Trey , what I see that helps the most with pHD is too have a simpler life style than they once had . That is a thought that takes some getting use to . A pHD brain and bodies systems does far better when they are not overloaded . Tackling 1 challenge at a time during the day , then moving on to the next challenge is something you might consider . You proably can no longer toss 3 or 4 balls (challenges) in the air and not get overcome with frustrations . This is physical , it is HD . Sometimes pHD find they may ask a friend a question , the friend gives an answer , the pHD gets angry , it is not the answer they want . It is physical it is the brains systems , just not working well . So you can do all of the suggestions health wise for pHD's and that is good , but , simplifying ones life is also a necessity. My best. db

What makes you realize and stop yourself from being so angry? Do you also notice any other emotion? Like fear or even confusion?

Fred,
Were u asking me Melissa or Trey?
DB thanks for the advice!! I hear and agree with what you are saying for the most part but we have decided not to give vaccinations to our daughter and feel she needs the xtra immunities from breast milk to protect from the illnesses. I am feeling so guilty about how the HD affects the people I love I guess I am refusing to let the HD take away another thing from me that I can control and that will help my baby.As dumb as that may sound! As far as a doc that understands HD I don't have one. My doc thinks I am too young to be having symptoms, so he had been just treating the depression before pregnancy. I think hes another one that thinks HD is a movement disorder and an older persons disease.
Melissa

Hey guys and gals,

Thanks for all the thoughts and advice here. I do have the best wife in the world, she married me just 2 years ago not knowing what was ahead but promising to be there every step of the way. It's getting tough on her when, like Dathi stated above, there are questions that I just can't wrap me head around. She wants the old me back....so do I. But, she's also very understanding.

cheers & blessings,
Trey

Mel,

You need to change doctors, and find a Neurologist. They understand.

And I'm asking anybody with HD: What makes you realize and stop yourself from being so angry? Do you also notice any other emotion? Like fear or even confusion?

Hi, trey,
I am the caregiver for Tony, my husband of 47 years. We were married when we were in college, just teenagers! The age when nobody considers the possibility of anything going wrong. Three years later we had our first son and five years after that our second. Then, a year later we heard the words Huntington?s Disease for the first time. There was no place to get information; the library had only a few brochures on the disease from The Committee to Combat Huntington?s Disease, which later became the HDSA.

We lived by the motto ?Live your life as if HD is not a possibility and plan for the future as if it is a certainty.? Tony had a late onset and I had no idea what HD was even though I knew what symptoms my mother-in-law had. I did not know what symptoms to look for or anything I could do to help manage the disease. By that time there was the internet and access to information. I sat down and started reading a forum. I cried and turned off the computer, but returned a few months later and that time I stayed.

The HD sites gave me a new understanding of the disease and of Tony?s behaviors. His anger was stressful to us all, but because I had read the stories of others I understood that it was the disease, not Tony, that caused the anger. It passed and he is never angry now. Because of all the good people who helped me understand him, I became a much better and stronger caregiver. He is a super guy that I love and admire with a dreadful disease that I hate.

I know it is not for everyone, but perhaps coming here would help your wife become stronger. Thanks for all you do. Maggie

Not vaccinating a child is ignorant and stupid.Breast milk does not provide any immunities. My father had polio, spent a year in bed and walked with a limp for the rest of his life. Most people that had polio died. FOr the past 6 months I have been doing a family tree. Let me tell you of my family with children that died at birth, at, 2,3,4,5,6,7,8,9,10,11,12,13,14,15,16,17,18,going all the way back to 1500 in a few cases, most were breastfed.Diptheria,polio,tetanus,typhoid.Diphtheria wiped out families,and communities.SMallpox.
All children in Ontario are vaccinated or they cannot go to school.
Are you getting infomation about not vaccinating children from the same doctor who is advising you about HD?
Please vaccinate your child, and have a infant hearing test while you are at it.

Dusty

Melissa just keep doing your best . I was a worry wort , when the kids were little . I wished I could have been easier going . Many people feel the same way as you do about vaccinations . My mother in-law never vaccinated my hubby . My daughter in-law has not vaccinated the grand-baby . They felt as passionate about that stance as I feel the opposite way . I feel that all of the latest results are in from science and the overwhelming support is with vaccinating . But there are those who might not benefit like babies of moms who have epilepsy . Anyways this thread is about anger . So all of my best . db

This thread is about Anger, you are right. I have HD and I am outraged that anyone can consider not vaccinating. Part of reason we are healthier in Canada is because every kid gets those shots. It saves millions and millions of dollars which would otherwise have to be spent on vaccinationable diseases. and ends unhappiness like dead children.
When Tiff was a baby you had to pay for the shots at the family doctor or pediatrician, but every town ran free clinics. It was her pediatrician who vaccinated her at the clinic. When we moved to Ontario the cost of the vaccine was free in the family doctor's office.
[www.phac-aspc.gc.ca]
One province used Salk Vacine and the other used Sabin. I got the rest of the liquid one and her godmother who is an registed RN finished the polio at her home.

Fred,
I have called the neuroloigist offices in my area and none of them have ever treated a person with HD, so I didn't pursue the issue. And it is usually either stupid stuff that makes me angry or I over react to things. Sometimes Ihave to get in the car and leave when I start feeling like throwing something ,I get so mad I have to get away or I feel like I will do something stupid. Yes, I feel afraid, afraid of losing the control I have to walk away, afraid of hurting the people I love, and afraid that my being here is more painful than if I were not here.
I have been having a hard tome deeling overwhelmed, noise is a big issue for me, or if someone interupts me while I'm doing something that requires thinking on my part. It feels like my head is full and things are rushing around in my head, I get very frustrated! I use to be able to do so many things at once, having 5 kids and now 6 I had to be ready to do anything and everything at once, I am losing that and I don't have time for this! I wasnt to be the mom I have always been but it is too hard! It makes me REALLY sad! My husband is such an optimist and hes not that educated about HD and that makes it really hard! His expectaions make things really difficult! I don't mean to make him sound bad, he is not! There is just a huge lack of understanding. I think my family thinks I'll always be the person I have always been. Boy, would I love that!!
One other thing that makes me angry is some one that takes a person struggling with such pain and loss and calls my decesion for my child stupid and ignorant! Dusty, I can see why you would think everyone should get vaccinated after the sad thing that happened to your dad! But you have no right to judge me so harshly! I have no respect for an OPINION that has no grace! I have done alot of research on the things that can happen from the vaccinations, the side effects that CAN happen are quite alarmimg! Some kids are predisposed to those side effects and there is no way to tell unless you get the vaccine and it happens. Especially if a parent has an autoimmune disorder of which both me and her dad have. I may have given my daughter the HD gene but I'll be ****** if I'll purposely give her something that I know might harm her! Look at some of the ingredients in the vaccinations! The ideal solution would be for the government to create safer vaccines so more people could feel good about getting them! But please watch the way you deal with people we have all hurt enough around here! We come here for support!
DB, I appreciate u r opinion and response! It didn't make me feel bad, seems like u understand we're all trying to do the best we can with what we have!
Melissa
Melissa

Melissa,

I too find myself getting angry over the smallest things and over reacting to things that I shouldn't. I think that I have to concentrate so hard on everything that I am doing that at the time I forget about other things around me and when I get interupted that my mind can't shift quickly to another topic and it irritates me. I definetly cannot multitask like I used to. I find that being tired and stressed also are big contributors to how I react to different situations too. For me it is like looking into a mirror and seeing a totally different person. I know that I am being irrational and I can feel it building up but there doesn't seem to be anything to stop the way I am feeling except to take myself away from what is happening, which isn't always easy to do. I also find noise to be distracting and find that at certain levels it becomes so distracting that it bothers me to the point that I either have to stop doing what I am trying to work on or I get mad about it. I get to where I feel like my mind is in a free fall and out of control of the situation and if I can catch myself soon enough and calm myself I am fine, but if I don't then I go into this unreasonable state that lasts until my mind finally gives in and lets it go.

Thanks,

Mel

Suppose we had a vaccine for HD. Would you also not give that because of other considerations.

Mel,

Don't worry. We are just expressing opinions here. They are your children and you can raise them the way you want here in the USA.

It's good that you can recognize the effect of HD. What are you doing to help yourself with it? Are you working out or taking any meds?

Dusty,
As with anything one has to weigh the risk against the benefit, so I would look into a possible vaccine for HD were it available. I am not by any means anti vaccine, but after talking with my daughters doctor (no, not the same one who is HD clueless) and doing ALOT of research and hard thinking we decided that for now, for our daughter, this the best decision. Just because something is recommended by the medical doesn't mean it is the best choice for everyone, everyone has to learn all they can an make an informed decision.

Fred,
As far as helping myself exercise has been out of the question with the time demands of a new baby. I do take fish oil, viyamin supplements. I eat alot better than I use to I include blueberries in my diet now. I really can't afford anymore supplements right now or I would take all that are recommended. I know should take better care of myself, in some ways I think I am mad at myself and how I am and its a way of punishing myself maybe?? Or thats what just came to me. I was taking Zoloft, It was the only one that is definetely safe to take while breastfeedin but it just doesn't seem to be doing the trick anymore. I will probly go back to my previous meds after nursing; Prozac, Deseryl, Adderall, and occasional Ativan. That was working great before I got pregnant.

Mel,
What you are talking about makes me feel like I'm reading something I wrote myself, I even double checked that it was not my post. So I understand what you are going through I just wish I had more support here at home!
Thanks to everyone!
Melissa

Fred.. that's not true about raising kids like you want in the USA. There are all sorts of disadvantages that parent might choose for their kids that we have legislation against. If choices are of clear harm to children or clear benefit.. you can't do what you want. There are many legal parameters to parenting.

You don't have to vaccinate. If the school gives you crap about it here, you can force the issue. If not, you can home school. I know litterly DOZENS of home school kids in my immediate neighborhood.

I will raise my kid the way I want, government be damned!

The lady who wanted her cancer ridden son to go to Mexico for treatment said the same thing and almost lost him. Most parents don't have the time or ability to home school..especially for the sake of a vaccination. You quitting work Fred to teach chemistry? The law does state they have to go to school. No choosing that legally.. and if caught, legally you will comply or someone will do it for you. This is not the country you imagine. You can't send your 8 yr old kid to the coal mines for 25 cents an hour any more even if you think it's best. It's ridiculous to have your TB infected kid in with mine. Or to have any of them at all. I am happy that the government protects my parenting from yours. No one gets to run their lives by the rules of anarchy. We are social beings in a society. You can hide from society if you want to.. but that is no more free than participating.. you are trapped in your isolation. Vaccinations are better for everyone as a whole.. and just like murder we decided something is better for people than doing whatever a person wants to do. Killers say government be damned too. If caught the government will give you a little attitude adjustment. I don't want your kid walking around infecting people or shooting people. We have virulent TB now because of the unvaccinated. I don't mind being protected from the misguided or selfish people of our society.

Well, i think things are getting a little out of control here, maybe? I dont want to say what i think, just that i think comparing not vaccinating to murderers is getting way off a bit. I dont think i will talk about this, but if you guys want to, why dont you guys start a new thread on this?

MelD I really enjoyed your post . It helped me so much . My best. db

Eric, Pleease.

"Killers say the government be damned too" OMG. Killers say "want a cookie" also. Not a valid comparison.

I don't home school, I don't have the patients for it. But I can show you a lot that do. Matter of fact, one of the engineers I worked with at my old company was home schooled.

I vaccinated my kid. I was in the Army. I walked through a gauntlet of vaccinations with those cattle gun injections. So I don't have the quams about it like others.

But I don't begrudge the people that choose not to. When we start taking away people's ability to make a "bad" choice, we start taking away freedom. (Sorry, it's the libritarian in me).

They have that right. And as far as I'm concerned, the vaccination protected us. If somebody wants to risk polio, who am I to tell them not to? Let'em I say. Holding them down and forcing them do what I think is best isn't really American, now is it?