• Karen Martin posted an update 1 month, 1 week ago

    I just read Charlene’s column on small tasks that affect people with IPF. I have found that using a long-handled shoe horn to put on my shoes is a great help. Mine has a small hook on the back to help hold the shoe in place, as well as the horn that lets me slide my foot into the shoe. I usually brace my foot on my clothes hamper if I need to tie the shoes and that helps keep the SOB and dizziness minimal.
    Charlene also mentioned trying to describe SOB to people. I have heard it likened to running a race while breathing through a straw held in your mouth. Or, maybe on some days, more like a cocktail stirrer. Pretty accurate, I think. Karen

    • @casey

      Hi Karen,

      Thanks so much for reading and for reading my columns. A shoe horn is a great idea! I’d never thought of that, and actually had a giggle at a friend this past summer who introduced me to what that even was. However, I can see it being very effective for my struggles now. Thanks for sharing that tidbit of what helps you! We all have so much to learn from one another 🙂

      Also, regarding the “straw” test, I plan on doing that with a company this coming Friday to celebrate Rare Disease Day in California! I know RDD is actually on Feb 29th but the pharmaceutical company won’t be open on the Saturday so as part of an awareness initiative of what IPF feels like, we’re having everyone come down to the beach and try to walk fast/jog 200m with their nose plugged and through a straw. It sounds like there will be some video footage of it so I’ll make sure to pass that along! Stay tuned.

      Char.

      • I think the walk test should prove informative for the folks doing it.

        I also thought of a couple of other things that help some with my SOB. I use a “grabber” tool to pick things up off the floor or, if I really need to pick something up myself due to the size, I try to squat down rather than bend over. I learned the squatting trick when I had cataract surgery and was not allowed to bend over for several days afterward. Karen

        • All really good ideas Karen, thanks for sharing! I need to remember to squat to pick things up instead of bending over. Leaning forward when I am closer to the ground really makes me dizzy and feel unwell. This tip will help!

          I’ll keep the forums posted on how enlightening the walk test is. Should be be interesting for folks.
          Thanks, Char.

          • There is so much to figure out with this. Happy to be able to pass along a few tricks that might help. I will really be interested in the results of the walk test. Take care!

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