•  

    Correct forum?

    Before you post, please ask yourself this question, "Is this the correct forum"?  Please read the forum description before posting. 

iam2nocnt

Husband had stroke

8 posts in this topic

So I'm new- my husband had a brain stem stroke that affected the pons portion of the brain....right now they think he has locked in syndrome .....my world has fallen apart and I am struggling every second of every day.....I have hope but I don't know if I'm just in denial or if it's real....he moved his head yesterday - very slow with extreme difficult - no one but me around- his blood pressure went up and he started to get sick - he's on a vent .....I'm literally crying so much right now I cannot see the keys.....I just needed to know there are people out there and people that have survived - my name is Teresa 

Share this post


Link to post
Share on other sites

I am terribly sorry you have to go through this. It's ok to cry and have a whirlwind of emotions but you are not alone. He is trying his best to find a stable self so in the meantime please feel free to post and get feedback. There are many people who have had a stroke and lived. i had my stroke 8 years ago.my prayers and positive energy is  being sent directly to your husband. If you need anything please email me at ksmith@strokenetwork.org.  Tuesday evenings at 8pm(est) there is a Caregiver chat group so you can chat with others who have been right where you are

Share this post


Link to post
Share on other sites

Hi Teresa, all us caregivers have been right where you are now.   There is hope.   Talk to him about things going on.   Read to him, something he is interested in.   Maybe he has locked in and maybe he doesn't, but one thing is for sure, if he does he can hear and needs desperately for some input.   Read this:

Locked-in syndrome (LIS) is a condition in which a patient is aware but cannot move or communicate verbally due to complete paralysis of nearly all voluntary muscles in the body except for vertical eye movements and blinking.

You said he moved his head - that shouldn't be possible with locked in.  But, he could just be so far down the hatch that he can't do much yet.    The brain swells after a stroke, and when the brain starts going back down in about 2weeks, it can show an improvement.   

When my husband stroked, he looked so bad, I never saw such a tramatic look of a human being.   I was thunderstruck, must have been close to being in shock myself.   But he is celebrating his 5 years of survival.   Yes, he is handicapped, but he is here with me, and we have a good life and laugh together, stay up late, sleep late, nap whenever we feel like it.  You still have reason to hope for a future life together.   Stay with us, we can help you understand, deal with, and give tips.   You are not alone  {{{{HUGS}}}}

If you'd seen him after stroking, you'd never have thought this happy, content guy below could still be in the future.

DSC02945 (800x531).jpg

Share this post


Link to post
Share on other sites
21 hours ago, iam2nocnt said:

So I'm new- my husband had a brain stem stroke that affected the pons portion of the brain....right now they think he has locked in syndrome .....my world has fallen apart and I am struggling every second of every day.....I have hope but I don't know if I'm just in denial or if it's real....he moved his head yesterday - very slow with extreme difficult - no one but me around- his blood pressure went up and he started to get sick - he's on a vent .....I'm literally crying so much right now I cannot see the keys.....I just needed to know there are people out there and people that have survived - my name is Teresa 

I had a brain stem stroke in the pons area.  I have lots of information about this type of stroke on my website at http://www.stevemallory.org/, look in the Brain Stem section.  The most important thing to do with him right now is have a strategy for communication.  You might want to read my blog article entitled, Techniques in Communication.  I might be a stroke survivor but I remember watching my wife look destroyed!  Things almost always improve with time.  The problem is that recovery is painfully slow.  Let me know if you have questions. 

Share this post


Link to post
Share on other sites

Hi Teresa, I hope you are feeling welcomed here. Thie is a great place for support and information. Browse through the caretaker boards and feel free to ask and speak your concerns, fears, and anything else that you may be feeling. There are many survivors that I have met on here who have survived many types of brainstem strokes and I see them thriving so hope is there...believe. I know this moment must be so hard for you and I must imagine feel helpless at times. Steve can direct you to some of the most helpful areas of the site and hopefully you can learn about things that help. I want to welcome you the site and let you know that there is support here. Hugs and wishing your husband all the best on recovery. 

Share this post


Link to post
Share on other sites

Welcome Teresa. This is a great site, lots of information, lots of caring people.  Some of the caregivers will have had something similar to cope with and will reply in time.  My husband had multiple strokes over a twelve year period and died in 2012.  I am the Blog Moderator so would encourage you to start a blog as an online journal  and to pop into chat when you can to connect with other caregivers and/or stroke survivors.

 We caregivers have all have that experience of being lost and struggling with what being a caregiver and having a stroke affected spouse means.  Just do your best to go on from day to day, rest when you can, and just stop and take some deep breaths when life gets too much.  Things will just take a while to get better but if you stay strong you will manage to cope.

Share this post


Link to post
Share on other sites

I cannot thank you all enough for your input and positive words!  There is so much negativity in this hospital and in his family it is like taking a deep breathe of fresh air reading all your words ? 

Share this post


Link to post
Share on other sites

Hi Theresa, so sorry to hear about your circumstances; certainly a very emotional time for you.  You'll receive such great support here.

My strokes (which both required brain surgeries) happened a long time ago when I was 34 years old.  I was in a coma, on life support, with only a slim chance of survival.  But as you can see, I survived!

You and your husband will be in my thoughts and prayers, Hugs (and follow Sue's advice re getting some rest!)

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now