Would you be tested for Huntington's Chorea?

[MDSlady]

Hello all...I am in a real jam. This could be a very long story, but I will make it brief as I need some advice.

My parents divorced about 25 years ago, and the last time that I saw my father was right after my daughter was born. The usual story, he was an alcoholic and decided to leave his family, blah, blah. Last year my mother had decided that she was "going to try to find" him. God, I don't know why, but she did.

Again, long story short, we found out that he had passed away about 1 year prior. Nobody notified us, as we thought they might not. He had a conservator, etc. I then found out who the conservator was and called for my own peace of mind about how he died. Being a nurse, and this was my father, I wanted to know if he died peacefully. It did hurt me enough to know that he died alone. I don't think anybody should. But anyway, she went on to give me his life story has she had been assigned to him through Social Security to keep his financial records. She told me through the years that he had been admitted to 2 psych hospitals down in Florida and eventually became w/c bound and "wasn't considered a threat to anyone" so they moved him into LTC.

She went on to say that the MD's there said he was dx with Huntington's Chorea. MUST I SAY ANYMORE!!!! Being a nurse, I have witnessed only 1 resident with this horrific disease. Any while I am not close with anyone in my father's family, I decided to investigate this with some of them. They were very receptive and YES they did confirm that it is in the family.

This brings alot of guily for my mother and myself. This to us explains alot of the depression, drinking, etc that eventually broke apart our family. If only we had known this, maybe we could of educated him and ourselves and the outcome would of been better that it is. But now we could put alot of the pieces together on my father's family (i.e. my grandfather committing suicide at age 41 and other family members depressed and alcoholics)

Now my decision. Do I decide to get tested or not?? I am 43 and do not have any sx yet, however whenever I forget something, fly off the handle, or my hand shakes you know what I am thinking. Wouldn't you?? I also have 3 children that I need to think of and a husband.

The problem, if I find out that I don't have it. Case closed. I don't have to worry about it every again. If I find out that I do have it, oh boy. Is that how I want to find out that is how I will probably die, what about my husband and kids?? And possibly their kids??? I don't know what to do. Don't advise me to "talk to a professional". I already have. The decision is up to me. The only advice she said that she could give me is "to get everything in order". Life insurance, long term care insurance etc. She said that before I pursue this I must have all this in place, because if doctors and work, etc. know that I have this I could be in trouble with them as far as being covered for insurance and may lose my job eventually.

ANY ADVICE WOULD BE GREATLY APPRECIATED!!!!! Before you just write anything, think.....what if this were you???

[mandykal, ADN, RN]

ANY ADVICE WOULD BE GREATLY APPRECIATED!!!!! Before you just write anything, think.....what if this were you???

___________________________________________________________

What a situation.....considering you do know about the process of this particular disease.... I've had my share of experience providing total care to a client. First, you know your dad had it. Next, your absolutely right about thinking of your kids and spouse, and since you're looking for an advice, I would recommend getting the test done as your first step and work from there. Good luck, and I pray that you don't carry the genes.

KAL

[SchoolRN,BSN]

Hi MDSlady-

First of all, I want you to know how very sorry I am that you are going through this. I can't imagine the range of emotions you are experiencing.

Not really being in your situation, I can only tell you what I think I would do. For me personally, I think I would want to know if I carried the gene or not. I don't do well with wondering; I would rather know what I am up against & take my chances of getting into some clinical trials or experiments. A big reason for knowing though, would be so I could pass the information on to my children. That way they would be able to make decisions about their future children.

That said, your point about not letting insurance, employer, etc...know is probably valid. Is there a way you could pay for the test & not have it run through your insurance company? Perhaps that way your test results wouldn't become part of your "official" health records & you would be more in control of who finds out & when?

I wish you the best with your decision & hope all goes well for you.

:icon_hug: Heather

[MDSlady]

Hi Heather..Thanks for the words of encouragement. I have dealt with a Huntington Chorea "clinic" near where I live and the testing is free. They told me that my sample will go in with only numbers on it so that even those that work in the lab cannot associate name with anything. The testing is not the problem, like I said it is free. It's funny, I wake up some days, and say "I'm ready for this. I'm calling today" and then I find that I chicken out. They have also told me that I cannot "demand" to automatically be tested. They advise more counseling. They determine how I would handle this information. What I would do with it, and how I would deal with it. It's all good, but I really don't know if this is what I want to know!!!!

Hi MDSlady-

First of all, I want you to know how very sorry I am that you are going through this. I can't imagine the range of emotions you are experiencing.

Not really being in your situation, I can only tell you what I think I would do. For me personally, I think I would want to know if I carried the gene or not. I don't do well with wondering; I would rather know what I am up against & take my chances of getting into some clinical trials or experiments. A big reason for knowing though, would be so I could pass the information on to my children. That way they would be able to make decisions about their future children.

That said, your point about not letting insurance, employer, etc...know is probably valid. Is there a way you could pay for the test & not have it run through your insurance company? Perhaps that way your test results wouldn't become part of your "official" health records & you would be more in control of who finds out & when?

I wish you the best with your decision & hope all goes well for you.

:icon_hug: Heather

[SweetOldWorld, BSN, RN]

This is a very personal decision. I have a dear friend who was dx about 4 years ago with Huntingtons. Her mother had it for years before it was finally diagnosed, and it was difficult for them because they didn't know what was wrong with her. When my friend tested positive, she was very fortunate to find an active support group and a fantastic physician who prescribes meds that have so far helped her. She also lives her life to the fullest NOW. It's really hard, knowing what her mother went through before she died and knowing this is her fate. I admire her very much for her positive outlook throughout this horrible disease. It was difficult for her to advise her children about getting tested. Her eldest son tested negative, her youngest has not yet been tested. Her brother refuses to get tested. I am sorry you are going through this.

[TiffyRN, BSN, PhD]

It always seems to cruel that with this disease it's been potentially been passed on to a couple of generations before the disease is even discovered. This is my opinion; whether or not you are tested remains your decision, but your children (if they are not parents themselves yet) have the option of not passing this on if they know now. You unfortunately were not given this option. I always feel so deeply for the families with Huntington's because it strikes like this.

You asked we really think about if this was us what would we do. Myself, I would need to know, if I wasn't tested I would live in fear, if I was tested and positive I would quit work and go bum around on a beach in Barbados until I couldn't anymore. I wouldn't work full-time and deal with yearly evals and work politics. If I was negative I could relax and go on.

You have my sympathy for even having to ask these questions. I wish you strength for your decision.

[traumaRUs, MSN, APRN]

I am so sorry you are having to make this decision. If it was me, I would want to know for my children - so they would have the choice of having children or not. Is there a support group nearby that you could go to for opinions?

[flashpoint]

Wow...I wish there were an easy answer to your question. If you can afford it, I would do as you were advised and "get everything in order" as far as LTC insurance, life insurance, a pharmacy plan and whatever else that you might need in the event that you do carry the gene. If getting tested will bring you peace of mind, by all means, get it done. For me, I would want to know...it would give me the motivation to do whatever it was I wanted or needed to do while I was still physically and mentally able to do so. It would also make me more aware of what was likely happening when I became symptomatic and it would give me the chance to research methods of symptom mangement and possible treatments, alternative medicine, etc. Either way, I would do my best to maintain status quo in my life...worrying about what is to come would not change anything that happens...I would hope that I could live my life to the fullest while I was able to.

As far as your children go...if they were mine, I would advise them to get tested and make decisions about their futures. A good friend of my family is afflicted with this disease and all three of their children are considered carriers. Their daughter made the decision to have a tubal ligation before she got married...she has seen how the disease affected her grandmother and father and felt that she could not take the risk of the same thing happening to one of her children...she and her husband hope to adopt. I cannot imagine how agonizing the decision was for her.

Either way, whatever you decide is your decision and you have to do what is best for you. There is no easy answer, there is no right or wrong. I wish you the very best and hope that you are not a carrier.

(((MDSlady)))

[SchoolRN,BSN]

Hi Heather..Thanks for the words of encouragement. I have dealt with a Huntington Chorea "clinic" near where I live and the testing is free. They told me that my sample will go in with only numbers on it so that even those that work in the lab cannot associate name with anything. The testing is not the problem, like I said it is free. It's funny, I wake up some days, and say "I'm ready for this. I'm calling today" and then I find that I chicken out. They have also told me that I cannot "demand" to automatically be tested. They advise more counseling. They determine how I would handle this information. What I would do with it, and how I would deal with it. It's all good, but I really don't know if this is what I want to know!!!!

You're so very welcome. I am only sorry I can't do more.

The decision to know or not to know is a personal one. I can offer advice about what I think is right for me, but none of us really know what we would do until we are in that situation. It is perfectly understandable to waver in whether or not you want find out!

I am a 39 year old mother of 4, three girls & one boy. As a parent, I so wish that your children would not have to experience this. Our biggest desire in life is to keep them from harm & when it is out of our control, it is incredibly difficult to deal with. Some people (my husband is one) do not do well with knowing about illness progression. When his father had liver cancer, he didn't want to know anything about what was happening. Me, I got on the internet & constantly researched treatment methods, alternatives, etc...

But that's how I deal with stuff like that. It may not work that way for you.

I guess my point is that whatever decision you make for yourself, it should be the best decision for you. As far as your kids go, I would certainly encourage them to be tested before they have children themselves.

I wish you the best in whatever you decide. You & your family will be in my prayers.

Heather