This topic contains 8 replies, has 5 voices, and was last updated by  Charlene Marshall 1 week, 4 days ago.

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  • #20925
     Mark Koziol 
    Keymaster

     

    I previously wrote a column titled, “Finding Support While Going Through Difficult Times”. Support can mean many things. Many of us find support by talking with professionals who specialize in treating persons who have been diagnosed with a severe illness. There are others who may find comfort with simply talking to their loved ones and friends. I found support by helping others in their battle against this disease and also helping navigate some through the lung transplant process.

    In my column I describe several organizations that are available to provide support for pulmonary fibrosis patients and their families. I do feel the Pulmonary Fibrosis News Forum is the best online support group as the potential spammers are vetted and negative bashing is dealt with swiftly by the two co-moderators; Charlene Marshall and me. The conversations on our forum are also intelligent, forum members seem well versed in most aspects of the disease, and members provide useful information for all members.

    My wish is for all members to receive the proper support they need. The list I provided in my column is not all inclusive but it is a good starting point. Please comment on how you receive support for your disease.

  • #20993
     Linda Williams 
    Participant

    Hi Mark!  Somehow I missed that posting that gave places to get information and support from. I just now used the URL above the photo thinking it would tell me.  Will try info under it in a minute. This website was the first one I found in looking for information and I have found it is easier to manuever on than some other sites. All the members have seemed to be supportive and offer info regarding their experiences. You and Charlene Marshall are doing very good at being monitors and bringing up new topics.  Did your list include Ultimate Pulmonary Wellness page on FB or the website http://www.pulmonarywellness.com ?   I have come across it on FB first. Also Dr Noah Greenspan has a book by the same name of FB page and can be bought thru Amazon.

    Through this weekend, ending at 11:59pm Sunday 8-25-2019 there is a 50% discount on Dr Noah Greenspan’s “boot camp” for cardiopulmonary patients.  That comes out just under $50. As I have not heard anything from my local hospital cardiopulmonary department, I decided to give it a try.  I did my orientation to it this evening and at the end of it a 4 minute “walk about”. Toward the last half of continuous moving with him showing per video, I was breathing thru pierced lips but I did it.  Actually was pretty pleased with myself for signing up, getting it streaming on my TV, tablet, and phone so I can do each days lessons no matter where I am.  The program is a 6 week/42 day course and can be done at the person’s own convenience.  If after camp is done, they can sign up for $14.99/mo to continue to get webinars and physical instructions as well.  There are some free webinars on FB page and also his book can be read free online.   To sign up for the bootcamp, go to http://www.pulmonarywellness.com. create a sign in, go to menu, click on online, then bootcamp and register.  Toward the end of registration click on I have a discount code and input PWOnline50, then give credit card info and they will show you price charged under $50!

    Actually I think the program would be good for anyone as emphasis on exercise, nutrition, meditation, and emotional support.  Just thought I should share this and hope you can get posted so can be used this weekend.   Thanks Mark

    • #20997
       Mark Koziol 
      Keymaster

      Hello Linda, to answer your first question. If you click on the highlighted title to previous column there are some national organizations that offer support. Thank you for providing links to our members regarding pulmonary wellness. I appreciate you adding to our list. Mark

  • #21020
     Linda Williams 
    Participant

    Hi Mark – Thanks!  I did orientation Fri evening for pulmonary bootcamp and Day 1 today as I had a full day yesterday. I think this will help me a lot as I cannot walk too far without resting.  Also get motivational talk and a lesson re breathing, nutrition, things that matter to us in our endeavor to maintain what wherd we are at least. Helpfully improve.   Linda Williams

    • #21022
       Mark Koziol 
      Keymaster

      Hello Linda, that’s ok if you can not walk to far. You are at least walking. Please watch your o2 saturation. Don’t let fall below 88%. I do feel re breathing techniques are vital in our quest to maintain normalcy. Keep up the good work and celebrate your gains. Mark

  • #21005
     Taleena Koch 
    Participant

    Another great resource for support for patients and loved ones is the Breathe Support Network at http://www.BreatheSupport.org.  The Breathe Support Network has 6 groups so there is something to fit everyone’s needs.  We have the main group, which is for anyone interested in or affected by PF, there is a patient only group, a caregiver only group, a lung transplant group for anyone interested in or on the lung transplant journey, a hospice and palliative care group for anyone interested in or already using hospice or palliative care, and a grief group for those who have lost someone to PF.  The Breathe Support Network is a safe place for everyone on this journey.  We can never have too many support resources out there.  #LIVEwithPF

  • #21023
     Charlene Marshall 
    Keymaster

    Thank you for sharing Taleena! Love your group and the support it provides for patients and their families living with IPF. Appreciate your addition to our list of support services! 🙂
    Charlene.

  • #21089
     Nan 
    Participant

    Thanks Mark

    I am new to this diagnosis but have done lots of research, i am a nurse and my father had PF so i came this with some information under my belt. In my researching i came across this website which has been very helpful. I am reading the book on the PF journey by Kim and through that book i learned about the pulmonary wellness book by Noah Greenspan and i am reading that.

    My question might be better addressed to Charlene but perhaps others here can help too, i am looking for Canadian resources. I can across the Canadian PF association but the website is not up to date so I wonder if they had no funding. I would love to hear others stories, how they got the diagnosis, what was it that brought them to medical attention and their journey, especially Canadian as things are different here with socialized medicine, limited transplant locations and meds are different too.

  • #21134
     Charlene Marshall 
    Keymaster

    @nanm ,

    Hi Nan!
    I will reply to your direct message now re: Canadian resources. I’m familiar with the city you’re from. Are you a Facebook user? The Canadian Pulmonary Fibrosis Foundation Facebook page is quite helpful too, and a nice networking platform. There are also PF support groups out of Toronto General Hospital, have you heard of those? I’ll send you a message now 🙂
    Charlene.

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