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  • #31
    Some research indicates that cognitive changes - not necessarily, or even usually, frank psychological disturbances - occur in about half of MS patients. The number might be as high as 80% in people with very severe forms of MS. Typically, this will manifest as memory loss, slowed thought processing and depression.

    Cognitive changes are measured along a very broad spectrum, ranging from momentary memory glitches to serious personality or mood disorders. While between 50-80% of MS patients might experience some degree of cognitive change, it is not the case that 50% of MS patients will manifest the most severe forms (i.e., "mental illness"). There's a pretty good discussion of this issue here.

    It should also be borne in mind that MS and psychological dysfunction are not necessarily causally related, even when they occur together. This would have to be assessed on a case-by-case basis, taking into account the patient's clinical history, lesion status and medications.
    MS with cervical and thoracic cord lesions

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    • #32
      NL - my post to you sounded so harsh, I didn't intend it that way. I will def look into it. As that makes sense but I really have never heard that. But then again, theres alot to this disease that leaves alot of unknowns. I do belong to 4 other ms forums but have found more info and friends here.

      Jeane - I really can't thank you enough. Yes my daughter is happy, and I am very proud of her. She ended up graduating hs mid year and is now in her 2nd year of college as some sort of lab chemist techno nut something or other, its way above my head. Any our granddaughter has been a bundle of joy and wonderful medicine for all of us. She has brought us closer in a whole new way. Wouldn't trade that little stinker for nothing. My daughter also used her ss money to buy a foreclosure home for less than 1/2 its appraised value. Not to many 18yr olds could do that. She is very smart. My youngest on the other hand is 17 soon to be 18 and I think I will end up having to kick her out sometime before she is 30 , she is so content on staying home and being around here. She works part time at two jobs and is also an inspiring photographer. She is super good.

      In all honesty things have gone pretty good around here today. We have all been civil and have tried to get a few good talks in about how we are both feeling and how we both need help. I hope its sinking in. When it starts to get to the pointing the finger stage I just get up and go in the other room and shut my mouth. Then I will try again later. I am not backing down this time, I have gotten to this point before but let it go and just kept doing the one foot in front of the other routine, but then I sink back to this spot, this time I will get him to listen, and the kids, and hopefully some outside help from somewhere somehow. Then we will worry about the money, the kids have suggested having some sort of fundraiser, but its been 5 1/2 years since he got sick, I don't know what people would think about it now so long afterwards and also because the kids would be hosting it, don't know how that would look either. Sad part is there is over $20K on charge cards which in large part is his ms meds that non of the MS organizations or drs. told us we could get some assistance for so for the first 4 years I was charging over $800 a month in meds when now I get them for $100 a month. No one told me till to long afterwards that the $6000 I charged for the hotel room while he was in the hospital could be deducted from taxes or at the least turned into insurance, now its too late, and I still have to pay. Again, thanks for listening and all the wonderful ideas.

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      • #33
        Originally posted by MSWIFE1 View Post
        NL - my post to you sounded so harsh, I didn't intend it that way. I will def look into it. As that makes sense but I really have never heard that. But then again, theres alot to this disease that leaves alot of unknowns. I do belong to 4 other ms forums but have found more info and friends here.

        Jeane - I really can't thank you enough. Yes my daughter is happy, and I am very proud of her. She ended up graduating hs mid year and is now in her 2nd year of college as some sort of lab chemist techno nut something or other, its way above my head. Any our granddaughter has been a bundle of joy and wonderful medicine for all of us. She has brought us closer in a whole new way. Wouldn't trade that little stinker for nothing. My daughter also used her ss money to buy a foreclosure home for less than 1/2 its appraised value. Not to many 18yr olds could do that. She is very smart. My youngest on the other hand is 17 soon to be 18 and I think I will end up having to kick her out sometime before she is 30 , she is so content on staying home and being around here. She works part time at two jobs and is also an inspiring photographer. She is super good.

        In all honesty things have gone pretty good around here today. We have all been civil and have tried to get a few good talks in about how we are both feeling and how we both need help. I hope its sinking in. When it starts to get to the pointing the finger stage I just get up and go in the other room and shut my mouth. Then I will try again later. I am not backing down this time, I have gotten to this point before but let it go and just kept doing the one foot in front of the other routine, but then I sink back to this spot, this time I will get him to listen, and the kids, and hopefully some outside help from somewhere somehow. Then we will worry about the money, the kids have suggested having some sort of fundraiser, but its been 5 1/2 years since he got sick, I don't know what people would think about it now so long afterwards and also because the kids would be hosting it, don't know how that would look either. Sad part is there is over $20K on charge cards which in large part is his ms meds that non of the MS organizations or drs. told us we could get some assistance for so for the first 4 years I was charging over $800 a month in meds when now I get them for $100 a month. No one told me till to long afterwards that the $6000 I charged for the hotel room while he was in the hospital could be deducted from taxes or at the least turned into insurance, now its too late, and I still have to pay. Again, thanks for listening and all the wonderful ideas.
        Dear Lisa,
        What you are experiencing is the downward spiral of denial. Yes, today was better, and you are bouyed by that. But, what of tomorrow and tomorrow and the tomorrow after that, when it all boils up again and you are once again in the dungeon of despair. You and David need to recognize that there are issues that need attention and need to be worked out now. Please speak with his physicians about David's mental state. You owe it to David and to yourself to bring this side of David's illness forward. There is no shame in the mental side of MS, although we are all very afraid and withdrawn about this side of any illness. I know you have the courage to fight for David and you will be his best advocate to get help for this side of his illness, just as you have for the physical impairments of MS.

        NL

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        • #34
          I felt that same way when I was just caregiving to my mom for a couple continuous months. I can not imagine there being no escape, like you guys have it. It was extrememy isolating & depressing. By all means, we/you know you love them but what y'all go through is too much for one person to endure everyday. I think, spousal caregivers, such as yourselves are hurt more than your injured partners in the end. People forget or don't think that you lost everything too, plus got tons of extra baggage. Much love to you all.

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          • #35
            Originally posted by quad79 View Post
            I felt that same way when I was just caregiving to my mom for a couple continuous months. I can not imagine there being no escape, like you guys have it. It was extremely isolating & depressing. By all means, we/you know you love them but what y'all go through is too much for one person to endure everyday. I think, spousal caregivers, such as yourselves are hurt more than your injured partners in the end. People forget or don't think that you lost everything too, plus got tons of extra baggage. Much love to you all.
            Beautifully said and hugs to you.

            NL

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            • #36
              Thanks again, I am taking in everything you have all said and just pondering what to do. I hope some of the calls I made are returned the first of the week. Today has been up and down all day. One minute I am ok, the next....in tears. I hate this feeling but do appreciate all of you.

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              • #37
                Grrr-I just found out BIL was in town for the week-end. He is Dave's only family member here, but works out of town a lot.
                My daughter was going to pick up his mail and she called and told me he was there.

                As of tomorrow Dave has been inside for 3 weeks. Do you think BIL could come and watch a movie with him? Bring some chinese food over? Offer to stay a couple hours so I can go get a haircut? Check to see if we need anything from the store since we are housebound? Oh-those are the things that MY family does, so why should he?
                He probably did not call because he is so selfish. No kids, wife etc. It is all about him.

                The thing is, my daughter's car would not start, told my mom to stay home, my son had a bus trip and my sister and niece were doing something for themselves and I did not want to ask them as they do so much for us already. Yesterday they brought us "meals on wheels" on their errands.
                Dave called him just now, but would never say anything.

                I blew up at Dave. It isn't his fault, so now I feel like a bitch.
                Adding this-I am venting and not asking for suggestions. I've tried everything including talking to his mother about it.
                Last edited by LindaT; 01-23-2011, 07:15 PM.

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                • #38
                  Oh Linda....see you really do know how I feel. I don't know why things have to be like this. But why would you expect him to help anyway, you just said he works out of town all the time and now he is home and he wants to relax. His life is still normal so why shouldnt he get to relax. Sounds like your Dave is as blind to the situation as my David. Guess that makes us both a bitch

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                  • #39
                    Originally posted by MSWIFE1 View Post
                    Oh Linda....see you really do know how I feel. I don't know why things have to be like this. But why would you expect him to help anyway, you just said he works out of town all the time and now he is home and he wants to relax. His life is still normal so why shouldnt he get to relax. Sounds like your Dave is as blind to the situation as my David. Guess that makes us both a bitch
                    Hell hath no fury like bitches married to Davids!

                    Dave says it is just the way he has always been-and it is true. As brothers they could not be more opposite. If BIL were injured Dave would be helping him.
                    Dave helped our friend who cared for her dying father.
                    I always swear I won't waste my energy getting pissed off at him, but here I go.
                    IF something is planned ahead and I or Dave ask BIL to come over for the afternoon he will. He is capable of getting him in his chair, shirt on,suctioning etc. But can't he just ever wonder if we need anything?

                    An old saying: Wish in one hand, shit in another. See which one fills first.
                    Last edited by LindaT; 01-23-2011, 07:29 PM.

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                    • #40
                      LOL

                      Linda I swear we are related somehow. David says wish in one hand shit in the other practically everyday!!!

                      Is there a such thing as MS/SCI sisters??? If so you are my twin.

                      Love ya - Lisa

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                      • #41
                        Originally posted by LindaT View Post
                        But can't he just ever wonder if we need anything?
                        Good question. Answer: No, I guess not. I ask the same about so many people in our family or tiny, still here, friend group. But they don't ever consider us without a kick to the rear. Not in 9 years now has anyone wondered what we need. Which is so weird. I like to think that I would wonder about my family if they were here, going through this.

                        Right now I am dealing with the huge cuts to our IHSS in CA. (I'm not hijacking the thread, I promise). I have to find a roommate to share our rent so I have spent the last few days completely reordering the condo we rent. I am so exhausted but doing the care giving to it's full and also moving myself out of my bedroom and re doing the kitchen to accommodate another person is almost like moving the whole house by myself. People know about this but no one is offering help. And if I ask for help (which is very hard for me) I get grudging resentful bits of huffy help.

                        So how am I to respond. I don't want to hold grudges. I choose not to live my life listing the sins of others. So I just agree, "It is what it is" and I want to live my life in peace. I want to be happy and no one else has the key to that for me. I trust that God sees me and is making it all good in the end as long as I am faithful to accept the sorrows He has entrusted to me. I'm happily a Catholic so I can tell myself that this is worth at least a bit of time off in purgatory. :-) And the suffering has meaning much more than that in the eternal plan. I just have to, as someone said, put one foot in front of the other, and keep on keepin' on.

                        Love to you on your rough tough journey.
                        "A smooth sea never made a skilled mariner"

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                        • #42
                          You are in no way hijacking the thread, vent away.

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                          • #43
                            Originally posted by MSWIFE1 View Post
                            You are in no way hijacking the thread, vent away.
                            ditto.
                            I've tried to follow the "it is what it is" concerning BIL and for the most it works.It is not worth the emotional drain is causes. I know that.
                            But then something happens and I explode again which does NO good.

                            I'm sorry you are dealing with the cuts and all of the work at your condo.

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                            • #44
                              I think it's time to pass Obie's peace pipe lol ....
                              Wife of Chad (C4/5 since 1988), mom of a great teenager

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                              • #45
                                Speaking of pipes, I won some tickets to a Blue's Fest at a benefit a while back and had to pick them up today at a little "head shop" in town. Haven't been in one for years.
                                I treated myself to a pedicure at a funny little shop with plastic fruit and Vietnamese signs. They were watching an old Steven Segal movie.
                                I feel like I have been in the Twilight Zone.

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