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    • #27847
      Christie
      Participant

      Breathing exercises are an important part of pulmonary rehab. These exercises help keep the lungs healthy and keep the muscles we use to breathe properly in good shape. Breathing exercises have other benefits too, like resetting the autonomic nervous system, and reducing anxiety. In addition to our pulmonary rehab exercises (some of which you can read about here), there are breathing patterns and practices that help to reduce stress and calm the body.

      While there is some overlap in the exercises, stress-reducing techniques often focus on controlled, timed inhalations and exhalations. Some of them ask you to hold your breath in between. If you have PF, is that type of exercise helpful or harmful to your stress levels?

      Which breathing exercises have you tried in pulmonary rehab? Have you noticed if they also help with stress? Alternatively, have you tried breathing techniques to reduce stress and noticed that they help with your PF symptoms or O2 saturaions?

      Let’s discuss 🙂

    • #27864
      Janey Henderson
      Participant

      I’m about to start physio for this so very interested to read the responses.

    • #27865
      Don Kauffman
      Participant

      @christie-patient

      Hi Christie,  In response to your inquiry of different breathing exercises. I had a therapist that  offered a unique approach along with physical workouts and that was the HARMONICA ! I also received a song book with a variety of songs ;I.E Marines Hymn; Christmas songs …and Mary Had A Little Lamb, to mention a few. Each note had a  BLOW or DRAW indicator(each hole has a # mark..) I have to admit it was fun practicing as she expected a NEW song learned every training day.  I’ll never make it on Americas Got Talent but it took my mind off the reason I was there.

      Best wishes,                     Don Kauffman

       

      • #27875
        Christie
        Participant

        @4sailfish Don, I LOVE THAT! That’s such a good idea, and a unique way to exercise the lungs! It would be a good distraction too, I imagine to take up a new hobby that you are learning while also helping your breathing. Thank you for sharing!

    • #27869
      Karen Martin
      Participant

      I find routines that ask you to inhale for a “deep breath” make me anxious.  I have trouble doing that.  I also have trouble holding it for extended periods at a time.  I don’t know if this is just my anxiety about being able to perform these tasks or actually my breathing ability (or lack of).  I also found the harmonica exercise interesting and helpful, though.  Maybe I was distracted by the music itself?  I have always loved to sing and find I can still do that most days, so maybe the pressure on me to perform specific exercises just makes me self-conscious.   I wonder if anyone else has experienced that.

      • #27876
        Christie
        Participant

        @casey Karen, I could definitely see that causing anxiety. My mom struggled with that too, and when I was trying to do breathing exercises with her she would get frustrated (self-conscious, perhaps, but definitely scared about her waning ability). I think the exercises that distract your mind a bit while also working your lungs are really great. Today is the first time I’ve heard about the harmonica thing, but I think that is genius! Singing too!

    • #27872
      conni
      Participant

      My acupuncturist suggested Che hung similar to tai chi great tool. You can find videos on line I have 2 I like one is a full hour the other 20 minutes these are calming not just breathing. I also like a pranayama breathing class it should not make you anxious you should be comfortable  with the inhale exhale at your own pace. There is no right or wrong. Some days I am better than other🥲but I do feel energized when I am done I actually find the pulmonary rehab exercises the most boring and will find any excuse,cleaning the litter box😬even. What I am curious about is how often you do all the exercises. Breathing treamill,etc.

      • #27877
        Christie
        Participant

        @connib Conni, thanks for sharing about Che Hung. I wonder, do you know if it is similar to Qi Gong? I have done that before and found it very helpful for anxiety and as a sort of systemic reset, energetically speaking. Breathing is a big component of Qi Gong. I will have to give Che Hung a try!

        I am a caregiver so I don’t have personal experience with how breathing exercises feel on PF lungs, but I am interested in hearing how often people do their breathing exercises and how much benefit they feel from them.

    • #27878
      conni
      Participant

      Same exercise Che ghung or qu gong ,many different spellings 😬 I also Find I am more relaxed and energetic. It also seems to help if I am having a bad coughing spell. Acupuncture also really helps me relax and depending on where she sticks me…can super energize me, very weird. I know you are supposed to do the pulmonary rehab exercises daily,I admit I do not. Sometimes the fatigue from this illness makes me really have to fight through mentally.

      • #27889
        Christie
        Participant

        @connib Very cool! I do find it to be really centering, though kind of a little silly feeling at first. I’m all about approaching things with a blend of Eastern medicine and Western. Everything is connected (physically, energetically, etc) and I think sometimes doctors forget that when they get so deep into their specialty.

    • #27883
      Karen Martin
      Participant

      Christie, I think perhaps fear is also a factor for me.  When I feel myself more often SOB, I wonder if it is my “fault” for doing/not doing something or if it is a sign that things are deteriorating.  Then, like an ostrich, I just want to stick my head in the sand!

      I like Conni’s comment about doing anything other than breathing exercises, even cleaning the litter box!  I can relate and I do have a cat!  I will also have to look into the che ghung idea.  Even though there has been extensive discussion on this forum about the life expectancy misconception most of us are handed at diagnosis, as I approach my fourth year, I find myself wondering.

      • #27891
        Christie
        Participant

        @casey Karen, I totally get that. I can see how it could make you feel like something is wrong with you or that you are doing something wrong. Both of those feelings are hard to handle when you already are struggling! But I do agree that doing sort of real-life things that exercise your body and lungs is good. And practicing things like a harmonica, singing, or other wind instruments could be both helpful and fulfilling in other ways.

        As far as life expectancy, it’s just such a tricky thing to pin down. When the ILD team started looking at my mom’s medical records, they could see evidence of early ILD on chest Xrays from 2009. She had a brief episode of Afib back then, but she wasn’t really symptomatic with ILD until maybe 2013/14? She wasn’t diagnosed with IPF until July of 2019, and by December of that year she was on her way out the door (but still here, thank you lung transplant!!). It’s hard for me to say whether a prognosis like that is helpful or harmful with this disease since every case seems to be so different, and diagnosis can be difficult to achieve early on.

    • #27913
      Wendy Dirks
      Participant

      @christie-patient

      Hi, Christie – I do yoga via Zoom regularly and meditate most days. I have to use oxygen when I’m doing anything that requires breath regulation or I begin coughing, which is extremely stressful. While doing yoga, I use my oxygen at the recommended 4 litres per minute, but when meditating, only 1 lpm is necessary. As long as I’m not coughing, both are incredibly good at relieving stress.

      • #27925
        Christie
        Participant

        @wendy-dirks Hi Wendy,

        Thanks for sharing your routine. I am happy to hear that it does relieve stress for you to do yoga and meditation! I know that breath regulation is often very difficult with PF, especially for those who suffer from “the cough”. My mom really struggled with this when she was getting sicker before her transplant, and it was hard for her to practice those things without feeling anxious. It seems like that is kind of the general consensus here, but I am glad that using more oxygen when you do these activities helps reduce the cough so that you can benefit from the exercises… both for stress and for PF rehab purposes 🙂

        Can I ask what kind of yoga you do? I tried to get my mom into seated yoga when she was recovering from her transplant, but she wasn’t really into it. I do lots of Hatha or restorative yoga when I feel stressed (no standing poses, just long stretches and floor movements), and find that it helps me get centered without getting my heart rate up.

        Christie

        • #27927
          Wendy Dirks
          Participant

          Hi, Christie – I have done yoga all of my adult life so adjusting my practice as my illness has progressed has been an ongoing process. I found my current teacher before the pandemic and attended in person gentle chair yoga classes. After the pandemic started, she (Sally Roach, here in the UK) began teaching Trauma Sensitive Yoga via Zoom. I’m a retired scientist, so I really love the underlying principles of this approach and have found it incredibly helpful as a person with a chronic illness. It’s based on Stephen Porges’ Polyvagal Theory. One of the basic principles is to honour your body’s needs and work sitting down OR standing up – whatever works for you. On good days, I am able to do the movements standing, but on days when I’m suffering a lot of fatigue, I stay seated. I can’t do yoga on the floor anymore – it’s too exhausting to get up once I’m down!

        • #27938
          Christie
          Participant

          @wendy-dirks Trauma Sensitive Yoga sounds amazing. I think if I were to ever pursue yoga teacher training (I have considered it) I would want to focus my efforts in that direction. It’s such an amazing tool and incorporating some psychological training into it sounds right up my alley of interest. In fact, looking through the Polyvagal Institute website right now has me wanting to buy Dr. Porges’ book and read more on this theory. A lot of what I’m seeing makes sense to me. Thanks for sharing! I’m glad that it works for you and that you are able to modify by how you feel each day.

        • #27941
          Wendy Dirks
          Participant

          Hi, Christie – I bought Dr Porges’ “big book” but I haven’t read it yet. Over Christmas I read “The Pocket Guide to Polyvagal Theory: The Transformative Power of Feeling Safe” and it was absolutely life transforming. I highly recommend it!

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