October 5, 2020 at 8:03 pm #25726Charlene MarshallKeymaster
We talk a lot about the benefits of exercising with pulmonary fibrosis in our forums community. That said, it’s something that many of us no longer enjoy and find difficult as our lungs continue to decline. I used to be very active, and loved participating in sports and various physical activities. However, I now have to force myself to exercise, often negotiating a reward of some type if I complete my exercise goals for a week. As one of our members recently shared, it’s hard to feel tangible benefits while exercising with poor lungs. Whether that be weight loss, muscle strength or improved breathing; when tangible benefits aren’t felt, it’s hard to feel motivated and the cycle of difficulty is just perpetuated.
I recently wrote an article on tips for making exercise easier as a patient living with IPF. While these are not endorsed by a physician, I have found them helpful in motivating me to exercise and making the activity a little less difficult.
I’m curious to hear your thoughts on this column and would love for you to share: what makes exercise easier for you as a patient living with IPF/PF?
October 6, 2020 at 11:35 am #25729Jofac O’HandlinParticipant
Hi, I tried replying to a previous thread on this subject but it didn’t join the thread. In view of that I will keep this brief. I was a runner / jogger over my life. Last year at the age of 77, and almost 6 years from diagnosis, I was obliged to give it up. The hills were hell, even just trying to walk hard.
My wife now takes responsiblity for dragging me out each evening to walk around our small town. A full lap takes a short hour involving 150 or so feet of rise and fall. Although we have many shorter versions of ou roite. As I am on OFEV only 100’s I do find that the hills cause pressure on the tummy(?) meaning that it is uncomfortable making it back home…. straight to the toilet!
We do things on the way around to make the walk interesting, but despite this I have reached the stage that if I can find an excuse (like rain) we do not go. I know that it is essential to keep going.
One must fight the feeling to become a ‘couch potatoe’, allowing tne breathing to get shallower and shallower., which it will do if not challenged.
Enough for the moment.
Regards all, Joe
October 7, 2020 at 8:04 am #25749Suzanne R BrennanParticipant
Charlene, I do know what you are saying. Can be so hard to exercise but I always think back to when my pulmonologist told me that if he had to choose (and he didn’t say he wanted to), he would choose me continuing to exercise over taking Esbriet as he felt it was that important.
I work out with a personal trainer twice a week, using FaceTime. I do some warm up exercises first and then he joins me and we lift weights but with frequent checking of O2 levels as well as heart rate so I rest quite a bit but still try to get in an hour. I use O2 at a high enough level to maintain mid-90’s even through the hardest sets. Also we don’t do another set until my heart rate comes down under 100. I tend to have higher heart rates than I used to so it’s important to rest enough between sets to ensure I am not taxing my heart too much.
I am always struck by how much better I feel and how much better I sleep afterwards. So even though hard, it is very rewarding and I will keep it up as long as I possibly can.
I also try to get in some recumbent indoor biking at least once per week as well as walking. I am so much slower at walking than I was before but still try to do it. It’s good prep for my six minute walk tests too.
October 7, 2020 at 8:15 am #25750Suzanne R BrennanParticipant
One additional thing is that I do a series of stretches before I even get out of bed each morning. I am still on my nighttime O2 while doing it. I do eight leg raises on each side, I do an exercise where I lift my knees, cross them over each other and rock from side to side, which loosens up my hips. I do a cross over leg exercise where I stay flat on my back but take first one leg and cross it over may body as low as I can for ten or so seconds and then the other. I do clam shells for eight on each side which also helps open the hips, and I stretch out as fully as I can with arms overhead and legs out straight, also for about ten seconds.
Then, I get out of bed, reach down towards my toes to let my back and hamstrings stretch, again for about ten seconds. I do eight arm circles, as wide as I can, eight forward shoulder rolls and finally eight neck rolls.
This all helps me to get out of bed and walk without being too sore and face the day! I have been doing this for well over a year after some physical therapy on my shoulders as the therapist said one reason for my shoulder issues was that my muscles were all so tight. She helped me to devise this program. While it sounds long, it really only takes about 5-7 minutes and is so well worth it!
October 8, 2020 at 10:55 am #25761
I am doing a “Trauma Sensitive Yoga” class 2x a week via Zoom. It’s perfect because it deals with emotional issues and techniques for dealing with them as well as gentle movement. I highly recommend online gentle or chair yoga classes with teachers trained in accessible yoga or trauma sensitive/informed. Great stuff! And singing!
October 8, 2020 at 10:57 am #25762
PS I was supposed to begin physiotherapy this week as part of palliative care but the covid-19 cases in England and especially where I live are out of control again. I’m pretty disappointed.
October 8, 2020 at 4:15 pm #25765
October 8, 2020 at 4:29 pm #25767Mark KoziolParticipant
Hello Wendy, it’s great you are doing yoga. This will help immensely with your breathing and help you stop over breathing as many of us do. Over breathing leads to our coughing many times. Keep up the good work, I know you have had some adversity in the past year and I hope this helps the process. Thank you for sharing and inspiring others. Breathe easy, Mark.
October 8, 2020 at 5:35 pm #25768
Thanks, Mark! I’ve been practicing yoga for almost all of my adult life and as my illness began to interfere with my ability to exercise, I was afraid I would have to give it up. It’s wonderful to have a modified practice.
October 8, 2020 at 5:37 pm #25769Mark KoziolParticipant
You are welcome Wendy! Keep up the work!
October 18, 2020 at 4:02 pm #25849Charlene MarshallKeymaster
Thanks so much for these great tips, Suzanne! I read your post – albeit awhile after you posted it, the weeks are getting away from me – right when I needed some motivation to exercise, thank you! I agree with you, can be tough but the benefits are so important. Kudos to you for working with a trainer on FaceTime and exercising so often, that will pay off I am sure. I’m glad to hear it helps you sleep too! This is something I’ve been struggling with the last few weeks so maybe getting back into a more consistent exercise routine will help. Thanks for the suggestions and for taking the time to write such a helpful and thorough reply! Be well.
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