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    #16
    More - Namenda for cognitive/memory issues

    I forgot to mention that my hubby has been on Namenda for about 5 years also. It is an Alzheimer's drug but he feels it helps him some with cognition. He was on Tysabri for about 1-1/4 years but it triggered his manic depression - very high right after the infusion then gradually crashed to bottom before the next infusion. He was mean and loud and threatening. Of course, the neuro claimed no one had ever had that reaction but I don't believe it. He definitely had more energy right after the infusion but the up and down was horrible. On Copaxone he actually developed more lesions plus it's not known for helping cognitive or psychiatric problems associated with MS anyway. The interferons are notorious for causing severe depression (we know people who have attempted suicide on those drugs) so they can never be a part of his treatment.

    Another problem - he's not the only one in this house with health problems and that's an issue most doctors and other health care professionals seem to forget. I also have painful and limiting diseases so I resent the attitude that the MS is the only issue in our life. He does sometimes like to use it as an excuse for bad behavior anyway. Unfortunately, people with one autoimmune disease such as MS often do have other autoimmune diseases and he's one of them. Treatment for one disease messes up another.

    Somehow, we need to present a combined voice to the Society to deal with these mental issues and stop sweeping them under the rug. And, that includes the anguish and mental effects that we as care partners also experience.

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      #17
      One more thing .... (!)

      Goodness, I meant to put this in my post that I just submitted! Talk about memory ... (!)

      My hubby is still working and walking (thankfully) although the first time the neuro met him he was very surprised that DH could walk based on the MRI's. For him, as I've already said, it's more mental/behavioral and cognitive. That is the hardest to deal with since he can cover it up temporarily. Most doctors for years did not take it seriously and often I was considered to blame. Talk about resentment! He does not have the coordination and strength that he once did but was able to move heavy furniture about the house recently with my assistance. He was wiped out (so was I) but still we were able to do it.

      Sometimes I suspect there are different types of MS than currently recognized ... and the one several of us are dealing with as Care Partners is the "invisible" much denied mental/behavioral invisible destroyer of life.

      Comment


        #18
        Originally posted by mirey45 View Post
        Having just passed my 57th b-day I am really feeling tired and beat down from dealing with this d**n thing that has my wife. She was DX in Jan 1976 before we started dating and in a few days we will be married 32 years. Before we got married we sat down with Dr. and had the "talk" about what to expect, so I never went into this blind, kind of like a fireman going in while others ran "out" (away). We had 2 children, I worked hard, took care of her was both mother and father to our kids making up for what she could not do, never ONCE complained.

        In 89 I noticed her MS was doing something to her we did not expect. Physically she was doing good, no wheelchair, walker once in a while when she was weak or her right leg dragged, some loss of bladder, all in all a lot better then others of her age or length of time with it. Her MS was affecting her mind more then what we were told the cog damage might be. When I asked around about others in her family with MS (5) none of them had the problems that she had. Her Mother got so mad at me she didn't talk to me for months, which hurt because I really love my MIL.

        Contacted NMMS about this and was told in no uncertain terms "I was crazy" MS DOES NOT attack the brain. RIGHT now 20 years later she has been re-diagnosed as being one of the 6% where it goes to the mind more then to the body. Still coping though, still fighting along side her to beat this thing. Trying very hard to deal with all her new little quirks, her not understanding when someone says anything to her, but the way she verbally attacked me last night and my ulcer reaction this morning really is starting to make my mind play "what if".

        NMSS is NO HELP, family too far away and twice as useless as NMSS. I have given up a lot for her and our children, never once complained did it willingly for the "good of the team".

        I got involved with this forum a few months ago, and even though I don't know any of you personally, trust me this is the first place I have found some kind of peace and friendship in dealing with this. I'm not looking for anything I just needed to vent and get some of this out.

        Thanks
        Fight the good fight one and all.
        27/m/blessed

        Comment


          #19
          wondered

          i have wondered since it's introduction about this whole join the movement because ms is a disease that limits movement. i was only dx 4 years ago, had it for decades, and my research is little but i keep reading on ms boards of people that say they have no movement issues but lots of cognitive. i think this new campaign short changes these people.

          i have both issues but also have several other problems that it is hard to determine what causes which sx. i do know that my mris show that my cerebellum has atrophied at a level not expected from one of my age.

          i do not, nor have i ever done alchohol or drugs i dont know what caused such noticable shrinkage. i used to be a genius and now i am stupid. some times are better than others which only reminds me of what i have lost. then i am depressed.

          one thing, i have trouble getting words out, i know what i mean at the time, i also speak slowly and out of order. my caretaker. older brother, speaks to me then like i am 2 years old and i get very angry. he corrects me before i get a chanve to get a whole thought out. try to figure out if she is feeling this way and if you can work out a better way to communicate,

          karen

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            #20
            Originally posted by khs View Post
            i have wondered since it's introduction about this whole join the movement because ms is a disease that limits movement. i was only dx 4 years ago, had it for decades, and my research is little but i keep reading on ms boards of people that say they have no movement issues but lots of cognitive. i think this new campaign short changes these people.

            i have both issues but also have several other problems that it is hard to determine what causes which sx. i do know that my mris show that my cerebellum has atrophied at a level not expected from one of my age.

            i do not, nor have i ever done alchohol or drugs i dont know what caused such noticable shrinkage. i used to be a genius and now i am stupid. some times are better than others which only reminds me of what i have lost. then i am depressed.

            one thing, i have trouble getting words out, i know what i mean at the time, i also speak slowly and out of order. my caretaker. older brother, speaks to me then like i am 2 years old and i get very angry. he corrects me before i get a chanve to get a whole thought out. try to figure out if she is feeling this way and if you can work out a better way to communicate,

            karen
            Karen let me ask you this please, when you speak do you find you stop in mid-sentence trying to gather your thoughts? When someone speaks to you do you only hear half of the statement? Do you cut off others when you talk? When speaking to someone do you change the subject or go off in another direction?

            I just wonder because these are some of the things my wife has happen to her.

            Comment


              #21
              Originally posted by mirey45 View Post
              Karen let me ask you this please, when you speak do you find you stop in mid-sentence trying to gather your thoughts? When someone speaks to you do you only hear half of the statement? Do you cut off others when you talk? When speaking to someone do you change the subject or go off in another direction?

              I just wonder because these are some of the things my wife has happen to her.
              Although you weren't addressing me, I wanted to mention that I have certainly seen several MS patients who fit both descriptions. My husband cuts me off (he's always hyper and agitated, constantly picking away with his fingers) but I think it's more the anger and manic depression mixed with a lot of self centeredness. He does often answer a question with everything except what I asked. i.e., there's a different answer to "who" than to "what" or "how" or "why". When I point it out, he momentarily acknowledges it and goes right back to doing the same thing. His perception of what other people are saying or thinking (especially me) is badly skewed. Sometimes I can literally see that he is in an unreal little world of his own.

              At MS events I've seen MS patients whom I couldn't understand, others who had great difficulty getting a coherent thought pattern across, and others who could not go past the basic initial introduction. i.e., when the conversation began to branch out, they couldn't even begin to keep up and one person can get quite nasty.

              There is a little bit (very little) of an awareness now of cognitive and speech therapies for people with MS. For some patients it does help. For others, not so. I think it has to be fairly intense (although allowing for MSers fatigue) and constant to be helpful.

              I think that one of the points/issues that needs to be considered "is it ok for the MS patient to ruin my quality of life because he has MS?" I would say not. He needs to learn to control at least a portion of his behavior.

              Comment


                #22
                "Karen let me ask you this please, when you speak do you find you stop in mid-sentence trying to gather your thoughts? When someone speaks to you do you only hear half of the statement? Do you cut off others when you talk? When speaking to someone do you change the subject or go off in another direction?"


                I do cut people off and go in other directions. i doont mean to be selfish or rude it just is that if i capture a thought on the fly and do not get that thought out i will forget about it by the time it would be more appropriate to speed,

                as for not getting words out in this instance i know the words and have the thoughts in order but they get caught and do not come out. i have to push the speach to work out of me. i think i could write it down if i had the tools. this is when being spoken to in a condesending manner is so frustrating. sometimes i do forget words and dont mind being reminder. my family loves to talk politics and i try to be diplomatic so i may begin by intending to say "i understand their thought process but i think...: i never get the but out and i get jumped on "how can you agree with those idiots...".

                i dont even agree but never got to finish the thought.

                i have tried to establish a hand signal that means "give me a moment" but they cant be bothered.also i have asked repeatedly that if i ask to do things a certain way that does not make sense to them please dont ignore me than esplain every time why i am being stupid. i should not have to give the long explanation everytime.

                i dont mean letting me run out into the street, if i could, but as in when you carry groceries in for me put them here by the door and leave i will put them away myself. no it makes more sense to carry them closer to the kitchen and leave them scattered around,. i have a lot of visual loss now and need to put things away my self to remember where they are as well as being certain nothing is missed. this has become a bi monthly discussion with him and something always gets left out until it smells or the cats get it. then he calls me stupid for forgetting it. i have developed ways to cope just cut me some slack, i am not as stupid as i sound.

                Comment


                  #23
                  Not to beat an old horse to death, in a manner of speaking, but this might be an area where an informed professional person could be useful to both parties. The neuropsych my hubby sees has done presentations on MS and it's impact on the brain and the ensuing behavior. At least it's good to know WHY the behavior is happening. He also, in a group of care givers, was willing to list off the typical behaviors/issues seen with many MS patients. That's good to know too. For instance, carry-through is a big problem for many MSers and my hubby is no exception. However, I'm not accepting it as an incurable condition (the carry-through, I mean) and expect him to use adaptive strategies and a better attitude to finish tasks.

                  Really, it could help if the whole family could attend/hear a good MS neuropsych talk about the disease, the brain, and behavioral issues associated with MS. It might create a little less tension. I've urged the MS Society to do this but they are turning a deaf ear.

                  Comment


                    #24
                    venting

                    I hear you, venting is good and I dont mind reading it, sending you a positave vibe.
                    and I will today fight the battle.
                    battleing on

                    Comment


                      #25
                      Over the past several months I have been reading some of the forums, but this will be my first post.

                      This topic is very important to me. My husband was diagnosed with MS in 1990. He now has most of the physical symptoms of MS. About 1996 he started having memory problems. After that he began to develop a lot of the cognitive problems that have been discussed in this thread.

                      We did not realize what was going on until several years ago when I was given a copy of Jeffrey Gingold's book, Facing the Cognitive Challenges of Multiple Sclerosis. I read this book and found myself hilighting a lot of sections so that I could read them to my husband. (He has problems with his vision.) This book meant a lot to me because it made me aware of what was happening to my husband and that he wasn't doing things on purpose....he had cognitive problems because of his MS. It also meant a lot to him because he said that it was good to finally hear about someone else out there who was going through the same things that he was and that he was not crazy!!!


                      Dealing with Cognitive Problems is a topic that comes up almost every month a new member comes to our support group. We have copies of Jeffrey Gingold's book that we give to anyone who attends who may bring up any cognitive issues. {Of course they don't use that term, but once they start describing the various situations that have been mentioned in this thread, we realize that more than likely they are having cognitive problems} We also inform them about being evaluated by a Neuropsychologist, who will be able to determine if it is the MS that is causing the cognitive issues. When they come back the following month a lot of them say that his book describes their situation to a T.

                      Our support group is in constant contact with our Chapter of the NMSS and we are making them aware that a lot of people are dealing with cognitive problems and it is not just a "memory" problem. They have been very receptive with any concerns we bring to them.


                      Try to Remember that you are NOT alone in this!!! There are more people dealing with the cognitive issues than you think. {I believe that recent studies are showing that more than 50% of people with MS will have some sort of cognitive problem.} In fact, there could probably be a separate forum for Cognitive Issues!!!


                      Thank you for "listening" to my first Post!

                      Comment


                        #26
                        Originally posted by FRANSL View Post
                        Over the past several months I have been reading some of the forums, but this will be my first post.

                        This topic is very important to me. My husband was diagnosed with MS in 1990. He now has most of the physical symptoms of MS. About 1996 he started having memory problems. After that he began to develop a lot of the cognitive problems that have been discussed in this thread.

                        We did not realize what was going on until several years ago when I was given a copy of Jeffrey Gingold's book, Facing the Cognitive Challenges of Multiple Sclerosis. I read this book and found myself hilighting a lot of sections so that I could read them to my husband. (He has problems with his vision.) This book meant a lot to me because it made me aware of what was happening to my husband and that he wasn't doing things on purpose....he had cognitive problems because of his MS. It also meant a lot to him because he said that it was good to finally hear about someone else out there who was going through the same things that he was and that he was not crazy!!!


                        Dealing with Cognitive Problems is a topic that comes up almost every month a new member comes to our support group. We have copies of Jeffrey Gingold's book that we give to anyone who attends who may bring up any cognitive issues. {Of course they don't use that term, but once they start describing the various situations that have been mentioned in this thread, we realize that more than likely they are having cognitive problems} We also inform them about being evaluated by a Neuropsychologist, who will be able to determine if it is the MS that is causing the cognitive issues. When they come back the following month a lot of them say that his book describes their situation to a T.

                        Our support group is in constant contact with our Chapter of the NMSS and we are making them aware that a lot of people are dealing with cognitive problems and it is not just a "memory" problem. They have been very receptive with any concerns we bring to them.


                        Try to Remember that you are NOT alone in this!!! There are more people dealing with the cognitive issues than you think. {I believe that recent studies are showing that more than 50% of people with MS will have some sort of cognitive problem.} In fact, there could probably be a separate forum for Cognitive Issues!!!


                        Thank you for "listening" to my first Post!
                        You are very lucky your group and chapter are supporting people in this way. As I have said some cognitive issues are understandable, In my wife's case there are days both myself and our daughter who lives with us wonder what "planet" she is orbiting. Truthfully there are times I feel I can't even leave her at home alone because it's not safe for her.

                        She is seeing a new Dr. here in S. Illinois and I'm going to try to get her to see a Neuropsych over in Cape Gireadeau or Chicago, but I know I'm going to have a problem with that. the last time she went to one years ago in Chicago they did a I. Q. test on her and told her that it was between 85-100. She hit the roof claiming they were trying to claim she was an idiot, this is a woman who had to drop out of her 2nd year in college because of the DX she got. I guess I will just have to deal with that when the time comes.

                        Thank you all from the bottom of my heart for your tips and support. A lot of people don't realize that MS deals it's cruel action on more then the one who is DX with it. I'm just an average guy, "working joe" so to speak, had my share of battles in my life, won some lost some. This is one fight I take personally and trust me I'm not gonna let this son of a ***** beat me or her.

                        As I have said before, Fight the good fight one and all.

                        Comment


                          #27
                          Hi, mirey! I applaud you for doing your best to help your wife face some of the most challenging and unpredictable aspects of MS. Here is a URL that may provide some good info and insights on mental/cognitive problems that can occur with MS.

                          http://www.themcfox.com/multiple-scl.../psychosis.htm

                          By the way, I also highly recommend Mental Sharpening Stones: Manage the Cognitive Challenges of Multiple Sclerosis by Jeffrey N. Gingold.

                          Bless you for educating yourself about the more difficult aspects of MS ... difficult for your wife and, I'm sure, difficult for you as well. Hang in there! Just remember that we are here whenever you need a little support.
                          Auntie Lori (SPMS, taking LDN since 8/04)
                          * * *
                          Everything in life is a trade-off.

                          Comment


                            #28
                            could've saved some arguements

                            I'm new here and I'm blown away by such similarities. Especially since MS is so different in people. I've thought for about 3 years that my husband had some cognitive problems. I have mentioned this to his MS doctors for the past 2 years, but they fail to even respond to it. Now, the past year I know he's very much affected. Sometimes he asks the same question 2-3 times a day. He'll make a comment about a subject we talked about earlier while in the middle of a new conversation, or he'll make a comment about a conversation he thinks we're having but we're not even talking.

                            If we're with another couple and I make a statement, he'll make the same statement right after I do as if I never said it. Now, I don't try to make my point about what I said or what he said. I just let him be right all the time. The whole MS thing is really getting me down. I'm only 59 and am not ready to continue being a full time care-giver. If we travel or do ANYTHING it's so difficult for me. I have no fun at all and I don't think he realizes it. I'm going to love this forum and I think it'll help me a lot! Thanks for "listening".

                            Comment


                              #29
                              Originally posted by flygirl View Post
                              I'm new here and I'm blown away by such similarities. Especially since MS is so different in people. I've thought for about 3 years that my husband had some cognitive problems. I have mentioned this to his MS doctors for the past 2 years, but they fail to even respond to it. Now, the past year I know he's very much affected. Sometimes he asks the same question 2-3 times a day. He'll make a comment about a subject we talked about earlier while in the middle of a new conversation, or he'll make a comment about a conversation he thinks we're having but we're not even talking.

                              If we're with another couple and I make a statement, he'll make the same statement right after I do as if I never said it. Now, I don't try to make my point about what I said or what he said. I just let him be right all the time. The whole MS thing is really getting me down. I'm only 59 and am not ready to continue being a full time care-giver. If we travel or do ANYTHING it's so difficult for me. I have no fun at all and I don't think he realizes it. I'm going to love this forum and I think it'll help me a lot! Thanks for "listening".
                              I'm sorry that you have to "deal" with this form also Flygirl. To me it seems like my wife has just more then Cog problems. It seems like something a lot more serious.

                              Let me ask you this, how are the other aspects of your DH MS? Physically does he seem to be doing better then others with it? How long has he been DX? My wife had it for 13 years before the "damage" started in her mind and I have been dealing with this for 20 years. It's not a whole lot of "fun"

                              My real fear is what going to happen down the road. How much "worse" is she going to get. Dr's and MS have no clue as to what to tell me or anybody else that have to face this. I just feel sometimes it's a "double" whammy this has put on us, though it seems there are times that she is not even aware of what it's doing to her, I and my daughter are the only ones who see it and have to deal with it.

                              Hang in there Flygirl, someday we will all find the answer.

                              Comment


                                #30
                                Wow, I had no idea how many people are in the same boat as me. My dh was dx. 3 yrs. ago and he too has only psychiatric symptoms. His personality has changed so much. He can't remember anything. He has bouts of rage and after he does not remember it even happened. I realize this is due to the ms. And I dont think it is going to get better.

                                Here is my issue. I am only 37, he is 38. MS is not a fatal disease. So we have alot of years to deal with this. How do you do this? It is like being married to a completely different person. How do you adjust? I don't have any advice for you. I am still trying to figure this out.

                                He did go for the expensive neuropsych. testing. We had to pay $1500 for it. Insurance would not cover. Yes, it verified that he has severe cog. impairment. It was enough to get his disability approved. But they gave us nothing for advice on how to live with this. It was implied that there really is nothing that can be done to help us. Right now we are paying $200 per month for counseling for him. I dont see how it is going to help. After the appt. he cant remember anything that was said. And I am going to have to get a 2nd job just to pay for his counseling. BTW, we have 3 young kids and I already work full time.

                                Sorry for all the rambling, I am so fed up with all the doctors with their head in the sand about this problem. I just wish that there was somebody out there that could help us improve our quality of life. I know that I should be going to counseling. But I feel that he needs it more than I and we can't afford us both. Sorry for the long vent, you definately are not alone.

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