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  • difficulty talking, confusion & disorientation

    Hi all!

    Another question ...

    Yesterday my husband had a really bad day - he felt absolutely horrible and was absolutely exhausted ...

    Sunday I started to notice that this was coming - he was starting to appear as though he was confused and disoriented ...

    Then yesterday while he was at work, he had a really rough day, was completely wiped out - and was having problems talking, he said his words would come out backwards, and that he was having problems thinking and organizing (which he is always fabulous at - great multi-tasker) ...

    And he becomes almost disoriented and confused ... and combined with his facial expressions and stuff, he reminds me of people and situations that I know of who are managing alzheimers ... not the regression in time, just the confusion and disorientation ...

    Does anyone have any insight? Does this happen to anyone else? Any idea why this happens and what is happening?

    Thank you!!!
    \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

  • #2
    Re: difficulty talking, confusion & disorientation

    I can not remember has he gone to Tufts yet? If so I would give a call to Dr. Maron and report this symptom to him.If his appoinment is coming I would still give a call.
    I can only say that before my myectomy I did a lot of things in reverse and sometimes my kids said I had my own language that no one knew. I think that sometimes enough o2 and nutrients in circulation do not get through , my feelings ,since things are much better after myectomy.I have not invented any new languages either. LOL.
    Good luck and keep us informed. Pam
    Dx @ 47 with HOCM & HF:11/00
    Guidant ICD:Mar.01, Recalled/replaced:6/05 w/ Medtronic device
    Lead failure,replaced 12/06.
    SF lead recall:07,extracted leads and new device 2012
    [email protected] Tufts, Boston:10/5/03; age 50. ( [email protected] 240 mmHg ++)
    Paroxysmal A-Fib: 06-07,2010 controlled w/sotalol dosing
    Genetic mutation 4/09, mother(d), brother, son, gene+
    Mother of 3, grandma of 3:Tim,27,Sarah,33w/6 y/o old Sophia, 5 y/o Jack, Laura 34, w/ 5 y/o old Benjamin

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    • #3
      Re: difficulty talking, confusion & disorientation

      Hi Pam ...

      Thanks for getting back to me ...

      Yes, he has already had his appointment at Tufts ...

      We gave a call last week, because they were supposed to evaluate and update meds, and he was starting to feel yucky last week ... but we haven't gotten a call back yet?

      Great thought on giving the Doc a call ~ I gave my husband Dr. Maron's pager number and asked him to page him today and update him on what is happening ... if he doesn't call him within a few, then I'll call myself ...

      Thank you
      \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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      • #4
        Re: difficulty talking, confusion & disorientation

        Brown Team,
        I dont know if you have Dr Marons direct pager number, but maybe you should also give Celest a call also. Shes great at giving Dr Maron his messages. I spoke with Dr Maron last night. I called him on Friday and he got back to me yesterday. Hes been very busy he said. Hes been going between two hospitals in Boston. I hope you and your husband can get some answers.

        Bryan

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        • #5
          Re: difficulty talking, confusion & disorientation

          Hi,
          If it were me, I would head to the emergency room asap. His symptoms could be from a stroke, which, while not a central part of HCM, can occur as the result of afib or various other possibilities. Why wait to find out. Strokes need immediate treatment. There is nothing to lose and everything to gain from going, if you ask me.
          Meanwhile, we'll be praying that all is well.
          Rhoda

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          • #6
            Re: difficulty talking, confusion & disorientation

            hi there ...

            bryan, yes we do have dr. maron's direct pager number ... we spoke with celest last thursday and hadn't heard back yet, that is why we were going to try paging him ...

            rhoda, first off, thanks for the prayers! so important! and secondly, i'll give my husband a call and see how he is feeling, and make the suggestion to go get checked out ...

            thanks for the comments!!! greatly appreciated!
            \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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            • #7
              Re: difficulty talking, confusion & disorientation

              Hi. First thing I thought was stroke too. Praying it isn't but please go to the ER to be sure.

              Reenie
              Reenie

              ****************
              Husband has HCM.
              3 kids - ages 23, 21, & 19. All presently clear of HCM.

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              • #8
                Re: difficulty talking, confusion & disorientation

                hi all ... thanks again for your continueing prayers, thoughts and comments!!!

                update!

                of course called lisa! she is great!!!

                my husband spoke with marty ... and then with lisa suggestion, i too called him to update him on a few more things that came out during my phone conversation with lisa ...

                so marty is in control (dr. maron from tufts for those that don't know him as marty yet) ... great doctor! he is going to be arranging appointments for my husband ... he does not think that (nor does lisa think that) what is happening with my husband is a direct affect or (if i remember correctly) having anything to do with warren's hcm - they think it is something else ...

                i will continue to keep all of you updated! i can't tell you how much it means to know that all of you are out there caring! thank you!
                \"Find rest, O my sould, in God alone; my hope comes from him. He alone is my rock and my salvation; he is my fortress, I will not be shaken.\" Psalm 62:5-6

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