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    • #16625

      On this site I often talk about things that bring me joy, such as my crafting hobbies and love of traveling. I’ve also mentioned that one of my biggest fears after being diagnosed with idiopathic pulmonary fibrosis (IPF) in spring of 2016 was losing my ability to travel. Thankfully, I am still able to travel, albeit with some precautions and preparations in place to ensure my safety. However, when I started using supplemental oxygen, I didn’t know if I’d still be able to do this activity that brought me so much joy.

      Sometimes the fear of not being able to do what we love as a result of requiring supplemental oxygen for IPF can be crippling, can’t it?

      Recently I was messaging directly with a new member of our forums, who has discovered a lot of enjoyment from a relatively new hobby of his, which is the sport of golfing. He says both he and his wife now love to golf! He is new to the forum, and I don’t believe uses oxygen yet, but likely will need to soon. With his permission, I wanted to share this topic and discuss the fear that comes with having to give up hobbies we enjoy has a result of using supplemental oxygen.

      Has anyone tried golfing with 02, and if so: what accommodations have you made to continue being able to do this sport?

      Since IPF can “rob” us of so many joys in our lives, and make even the most basic of activities difficult; it is so important that we hang onto the things we love to do. Even if it means making accommodations to ensure we can continue them!

      What types of hobbies/sports/activities have you been able to make accommodations for, despite using oxygen, and maintain throughout your journey with IPF/PF?

       

    • #16872

      Hi all, I’m new on site, 58 y old, living in France (near Paris), IPF diagnosed in Jan 2017, taking OFEV, no O² for the moment.

      Before IPF, I was so focused on my job that I didn’t practice any sport or physical exercise … I understand quickly that exercising is key for us (if we are able to) in order to fight against disease and to slow down IPF progression. Looking for a relevant activity, I decided to try Golf. Knowing that it can be really time consuming I proposed it to my wife, and we started together lessons in May 2017. We quickly realized that: firstly, it’s a real physically demanding sport, secondly that golf is very good for IPF, and thirdly that we are addict …

      It is now a real passion, shared with my beloved wife, we now organize our trips trying to include Golf, and I try to practice at least once or twice a week. However, I know that someday (soon) I’m going to need oxygen … I’m not afraid about it, just would like to be prepared “technically”, and motivated to practice Golf with it … but I’m totally ignorant on this subject.

      I’m interested in your experiences … How are you golfing? what type of O² equipment? In one extent this also apply to other outdoor activities like running or cycling … I’ve seen last week on Facebook a good example of woman running half marathon with Inogen3 and extra batteries in her pet jogger. This is exactly kind of examples, experiences I am expecting.

      A big thank you for your help

      Jean-Michel

       

       

      • #16993
        Ken Jenkinson
        Participant

        Hello all – I was interested to read your article on playing golf with supplemental oxygen.I have in fact been playing golf for 2yrs using oxygen albeit on a 9 hole academy course.I have IPA and wear a canister back pack which does appear quite novel.Although strange at first you just need to adapt your swing to suit and will find hardly any difference in your game.I also participate in circuit training twice a weak with my oxygen back pack.I must say since the new year I have developed pneumonia and a pulmonary embolism which has put payed to my activities hopefully just short term.I do hope my experience will be helpful and please give it a try and be careful.                                                                         Regards Ken Jenkinson ( England)

         

         

        • #17002

          Hi Ken,

          Wow, thank you so much for your response and offering up how you manage to play golf with oxygen. I know Jean Michel and Patsy will appreciate hearing from you, as I do. Glad you’ve adjusted to the sport and circuit training with oxygen on your back, that is amazing, good for you!

          I hope the pneumonia clears up for you soon and that you’re restored fully to continue enjoying your exercise activities. Take care and thanks again for writing!
          Charlene.

    • #16929

      So glad you chose to share this with the forums Jean-Michel. I know you’re eager to strike up a conversation about golf and supplemental oxygen use, and I can completely understand why 🙂

      I love your third realization that you’re both golf addicts, this made me laugh out loud and have an overwhelming sense of happiness for both you and your wife. Isn’t it great when you discover not only something new you can do, but something you thoroughly enjoy as well?

      While I don’t have experience golfing with oxygen, I have been using supplemental 02 for 2 years now (well, as of this summer) and totally think you could manage playing golf while on oxygen. If I am envisioning it right, you could probably use a small tank (size D) and strap it on your back. They aren’t very heavy and depending on your litres per minute (LPM) it would likely last through a round of golf, depending on whether you play 9 or 18 holes. You could even get a cart to bring an extra tank with you to switch out if needed. Oxygen can be very portable, if the provider is willing to “meet you halfway” when you talk about the activities you’d like to still be able to do while using oxygen. I have both tanks and a concentrator. While my concentrator lasts longer, is approved to fly on a plane and allows me to change my LPM easier; it is heavy and I can’t carry it for long without getting short of breath. That is the only complaint I have about it, and often when I am doing a lot of walking will pull my E tank (big one) along side me, or carry the smaller tanks on my back. You probably could even pull an E tank with you during golf actually, you just might need a hand with your clubs. The concentrator I have is the Phillips Respironics SimplyGo machine. Not sure if this helps any? While I’m not a golfer (my brother is though!) I can envision what it would be like with 02 and do indeed think you could maintain your beloved sport, especially for the first little while on oxygen even.

      Curious to hear from others on the subject if you have some insight to share? I know Jean-Michel would really appreciate it too 🙂

      Thanks in advance and chat soon,
      Charlene.

    • #16942
      Patsy
      Participant

      Hi @jeanmichelf, and Charlene,
      Thank you for bringing up this topic as those of us with this disease need to find lots of different ways we can still participate in sports with IPF.

      I was diagnosed with IPF in Sept 2015 and started using O2 in 2016. Prior to that I had been an avid golfer and grieved at the thought I could no longer play along with the other classes I regularly participated in, like yoga and zumba. Very early on, I asked about how I could be active with O2 and was advised by my oxygen supplier that I had options that Medicare would pay for. When you play golf here in California, the golf pro immediately sees you have special needs when you are wearing a cannula and carrying a tank. They offered a discounted cart that has a flag on it so the golf Marshall knows you are disabled. They allowed me to drive the car off the cart path and up to but not on the green. My own personal preference would not be to wear my backpack but it was with me in the cart. Somehow its weight and movement would alter my shot. I’d take it off, leave it in the cart parked close by, take the shot and put my O2 back on. It really allowed me to continue playing for at least 9 holes for a glorious day of great fresh air and exercise.  It’s a little different at the range or doing pitch and putt, but still very doable. I hope this helps others and maybe encourage those who are looking for a low key activity they can do while they are managing IPF.
      Patsy

      • This reply was modified 1 year, 5 months ago by Charlene Marshall. Reason: formatting, tagging
    • #16952

      Hi @patsyarchibald,

      Thank you so much for contributing to this discussion thread. I know it will really mean a lot to @jeanmichelf, and as you can tell – I am not a golfer, I didn’t even think about the weight of an 02 backpack affecting your shot or swing! Good to know in future, if I ever try out this wonderful sport 🙂

      Your experience has been very helpful to read, and no doubt Jean-Michel will find it informative too. I’m sure he will respond as soon as he can, as he and his wife have recently discovered a passion for golf. Glad you play too!

      Thanks again for writing!
      Charlene.

    • #16961

      @patsyarchibald a big warm thank you sharing your experience …

      This is the first testimony that Golfing is possible and it really reassures me a lot. Since my diagnosis, I decided to fight against all the handicaps caused by IPF, and to continue the golf as long as possible will be, I know, not only great fun, but also the time gained on the disease. I always have in mind at the first tee that a course played is a additional day to my life.
      I’m impressed by conditions offered by California to you … we have a lot to learn here in France about it! I will look at it closely If we can adapt french minds and help other patients 🙂

      If I understand correctly you are using O² bottles, I understand about the weight on the back … and the need for the car. What about portable concentrator ? any clue about it ?
      I’m afraid I have a lot of other questions (sorry) : Are you still playing ? often ? do you know other IPF players ? What is you index ? Which Golf Course are you a member ?

      A big thank you also to @charlene-marshall for supporting me (us) on this topic

      Jean-Michel

    • #16967
      Karl
      Participant

      Diet and exercise. How many times do we hear that phrase as a disease prevention for all kinds of diseases, albeit imperfect. Regular walking is great. Walking and muscle building exercise is even better, including pursed lip and deep breathing exercises to build all the muscles that control breathing. Never too late to start, just don’t do nothing.

      • #16975

        Completely agree with those words of wisdom @karl. Doing nothing can be quite detrimental for us, and figuring out what works best for our condition can be a work in progress, but so important. I am in the process of re-evaluating what exercise equipment I want to get in my basement next, other than the treadmill. I am still walking as much as I can but would like to pair it with something else, and I think a recumbent bike will help build the muscles in my legs more. They’ve never quite been the same since my long hospitalization in May 2017 after I had an acute exacerbation.

        Really glad this discussion is up and going a bit @jeanmichelf, I know it was important to you! Thanks again Patsy for your contributions as well.

        Happy Friday to all!
        Charlene.

    • #16992
      Patsy
      Participant

      Hi all,

      Karl, thanks for your imput. I totally agree with you.  I completed pulmonary rehab soon after my diagnosis and most of what we learned included diet and exercise. It’s a lifestyle that can be obtained if we can realize how making even small attempts at exercise increases quality of life. And the equipment you want to use Charlene, are exactly what they had us using. I occasionally work with small weights too.

      Jean-Michel, I appreciate your enthusiasm and how you and your wife are enjoying golf. I don’t play with other PF patients. But my golf buddies are very supportive of my efforts when I want to play. A portable concentrator is perfect to use on the course. I still have a hard time with the cannula and the hose so I still choose to take it off when I take a shot. Maybe it’s more comfortable for me since I’d played long before I got sick. Here where I live, there are many municipal courses from which to choose and like to visit them all for variety. I play for fun & not very seriously. I’m also a fair weather player, so the last time I played was in October. When the sun comes back out I’ll play 9 holes maybe 3 or 4 times through the summer. I’ll go to the driving range and practise my putting more often. If you can walk the course, I’d recommend that. But I’ve progressed a little bit with this disease and it’s just not in the cards for me. So, I rent a golf cart and still enjoy the ride!!

      Patsy

    • #17001

      Hi Patsy,

      Thanks so much for sharing a little bit more of your experience with us. I know @jeanmichelf will be particularly happy to hear your answers to his additional questions. Hmm, you both might have convinced me to try my round at your beloved sport 🙂

      I am really glad to hear that you also have had a positive experience with pulmonary rehab. I did as well, and hope to re-engage in another session soon. Then if I have the equipment to continue the program at home, that will be even more helpful.

      Thanks again for sharing and so glad you can continue to enjoy this sport. I hope the weather warms up soon so everyone can be back out enjoying the sun on the course.

      Cheers,
      Charlene.

    • #17006

      Dear all,
      Thank you for your contribution. It is very comforting to feel people close to me on this subject so dear to me. I do appreciate your support, your advices, your experiences. I can tell you that it helps me to prepare to the next stage of the disease and it also sthrengthens me in the way I have taken to fight with physical exercise.
      Take Care

    • #17007

      Karl, fully agree with your words. It is so obvious when you started to apply this disciplin … But so difficult to start for many patients. I’m questionning myself why ? and I didn’t find the answer … I’m probably too inexperienced because of my recent diagnosis. But I would like to help others. Likewise I have the strong feeling that community is less advanced here in France on this topics, than you are in US. I would like to contribute, to improve exchanges between the two communities, even if language is a barrier difficult to cross.

    • #17008

      @patsyarchibald, thank you again for your detailed explanations. It is important for me to understand technical details and to visualize 🙂

    • #17033
      Karl
      Participant

      Hey @Charlene, I’m probably telling you what you already know, but if you want to add to your treadmill exercise, I suggest any equipment that works on the muscle group that builds breathing as a primary objective; diaphragm, pectorals, back and chest. Working the entire body is great if you can do it because strengthening all of the primary muscles support each other. Walking is great. Keep it up. The recumbant bicycle will build upper thigh and stamina. For me it’s very tiring when I start the exercise, but gets easier as the minutes go by, like all exercise. Work any muscle group you can. Even lift light free weights, increasing the load very gradually. Repetions of each exercise and repeating muscle groups every other day to let the muscles rest and adjust is what works. Just do what you can. Don’t overdo or you can do bodily harm. You will know when your muscles need rest from the muscle fatigue you feel. When you work out you’re not competing with others, you’re simply challenging yourself. Don’t get frustrated with day to day progress. You won’t even be able to notice it. It takes weeks to see a difference.

      I’m not an exercise guru, but there are many that can advise and help you everywhere. That’s probably true for you @jeanMichelf although I have no direct experience with France.


      @patsyarchibald
      you are fortunate to have golf in your “bag” of tricks. Keep it up! That’s great. Wish I could do golf but my back says “No more, Are you kidding?”

      I am fortunate to have a very light case of IPF for now. My exercise experience is probably more successful than most, but I can honestly say that after 24 pulmonary rehab sessions and 3 weeks of 3 times per week in a local gym, my stamina has definitely improved and my shortness of breath is dramatically better. I am certain many people cannot push themselves as hard as I can in the gym (and I’m no comparison to the younger crowd as well as some seniors at the gym), but I know it has helped me and I have no doubt it can help others far worse off than me. Some seniors at the gym are hardly able to stand up and walk, they have trainers in constant attendance. But give it time. Be dedicated to working out regularly. A steady routine will help. Stay positive.

    • #17059

      Hi Karl,

      Thanks so much for circling back and contributing to this topic thread. As always, it is nice to hear from you 🙂

      That is a good point Karl, that you can focus your exercising and muscle building on specific groups that help with the muscles that support breathing. Actually, your post made me think of the hospital physical therapy regimen that I could continue at home after my 2017 exacerbation when I was in the ICU. I lost so much muscle mass during that time, and did physical therapy inpatient but also outpatient and they wrote out all the exercises on a sheet for me that targeted specific muscle groups to help with breathing. I am going to see if I can pull this out, I am sure I still have it!

      My friend reached out to me and actually has a recumbent bike she said I can have/borrow. The challenge is she can’t get it here for awhile as her husband is away and he’d need to bring it over with her. That’s okay though, I am going to try and do more regular walking on my treadmill in the basement. Wish me luck, and help hold me accountable! 🙂

      I also see my pulmonary team soon as well, the ones responsible for the rehab program I did so they may set up something for me soon too. I actually hope they do, as I benefitted tremendously after my last pulmonary rehab program.

      Thanks again for your encouraging words Karl, and for all the information you’ve shared. I appreciate it!
      I hope you had a nice weekend.

      Charlene.

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