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Old 02-04-2011, 01:33 PM   #1
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Smile Hi, I'm New To This Board

I'm new here, but I'm not new to stroke. I'm approaching my 15th stroke anniversary; sometimes I feel like I'm just starting on this journey.
I had a subarachnoid hemorrhage in my brainstem when I was 36. I was at work when "it" happened, and because of some prior medical training I knew I had had a stroke. After telling my boss to call 911 and my husband, I fell over and actually have no memory of the next three weeks.
My family was called, my friends were called, and they were all told to not expect me to pull through. I was told I had multiple MRI's, CT's, etc., etc. After a few days in the ICU I ripped out my shunt, trache and IV's. (I had graduated to a trache and had apparently been on a ventilator for a few days; I don't have any memory of that either, I guess I wasn't amused.)
Anyway, I went through a month plus of rehab; they were relentless! (Physical therapists? More like physical TERRORISTS!) I went home in a wheelchair, but after about a month of that I asked for it to be taken away.
I have a boat load of physical BS I won't go into; what I will "say" is that the toughest part for me has been the loss of independence. Losing the ability to drive really sucks!!
I've been married for the 2nd time for 17+ years, I have a son and daughter from my 1st marriage, and a grandson who just turned three. I can't forget my other "kids" - I have two Lab's, male and female.
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Old 02-04-2011, 02:17 PM   #2
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Re: Hi, I'm New To This Board

Hello Sue and Welcome!
That is such an amazing story, thank you so much for sharing. I am sure your experiences will be a wonderful addition to our little forum here. I just had my first stroke anniversary a few weeks ago in January. I would like to write more, but I can't right now. I just wanted to quickly welcome you here.
God Bless,
Tim

Last edited by Positive Cynic; 02-04-2011 at 02:19 PM.

 
Old 02-08-2011, 07:13 AM   #3
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Re: Hi, I'm New To This Board

Hello again Sue,
I guess I just wanted to ask you a question about your stroke.

Since it has been 15 years since your stroke, do you still have lingering problems after all of that time? I suspect the answer is yes. After a year since my stroke, I am so far from that day, but also do not seem "recovered" but are in the "process of recovering". I still can't talk real well. I know exactly what I want to say, but it never comes out right, and I can stumble around for minutes trying to say something. At least my wife has finally figured the whole think out and she knows what I am trying to say and will be patient if she doesn't understand what I mean and we work together. I probably get more frustrated than she does about it.

I still don't like being around a lot of people. Even friends I have known for years, I can only be around an hour or so. I know that they all think that a year is long enough to be "over your stroke." It hurts you know?

My wife's best friend said to me a few weeks ago when I didn't understand something, "oh, your using your stroke excuse." Wow, that hurt, and I thought, I wish you could be me for one day and see if you still think that.

Anyway that is why I have been on this forum for awhile and keep coming back. To hear from friends here that know exactly what I am talking about in those situations. I hope your day is going well today and hope to see you here again soon.

God Bless,
Tim

 
Old 02-08-2011, 07:53 AM   #4
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Smile Re: Hi, I'm New To This Board

Hi Tim,
Unfortunately yes. Most of the physical BS has remained, and the cognitive has either gotten more profound, or I'm more aware of it.
I'm not comfortable around many people either, word retrieval, names - I have a terrible time with. My short-term memory is terrible; I don't retain much of anything!
When I get focused on something I get this kind of "tunnel vision." I keep telling my husband not to take my seeming avoidance personally; my mom suggests I wear a hat when I'm involved in doing something, that way he'd see.
I've gotten "using the stroke excuse" too, and yes it does hurt! I'd like to have my husband spend a couple of hours experiencing what I go through; even just the balance part of it!!!! I guess it's all relative though. Caregivers have their own set of woes too. Does your wife talk or correspond with other caregivers?

Take care,
Sue
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Old 02-08-2011, 08:03 AM   #5
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Re: Hi, I'm New To This Board

Hello Sue, and welcome to our family of stroke survivors. I am also a long time survivor, with this being my 8th year down the new road.

I have learned so very much here, as we share all of our experiences and frustrations, and laugh at some of our doctors and uneducated friends reactions.

I have had sweeping wellness, followed by periods of dispair...but my goal is to diminish the periods of dispair into little bits.

We all look forward to seeing you here on the boards, and getting to know you. Welcome!

Last edited by writeleft; 02-08-2011 at 08:03 AM.

 
Old 02-08-2011, 09:46 PM   #6
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Re: Hi, I'm New To This Board

Hi there Sue! You sound as though you have a good attitude, in spite of all the problems that plague you, and you certainly write well!

I understand the loss of independance. I was unable to drive for only 3 months and it was intolerable, since I live alone. Not much fun having to rely on other people when you're not used to it!

I've been a caregiver and you're right - there's a whole different set of problems from that perspective. It's one thing caring for a stranger as a nurse would and another watching someone you love - your partner - struggle. You just want things to be the way they were and it's hard to accept they might never be. It's a loss - a big one.

 
Old 02-15-2011, 02:14 PM   #7
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Re: Hi, I'm New To This Board

Sue,

Welcome to the board. It's been almost 8 years for me. I was relatively young when I had my stroke. I was 41. I still can't walk, but I can drive! My "voice" is somewhere between Bob Dylan, on a bad day, and a duck. I guess my dream of being on American Idol are shot.

I've heard the "stroke excuse", too, and I was far less than pleased.

My wife is my caregiver, but sometimes I feel like I'm the one giving the care. Oh well. At least my 2 girls came away from it just fine.

-----------------------------------------------------------------

Positive Cynic - I hope things are going well for you. Way back when, I lived in Chicago. There was a person at my rehab clinic who had way worse "effects" than you. Every time he heard his name, he would look around for a box to crawl into. We never figured out his reasoning behind that maneuver.It makes kicking your friends out after an hour seem normal by comparison. In any event, don't worry. Things change over time. If you need some moral support, let me know. I'll write you. I also have a "paper" that I wrote. It will give you tips, support, advice, etc. If you want a copy of it, just let me know.

Lee

 
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