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    #31
    Oh yes it can

    Diagnosed in Dec. í01.

    I had a particularly bad flare up a couple of years ago and it was of my own making. I was working too hard, too long, in the heat, and under a lot of stress. I had some serious cognitive problems, concentration, memory, problem solving.

    I was so worried that underwent a 3 day Neuro-Cognitive Analysis. This consisted of tests over a 3 day period, problem solving, puzzles, memory recall and other physical tests. They insisted all tests be conducted in the morning. Thatís my best time, and I wanted the tests in the late afternoon. But they said to evaluate my cognitive level I should be at my best time of the day.

    Well, after the 3 days of testing and two weeks of test analysis, they said I indeed had some minor cognitive issues. I knew that. If they had did the tests after a hard day of work. The results would have been very different.

    The bottom line was MS does cause cognitive problems and can be managed. For me that meant the usual - take care of myself, eat right, get sleep, ease up on the beer, and avoid the heat.

    But to your question, yes MS can and in some cases can cause cognitive problems.

    My cognition has worsen over the years and is the main reason I have little confidence in pursuing additional education, training and credentials.

    Peace be with you

    Comment


      #32
      All day neuropsych testing

      When my hubby had his last neuropsych test 3 + years ago with someone who specializes in MS, the test was scheduled to run all day starting at 9:00 am. MS patients tend to perform quite differently when fatigued and they fatigue faster than the so-called "normal" population. That is important for the doctor to know to get a realistic picture. That is the reason for the all day (until 5:30 or 6:00 pm) testing. (Perhaps also because it might be hard to get them back.) I was not told about it in advance and after driving around for an hour and a half gave him the ultimatum to come out and finish the testing some other time or walk home. He left and finished the testing another day. If the neuropsych's office had given me better info through my hubby (who doesn't think straight so they should have talked to me directly) it would not have been so upsetting.

      I think the total bill was pushing $2,000 although we ultimately only pd. $25.00 If they had listened to me they might have gotten paid more but doctors don't hire the brightest so he got screwed on it. Since he is on the insurance network he could not ask us for the remainder of the payment.

      It's important to go with your spouse to find out the outcome of the testing and ASK FOR A COPY OF THE REPORT. Then ASK FOR THERAPUTIC INTERVENTIONS. They are out there although a lot of them are computer based. Push it 'til you get it!!!!

      Comment


        #33
        My question is for hubbyMS. Did they give you any therapeutic interventions? I did attend the appt. with my hubby. the doc. basically said that once cognitive issues start, they likely only get worse and there isn ot much that can help. He suggested that my dh see a psychiatrist for medications.

        really, if there is a magical pill that would control his symptoms, we are all for it. He is on cymbalta, it helps the depression just a little. But does not help with the temper tantrums. If there is anything out there aside from meds, I would love to here about it.

        If there is anyone out there that has tried any type of therapy or cog. rehab, I would love to here about the results. because honestly, counseling is nice for him to have someone else to talk to, but it is not changing anything, and he really forgets what they talked about.

        I am so lost and confused. And its even harder for the kids.

        Comment


          #34
          Originally posted by Crazymamma View Post
          My question is for hubbyMS. Did they give you any therapeutic interventions? I did attend the appt. with my hubby. the doc. basically said that once cognitive issues start, they likely only get worse and there isn ot much that can help. He suggested that my dh see a psychiatrist for medications.

          really, if there is a magical pill that would control his symptoms, we are all for it. He is on cymbalta, it helps the depression just a little. But does not help with the temper tantrums. If there is anything out there aside from meds, I would love to here about it.

          If there is anyone out there that has tried any type of therapy or cog. rehab, I would love to here about the results. because honestly, counseling is nice for him to have someone else to talk to, but it is not changing anything, and he really forgets what they talked about.

          I am so lost and confused. And its even harder for the kids.
          I'm have been looking into this for some time and I'm going to share with you Crazymama.

          There is a transdermal patch for Altz called Exelon. When I found it and read all about it use and sides I called Novartis the maker of it and suggested they do a study on it and it's help in the cog issues of MS patients. At the same time I passed this on to NMSS NEVER heard back from them, Novartis found it so interesting in less then a month they started a study in Germany using this drug application.

          You might want to suggest this to your MD the study is listed on the NIH web site, # 37 in MS studies. One warning this drug is VERY EXPENSIVE (what is not) I priced it at about $250.00 a month. Personally as a former health care professional( pharm Tech over 20 years) MS, Altz and Parkinson's all share similar traits, and a lot of the RX just may help the other.

          Good Luck Bless you and don't give up, don't ever give up.

          Comment


            #35
            MS Cognitive Interventions

            Goodness, mama, I really do feel for you because of the similarity in situations and also because I have ties to Michigan although I do not live there. Trying to address your questions here ....

            Theraputic Interventions

            Yes, there have been and they have helped although not to the extent that I guess I would really want. As the neuropsych said, he's never going to be "normal." He is able to work although he has difficulty with some tasks such as writing complex reports. The neuropsych is of the opinion (and I have to agree) that it's what one does with what one has that is important. And, I have found that my husband has more capability than what he thought.

            The "interventions" have been:

            1. Psychotherapy with the neuropsychologist. Not sure what it's called but he stops my hubby from talking/wandering verbally and mentally into a black hole. He "engages" him - does not let him mentally detach and that is VERY IMPORTANT and takes a lot of energy. He sees the neuropsych (who specializes in dementia and especially MS) about every two weeks. Fortunately our insurance pays half. The neuropsych is also very good at calling my DH on his messed up thinking (his perceptions that are way off) and even DH admits he needs it. I sometimes go in for the last few minutes of the session plus I can email the neuropsych between DH's visits. DH is aware of this too - important because he is known to play one side against the other.

            2. Psychiatry which is nothing more than pill pushing. The anti-depressants that he was on for many years actually made the bipolar 2 / mood disorder worse and it is now known that that can happen. Since mood disorders are more common in MSers that's important to keep in mind.

            He takes Lamictal and Trileptal every day for the behavioral problems. Trileptal can cause some neurological side effects but those effects have lessened. His dose on both meds are actually considered subtheraputic but they seem to help so what else matters? He also takes Namenda, a drug developed for Alzheimer's that he finds helps to some degree with memory. He did find that taking the full dose (think it was 10 mgs 2 x a day ?) seemed to put him a bit over the edge into manic episodes so I think he's cut it to once a day now trying to find a happy medium.

            3. Cognitive therapy. This is a little less easy to quantify. When he was misdiagnosed as having a stroke he went to cognitive therapy. They gave him paper based mind "games" or puzzles that force one to make decisions based on variables of varying degrees of complexity. He did get better. They also taught him to type something on the computer (just a simple statement), and say it out loud. It helps to "cement" it in the mind. They also worked with him on walking and other physical exercises.

            The neuropsych used a program (it was awful - way out of date with lots of errors) for some research he was doing on cognitive rehab that helped to increase attention and memory. In one of the types of exercises the screen showed a series of numbers (3 to 6 or more) for a few seconds. Then the numbers went away and the learner had to type them exactly in the same order. There are a lot of other things too - comparing shapes and sizes and colors. Done right it probably could be a good thing but it's also an individual activity and from my point of view allows for more disconnectedness and detachment in our relationship. Probably flash cards could work too but you would need someone to lean on your husband enough to get him to do it. Motivation can be an issue.

            For the right audience these activities are probably of some help, especially if they are developed properly and are easy to use. Repetition does work. I know there is another research project coming up, this one by a university (there are probably different ones in other parts of the US) re cognitive rehab interventions that also include classes once a week in which they learn compensatory skills. It's important that these cognitive interventions are shared to some extent with the care givers so they know what's going on. It's also important to have staff who act and conduct themselves in a professional manner.

            Yesterday the neuropsych said something to the effect that my DH wasn't necessarily going to get any worse (on the other hand, I'd say he really doesn't know). If you read about brain plasticity on the internet you'll find that what your doc said is not exactly true. The brain is far more capable of being retrained than they once thought and some limited studies have shown this to be true. Also look up cognitive rehabilitation MS. The doctor who told you that bologna is a dinosaur. I'd fight like mad to get better care - I've had to do it a lot myself!

            Take care of yourself!


            Originally posted by Crazymamma View Post
            My question is for hubbyMS. Did they give you any therapeutic interventions? I did attend the appt. with my hubby. the doc. basically said that once cognitive issues start, they likely only get worse and there isn ot much that can help. He suggested that my dh see a psychiatrist for medications.

            really, if there is a magical pill that would control his symptoms, we are all for it. He is on cymbalta, it helps the depression just a little. But does not help with the temper tantrums. If there is anything out there aside from meds, I would love to here about it.

            If there is anyone out there that has tried any type of therapy or cog. rehab, I would love to here about the results. because honestly, counseling is nice for him to have someone else to talk to, but it is not changing anything, and he really forgets what they talked about.

            I am so lost and confused. And its even harder for the kids.

            Comment


              #36
              Self Preservation is Mandatory

              Just wanted to briefly address this most difficult and painful issue. I don't have the answer, of course, just thoughts. Frankly, I don't think we can allow one person to take the whole ship down even if it's not their fault.

              The kids really need at least one parent who is able to provide the emotional and other types of support kids should have. If that means giving less to the MS spouse then so be it. Sometimes things just have to be divided up and one person can not get the lion's share. We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that). Children are defenseless and MUST get some counseling and other therapies to help them through this difficult time.

              Finally, as I said in the other posting, it could be that with the APPROPRIATE therapy(ies) that your husband might do a little better.

              Most of all you need to look out for yourself and the little ones.


              Originally posted by Crazymamma View Post
              My question is for hubbyMS. .... I am so lost and confused. And its even harder for the kids.

              Comment


                #37
                hubbyms- thank you so much for the info. We live in a very small community and have limited access to specialists. We really have no psych. doctors that specialize in ms. As it is we have to travel 120 miles to see dh's neurologist. And the big problem is the neuro. is very conservative. He is not willing to try anything that is off label. And the neuro will not prescribe any pschy. meds. He says we must see a psychiatrist. Which is very expensive. So my dh's family doc. will prescribe the antidepressants. But he really has no clue what to prescribe.

                But dh does have an appt. with a psychiatrist in about 6 weeks. Hopefully, this doc. will know alittle more about what meds he should be on. And we finally located a new neuro. alittle closer. Only 90 miles away. His appt. with the new one is next month. I am really hoping we will like him and maybe he will be alittle more progressive and willing to try things off label.

                I am interested in this cognitive rehab. Hopefully the new neuro. will have some ideas. I am just worried that if there is something available, it wont be local. My dh still drives, but his license is restricted to no more than 50 miles from home. WHich means I have to take him. And I can only take so much time off work. As it is, all my vacation time goes to medical appts. I cant remember the last time I was able to take a full week off work for vacation.

                Well, it does sound like there is help out there. We just have to find it. But it really help knowing that I am not the only one out there going through this. Our family really does not get it. And most of our friends kind of backed off. I think they just dont understand what has happened to dh.

                Thank you again for sharing your information.

                Comment


                  #38
                  Originally posted by HubbyMS View Post
                  Just wanted to briefly address this most difficult and painful issue. I don't have the answer, of course, just thoughts. Frankly, I don't think we can allow one person to take the whole ship down even if it's not their fault.

                  The kids really need at least one parent who is able to provide the emotional and other types of support kids should have. If that means giving less to the MS spouse then so be it. Sometimes things just have to be divided up and one person can not get the lion's share. We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that). Children are defenseless and MUST get some counseling and other therapies to help them through this difficult time.

                  Finally, as I said in the other posting, it could be that with the APPROPRIATE therapy(ies) that your husband might do a little better.

                  Most of all you need to look out for yourself and the little ones.
                  Brilliant! Can't forget about #1. Who else can hold things together?
                  If you burn yourself up.... then who cares for the family?
                  Making a weekly plan for the family and assigning task's may make things more managable and lessen your feelings of frusteration.

                  Mental faults are the most difficut to manage with out going nuts yourself?

                  Comment


                    #39
                    One thing I must say about children, my son and daughter have lived with this from day one of their lives. Because of that they are very comfortable with disabled people of all walks of life.

                    At college my son was hired to be a helper for a home of developmentally disabled men. One of the questions when interviewed was how "comfortable" did he think he would be working there. His response was that he had 2 disabled parents one with MS his whole life that being around this was a way of life for him. They were sorry to see him leave when he graduated he worked out so well. He still stops by when he's in that town to see the men and visit with them.

                    At least they as adults understand what this can do to people and see that sometimes they need some help, not like a lot of people do.

                    Comment


                      #40
                      We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that).

                      HubbyMS I have to ask where you saw this or found this information. I have never seen this mentioned anywhere before and I would like to have this information please.

                      Comment


                        #41
                        Mirey,

                        I subscribe to an email listing (free) of the latest medical news called "Medical News Today Newsletter." I'm thinking it was 1-1/2 (?) years ago that I saw the article/study about caregivers and their greatly increased rate of disease and even early death. Since I didn't add it to Favorite Places I cannot find it now. If you wish to find statistics on this topic they are certainly out there although most tend to be concerned with caregivng of and by older people.

                        Some of us here in this thread are dealing with MS spouses who actually have a form of MS dementia - sometimes mild - not old age or alzheimers - but have reduced executive functioning (you can google that, too). Temper tantrums, mood swings, anger, obsessions, and other upsetting behavior often go with it and mood disorders associated w/MS can cause similar symptoms. We have lost our marriage partners - they are not the same people - and our well being is being greatly compromised. We wish to do what we can for our spouses/partners but must come to grips with our own needs.

                        Meantime, here are a few of the articles that I collected on well-being issues of caregivers.
                        Caregiver burden in multiple sclerosis: the impact of neuropsychiatric symptoms Published Online First: 19 January 2007. doi:10.1136/jnnp.2006.104216
                        Journal of Neurology, Neurosurgery, and Psychiatry 2007;78:1097-1102 Copyright © 2007 by the BMJ Publishing Group Ltd.



                        http://jnnp.bmj.com/cgi/content/abstract/78/10/1097

                        Alarming Statisics on Family Caregivers

                        http://www.examiner.com/x-4682-Caregiver-Examiner~y2009m5d16-Alarming-statistics-on-family-caregivers

                        http://codi.buffalo.edu/graph_based/...nf/.stress.htm

                        http://www.psychologytoday.com/blog/...ich-generation

                        http://www.rimed.org/medhealthri/200...009-03-106.pdf

                        http://www.thefamilycaregiver.org/wh...tatstics.cfm#3

                        http://www.ynhh.com/healthlink/menta...alth_3_04.html

                        http://www.blisstree.com/articles/ta...aregivers-117/
                        Originally posted by mirey45 View Post
                        We as spouses (care partners) have a RIGHT to a quality life (our death rate is earlier & serious illness more common than the normal population - try to get the NMSS to listen to that).
                        Originally posted by mirey45 View Post

                        HubbyMS I have to ask where you saw this or found this information. I have never seen this mentioned anywhere before and I would like to have this information please.

                        Comment


                          #42
                          Thank you so much HubbyMS, the way you put it MS dementia is so perfect. I have seen this coming on for a long time in my wife and until now by finding others going through this same battle could get NO ONE to believe me.

                          I need to understand the points I asked you about but in a way I'm thinking to myself "Great now what do I have to look forward to." Sometimes I feel that this is a "tunnel" I'm NEVER going to see the end of.

                          Thank you for your help HubbyMS, keep strong and hopefully if we somehow all stick together we can get through our own little personal he**

                          Comment


                            #43
                            Cognitive or Dementia or Mood Revelations

                            While searching the internet I did come across some sites (and I know there are a lot more) that talk about cognitive problems and some proposed solutions (well, more like aids). Just thought I'd pass it on for some ray of light.

                            Swallowing, Speech, and Cognitive Problems in MS
                            http://www.mscare.org/cmsc/images/pdf/2006CMSC_Fundamentals_Schaude.pdf

                            The clinical neuropsychiatry of multiple sclerosis - a book

                            (there are some sample pages that that talk about forms of mental illness & MS) By Anthony Feinstein
                            http://books.google.com/books?id=e2KBALlZ-tsC&pg=PA66&lpg=PA66&dq=multiple+sclerosis+bipolar &source=web&ots=lmcCFfKN-3&sig=QD9CzudkdTMQ6iRrKIEHyJKLFI8&hl=en&sa=X&oi=bo ok_result&resnum=1&ct=result#v=onepage&q=multiple% 20sclerosis%20bipolar&f=false

                            Multiple sclerosis and bipolar disorder: a case report with autopsy findings

                            http://neuro.psychiatryonline.org/cgi/content/abstract/8/2/206

                            http://neurotalk.psychcentral.com/thread77565.html

                            http://www.mscare.org/cmsc/index.php...547&Itemid=541

                            Contribution of cognitive difficulties to disability in persons with multiple sclerosis
                            http://apha.confex.com/apha/137am/we...per196173.html

                            http://www.researchgrantdatabase.com...rsons-with-MS/

                            http://multiplesclerosis.blogharbor....2/3476318.html

                            [quote=mirey45;1171827]Thank you so much HubbyMS, the way you put it MS dementia is so perfect. I have seen this coming on for a long time in my wife and until now by finding others going through this same battle could get NO ONE to believe me.

                            I need to understand the points I asked you about but in a way I'm thinking to myself "Great now what do I have to look forward to." Sometimes I feel that this is a "tunnel" I'm NEVER going to see the end of.

                            Thank you for your help HubbyMS, keep strong and hopefully if we somehow all stick together we can get through our own little personal he**[/quote]

                            Comment


                              #44
                              After going through ANOTHER day of this, I really wonder why I put myself through all of this he** and heartbreak.

                              I mean no matter what I do or say I'm always the one that's wrong, no matter what reason

                              I just don't know anymore.

                              Comment


                                #45
                                Yes, I can well imagine that there's some question as to whether it's worth it. My situation is generally not quite that bad (although it escalates more often than I would like) and I feel frustrated over the lack of very clearly defined strategies for dealing with this. In fact, I'm becoming more vocal about it.

                                Truly, you need someone to work with your wife about her behavior and who will get her on medication that helps to control her attitude and lack of self control. That's probably going to be in the form of more than one "therapist." I know it's not popular to complain about the harm done by someone with a disease but there is a bit more awareness of how devastating it is for the caregiver. You need someone in your corner, too, and more than just a chance to vent (which is good); you need clearly defined strategies with lots of follow-up for yourself.

                                You might try asking the MS Society for names of therapists who specialize in MS or at least neurological diseases in your geographic area. Beware, though, that sometimes they are looking out more for the MS patient than the caregiver. You might also consider briefly "interviewing" prospective therapists on the phone to get a feel for whether they might have anything to offer you.

                                Finally, and I don't really necessarily recommend this, but you might consider a trial period of separation. Try to tell your wife that you feel this is necessary because the relationship has become harmful although admittedly I doubt that she will listen. It might get her attention if you do lead separate lives for say a couple weeks or so. I don't mean leaving her in the lurch; arrange for someone(s) to make sure she has necessities. This is a very emotionally impactful action so think it through.

                                There are a lot of complicated aspects to relationships so there isn't any one good answer or approach. It needs to be tailored to your situation and your wife. But, it isn't good for either of you to live in total misery either. Until an intervention takes place, and it might have to be rather dramatic, I doubt that anything will change. That tends to put you in the driver's seat as the one to initiate change.

                                Best to you.

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