Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 i was wondering how you use the computer since you are legally blind? just being curious and nosey Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Hello to the newbies!To: Breathe-Support Date: Monday, August 3, 2009, 12:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 Not a problem, you can be nosy all you want - grin!!! he he he.... How I use the computer depends on what I'm doing and how long I plan to be on the computer. If I'm just writing something, I just bump up the font until it's big enough I can see it. I also have a program called ZoomText that enlarges things. It also has a speech component so it will read things as well. I use photoshop and InDesign some, and they both allow you to enlarge things - so I use the built-in enlargement for working and then turn on the ZoomText when I need to whip through a bunch of menues as those don't get enlarged. If I have a lot of stuff on the desktop, I use the speech and it reads the file names as I go over them with the mouse. If I have a very long document, I let the speech read it to me. For folks that are totally blind, there's another program called JAWS that offers more speech options. Sometimes it isn't just having something read out loud, but how it's read - with or without puntuation - by word, letter or sentence etc. There are a lot of adaptive programs out there. They just take a little practice to use. Hermansky-Pudlak Syndrome albinism 02 / PF 06 Personal Blog: www.heatherkirkwood.blogspot.com. > > > Subject: Hello to the newbies!> To: Breathe-Support > Date: Monday, August 3, 2009, 12:41 AM> > > > > > > > I've been lurking lately and just thought I'd say hello. > My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. > I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. > I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. > I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. > Welcome to the group to all of you. You'll find a lot nice folks here and good info. > > Personal blog www.heatherkirkwood .blogspot. com> Hermansky-Pudlak Syndrome albinism 02 / PF 06> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2009 Report Share Posted August 3, 2009 , I am also legally blind with IPF. What a coincidence. I haven't been on this board long, but I feel I have found a home where I can get answers and find a shoulder to lean on. Though my family and friends are very loving and care very much, they can't understand the way you can. Glad you found this board early. It was probably here 4 years ago at the time of my diagnosis, but I was too tired and hadn't much of a clue where to turn. So glad you are with us. I am sorry this has all happened to you at such a young age: As you learn more about the research being done at numerous facilities around the country, you'll find good reason to hang in there and enjoy life day by day. Jerry/Mississippi/54/IPF/dx April 05Who believes that hard times help us appreciate the good times even more. Subject: Hello to the newbies!To: Breathe-Support Date: Monday, August 3, 2009, 4:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2009 Report Share Posted August 10, 2009 Pink Joyce, I heard you say that. I'm legally blind also. When I get around to it, I'll tell you about my amazing blind friends who surf the web using voice-synthesizing softwear. Who believes that hard times help us appreciate the good times even more. From: hkdawn <hkdawn (AT) yahoo (DOT) com>Subject: Hello to the newbies!To: Breathe-Support@ yahoogroups. comDate: Monday, August 3, 2009, 12:41 AM I've been lurking lately and just thought I'd say hello. My name is . I'm 36 years old and live in Kansas City. I have PF due to Hermansky-Pudlak Syndrome, a rare type of albinism. HPS also includes a bleeding disorder, legal blindness and in my case a Crohn's-like digestive problem. I had to leave work last Oct, but it wasn't so much my lungs, well, it's complicated. I was just missing too much work for medical crap. I am in a drug trial for Pirfenidone at the National Institutes of Health. I now do freelance projects when I can (I was a journalist for 10 years) and I am the VP of the Hermansky-Pudlak Syndrome Network. I always knew I had albinism, but didn't figure out I had HPS until I was 29 - then developed PF at 33. Welcome to the group to all of you. You'll find a lot nice folks here and good info. Personal blog www.heatherkirkwood .blogspot. com Hermansky-Pudlak Syndrome albinism 02 / PF 06 Quote Link to comment Share on other sites More sharing options...
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