My moms primary doctor has diagosed her with HD but thats not the correct way. I have taken her to so many Nueros.. and no one can help us. I finally went to a Nuero that knew what she talking about. But in the state of Texas my moms generic testing isnt covered by Medicare. I dont have that kind of money to pay for.

I take care of my sister and my family.. I feel like I let my mom down but I'm tried of wasting my time and money.. I'm done with HD. No more nuero or new doctors.. There's nothing they can do to help. Its sad that all theses doctor have nothing for us.

What I'm going to do is make worth while for her. Im going to keep taking her out and enjoy the rest of her life. In the summer I want her to go with my baby to the park.. She would love that.. As I'm writing Im crying .. I wish I could do something.......................

Hey Liz, I'm so sorry you haven't had any luck with most of the neuro's, and that the diagnosis had to come from the pcp, and that none of them are helping like you would hope.... I don't have any advice about getting help; I know there are such limited options in general for this terrible disease, and that changes are likely to come soon but maybe not soon enough to help those suffering now like your mom.

On the bright side, it sounds like your mom is where she needs to be with the nursing home + she has a great daughter to visit and take her out; going to the park sounds lovely.

Maybe this is a time to remember this Serenity Prayer (or find some peace from it even if you're not religious/Christian): God, Grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.



Edited 1 time(s). Last edit at 03/16/2010 09:37AM by smiling sara.

I've always found that saying helpful.

jl

Liz,
You are in my thoughts and prayers.
Paula

Hey Liz...please dont think you have let your mom down. I'm a mom, and one thing i know for sure is this. I dont want my kids taking care of me and doing for me. All i ever want for my kids is for them to do for themselves, and for their kids. You seem like an amazing young woman, with a sister that you care about, and a husband and little boy that i'm sure adore you. But more than that, you are able to see past your mom's disease, and see that, the reasons you have not been close to your mom or had a nice childhood is because of the disease, not your mom. That in itself is something, that some people never come to terms with. But you have been able to see that, and go beyond that to love and care for your mom. Remember to give yourself some of that love that your mom would want you to have too. You know, i have some more thoughts, but for now i need a few mins to get my thoughts together, but hang in there

Hang in here Liz. No need to go, people do have differing points of view and some post a counter opinion, that's fine as long as it doesn't get personal. I try very hard never to agree with, or disagree with anyone. And certainly not to criticise.

You seem to have your plate full at the moment, and I'm sure you will find this forum helpful.I wish you all the best...take it easy..peter

Non-opinion and never making judgments means everything is is ok all the time. That's simply not true. There may be tailored better answers for an individuals question. But the person asked for opinions and discussion. If you have no opinion when asked for one... don't post. Don't tell them asking for a discussion of their issue is pointless... they asked for the discussion. And don't act like having no opinion of anything is for the best of everyone.. you get through this by being as strong as you can and by eventually making the tough calls. We have all made good calls and bad ones. By our own judgments of ourselves. If my mistake is similar to others mistakes... I get a stronger and stronger opinion. I have my wife in a NH with, as of today, 20 HD residents. I get to talk with families... with health workers and with pHDs and I do have opinions. My opinion doesn't have to be adopted... but if someone wants to hear from someone like me with my experience and judgments.. what good is having a post from someone who has no opinion or made no judgments about the question? Which opinion is most valuable... one on topic from experience or one that said don't take any advice and having no opinions or judgments but your own, even if you don't know what to do or what to think is better than anyone who does have thoughts? I didn't make any move alone when I had the opportunity to ask someone else. Often from as many people as could. Having no opinions from anyone else is called isolation which no one likes that I know of.

I am right now and today going through an issue I have few resources to ask for opinions and it's unfortunately not of forum issue. I have one person to ask, whom I do trust... but that's very isolating and I have already made mistakes. I would love many opinions if they were available so I could get a bearing on my own thinking. Every opinion would be valuable even if I disagreed with it... it would help formulate my future actions.

Liz - you are not letting your mom, in fact, I think you have done everything you could to help. Sometimes, you can only do what you can do and then have to accept it and move on. It doesn't mean you are a bad person or a bad daughter, but that you have to keep living your life, too. I hope that you can find some peace and trust in yourself to do the best that you are able to do. That best may change from day to day, so don't be hard on yourself. :-)

Eric - I hope that you are able to work through your issue as well - it's difficult not having options. :-)

Liz,
My mother with HD was in a nursing home a long time ago when I hated her and the disease. She had a phone and called me regularly. The receptionist at residence used to tell her I was out sometimes which helped.She told a lot of lies about me to our friends and family. Eventually my godparents disowned me for something I never did no more Ester bunny or Christmas card. My parents best friends were the only ones with enough understanding of diseases to say that it was the illness and not me or my mother. So you just to deal with each fling of the flying fickle finger of fate.I think more is known about HD now.

Thank god, more is known about HD, now!

My ancestors had to grope about, in ignorance........

jl



Edited 1 time(s). Last edit at 03/17/2010 12:40PM by jl.

Liz you have a lot going on in your life . I personnally could very easily feel overwhelmed if it was me dealing with all , that you are dealing with . I am sorry you are going through so much . May I ask , what does your husband suggest that the two of you might do to handle your situation ?

lizceja,

A genetic test isn't that expensive, it's less than $350 now. But since she's already diagnosed, it's pointless unless you need to know the CAG count.

There really isnt much the doctors can do. They can make her more comfortable, and try and control her mood swings, but that's about it. They can't turn back time and "restore" her.

It's just a matter of monitoring now.

I'm sorry.

Fred



Edited 1 time(s). Last edit at 03/17/2010 03:37PM by Fred.

Fred - you are certainly entitled to your opinion!

jl