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SassyBetsy

They say But you talk fine

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I lose my train of thought, fumble around for words, make a funny sound when saying f words, and I swear I talk super slow.

 

ok so maybe I talked too fast before, but I said yes speech group helps. Just sharing our stories helps, and chatting too.

 

Just because I can talk, do not think my speech is what it used to be. But nothing is changing.

But after they interrupt me,finish my sentence wrong,or twist my idea,and I get upset saying wait for me to say this right. I had a stroke. They say,no, you are fine. 

 

But how to fix these things.

step one.be calm

step two.be calm

step three.be calm.

 

once flustered, I bumblejumble my name and address. Or I smile nodding wthillbilliegoat, what does it matter let them think for me and so they go away feeling like a genius when they were stooooopedos hitting the wrong target.

 

oh, those best ones are on the phone. they transfer me. I tell the script more times than an FBI fugitive, often really reading what i need to say.

..but people cut me off. transfer me.

 

oh and those conference calls. they say please hold while i call that office to verify discuss report and speak when they come on the line. ok once,they were not doing what I needed and I was shouting listen to me,can you hear me,this is not helpful,you are messing things up, can you just stop and listen.  and that was me being creative because my mama washed my mouth for shut ups and that is 4 letter word to me.SHUP. Anyway,the nursing staff came running to see if i was ok,what is ruckus going on. As I recall, I hung up just speechless in my state of mind. 

 

Gotta love it when they ignore me,like I speak martian. Especially when I say No. And the just keep asking. maybe a tad differently than first time maybe exactly the same. No. No. Can you hear me? Please listen to what I said. Can you respect me as a person who made her choice. No.

Mama said No Means No Every Time. I loved that and use that on all kids,no matter their age.

 

So they think my stroke ruined my mind, but then they expect me to be brilliant. Make up your mind.

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Pam I love the way you tell your "things". :wink: I can very much relate the moments and feel your frustrations and then to me it comes through with this humorous sarcasm that I love from you. Please don't take what I say as a negative because it is a compliment. I have felt heartache, frustration, anger, hope, relief, and a multitude of other things in your posts. Sometimes I feel like ®[]»]]%° to all of those fools who think they know you and can speak for you. God bless your strength and perseverance.

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Pam, I have  dysarthria from my stroke,and while I can't explain it as well as you, I've  had many of the same experiences as you. Usually, if people would just take the time to listen to me talk, and try to understand what I'm saying, they would understand what the odd-sounding words are. My friends and family understand me, because they have tried to understand me. And, if they don't, they have found that I don't mind at all if they ask me to repeat what I just said. But, the problem is that a lot of people won't, or can't, take the time to try and understand you.  What I've found that helps sometimes is to explain my problem to them briefly, then ask them if they would mind communicating via email because I can write better than I talk. If they agree to this, they soon discover that I'm not as dumb as they think I am.Best, Becky

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I practice my speaking as much as I can but avoid the phone if possible. Most adults understand me but I have some problem with youngsters. I do agree though that I'd rather resort to texting than talking over the phone especially if I have something tricky to talk about.

Deigh

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I'm smiling, I do the same thing Becky. Sometimes I tell a person right up front that I had a stroke and at times I stutter and can't get out what I'm trying to say so bear with me. To my happy surprise 99% of people are very positive and understanding. Now that does not necessarily take my frustration away if I do have trouble but the other person is typically very patient. Unlike you and Deigh I can talk to people on the phone but I am very well known to start out with the same explanation and get the usual positive response. I realize it would be awesome if my speech mimicked my written words...LOL I'm pretty good at writing my thoughts isn't it weird how that works. I totally get why email makes a lot of sense Becky. My daughter is sorta unsure how she feels about my forthcoming when I first speak to people. She has asked me why I do that...suppose I am just trying to reduce the frustration I may encounter. Call it using the stroke card lol. Smiles, I can very much relate to all of you. Don't take my smiles and laughs in a negative light, I get the same frustrations...I suppose it has become my way of dealing with it especially when I am not getting through to someone. It can be upsetting but I can also laugh about my own experiences like a sort of inside joke I guess with myself.

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It's almost been thirty years.  Some days are better then others.  Try to keep a positive attitude, and it will be okay.

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I had to call the credit card company this morning, I got a fast talker. I had to ask her to stop and speak slower as I have a brain injury and I can't understand when they talk fast. She was nice apologized and slowed down, that is why I hate the phone,I get confused easily. When they did my recent speech therapy sessions they documented me as having a rich vocabulary but slow and thoughtful when I speak. I guess that's good.

 

Has anyone else noticed a difference in how people react when you say you had a stroke vs. I had a brain injury. They don't seem quite so dismissive with the second vs. the first.

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I see that too Scott, people seem to be more aware of brain injury and it's consequences, the fact that a stroke is just one form of brain injury isn't obvious to most people.  I think it's part of the culture that says Brain injury is not your fault, but a stroke is.  Also brain injury is something that happens to young people while stroke is not.  All incorrect of course, but is an impression that people have.

 

There's an anti smoking ad on tv here at the moment that makes me cross.  I know they are deliberately showing worst case result of stroke, but ...

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This reminds me of about three days ago when a debt collector called. :pounding-headache:

Medical bills of course and actually the hospital where all my doctors are affiliated has me on a Patient financial assistance program. But it seems that it had run out and I needed to reapply. Anyways, the lady called and was rude from the beginning and was talking so fast. She caught me off guard and I don't do so well with that. I sorta got to stuttering as I tried to explain that I was on the patient assistance program. She kept interrupting me and I couldn't get out what I was trying to say. I finally got out that I had a stroke previously and could she slow down and let me talk. Well she just said she didn't care that I had a stroke I was still responsible for paying the bill and what would my payment be cash, check, card. Then she proceeded to grill me about how I was supporting myself for 3 years unemployed and why I had been seeking disability for so long. I tol her that my mom pays for my medicine and I live with my dad and I buy my food with food stamps. She said....why don't you get in touch with your mom and see when she can pay it. Ok I had had enough...mean Tracy kicked in. I told her very bluntly that my mother was not responsible for my medical bills and that they could do whatever they had to do to get it from me. I told them I was not setting up a payment plan with them as I am unemployed and that I have 0 cash, no checking osaving account, and no credit cards. I told her I would not discuss it further and hung up the phone. So when I get really #^*£<% I can get out what I need to say better just not as nice. Lol. Witch.

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They do say that swearing uses a different part of the brain than normal speech. I think some people deserve to be exposed to that side of your brain. :grrrrr:

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 Well thatS A Hoot!!!!🤣Good for you Tracy. You did the right thing.:rofl:

No one needs an explanation. Tracy all you said is true but it is your business not anyone who you owe money to or otherwise. privacy is a right and a law. privacy.

Stroke is a natural catastrophe a personal tragedy yet there is little pity and the claims it is preventable do not help. My doc tells me my organs look like some one who has had high blood pressure for 30 years. hereditary too. I agree better health care is needed and they better be careful with me now. 

 

I have not said brain damage...sounds exotic...i will try it.

 

so next time I will just explain oops my brain just slipped to the other side and it is true!

 

Yes I agree chubby some days are better.gotta hang on that. 30 years wow :bravo:

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PAM.... your words are gospel!!!! 

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Thank you ladies for the understanding support. Heather I agree....if someone wants to go there with me then stand back I'm coming. I have at times felt guilty but I am patient...I can stay calm usually when I know someone is in the dark about my certain difficulties and when I get a chance I will let them know and what would help like talking slower and being patient with me when I give answers. But I do have a limit. I sometimes feel that I can't keep up or am talked over because I have trouble getting words out. I have been known to bring out a lion (like Pam has said become big) when I am pushed into this corner. At this point all niceties disappear :grrrrr: and I can be down right loud, mean, and mouthy. I don't feel the guilt anymore, I have decided in almost 99% occasions you reap what you sew. :#@</!!: Thankfully I still retain sweet reasonable self once I calm down.:smile:

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Yeah spelling sometimes it sucks. This is my way of saying I spelled wrong but am too lazy to fix it even though this probably took longer. LOL

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Good for you, Pam.  Lots and lots of applause from this end.

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You go, Tracy!

I have to say, I reckon people who work in jobs like that, dealing with unwell people, need to pass a test for how well they deal with said people!

Can make all the difference to someone's day.

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They say the worked in x field for x years......and that makes them good...or just x years of bad treatment.

 

The inservice training lacks.....

They work for years with stroke survivors but are clueless about nearly everthing.

 

You cannot teach compassion.

Providers are hard to find so easy to keep  caregivers willing to show up for work.

That is why I praise the helpful loving ones.

 

ok schedulers and receptionists......what is that deal???? I swear they get more sarcastic and rude by the mile. I try and smile while I talk so they not hear my distress but it not matter.

 

Face it everyone is on facebook...or wishing they were...all they do is get on cell phones.....ugh.

 

So I color while making appts, i never answer..let it go to voicemail so I listen slowly not caught off guard.

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Smart advice...I tend to let phone calls from numbers that are not in my contacts go to voicemail. Being caught off guard really affects my being able to communicate my thoughts. 

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I had to talk to someone at the bank the other day, wish I’d let it go to voicemail.

 

I couldn’t word...she kept sighing and trying to guess what I was going to say.

 

Worst. Phone call. Ever.

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Back when I was in my late 20's, I worked for two different temp agencies (kept me so busy that I could actually turn down some of the jobs they offered).  One of my jobs was two weeks full time data entry at a collection agency that was switching all their accounts into a new computer system.  This meant that every day I sat in a huge room, typing away, while all around me were bill collectors calling people about their delinquent accounts.  I couldn't believe how rude they were!  And when they were between phone calls, they'd laugh with their coworkers and make fun of the people they were calling (like what reasons people gave for not being able to pay their bills).  I couldn't wait to get out of there.  Near the end of the two weeks, the boss offered me a full-time permanent data entry position.  I managed to be polite when I told him no, thank you.  Augh!  I understand they need to be firm when they call people, but that's not the same as being cruel or rude - not even close!

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I have gone weeks, if not months, between talking to friends or family for talking on phone is my worst nightmare. I read the faces of those I talk to and they can also see when I'm struggling. Thankfully they understand.. Having Aphasia and hearing issues ( mainly tones) as well as been a life long stutter , phone and public is terrifying. I can free talk  but when you ask me a detailed question in need of a detailed answer.. forgettabouitit ( throw-back to HostWill xx)  It's like my brain just shuts down 

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I used to speak in public, sometimes not easy, sometimes very easy. Now I do not talk fine,I am slow on my feet. I lost my train of thought mid sentence,or I retell a story in 5 minutes.

 

I hate it when people try and rush me by guessing what I might be saying. I have said Do you want to try and guess again? or I have honestly been so distracted that I said oh boy, now that confused me so I need to start over. It annoys me that they do not listen properly.

 

I get shy to speak in group now,afraid I cannot say what i mean. for the doc, o make a list of things. 

I interupt people.. I try wait,then jump in ,it cut someone off. oh well I jumpeç.

better this way.

 

 But I find it challenging to not stand up for myself and often I am insistent?

Do I sound rude ??? I need to tell them. End of story.

How else can I be in real world.

 

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oh when I ask for help they say,oh you make your appts so you handle it.

 

it is exhausting.

😅

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I don't feel you are rude Pam. I know others may think that because I'm sorta the same way. I have had to change the way I feel about others disapproval of some things. I don't give a hoot. 😳 Now that may be rude but man it saves my self worth and helps me have a voice when others think I don't. I'm uncomfortable speaking in a group too, my only experience since the stroke is support group. Thankfully, they are all so patient and listen. I really like going. I have on occasions not in my group, made it known that I have a mouth with something t😰o say. Sorry emoji issue. I'm afraid to say it has not always come out calm. I too get frustrated when I'm on a thought and I'm trying like he'll to get it out and someone tries to finish my thought or disrupts my focus on said thought. 😓 I have been pretty vocal after. That said, I can't help but feel I have to make my point for fear of losing it forever in the lost thought realm. I conditioned myself not to be too hard on myself because of it. That's my 2 cents. 🙂

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Good for you Tracy.

 

I think for own own sanity we need to be ‘rude’.

 

Being nice all the time just doesn’t cut it.

 

Pam...handle it yourself??? Really?  And you are the one that feels rude?

 

We live in a mixed up world.

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