6 replies to this topic

[Trishtack]

Hi - I didn't get much response to my concerns about our recent tri to Mayo so I am hoping to go at this a different way. Today when I was reviewing the physical therapy order, I saw that the doctor had stated DH had L1 Incomplete Paraplegia. We had not been given a level before so I know nothing in regards to this.

Also, I have been reading a lot online and it seems that the best hope for response and recovery comes within the first 6 month or so and the odds are better with good physical therapy. DH refused to go to therapy after Dec and really only made it 3 or so times after he left the rehab hosp. Does this translate to him damaging his chances at regaining some of his function in his right leg?

I want us to go back to Mayo for two months for him to get intensive physical therapy at a place that I trust. However, I know he will not agree up front and may not agree at all. Does anyone think that there would be a distinct advantage in going to Mayo over the rehab hosp in Indianapolis?

What would you do as a spouse if you where given even the tiniest glimmer of hope that your DH could possibly walk again?

I just am so uneducated in this and I am used to having the ability to research and be prepared whenever facing any obstacle. Knowledge is always my power and I just don't have any.

Any help or thoughts would be appreciated.

[wheelywendy]

hi
i cant really help you with either of the rehab places you meantioned as i'm in uk and know nothing about them, i'm an L1 complete para i can however say that rehab can only really work if the person doing it is willing to put in the effort, if dh has no incentive to move on or try to improve then you really have your work cut out to try and motivate him, however dont ever give up, try to help him by encouraging him but dont go over the top of he''ll back up even more,
can you get dh to start posting himself on here, he may even open up a little when he starts to realise that we're a friendly bunch and that most of us have gone through the same as he is at present, some still are, there are others on here L1's and above even that are walking or starting to walk so there can be hope, unfortunately i'm not one of them, but there are plenty out there that do.
as well as the physical injury try to see the effect on dh as a whole, the emotions especially in the first couple of years really go through the mill, there are some highs but loads of lows, when the emotions and realisation of what you've lost kick in its really hard to find any motivation to do anything, even if common sense tells you to get out there and get on and fight for what you can regain, the motivation just doesnt kick in, try to be positive but dont appear over optamistic, try to just be there for him your love and understanding will eventually seep through, times are tough for you both at the moment and at times you will feel like your hitting your head against a brick wall, but time does heal and the emotions and coping ability do improve, although we all get low times well i know i sure do even 11 yrs on. praise and efforts no matter how small, but dont go over top and certainly dont treat him like a child dont be afraid to tell him hes being stubborn , a friend of mine in my early days gave me a real talking to told me if i wanted to sit on my backside and be waited on hand and foot then get on with it, but she wasnt gonna be the one to do it when i was perfectly capable of doing somethings for myself!! then she left the room and i sobbed my heart out but her words kept echoing around my head and eventually i started to think sod you i'll show you i'm not a lazy arse and my motivation (or maybe sheer bloody mindedness started to kick in!) her words had far more impact on my recovery than all the miolly coddling form others, even if i did hate her for a while infact i never spoke to her the next few times she visited so she just sat by my bed and read a book, now i cant thank her enough as i live a very full and active life even if the legs dont work. i guess the answer is knowing the person and knowing how far to push and how, but more importantly just being there for them, (even if at the time they dont want you there!)

i hope this helps a little, i tend to know what i mean but find it hard to put in words but hopefully others on here will try to help you to, hang in there and be there for dh
wendy

[greybeard]

Trishtack, on Jun 26 2009, 05:50 AM, said:

I want us to go back to Mayo for two months for him to get intensive physical therapy at a place that I trust. However, I know he will not agree up front and may not agree at all.

It's possible the real issue here is not about what you trust - or wish for, but rather what he feels about things.

I agree with Wheelywendy. Get him on here even if at first it is only as a lurker. He'll soon see how supportive the group is.

Give the guy some space to come to terms with his situation in his own way. Don't push too hard, but don't give up on him completely.

[Trishtack]

Thanks so much both of your for responding. I gave him the info on the site several months ago. I am not sure if he has logged on. I asked a couple of times and he said he checked out some sites but didn't say which. He watches a lot of you tube videos which have motivated him to try different things. I'll make sure I give him the site again this weekend.

We have dealt with real lows since Sept 08 and he finally turned a corner a few weeks ago. And that happened when I stepped back and just did whatever he wanted without pointing out he could do it etc. I was okay with giving in and just doing to make life easier for us all and to give him more time to adjust.

However, he has refused therapy since Nov and has had some movement since Nov in his right leg. That is 8 months of therapy gone. He could have possibly been standing by now. I just don't know how to sit back and wait for him to decide he'll go again when he keeps saying maybe in another 6 months. I truly understand that it is his body and his emotions and I've gone above and beyond in every way to do the best for him as he defines it. But I just can't sit back and do nothing when he has a chance to walk again. It is his, mine and our daughter's future at stake. I feel he owes it to the three of us to just give it a month. That is 12 hours out of a month.

I so hope I don't sound harsh. I swear I am not. I just want some hope.

[wheelywendy]

Trishtack, on Jun 26 2009, 08:52 PM, said:

Thanks so much both of your for responding. I gave him the info on the site several months ago. I am not sure if he has logged on. I asked a couple of times and he said he checked out some sites but didn't say which. He watches a lot of you tube videos which have motivated him to try different things. I'll make sure I give him the site again this weekend.

We have dealt with real lows since Sept 08 and he finally turned a corner a few weeks ago. And that happened when I stepped back and just did whatever he wanted without pointing out he could do it etc. I was okay with giving in and just doing to make life easier for us all and to give him more time to adjust.

However, he has refused therapy since Nov and has had some movement since Nov in his right leg. That is 8 months of therapy gone. He could have possibly been standing by now. I just don't know how to sit back and wait for him to decide he'll go again when he keeps saying maybe in another 6 months. I truly understand that it is his body and his emotions and I've gone above and beyond in every way to do the best for him as he defines it. But I just can't sit back and do nothing when he has a chance to walk again. It is his, mine and our daughter's future at stake. I feel he owes it to the three of us to just give it a month. That is 12 hours out of a month.

I so hope I don't sound harsh. I swear I am not. I just want some hope.

it does sound like you have been very patient, its very difficult to advise on individual situations, i've spoken to the friends and family that stuck by me and asked their opinion, they really just say stick with him, dont push to hard but dont do things he can do himself leave him to do them (but do keep in mind that something he managed one day might just be too much the next day as i'm sure you realise some days are better than others, how old is your daughter is she of an age when maybe she could encourage sometimes coming in from a diffrent angle ie getting his daughter to encourage him ofr express he wish for him to try might help, but only you will know if that is right for him and his daughter, just a thought. but stick in there it sounds like you've been a real rock even if he doesnt realise it yet, try to also have you time too if possible though.

[dom]

i am L1 incomplete but i am not sure what you are expecting/hoping

Trishtack, on Jun 26 2009, 08:52 PM, said:

Thanks so much both of your for responding. I gave him the info on the site several months ago. I am not sure if he has logged on. I asked a couple of times and he said he checked out some sites but didn't say which. He watches a lot of you tube videos which have motivated him to try different things. I'll make sure I give him the site again this weekend.

We have dealt with real lows since Sept 08 and he finally turned a corner a few weeks ago. And that happened when I stepped back and just did whatever he wanted without pointing out he could do it etc. I was okay with giving in and just doing to make life easier for us all and to give him more time to adjust.

However, he has refused therapy since Nov and has had some movement since Nov in his right leg. That is 8 months of therapy gone. He could have possibly been standing by now. I just don't know how to sit back and wait for him to decide he'll go again when he keeps saying maybe in another 6 months. I truly understand that it is his body and his emotions and I've gone above and beyond in every way to do the best for him as he defines it. But I just can't sit back and do nothing when he has a chance to walk again. It is his, mine and our daughter's future at stake. I feel he owes it to the three of us to just give it a month. That is 12 hours out of a month.

I so hope I don't sound harsh. I swear I am not. I just want some hope.

[RaginTurtleHead]

L-1 incomplete here also.happy to answer any questions but it sounds like he just lacks motivation.... eventually it will come around.