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Old 05-28-2011, 09:40 PM   #1
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Massive Stroke - need some positive thoughts

Last Sunday my 65 year old Mom had a massive stroke (a blood clot on either side of her brain) Obviously I am extremely worried right now. She is very sharp mentally (knows who everyone is, asks about things at home was even worried about missing an upcoming dental appt) - can talk somewhat (but is difficult to understand) She is unable to move her left arm (but will with pain stimuli) and can move her left foot on and off. The right side is fine. She is VERY tired. She is not able to swallow properly either. My husband, kids and I were in Mexico with her just 6 weeks ago. I'm overwelmed right now. Would love to hear any positive experiences, thoughts of what I can do to help her, questions I should be asking the Doctors, etc would be greatly appreciated.

 
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Old 05-29-2011, 06:11 AM   #2
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Re: Massive Stroke - need some positive thoughts

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Originally Posted by averydog1 View Post
Last Sunday my 65 year old Mom had a massive stroke (a blood clot on either side of her brain) Obviously I am extremely worried right now. She is very sharp mentally (knows who everyone is, asks about things at home was even worried about missing an upcoming dental appt) - can talk somewhat (but is difficult to understand) She is unable to move her left arm (but will with pain stimuli) and can move her left foot on and off. The right side is fine. She is VERY tired. She is not able to swallow properly either. My husband, kids and I were in Mexico with her just 6 weeks ago. I'm overwelmed right now. Would love to hear any positive experiences, thoughts of what I can do to help her, questions I should be asking the Doctors, etc would be greatly appreciated.
Hello averydog,
Welcome to this forum. Yes what you are going through is overwhelming. Try not to worry. That she talks and understands you is a very good sign. I will tell you what happened to me after my stroke. I was in the hopistal for 7 days. In that time, I could not remember my wife's name. I also slept most of the time and at the time I thought they gave me a sedative. but they didn't. Sleeping is a way your brain starts to re-build itself. So let her sleep when she needs to and don't worry about it. The more the sleep the better for her.

In a stroke, there is a dead spot in her brain and it will not come back, but her brain is already working and re-wiring around the dead spot to get her better. She will come back to you, but it takes a long time unfortunately. Just so you know, when I got home I could not read or write and I am sure my wife was concerned and I was too. But it came back slowly and here I am today. All so i was afraid and felt lonely. I would suggest she talk to other stroke survivors as soon as she can. I mean don't rush it, in her own time, but I will tell you that this forum was a life saver for me. But please don't worry if can help it. As long as she i talking and active she will be ok. It takes patience to everyone involved. It is going to be a family project. And I must say that she is going to be a different person when she comes around. That is not a bad thing, it is just what it is. She will be better. Remember that a spot of her brain is missing. Our brain is basically who we are. So there is something gone, so she may be different, but I feel I am a better person after my stroke, I really mean that. So if you have any questions please feel free to ask anything. There is no stupid questions. You are stressed out too I am sure, but you have good friends here to help you as much as we can.
God Bless you and your family
Tim

Last edited by Positive Cynic; 05-29-2011 at 11:22 AM.

 
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Old 05-29-2011, 09:38 AM   #3
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Re: Massive Stroke - need some positive thoughts

Hi averydog,
I am fairly new to this forum. My husband had a stroke back in Nov 2010.
I just wanted to tell you i KNOW how worried and scared you are.

My husband was very tired and slept a lot after the stroke too, so like Positive cynic said, try not to worry about that part..it's normal and healing.

I would like to add how important physical therapy is very early on after a stroke. In my husband's case he had other complications with pneumonia and was on a respirator for quite some time following and very weak. Because of that he didn't get the PT right away. If I had known then what I know now, I would have insisted on PT right away or at the very least at a therapist come in and show ME what exercises I could help him with to maintain range of motion in his hand/shoulder and leg. Because it was soo long without PT it seems to be harder getting function back. He IS getting it back tho..so that is good.
So one question you should ask is how soon they can start some therapy. Even just moving the hand arm and shoulder for her. Rub bad leg and arm often to remind her brain it is there. Move her fingers and arm...
Another thing I found out later that seems important is using the commode, toilet or even bedpan asap. That is another thing that slipped by us and caused problems later on.
I think sometimes it's a matter of having to remind the brain of these simple functions that are taken for granted. If the wiring there is messed up, I think the sooner these things are worked on the sooner the brain will start to rewire to get these functions back under control.

Hubby also had swallowing issues but thankfully over time he overcame them and is now able to eat normally. He started with no liquids or food whatsoever then was put on what is called a dysphasia diet. Thickened liquids(apparently thin liquids like water they are more apt to choke on?), and foods were pureed.

If it makes you feel any better know that my husband is now able to walk talk and has use of his bad arm and hand and is continuing to make improvements.
Your mom WILL get better. It is a hard road, I am not going to lie about it, but she WILL get there. Maybe she will not be exactly the same as before, but she will improve and she is still your mom

Like I said before, I am fairly new to this, so if what I said above is wrong, anyone with more experience please feel free to jump in and correct things.

Talk to your mom every chance you get and try to remain upbeat and positive.
Funny how my hubby seemed so alert and aware back then, answered all questions, asked questions of his own and remembered things to ask about here at home...but looking back now he says he barely remembers anything from that point in time in the NICU. After all he went thru there tho, I think that might be a blessing in disguise?

 
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Old 05-29-2011, 10:20 AM   #4
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Re: Massive Stroke - need some positive thoughts

Positive Cynic and Kel61

Thank you for your responses - it's nice to know that there are people out there who have made it through this with positive outcomes. My Mom is very determined and so I'm confident that if there is a way to pull through she will do it. Thank you again for sharing your experiences - it is very helpful.

 
Old 05-29-2011, 11:56 AM   #5
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Re: Massive Stroke - need some positive thoughts

Hey Kel,
Everything your wrote was correct. So don't worry about that. Your post was perfect. Do you see that my stroke did not affect my mobility, only my cognition. So that is why every stroke is so different and to be honest, the doctors don't know what to do with us. I do remember that my doctor in the hospital, I was asking questions when I was able, and he really could not answer me my questions. He told me that "a stroke is a mystery." at least he was honest and not trying to b.s. me, so I was grateful for that. I really had to find my own way after a stroke and I did. I do believe that every stroke survivor has to recover themselves at some point. I felt useless and afraid and stupid after my stroke.

But my and my wife and family got through it so how. I have read of couples that split after a stroke and it really hurts me to see that, but I also understand it. Your life is gone in an instant. I pray to the people in Joplin after the tornado. But that is really what a stroke like. You wake up one day and everything is gone. And those lovely friends in Joplin are making up the pieces of their lives and are going ahead. That is all you can do really. I will help you and pick up a broken lumber of your life and put it in the pile of broken thoughts with you so you can clear it up and move on so you can build your new home. and thousands help will help you too. Whether through phyical help or just prayer and love. just like in Joplin. It is a world of love and hope. Don't ever estimate the love and hope of the human spirit. (I had to do it myself... I am an idiot and I did it... so anyone can)
this is also for you averydog!!!!
God Bless,
Tim

Last edited by Positive Cynic; 05-29-2011 at 12:12 PM.

 
Old 05-31-2011, 03:40 AM   #6
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Re: Massive Stroke - need some positive thoughts

Dear Averydog, and to Kel...

Welcome to our little (always growing) family of stroke survivors and their loved ones. We are here to help.

I have a wonderful story of survival and recovery from my 4 strokes I suffered at the age of 43...I am 50 now, 8 years behind me now. While my strokes caused me kidney failure and a heart attack as well, and I was essentially asleep for the first entire year, could not talk, walk, think or remember anything for several years...I have made a remarkable recovery and have devoted the last 3 years to working here, to share my story with others, to share my hope and positive message to those like yourself, at the beginning of that long road. It has turned itself into a job I never would have expected, and has actually changed my life. I give this place and the people here the credit with my greatest recovery and that has happened within my heart and my head. Reaching out to others has been simply wonderful in getting myself back into the world, from the loneliness and fear I had, to the place of confidence and hope I now live in.

Stroke changes you forever, that is for sure, but in my case, and with so many others that I have talked to over the years...it has left me a better person, a much more sensitive and thoughtful person, an appreciative person, a more loving daughter, mother and friend. What started out a free fall, where I felt I had no control over my thoughts, my body or my situation...it very slowly turned into a life taken one thing at a time, one thought at a time, one idea at a time. The act of losing what seems like everything in one brief moment, and to slowly regain it one bit at a time is quite a feat. Much of it I was never aware of until much later. In fact in my 8th year, I am still recovering, still learning about my self and my losses verses my gains, and I am sure I have gained more than I have lost. What I have lost physically, I have gained spiritually and personally. It is the sense of appreciation for every day I get to wake my son up and then put him to bed...that is everything to me, and the rest is cake!

So, embrace this huge event in your life, and know that there is a future after stroke, one that can be rewarding, loving and kind. I give a lot of credit to a strong positive attitude and the ability to learn to accept without question that everything will be OK.

Having the ability to connect with others who can understand is key for me. There are so many things the doctors do not know, but we do. The nuances, the similarities between all of us, as well as the differences.

I hope my words have helped a bit, they just flow out without a thought, like water flowing. What a long way from the days I could not even hold a pencil or a thought! For all the thoughts I could not express, I am making up for lost time now! I wish you the very best, and look forward to our continuing friendships and support.

Janet

 
Old 05-31-2011, 07:40 AM   #7
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Re: Massive Stroke - need some positive thoughts

Thank you, Janet. That is very inspiring. Gives me hope

 
Old 05-31-2011, 08:51 AM   #8
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Re: Massive Stroke - need some positive thoughts

Beautiful Janet.
Thank you.

 
Old 05-31-2011, 10:02 AM   #9
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Re: Massive Stroke - need some positive thoughts

Thank you so much Janet. You, and all the other caring people on this forum are a true inspiration.
When I get discouraged about hubby's condition,when he is feeling down on himself.. you make me remember there IS hope..there is ALWAYS hope, and there IS a light at the end of the tunnel.
We'll just keep on trucking, one day at a time, heck one minute at a time.
Hopefully one day he will come out on top like so many of you here. I think the first step is his being able to accept that things are going to be different. Not necessarily BAD...but different. I don't think he's reached that point yet.

Thank you ALL for the boost I needed today.

 
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Old 06-04-2011, 03:56 PM   #10
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Re: Massive Stroke - need some positive thoughts

so often Janet you and Tim include in your posts one sentence that hits the nail on the head ...or my head at least. Yours Janet, was your belief that Everything will be OK.
TIM'S was...throw away the guilt It is NOT your fault.
Blessings my wise friends !
Nancy

 
Old 06-04-2011, 04:03 PM   #11
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Re: Massive Stroke - need some positive thoughts

sorry averydog and Kel...I forgot mymanners. Welcome to our group of survivors and caregivers. There are some knowledgeable and kind people here who are committed to helping one another and you

 
Old 06-05-2011, 12:23 AM   #12
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Re: Massive Stroke - need some positive thoughts

Every time we respond to each other, it is in hopes of sharing a bit or ourselves to another in need... although we are not always aware of the impact of our words have on others. If there is anything that I say that offers anyone a glimmer of hope, or a boost to keep on trying, then I am the one who is blessed. Knowing that each of the long years behind me finally has offered me enough experience and recovery to pass it on to another, is still amazing and wonderful to me. The ability to share is my most precious gift, one that none of us are guaranteed when our minds have been assaulted so severely.

I clearly remember one day in particular when I was sitting on my patio, realizing that I could not keep one thought together long enough to connect it to another..that I could not think! I certainly could not talk yet, but I could not think! It was terrifying, but there was not a thing I could do. It was no more than a realization that I could not act on, much less tell anyone. I wonder why I can even remember it so clearly, but I do.

Perhaps it is just to have a point of reference to look back on, a point in which to base my progress, the bottom of the barrel so to speak. From that point, my biggest need was to feel safe. Being in the care and comfort of those I knew loved me was so important. I knew I couldn't do anything for myself, much less know what that even was! For both of you caring for your husbands ( and all the others out there), your ability to offer them the comfort of your love and protection is the deepest need in the earlier days and months.

Once we are able to begin doing more for ourselves, the needs change to that of patience and understanding. My caretaker never pushed me to do anything, or even wonder when I should be doing this or that. He always told me I was fine, just as I was, without any goals or deadlines for any progress. Looking back, I appreciate this the most. There is no hurrying, and once any new task is begun, mastery is not the next goal. My recovery did not follow a direct path, far from it! A little here, a little there, all along feeling fine with anything I could do, as well as what I could not. With each little bit of growth, my confidence grew...but in the tiniest increments. What often was not ever apparent, turned out later to be building blocks toward accomplishments, often not ever obvious until way later.

The more you can focus on the positive, the more positive will appear. The more you look for it, the more you will find. The more you practice it, the easier it will be to spot in in places you may have overlooked before.

Please also look for opportunities to re-charge your own positive energy by enjoying things you love, allow yourself the time and space to feed your own needs and wants. We on a long road, but we can take that trip together, which makes it all the better for everyone involved.

We are here to help, but you are helping others while you are here as well...don't forget that part! For every one that responds to your posts, there are hundreds if not thousands more that will read these words and gain their own hope and strength from you.

Love to all,
Janet

 
Old 06-05-2011, 05:08 PM   #13
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Re: Massive Stroke - need some positive thoughts

Thank you , Janet. It has been 14 days now since my Mom's stroke and we have seen amazing things happen already. She had a blood clot on either side of her brain, a bleed, developed pneumonia. She then had massive swelling that the Drs. feared would kill her. I'm happy to say that the swelling is going down, and the pneumonia is not a threat any more. In the beginning she was very difficult to understand and now her speech is quite clear. They will start her on liquid foods tomorrow and hopefully remove the catheder. There is still paralysis of her left arm and leg. Her mind is very clear and she is VERY aware of what is going on - she is getting quite down (which is obviously a worry) We can see the progress that she is making but she is seeing herself as a burden and trapped in a useless body. I understand that the hours for her must be painfully slow and she has nothing but time to think about where she is at. Wondering if this is something that any of you experienced and how I should handle it. We are being very positive when we visit. Marking achievements down so that she sees them - 3 days ago - couldn't swallow ice chips - today did it!!! but I can only imagine what it must feel like for her. I've been bringing my three children in (16, 9, and 5) to visit often - that seems to be a distraction as well she is now able to be wheeled out of her room for a change of scenery. Any other thoughts of things I should be doing - should we look into having a counsellor come in, is this a normal part of the greiving process, any ideas would be greatly appreciated.

Thank you for all your help so far. I really appreciated your knowledge.
Lee-Ann

 
Old 06-05-2011, 06:02 PM   #14
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Re: Massive Stroke - need some positive thoughts

Lee-Ann,
It sounds to me like your Mom is doing very well all things considered. I can't say what it's like from their point of view..but everything you are describing..the getting down on herself and "feeling like a burden" is what my hubby went through too. Is still going through at times. Even the part where you say YOU can see the progress she is making, but she doesn't see it that way.All I can suggest is staying positive like you are doing. Keep encouraging her, things WILL get better. It just takes time.


Is your mom getting any physical or occupational therapy yet? Like I said before, it is really important to keep her limber and remind her of that left side.
If you see her lying or sitting there with her hand curled in a fist, straighten those fingers. Work them for her. Maybe even roll up a wash cloth to put in her hand. Try massaging her arm, hand and shoulder. Gently move her arm for her at the shoulder. I think my husband's was left unattended for too long, which caused problems later on. I just wish someone had told me early on to fight for PT for him. Same with her leg. If you or someone close to her can massage it and bend her knee and ankle. I think it will help a lot. See if you can get someone to come in and work with her and show you and your family what to do.

Major Woohoooo! for starting liquid foods tomorrow. That is HUUUGE!!
Congrats to your Mom!

((hugs))) to you and yours Lee Ann

~Kelley

 
Old 06-05-2011, 06:37 PM   #15
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Re: Massive Stroke - need some positive thoughts

Thank you , Kelley.

Yes - she is getting physio - once/day and we have had them teach us what to do so we are doing it another 2 times/day. My Mom worked in a hospital so she has alot of friends who have delt with people who have had strokes and they keep saying that keeping the joints moving is imparative. The therapists don't come in on the weekends and already i could notice some stiffening from missing out today. Thank you for your advice. Keeping fingers crossed about the food tomorrow. You guys are awesome 0 really helpful to talk to someone who has been there. Will keep you posted.

Lee-Ann

 
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