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Thread: Interesting developments

  1. #1

    Interesting developments

    Hi All!
    Well, it's been awhile since I posted. The bf is still in the city getting his rehab. He has had some interesting times lately. It seems that the rehab staff think he may have a TBI that emulates the symptoms of a stroke, or he had a stroke when he was in the accident that resulted in his SCI. Anyway, they suspect some mental deficiencies. Like, disorganized thinking, poor short term memory, anxiety, difficulty staying on task. I agree with them for the most part. His behavior is erratic and his feelings about me seem to swing back and forth more than I'd like. It's difficult to maintain the level of comittment to him when he keeps changing the terms of his comittment to me. sigh.
    Last week was particularly interesting. We had originally used a pharmacy here in the suburbs but, at the end of last month, we changed it to the pharmacy in the hospital where he goes for rehab. Easier for him. Anyway, he takes pain meds that change in appearance from manufacturer to manufacturer. This was a bigger deal than we thought. Three of the eight different meds he takes changed in shape and color when we switched pharmacies. We have pill minders that break his meds up into breakfast, lunch, dinner, and bedtime slots but, he really takes meds about 7 times a day. We had been just kind of 'cramming' all of his afternoon meds into the 'lunch' slot. Not a good idea.
    About mid-week he was pretty confused and stressed out. When I went in to town to check on him, it looked like he had just quit taking some of his meds. He wasn't sure what pill was what. I went through his meds and noticed it was the 'changed' meds he had avoided. Pretty damn good choice for a guy who has been known to be stupid with his medicine! I asked him if he could tell the difference between two particular pills. One is round and grey. The other is round and light blue. They are the same size. He couldn't tell me for certain. I can see clearly they are different. I'm thinking there is some color-blind stuff goin on here that never really showed up before.
    So, now we will go and buy some of those 'weekly' med minders. They have seven slots. I will add stickers to change the 'days of the week' to 'time of day' and strictly segregate each dosage of pills into their own exclusive slot. I hope this reduces his confusion and stress levels. I feel like a shit for not thinking more critically about this when the meds changed in appearance!
    Anyway, just a little tale to illustrate how easily things can 'go wrong' if you are not paying attention.
    Of course, there's always more to the story but, it would be better suited to the R&S forum (NOT) or a private discussion so, don't bother askin me in this thread.
    Peace,
    SoulMate

    We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

  2. #2
    Senior Member
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    Soulmate, there is a high percentage of TBI with SCI. My brother is one, although it is not apparent to a new visitor. He had a head injury, as well as, neck injury in the accident. Neuro-psych testing can pinpoint what areas need therapy or consideration. Sometimes I don't know which is more frustrating/debilitating, the TBI or the SCI. He was kept snowed with meds, anxiety, anti-depressants,seizure and pain meds till I finally weaned him off. It helped to see what was helping and what was just making him somnulent and "spacey". Now, he is just on a half an anti-depressant/day, which helps with anxiety and frustration. Marmalady has done a lot of research on the subject, and her son has made strides too. I feel it has made a big difference in his physical therapy and confidence. He pretty much denied it the first few years but now is willing to work on the problems that TBI causes. Good idea with pill containers. And it helps, doesn't it, to know that there is a reason for mood shifts, etc. Hang in there.

  3. #3
    Hi, Soulmate - Sorry to hear of the problems. TBI is 100x worse than SCI - you can SEE the SCI - you KNOW what you're dealing with. TBI is out there in the 'twilight zone'. My son had a major grand mal seizure 2 months into rehab, which resulted in severe cognitive deficits and short term memory loss, and some of the behavior changes you're also talking about.

    My suggestion would be to find a really great neuropsychologist who deals with TBI issues; sounds like his therapists have made a good call. Get a neuropsych eval done to see where he's at cognitively; that'll give the therapists a better idea of how to aim their cognitive therapy.

    Cognitive therapy has helped my son, there's no doubt about it; he also takes 'Reminyl', which was recommended to him by an absolutely awesome neurologist who works with folks with TBI. It's helped his focus and attention a lot.

    As far as his other meds, I can share with you some of the changes the neurologist made, which also helped him immensely.

    - He had been on Dilantin for seizure prevention after the grand mal seizure. Dilantin is a hassle - whenever they're on antibiotics, you have to get Dilantin levels drawn, because the antibiotics can affect its effectiveness. The neurologist also said Dilantin makes you more sleepy and 'dopey'. He switched my son to 'Lamictal'; when that happened we saw a huge improvement in 'awakeness'.

    My son was also on 160 mg of Baclofen a day, and was still having a lot of 'tone' and spasms; he suggested we look into the baclofen pump, which we did; we again saw a huge improvement in alertness and awareness once he was weaned off the oral baclofen.

    Again, my suggestions would be to a) get a good neuropsych eval, and b) find a neurologist who specializes in TBI, and have him first go over all the meds BF is on to see if any changes could be made.

    Tough place to be in; hang in there, lilsister and I are here for you whenever you need us. ('m only sorry for you that neither one of us has the same kind of relationship problems with our family members, but feel free to PM either one of us if you just feel like talking!)

    Jackie

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

  4. #4
    lilsis and Marm
    You guys are so wonderful! Thank you, thank you, thank you. The bf is seeing a neuropsych and a speech pathologist. It sounds like they are hard a work on finding where his issues are. He's been talking about taking tests with the speech pathologist for the last few weeks. I lose some of the involvement when I can't go with him and he forgets stuff! arrrrgh. I think I will ask him to allow me to get an 'update' on the cognative sutff. I can beleive how much better I feel just hearing from you two ladies.
    Hugs,
    SoulMate

    We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

  5. #5
    Glad we could give some insight, maybe. I would think that as his 'soulmate', the therapists and cognitive peeps will probably want to include you. At least they did with us. We can give them feedback that our family members can't.

    _____________
    If we have no peace, it is because we have forgotten that we belong to each other. - Mother Teresa

  6. #6
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    soulmate, the fact that he recognizes the problem is a big step in itself. Talk with him, and if he is willing, they should have no problem including you, it can only help with reinforcement and support. I can never get over how we discover new issues and problems ( and solutions!) in this ever-unfolding set of circumstances. Jim looked up at me today as I was helping him get started on his stationary handbike and said, " I'm so sorry this whole thing has changed your life too". Oh, what a large heart he has!

  7. #7
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    Soul, could he keep a journal, either written or on tape? Especially of therapy, that would help you keep abreast of ways to help. And help with memory issues too.

  8. #8
    I really can't add anything here, since my experiences aren't in the same realm as Marm's and Lilsis's...or yours, SoulMate.

    BUT..I read this thread and just have to say:
    THIS is what this message board is all about! THIS is the CareCure I know, love and would like to see preserved.

    Carry on, ladies...
    Vicky

  9. #9
    Senior Member Obieone's Avatar
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    .... agreed Vicky! Thanks!

    Obieone

  10. #10
    Ladies,
    a question. Does your loved one ever just 'space out' and seem distracted with their own thoughts? He has been very hard to engage in conversation for most of this week. I finally called his doctor this morning and brought him in for a look see. It seems that he lost an entire day last week. He says he doesn't remember a thing. Then, with his acting so distracted, I freaked a little, and called his doc. The bf has been complaining some about a pain behind his right ear and he's been fiddeling with it since last Friday. I asked the doc to look at that and the other typical once over doctor type stuff.
    He also took some blood to do a series of tests to make sure his meds haven't gone completely wacko. sometimes I wonder if I'm not a little wacko myself!
    The bf seemed to truly want to try to get to the bottom of this. I mostly think he did it because I told him it would make me feel better. At this point, I'm just glad there is a reason that he would agree to be seen.
    I don't know jack about TBI. At least, not formally!
    peace,
    SoulMate

    We are all faced with a series of great opportunities... Brilliantly disguised as impossible situations.

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