Laila

Hi Adelaide and everyone

If you enjoy the yin yoga, you might also like the stretching classes by Mady Morrison on youtube.  She’s from Berlin and has yoga and stretching classes – some with just music – no talking.  I try to do one of two classes daily. They help me keep calm, relaxed and relieve my chronic back issues.  And I love her music!

cheers

Hi all

I live in the snowy north and walk outdoors as often as possible.  I was diagnosed in Dec 2020 and the following winter while on mega doses prednisone was miserable. I was told to exercise as little as possible. Wrong! My next doctor told me to exercise and I bought an Apple watch and haven’t looked back.  The prednisone has played hav…[Read more]

What an interesting long conversation! Great to see so many industrious people.  Maybe Eric can create a web platform for people to trade and sell our work!
I was diagnosed with IPF in the first year of the pandemic just after putting on the finishing touches for my ceramics studio…. the one that my respirologist forbade me to enter … lol!  I’m…[Read more]

Hello Charleen and everyone
Thank you all for this amazing conversation.
When my respirologist mentioned the eventual possibility of a lung transplant I laughed and told her I was too old (at 66). Wrong answer obviously!
So if and when the time comes that you need/want to add your name to a transplant list, are there particular hospitals or…[Read more]

Thank you Debra

I’m not sure about the two meds that you mentioned.  When I mentioned antifibrotics to my respirologist she suggested that I wait because the side effects are so severe.  I wonder if that is the best advice and would hate to miss living healthier for longer if they do indeed help.
Good for you for travelling.  I have stayed home…[Read more]

Thanks for starting this thread Doug
Since I was first diagnosed in December 2020 my thoughts have swung from total shock at the possibility that I wouldn’t live to see my youngest graduate from uni, to a detached interest in this “rare disease” to massive denial and back again. I’m doing all I can to be healthy and have pretty much hiberna…[Read more]