Deb in Tucson needs help

[Deb in Tucson]

Hi all. Another Deb here - I'm the one in Tucson. Msg boards are new for me so go easy on me and my errors. I've read the instructions but I'm so frazzled right now even a bowl of ceral is a challenge. Here is where I need help, please.

 

I turned 51 on 11/22. My birthday present from my man, Pete - 53, whom I've been with for 6 years, was a 9 diamond band and a marriage offer, which I accepted. On 11/24 he stroked. After reading so many of the sad stories here and the awful damage done to others I guess Pete's stroke was relatively minor, but for me it's devastating. His stroke was from a blood clot in the brainstem. The first 3 days he was critical in ICU. Near the end of the 3rd day his BP was still "wacky" (Dr.s words, not mine) but was stable enough to move Pete to telemetry, where he remained for 4 days. He was then moved to a recovery ward and today finally moved to rehab. Its been 12 days now and his vision has cleared, both eyes track together, he can sit up unattended for a minute at a time, his speech is understandable though very slurred when he's stressed or tired, and we are so very, very lucky to find that his memory and intellect have not been affected. He is, however, paralyzed on his entire left side and this is making him crazy. It makes him mad. It makes him mean. He is left handed and trying to do things with his right *beep* him off so much, but the worst is his belief that he will never ride his bike again. Our motorcycles are the loves of our lives and riding is his biggest love. I've tried to tell him he'll get better and we'll ride again, or we'll trade the two bikes in on a trike if we need to, that he'll be back out on the road eventually; but he doesn't believe it and he gets to acting so awful. He's all sweet and kind to the Drs, nurses and techs, but is an ass to me. He takes his frustrations out on me and makes me cry. He even kicked me out of his room this afternoon and told me not to come back. All this from the man who wanted to marry me 2 weeks ago.

 

I know he's just frustrated and stressed, but this is killing me. I don't know what to do. All my encouragement is met with "Bulls**t!" He says I can help him if I get him some answers. So here goes. On the average, what is the recovery timeline? I know, I know, every person and every stroke is different, but Pete's way of thinking is x number of people with a stroke similar to his will all have some recovery that can be computed in an average. He wants to know what to expect. Please, can anyone give me something? Anything, encouraging or not. I just need some answers. Other than me the only person who gives him encouragement is his shrink (who specializes in stroke patients) and of course the shrink says nothing but "I've seen many in your condition recover 100%." For the most part the Doctors say "whatever you've achieved by six months will pretty much be it." - that I DON'T believe, but I think Pete does and that's what scares him so much. He wants to see improvement NOW so when he hits that "6 month mark" he'll be well.

 

Well, that's it. I guess I should have put the questions in another topic, and if that's so, maybe someone can move this for me and help me get this msg board thing down.

 

I very much appreciate any info anyone can give me and any directions anyone can point me. I'm overwhelmed right now, sad, hurt, scared and feel very alone. I have no family here and what few friend we have almost act like stroke is contagious. I think they are uncomfortable with Pete's condition and don't know what to do or say. Many thanks. - Deb in Tucson

[dstraugh]

Hi Deb in Tucson,

I'm Donna from Mesa. I'm just shy of being 2 years post stroke - mine was on the right side of my brain caused by a clot. Left me with left sided paralysis and weakness. I wish there was an answer I could give you but each person progresses differently and responds to therapy and meds differently. From what I have experienced, I regained the most during the first 6 months, then recovery process slowed down until the year mark. As I stated I'm almost at the 2 year mark - anniversary date in Jan 1st - I'm still making progress. My neorologist told me a few months ago I would not gain anything else back and get on with my life. However, I am determined not to give up. I had therapists tell me it could take up to 10 years for me to fully recover due to my age - 52 - Miracles can and do happen.

 

I'm sorry for what you and Pete are experiencing. It's not the end of the world, people generally don't know how to react to us survivors and our families. By the sounds of it, Pete is making good progress. You need to remember to take care of yourself too. Pete's grumpiness and meaness is a normal reaction as we tend to strike out at those we love; we sometimes have a difficult time dealing with our frustrations and take it out on those closest to us.

 

So, for both of you - Hang in there - take care of each other, be thankful he's a survivor. Hope you have a blessed Holiday season.

 

Oh and Deb, you did great in your first post. You'll find everyone on this site willing to provide support, encouragement, shoulders to lean on, and virtual (((hugs)))

[bstockman]

Hi Deb. I really don't know anyone here who could possibly give you a time line. We can let you know how our recovries went, but that is all we can do.

 

I had a clot on the right side of the brain. I was left side paralyzed for awhile, My arm and hand came back first, I had to learn how to control my arm and re-learn fine motor skills. I started walking with a walker and within a few weeks I was using a cane. my walking improved in the 2nd yr post stroke so through out all the 6, 12 and 18 months ....it is not even close. Recovery can and will continue for years.

 

I am 3 1/2 yrs post stroke and although my progress is not the milestones as in the first yr.. i consider it "fine tuning"

 

I have found the more I repeat an action, the easier and better it gets.

 

I have regained a lot of my physical/motor abilities .. I walk with a limp, at a much slower pace. I have some left side weakness, peripheral vision loss and cognitive impairments.

 

The first year is the harderst, you are trying to re-learn, trying to be "normal"

 

Don't be alarmed if Pete sleeps a lot, activies can really make you tired.

 

Push for all the rehab, PT, OT and speech therapy you can.

 

on the main message board in Classic Postings is "A Letter From Your Brain" you may want to read it and print it out for Pete.

 

If he can control his emotions to others, he needs to know you are not a "scape goat" and his nastiness is not acceptable. you should talk to his "shrink" emotional lability can be part of a stroke deficit and can be helped with medication and learning to control.

 

You may want to go to community drop down menu and read others BIO's

 

I have come to accept and work with the deficits i have. I enjoy a full life. Yeas there are things i miss, but I am also a realist.. I am happy to be here and enjoy my husband, grandkids, animals, etc. It takes time to grieve and work through what has been lost, it takes time for recovery. Hang in there. :friends:

[givincare]

Hi Deb,

 

I am sorry to hear of your fiance's stroke. My husband was 36, and had his stroke about two years ago. His stroke was a clot and mostly damaged my husband's speech and gave him right side paralysis.

 

The statement about 6 months... well there's both truth to it and yet it is also a load of crap. What I mean is, the most visible, dramatic recovery will probably happen the first six months, but the recovery will never stop as long as he doesn't stop trying to recover.

 

It will be a big part of your job as caregiver to be a cheerleader. It will also be equally important to allow him to grieve his losses, and grieve with him- this has affected your life tremendously too. They key is just to recognize when it's time to pick yourself (and him) back up and face the day's challange with the best attitude you can muster. It is after all, a day to day challange.

 

With his mean comments and such, this may be a result of the hurt, anger, frustration he has been feeling. It may also be due to the damage to a particular part of the brain that was affected by the stroke. I would definately talk to his doctor about it, so that if there is something that can be done medically it can be addressed.

 

Good luck,

Kristen

[2ndChance]

Hi Deb - I'm Rene in Tempe. I'm 4 years post stroke. There has been no measurable improvement in my paralysis since I left the hospital one month after my stroke. But there have been major improvements in my mood and energy. You should expect Pete to take a minimum of 6 to 12 months to stabilize emotionally & physically.

 

Stroke survivors never "recover" because our brains are permanently altered. But we do adapt to our new brains. It takes a lot of time. He will adapt, because he has no choice! But everyone reaches acceptance in a different way and at different times. If he is still exhibiting hositility after a year, then you might have to seek out his family for assistance in making decisions for him.

[tom71]

Deb,

first of all Welcome to the group :welcome: I'm afraid I won't be able to answer your question any differently than all of the other people, I stroked at the age of 31, Ihad just bought a new fatboy, a couple months before the stroke, needless to say I had to sell it as bad as that hurt, but it has been 4 years for me now and I still want very badly to ride again, I too have thought about a trike, but right now they are too expensive for me considering I missed 3 years of work, however to answer your question a little better I'm now 4 years post stroke, and still have no left arm function, walk with a limp(drop foot), good luck!

God Bless,

Tom

[Guest lwisman]

Deb in Tucson,

 

Two weeks is a very short time in stroke recovery terms. It is going to take some time for him to deal with the fact that the stroke has irrevocably changed his life. Give him lots of support and be patient (I know that is easier said then done).

 

I also had a brainstem stroke. The early outcome of brainstem stroke is not good, but it is often true that cognitive skills are not affected. This is a very very good thing. Especially long term.

 

Keep researching and asking questions. It sounds like you doing a good job.

 

The issue of riding motorcycles is probably a ways down the road.

 

BTW, you did not mention are there family members and/or close friends who can help you?

[exroofer]

hello deb from tucson not really sure where to start simply because unlike some things i believe there is no such thing as a time my stroke hit my left also and i love to ride any kind of bike but for me 2 wheels is not gonna work for me i have seen some real beautifull trikes out there of course it will have to be an automatic.

mine hit in may-2003,i'm still optamistic and just need to learn how to enjoy life/ things in a much differant

way- now the only time line i've heard of is 2 yrs- if your fiance can move his arm or leg at all or has feeling there, his recovery even if not at 100% will be quicker than alot of others it will just take (time) i'm not an expert by no means just 1 of the many good luck

john

[kanderson]

hi debbie, my name is kimmie from phx. i had a clot stroke on my rt. side of brain which left me paralyzed on my left side at 48. i am almost 5 yrs post stroke and able to walk with a cane and walk without it for short distances. my arm has not returned yet but i pray it will some day. i am sorry you are having to experience this terrible episode, but please hang in there, this is not an easy or short road. he needs all the therapy he can get. i wish you and your sweetie all the best. and he will be surprised on what he can get back. blessings, kimmie

[jwatrous]

Dear Deb -

This is a real tough call as every stroke is different as well as the recovery time. I was told that it really depends on what kind of damage that person has had. -

My stroke was in 1985 at age 39 :Tantrum: , and being newly married with four kids, the stress was HUGE. But, if you are not sure what to do, have a heart-to=heart with his doctor, before making a final decision -

 

I used to play the piano, so. like his love of his bikes, sometimes negative adjustments must be made

 

Life goes on

June :cheer:

[fking]

Debbie,

 

Welcome from Tucson, I think in due time he will consider a three wheel cycle in leu of not ever riding again since it is so dear to his heart and yours.

 

It would be difficult to tell how much time is involved in his recovery where he can ride again. I use a scooter now and have been for a couple years. I would imagine I could handle one on the road, but like Tom said the price ranges these days are way up there.

[kkholt]

Hi Deb,

 

Like others, I can only tell you of our experience. I'm caregiver to my husband who had a stroke 16 months ago, at the age of 47. He is a pilot and has not given up hope to fly again. His stroke caused total right side paralysis, with some memory issues, and only just a bit of expressive communication impairment. After a month of in-patient rehab he left the hospital in a wheelchair, within a short time he was using a cane (should have been using a walker but refused). He also left the hospital with no use of his hand/arm (flacid paralysis). Within 10 months he was riding his bicycle, and today he gets around quite well. Uses his cane for extended walks, and he has some movement in his arm/hand - not a lot of function, but he can use it to help tie his shoes, pull his pants on....that kind of thing.

 

Take care,

 

-Karen

[lisas]

:welcome: Deb,

 

I'm sorry to hear of your fiances stroke. I havn't been on in a while so that's why I'm answering you now. My daughter Rachel who is now 23 had her stroke last Feb. 17th 2006 at the age of 22. Talk about a shock to her and the whole family and community.

 

A the others have replied, everyone is different in their own recovery. My daughter is recovering everyday. Some days are better then others. She had a massive stroke caused by blood clots of the heart that broke off to the brain. It left her paralized on her entire right side, unable to speak, swallow, or toilet. I am happy to report that today she walks with a quad cane, is in therapy and speech is improving daily. She still can't use her right arm, but were hopeful.

 

It has been a long haul, but she has worked very hard to get where she is today.We didn't think last Feb. she would even leave the hospital. Don't give up hope. :friends: Hang in there. It's still very early!!! :hug:

[Guest veggie.vampire]

My having had a massive stroke his recovery may be quicker but by a year after I had some restricted and not productive movement in my weaker arm and leg. Being right handed with that side affected I sympathise losing use of dominant side but can honestly say 6 months in it will feel natural; nearly 2 years after my stroke now even writing left handed feels natural not clumsy. Good luck.

[Amy E]

As all others have said. No two recovery timelines are the same. But I will share my timeline (to date).

 

I stroked during brain surgery in Oct of 2005. Upon waking up from the surgery I was completely paralyzed on my left side. My speech was slurred but I could swallow.

 

Today, I walk unassisted w/ a brace for my ankle. My walking is still improving and I am pretty quick just not effecient so my muscles fatigue more quickly. I am sill in therapy 1x per week.

 

I don't have functional use of my arm/hand but I contine to regain strength in my arm. I can only grasp w/ my hand, no release.

 

I have returned to work full time.

 

The progress is fast a first and then slows over time but I haven't stopped improvng in the past 1+ years. I don't intend to give up on my therapy/exercises. It is a long term committment.

 

As far as the emotions go, I think someone else said give him a year to accept his new "self" You have to allow time for him to grieve.

 

My advice is to encourage patience and determination to get better.

 

Best of luck to you both.

[Guest faithycan]

Hi Deb,

 

My husband had a stroke that affected his left side. He is still in a wheelchair and is frustrated because of it. Yesterday he clutched his milk carton in his left hand, and also pulled a bandage off with it. That doesn't seem like a lot to some people, but to him and I, it was a miracle. He does a lot of rehab therapy, he is in stand group, and he stood on his own, and moved his right foot up and down a milk crate (stairs). So it is slow slow improvements. I look at it this way, he could have been dead. Through no fault of his own, his kidney stone went unattended by his doctor, he got septic, then he got endocarditis, and a piece of a clot broke off and went to his brain. He was in the hospital at the time recovering from surgery from an abcess to his clavicle, due to the XXDLDD## kidney stone. I first posted on here because like your man, my husband was very mean towards me. He has since been an angel. I find I have no battles to pick with him anymore. He doesn't understand why I am so worried about money (his long term disability doesn't kick in until Feb). And I went back to work 3 weeks ago, I have the insurance, so I had to. He thinks he is going to work 2 weeks after he gets out of rehab (feb 13th). So our neurologist told me, I am not his doctor, boss, etc. If he thinks that all I am to say< ask your doctor, or boss, etc. or about driving, ask the registry, etc..it works great. Hange in there, it does get easier.

 

Warm regards,

Faith

[jo31]

I am 32 and now 6 months post stroke. I too had a brainstem stroke. I am now back to work part time. I still get words confused, get tired easily, and have to wear flats. A tough thing for a woman with 65 pairs of shoes! I'll tell you what I am going through and maybe it'll help you understand where he is right now. I did make great progress through inpatient rehab. I can walk without a cane or walker now, I can speak with my voice, I can eat real food (I only occassionally have trouble with my swallow).... Unfortunately where I am in my recovery is accepting what is gone from my body. My ability to go to the gym and workout for an hour (I'd fall asleep now or fall off the equipment), my ability to play volleyball, my ability to ski, my ability to walk my dog without fear that she will knock me over without realizing it, my ability to have children.... While we do have to continue to move and work on our disabilities I think we first need to accept who we currently are. It's hard to mourn your own body. It is not acceptable to most but for me it is needed. I don't see how I can continue to improve if I can't love me for who I am. So that is where I am- I am trying to love my new body and brain so I can move on and continue to get better. I do lash out at those I feel most comfortable with and have tried to explain to them. I hope they understand. I think my boyfriend does as he now avoids saying things that will push my buttons. Well meaning people ask questions and say things that will push our buttons and we smile and are polite. Unfortunately this means we are holding it in and I unfortunately take it out on the ones I am closest to. I have learned to explain to them why I am upset when venting so they know that it is not them and for the most part they will now just listen and let me go. I took me months to get to that point.

 

I know it's hard to hear it drives me crazy but it will get better. Everyone needs to deal with the adjustment in their own way including the one who had the stroke and those they are close to. A stroke is individual, it's personal it is unlike any other stroke or illness.

[Guest braz54]

Welcome Deb,

My NAme is Gail and I live in NH. My husband had a stroke during Brain Surgery Aug.30,2005.

Joe went throught the same as your hubby is right now. ICU, then step up than a reg. floor.

They did not put the skull back in until the swelling went down, so he had to go back intoteh OR and back to ICU. He finally left the hospital on Sept 23 to a rehab Hospital. while in the rehab hospital Joe was angry, he was parlized on the right side and could not speak very well.

PT worked with Joe everyday and he began to move his bad leg. They called him Super Joe because he was also determined and still is. He came home Dec.22,2005 in a wheelchair, walking very little. I ahd to help him to bed, shower him, dress him everything. Well a year later he is doing itall himself. He is using a quad cane and sometimes walks with out any device. He has worked very hard this past year, doing excerises everyday still.

 

Joe would get mad if I didn't go and visit him 1 night. I was exchausted.. He would snapa t me until 1 day at the hospital I said I am leaving to go home,I had only been there 10 minutes but he wa smad and nasty. I got up ,kissed him goodbye and left.

 

The major break through for us was I found myself coddle him to much , which was not helping him with his recovery, so I turned into a nice B----! When he asked for something I said get it yourself, becasue I knew he could. Stopped helping him to get dressed, dress yourself or don't get dress. PERIOD!

I still have to tie his shoes. He wears a small plastic brace that goes in his shoe.

 

Your man is thinking now, What can I be to her now. Not a man, Men think like that. I at one point said to Joe are you trying to push me away? He said No, but he sure was acting like it.

 

Talk to the Social Workers, stroke groups.

We have been married only 7 years, Our life will never be the same but it could of been worst.

We greive to for what we had and what our future is going to be.

 

So be patience and give encourgement, it will be along haul, but if he is determined he will see improvements.

Joe has just this week moved his toes.. He wants to drive also, so I will take him on our street for awhile adn see how he does.

Don't know ifany of this helps, but once I get typing I don't know when to stop. :party: We are 50 and 52

 

Hugs

Gail