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PaulNash

Advice need on how to hold a conversation

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Janelle...I read your post and thought there you go there's one of my reality posts. I am so much better at someone else's reality than my own. Heck i had a panic attack 2 days ago over a piece of mail...is too bad i dont give myself good reality advice lol.

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I got you, Tracy!

 

Sometimes I read over things I’ve said a day or two later and wonder why I don’t take my own advice! 

 

I hate, with a passion, opening mail.  Sometimes we are anxious to open mail to find answers, it must be terrible for you.

 

My daughter Carrah suffers panic attacks. They are very real, however unwelcome they are, they surprise us at the wrong moments.

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Mine too...i understand how your daughter me I st feels sometimes. The letterp was from Medicare and all i saw were large dollar amounts. I have a real fear since winning my disability case that im going to receive a letter that says oops we made a mistake...give it all back. (Its happened to someone before...well social security retirement. They sent her a letter that said she owes them 60,000. 😳). After making it to the front room and trying to catch my breath while thumbing through like 20 pages my stepmom said oh its ok its just your Medicare statement they send each month where they have paid. Well too late lol the tears rolled out, the stuttering began and Janice said she had to go in the other room. Ha it was 45 minutes until calm. I am happy i can laugh at my moments...it helps keep the fear down of having more which just makes you have more anxiety. Tell your daughter shes not alone.

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Hi Janelle

 

Thanks for the sage words.  I have started to come to much the same conclusion, and I think that that acceptance it is helping.  I'm looking long and hard and coldly at who I now am, what I can do, and I am grieving the person that is lost.  So be it.  And, of course, these things take time.  My 3-year anniversary was a few months back, which has hit us both.

 

I've found that it's easier for me to talk to Linda when I am honest with myself.  I still feel like crap much of the time, but I allow myself to.  I'm still bad at being a husband, partner, soul-mate, friend, whatever, but I am starting to be less guilty and defensive, which improves how I relate to her, and she is starting to respond to that.

 

I have never been good at accepting things as they are.  It's what made me a great engineer -- I would always find a way to improve things, fix things, create something better.  Which has shaped how I have been trying to deal with the effects of the stroke.  Now that I am starting to accept the new me, I am also starting to feel less depressed (but still down there a lot of the time), be more open, and generally a better person.  It's not that easy, but it does take a load off, and lets me start to look outwards rather than inward.

 

I just hope that I can sustain this path.  I am planning to do whatever I can to sustain it.

 

I've also just read an interesting book that has helped with this path:  Mark Manson's "Subtle Art of Not Giving a *beep*".  He takes a while to get to his ultimate message, which is to focus on listening to, and accepting, the people who are important to you, and making sure that you are important to yourself.  He bases this on his own life experiences and discovering Stoic philosophy (which does not mean "just suck it up").  A lot of the book rambles through his life history and all the things that went wrong; the meat at the end was really worthwhile, though, and has given me new hope and a shift in direction.  I need to re-read and keep re-reading.

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Hi Tracy, I can relate to your reaction to the Medicare letter.  I keep waiting for the next disaster to strike, and stress out every time I get a bank statement or any sort of contact from my disability insurance.

 

I guess it is natural -- once one life-changing disaster has hit you out of the blue, you know that it can happen, and worry about whether and when it will happen again.

 

No magic wand, but I understand and I feel for you.

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Oh Tracy, I am sorry. Your step mum didn't understand the impact of the letter. That wouldn't have helped. 

 

Kudos, Paul. Acceptance of yourself may happen in stages, I think it did for me, but you sound much more in control.  That's fantastic. 

 

I'm so pleased you created this thread and didn't try going it alone. 

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Thankfully, I have video therapy now Janelle. I can also text her at any time in between appointments. I like it a lot! 

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Excellent Tracy.

She's obviously got client's best interests at heart. 

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Hi, In regard to keeping a conversation going, there are a few things I learned as a speech pathologist - thankfully my hemorrhagic stroke didn't leave me with many speech problems. First of all for those of you who mentioned they wanted to go to a speech pathologist - do so! They have a lot of tools to use.

One of things to do is ask your friends to do some turn-taking making sure you get your turn. As one of you mentioned think about what you want to add to the conversation. You don't have a lot of time but with taking turns it gives you more of a chance.  Ask questions especially if there are just two of you talking. Remember people like to talk about themselves. Talk about how you are feeling or ask someone how they are feeling.

There are also great websites to help you with maintaining a conversations for you to use.

Take care and keep on talking.

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Things are improving, but this was mostly about a specific issue between me and my wife.  We used to talk a lot.  About everything.  And our conversations would go all over the place, and be pretty interesting and entertaining.

 

Since my stroke they've been pretty much one-sided, where Linda will tell me stuff and I'll say "oh" or "interesting" or something like that.  I find it hard to respond adequately, or to find a new topic, and when I do manage either of these there has been a l_o_n_g pause that rather breaks the mood.  By then Linda is *beep*, I'm pulling back inside my head, and we go our separate ways.

 

We're trying to ease things up a bit.  She's trying to give me more time, I'm trying to respond as fast as I can, she's trying to ignore the faux pas.  Things are improving, albeit slowly, and I'm easing up a but more and becoming a tad more spontaneous as this happens.  Of course one of the big problems is that most of this sort of conversation happens in the evenings, when I am tired and my brain is shutting down.

 

But we are getting there, slowly.  Two steps forward, one step back.  Then lather, rinse, repeat.

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nice to hear that things are improving.  this is the thing with all stroke recovery 

2 hours ago, PaulNash said:

Two steps forward, one step back.  Then lather, rinse, repeat.

So frustrating for all involved.

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Paul there are also things you can do to improve response time. I know what you are saying. Actually I have gotten very good speaking "at" people but the moment they ask me a question... Silence or stuttering. Neither are fun and sorta kills the moment. Have you guys tried communicating in other ways before? Like writing notes to each other. It gives you plenty of time to give a well thought out response and just like before it can go all sorts of directions! It is not the same but a good thing to try instead of the regular. It could be quite fun actually...maybe get a few empty notebooks or journals and pass back and forth throughout the week. You guys can find a whole new way of enjoying each other and you can keep filled up journals and replace with empty ones. It would be a great thing to pick up and read one day. 😊

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My kids try and find words for me. They know me well, because 9/10 They get the right word.

 

Sometimes not, which is when I get frustrated that they've tried.

 

Must be very difficult for them.

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Tracy, that's a wonderful idea!  I really like it.  It also means that we can have "offline" conversations; leave note for each other about how we feel about them, and so on.  I will start it, and see how it goes.

 

        paul

 

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Yayyyy!!! Paul I love when I think of something someone enjoys. Let us know how it goes. Just a little quiet note... You guys can talk about ANYTHING you want to. Omg lol if I had a better half I would try this myself! 

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Janelle, same here. It is a wavy path to take... Sometimes I am thrilled and relieved that my daughter or family member thinks of the word and then at other times it is so off and then I think it frustrates me trying to get my focus back on what I am trying to say. 😋 It can make for some moments. I bet it is difficult for them... Trying to get thr right word and trying not to get the wrong word! Haha call me difficult. 

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You know it Tracy.

I get cross when they jump in too soon,  cross when they leave me hanging...

 

Paul, it's a great idea of Tracy's. 

 

Please let us know how it goes.

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Nothing yet, as things have been hectic.  However, Linda is dying to South Africa tonight to visit family for two weeks, and we'll be communicating by email more than anything (time zones, schedules, cost of international phone calls), which gives us a perfect start.  So your idea came at just the right time.

 

My hope is that it'll give us a new way of talking (email/text/notes) *and* if we are very lucky, that it'll break the logjam.

 

I've also started on a CBT course run at Sunnybrook Hospital.  5 of the participants (including me) have had a brain injury, 4 concussions, 1 stroke.  One was a fairly frail old lady who was really upset because she just couldn't seem to get things done around the house.   I spoke to her as we were leaving, turned out that her doctor had dismissed her concussion as "it's nothing serious, just a concussion", and told her to rest for a few days.  No MRI or serious neuro exam.

 

I told her that a concussion is a brain injury, that she needs to demand a referral to a neurologist, and that she should find a new family doc.  Don't know whether she'll talk to her doc, but she was SO relieved when I told her that she wasn't just malingering; that she had a genuine bona-fide brain injury and that she must give herself time and space, and tell her husband to give her time and space.

 

It makes me really angry when brain injuries are dismissed like that.  "But you look fine".  Several of my friends had the same sort of reaction after my stroke:  "thank goodness it wasn't serious".  Meaning that I can walk unaided (provided I'm not tired), can see well enough to drive (albeing with a vision waiver on my license).  The lack of memory, well that's not visible so it doesn't really count.  Plus there's the standard "I also forget things" response -- the is forgetting and not being able to form memories.

 

Sigh

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I get you Paul, about the comparison thing.

 

My new one is incontinence. Funny thing...no one has said "Oh yeah, me too!"

 

Try that one, see what happens!!

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7 hours ago, PaulNash said:

 

 

It makes me really angry when brain injuries are dismissed like that.  "But you look fine".  Several of my friends had the same sort of reaction after my stroke:  "thank goodness it wasn't serious".  Meaning that I can walk unaided (provided I'm not tired), can see well enough to drive (albeing with a vision waiver on my license).  The lack of memory, well that's not visible so it doesn't really count.  Plus there's the standard "I also forget things" response -- the is forgetting and not being able to form memories.

 

Sigh

I feel the same way or people try to find a similar situation to better try to show they understand.

i know they are trying to but when they do,  now, I just smile and think ok, you just want to one up me or you’re a butthead. Lol

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11 hours ago, PaulNash said:

 

It makes me really angry when brain injuries are dismissed like that.  "But you look fine".  Several of my friends had the same sort of reaction after my stroke:  "thank goodness it wasn't serious".  

 

Sigh

 

 It is staggering how we all get upset by the words 'You look fine', especially since it is usually meant to be encouraging! We take it to mean that we are 'playing the stroke card'

Deigh

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I know that people are trying to be encouraging, and that it is all well-meant.  I just cannot prevent the internal knee-jerk reaction.  And yes, it rather invalidates what we go through.

 

On a different but related tack:

 

I had a discussion last week with a woman who had a major concussion six months back.  She thinks that she is slacking off because the house is a mess, and she doesn't have dinner ready on time any more (she's in her 70's and very old-fashioned).  I explained to her that it's not "just a concussion", it is a traumatic brain injury, and that it is not at all surprising that she cannot keep up, that she forgets things and that she is always tired.  I suggested that she have a long talk with her neurologist, or that she considers finding a new neurologist.

 

Met her again this week looking *much* more composed, after a long consult with the neurologist, who finally explained to her and her husband when the impact of a concussion can be, and why she feels the way that she does.  She doesn't get any more done in the day, but neither she nor her husband thinks badly about about.  He has apparently even started to help.

 

 

 

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Honestly I just wish people or friends would treat me like they used to, some do but most are trying to make you feel better about yourself, that your are getting better............. no i'm not and in the long run they look stupid. 

Personally they don't know anything about my day to day life, if I could just to do things that I took for granted I would give away everything but this is the new me :@#*%:

Happy Happy Joy Joy

Ed

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I guess that that is the point; they have no idea what this new life is like.  They might try to imagine it, but they don't KNOW it.

 

Even my darling wife, who does a huge amount to help me, and has found many ways to smooth the path, cannot know what it is like.  And I hope that she never does :-).

 

I started out taking everyone's well-intentioned advice seriously.  Mistake.

 

Then I rejected everyone's advice because they did not have a clue of what I was going through.  Mistake.

 

Now I evaluate advice, because sometimes there is a gem hidden in there; some ideas from my wife and from a speech/language pathologist have made my life FAR easier.  Still not easy, mind you, but easier than it was.

 

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I'm so tired and my eyes are heavy but yes to everything I read on this thread. 👍

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