My mother is HD+, in the early stages (mild chorea, cognitive decline). We know she's HD+ because I have tested positive without her knowing. She has never said that she has it, and we are hesitant to talk to her because she has a very healthy life right now (eating well, exercising, good spirit, etc). We aren't sure whether we should let her discover it and bring it up on her own time, or if we should approach her as a supportive family.

If we wait to let her discover it, she would continue with her healthy habits and great spirit. It wouldn't risk her having to deal with HD before she's ready.

If we talk to her, she would be able to take supplements and get help for her mild symptoms. She also wouldn't have to go through the realization alone, which could be very scary.

Side note: we are not planning to tell her about my test right away. That can be handled in its own time.

What have you all done in this situation? Has the HD+ person been the first to say something, or did the caretaker & family bring it up? Will you please share your stories about what was good or bad about the initial realization?

Thanks in advance.

I can not offer any experaince with the decission you are currently facing. the reason i am replying is that i have been toubled with the same question for over an year and have been trying to word my similair question to post here.

The corcerns I have is that the cognitive and emotions are already being effective.

Did your mother know of HD in her family and witness the effects?

In my case (my wife), has lived her life in fear and expressed her solution if she should develop HD. Her older and younger siblings are now in NH care. She now has mild chorea and a lot of problems with cognitive and emotions, but I don't see depression. I believe that if she was diagnosis", depression and more serious outbust would occur.

Unfortunately this site and the information about HD wasn't readly available 20 years ago before I learned about it first hand. I don't think the medications would be effective in contradicting the effects of the casued by being told you have HD once symptoms develop.

Hope there is some good response for your question so I too can benifit.

You pose some good questions and your fears towards your mother is valid. Let's put your question in a hypathedtical, sp? situation. What if the diagnosis was lets say breast cancer, god forbid. Would you want her to have the best treatments availaible to her? Would you want her to have support and be able to help her to continue to fight for her health. The anology is a total different experience I'm certain, but think about it. If this was the case would you not want to support her and she you, not discussing it and offering each other and your family support for which everyone needs? Your mother may be stronger than you think, or know she is. I would think as a mother or parent for which I am not, her concern will lie more for you and how you are. That's what mothers and parents do. I would think that knowing wouldn't be a bad thing and together you can get thru this. It's truly a hard thing for a family and a person to have to deal with, but putting it out there will release your fears and your family can get on to the bigger issues. My dad was told at the nuerologists, I don't think he fully realized as niether did I, or my family the far reaching impact of the diagnosis would have, but he had a name for what was happening to him and did we'll with that information. I wished this and other sites and support would have been available at that time in 88'. Our family was alone in this, not knowing so much support was there. You will make the decision when the time is rite, and all that truly matters is you are a family and will be there for each other in the end. This Stacey means more than those two little letters, or anything. All my best for you and your family.

Respectfully,
A.

I am the commom law partner to Lisa 26 diagnosed in 2003 symptomatic since approx.20001 The questions posed by JFB seems to be quite typical concerning the apparent shroud of secrecy involved in this disease.Lisa's older bother passed away in 2002 at the age of 30 and her sister is also afflicted and is 28 yrs old.It seems to me that even following diagnosis family tends to"not want to talk about it" As if it were something to be ashamed of or live in denial.Sometimes it only takes one person to speak up and give the family a reality check.Even though many resources are available to families via web,support clinics etc.It is almost as if by the way people react to Huntington's disease like we were still living in the days before people even knew what the disease was.In my opinion,ignorance is not bliss just ignorance.I have made it a point to educate myself about Huntingtons as much as possible.Therefore,when someone asks me about Lisa's condition,I know the facts.Do not concerned with how people will react to you speaking up.In order to be proactive and progressive,it is our duty to educate people who are or are not affected with Huntington's disease.In this day and age sticking one's proverbial "head in the sand" just does not cut it.Just one Candaina's opinion eh Ron

When we as caregivers are faced with the decision of when we should tell the one we love of what we know to be true; that they have HD we, have to be careful to consider what's really in their best interest and what is in our own interest. Telling the one we love that thier biggest fear, contracting HD, has come to pass is a heartbreaking duty. However it is our responsibility. People at risk not only spend years fearing the diagnosis but also preparing for it. You will probably find that in the back of thier mind they already know and take the news rather gracefully. Sometimes they are even relieved from the constant fear. Having been in your position, my handling of this situation was to put off telling my wife that she had HD. I felt as though I was doing her a favor by not telling her. In reality I was doing her a disservice as she was at great risk of physical injury from falls, driving accidents, cooking mishaps with knives and the stove, and other dangerous situations. As there are treatment options available for any depression issues of the diagnosis as well as all the supplements for slowing symptoms and medications for the symptoms as well, early diagnosis and treatment is in her best interest. Waiting to tell the HD sufferer of their prognosis also makes things much harder on the other family members such as yourself. The longer you wait the harder it becomes to tell them. That's what happened with me. Then something bad happens and you must tell them, but not on your own terms in the most considerate way, but out of necessity without the benefit of planning in a doctor's office with the support of family. When something bad happens, and it will, especially if you don't tell her, whatever bad thing has happened will be made worse by also having to break this news to her about the HD. Worse on her and worse on you. I know because I did it that way and it was the wrong way. She will have to know at some point and the sooner the better for all involved is more than likely than not the way to go. If I had it to do over again I would have told my wife much sooner while her mental capacity was in better shape to handle it and she would have been better taken care of sooner. It was a big mistake not to tell her. Make a doctors appt. and start taking good care of her as soon as possible.

I agree with your statement "If I had it to do over again I would have told my wife much sooner while her mental capacity was in better shape to handle it."

I asked a counselor at my local CoE and she said that her view is that until the patient is a threat to him/herself, that it is best to not say anything. She says why not let her enjoy her life and the time she has without worrying about HD. She also said that if we are going to hit the patient with this bad news, then we need to replace it with something good: medication, or a treatment, or eventually a cure. And until she declines enough that medication will help her, it is best to just let her keep living the very healthy life she is living now (she's exercising & eating right & taking some fish oil).

We're still discussing it and I'm not convinced either way. We're just trying to gather info at this point, and do our best to help her.

Thanks so much for your views. I aoppreciate your taking the time to write. )

We waited until there was a symptom to treat.

Knowing that you have a terminal with no cure is not something that I would want told to me. And you don't have to go into details. Just tell your parent that she has a condition that will cause her to become disabled but you will be there for her.

The symptoms can be treated. The first thing you should look for is clinical depression. That seems to be the big one. Look for moodiness, alot of grouchiness, confusion, crying...you'll know it when you see it. Could also be isolation or not doing things anymore that your parent used to do...you'll know it when you see it.

Find a center of excellence for HD now. Make plans now. Have a support network of caring family and friends already there for when the symptoms show up. Plan, plan, plan. Learn what you can and you will be better able to handle everything.

When you need to help her, it won't be so difficult if you do your homework now.

The number one thing is to make sure you have a doctor familiar with HD. And find the family members that will stick by you now.

You would be suprised how many disappear and don't want to "get involved". But there are some that will be your strength in challenging times as well.

Good luck.