Post by Miss Phryne Fisher on Aug 20, 2014 16:49:56 GMT -5
I saw that earlier on FB. That poor guy. Reminds me of Olivia Wilde's character on House finding out she had Huntington's after watching her dad die from it. Absolutely awful.
apalettepassion.wordpress.com/ WHO IS BONQUIQUI!?!?!?!??!
"I was thinking about getting off on demand, but it sounds like I should be glad that I didn't"
apalettepassion.wordpress.com/ WHO IS BONQUIQUI!?!?!?!??!
"I was thinking about getting off on demand, but it sounds like I should be glad that I didn't"
I saw that earlier on FB. That poor guy. Reminds me of Olivia Wilde's character on House finding out she had Huntington's after watching her dad die from it. Absolutely awful.
ALS runs in my family, and ever since my grandma passed away from it 9 years ago I admit I have moments where I'm so terrified I may get it someday. I just want to hug him
Fuck I hate ALS. That was heart breaking to watch. Heart breaking. I didn't know anything about it before I had a home care patient with it. It was so hard watching him slowly die, every day. He lived with it for over 10 years, and after the 4th or so year, he wanted to die. It was heart breaking seeing what him and his family went through every day. It's up there with huntingtons of my 'worst diseases ever' list. I'm so glad this hideous disease is finally getting talked about, and getting donations. I hate this disease, and hate seeing what it does to people. It is so , so cruel. Fuck you ALS!!
ALS runs in my family, and ever since my grandma passed away from it 9 years ago I admit I have moments where I'm so terrified I may get it someday. I just want to hug him
Me too. Except my grandma died 21 years ago. It feels like yesterday. *hugs*
ALS runs in my family, and ever since my grandma passed away from it 9 years ago I admit I have moments where I'm so terrified I may get it someday. I just want to hug him
Me too. Except my grandma died 21 years ago. It feels like yesterday. *hugs*
I was 18 when my grandma passed and it was so heartbreaking to see her struggle and suffer. I seriously have panic-y moments every so often thinking about what I will do if I ever end up with it. Its such sucky thing. (Hugs to you too!)
Such a horrific disease. My uncle died 8 years ago from it in his early forties. I'm so thankful for this challenge for bringing awareness and funding.
This video is so sad. I actually had no idea there was a hereditary component. I thought it was totally spontaneous.
There are 2 forms. Familial and sporadic. My understanding (and I could be wrong) is that familial is defined by more than one occurrence in your family line. But there isn't a way to tell through testing which it is though. I've done a small amount of research. Enough to make myself nervous and calm my fears.
Even though I've only had one known occurrence in my family, I've always been a nervous nelly about medical stuff. So I'm automatically terrified my grandma's is familial and not sporadic.
mofongo, after I replied went and rechecked to make sure I wasn't passing out wrong info. It does make me feel better that the familial version is a very small % of happening. From my (small) research testing really isn't worth it, at least to me. I honestly would rather live my life worrying occasionally I could end up with ALS, than learn I have the gene mutation and go through life assuming I already have a death sentence. I think it would really affect my outlook on life and make my anxiety skyrocket. I know for some though, testing would probably be worth it.
I'm sorry to hear about your dad. I hadn't heard your story before, but what he has is just as devastating as ALS Its so hard to watch someone go through that transformation. Nothing really prepares you for that.
I ugly cried, too. ALS is so, so cruel. To have your entire body eventually betray you, yet have an in tact mind...cruel.
When I was in grad school, I had a client who had ALS. I was able to set him up with a speech-generating device and programmed it with all kinds of things he would want/need to say. I'll never forget the look on his face when I programmed "I love you" into it. He kept the button a secret until their anniversary a few days later, and was able to say "I love you" to his wife for the first time in a long time. We all cried. (This was pre-smart phones/iPads/text-to-talk apps.)
I saw another article from a family member of someone with ALS. It gave several ways that you can try to feel, in the simplest way, what it might feel like to have ALS. Ex, sit on a chair and don't move for 10 minutes. No shifting, scratching your nose, flicking a pesky fly off of you, turning your head to see something that is off to the side. It's insane that this disease happens and we currently can do nothing about it!
I ugly cried, too. ALS is so, so cruel. To have your entire body eventually betray you, yet have an in tact mind...cruel.
Yep. This is why I think it scares me so much.
Also, I realize reading back I'm making myself sound like a super duper paranoid person. I really only worry about this like 1% of the time. But when I worry, I research, make myself feel a little better and then move on.