|
Browse by Tags
All Tags » coping ( RSS)
-
|
Here's a press release that has come out from the NFB about a new program they are offering to provide free canes to anyone who needs one but can't afford them. Some of you like my telescoping cane - but this program only includes (at least it...
|
-
|
Below is an article I’ve taken (and hopefully no one will mind) from the latest issue of Future Reflections. Future Reflections is a magazine for parents of blind and visually impaired children published by the parents division of the National Federation...
|
-
|
Long before I knew I had Hermansky-Pudlak Syndrome, I was very actively involved in advocating for blindness-related issues as a member of the National Federation of the Blind. One of the biggest issues for America’s blind and legally blind citizens is...
|
-
|
While at ATS I met a really great guy that I wish I could bring to conference and introduce to all of you. He doesn’t have HPS, but he’s a lung transplant survivor with an incredible story. He’s pictured above speaking to the patients at the PAR Breathing...
|
-
|
On Sunday morning at conference we had a short session that was a panel of four of us telling stories about being legally blind, and what we'd learned from a given experience. This is Carmen C.'s story. It's just too funny! Unfortunately,...
|
-
|
Every year at conference we have what we call the Family Album. We sit in a circle and everyone says something about what happened to them in the last year. This year's conference theme was "Taking Chances." Here, Karen tells the HPS Family...
|
-
|
You've got to have a sense of humor about HPS. Here are a few things I heard lately that made me laugh. "You all said at conference that HPS stood for Hundred Person Search - well, I know what really stands for - hyper pooping system." A...
|
-
|
This is Ivette from Puerto Rico. I’ve probably misspelled her name, so anyone out there, please correct me. She is our inspiration. I’m always so happy to see her every year. She’s got headphones on because she’s listening to the Spanish translator during...
|
-
|
Many readers seem to like some of the articles I’ve rerun here about various issues that impact the Hermansky-Pudlak Syndrome community. As many of us are legally blind, a lot of those articles have to do with vision. I read the following opinion page...
|
-
|
The joint pain I’ve been describing as mild and annoying graduated to just plain yucky last night. The worst pain was right at the base of my back, and it was definitely more than annoying. It just plain hurt. I came home from work and just laid on my...
|
-
|
I love good quotes. I love those books of famous quotes and those calendars with the quote of the day on them. Today’s quote of the day seems especially fitting for those of us living with Hermansky-Pudlak Syndrome. It’s from General Omar Bradley who...
|
-
|
I saw this article this evening when I was on the Newsweek Web site. I've got a bad case of writer's block and sometimes reading helps to unblock me. As so many of us in HPSland have our own blogs now, I thought you all could expecially relate...
|
-
|
The following story ran in The Braille Monitor in January. The Braille Monitor is a publication of the National Federation of the Blind ( www.nfb.org ) if you want to check it out. I've wanted to post it here for a few reasons. First, I'd love...
|
-
|
Above is a video created by a Kansas City mom who has a daughter with albinism. You can see her blog, Parent of a child with Albinism, to the side on the blogroll. Check it out! She made this slide presentation. I don't know if any of these kids have...
|
-
|
Grief is a part of the HPS community. Until we find a cure, it probably always will be. Knowing how to handle grief as a community, however, is almost as complicated as the emotion its self. I suspect that people regularly pass away from HPS that I never...
|
More Posts Next page »
|
|
|