others perceptions of a stroke victim


bill

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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.

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Hi Bill... Yes we can understand where you are coming from. People look at my husband of is the stroke survivor and say th same thing as you are getting.. His sister has even said to him that he is doing to get my attention( you know that faking thing again . I have been taken care of him for over 2 years now.. And Yes we both get angery.. Is there a support group where you live for stroke surviviors ??? Look in to it.. Call your local heart acc.. Then can help you out... Or find a good friend that has been with you the whole time that you have been ill,, talk to them... Until next time Take Care.. and may God Bless you .. Linda

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Hi Linda,

I live in a rural area in Northern Michigan and frankly, the support is quite limited around here. Most of my family has been quite supportive. My son attended CMU and is knowledgeable about sports medicine and nutrition. He has become my personal "trainer". Although I may never be quite the same as I was pre-stroke I'm not done for yet. I notice that my strength improves daily.

Your husband is fortunate to have a compassionate wife as a caregiver. It's a hard thing to deal with for a spouse. I just visited a woman who had a stroke 2 yrs before me. Her husband is gone and has filed for divorce. She feels crushed.

The whole family is a victim of a stroke. I personally felt as if I was a prisoner in my own body. It's a hard feeling to describe.

I feel that it's a real test of a relationship. It's easy to have a relationship when everything's going well. If you can both survive this rough time you will have accomplished something that will bring you closer than ever before.

Linda, just a thought. Most people will not understand what I mean, it's easy to be happy when you get an obvious blessing. Sometimes we are blessed in ways that are not apparent until long after we receive them. His ways are not always a simplistic solution.

Be Blessed

Bill

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when i went to the ER th Dr told my husband that i was faking it. My husband was livid he was ready to start yelling but another Dr came in and had to tell him everything over again and he was more better at listening and suggested on an MRI for the next day. it took 2 months to get a diagnosis that i had a stroke. that was 2 yrs ago . now everyone tells me that i can't do something because i have had the stroke.

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There are some doctors that have more experience than others. Each survivor may have different after affects of their stroke. Ive had three strokes, first one

in Feb 1997, next was in June 1997, and last stroke January 2002. The first stroke affected the brain (lost short term memory and cognitive reasonings), last stroke affected me physically. I have no complaints. My "life" has changed, but notice I said "Life". Im still alive. Make the most of what you can each and every day. Smell the flowers. Do something "good" for someone that can not do it for themselves. Im going back to a community college, and still helping people with their computer questions. Im still working on my webpages, providing I can list them here. Im new to this service, so Im learning the rules here.

 

Wayne "Maury" Christian

known as "Highway227"

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Hi,

My father is a stroke survivor and just about all of his friends have left him. Their excuses..I can't stand to see him this way...I don't know what to say to him.....I just can't beleive it happened to him. Yes, Daddy's stroke was massive. It left him with left side neglect, left side paralysis...some brain damage....but he still has his intelligence. Oh, he will say something that may be wacky...once in a great while...but if you talk about current events..or childhood memories..he can stay right with the conversation. He is treated as if he is a babbling idiot....I get so ticked! I do understand...it is hard to see someone who has changed...but you know..other than sitting in a wheel chair....or laying in bed...he looks no different. His droopy face is gone...he looks just like he is supposed to!

 

When I take him out shopping...or out to eat...I make sure he talks to people. He tells the waitress what he wants to eat..and how he likes his coffee. I get his money out ofr him..and he pays for his purchase. He may have had a massive stroke....but he still can participate in life! Right?

 

Vickie

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:P I had a stroke 10mos ago. I have just returned to work, and daily I hear how good I look etc. Ii try to understand that the others don't know how we feel. One of my doctors said it best when as I was trying to explain some nummness and I said "you know" he said "how would I know, I didn't have a stroke" Sounds cold, but very true ONLY WE KNOW

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Hi! I am happy to find this site! I have foound some from the UK. I have been having strokes for the last three years! I have had nine! I am 53! I ccan no longeer work or drive! Besides my strokes, I have a back problem that will put me in a wheelchair soon!1 I have five growwn children, but get little help! My husband works three jobs and helps me! It gets very hard somtimess for both of us! I am very lucky I can walk and talk! I may come out woth funny wwwwords, but I can talk! I told my husband one day to cut a hole in the wall to put the vaccume in!!! He couldn't figure that one out! I was talking about the air conditioner! My daughter finds crackers in the fridge and other funny things! I have to walk with a cane outside. My mind is the worst! I sure know about fogginess! Sometime I have trouble seeing! Thank God I am alive! Liz

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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.

<_< yes i hear this also most every time i step outside my home to go anywhere, it gets old really fast. they cannot see the effects that many of us do have that make life harder than it once was, only the outter appearance. it can be extremely frustrating, so many think strokes are only for older people and that they paralyze or kill. yet here i am 31 and walking and talking still ok. and i am determined disabled by my surgeons, and neurologist. my 1st neurologist told me i was faking or mental when at 21 i had my 1st stroke. if he only knew...he made me mistrust my own feelings, and doubt the last stroke was serious when it hit me, it took a caring neurologist to explain it all to me, and bring relief to my mind that i was right and should always listen to my body and inner gut feelings.

this is why i think more people should be aware of this and it hits anyone, STROKE is not always the same, and it does not have preferance to it's victims and survivors.

i am so glad this board was made, maybe it is good to vent and listen to one another, it shows we are not alone in this all. :)

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Oh Bill I just had to send a reply to this one. Although I AM NOT a stroke survivor, My Mum is and has been for 7 yrs now, and this is one of the things that really gets her going, when people ask " how are u today" she says "well Im just Dandy thanks for asking, my leg is crippling me, my back hurts like hell, and Im constipated", :angry: that soon shuts em up, she and I are sick to death of people saying " oh but you look so well, you'll feel better tomorrow <_< " Yeah and pigs might fly.

I can now tell without asking how Mum is feeling by the look in her eyes, her face maybe glowing, and she has a smile but her eyes tell it all. :( :ph34r:

and on really bad days, she looks really tired and pale......and if anyone were to dare say to her " well you look ok" Im sure ill or not she would get outa bed and flatten them. :ph34r:

I dont think anyone has any idea how a stroke survivor feels, and I wish sometimes that they could be in her shoes, even for just a few mins, it might change their out look on stroke.........might even get some of them to think seriously about the chances of their own selves having a stroke.

Regards

Anne in NZ

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Good Morning,, I have taken the time to read everybody's reply. And we all are right.. I am not the stroke surivior that would be my husband.. But I do take care of him 24/7.. And You all are right. We sure do get sick and tired of people saying You look good today or how are you doing.. I am to the point I say doing good for right now ask again in 5 minutes,due to things can change at any moment.. Some people understand but most people do not.. May be they just do not know what to say.. My husband has Lots of TIA's. That to is a pain. Due to the symptoms do not last long.I have taken him to the hospital a few times they do not due to much to help him out.They just say another TIA. I want to say No kiding and a couple of other words too back at them. So just take him home and watch him.. What do they think i do all day?? Oh thats right I just sit on my butt and do nothing..Sorry for complaining. I guess I needed to get a few things off my chest.. Thank you for listening.. Take Care and May God Bless you Day...... Linda

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Good evening to everyone. I've just read all the posts, many situations sound

familiar, while others are quite different. One common bond we all seem to share is either our own personal experience of a stroke or having had it happen to someone very close. It has been a life changing experience for me as I am sure it has been for you.I can relate to many of the comments I've read. Although I am very blessed, I have limited use of my left hand and arm. I can now walk without the use of my cane but with a noticeable limp. I have also experienced people who knew me before my stroke, to either act oblivious to the fact I can no longer do some of the things I once could or they may seem to think that now I don't understand english. I suppose it is hard for them to know exactly how to act.

I thank the Lord daily for my wife, who was and continues to be the best caregiver a guy could have. Sometimes we get so wrapped up in our own trials and problems I think we may forget about the hard work, feelings and sacrifice that our most important companion may be dealing with.

 

Good-bye for now and THANKS TO ALL THE CAREGIVERS !!!!!!!

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Bill,

I couldn't agree w/you more! The problem is that the public's ignorance is due to the reason there is no education about what a brain injury is! The only health issues the public is exposed to is heart disease & acid reflux! Both The Stroke Assoc. & The Brain Injury Assoc. have fallen down on the job. Because I think they're clueless as well to how a brain injury affects a person's abilities & emotional behavior. Neither know anything about the functions of the brain. We need to see commercials about how a stroke affects younger people as well as the elderly & it's not always related to health issues! Mine was from medication! We need to explain how surviving a stroke stops a person dead in their tracks. Their careers are usually over. Instead of glossing over the details. The facts & truth must be given to the public & the medical profession. I can't tell you how most nurses I've met are clueless to the fact WHAT a stroke is!

Until these organizations step up to the plate & start educating the public we're doomed to deal w/an ignorant society. I know it can be done. Look at all The American Heart Assoc. has done w/making the public aware of heart disease, which is nothing compared to brain injury! It's the brain that cause all of our organs to function properly once that's compromised the person surviving the injury is forced to compensate to make their bodies & emotions work as it did prior to the injury. I'm learning so much about the brain from a cognitive re-training program I'm in, in Calif. They're the only professionals I've come accross since my stroke who actually get brain injury & understand how to help you recover to "re-path" the brain & teach you compensation strategies. Unfortunately, it's the only one in the US! Isn't that a crime? Since brain injury is the #1 reason for disability in America!

G.

Gloria

YL , Calif.

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hi. this is bruce, a stroke surviver. read the posts above. what do you say to a stroke person? eventhough i understand what a stroke is or feels(to me) what should i say to another? i heard i lot of that not to say--but what is correct?

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Guest hostsmurf

Hi, everyone. ive stroked in January of this year. I met lot of stroke victims at our stroke association in Canada. They all say the same thing, if you don't have an appearance of stroke they get the second degree about being really sick. First of all most of the general public seem to equate a heart attack being same as a stroke. It real education process to educate people on the difference. Family and friends seem more understanding but sometime also sometime ready to give the second degree. You have to realize the caregivers and loveones are struggling just as use to come to terms of what we have and how to cope. I believe every time some questions you on your handicap and doen't believe that u are truly sick its a great opportunity to educate and in a way vent in a postive way. To get *beep* at fellow workers or others just drives a wedge between you and them and there eyes and eyes will close to reason. thank you for taking time time to read and email me if you like.

 

" people get angry if you tell a lie"

" people get livid if you tell the truth" author unknown

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Hi Bruce,

You made a very valid comment about what is the right thing to say to a stroke survivor. A quick smile and hello are good starters. Everyone likes to be greeted in a friendly manner. Of course, it would be nice to know what kind of effects the stroke had on the person...whether they can walk, talk, see or hear. Is there brain damage and are the cognitive skill intact?

 

My father is our stroke survivor. And I can speak on what works for him.

He does have some brain damage.and loss of vison on the left side of each eye....and at times he will say something that is not really true..but in his mind it is. He knows his mind isn't what it used to be....he will tell you straight up about his disabilities. He is not ashamed..sometimes embarassed but not ashamed.

 

For example, he will tell you he has broken his arm and shoulder 14 times. The truth is...he did break his shoulder..one time.... in a fall when he thought he could get up and get a drink of water. He had forgotten that he is paralyzed on the left side and can't walk without a lot of assistance.

 

But his intelligence did not suffer from any after effects. He can count, spell and carry on a normal conversation with a few inaccurate comments that can be easily ignored.

 

I tell his friends, to talk about the past...his long term memory is pretty good. Talk to him about what kind of medial care he has had...he may mix up the doctors, but he is able to tell you most things. Or ask him about what kind of work he did.

 

We joke about his Cadillac...his wheelchair. He tells us he is going to put dual exhaust on it. Silly things that make him and us smile.

 

Daddy has friends that have never come to see him in the 3 years that he has had his stroke. They will come to me and tell me that just can't stand to see him "that" way. And I say what way..that he is in a wheelchair and that his left arm is somewhat limp??? He still looks like he did ....has the same voice...still likes to laugh..he loves to have people visit him...so what is with "that"???

 

I am sure you will get more posts on this subject...and they will be full of great ideas.

 

Vickie

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Guest hwstock
Daddy has friends that have never come to see him in the 3 years that he has had his stroke. They will come to me and tell me that just can't stand to see him "that" way. And I say what way..that he is in a wheelchair and that his left arm is somewhat limp??? He still looks like he did ....has the same voice...still likes to laugh..he loves to have people visit him...so what is with "that"???

I think a lot of the hesitancy, with old friends, is simply this: people hate to be confronted with reminders of their own mortality.

 

I've met many people who are deathly afraid of stroke, and they were quite shaken up by mine. One of my coworkers immediately began an exercise regimen, citing my stroke as a reason, despite the fact that I was in excellent shape at the time of my stroke.

 

Most of my deficits are so well hidden that most people have no idea about the stroke, until I tell them; then they are totally nonplussed. But It took me some time to get past the point where cashiers seemed to think I was mentally retarded.

 

I've gotten one consistent negative reaction from those who knew about my stroke when it occurred: there is a strong tendency, particularly among people who are overweight or who smoke tobacco, to smirk and tell me they haven't had a stroke, and look at them, hence all the my exercise was in vain [before my stroke, these were the same people who would fantastically overestimate the time I spent in exercise]. I don't know what to say, except to explain that my stroke was outside of normal risk factors; and my health (at the time of my stroke) was viewed, by my doctors, as a huge benefit for my survival.

 

The other negative reaction I often get is from people who don't know about the stroke, or have forgotten. I am often asked to do some quick manipulations, or to write quickly; then the same person will talk to me as I am working, expecting an immediate answer to some question. Because my tongue and voicebox are partly paralyzed, I still rehearse each sentence in my head before I open my mouth, to make sure the words will sound OK -- e.g. I substitute different words when I know I would have trouble saying the originals. I do this so fast, that I give the appearence of speaking "in real time." The problem is, that rehearsal takes a lot of my brain, and I really can't multi-task like I did before. I can pay much better attention to the task at hand when I am not trying to compose sentences to answer a frivolous question.

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hi. this is bruce, a stroke surviver.  read the posts above. what do you say to a stroke person?  eventhough i understand what a stroke is or feels(to me) what should i say to another?  i heard i lot of that not to say--but what is correct?

hi Bruce, what bothers me the most is when others are rude and judgemental about it all,and base their comments on what is seen, not bothering to even ask. i don't think it is what is said, but how it is said,... that makes it so bad.

you can show genuine caring and concern in a statement, and also make it sound so cruel.

if someone took the time to approach me and ask what happened to me polietly i would be more inclined to explain it all.

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I was amazed when I first had my stroke at the reactions of people. Some people, who I thought were good friends, have never been in contact since the stroke. Other people, who I had lost contact with for a number of years, heard about the stroke and wrote, phoned, and came to see me.

 

I think a lot of people just do not know how to deal with stroke (or probably any diability) and so they just ignore it. And therefore the stroke survivor is ignored. It is really too bad. Most people will at some time in their life have to deal with diability. One statistic I heard is that 25% of people will either themselves, or someone in their family, not be able to climb a set of stairs.

 

I have been troubled by some people in my own family as well. My niece, for example, relates to me totally differently. It's like she doesn't want to admit I have a problem. Her daughter (who is 4) on the other hand relates to me just as she does everyone else. She also asks very good questions.

 

When I was still in a wheelchair I often had the experience of someone talking to whoever was pushing the wheelchair and ignoring I was present -- asking questions about me. Fortunately often the person driving would say "Ask her."

 

I also have the experience of people relating to me as though I am mentally retarded. I figure it is their problem.

 

A lot of education needs to be done.

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Guest kathyinhouston

Excellent discussion, wonderful to know that we're not alone in what we're experiencing from the rest of the world. The world has become cold hearted, no capacity for compassion any more it seems. When my friend John got home from the hospital some of his family came by to see what shape he was in. They said to us that he looks great sitting there in his chair....they stopped just short of saying "so what's the problem"? They didn't realize that at that point he was propped up in the chair. His parents planned a "fishing trip" to a neighbors pond when he went to visit them..forgetting that he is paralized on the right side.

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Greetings,

I have, among other things, RT side facial paralysis; consequently I tend to get stared at a lot. My balance is shot also. Most people, I've found, that because of my age, (43 now, 36 when I had the stroke) I must've had a car accident or something. Kids tend to stare and they usually ask me what happened, which I don't mind at all. Looking this way has given me a new appreciation and insight to the disabled way of life. I remember when I came home from rehab, I was in a wheelchair. That added to the facial paralysis certainly made me really vulnerable to insensitivity; I would find myself telling people that I had had a stroke and that was why I looked like I did.

I can't imagine what it must be like for those who've had the misfortune of having had a stroke, only to "look normal." Sometime's I think it might be easier for me.

Take care,

Susan

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never been accused of faking my stroke, mostly because i dont say much about it anyway. I never tell anyone i have a visual problem, i never feel its nessacary. In fact, although im a shy guy thx to the stroke, i very, very rarely even tell people i have aphasia. As physically i look fine, my head scar cannot been seen, i guess very rarely to people ever know what my stroke history at all. Thats probably a bad thing? Probably......

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Hi,

 

When people ask me "How are you?" and I suspect they are not sincere or are skeptical of my condition. I sometimes tell them: "I'm in pretty good condtion for the condition my condition is in."

 

Dennis

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As to people treating us differently:

 

All of my family want to boss me around, telling me what I can and can not do. Even my 6 year old granddaughter. As though they will pay the bigger price if I fall or something. I have not had a serrios fall in 6 months.

 

Dennis

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Yes I have had similar experiences, however because there was little physical evidence that i had suffered a stroke Most people would say you had a stroke! But you look so normal. Little did they rrealize the most of my problems were psychological in nature and that eveytime some told me I almost looked normal I would slide further and further into deep depression, I am truly thankful that the physical problem created by my stroke were minor but every stroke survivor is different his or her problem are different and for anyone to make the mistake of under estimating the damage on all levels does that indivdual a great dis-sevice.

I remember a quote that beauty is in the eye of the beholder maybe the same could be said for the pain endured by stroke suvivors.

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