others perceptions of a stroke victim

[Guest bcbcbc]

It really is reassuring to have others experiencing similar things. I am blessed with few outward signs of having had a stroke during the holidays last December. A life changing experience for me, but one that few really seem to understand.

 

Now as time passes, I am more comfortable sharing some of my experiences with friends and co-workers, but it took a long time before it was comfortable. Few realized that, as good as I look now, I initially really could not use my right side, and had slurred speech. I was grateful movement came back, and speech slowly cleared. Health professionals offered a wait and see what comes back attitude, once outward physical progress was seen.

 

But what none realized was how long it took the thought process to evolve so I could express myself without hesitation. How long it took to be able to laugh out loud, I looked back in a journal and it was several months before that happened. Crying was inappropriate, sad occasions I did not cry at, little things brought tears.

 

I work in the health field, and found more assistance from others on networks and forums such as this to encourage me and give me ideas for helping myself.

 

So now I try to teach, one to one, so hopefully understanding will pass to others in their families, to others who end up in our place. We are the only ones who really can teach those who have not been here.

[Guest phi]

There appears to be a complete spectrum of other people's perceptions of a stroke victim. Perhaps the easiest to comprehend are the most physically disabled; let's face it, they are the poor buggers whose wounds are going to be dressed etc., never mind their cognitive abilities. At the other end of the spectrum there seems to be a, "Wow, what the hell was THAT!" reaction before things get back to normal (after one redefines the word 'normal' of course!).

I'm still very, very new to this topic (stroked 6wks ago) and would probably ask what motivates someone in the 'middle-ground' to, say, carry a cane, or use a hand-held calculator, etc. Are these things to be used as props or tools?

[Guest kathyinhouston]

This is a good one. Our best friend who comes and takes John out to lunch, picks him up for me from the VA hospital ocassionaly, called and asked me if I thought that John could babysit her 2 year old daughter while she went to get a hair cut. Her 2 year old is a whirlwind of activity. She "forgot" that John is paralized on his right side and to do anything that requires moving takes him a very long time. I really think it must be that you have to live with someone 24/7 to "get it".

[Guest hwstock]

Hello,

I was just wondering if any others have had people tell them "well, you look alright" when you attempt to explain why you are unable to function at a pre-stroke level.

I have had people accuse me of "faking" when I explain my limitations. I ask them if they would be happier if I had a more visible disability, like an amputation. That usually makes them angry, but I feel like they display a great deal of ignorance on their part by virtue of their actions.

I didn't expect to add more to this debate, but I had a very odd experience, repeating again today, which brought home the amputee analogy.

 

First off, I have recovered many capabilities beyond the wildest expectations of doctors and friends. Most people are quite shocked to find out I am a stroker. But one of strangest residua has been my inability to remember events that involve my right hand or right peripheral vision, unless I make a special point of thinking consciously about those actions. I hike a lot where there are no trails, so I started carrying a mapping GPS (global positioning system) with me; by keeping a track of where I've been, the GPS acts as a sort of electronic short-term memory. I'm getting btter, but I still have lapses.

 

Saturday I went on a hike with two parts; the first was a fairly easy hike to the top of the mountain, and there were 17 people for that part. Then 6 of us went down the cliffy south side of the mountain, which involved route-finding and serious climbing: The hike.

 

But before I headed down for the hard part, my GPS snagged a rock and unclipped from my pack. When I saw the GPS was missing a minute later, I went right back to where I had hit the rock, but the GPS wasn't there; someone had picked it up, and as a joke, was hiding it from me. The GPS suddenly reappeared later near my pack, and I concluded that I must have unclipped it without any memory of the event. I grimly thought I was suffering a relapse, to the times when I did things and didn't remember my actions. I calmed myself, and a minute later thought of another explanation: someone was playing a trick.

 

As it turned out, one of my friends had to convince the trickster (whom I didn't know) that it would be a bad idea to keep the GPS from me until the end of the day.

 

I tried to find out who wanted to play the trick, so I could tell him why it was not an appropriate trick for me. I had no intention of an angry confrontation -- I just wanted to let him/her in on my little "secret," so this incident would not be repeated.

 

I was not prepared for the following reaction. One person, who knew about the stroke, thought I was grossly overreacting. I explained it this way: if an amputee took off his artificial leg, would it be funny to hide the leg from him?

[bruceh]

some people can be so cruel! i can never understand a person calling a stroke "overreacting" or just faking it !! its just not polite.

[Guest phi]

I guess the keyword here is "tangibility". It would be cruel to throw away a blind man's cane but having a little fun with someone's GPS isn't going to harm anyone, right? After all, the poor sod whose artificial leg got rusted on in the rain because some prankster hid his umbrella wasn't to know was he?

 

Maybe the answer is to have the word "STROKER" stamped on one's head to warn the unsuspecting public!

[Guest pprovost]

Hey Bill,

I would be very flattered if anyone said I looked ok especially when I am walking or trying to put my winterboots on at the mall. Many people think I have MS. I have been so lucky to have an entourage who is constantly under foot to help me out. I am known to lose my temper when people try to help me with tasks that I am well able to handle myself. I remind myself that very few people have bad intentions but they do have fear, fear that I may fall, fear that they will do something wrong, fear that they could be like me some day, fear of being judged. I havew come to realize that there a lot of angels in the world and accepting help from a stranger is simply making a connection with another person who I used to resemble.

[bill]

Hello everyone,

I didn't have my computer online for quite a while and wasn't able to stop in to say hello.

I'm pleased to see this thread is still active.

It sounds like we have all encountered some ignorant people during our journeys. I guess it's part of the stroke experience that even the Drs. fail to address.

I know that there will always be ignorant and insensitive people in our society. I pray that we all be given the strength to deal with them.

[Guest cycad]

I had my stroke about a year ago and I've been out in public lately and am genuinely surprised at my own reflection. My self-image and my real image just don't match. But of course all people can see is this healthy-looking guy with a suntan. They can't see I'm hanging on by a thread and grimacing in pain. It's none of their business, anyway. I've told my friends that I need some cartoon stars circling around my head or something.

 

But not really. As my grandma used to say "when I was young, people told me I was good-looking, now they tell me I'm looking good!"

 

I'll take what I can get.

[TWoodbury]

I too have had some experience of people's ignorant attititudes dealing with stroke victims. Whether it be their "but you seem so normal" to the obvious "I'm only trying to help you" attitude. I deal with it the best way I can. I explain once and if they still don't get it, I ignore them. Sometimes it's frustrating to explain it over and over to each person you talk to though. The hardest part for me to deal with is the "everybody wants to help" stuff. I want, no..have to do things for myself and it makes me so angry when people feel as though they need to do EVERYTHING for you, then get upset when you tell them you want to do it yourself. I understand that (especially my family) they care about me but how can I make them see that treating me like I'm disabled just makes it worse on me? Sometimes I just go hide in my room for days on end because it upsets me so much.

Trish

[scrappier]

Other people don't concern me too much. They are just mostly shocked when they see me function and talk. (good kind of shocked) Even though my husband was with me through the whole thing, (even the nurses offered him a job! he was that good) its still HARD to communicate to him what I've been through and how I will be forever changed. Its like I'm suppose to forget about having a stroke and now its "mind over matter". That was not the case last summer, when my kids accidently set the bushes on fire( with a sparkler) and my son (12) had the wherewithall to run for the hose. I could not run then and only can do short spirts now! This was always a fear, that happened! And I did not think of something that simple like a hose! Hope I've gotten better than that. Now I feel like I'm back to getting on their cases with homework and reading. Need to try their school work, I admit dreading helping with that because I do not feel capable. Like last week, I realized I could not whistle, something so simple. Now I can to a song, as long as I don't concentrate on it, then I can't. But I laugh to myself, most times if I talk to someone in the grocery store, I don't think they have an idea of what I've been through. I still don't know how "different" my voice sound now? Being tired at night and voice are the two biggies to me

[karenlorraine]

I am glad that I found this website. I was beginning to feel that I was the only person that gets frustrated with friends & family. My husband had his stroke 2.5 years ago when our baby was ten weeks old. Family gathered around the hospital when he wasn't expected to live through the night. When he did manage to stay with us they all disappeared. The show was over as far as they were concerned. His family never visits and rarely phones; our friends never ask us to go out with them (they are afraid Ed will have food or drool hanging off his mouth during dinner). I know that people hate to see the way my husband has become but it has not been a picnic for me either. I have no choice but to watch my husband struggle day to day. I don't enjoy it either. I can't even get anyone to come and stay with my husband for a couple hours because everyone is afraid that he will have a seizure, choke, wet himself and god knows what else. I had a friend tell me that they would like to help but have no training to deal with a stroke patient. Guess what, neither did I; it was hands on and one day at a time. Doesn't take any training to sit down with an old friend and chat about the past, present or future. No training required to take him out for a walk in the chair. No training to show him that he is still loved. People need to realize that after a stroke even though there may be physical or psychological changes, the person that you loved is still there.

 

Thanks for listening.

Karen

 

I feel ten pounds lighter after getting that off my chest.

[Guest Debbi]

Even though my stroke was mild, it was still a stroke nonetheless. This is what I keep telling my husband. There are things about me that have changed forever and there isn't a thing I can do about them. I will learn to compensate, but things are never going to be the same. He acts like I should be 100% okay now at times. It drives me crazy sometimes. Don't get me wrong, he is right here with me and is wonderful most of the time. Just every now and then he gets this attitude. I know it must be really hard for him. Everyone was surprised that I never actually lost any real work time. Mostly, I must say that everyone has been very good with me.

[Guest hwstock]

He acts like I should be 100% okay now at times. It drives me crazy sometimes.

One of the most common questions I get (in different forms): "are you 100% now?" People seem incredulous when I say, "No, I will never be 100%." To the engineering-inclined, I add "I am 70.7%*(1 + i), where 'i' is the square root of negative one." In short: I can try to be of the same magnitude "good" as I was before, but no, I will never be the same. Probably, my tongue will always burn and my voice will slur when I talk too much; but people keep saying, "your speech is back to normal!" No it isn't, trust me. I spend a lot of effort to look and act normal, to outperform "normal" people. I make up for my lacks by striking out and developing some other ability -- i.e., I've learned to scan my sentences so rapidly, for hard-to-pronounce words, that people think I am always talking "in real time." I guess I'm a victim of my own success, and for the ability to carry off these deceits, I should be very thankful.

[garydotgray]

Hi HW

 

Nice Post.

 

If I understand the way recovery works.

 

Stroking causes brain cells to die. Unlike some other cells in the body these cells will never come back to life and/or be regenerated (they are dead.)

 

So the function that they preformed will never be able to be done by them again.

However the brain is a learner and can be taught to use other living (brain) cells to accomplish a measure of the function that has been lost.

 

This can take a very long time and requires the stroke survivor to show the brain what it is that it has to do. (ie hand arm or leg movement.) We do that by repeating the function (aided) untill the brain kicks in and says "oh ok I can do that by doing this" (eg. movement by using other connections and other cells.)

 

It may be able to get some things (but not everything) going again using this work around method (and it is just that a workaround method.) It could have any percentage of sucess, but it will never be 100 percent because it (the brain) will never be able to use the same connections and cells for they have died with the stroke.

 

This is a very simple version of recovery as I understand it.

 

If I am in error could you please help me to get a better understanding of how it works.

 

thanks

 

Gary

[scrappier]

great explanation. Like last night. I had one son with a poster due of the bird flu, since I don't know enough about the printer (or computers for that matter! I should aspire that as a goal, my husband is hoping I can do his business accounting for him) and my 5th grade daughter had 3 yes 3 in 5th grade (!) tests to be ready for today, much of it had to wait for DH to get home, mind you the man works 13-14 hr days, the joy of a family business! I don't feel like I was able to challenge the daughter at math like her dad who was busy printing out and composing the poster with the son. I feel I lack in this department and aspire to bettering myself at it if possible. Dreading next friday, my DH leaves with the boys for canada (snomobiling), and I dread knowing it's just me for a whole week with the kid's homework! I'll try my best but if its not good enough? who knows! Everone shares wonderful scenarios, thanks B)

[ctaylor]

You are so right Gary. it is and I could be wrong connecting and reestablishing connetions that is the key to recovery, merely because som of the road in our brains were washed out by the flood,(stroke) doesn't mean that we can't rebuild ort in some cases re map the roads. Yes the dames roads we once had may be gone forever but that isn't the end of the system. I know that I have had tobegin yto completetly rework my grid work of roads but I now believe I can and where the are no roads at all I may actually have to build abridge or make a detour available. The most important thing to rememeber is that it'd going to take time and lots of it and of course the patences required which is something I may be working on foe the rest of my life. but I don't have anything else yto do so I go about my road building. Keep up the good fight. Clark

[Guest Lin]

Great comments. Thanks to everyone. This discussion has really helped me to get some new vocabulary about what is happening to each of us in stroke rehabilitation.

[Leighla]

Yes, Bill, this is called invisible injury and it's a very

different catagory than visible disability. I share the

same problem. Also, I recently joined a support group for

brain injury, everyone present has this problem. We all

look quite normal some are working part-time with problems

of course. They all recommended that I go through the OVR

process. Where they help to determine if you can actually

do something out in the world. This step I fought for years.

Finally I realized that I couldn't really judge whether or not

I could be useful by myself. And, this has been my first step in

accepting responsibility for an event that just wasn't supposed

to happen. Charge on, I say knowing that you are not alone. Leighla

[Leighla]

Hi all, I just read all of this topic. I am a survivor with only invisible

injury. I think these cases are very different from the visible ones.

I haven't had any rudeness from people but I will say that folks

who have known me seem to get something of a look of terror when

they ask me were there any warning signs? And I say no. Then I tell

them an aneurysm is something you are born with. They look even

more shocked. To be honest, If I had even known about all this

pre-stroke. I would have been terrified as well. All my suffering

seems to come from my own fighting to accept the reality of my

situation. You wouldn't think the loss of career could be this

devastating. The worst problem I battle with is waking up without a

purpose except getting through the day. This is a very difficult road

we are all on I see here some very staunch spirits and warm hearts.

Peace to all. Leighla

[emmalibbie]

Hi! My name is Liz. I wanted to quit work, but not this way! I haven't worked for a year now! SS. says I can work a desk job! I wonder what kind of job I could get with such a small brain! I asked my old boss if he had a job for a person that had to sit and only had half a brain! He said I couldn't have his job! I miss the people! I miss going out! My first stoke I was sitting on the couch just finished polishing my nails! I got up to take a shower, and fell down! I couldn't move or talk! I was lucky! I got right to the hospital and got the meds right away! That was three years ago in last June! I am now up to twelve strokes! I do very well considering! This is a very hard road! Keep coming to this site! It keeps me going! Make your self a purpose every night! Do you have any hobbies? I am lucky! I crochet. I can still use my hands! I have made eight afghans since July! I have five children and nine grand children! I have one daughter living with me, but otherwise I have no help or support! We sell small things on E-bay! My husband put in Turo-lister! I go to that and put in the items to sell. Then when the list is long enough, he checks it and put it on line! I hope you have a beter day tomorrow! God Bless!

[2ndChance]

I feel very alone in my opinion here, but I use the ridiculous questions asked of me to educate others, I do not let them irritate me. And I always try to educate without embarrassing the other person, for example I might say:

 

You know, the brain damage caused by stroke is a strange thing. Because everyone's brain is different, everyone's symptoms are different. I was lucky to retain full cognitive ability but I lost the use of the left side of my body, and I think a lot slower and I tire easily.

 

2nd Chance

[jkirshenbaum]

I had my first stroke 2 years ago and today have some weakness on my left side and chronic pain. People who know me or know of my strokes are always telling me "You look wonderful," as though they expect me to look dried up and decrepit. I am 57; had stroke at 55. I tell them I'm fine and don't mention the pain. That ends the discussion. My close friends and family know the truth and are more understanding, thank God. And my husband, Gary, has been a saint. Addendum Yesterday I saw a friend for the first time in 4 years; he knows of my stroke. He did not say anything but hello when he saw me. I was hoping for: "You look wonderful." :wub:

[jrodriguez]

Hi all,

This is a great discussion. The "I can't even tell that you have" aphasia/a stroke, etc. is a compliment yet an annoyance too. Sure, I'm happy that all my work to regain some of my language skills is a compliment to me. However, people look on the surface. I can do "small talk" pretty well and I can converse intelligently if I am prepared and I practice. I know my limitations - and when those limits are reached (frequently) - I'm a stroke "victim" to the world at large. You know - the expression changes, etc. So that is annoying to me.

 

I'm OK with it - humor helps! Janice

[milepost17]

After reading the foregoing comments I feel extremely grateful that my friends and family have treated me with affection and concern but, knowing my great sense of independence, have dealt with my disability (left side paralysis)in a pretty casual manner. I am my own worst enemy in regard to appearing in public. I try too hard to act "normal"and have fallen once, breaking my wrist in the process.Vanity is a dangerous trait and it causes me to tense up when i am out and about making careful movement even more difficult. I guess I keep trying to pretend that it was someone else who had a stroke 3 years ago.not ME.i don't want to accept the fact that i will never again be able to knit or crochet as I had so loved doing for many years. Even tho I am 66 years old, I need to GROW UP ! Thanks for your attention.......................Lea Raye(milepost17)