Still finding new areas that have been affected


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I am a survivor of 11 months now. I feel very lucky to have the seemingly little lasting repercussions compared to so many. My body still wants to be rigid on my right side but I do some Heller work therapy and it helps as long as I keep doing it every other week but it is expensive. Where I am still having most of my problems is confusion and behavior changes that are pointed out to me so often that it makes me self concious. When it is pointed out often enough it makes me depressed. Can I ever trust that I will be "OK" to be in public? I also keep finding more things that I didn't know I lost. How long will this go on?

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Hi Hippity,

 

I think we notice the physical deficits much quicker. Once I got home from rehab and had to re-join every-day life I started noticing more cognitive deficits, and for me it got a little worse around the 7 month mark. But stroke hits cognitive centers in the brain too. Your brain has been injured and needs time to heal...just like the physical deficits. A Neuro-psychologist can possibly help with medication or tell you more about why you are having the difficulties you are having and perhaps how to manage them better.

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Hippity: I think your current residuals are still part of the healing process. Confusion and personality changes may resolve with time and some hard work. My Bruce for a year and a half could not understand that the TV did not have to be on Volume 90. While he understood that it made me crazy, it took time and patience. I had to work with him every single day, throughout the day. Turn TV on, turn down volume, find your channel, turn TV up so you can hear it; if you change channels, volume may have to be readjusted; turn volume down, turn TV off. It still takes him a bit to process, but the difference is 99% better and if he forgets, and he still does, all I have to say is volume. Repetition. As to confusion, do not try to multitask, avoid loud situations, situations with many people as best you can. You know all this and have probably been working very hard on it. Take a break, take a walk, deep breathing, recenter.

 

Do not feel bad or guilty. People can be insensitve, especially if they have no knowledge of stroke or stroke recovery. You are not doing this on purpose and are working very hard at your recovery. Take pride in what you have accomplished and accept that there is still work that has to be done. I have a fellow nurse who treats me like I am the Village Idiot. I have been a nurse for 18 years, I have worked with her for 15 and neither one of us has had a stroke-lol.

 

I think as you recover and move on to new and exciting things, they will also offer a challenge. I compare it to driving. Initially there are so many things that a stroke survivor must put on the back burner and as you recover, you can reintroduce yourself to these things. Since you have not had to deal with them for a while, sometimes the brain needs a rebooting so to say. Yes, Bruce knew how to drive, had been doing it since he was 16-actually earlier, since his family worked a farm and he was recruited early on to help out. If he ever gets to drive again, I know while he may think it is second nature, will require some patience and relearning. Just another challenge, honey. And one thing all of you are not used to, has to again become routine. Just another little step up. Prayers and hugs and know there is little doubt you will succeed. Best, Debbie

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You said, "Can I ever trust that I will be 'OK' to be in public?"

 

Listen to me,

 

You were okay before your stroke,

 

You are okay after your stroke.

 

You are always okay to be in public.

 

No matter what you feel is wrong with you,

 

You are okay to be OUTSIDE WITH OTHER PEOPLE.

 

Deficits, real and imagined, do not automatically make you unacceptable, unlikable or unlovable.

 

Stroke or no stroke,

 

you are acceptable,

 

you are likable

 

and you are lovable.

 

You are okay to be in public today, tomorrow and forever.

 

You are always enough.

 

Rachel, a caregiver.

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You said, "Can I ever trust that I will be 'OK' to be in public?"

 

Listen to me,

 

You were okay before your stroke,

 

You are okay after your stroke.

 

You are always okay to be in public.

 

No matter what you feel is wrong with you,

 

You are okay to be OUTSIDE WITH OTHER PEOPLE.

 

Deficits do not make you unacceptable, unlikable, unlovable.

 

Stroke or no stroke, you are always acceptable, likable and lovable.

 

You are okay to be in public now, tomorrow, forever.

 

You are always enough.

 

Rachel, a caregiver.

Thanks. I know you were talking to Hippity but I needed that. I bet a lot of us survivors do.

 

Jamie

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I am almost 9 months post stroke and I find things can be different each day. While I am blessed with little physical or cognitive deficits, I can tell they are there.

 

Rachael thank you for posting your lovely words! It helps so much to be reminded that a stroke is a stroke no matter how small the deficits are. You were injured and are different, but you are still a valuable human being!

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HI IM ALMOST 4 YEARS POST BSS . FOR ME, I NOTICE IM MUCH QUIETER THEN I WAS PRE STROKE.IT SEEMS PEOPLE WILL SAY..WHAT, I DIDNT UNDERSTAND YOU OR ILL SAY A WEIRD OFF THE WALL COMMENT AND ILL THINK..NOW WHY DID I SAY THAT OR ILL LAUGH WHEN THE COMMENT ISNT FUNNY AND I THINK..OH GEEEEZ! BUT THIS DOESN T STOP ME FROM GOING TO PARTYS OR GET TOGETHERS OR RESTAURANTS ETC.... I STILL GO. PATTY PS AND THANKS RACHEL TOO FOR WHAT YOU SAID!

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Guest furiawill

Thank all of you for your support. It brings tears to my eyes to know that someone understands. A very heartfelt thanks... Hippity

HIPPITY,

HERE ON STROKENET, WE ARE FAMILY AND WE DO UNDERSTAND. MAYBE THAT IS WHY WE ARE SURVIVORS; SO WE CAN ALL SUPPORT ONE ANOTHER. WHO KNOWS? NEVER GIVE UP! WE'RE HERE FOR YOU.

-WILL

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hi hippity,

Don't be oversensitive if ur family points out'aberrant' behaviour to you when u are in public.

they have ur best interest at heart and with reminders and repetition, u'll become confident to carry yourself in social situations

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Good Day~

 

I had an AVM hemorage in Dec. 1998 or 97. Even now i experience what your going through & have

had to adjust to the "new me" after stroke. To see me outside i'm normal except for the fact i

walk w/ a cane & wear a brace & drive short distance w/ left gas pedal. I'm a sensitive person

& that will never change. I don't want to be a burden on family, those who I love most of all,

behavior as you said can not be helped. Knowing we all survived for a reason is what I have to

return to.

 

Acceptance & my faith in God has brought me through. "You will be Okay" as Rachel put it so

well. "You are always enough." But we are so thankful to have each other who understands on this

site. Bless you dear one, never be reluctant to reach out, as there will always be a hand to

hold along the way. Thanks for sharing your heart with us! yOU ask how long does this go on?

We are all different but for me I'm still adjusting. I try to keep up exercersing with what

litle i can do. (What is Heller work therapy?)

 

Take care & keep us posted on how your doing? (My neurosurgeon put me on anti-depressants after

I had brain surgery to remove AVM. To recover in nursing home & rehab as i regained feeling on

rt. side & relearned to walk, talk, swallow, write ect.) I'm off now. :)

 

As Will said never give up! Have a good day~Nancy

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Sebi Smiles at Rachel Big smile.

 

 

 

Hippity When your brain was deprived of oxogyn part of your brain died off. picture that, then all the small bloodbvessels that use to go to that area of brain slowly died off as well, Causing extenuating defisits. I think this is what Dean had told me. Dean, Are you listening. I think knowing a problem is half of solving it. LOL Funny I have the same problrm but i forget 1/2 of everything. every day is new (: Just glad to be here and knowing if God takes me there is no worries.

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I'm about 10 months post stroke and in the same boat, still discovering those personality or mental traits that are different. I chalk it up to the fact that I had 40+ years of becoming who and what I was up to the moment before I stroked. I've only had 10 months to discover who and what I am now. I can't possible expect to go over 40+ years of "wrinkles" on the brain to discover which ones were "ironed out" by the stroke in such a short amount of time.

 

Fact of the matter is that we will spend as many years discovering what the differences now are as we had to become who and what we were prestroke. There is no fast track to finding out what has gone away or changed. Only time and experiences will do that. It's part of the acceptance journey, coming to terms with that fact.

 

Some days I struggle with that, other days it doesn't seem to bother me. Will we "ever be all right again?" Well, as far as I can tell, we are alive and we are able to do things like socialize with friends and family and post questions or blogs on this site. I think that pretty much makes us all "all right."

 

 

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Lydia,

I am 14 years post stroke and I still find things that were blown out of my memory. It is like stepping on a rake in the dark and having it come up and hit you on the nose.

hoststephen

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Hippity, This may be a hard question to hear: Are those people who are so willing to point out your "flaws" just as willing to point out "good" things, such as improvements they see? If not, they are packing alot of negative energy, and I'm not so sure you need to be listening to them right now. If you can, avoid them, and if you can't avoid them, take your concerns to someone you trust, join a stroke support group if not in one, come here, or to a counselor. As to why you may be seeing more deficits: I agree with what everyone has said. But, I think some of it may come from the fact that as you branch out, and try to do more, you are finding areas of concern that were always present, but you did not know it,because you hadn't yet challenged that part of your brain to work. Example: One day I found out that I couldn't whisper. Since I hadn't tried to whisper before then, I didn't know that I couldn't do it. Or, you and your therapists paid so much attention to the obvious areas of concern, that other areas were not looked for, or were found as Debbie says, but put "on a back burner", and then forgotten. Best, Becky

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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You said, "Can I ever trust that I will be 'OK' to be in public?"

 

Listen to me,

 

You were okay before your stroke,

 

You are okay after your stroke.

 

You are always okay to be in public.

 

No matter what you feel is wrong with you,

 

You are okay to be OUTSIDE WITH OTHER PEOPLE.

 

Deficits, real and imagined, do not automatically make you unacceptable, unlikable or unlovable.

 

Stroke or no stroke,

 

you are acceptable,

 

you are likable

 

and you are lovable.

 

You are okay to be in public today, tomorrow and forever.

 

You are always enough.

 

Rachel, a caregiver.

 

thanks I needed to hear that! I don't feel I am good enough, etc - people say I am damaged so I am going to print this out

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