Traumatic Brain Injury and Post Concussion Syndrome For traumatic brain injury (TBI) and post concussion syndrome (PCS).


advertisement
Reply
 
Thread Tools Display Modes
Old 03-24-2013, 05:47 PM #1
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Default Spouse of husband with TBI

Hi all. I am new to this site. I am looking for a support group for spouses of husbands/ wives who have suffered TBI's. I am feeling very alone and isolated and I'm sure there are others going through the same things I am. I would love to talk to them and help each other out. Anyone have any suggestions? I know this is a TBI and post concussion syndrome form but it was the closest I found with good 'ol goggle.
Stacyrose is offline   Reply With QuoteReply With Quote

advertisement
Old 03-24-2013, 06:41 PM #2
Brain patch's Avatar
Brain patch Brain patch is offline
Member
 
Join Date: Feb 2013
Location: Salt Lake City, Utah
Posts: 520
10 yr Member
Brain patch Brain patch is offline
Member
Brain patch's Avatar
 
Join Date: Feb 2013
Location: Salt Lake City, Utah
Posts: 520
10 yr Member
Default

Hi StacyRose,
There is a caregivers forum on this website. They would be able to sympathize with the demands of taking care of one of us who is suffering with this terrible condition. If you have any specific questions for us, we would be glad to help. Sorry you and your spouse are enduring this. Tell your spouse to come talk with us. It helps.
Brain
__________________
Brain patch.
.


Had MVA in 2006 resulting in post concussive syndrome manifested by cognitive impairment, chronic pain/ fatigue. Chronic pain of head, neck, back, left leg.
Other problems include REM sleep behavior disorder, nocturnal frontal lobe epilepsy, chronic migraines associated with nausea/vertigo, episodes of passing out, hypoglycemia, liver dysfunction (had accidental overdose of acetaminophen in 2009) had liver and kidney failure, hernia, degenerative disc disease with compression of nerve root, PTSD, and other problems associated with functioning problems from traumatic brain injury (light, sound sensitive, easily overloaded, easily distracted, cannot focus, anxiety problems etc.)
Brain patch is offline   Reply With QuoteReply With Quote
Old 03-24-2013, 09:12 PM #3
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Default

Quote:
Originally Posted by Brain patch View Post
Hi StacyRose,
There is a caregivers forum on this website. They would be able to sympathize with the demands of taking care of one of us who is suffering with this terrible condition. If you have any specific questions for us, we would be glad to help. Sorry you and your spouse are enduring this. Tell your spouse to come talk with us. It helps.
Brain
Thank you Brian I will look for it. Oh I wish he would but he is fine in his mind. Perhaps in time he will be able to see he is not and will come on here.
Stacyrose is offline   Reply With QuoteReply With Quote
Old 03-24-2013, 10:27 PM #4
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Default

Stacyrose,

Welcome to NeuroTalk. I understand your need. PCS causes a unique stress on a spousal relationship that is different than other medical conditions. We tried to start a spouses thread years ago but never achieved critical mass.

How is your hubby doing ? What are his struggles ?
What kind of care is he receiving from doctors and professionals ?
Tell us anything you can about his injury and we can help you understand his symptoms and how you can help him. When you better understand his symptoms, you will be better equipped to endure them.

What struggles are you most in need of support with ?

This is a very good group.

Check out these online resources. The YouTube video series at http://www.youtube.com/watch?v=x9Xso...ature=youtu.be
The TBI Survival Guide at www.tbiguide.com
And http://www.brainline.org/content/201...u-to-know.html

My best to you both.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Old 03-25-2013, 10:35 AM #5
Lightrail11's Avatar
Lightrail11 Lightrail11 is offline
Member
 
Join Date: Mar 2012
Location: Phoenix AZ
Posts: 531
10 yr Member
Lightrail11 Lightrail11 is offline
Member
Lightrail11's Avatar
 
Join Date: Mar 2012
Location: Phoenix AZ
Posts: 531
10 yr Member
Default

Hi and welcome. In addition to the links Mark posted, the Brain Injury Association of America posts support groups in various states, here is the link for California, hopefully there is a support group near you. You may also want to check hospitals near you that have centers that specialize in neurology, they may have support groups there as well.

Best to you both.

http://biacal.org/
__________________
What Happened: On November 29, 2010, I was walking across the street and was hit by a light rail commuter train. Result was a severe traumatic brain injury and multiple fractures (skull, pelvis, ribs). Total hospital stay was two months, one in ICU followed by an additional month in neuro-rehab. Upon hospital discharge, neurological testing revealed deficits in short term memory, executive functioning, and spatial recognition.

Today: Neuropsychological examination five months post-accident indicated a return to normal cognitive functioning, and I returned to work approximately 6 months after the accident. I am grateful to be alive and am looking forward to enjoying the rest of my life.
Lightrail11 is offline   Reply With QuoteReply With Quote
Old 03-25-2013, 04:54 PM #6
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Default

Hi Mark, Thank you for the post. I don't talk much about it so it may take me a few posts to answer these questions. I try to keep in mind talking about these things helps. Perhaps I should start with what happened, in a nutshell. I was 9 months pregnant with our first born son when my husband was in a dirt bike accident at track. He flew off his bike over a jump and it hit him in the back of the head. He was rushed to a nearby hospital. He suffered brain swelling, 6-7 bleeds, damage to his brainstem and frontal lobe. He was unresponsive for days and they were unsure if he would make it. He was in ICU for 3 weeks then 2 weeks in an in hospital rehab then 2 months at Winnways, an out-patient all day rehab facility. Given everything he is a walking miracle. His neurosurgen literally had tears in his eyes when he started opening his eyes. He does not remember any of this. I on the otherhad have flashbacks on a daily basis of everything him and I went through. I can't make them stop.

His progress: He is doing so well that he is back at work and has his drivers license back. In my eyes his struggles are short term memory, body temperature regulation difficulties,depression, interpersonal skills, being extremely deffensive and easily frustrated, lack of perpective of others. Also, when he has done too much in a day his head tremors return. He will not take any medication, hates doctors now and will not talk to a psychologist. He is not receiving any care as of a few months ago.

He rarely talks to me or anyone about his difficuties. I worry about him constantly. I know it is hard for him to verbalize his emotions. Friends tell me "that's guys for you." but he was different. I was so lucky to have a guy that could talk to me for hours about our feelings, etc. He seems depressed and I hurt because I can't just magically make him better. I feel like I have lost him but he's right here too. Like he's an arm length away and I just can't reach him. I do have a lot of patience, this is definitely one of my strongst qualities and I sure am using it now. I just wish I had my husband back. I think just having people to talk to about it who can relate to what I am and he is going through would be helpful. I get so mad when people comment how strong I WAS or how much I WENT through. They have no idea it is all still very much in the present for me.

Thank you for listening.
Stacyrose is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brain patch (03-25-2013), Mokey (03-25-2013), MommaBear (03-26-2013)
Old 03-25-2013, 04:56 PM #7
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Default

Thank you! I found a few groups close to me. I am going to call them and get some more information and see if it will work in my schedule with baby and husband and all.
Thank you!
Stacyrose is offline   Reply With QuoteReply With Quote
Old 03-25-2013, 06:32 PM #8
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Default

Stacyrose,

I understand what you are going through. My wife has gone through much of the same. It would help if he was evaluated with a NeuroPsychological Assessment. These are diagnostic tools done by NeuroPsychologists. The value is not as much for treatment as it is so HE can understand what he is like now. It will hopefully help him helpo himself.

The most likely is demonstrating a common TBI symptom called flat affect. This is where he emotions become flat, no empathy or any emotional expression. He may also have damage to the part of his brain that perceives emotion in others. Neither of these need to continue if he is willing to understand that they are a result of the injury and not just an expression of himself.

I had to learn to 'fake' emotional expression. Emotions that do not flow naturally can still be expressed by a disciplined choice. Libido can also be different. As you say, you need support to understand these issues. It will be a big help if you can find a Brain Injury Support Group that has a caregivers' subgroup. Meeting others in the same situation can at least let you know you are not alone.

If you want, I can connect you to my wife by email. She is very good at understanding these issues. She has lived with me for 33 years, 20 of them before she understood my brain injury issues. When you have access to Private Messaging or Email you can contact me privately. The link is found by a right click on my screen name. A drop down box will show and you can select PM or email.

How old is your little one now ? I have a 6 month old grand child that is finally learning to open up to others. My daughter is at work all day so she clings to her when she has her. This is a fun age as they start to interact more with her surroundings.

Why does he object to medications ? He might benefit from an anti-seizure med for his tremors. There are some that have little to no side effects. I take gabapentin to settle my tremors and body jerks.

The defensiveness can be due to mental rigidity (stubbornness caused by the injury) or a tendency for outbursts (also injury related). Sometimes, it is due to feeling overwhelmed with issues. We don't just get overwhelmed with issues, we often end up with lifetime subscriptions. It can help if you only try to discuss one issue at a time. His brain may not be able to juggle to concepts at the same time. You may have to learn this for yourself then slowly teach it to him.

Check out the Vitamins thread. It will be a big help for both of you. The injured brain has a severe need for good nutrition.

There is lots more I can say but some may be best coming from my wife.

My best to you three.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Brain patch (03-25-2013), MommaBear (03-26-2013)
Old 03-26-2013, 05:16 PM #9
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Stacyrose Stacyrose is offline
Junior Member
 
Join Date: Mar 2013
Location: Orange County, CA
Posts: 22
10 yr Member
Default

Mark,
I would love to talk to your wife once I can PM. Thank you. Listening to you it sounds like in time he will come around and perhaps be a bit more open to the fact he has some issues. Today I found a neuropsychologist in the area, very well recommended. I have a tentitive appt and a referral from his doctor in the works. Now I just have to convince him somehow.
Yes I have started limiting how much I talk to him when he comes home from work. I just let him play with the baby...he is 8 months now and is a complete crack up! We love him! I choose my battles very very wisely and if I have to I will tell him how I feel about something and move on. I get the impression he spends the next few days processing what I said because sometimes days later he will talk to me about something I had said.

well have a good rest of your day.
Stacyrose is offline   Reply With QuoteReply With Quote
Old 03-26-2013, 05:50 PM #10
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Mark in Idaho Mark in Idaho is offline
Legendary
 
Join Date: Feb 2009
Location: Somewhere near here
Posts: 11,416
15 yr Member
Default

Stacyrose,

You ought to get a white board and post it in an easy to see area. We have ours on the refrigerator. Use it to post notes. Only post the musts, not the want to's or wines. The baby wines enough so he does not need them from you. Mom's have their needs but right now it will help if you suck it up and hold back. Give him a chance to get his bearings.

You need to tell him the NeuroPsych Assessment is not about treatment. It is just to assess his condition. You can even try framing it as "I want to know more about your condition. You likely do not understand your own condition so an NPA can help us understand so we can make plans for the future/baby. Be careful to not let it sound like you are blaming him. You just want to understand.

Keep posting so you can get out of probation and have PM and email features available.
__________________
Mark in Idaho

"Be still and know that I am God" Psalm 46:10
Mark in Idaho is offline   Reply With QuoteReply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Husband has RSD....Any spouse out there feel sad? rsdwife99 Reflex Sympathetic Dystrophy (RSD and CRPS) 73 03-16-2019 09:47 AM
Help for spouse with PCS spouseofpcs Traumatic Brain Injury and Post Concussion Syndrome 17 08-18-2015 06:07 PM
husband confused of spouse behavior DeeuS New Member Introductions 5 01-22-2013 05:55 PM
Lonely Spouse odruss Traumatic Brain Injury and Post Concussion Syndrome 3 07-05-2012 02:05 PM
You think you know your spouse. Blessings2You The Stumble Inn 32 07-14-2008 09:37 AM


All times are GMT -5. The time now is 08:04 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.