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  • in reply to: How little other people understand what we go through #4046
    Rip Van Winkle
    Participant

    Hi,Katwoman57,

    You are so brave with this struggle. Of course, I know exactly what you are going through and you have my heartfelt sympathy. I have just passed the 9th anniversary of being unable to swallow, so I thought I’d share with you some the ways I cope with what you described. You are so fortunate you can still swallow, and even though it is difficult, your swallowing muscles are being exercised when you use them.

    In my case, I use a G-tube (gastrostomy tube) to take all my food, which is, obviously, liquid. It is called Boost Plus, and it is by prescription from my physician and covered by insurance.

    With respect to drinking, as I am unable to swallow (the muscles at the base of my tongue that govern swallowing were fried in the course of radiation for Tonsil Cancer), I must let gravity do the work. I take a breath, take a sip, tip my head back, and let the liquid (coffee, water, tea, scotch, vodka) flow down. But the key thing I must remember is to take that breath and hold it before I take the sip. It is vitally important to take that breath. Otherwise I have that dreadfully frightening reaction you described.Sometimes I forget to take the breath, and I really have to work to get some air in in order to resume breathing.

    Once I have quote swallowed unquote (I’m not really swallowing), I then let out the breath and it moves what little bits of liquid still remain in my esophagus. It sounds easy but took me quite some time to figure it out.

    I wish you the best, my dear, and hope this has been helpful. Keep on posting, and we’ll stay in touch that way.

    Rip Van Winkle
    Participant

    Hi, Tonick3540,

    Glad you found this forum, and are sharing your experiences.

    I totally agree with you about well-meaning friends saying “be positive,” when we know there is no amount of positivity that will reverse or ameliorate our respective conditions. But that’s what friends are supposed to do: try to make us feel better. That they are there is a good thing, though, and for that we should be grateful.

    If you enjoy reading, here are some authors whose works are real page turners, and have helped me enormously to escape: Ken Follett. Nelson de Mille, Alan Furst.

    To this I add be strong, my friend.

    Rip

    in reply to: How little other people understand what we go through #3581
    Rip Van Winkle
    Participant

    Hello, Elizabeth,

    So sorry about your friend. While there are lots of things to do that don’t directly involve eating, as so many people never tire of telling me as if it would assuage my unhappiness, it is the indirect effect of chronic dysphagia that is so very trying. Snacks, having a nice cold drink, seeing those luscious pizza commercials with the dripping cheese and dipping sauces, watching movies with the meal scenes, attending dinner parties, and all day outings without a place to use one’s tube. Then there are the insidious side-effects—in my case, loss of the sense of taste and vastly diminished saliva production which results in not being able to exercise vigorously.

    But I do watch movies at home—hurray for cable TV—I read a lot, and I take half day trips to museums or to play golf. Of course, it’s when it comes time to have a bite at the museum cafe or join my golf friends in the grill room for lunch that the CD is particularly odious. The loss of social interactions in those instances just adds to the depression one feels with CD. So I abide.

    The best you can do for your friend is be positive, but never downplay his condition in an effort to make it less onerous. CD is undoubtedly the worst infirmity I can imagine. I met a guy who was a quadriplegic and had CD, and he said the CD was infinitely worse than his loss of mobility. In short, no amount of lip stick will make this pig pretty.

    Rip

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