Since we announced #dataforgood back in March, many PatientsLikeMe members have been sharing about why they donate their own health experiences. Becca (fibromyalgia) and Ed (Parkinson’s) already shared their stories, and now we’re hearing from Bryan, an idiopathic pulmonary fibrosis (IPF) member. Check out his video above. Miss Becca or Ed’s? Watch them here.
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Thanks much for your video experience with IPF.
Good for you, Bryan!! All the BEST ~
Me neither. I live my life as if I don't have IPF but at the same time do those things that may extend it. I bowl,play golf, line dance,fish etc. In others words exercise to possibly strengthen the lung muscles. I was diagnosed in 2010 and as of yet am not on oxygen. When that day comes I will take an oxygen tank to the golf course. So I agree...Do not give up.
Thanks for sharing your story, Brian! I've never heard of IPF, but I'm rooting for you, like everyone else on PLM. Keep on keeping on!
My mother was 59 when she fell and broke her leg in January 2010, when she was in hospital having it dealt with we realised there was a problem with her lungs, this turned out to be pulmonary fibrosis, in my mother's case it was very aggressive and she passed away May 2010. She had smoked but had given up a long time earlier and was told the condition was unrelated. I believe a lung transplant is sometimes an option but by the time she was diagnosed it was too late for my mother.
I can relate to this unfortuately I had a sister who had Pulmonary fibrosis and needed a double lung transplant she tried changing her diet however she didn't exercise due to being so weak she passed at the age of 49.
I have Parkinsons (just diagnosed). Really bummed and depressed, but felt a great lift from what you said. I need to be more like you and you helped me understand that.
Bryan:
Have never heard of IPF..
I suffer from chronic asthametic bronchotsis/COPD.
And I also have Epilepsy and Type II Diabetes and also Migraines.
I sleep on four pillows, can't lie flat, and must be sitting up so I can breathe.
Frank:
I'm sorry about the diagnosis.
Try not to be bummed...look at Michael J.Fox for inspiration.
Seek out other Parkinson's suffers....
That's what I do when it comes to my Epilepsy.
And try not to get depressed.
Getting depressed doesn't help, I know.
I fight depression every day....
Keep yourself busy with anything that makes you feel good.
I talk on Facebook alot....I talk with old friends who I've known for years
and to new friends that i've made on line.
God loves you and I love you. Keep it going.