[justafriend]

I am sorry of this ends up being long but I need some help I guess. Almost a year ago my best friend of 25 years suffered a spinal cord stroke. She went from perfectly healthy to being a paraplegic from about the belly button down. At the time she lived on her own but while in rehab I convinced her to move in with me at least for a little while. I also lived alone and have a nice size house. I had a few things done to make it accessable, etc. Everythng was great, it was working out ideal for us so we decided to make it permanant. We always had company and split the bills evently/etc. There is no mortgage or anything and she went back to work so we were able save a great deal etc.

So then yesterday morning happened. She woke up with her arms numb and her hands paralyzed. At first I thought she was just weak because she was just getting over a UTI and wasn't eating as much etc when she wasn't feeling well but we called the Dr and got her to the hospital. They gave her an injection directly into her spinal cord fluid in case of another stroke. She had a load of tests, her enzyme level was very high and they determined it was indeed probably another stroke. We have no idea why it is happening, from what I understand spinal cord strokes are not common and to have two in a year is really odd.

As of right now she has numbness in her arms but can somewhat feel them and she does have strength in them but they are very weak. Her hands are completely paralyzed, except for one thumb that she can move but not feel. Tomorrow she is going to the rehab floor for about a week. They are hopeful that they got the meds into her on time and hope she will recover some if not all the function back in her hands/arms. However with the past stroke and not getting any recovery they just don't know. She is terrified because despite the wheelchair she has been extremely independant and she never let it get her down. We don't know what to expect. My familyis telling me I should not bring her back here, its not fair to me. But I can't turn my back, this is now her home too. So my question is will they go over what I need to get in this house to help her? I know they said she will be entitled to health care aids coming in/etc. For those of you that are quads, if you have strength in your arms but no use of your hands can you transfer on your own? Or are we going to need to get a lift?

Sorry for rambling on, I am just overwhelmed I guess.

[guido]

justafriend, on Oct 19 2009, 02:21 PM, said:

She is terrified because despite the wheelchair she has been extremely independant and she never let it get her down. We don't know what to expect. My familyis telling me I should not bring her back here, its not fair to me. But I can't turn my back, this is now her home too. So my question is will they go over what I need to get in this house to help her? I know they said she will be entitled to health care aids coming in/etc. For those of you that are quads, if you have strength in your arms but no use of your hands can you transfer on your own? Or are we going to need to get a lift?

Sorry for rambling on, I am just overwhelmed I guess.

Hi Justafriend

Just wanted to say, that you have clearly been an excellent friend already. Whilst I cannot say what is going to happen and not sure which country you are in (so which health care system you are under) but it sounds like you will have to do a while of wait and see. While your friend is in hospital, there is no knowing for sure what the outcome of this latest event will be. If it is a blip and things go back to normal, then life can continue as before, otherwise you'll need to face decisions and requirements as they happen.

Maybe you need to have a think through your own needs so that you can find possible answers to some of the what ifs. What if it gets worse? Can you realistically deal with making alterations in your home, etc...

The overwhelming part you mention is so NORMAL. We've all been through this (as have our nearest and dearest). I suggest you try to slow it down a bit to catch your breath. Make a point of taking one day at a time, and have your friend do the same. This way you can adjust to things as they happen rather than suffering anxiety over what might happen. It'll help you both stay more upbeat which will help her recouperation. The days will add up on their own and things will soon become clearer. With clarity will come practical questions which you can then go off and research, such as what adaptions might be needed, who will pay for all this, etc...

As a friend, follow your instinct and be honest about what you can and cannot do.

Best wishes

Guido

[codakitty]

justafriend, on Oct 19 2009, 03:21 PM, said:

I am sorry of this ends up being long but I need some help I guess. Almost a year ago my best friend of 25 years suffered a spinal cord stroke. She went from perfectly healthy to being a paraplegic from about the belly button down. At the time she lived on her own but while in rehab I convinced her to move in with me at least for a little while. I also lived alone and have a nice size house. I had a few things done to make it accessable, etc. Everythng was great, it was working out ideal for us so we decided to make it permanant. We always had company and split the bills evently/etc. There is no mortgage or anything and she went back to work so we were able save a great deal etc.

So then yesterday morning happened. She woke up with her arms numb and her hands paralyzed. At first I thought she was just weak because she was just getting over a UTI and wasn't eating as much etc when she wasn't feeling well but we called the Dr and got her to the hospital. They gave her an injection directly into her spinal cord fluid in case of another stroke. She had a load of tests, her enzyme level was very high and they determined it was indeed probably another stroke. We have no idea why it is happening, from what I understand spinal cord strokes are not common and to have two in a year is really odd.

As of right now she has numbness in her arms but can somewhat feel them and she does have strength in them but they are very weak. Her hands are completely paralyzed, except for one thumb that she can move but not feel. Tomorrow she is going to the rehab floor for about a week. They are hopeful that they got the meds into her on time and hope she will recover some if not all the function back in her hands/arms. However with the past stroke and not getting any recovery they just don't know. She is terrified because despite the wheelchair she has been extremely independant and she never let it get her down. We don't know what to expect. My familyis telling me I should not bring her back here, its not fair to me. But I can't turn my back, this is now her home too. So my question is will they go over what I need to get in this house to help her? I know they said she will be entitled to health care aids coming in/etc. For those of you that are quads, if you have strength in your arms but no use of your hands can you transfer on your own? Or are we going to need to get a lift?

Sorry for rambling on, I am just overwhelmed I guess.

you should be overwhelmed, that's absolutely horrible. (for both of you). i'm not being negative, it's just that i've been a T-6 for 29 years and my worst nightmare was always losing my independence. i worked and drove for 23 of those and i have lived completely alone since my husband died in 1992.

but on the bright side, maybe it isn't permanent. i did know a woman who had MS who divorced her husband after 20 years and she lived alone for several years even though her condition progressed from a pseudo-para to being functionally quad. she didn't really have too many problems because she could get in and out of bed and toilet herself but once the hands go and those two things are not possible anymore, the situation changes a lot and caregivers are usually necessary. i still feel really bad for the two of you and i'm not one to pity people or just say things like that to be "nice". i urge you not to listen to your family who might not be supportive. you have been an excellent friend. i never had any friends like that and a lot of people don't. of course it will be more stressful for awhile and if you decide you can't take that on, i'm sure she would understand but it isn't the end of the world either. most of the "challenges" (yes, i taught in a middle school for years. i learned not to call huge disasters what they were--they became "challenges." haha) can be dealt with, seriously.

i hope she recovers or at least doesn't have any more strokes. there is so much of a history of stroke in my family that no one ever lived long enough to get cancer or other massive illnesses. it scared me so much that i have done everything possible for me not have a stroke but no one is immune. good luck.

[justafriend]

Thank you for your responses. A few things have happened. One is that they know what has caused the strokes and why they didn't figure it out after the first one is beyond me. She has at least 3AVMs. They are going to do a procedure tomorrow morning to "plug" them and hopefully prevent any more strokes.

Also she has remained in contact with a pt she became very close with at Kessler where she went for her first round of in patient pt. She is coming out here to look at the house and make recommendations and also to show me exercises/techniques to help her. I am not listening to those close to me that are telling me this is too much to take on. I know its the right thing to do and we will deal with those "challenges". She has an amazingly good spirit about her. Now that the first few days passed and she has calmed a bit she is focused and ready to start the work. Also from test results they said the initial damage to her legs they believe is permanant and they aren't sure about this last one. But they have assured us things arent as bad as it first seemed. She was already eating on her own today although slow and she got tired quick.
Thanks again everyone

[qbounce]

Realistically, I'm sure you know it IS going to be alot of hard work. Because they caught it quickly doesn't mean that permanent damage wasn't done, however.

I'm glad they're taking steps to solve your issue, and only wish her the most speedy recovery. But, for both of your sake'sI hope you'll have a home health nurse come in and help her in intervals so you can take some time out also. It is a daunting task to attempt caring for anyone who was once independant. My heart goes out to you both.

[justafriend]

Oh yes I know that this is going to be a HUGE adjustment. And I know it is not going to be easy. But then again what in life is easy right? No it has started to sink in how much has really changed. We are also very aware that she may not get any function in her hands back. She really realized yesterday how weak her arms are when she was taken for therapy. She can't really support herself with them to sit up or anything at least not yet. The Dr told her mom and I on the side that the reality is she has probably less then 10 % chance of getting the use of her hands back. He said he focus right now in therapy needs to be to build up the strength in those arms to get her able to transfer and things even if some assistance is needed. The girl is absolutely terified of the lifts and really doesnt want to come home having to use one. Hmmmmm maybe she just doesnt trust me with it!
When her legs were affected so drastically with the first stroke she really stayed focused and did realy well. She hardly got down and realized being in the chair was not the end of the world. Now she is having a really hard time with this. Which I cannot blame her. We have had talks every night and they usually include many tears. She is just so afraid of what she can't do. Yesterday for the first time they gave her a cuff type thing to put her fork in and try to feed herself. She was so frustrated, she tried but it was so hard for her. And just from the couple of buted she managed to get on she was so tired. But I helped her with the rest and told her just to try a little each meal.
Thank you for listening everyone. Its not easy to watch someone you love struggling to do the things most of us take for granted.