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Wife's RARE MS beating me down

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    #46
    Have an appointment on Monday 10/05 with wife's neuro, going to try AGAIN to get her cooperation with giving my lovely wife LDN to see if it will help some in this "war" against her loss of mental functions.

    Nerve cells are so adaptable, they say that if you cot or damage a nerve cell it stops working, but it will ALWAYS find a way to reroute it self, that's what I hope the LDN will help her mind do.

    If I can't get some "help" from her Dr. then I am really serious about taking her to a Dr. in the Chicago suburbs that I have found that works with the LDN treatment.

    I guess all I want is someone to give us some "hope". If the LDN works GREAT, if not then we are no better off then we are now, but at least it's a chance that's all we want.

    Hang in there one and all, keep fighting remember "It's not about how hard you can hit, It's about how hard you can get hit and keep going"

    Wise words from the "great" sage of wisdom, Rocky Balboa. Peace and love to you all

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      #47
      mirely,
      I'm in the same boat.. no paddle .. no nothing...
      The physical loss was hard enough, but the cogitative loss has been devastating! My Husband was a furniture designer, and he can no longer use a screwdriver... breaks my heart. He is a smart man and he is having such difficultly with word retrieval...breaks my heart... and my 2 young children are so confused...

      Comment


        #48
        You are down, but...

        People are here for you. You have the compassion of an exceptional caregiver. You see MS, fight it and right now you are searching for the positive. Sometimes you need to step back and get a fresh view. This is very hard to do in your situation. Call on anybody around...churchmember, someone that you can talk to who will not judge..just listen and offer advice. You are doing the right thing...you do need to get help for you...someone in your community is the one who has it...please keep searching. Your wife's MS is hers and you are sharing her burden...God bless you. Sometimes you need to "take care of you". You'll both benifit from it.

        Comment


          #49
          Originally posted by scribble View Post
          mirely,
          I'm in the same boat.. no paddle .. no nothing...
          The physical loss was hard enough, but the cogitative loss has been devastating! My Husband was a furniture designer, and he can no longer use a screwdriver... breaks my heart. He is a smart man and he is having such difficultly with word retrieval...breaks my heart... and my 2 young children are so confused...
          Scribble for the longest time I thought that I was the only one having to deal with MS in this form. Dr., family, friends even NMMS told me I was "crazy" MS does not act this way, RIGHT!!! Since being on here for the last 10 months I'm finding there are a lot of others in as you say the same boat, although sometimes It's more like a leaky raft.

          They would call this "gut check" time in other circles. Somehow all of us in this position have to dig down deep inside of ourselves and find that inner strength to face this ba***rd MS and don't let it win. I have been fighting it head on for my wife for 33 years and trust me some days when I go to bed so down from it, the next morning I get up and look for new ways to get the upper hand on it again.

          Your 2 children may be confused right now, but if you help them understand what there father has, trust me they will grow to be wonderful, caring, compassionate adults that will never fear people with "problems". Children do adapt.

          I always close a post with a quote, I leave you my favorite from Coach Jimmy V when he was dealing with brain cancer. "Don't give up, don't ever give up" . Together there are strength in numbers, with all of us supporting each other, we can and we WILL beat this thing that our loved ones have, they have MS, MS don't have them.

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            #50
            Need NMSS Support for Cognitive, Bipolar, Dementia

            What I would really like to see is more support from the NMSS re both cognitive issues, dementia, and mental illness ranging from depression to bipolar that is associated with MS. Bipolar occurs somewhere around twice as often in MS patients as in the general population. However, the treatments for Bipolar have not been tested for MS patients. For instance, Lamictal was tried recently in MS patients as a possible treatment (although I don't think they were trying to use it for bipolar MS patients) and it was found that it actually caused more lesions. Fortunately, when the patients got off the drug the lesions subsided. Dementia (lack of executive functioning) is another frustrating aspect of the disease.

            I think the MS Society could do a lot more in terms of using skilled facilitators - psychologists or other professionals who really know how to interact with a group (family/friends) and how to arrange things effectively so people come away feeling like they've gained something. I don't care for the support groups for care givers - they've largely disappeared in this community anyway. I want someone who is truly a professional and enthusiastic and shows leadership skills and I want it in live (in person) workshops say once every month or two.

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              #51
              Originally posted by HubbyMS View Post
              What I would really like to see is more support from the NMSS re both cognitive issues, dementia, and mental illness ranging from depression to bipolar that is associated with MS. Bipolar occurs somewhere around twice as often in MS patients as in the general population. However, the treatments for Bipolar have not been tested for MS patients. For instance, Lamictal was tried recently in MS patients as a possible treatment (although I don't think they were trying to use it for bipolar MS patients) and it was found that it actually caused more lesions. Fortunately, when the patients got off the drug the lesions subsided. Dementia (lack of executive functioning) is another frustrating aspect of the disease.

              I think the MS Society could do a lot more in terms of using skilled facilitators - psychologists or other professionals who really know how to interact with a group (family/friends) and how to arrange things effectively so people come away feeling like they've gained something. I don't care for the support groups for care givers - they've largely disappeared in this community anyway. I want someone who is truly a professional and enthusiastic and shows leadership skills and I want it in live (in person) workshops say once every month or two.
              HubbyMS I truly agree with you, I feel NMSS wants to keep this "under the rug" as much as they can. By not admitting that this can cause serious damage to the mind then they keep it a nice "clean" disorder. The new Dr. my wife is seeing is very much into the NMSS "program". She will not even listen to my daughter or me about my wife's mental problems, and is pushing real hard her getting on a drug for the physical problems even though they are minor compared to others.

              As far as NMSS "helping" caregivers, that's a joke. Since the early 90's I have been told about a peer program by phone to help each other, and give caregivers support. When I talked to them just a few months ago, I was told " we are almost ready to get it going" , after at least 15 years I would hope it will be ready in my lifetime. That's why I feel this forum has been a godsend for me.

              Comment


                #52
                HubbyMS, I found this today on a site called Alzheimer's Outreach, thought I would share with all. More info then NMSS gives or at least I feel.

                ***Copy and pasted material prohibited per MSWorld Guidelines. Thanks for your understanding***

                Good luck to all dealing with this form, personally I feel we and our loved ones are getting the real "short end of the stick" from NMSS. Some how we have to stay together and find answers ourselves. That's the only help I can see, then we have to get SOMEONE to listen and help.

                Comment


                  #53
                  Hang in there Mirey. I admire your stamina.

                  Try to remember she is not the judge of right and wrong.
                  Just do your best and if she wants to act a fool or be angry, that is not your problem.

                  Even if she sceams horrible things at you or is disrespectful towards you it does not mean that you are not a good and respectable man.
                  (it just mean's she's a little nut's?)

                  You don't have to have MS to be a "head case".
                  My family tree is full of them but I'm the one with MS.
                  (or maybe I'm the "head-case" and too far gone to know it?)

                  Comment


                    #54
                    My mother is the same way. It seems all her symptoms are cognitive and it's heart breaking to watch!! I often think of my father (my parents have been married 28 years) and wonder how he's coping with all this. He's not a "I wanna talk about my feelings," type of guy, but I know this has to be affecting him!! I know I struggle a lot with it, so I know he must be too.

                    My mother's neurologist wants her to go to Kessler institute, hoping that they can re-teach her brain how to remember and relearn some normal day to day functions.

                    Comment


                      #55
                      Neurologists not the best for cognitive & mental

                      Unfortunately, neurologists tend not to support the now-known fact that MS does affect cognition and behavior. Probably the best specialist is a neuro psychologist or neuro psychiatrist ... and one with experience in MS. Although somewhat interrelated they are all different specialties.

                      Comment


                        #56
                        Cognitive worries

                        Originally posted by HubbyMS View Post
                        Unfortunately, neurologists tend not to support the now-known fact that MS does affect cognition and behavior. Probably the best specialist is a neuro psychologist or neuro psychiatrist ... and one with experience in MS. Although somewhat interrelated they are all different specialties.

                        You're absolutely right about the neuro's Hubby.

                        I am trying to get a hold of the neuro psych that did my testing last year. There were big deficits and issues found and my neuro never followed through on her reccomendations.

                        Now things have worsened to the point I can't always trust myself to be alone and my communication skills are getting worse. I'm trying to explain it all to my husband and the 2 sons still living at home but they think it's 'just an excuse'.

                        To me thus far this is the most frightening of sxs, even more so than the vision loss.

                        Gina
                        Faith, Hope & Love
                        Gina
                        MS 1988 SPMS 2005

                        Comment


                          #57
                          Originally posted by JGraves View Post
                          My mother is the same way. It seems all her symptoms are cognitive and it's heart breaking to watch!! I often think of my father (my parents have been married 28 years) and wonder how he's coping with all this. He's not a "I wanna talk about my feelings," type of guy, but I know this has to be affecting him!! I know I struggle a lot with it, so I know he must be too.



                          My mother's neurologist wants her to go to Kessler institute, hoping that they can re-teach her brain how to remember and relearn some normal day to day functions.

                          JGraves, I can feel for your father. I don't speak about it much with my children. One big reason is that they don't have the same relationship with there Mother that I do. My daughter tells me " I live here too, I have to deal with it also". Yes she does, but it's different being a mother then a spouse. I'm the one that chose to spend my life with her, love her, protect her and be together through all the good and the bad. When it started to get really bad, I could have done what some do and left. No I stayed, took on a double dose of responsibility and fought just as hard as I could for us and our family.

                          I'm sure someday your dad will open up about his feelings, maybe not to you but to someone, in his own time. Until then be there for him as best as you can, he needs support as much if not more then your Mom.

                          Comment


                            #58
                            Mirey,

                            I googled the website you mentioned and thought that they had some ideas that the MS Society could adapt for us. For example, here's what I found with some of my own ideas thrown in.

                            ***Copy and pasted material prohibited per MSWorld Guidelines. Thanks for your understanding***

                            I wonder if the Society pays any attention to these message boards?

                            Hubby MS

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                              #59
                              Gina, this is where an active care partner is important. I have intervened or at the very least supported my hubby in obtaining the reports and the meaning and asking for interventions (treatment) for the cognitive aspects as well as psychotherapy. I'm planning to bring it up again. There are research studies using cognitive rehab strategies, mostly on computers but that's not as helpful in his case.

                              Frankly, a well worded polite letter would be in order to the neuro psych at this point. It needs to state what was completed (with appreciation) and what is expected - therapy. If she/he continues to ignore it I would go to the Joint Commission. It sounds like denial of care.

                              Also, there are meds out there to help with memory. Namenda is one of them and I think someone mentioned another med earlier in this thread. There are also mood meds (psychiatric meds that were originally developed for epilepsy) that can help in someone with mood swings. Anti-depressants are sometimes helpful for some people with depression but in people who actually are bipolar (and might not know it) they can make the symptoms worse. MS drugs are not the only drug treatment - there are other meds for the symptoms. My hubby takes Naltraxone 3 mgs a day which gives him a bit more energy. Tysabri has helped several people. I wouldn't give up on treatments ... keep searching for one or more for you.


                              Originally posted by MSGina View Post
                              You're absolutely right about the neuro's Hubby.

                              I am trying to get a hold of the neuro psych that did my testing last year. There were big deficits and issues found and my neuro never followed through on her reccomendations.

                              Now things have worsened to the point I can't always trust myself to be alone and my communication skills are getting worse. I'm trying to explain it all to my husband and the 2 sons still living at home but they think it's 'just an excuse'.

                              To me thus far this is the most frightening of sxs, even more so than the vision loss.

                              Gina

                              Comment


                                #60
                                HUBBYMS =)

                                [quote=HubbyMS;1187494]Gina, this is where an active care partner is important. I have intervened or at the very least supported my hubby in obtaining the reports and the meaning and asking for interventions (treatment) for the cognitive aspects as well as psychotherapy.

                                Frankly, a well worded polite letter would be in order to the neuro psych at this point. It needs to state what was completed (with appreciation) and what is expected - therapy. If she/he continues to ignore it I would go to the Joint Commission. It sounds like denial of care.[Qoute]

                                HubbyMS,

                                Re reading my original post I realize it was not worded well.

                                The neuro psych did an awesome job reviewing the outcomes and was very clear on the interventions both psychotherapy, additional occupational therapy and physical therapy and medicines she felt would help.

                                The problem, shortly after she sent the report to my neuro, I lost my neuro (she left the practice), the neuro I am 'stuck' with (insurance) wouldn't even glance at the report (he considers them unnecessary) and did not write the referrals suggested.

                                To add to my frustration, my husbabnd won't look at the report either.

                                I admire you for the great support you are to your husband.
                                Unfortunately, not all spouses are as involved (I wonder if it's a female/nurturing thing?)

                                As I mentioned, my cognitive issues are worsening and they were poor last year at the time of testing.

                                I wont tell you how long it took to write this reply including multiple proof reads =).

                                My MS is quite advanced after 21 years and I am frustrated to tears most days as even on a 'good' day when I can figure out where I need help, I've no one to ask.

                                This became quite the monalogue. My apologies.

                                Best of luck and good health to you and your hubby.
                                Faith, Hope & Love
                                Gina
                                MS 1988 SPMS 2005

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