12 replies to this topic

[dawnyvo]

Hi

First let me say that I have never posted to a forum before, so if I do something wrong please be patient and I will try to learn quickly. My fiance was paralyzed (C6C7) at the beginning of this month. Right now he is still in the hospital because following surgery he developed an infection.

This is all new to me and his family. He has a strong support system so far and he is in very good spirits.

We were planning on being married in Sept., and hopefully that will still happen. I am trying to learn what I can, but right now I don't even know what questions to ask.

Looking at websites led me to this forum and after reading some of the posts, I thought that maybe I could learn from everyone here.

So, this was a long way to introduce myself. My name is Dawn. Any advice about the beginning of this new life will be appreciated.
Thank you

[wheeels]

Welcome,
The best advice I can give is be his Fiance \ wife and not his caregiver make sure there is a clear distiction between the two, and make sure to take care of yourself also.

[kdenon01]

Hi! And welcome to the forums!

My husband is c5-c6, and we were together before his accident. So I kinda know what you are going through. The only thing I can suggest is to stay strong. Don't let the hospital drive you crazy. People are going to have their opinions, so learn to brush it off. You guys can totally make it through this.

And ask questions on here. No matter how stupid they may seem...I wish I would have found this site right after hubby's accident. I had sooo many unanswered questions, and too much negativity in my life.

-Kristen

Edited by kdenon01, 25 June 2008 - 09:07 PM.

[Trinity]

Welcome to the forum!

It's never too soon to start making plans for when he gets home, the sooner you can get things in place the better. The forum is not short on advice, hints and tips, get stuck in and ask away! Where in the world are you? If you add it to your profile it helps with answers, things vary so much from country to counry!

Trinity X

[dawnyvo]

wheeels, on Jun 25 2008, 12:42 PM, said:

Welcome,
The best advice I can give is be his Fiance \ wife and not his caregiver make sure there is a clear distiction between the two, and make sure to take care of yourself also.

Hi
Thank you for the advice, I'm not really sure how to make the distinction right now. Since he has been in the hospital either I, his mother or his sister have been with him 24/7. I work full time so this has been hard, but I can't help thinking how hard it is for him also. I want to do everything I can for him, but after spending a couple of hours on this site I realize that will be a mistake. The problem is I just don't know where to begin. I'm not even completely sure of his diagnosis at this point.

[kimgilaby]

Hi Dawn I do't think you could have found a better place to get your questions answered then here my husband was injured in Nov )& and I still run back here with new questions almost daily lol. Good Luck and please LISTEN when you are told to be his fiance/soon to be wife. Let the nursing and aides be his caretakers. You are going to want to do it all and take it from me thats a relly hard thing to not do. I have to stop myself all the time from doing stuff for my husband because he needs to figure it out on his own as well and why do I have aids coming in if I don't give them stuff to do. This is totally easier said then done lol. Good luck to you both

[dawnyvo]

kdenon01, on Jun 25 2008, 02:06 PM, said:

Hi! And welcome to the forums!

My husband is c5-c6, and we were together before his accident. So I kinda know what you are going through. The only thing I can suggest is to stay strong. Don't let the hospital drive you crazy. People are going to have their opinions, so learn to brush it off. You guys can totally make it through this.

And ask questions on here. No matter how stupid they may seem...I wish I would have found this site right after hubby's accident. I had sooo many unanswered questions, and too much negativity in my life.

-Kristen

Hi,

I too am glad that I've found this site. I don't know what to expect or what I need to learn. The only thing that I do know for sure is that I love him very much and this accident hasn't changed that. I want to be strong for him and myself, but again I don't even know what to ask.

[dawnyvo]

trinity, on Jun 25 2008, 02:55 PM, said:

Welcome to the forum!

It's never too soon to start making plans for when he gets home, the sooner you can get things in place the better. The forum is not short on advice, hints and tips, get stuck in and ask away! Where in the world are you? If you add it to your profile it helps with answers, things vary so much from country to counry!

Trinity X

Hi

I'm in Orange County. California. I have been wondering how to make things more accessible for him, but again I'm not entirely sure what his mobility is right now other than he can't walk and has no finger movements. He can move his arms and wrists though, so I need to know what he will be able to do.

[dawnyvo]

kimgilaby, on Jun 25 2008, 03:01 PM, said:

Hi Dawn I do't think you could have found a better place to get your questions answered then here my husband was injured in Nov )& and I still run back here with new questions almost daily lol. Good Luck and please LISTEN when you are told to be his fiance/soon to be wife. Let the nursing and aides be his caretakers. You are going to want to do it all and take it from me thats a relly hard thing to not do. I have to stop myself all the time from doing stuff for my husband because he needs to figure it out on his own as well and why do I have aids coming in if I don't give them stuff to do. This is totally easier said then done lol. Good luck to you both

Hi

I do think that it will be very hard not to do things myself. Even right now while he is in the hospital, his mom, sister and I are always there for him 24/7 so that he won't be alone. I really appreciate the advice I've recieved so far and will keep coming back. Thank you

[JT80]

sound advice above. it will be to his benefit to struggle at first but find his way of doing things. i.e encourage him to work as hard as possible in rehab. personally, i found finding a really good physio was key - experienced and tough. a good physio that pushes you to your very limit is far more useful than any doc telling you 'from the book' what you will/won't be able to do. there are lots of average physios but try to search out a good one and its never too soon.
with no other complications a c6/7 would be more or less be able to look after themselves in due course - quite a few in here i think. maybe some help with more dextrous things.
don't become his carer i.m.o - concentrate on your relationship. i have been with my g/friend prior to and since accident and don't want her doing any of my care issues, except helping me getting in the car or up a step into a pub etc. finding a good carer can be tricky but find one who fits in with both or your lifestyles - does the job then gets out of the way when not needed. then its just you and your bloke same as before, except the non walking etc.
try and stay positive, challenge yourselves, prove any doubters wrong and you'll be amazed where you'll be in 2 years.
good luck.

[dawnyvo]

JT80, on Jun 26 2008, 09:17 AM, said:

sound advice above. it will be to his benefit to struggle at first but find his way of doing things. i.e encourage him to work as hard as possible in rehab. personally, i found finding a really good physio was key - experienced and tough. a good physio that pushes you to your very limit is far more useful than any doc telling you 'from the book' what you will/won't be able to do. there are lots of average physios but try to search out a good one and its never too soon.
with no other complications a c6/7 would be more or less be able to look after themselves in due course - quite a few in here i think. maybe some help with more dextrous things.
don't become his carer i.m.o - concentrate on your relationship. i have been with my g/friend prior to and since accident and don't want her doing any of my care issues, except helping me getting in the car or up a step into a pub etc. finding a good carer can be tricky but find one who fits in with both or your lifestyles - does the job then gets out of the way when not needed. then its just you and your bloke same as before, except the non walking etc.
try and stay positive, challenge yourselves, prove any doubters wrong and you'll be amazed where you'll be in 2 years.
good luck.

Hi
Thank you, hearing and reading about some positive things helps me stay optimistic. This is a frightening time for us, but as we learn more, I hope we will cope better.
Thanks again for your support.

[qbounce]

Hi Dawnyvo,

I live in Orange, Ca., neighbor! If you're in need of ANY local help, I'm sure I can give you some info.

Just know that he WILL build strength in his arms/ hands. Lower level quads still have the possibility of hand function, to a degree.
In time, he could be mostly independant. It will take alot of patience and diligence, though.

If you wish, PM me with questions.

[ParaforGod]

Hi and welcome. I know you want to do everything for him but don't. Let him do all that he can for himself. I remember one time while at rehab I was trying to put on a sprots bra and was having trouble reaching in the back, PT and OT was in my room when my daughter just reached out and popped my bra in place. They got all over her, they ask what are you doing when she replyed helping because she can't reach. They came back with what is she going to do when your not around and its true. From that time own she let me do it myself along with other things.
Let him do all he can and help where he just can't do it. Just love him and support him.