6 replies to this topic

[Dbapwl]

I have alot of questions but do not know where to post them all.

I am new to this site. I am a mom of a 20 year old daughter
that was involved in a MVA 6 months ago and is now a C6 incomplete,
she doesnt want to try and do anything
for herself, unless I make her mad. She does feed herself, and she does
go to a friends house, but comes back in bad shape where it takes me
a few days to a week to get her back to feeling better,

IF I tell her no she cant go then she says Im treating her like a child,
So I let her go so she can see what it does to her, but it is only causing more
work and stress on me. Because I am the only one that will take care of her.

She has dysreflexia all the time, sweating and freezing at the same time,
she has silence seizures, Thats what we think they are.
shes on seizure meds, cause she has had a few grand mal seizures when she was
in the hospital.

I have so much more that I need help on but do not know where to post them.
She is wearing me out, and Im afraid one day I will not be able to care for her
then what will happen, I have told her this. But nothing changes.

IF someone can help please do.

[Trinity]

Do you know what's causing the dysreflexia? It's an important sign that really can't be ignored, that along with the seizure activity sounds like she has on going health issues that need sorting out. If her general health is improved then you may be able to help her improve her mental health.


Has she ever engaged in any sort of counselling service? For that matter have you? Is there any chance of getting in help to give you both some respite?

You are both still very new to this all, it can take a considerable amount of time to accept an injury and to find your confidence and your place back in society. Is she still in education or has she got any hobbies or interests she can pursue? Things like this can give her a sense of identity and worth as well as some much needed independence. Does her rehab centre offer any peer support?

Sorry it's all question question question from me!

[TJT]

My 25 year old son is 15 months in to his C4 injury and I am using his computer (and his permission to post). I KNOW WHERE YOU ARE AT, but trust me it gets better and there is a lot of experience out there to help.It feels like we are 5 years down the road, not 15 months. As a parent I know you can never be happy again until you child is but it WILL happen. Burning your self out is a threat but I have learned to follow a very problem/solution focused pace that is sustainable because he needs me in the longer run.We now have a great relationship and life is much better (but in a very different way).I often had to remind everyone "here is what I can do to help you with your problem".

[Dbapwl]

Trinity, on 06 February 2012 - 07:05 PM, said:

Do you know what's causing the dysreflexia? It's an important sign that really can't be ignored, that along with the seizure activity sounds like she has on going health issues that need sorting out. If her general health is improved then you may be able to help her improve her mental health.


Has she ever engaged in any sort of counselling service? For that matter have you? Is there any chance of getting in help to give you both some respite?

You are both still very new to this all, it can take a considerable amount of time to accept an injury and to find your confidence and your place back in society. Is she still in education or has she got any hobbies or interests she can pursue? Things like this can give her a sense of identity and worth as well as some much needed independence. Does her rehab centre offer any peer support?

Sorry it's all question question question from me!

We do not know what's causing the dysreflexia. I check everything. And even go to the dr for possible bladder infection. She still has them. I do not know if maybe its caused from pain in her lower back from the Mva or what. She's on pain meds. So I'm just guessing. It's only been 6 months. We do not go to counseling. Her Dr suggested that she go. But she didn't want to. I told her she should go to help her cope with loosing friends in the accident and with her being paralyzed.

She was in the Army and was going to be shipped out in a few weeks then she had the accident. So she's dealing with a lot right now. And I do not know how to get her to see a counselor.

TJT, on 06 February 2012 - 08:31 PM, said:

My 25 year old son is 15 months in to his C4 injury and I am using his computer (and his permission to post). I KNOW WHERE YOU ARE AT, but trust me it gets better and there is a lot of experience out there to help.It feels like we are 5 years down the road, not 15 months. As a parent I know you can never be happy again until you child is but it WILL happen. Burning your self out is a threat but I have learned to follow a very problem/solution focused pace that is sustainable because he needs me in the longer run.We now have a great relationship and life is much better (but in a very different way).I often had to remind everyone "here is what I can do to help you with your problem".

I'm praying it gets better. Not for me but for my daughter. I love her so much and hate to see her this way.

[julibugs]

Maybe you could point her in the direction of this site - maybe she will find an outlet for her frustrations. I hope that you have someone you can talk to, you need support too.


Julia

[Tetracyclone]

Since she was in the military you might benefit from finding a peer in that network who would help. She needs a no-nonsense superior officer type lecture or 3.

You could also try video feedback. Instead of you having to remind her how awful things are after a trip to a friends, get before and after on video and just play it for her when she announces one of these trips. If it is her actions cause the problems, she will learn faster from feedback that does not come through you.

If it is just the stress of getting out that affects her, her friends could come over, and the same thing would happen when she goes to the doctor. Also this will get better with time.

Keep in touch.

[Dbapwl]

Tetracyclone, on 08 February 2012 - 04:53 PM, said:

Since she was in the military you might benefit from finding a peer in that network who would help. She needs a no-nonsense superior officer type lecture or 3.

You could also try video feedback. Instead of you having to remind her how awful things are after a trip to a friends, get before and after on video and just play it for her when she announces one of these trips. If it is her actions cause the problems, she will learn faster from feedback that does not come through you.

If it is just the stress of getting out that affects her, her friends could come over, and the same thing would happen when she goes to the doctor. Also this will get better with time.

Keep in touch.

Thank you. I will do that. I already Video some of her episodes she has. Just to show the Dr when we go in. It's easier to show them than explain what she does.