I was debating whether or not to post this up

[QueenAdrock]

I decided I might as well. I feel awful, and sometimes you guys can be nice. When you want to be.

My dad was diagnosed with a rare disease today. It's called CADASIL (http://en.wikipedia.org/wiki/CADASIL), it turns out that his severe migraines he's been getting for 11 years are actually mini-strokes. It's a degenerative disease, the main artery that leads to his brain is smaller than normal and it takes a longer time for blood to flow to the brain during times of stress, and it affects the small blood vessels deep inside the brain too.

From what I've researched, patients die approximately 12-23 years after the first onset. My dad's onset was 1996. So by those calculations, he has another 1-12 years left.

:(

[Rock]

Sorry.(n)

Hang out with him as much as possible. And be sure to tell him you love him every time you talk to him.

[abcdefz]

I'm sorry, Queen. I hope your family has good times together.

[Yorkshire~Rose]

So sorry Diana :(

[digweed]

sorry to hear. do you know if it's genetic?

[QueenAdrock]

It IS genetic. I have a 50% chance of having it. I had a terrible migraine out of nowhere when I was 12 too, so I'm kinda scared about that.

[cookiepuss]

:( :(

I'm sorry. Try to stay positive and talk to your pop everyday. you can't spend all your time with him or spend all your time worrying that he won't be around tomorrow, but make the most of everyday you and him have.

[ggirlballa]

sorry to hear that diana

how old is your dad?

[Pres Zount]

That's terrible. Sorry. :(

EDIT: interntet diagnosis is making me scared that I have that too.

[Deep_Sea_Rain]

I'm sorry to hear that....my Grandmother has Alzheimer's herself, and I can definitely identify with degeneritive disorders.

Keep your head up :(

[mikizee]

oh man. not good news. my heart goes out to u and ya family.

[zorra_chiflada]

That's terrible. Sorry. :(

EDIT: interntet diagnosis is making me scared that I have that too.

oh believe me, you're not as scared as i am

[ToucanSpam]

:(



It'll be okay, Diana. It's tough to hear this news, but you'll be alright.

[QueenAdrock]

Thanks, all. Ggirl, he's 57 now. It seems old, but when you consider both of his parents are alive at age 88/86 now, it still seems really young to me.

On the upside, the disease has been discovered fairly recently, so though there is no cure for it, there's treatment that can help. And they're still researching it, so there's hope that they can find something permanent. They're putting him on blood thinners (so blood can reach the brain easier) so I'm hoping that'll help. The funny thing is, my dad isn't really concerned or worried about it or anything. My mom is pretty upset, she called me at work to tell me the news, which probably wasn't the best idea in retrospect. :-/

Either way, get a good neurologist, Joe! They've been able to cut back on my dad's migraines drastically; he used to get them once every two months about, now he gets it maybe once a year or so. So it's at least progress. I'm hoping the discovery of this will lead to better treatment, too.

[zorra_chiflada]

getting to see a neurologist in tasmania is pretty much impossible. i think there's like, one? maybe two in the whole fucking state.

[QueenAdrock]

It may be worth it to fly to Australia if they have a good doctor/neurology lab there, yes? How much would tickets cost?

[ms.peachy]

I'm really sorry, QA.

[g-mile7]

Stay strong D and holla if U need someone 2 talk to, Im sure Im one of many with that offer

[Lyman Zerga]

That's terrible. Sorry. :(

EDIT: interntet diagnosis is making me scared that I have that too.


i thought of you when i read her post




im sorry to hear this, dana
and joe, dont even start this shit

[monkey]

:( i hope things will be ok. hugs.

[kaiser soze]

I'm so sorry to hear about your dad's diagnosis =(

my dad is developing dementia, it's so unpredictable...some days you think he's there and he isn't and other days he's a bit sharper. It sucks seeing my dad try to deal with it sometimes.

hang in there!

[na§tee]

much sorryness, d. suckage that it wasn't recognised in the early stages but at least you have a label on it now.

big hugs and muffins.

[HEIRESS]

Im sorry :(

the only positive thing is that he is going to make the most and cherish ever second he's with you and your family from this point on, and he may even have a good 10+ years still so think about how lucky he is if he can make a point in living them to the fullest

he'll probably live more from here on in than most people do in 75 years on this earth.

[beastieangel01]

Sorry.(n)

Hang out with him as much as possible. And be sure to tell him you love him every time you talk to him.

I'm with him on this one.

<3D

[ET]

Random conditions are horrible. I had never heard of this one though. It's a good thing that you posted this as a lot more people are aware of such a thing now.

I'd say more but I'd be repeating everyone.

[TAL]

:(

Be strong and smile.

[Loppfessor]

My condolences I hope you get to enjoy the time you have left together

[QueenAdrock]

Thanks. I'm still in a denial period, because they haven't done official DNA tests yet, so there's still a chance they misdiagnosed. So I'm hoping for that. I dunno. And plus, since it's been discovered recently, they're still working on solutions and maybe they'll figure a cure and they don't know if death is certain and blah blah. You don't even want to know all the things running through my head. I mostly try to ignore them and sum it up to "what will be will be" and hope my dad's having a happy life right now down in North Carolina.

[befsquire]

i am very, very sorry diana. i've been thinking about you and your dad since i saw this thread, but i just haven't been able to respond until now.

the only advice i can give you is try to keep things as normal as possible, as if you didn't have this ticking clock that came with his diagnosis. neither of my parents could stand seeing me cry before they died, because it just made it harder for them to know they were leaving me. so as much as you can, try to put it out of your mind when you're around your dad. if there was something that you've always wanted to go and do with him, or something you've always wanted to say, do it/say it now so that you don't have any regrets. and of course, never miss an opportunity to let him know you love him.

<3

[Lex Diamonds]

I don't usually post in these threads because I come on the boards to waste time and have fun but if its any consolation I can relate. I have been through a similar/worse thing with my father having a severe stroke (when I was alone with him on Father's Day, no less) and now he doesn't know who any of us are or remember huge details about his life. It's the worst because he was the person I looked up to most and probably the most intelligent man I had ever met, now he's pretty much a vegetable, and at 68 years old its unlikely he'll live long. The thing that upsets me most is that I was only 15 when it happened, I never properly got to know him as an adult. I guess what I'm saying is make the most of the time you have left with your dad, and keep your head up. (y)