way.  I preferred to sleep on my "good" side...still do.  In the hospital, they have these handy rails on the bed you can grab when you need to turn over.  Don't expect that kind of convenience at home.  I found that I couldn't roll over unless I grabbed the side of the mattress and pulled, or pushed, depending on which way I needed to roll.  Getting in and out of the bed was also lots of fun.  You may have to have help at first until you figure out a system for doing it yourself.

dressing:  I never knew I could so look forward to just getting dressed.  Those first weeks, getting dressed all by myself was both challenging and frustrating.  I felt such a sense of accomplishment when I was able to do it all by myself (remember, I was 38 with a 4-year-old daughter).  They tried to teach me to put on my shoes by propping my foot up on an ottoman.  Didn't work because half of me didn't work.  I felt like I was going to slide off and land on my head.  I licked the problem, though.  Sit on the edge of the bed, then turn sideways so your weak leg is bent and the foot is sticking out over the edge of the bed.  Your "good" foot should be on the floor.  It's much easier to reach your foot that way and get your shoe on without getting off balance.  You can put on your other shoe that way, but you have to be very careful not to fall.  I still put my shoe on my weak side that way.  When putting on a shirt, or bra, or housecoat, etc., put your weak side in first, then you can manipulate it into the right place with your "good" side.  Same with your pants.  You will probably have to sit to do that, and side-sitting on the bed is helpful for more than just shoes.  When your leg doesn't work right, you can't stand up and put your pants on.
               

                 
                  

falling:  Speaking of falling:  get used to it.  I have learned to roll fairly well.  It's still embarrassing, but embarrassment is not fatal.  I tend to drag my toe on my weak side, especially when I'm tired.  Boy, are there a LOT of uneven sidewalks!  Watch where you put your feet!  As a side note....the falling/rolling ability recently came in handy.  My riding lawn mower had a gas leak and caught on fire.  I was unable to get off it like I usually do, so I had to dive sideways to get off and avoid being barbecued.  I was able to hit and roll just like I do when I fall.  The only thing that hurt later was my shoulder!  The mower was a total loss.

fatigue:  That's a constant companion, at least at first.  I'm used to marathon cleaning days, especially on Saturdays (I'm a teacher and I work all week).  I found that I was able to do housework in small portions.  Break it up and do a little every day.  It will get done.  What's more important, your house, or your health?  When I cooked (I had to do that from the first week I was home), I made a lot of hamburger helper.  Brown the hamburger, sit, drain the hamburger, sit, add the ingredients, sit, stir, sit, etc.  It got done, but it took longer.  Now, I can marathon clean, and cook, no problem.  If I feel like I'm getting tired, I sit down for a few minutes in between chores.  Another thing to remember that they don't tell you is that, even after you have recovered most of your abilities, they are subject to removal.  What I mean is....when I get tired (like the last two weeks of school), some of my symptoms return until I take the time to really rest.  I have a harder time with my coordination and walking.  It's harder to "hold it" long enough to get to the bathroom.  And when I REALLY get tired, my speech slurs. It's scary the first time it happens, but you get used to it.  You also learn that that it is your cue to go take a load off and get some rest.

swallowing:  Since half of your muscles don't work correctly, swallowing is the pits.  You will probably see a speech therapist to help you out in that area.  Mine did a swallowing study to determine where the problem was (see the section on tests).  It turned out that all I needed to do was turn my head to the left to swallow, so I wouldn't get choked.  When I would get a tickle in my throat and start coughing, my face would turn beet red.  All the therapists would panic!  Of course a "serious" person like me didn't think it was funny.  HA!  Got to take amusement where you can find it sometimes.

take a ride on the mood swing:  Depending on just where your stroke is located, this may be a worse problem or it might not be so bad.  My stroke happened to be on the right side of my brain (with left side weakness).  After a few bouts of uncontrollable, can't-catch-my-breath sobbing at the mere mention of my daughter, the doctors decided I needed an anti-depressant.  I, for one, didn't think it was that unreasonable to be totally freaked out and upset to be almost 39, have an almost 5-year-old daughter, (both our birthdays are in the summer) and not have any use of my left side...it was completely paralyzed for a week or so.  They put me on Zoloft and had me see the rehab psychologist.  The crying jags eventually cleared up, but I still will sometimes giggle at inappropriate times (although, I've learned to kind of cover it), and I battle depression (duh), and I get seething mad at little stuff that I turn into big stuff before I realize what I've done.  It just takes over sometimes, and I don't seem to be able to put the brakes on it until I've already gone too far.  I don't get violent, my "melt-downs" just involve saying mean, hurtful things that I can't take back.  And even if someone points out or asks me if it's a melt-down, I will deny it because I don't realize at the time what it is....not until after the fact.  I just seem to feel this incredible sadness and frustration.  Some people seem to be the focus more than others (more on that later).  I've apologized more in the last year and a half than the rest of my life combined.  I've always been easy-going and slow to anger unless it was really important, but suddenly, I wasn't for the first year and a half after my stroke.  Anyway, be prepared for a roller-coaster ride of emotions.  Guess what?  Nobody thought to warn me!  The doctors just told me that the stroke had damaged the emotional control part of my brain.....HELLO DOC...it's a very common side effect (along with personality changes) that goes with a stroke.  Thankfully, they seem to clear up in most people!  Note that it doesn't give you free license to behave any way you please, just that the problem may be there, so you don't need to think you are going crazy.  It still takes work so that this new "winning personality" of yours doesn't become a permanent habit! 
Update November 2004:  The inappropriate giggling and the temper tantrums have pretty much vanished...two and a half years after my stroke.  It's a relief to feel emotionally human again and not so unpredictable.  I'm back to my old easy-going self.  I still have bouts of depression sometimes, but not nearly as severe as they used to be.  I have also been able to take half of the dose of Zoloft that I had been taking, but because of the depression, I may not be able to stop taking it completely.  Not the worst thing I can think of in life......
Update  January 2005:  Well, I discovered that brain damage can be insidious.  I had to go back to the full dose of Zoloft, because the mood swings intensified. I'll probably be on it the rest of my life.  But that's OK.  Sometimes I still experience the "melt-downs" although most of the time they aren't as severe or last as long.  They usually involve depression now instead of anger.  I still will occasionally have a big one, and I don't realize it has happened until it's over and have hurt someone's feelings.  That usually involves being swallowed up by pain and sorrow, which then causes me to whine, cry and write stupid emails until it's over with and out of my system.  Thankfully, they don't happen very often anymore....they just take me by surprise.

stroke extending:  This is another one of those little nuggets of information they forget to tell you.  Often, after a stroke, it will do what they call "extend".  I don't know if it's another smaller one on top of the stroke you just had a few days/hours ago, or if it's from brain swelling, or what (you'll have to ask the experts).  But when I first had my stroke, I was able to walk, with a limp, and I could swallow just fine, and do those little neurological "tests" the therapists have you do.  "Hold your arms out to the sides like you are trying to fly, bend at the elbow, and touch your nose."  I could do those when I went in to the hospital, but on the third day, I had suddenly lost the ability over night.  It was terrifying...was I dying?  Was I having some permanent damage that everybody had overlooked?   Had one of those crying jags.  The nurse decided that was one of those "I need my mom" moments.  By the time they moved me to the physical rehab building, I could not walk, could barely swallow, and could not open my hand out of a fist.  I also could not raise my left arm above shoulder height (my shoulder blade was "frozen").  Try fixing your hair with those problems!  The doctor got me into rehab right away, and they started working me (more on that in the LOVE that therapy section).  Gradually, my body parts started working again, although they never have regained everything.  But it's a livable level--unless I try to get in a hurry (refer to the potty section above). 





make me tingle:  Another thing they forget to tell you about, is that as your nerves begin to wake up and re-route themselves, you may feel tingling in the affected areas.  This can be pretty frightening, as it feels similar to the tingling you experience during a stroke.  My doctor (rehab) said not to worry unless it starts hurting......gee, THAT was helpful!  My PCA (patient care assistant) came in and I mentioned it to her.  She said, "Congratulations!  That means the nerves are beginning to regenerate!"  Sure enough, within a couple of days, my fingers started moving!  They had been totally useless and curled up into a fist for a week.  I woke up in the middle of the night with my pinkie finger wiggling.  It was GREAT!!  True to form (I do everything else backwards) my movement in my hand and fingers started w/ my pinkie finger and worked it's way to my thumb.  My index finger still isn't up to speed w/ the others and I have a tendency to neglect it.  Usually, in normal people, regaining control starts w/ the thumb and index finger and works it's way to the pinkie.

shake-rattle-roll:  Ok, this is one of the things they DO tell you about, but usually, not until it happens in front of one of them, or you ask.  You know how some people have a nervous habit of bouncing their leg up and down when they are sitting?  Well, guess what?  Your leg (or arm) just takes a notion sometimes and does it all by itself.  Sometimes, it's when you put it in a certain position.  Sometimes, it just decides it's a nice, inconvenient time to exercise itself.  It doesn't hurt, and the rhythmic bouncing is kind of comforting sometimes.  Anyway, my physical therapist discourages his patients from doing it, but I'm rather hyper, so sometimes, I just let 'er bounce!  (I also tend to be a teeny bit defiant at times......but I'm convinced that being hard-headed and stubborn got me where I am today in my recovery.)  There is an official medical term for it, but I can't remember what it is.
Update: November 2004:  I am now able to walk a mile with my daughter (usually while wearing some kind of ankle support) and exercise without much modification.  I still have those days when my balance is unstable, but I've learned to compensate and "catch" myself most of the time.  I rarely even fall anymore....except when I'm not really paying attention to what my feet are doing. 
Update: October 2005:  I've learned that abilities can come and go.  Last fall I was able to work up to walking a mile with Hannah.  I can't right now.  The reason seems to be tied to my level of rest.  When I'm tired, I limp more, I fall more and just generally have a harder time physically.  We started this school year with a bang!  New administrators, new ways of doing things and lots of meetings to get ready for state testing later on this year.  I haven't even had time to go work out  this year and by the time I get home, I'm so tired I don't get much done because I have to stop and rest.  Anyway, I've fallen more lately because my leg protests and my foot "waves" from side to side rapidly when I lift it off the floor, when I get this tired.  Hopefully, things are starting to ease up and I can get back into the exercise routine!  I have no doubt that it will eventually get better.  It's done this before when I've gotten over-tired for a long period of time.
Update:  Feb 2006:  I thought that my schedule had finally calmed down so I could go back to working out at Curves three days a week.  Unfortunately, that only lasted for a couple of weeks.  I really enjoy walking as an exercise, but Missouri weather is unpredictable, so I got myself a treadmill.  As an added benefit, I have something to hold on to and there are no rocks or uneven surfaces.  I'm starting to feel better again, and hopefully, the weight loss and improvement in strength and flexibility will pick up where it left off!  Another plus...when I went for my three-month check-up, my blood pressure was down from the previous visit!

Forget-me-not:  Ok, maybe I will.  For the first several months after my stroke, my short-term memory was fried.  I could remember things clearly from before my stroke, but short term things would slip just out of my reach and hide from me.  For instance: at school, I would hand-write a hall pass for someone to go to the restroom, then five minutes later, notice them missing and ask where they were.  One of my students that I had several times a day, appointed herself my "memory".  It's hard for people to understand that things can slip away that easily, but they can.  It's disconcerting to say the least, but it happens.  It does get better and playing "thinking" type games (like Sudoku, and Memory) help to exercise your brain.
Update: December 2006:  After getting married in June and moving to a new house, I started a new teaching job in a new district.  Boy, does your memory take a beating when all that happens in the span of two months!  My husband and family have expressed concern about my "blank" moments.  These happen when somebody asks me something totally unrelated to what I am doing at the time.  It seems to catch me totally off-guard, and my mind just goes totally blank.  It's been pretty scary until about a week ago.  My husband and I have discussed it a lot lately.  We finally had an "a-ha!" moment.  It's not the short-term memory giving me fits now, it's my brain's ability to switch topics.  We realized that I do fine as long as we stay on topic, but if someone asks me something off-topic, out of the blue, my mind shuts down and goes blank.  It's like an old car that has a delay when you step on the gas peddle.  It needs a few seconds to "catch up".  My brain is working like that now.  (I have to face it, I have some residual brain damage that doesn't just affect my physical abilities and mood.)  As long as someone gives me a frame of reference, or a hint that they are going to change the topic of conversation to a new topic, and they clue me in on what it is with a little background information, I'm fine.  That discovery has been a huge relief because after the short-term memory is almost back to normal, it was VERY disturbing to just go blank.  My family and husband were getting all worried (I was, too, but wouldn't admit it.)

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I guess the point of this particular page is that there are many strange things that will be happening to you.  I have in no way covered it all, or everything that could happen, these are things that I've had happen to me, and I add more as I remember things, or when new things happen.  But developing the ability and the attitude to adapt to these things will help make life so much easier.  After all, you didn't invite the stroke in, and you can't just ask it to leave.

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