Hi Nancy.....that is wonderful that your husband is involved with learning about your disease and understands....you need him to be by your side.....togetherness.....and he must realize that you would be by his side too when and if he has to go through a tough time....

Yes! They need to educate themselves! Unfortunately. We have to be the ones to tell them what to read. I'm a respiratory therapist and a critical care RN. Imagine my frustration trying to educate "lay people "who think that they know more about this disease and my body than they do. I feel like Tom Hanks on an island with idiot soccer balls for friends.

Hi Aaron.....it is hard trying to figure out all this new stuff when you are old...I am 87,,,and my daughter got me a new android phone.....tells me how to work it.....then I forget what she said....I need written out directions....maybe you can do that for your dad with the aarp phone...I am using the little net10 one for emergency calls....tough to get old.....and trying to understand everything.....give him a hug...

Sari and Aaron, I'm so glad we have this forum so we can actually discuss what's going on with people who do care and understand it. Hugs

Aaronvigil, the few people I told about my PAH, I was very blunt. There is no cure, shortened life span and I am unable to make any plans as I don’t know how I will feel on any givens day. I tell them so they understand what has changed in my life. My beautician asked if I was still feeling not my usual self. I told her, I will probably never feel my usual self again. I do explain the disease to them. Most understand what I am going through, as I have explained to them how I am. My family understands and most friends do also. And those that don’t understand I let it go. If I have an appointment I don’t do anything prior to the appointment. Sometimes it takes all my energy to do what really needs to be done. I now depend on my 89 year old blind husband . He use to depend on me, but now the tables are somewhat even. I find him doing more of things that are difficult for me to do. Bending over and taking clothes out of hamper and putting them in the washing machine. Emptying the dish washer. Cleaning in between the cleaning lady’s visit. Mopping and vacuuming. Even picking things up off the floor, which is kind of funny, as he can’t see anything and I have to direct him where something is. We do laugh a lot. As I say, it’s the blind leading the blind. If we don’t tell others about this illness it is hard for them to understand. Good luck and start informing your friends. They don’t need a whole course, just the basics.