My friend with Huntington's (CAG 49, age 31) is getting pretty bad. She can barely walk anymore (wheelchair seems to be around the corner) and she's having a lot of pain in her muscles and bones all the time. Her chorea movements are ALL over the place, and she takes frequent falls. Plus she has quite a bit of difficulty with choking on food. Once a person gets to this stage...how much is left? I know that's not a black and white answer. I'm just desperate. I have a lot of trouble with anxiety (I'm on medication for it) and I'm really starting to worry. I kind of just want the truth. Is my friend reaching her last year or two? I dont need sugarcoated answers. I just want the truth. I'm sorry if this sounds harsh, I'm just frustrated because I feel like I can't get a straight answer. Please don't be put off by my "attitude"...I'm a good, kind person and for once I want someone to just tell me "Your friend is probably going to die soon." instead of giving me answers like "Ah, hang in there." It's not that I want her to die. Obviously not. But I don't want to kid myself anymore. Her family members all died with 5-8 years of showing noticeable symptoms. It's been about 3 for her. Please help. I don't need comfort. I just need a taste of reality. I've lost several family members to death, so it's unfortunately something I've dealt with. I have a LOT of anxiety but i think it's mainly due to the fact that I can't get a straight answer. TRUST ME, I know HD is really really unpredictable. But based on her signs (again: out of control chorea movements, frequent falls, unable to cut her own food, choking on food, psychological (anger) issues...) is she in the advanced stages?? Agan, I just want a straight answer. Not a guarantee, obviously, but something that helps me to accept reality.

Thanks everyone. Again, i don't mean this to be confrontational. I'm just so scared. I just want the truth. I can handle it. Again, I've experienced loss. I know what it's like. I just want to know how close we are.

Thanks.

~C.

Does she have a doctor or neurologist she is seeing? There are many medications that can help some of her symptoms.
Everyone is different and progression varies but some medications can help tremendously.
I am sure it is not what you want to hear but instead of being so obsessed with time left (which none of us know for any of us)
I would take one day at a time.

According to the link that Marsha gave you on your other post, mid-stage, but each person is different, and does it really matter? Trying to define hd, and nail it down, will only drive you crazy, you need to just be able to come to an acceptance, that today is what it is, and tomorrow may be the same, or may be different, and that that's just all there is to it. Start enjoying today with your friend, because there will never be another today. If you waste all your time on the what-if's of tomorrow's, to the extreme, then you end up missing out on today, and today is all anyone has in life.



Edited 1 time(s). Last edit at 07/15/2012 05:47PM by Barb.

Barb, well said.

Carla

Barb-
Your last sentence says it all about life in general.
Well said and I am going to use it often.
Thanks.

Fist thing to say, it may something as minor as innsuffient doasge in a medicinr soing belike. Belive at couple years ago I felt myself becoominatly flat medical. I weent to a gpp here raiseds a med I am on tiny piece and that work. No two people have exacly the same sytoms at the same time

my older brother dies at 33 and hiw funer was actualllt on Christmas Eve. He has dianaed with Juvunile here. Six months after my father was buried at 58. He had the normmal form of illness. I am not a GP, but teeling you that no too people -even father and son - develop same sytems