On a more serious note As a mid-stage PHD I find it necessary to teach about HD to most people. Last month I said to the GP that I treated nausea differently because vomitiing with HD is very dangerous. I used to just tolerate nausea, now I take enough gravol to pass out and go to bed.I also refer emerg people to the excellent emdecine article on HD, although I would like to write another page explaining why people end up in Emerg with broken bones...and a paragraph sbout how difficult it is with HD to sit still in a waiting room. Your HD is on show, you generally don't feel well enough to hide it. Sooner or later the brain goes into escape mode and you have to leave, it's not being a sissy, it is the brain damage to the part of the brain which allows most people to wait more or less graciously. It is cruel to expect someone with HD to wait and wait. Every caregiver ought to know that, and stand up to the triage nurse.
thog=ughtfully
Dusty

What is a "Triage Nurse"?

Debra-
I had some of the same type symptoms in my husband. The dr put him on risperdal which helped a great deal but I didn't like the effect it had on him and there were a couple side effects we didn't like.
Someone on this site emailed me and said to try Zyprexa. The dr took him off the risperdal and on small dose of Zyprexa and it has done very well and has helped with some of the same symptoms your husband has.

The triage nurse is the person who assigns the severity of your illness and thus your place in the waiting time. People on the brink of death, strokes, heart attacks, bleeding and acute asthma go first.

Tell you what, I am tired of me having episodes of worrying...to the point of crying, anxiety, hearing voices and so on. I mention it to the Doctor and he ups and lowers my meds. It works for a little while then the panic attacks and anxiety comes right back.
I think about giving up. I am so sick of being sick all the time!

Eudell

Hey Eudell, don't give up. You are doing really great.....you are just having a sad day maybe. I know you will feel better tomorrow, and if not tomorrow, then in a few days. Hd can be tiring, can't it, i know. But keep working with your doc, til the meds are at a place where you feel real good. It can happen, and it will, if you just keep persisting.....it takes while to get a good med combination, but, when it does get right, you will be happy. Hang in there hon, and keep looking for the best in meds, not second best (((hugs)))

Eudell can you have your DX. send you to a specialist for more expertise in treating you and the HD ? And can you talk to a close friend to help you through this feeling . I am sorry you are feeling this way . But please don`t stop telling your DX. how you feel . Try to remember the squeaky wheel gets the oil . Treat your self with kindness and patience . But I would strongly suggest , going back to the DX. make him listen . Say to him , " I need you to listen to me and find me some help ." Tell him it is very important . Hoping that you find better times . db



Edited 1 time(s). Last edit at 07/11/2007 04:52PM by db.

Before the medication, Heather was jailed so many times for irrational behavior. Now that she takes the med, she is calm-too calm. She is very sweet. But has flat facial expressions, doesn't want to eat-is always on a "diet", and wants to drink. Says the beer doesn't put weight on her. Before the med she was delusional.
What upsets me:

She lives an unhealthy lifestyle.
She has no interest in the things she used to love before the med.
She sits and chain smokes.
very obsessed,(herbs, ect)
no reasoning-sometimes hours or days later she will discuss differences with me again and change her mind
just now starting to believe again that she has hd, after some twit dr told her she did not have hd.
takes crap off people all the time and just looks at them and is unable to defend herself
is usually overwhelmed with something like a messy table and is unable to clean it

What medicine Marsha?

It was 8mg Resperdal(huge amount). We were having so much trouble getting samples, and the cost was more than I could do on a continuous basis. A new drug now called envega 9mg. Supposed to be like Resperdal except without the side effects. But she is kinda zombie like now. She is still funny as hell when she does talk but she is not the same. Expects me to know where everything she has packed away is. Doesn't want it. Just wants to know where it is. Will follow me around asking (in a calm voice) until I finally start tearing the house apart looking for it.



Edited 1 time(s). Last edit at 07/11/2007 09:08PM by marshap.

That's right...I remember now, and that is a huge amount. I am just not familiar with the second drug. Zombie is not quite what one looks for though if it can be avoided. Sometimes it can't be. When behaviors are extreme sometimes you have to sacrifice a good quality to treat the bad one. Can't tell if that is Heather's case or not. With the new med I don't have a clue. Just no first hand experience. Sorry.

My mum has been crying for days about a phone bill she thinks needs to be payed...she hasnt had a phone for over two years...so its little things like this i find hard...not generally hard to deal with because i dont have to live with it, just visit...but i find it heartbreaking to see her so upset and i find it hard to keep reasuring her and to try and convince her otherwise...things like this can lead to all sorts of other behaviours and outbursts...so i hope this one passes soon...although its generally replaced with something new

Michelle, can't you just give her a "paid" reciept for the phone bill and tell her you did it?

Sometimes we don't have to be sooooo very very truthful. It doesn't hurt to re-assure somebody sometime

Good tactic to try Fred... it's when the small "white lie" is the compassionate thing. I have felt, when my conscience kicked in from time to time, that sometimes the lie is to a disease and not to the person with the disease. The disease is lying to mum about the phone bill so fight fire with fire and lie to the disease. We don't have a moral obligation to diseases.

i agree guys...and i did tell her i paid it...but she doesnt seem to hear that part...but maybe showing her a reciept will do the trick!



Edited 1 time(s). Last edit at 07/16/2007 04:41PM by Michelle.