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Is 98% of HCM half mental?

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  • Is 98% of HCM half mental?

    I find the mind body connection to be REALLY tricky. Just the top thread here, good or bad HCM day, shows how easy it can be to make the disease a scapegoat for anytime we feel bad. I'm not saying it isn't responsible, but do we really know? Of course we don't know for sure. A good example is my intolerance for exercise lately - is it due to increasing HCM symptoms, or just being out of shape? The fact that I fainted while running may be a good indicator it's the HCM. But just how far do I carry that? As I exercise less, I get more out of shape and can do less and less. I don't really have a conclusion, just an observation. But one thing is that the key for us has to be keeping up the low intensity exercise, don't you think? As opposed to becoming a couch potato and blaming the condition?
    First major HCM symptoms at age 50
    ICD 6/06

  • #2
    Re: Is 98% of HCM half mental?

    Your point is well expressed and well taken. With HCM as well as a few other conditions, low intensity work outs are best. The frequency is important to stay fit. it is very easy for anyone to get down and out and use the disease as a scape goat for behavior.

    Any chronic disease is hard to live with and you have good and bad days. The most imporatant part to remember is :

    1. you aren't alone, several feel as you do
    2. you have to keep yourself healthy to feel good
    3. you have to accept your disease and work with your body, not against it
    4. life is what you make it

    To better days and more that make you feel good. Take care.

    God Bless!
    Sherry
    tommysgirl wishes you a blessed day with many laughs and smiles along the way!

    Wife of Tommy Hall passed 9/22/07
    HOCM, (AA x2, CABG, RFA, Myectomy x2, Maze)
    Tomy 13
    Amber 25
    grandchildren Aiden 6, Maddie 4

    Comment


    • #3
      Re: Is 98% of HCM half mental?

      Mental attitude effects how we react to the effects of our disease and/or diseaes processes. Positively and negatively depending on whether we see ourselves as victims, as challenged, as defeated, or as warriors etc,etc. The way we respond or any one responds to a different situation in our lives is what determines who we are and how we mentally CHOOSE to see ourselves. YES, I can be having a bad day with my disease and answer to the ???? positively, that I'm having a bad Day. But, I can continue to do all I can for myself to improve my day and my situation. (LOOK for the Rainbow in the middle of the STORM). But, there are those who will also look for the reason to make a sunny day into a problem. The thing you look for and what you seek is what you will find.....
      AS fo ME AND MINE we are chasing rainbows!!!


      Billy Berry
      Be not only GOOD; But, BE GOOD for SOMETHING!

      Comment


      • #4
        Re: Is 98% of HCM half mental?

        Originally posted by billyberry
        Mental attitude effects how we react to the effects of our disease and/or diseaes processes. Positively and negatively depending on whether we see ourselves as victims, as challenged, as defeated, or as warriors etc,etc. The way we respond or any one responds to a different situation in our lives is what determines who we are and how we mentally CHOOSE to see ourselves. YES, I can be having a bad day with my disease and answer to the ???? positively, that I'm having a bad Day. But, I can continue to do all I can for myself to improve my day and my situation. (LOOK for the Rainbow in the middle of the STORM). But, there are those who will also look for the reason to make a sunny day into a problem. The thing you look for and what you seek is what you will find.....
        AS fo ME AND MINE we are chasing rainbows!!!


        Billy Berry
        CHASE the RAINBOWS.
        Be not only GOOD; But, BE GOOD for SOMETHING!

        Comment


        • #5
          Re: Is 98% of HCM half mental?

          Hey Billy,
          Is 98% of HCM half mental? Of course not. It’s the other 2% that is half mental. This half is cardiac – – – what were you thinking?

          If 98% of HCM is half of something, then the whole thing must be 196% - and boy, some days it sure seems that way. I handle my bad days – and today is a doozy – by thinking I have them so I can recognize the good days. It helps.

          I’m still hung up on this new math of yours, where 98% is half, and the other 2% is the other half. Gee – what ever happened to, ‘one for me and one for you’? My friend, chase all the rainbows you want, but if you ever find the pot of gold at the end – remember that good old, time worn dictum, “One for me and one for you.”
          Burt

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          • #6
            Re: Is 98% of HCM half mental?

            Oops, I got it wrong.

            Ninety percent of this game is mental, and the other half is physical.

            * A variant of this:"Ninety percent of this game is half mental" is also attributed to Philadelphia Philles manager Danny Ozark
            First major HCM symptoms at age 50
            ICD 6/06

            Comment


            • #7
              Re: Is 98% of HCM half mental?

              Well

              I can tell you sometimes I feel like a baby not being able to handle things but i still push myself to do, I try to take care of myself and eat right and good lord knows i get exercise between taking care of my dad and my family, I'm bot a lazy person and i don't sit around feeling sorry for myself. I go on with life the best I can and some days i do more then other days and I have adjusted myself to this but sometimes it is hard. I want to get up and do things i use to, but it will have to wait for my new heart if that day ever comes, for me there is a maybe 2% mental thing that is stopping me from doing things i want to do and 98% physically telling me I can't mainly my breathing stops me and the weakness i feel in my arms and legs and the pain

              Shirley
              Diagnosed 2003
              Myectomy 2-23-2004
              Husband: Ken
              Son: John diagnosed 2004
              Daughter: Janet (free of HCM)

              Grandchildren: Drew 15,Aaron 13,Karen 9,Connor 9

              Comment


              • #8
                Re: Is 98% of HCM half mental?

                Spalding, this is something that's on my mind a great deal lately.

                I have always had some measure of anxiety about my health issues, but it rarely affected me to any significant degree.

                Then I found out a year ago that a transplant was in my future; I'm on the waiting list but have been inactive since March because I don't feel my current condition merits a transplant at this moment in time. Ever since I found out about the eventual need for a transplant, I have seen my anxiety -- and physical issues that I believe stem from it -- increase tremendously. I recently started having panic attacks, and some of the symptoms mirror those of some HCM symptoms (tight feeling in chest, breathing issues, etc.)

                With regard to exercise, I am definitely out of shape and have wondered if my V02max results might improve a bit if I were more physically active. I had an ICD/pacemaker implanted last year, and it has helped me tremendously to better tolerate physical exertion, so there is really no reason why I can't exercise.

                Wish I had more answers for you, but I am glad you gave me an avenue to express my own problems.

                -- Tim
                Life is a banquet...and I got botulism! -- Me

                If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                Comment


                • #9
                  Re: Is 98% of HCM half mental?

                  Spalding,

                  I’m so glad you brought this issue up. I firmly believe that most of the symptoms are indeed the result of us thinking too much about our condition. I was diagnosed 18 months ago. Up until the day I went into to the hospital I had never had a single symptom. For about the first 3 months after being diagnosed I was completely terrified (as I’m sure most of us were) and was much more symptomatic. I was very nervous about even getting my heart rate up to 100! Being as involved in sports and exercise as I’ve been throughout my entire life, this was not an option. With the guidance of all of my doctors, I have worked myself back into being able to play basketball, tennis, mountain biking, and jogging. (As I type this I should knock on wood), but since I’ve had the courage to do these things again I’ve noticed that:
                  1. My anxiety level is much lower
                  2. my physical health is very good again
                  3. I live pretty much symptom free

                  Sorry for making a short story long, but I just wanted to share my personal experience. I think there are many people that don’t realize that their physical health and mental health are affected so much by each other. Thanks for bringing this topic up and kudos for the baseball reference.

                  BlueDevil,
                  I hope things really start getting better for you. I've been quietly following your story due to us joining at roughly the same time and are roughly the same age.

                  Peace,

                  Nick

                  Comment


                  • #10
                    Re: Is 98% of HCM half mental?

                    Hi all,
                    I keep hearing that some people are thrown for a loop upon learning they have HCM. With me it was just the opposite. I finally had an explanation for all the symptoms I was having. In December 2004 I was hospitalized twice with symptoms that I couldn’t deal with. During the second visit I went to wash up and barely made it back to the bed. I rang for the nurse and asked her to take my vitals. Things came in snippets after that, but I do remember my doctor giving me a shot – I think I remember it going into my chest, but I’m far from sure. In any case I truly believe he saved my life – beside all the other cardiologists just trying to talk me out of having HCM.

                    Now-a-days I have a lot more to deal with then HCM, even though I still have frequent symptoms – I had to sit down twice this morning while getting dressed. I am also on dialysis with a poor fistula, but I think I will ride with it rather then getting another one that would have to be replaced every 18 months or so. My cardiologist wants them to take off an additional 20 pounds of fluid to help get rid of my CHF, but the most they can take off is about three kilos before it wipes me out for a couple of days – and of course it’s all back by the next treatment – every other day. Saturday morning they took off four kilos and I’ve been laid up the whole weekend as a result.

                    Then of course there’s the diabetes and the insulin pump. It seems to be doing OK for now, but I’m not down to a good range yet – just a couple of hundred points below where I used to be. They want to take me down slowly.

                    Then of course there’s the CHF cough which is pretty relentless. The only cure would be getting the fluid out of my lungs and cardiac areas – but that means higher extraction rates during dialysis, and my body just can’t tolerate it. As my cardiologist explained to me, the body is divided up into sections – the blood, the lungs, the heart, the legs, the trunk, etc. – and when you take fluid out of the blood it takes time for the other segments to give up their excess fluids. All I can do is take off what the body will allow, and cut down my drinking to try to not gain it all right back. Of course my HCM does not like my appearing to be dehydrated – and round and round we go.

                    I know it will all end someday – but I’m willing to wait another thirty years or so. (That would make me one hundred thirty four – a nice age.)
                    Burt

                    Comment


                    • #11
                      Re: Is 98% of HCM half mental?

                      Great responses here!

                      BlueDevil - An ICD increased your exercise tolerance? That's good news to me - I haven't really noticed any difference, but I've only had it a month and I am going back to exercise very slowly.

                      nzelich, you are a brave man, doing all those HCM no-nos like basketball and jogging. Jogging is what landed me in the hospital, so I won't be doing that again anytime soon. So I better stay out of inner cities where I may have to make a run for it!

                      tommysgirl, thanks for your kind words.

                      And Burton, you are using this thread's dubious math again. You are 104 years old?
                      First major HCM symptoms at age 50
                      ICD 6/06

                      Comment


                      • #12
                        Re: Is 98% of HCM half mental?

                        Originally posted by Spalding
                        BlueDevil - An ICD increased your exercise tolerance? That's good news to me - I haven't really noticed any difference, but I've only had it a month and I am going back to exercise very slowly.
                        Well, my situation sounds a bit different from yours. The ICD/pacemaker I have paces both ventricles (bi-v pacing). I can't explain the mechanics, so maybe Lisa can step in and explain this better, as she was present during the echo that led to my getting the device.

                        Before the device, I could walk fairly well for a few blocks or so as long as the path was flat. My main symptoms were aching across my upper back and feeling out of breath. I lived in San Francisco for eight years before moving to Minnesota two years ago, and I remember what it was like walking to and from the bus stop every day for my work commute. The route wasn't completely flat, so every morning after reaching the stop, I'd stand there and breathe heavily and deeply to alleviate the ache in my back. (I don't know that that ever did any good, to be quite honest.) I would recover fairly quickly, usually before the bus got there. Some days were better, some were worse.

                        Since the device was implanted this past October, I have been able to walk pretty briskly for a longer distance than I could before. I got a guest pass for a local gym and went every day for a week; I rode a recumbent exercise bike for at least 30 minutes and as long as 45 minutes on a couple occasions. Last week I was in St. Louis in the middle of their heat wave, walking around outside every day. We went to the zoo, which isn't exactly flat, and I did just fine.

                        This is not to say I'm "cured" or anything, but I do feel significantly better than I did pre-device. People who know me say my color is improved, and they notice I have less difficulty than I did before.

                        Sorry for the length (and hope this helps...)

                        -- Tim
                        Life is a banquet...and I got botulism! -- Me

                        If time flies when you're having fun, will I age faster at Disneyland? -- Joel Perry

                        Comment


                        • #13
                          Re: Is 98% of HCM half mental?

                          Glad to hear you're better, BlueDevil. I know what you mean about hills, they really get to me. I hope to get a lot more details about how my ICD works at my next checkup in September. I just know it follows the atrium and manipulates the ventricle to try to decrease gradient.
                          First major HCM symptoms at age 50
                          ICD 6/06

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