Need to hear from others

[ibarker]

Hi,

My dear husband at 47 years old had a stroke Dec 18th 2004. His cartoid artery on left side was 100 % clogged and left paralysis on right side and aphasia. Now 10 months later... and me still wondering how close to normal will he ever get.... really depresses me sometimes. But after the stroke, his brain swelled so bad that they had to remove part of his skull and buried in his abdomen for 4 1/2 months. They put that back.. all is well there. But 1/3 of the brain is dead. And 10 months later, he can walk SLOWLY with a quad cane. His right arm still don't move, he can move the shoulder back and forth now. His speech is still not converstational at all... he says a lot of things sometimes.. like Be quiet... and No cookies left? good morning... Coffee please.. ETC and several things like that just pop out.. and it comes out right... says several bad words..:-) his spirits are pretty good. I WORK with him OH so much and always boosting him , telling him we are gonna fight and win this battle and he says "I know"... and he works hard trying to get better. He is sharp as ever, his intelligence is there.. except for reading and writing... he can read 2 or 3 words.. but not sentences... and he can write a few words without seeing it. He can copy anything.. writes pretty...

 

He just can't get too many words out when he tries. But I do see improvement still going on.... BUT I need some reassurance from anyone out there ... about speech. Do you know anyone that started talking again after a year or 2? And we really work hard on that arm... still nothing yet much ... but we keep working it.... hoping and praying someday.. I just need to hear from others.. Thank you so much for being here!!!!

 

Irene

[Guest joy]

Hello, Irene,

 

My husband is almost two years out so we are not as far along as you are. Hans is still making very small steps toward improvement. Of course, he is much older than your husband. He is 76 and not too motivated, regardless of what I do or say to him. He has been through therapy many times and just won't work with the therapists. He came up with another word two weeks ago and it was party time - big celebration at this little improvement. His words, like your husband's, are appropriate for what is going on at the time. He only has a very few words he says consistently.

 

He has no movement at all on his right side. He is just content to sit in his chair or lay in his bed all the time. He uses his standing frame some but not as much as I would like. I don't push him too much. I make suggestions but do not nag him to get him to do things any more. It makes both of us much happier people. I accept him just like he is now and celebrate any small improvement.

 

Don't give up hope. Your husband has come so much farther than Hans has - so I would be thrilled to be in your shoes. Your husband's "want-to" has brought him a long way.

 

Things may never get back to the way they were pre-stroke but he is still your husband and your feelings for each other can grow day by day as you take care of him. I loved my husband pre-stroke with all my heart but since he is totally dependent on me, I just cherish every minute with him. When he takes my hand and kisses it, my heart does the old flip flops it did 13 years ago when we married.

 

Keep encouraging him and above all else - take care of yourself. You are the head cheerleader now.

 

God be with you,

 

Joy

[Guest PERRYS]

Hello and welcome,

 

It's been almost 5 years since I stroked--12/25/2000--I still can't talk well. I'll be 47 in a few weeks, stroked when I was 42. Anyway, my vocabulary increases every so often, it seems that I learn how to 'form' more words as time goes on. My tongue is very weak and I don't breathe like a 'normal' person does, this keeps me from talking more.

 

I wish I could tell you that I just suddenly started talking, that would be nice, but I can't.

 

Celebrate each bit of improvement, like it or not you're now a cheerleader, be the best one you can be.

[jriva]

 

Hi Irene,

 

My husband's stroke was in May of 2000 and he has aphasia and apraxia. From what you're describing, it sounds like your husband has a bigger spontaneous vocabulary than my husband and we, too, work VERY hard on speech.

 

When my husband was only ten months out, he couldn't read either but his speech therapist worked with him and over time his read has improved to where he reads the entire newspaper every night. This is wonderful for him to have reading to fill up time, since he is also wheelchair bound and has no use of his right arm. His writing is the same as your husbands---he can copy but not initate the written word on his own.

 

We go to speech classes at a local college where students studying speech pathology work with him under close supervision with a professor. We've seen lots of other clients come and go while we've been in the program. Many drop out and give up. Some make enough gains so that they can speak in labored sentences and 'graduate' to being on their own to just keep practicing. Still many others, like my husband, who on the surface may not appear to have gained anything but who have gained cognitively and they are able to get their small vocaluary of words out much easier than in first few years.

 

All strokes and the language disorders they cause are different and so no one can predict if your husband will get his speech back. One thing is for sure, though, we have to keep working on it. All those tiny gains add up.

 

 

Jean

[ibarker]

THANKS TO all of you who replied. My heart goes out to all of you... To Joy.. I totally understand the love thing. I loved Doyle before this stroke.. but my love for him today is so different. I TRULY love him now. I didn't realize how much I did love him til this happened. I was blessed that I have my own business and I can take Doyle with me every day to work ... and I a computer there and be plays the game bespelled.. and does very well with it.. I think alot of the words he guesses but some he does spell. IF I write down .. CAR.. BIRD... HOUSE Etc. I ask him which one is which and he can read them and get them always right. I just wish he could write so he could write what he is wanting.. We sure play guessing game alot. :-)

 

To PERRY...

When you had your stroke.. could you write or type like you did in this letter below? OR did it gradually come back with therapy etc? I thank you for your honesty. Did you get to go back to work ? Doyles dream is to go back to work, even with a desk job there.

 

Jriva--- That is great he can read the whole paper>>>??? That is wonderful.. I hope Doyle can do that someday...Now one thing Doyle does .. is he can repeat any word you tell him to say he says it perfectly. He understands every thing you say to him also. I got lost the other day and couldn't figure out which way to go to get home.. and he was always great with directions and I looked at him and said.. which way dear? And he pointed me back home... Had to turn about 5 times.. but he knew.. ANYWAYS, You dont know how wonderful it is to find this forum. I needed this.. Thanks to you all!! HUGS!!!!

[jriva]

 

Hi Irene,

 

My husband can repeat any word back perfectly, too. His is not a speech deficient caused by paralysis but rather from a transmission problem between the brain and the mouth. Keep working on the reading, it does come back slowly if you work on it.

 

My husband was also good at directions, too....still is but in the first year after the stroke, when he couldn't get out any words, he'd pull or push on the steering wheel when I was going the wrong way. It's a wonder we lived through thoses days.

 

Hang in there! We all learn coping skills when dealing with speech issues.

 

Jean

[spokangie]

Oh boy Jean can I relate to the pulling on the steering whee...

We are in the same boat as Jean's husband, Aphasia and Apraxia,, My husband has given up on going to therapy alltogether..I am still working with insurance to see if I can get someone to come to the house..He realy can use it, I alone can't continuosly push him..He quits too easy and I allow him. I also don't want to nag at him..There are times when I do say that he should be doing more,I get the feeling that I hurt his feelings.

His speech comes and goes just like many others a word here a sentence that starts ok but doesn't end up making sense. Well at least he tries, I encourage him to say whatewer comes, it does not matter if the word is not the right one..Just as long it comes out vocalised, we can correct it afterwards..

It used to be a nightmare driving anywhere with him at first..Not only did he grab the wheel, he would push my arm and yell out..Even though I was not lost, just didn't go the way he did before..We must have some busy guardian angels up there because of this..When he did that I would find a spot to pull over and explain to him that this is the way I know even though he doesn't agree with me..My short cuts were not his so he though I was going the wrong way.. Finally after a year or so he decided only to guide me if I asked him, worked well for us.. He realy knew better ways.

With reading he can read to himself but not out loud..We go over the bills that come he looks at some, lately he just watches me open them, if one catches his interest he will ask to see it..

What I enjoy with my husband is singing, he will repeat and sing with me, his favourite is You are my sunshine..We also sing happy birthday to family members, they get a kick out of that..

 

Thanks for sharing.

 

Angie

[Guest PERRYS]

Hi again,

 

I'm sorry to say that I have not been able to go back to work. Because of my stroke, I am medically retired.

 

I at first could only touch an 'x' on a paper that was about 4 inches high. Before I ordered my laptop I had to show that it wouldn't be a wasted expense. In OT I was brought a laptop and practiced typing on it. My writing keeps getting better with time, though I am very slow and sloppy.

[ibarker]

OH ok Perry.. I think you are doing a great job...

 

Also, there is something that I don't understand... maybe you or someone out there might be able to help me with this one. Speech Therapist gives Doyle homework and its the stuff like.. IS mud dirty?.. Is snow cold?. Is water wet??

and he gets them all right.. and also.. the ones like ... is ice hot or cold.. .. are knives sharp or dull? Is morning Am or Pm? and he has to circle the right one.. HE GETS them all right.. but he looks at me and say ' I don't know" SO I ask him if he an read what he is answering.. HE looks confused and says NO .. that he dont understand or doesn't know how he is getting them all right.. SO I am having a hard time understanding.. why does he get them all right but he says he can't read what it says... I am lost on that one. ANY IDEAS ...??? Thanks again.

 

Irene

[MARY JANE KARNES]

I WANTED TO PASS ON SOMETHING THAT I HAVE BEEN DOING AND IT IS HELPING, SLOW, BUT IS WORKING. I`M HAVING ACUPUNCTURE DONE. I HAVE PROBLEMS WITH NUMBNESS ON THE LEFT SIDE OF MY MOUTH, SHAKING AND STIFNESS ON MY LEFT HAND AND A WEAK LEFT LEG. THE ACUPUNCTURE HAS DONE WONDERS FOR MY LEG AND MY HAND IS COMING ALONG SLOW, BUT IS WORKING, THE MAIN PROBLEM I HAVE IS WITH MY SPEECH, BECAUSE OF THE NUMBNESS I HAVE PROBLEM SAYING WORDS. I KNOW WHAT I WANT TO SAY I HAVE BEEN BLESSED WITH NO THINKING PROBLEMS. I KNOW WHAT TO SAY JUST CAN`T ALWAYS GET THE SOUND OUT. MY MOUTH ALSO HURTS AND I HAVE VERY BAD DRY LIPS WHICH I CAN`T SEEM TO FIND ANYTHING THAT HELPS. HAS ANYONE ELESE HAD THIS LIP PROBLEM.... I ALSO HAVE PROBLEMS WITH PAIN IN MY LEFTHAND, MY BAD HAND, WHEN I`M TYPING WITH MY RIGHT HARD,,ISN`T THAT STRANGS OR DOES OTHERS HAVE PROBLEMS.

THANK YOU FOR LISTENING...

[ssanchez]

Hi Irene,

I am ten years post stroke still clumbsy on my left side and still no feeling yet all survivors heal differently not all strokes are alike.

 

All I can say is be real patient with him I am sure he is trying his best.

We survivors can be a real pain if you know what I mean

[givincare]

Hi Irene,

my husband also has language difficulties. His stroke was in Feb, and he has worked very hard to recover from his massive stroke. (he is 36 for 1 more week!)

 

In response to your question about how he answers correctly but can not read...it sounds alot like my husband. His reading is imroving, but he spends at least an hour a day working on it, usually more. Sometimes when he is trying to read the sentence he will do things like say the word "cut" when the word is knife. It's like his brain recognizes the meaning, but the actual word does not come to him.

 

I think the meaning of what they are reading is in their brain, they just can't remember the words.

 

Jean can explain this better, I have a hard time putting it into words myself!!!

Kristen

[Rich99]

Hi Irene. Myself, ive had 3 strokes, and in the second i totally and utterly lost the power of speech at the base level - all i could say was one word - "word". God knows why thats the only one i could muster at the time, but it was so. Now, 10 years down the line - im a fully qualified graphic desinger, and i now have 4 years experience from 2 different companies.

 

Now, im lucky enough to have been able to bring up a lot of my speech - of course i make many errors....i still cannot jot down numbers on the phone....and i have to ask "sorry?" so many times.....but, i can work in a blue collar job.

 

I cant tell u that theres a magical tough to bring back so much speech....i was luck enough to be able to say a 6-8 words sentence after 2-3 weeks or so...but my god, it was hard, so very hard. The only thing that i can tell u that helped me so much - is to keep thinking positive, positive, and even more positive. Without that, one can lose hope.

[ibarker]

HAPPY HOLIDAYS To you all and thank so much for all the replies.. I haven't been in here much.. shame on me I know. BUT I finally got some time to come in and read all these posts.. GOD BLESS YOU ALL and thanks so much for sharing your stories.... and YES I believe POSITIVE Thinking is a major factor in recovery. My dear Doyle is a year post now... He says a few new words every now and then. His leg is getting better. He still walks real slow with a cane... but I purchased him an EX N'Flex and he does that one hour a day... just got it about 5 days ago. So I hope since its winter and he isnt' getting out as much.. That it will help keep his leg moving and get it stronger. ALSO, I just order an Oxycylce for his arm exercise. HAS Anyone heard of or used these machines. THANKS again for posting... LOVE AND HUGS TO YOU ALL!

 

Irene

[bazane]

Irene.. My husband is 59 , is 15 months post stroke & is paralyzed on the right side, he can walk by himself but uses a Quad cane as he is scared without it...

For the first 10 months he had no movement in his right arm, but now can move his fingers & rotate his shoulder...His speech has come on heaps considering that he was told he would never walk or talk again, he doesn't get the right words for things a lot of the time but we manage & have a lot of laughs along the way...Love & Patience are very rewarding...He has made the most improvement in the past 4 months so you can never stop hoping...

I don't understand what Baz is understanding either as he resads the paper cover to cover & says it is all Bullsh****

It is hard to know what is going on in their minds but as long as they still love us & show it we have to be grateful 7 let nature take its course...Happy Holidays everyone & good luck Irene

[ibarker]

Dear Bazane,

 

Thanks for the reply.. I love hearing from others that are in the same situation as we are. That is great your husband is doing that well... that is good to hear that the last 4 months he improved alot.. thats what I am hoping for also.. Doyle is 12 months post.. and his talking is what concerns me. I MISS HIM talking to me.. so much.... and right now he can say a few words and thats all... he can repeat anything pretty well.. its he knows what he wants to say... but has a hard time getting it out.. BUT LATELY I have asked him questions like I used to and HE DOES answer the right answer most of the time,, example.. I would ask him What is my name? HE KNOWS ITS IRENE.. But he couldn't get it out... Now I ask him that.. he thinks about 15 seconds and says IRENE... that just makes me feel that progress is really happening... its sooooooo slow though... I just THANK God he is with me still.. and I just keep praying... well, HAPPY NEW YEAR TO YOU and keep me posted how your hsuband progresses.

 

THanks again,

Irene

[staavos]

I don't know if this will help but I work with my husband with flash cards and that has been helping him speak more. He had a stroke back in June of 2005 and is recovering. but he has trouble with speaking. he thinks it in his head but getting it out with words is hard for him. but since working with flashcards it has been getting better some. his brain is learning to connect the words with what he wants to say. they are just normal kids flashcards you can buy anywhere. I also made some of our own - I don't know if it will help but I hope so

 

Hi,

My dear husband at 47 years old had a stroke Dec 18th 2004. His cartoid artery on left side was 100 % clogged and left paralysis on right side and aphasia. Now 10 months later... and me still wondering how close to normal will he ever get.... really depresses me sometimes. But after the stroke, his brain swelled so bad that they had to remove part of his skull and buried in his abdomen for 4 1/2 months. They put that back.. all is well there. But 1/3 of the brain is dead. And 10 months later, he can walk SLOWLY with a quad cane. His right arm still don't move, he can move the shoulder back and forth now. His speech is still not converstational at all... he says a lot of things sometimes.. like Be quiet... and No cookies left? good morning... Coffee please.. ETC and several things like that just pop out.. and it comes out right... says several bad words..:-) his spirits are pretty good. I WORK with him OH so much and always boosting him , telling him we are gonna fight and win this battle and he says "I know"... and he works hard trying to get better. He is sharp as ever, his intelligence is there.. except for reading and writing... he can read 2 or 3 words.. but not sentences... and he can write a few words without seeing it. He can copy anything.. writes pretty...

 

He just can't get too many words out when he tries. But I do see improvement still going on.... BUT I need some reassurance from anyone out there ... about speech. Do you know anyone that started talking again after a year or 2? And we really work hard on that arm... still nothing yet much ... but we keep working it.... hoping and praying someday.. I just need to hear from others.. Thank you so much for being here!!!!

 

Irene