Good evening everyone. I am a 40 year old male living in Central FL. I am at risk, but have not tested. I found out about my situation 8 years ago and came very close to suicide. I hovered around the Lighthouse site, followed Scott Midyett, and began exercising and taking fish oil. I recently stopped taking anti-depressants-a very bad move. A couple of weeks ago, I had to see a neurologist for an unrelated manner. As he began his exam, I, as always, asked him not to note the discussion, but felt compelled to tell him of my risk status. The doctor explained that I currently show no symptoms. You would think this a positive comment. For whatever reason, I began to read more and more, and remember that I must make preparations. I have a wife and child, who is not at risk. My problem is that all of this research and thought of what the future may hold has brought back all of that anxiety and depression. I cannot shake it and it is getting worse. I find myself looking for something positive about this disease, but the truth is that I simply find little hope for the immediate future. Finally, can anyone direct me to information on recommended planning such as insurance suggestions and legal issues.

Welcome.

Hi Gene,

I am a 40 year old guy who is HD +. After reading what you wrote I believe you may benefit from receiving some counseling, that can further explore the idea of being tested. Also, if your antidepressants were helping, and if you can still get them, I would recommend getting back on them before tackling any hard facts about HD. In other words first work on getting your state of mind in a better place then focus on those preparation, as you will want a clear head when receiving professional advise to ensure you can remain objective to what you are being told. Hang in there and take support from those around you too.

Brett T.

Welcome!

Insure before testing.......

I am a 61-y-o who's HD+ - and the fact that I've followed this advice has been a godsend to me!

jl

Welcome.Symptom checking is how we had to cope with HD before the blood test.At the same time, we did not share our HD status with anyone so we could pass as normal for as long as possible. My sisters children and my children did not know my mother died with diagnosed HD. We survived that way until I had so many problems which could not all be blamed on menopause. I went to a shrink for mindnumbing depression. He could have ordered a blood test but did a full shhrink work up incuding many comments from the clinical nurse who taught a womens depression class. He said I was obsessive compulsive and completely making up the HD. In Canada shrinks do not diagnosed HD that is the neurologist's job. I did not even see a neuro

I wholeheartedly believe what jl is saying, and am glad she made this clear. I was trying to make two point; 1. You may want to think about getting tested and talking to someone about this may help ( not whether you should or should not ) and 2. When weighing the best long term plans for you and your family try to be in the best condition possible to ensure the right choice(s) are made. I can tell you when I was in deep depression I was not capable of making good choices. Dustyblues, I am sorry you had to go through that misdiagnosis, this along with secrecy seems to be an all too common pattern relating to HD ( as if the disease needed any additional negative attributes. Personally I think it does just fine on its own ). BT

I thank you all for your insight. As far as the suggestion that I get my head straight before making decisions and obtaining insurance, would I not be better off w/o having to list seeing a shrink and the meds? Also, how do you know what the companies test for? I mean, is there any chance that insurance companies could test for genetic problems when they take the blood sample?

It is so strange. I had effectively buried this issue for years and thought I had control. Sorry for rambling, but I am consumed with worry right now.

Gene, do have any insurance now? I was under the impression you did given you had been seeing doctors and assumed you were talking about adding to your plan long term care insurance. Which would ask you if you knew of any previous conditions such as HD, but would not test for it. To my knowledge no companies do this, but like jl says if you take the test first and it come back + this would prevent you from honestly filling out the application which could cancel the policy later ( that you paid good money for ) or even getting it.

If you have no coverage now I would say proceed as though you were HD free. ( after all you just got told by a doctor you are ). Also, if you have already been on antidepressant meds resuming them should not affect your quote. ( but i could be wrong ) Unfortunately depression is very common and many people take these drugs for many reason, which should not raise a huge red flag to an insurance company. But I hope other will write more who may have worked in this field or have more experience. It is true these plans can be hard to get. Know you are doing the right thing now by asking lots of questions. BT


Note: my "getting your head right" advise was more if you were going to address money matters and retirement plans.

Depression is imminently treatable with anti-depression meds. I would keep trying them, until the right ones are found.

Since depression can be caused by multiple things - I would ask about depression meds, without mentioning HD.

And insure!

jl

Gene, why would an insurance company take a blood sample?

I don't think they can do so, without your signing a release.....

jl

To answer Brett's question, I do currently have insurance through work. I am looking for long term care and, perhaps, more life insurance. JL, years ago, when I first found out about my risk, I saw a psych and counselor. I discussed my problems in depth with both. If I go back to the same psych, how could I ask for more meds and him not assume the same issue. As far as a blood test, I applied for a term policy a couple of years ago and did give blood/urine. I am not sure what they tested for.

I don't think they can test for genetic diseases without a release.

Gene67,

They didn't test for genetics. They probably tested for blood bore diseases and did a cancer screen.

If you want to find out more about insurance, go to at least two companies, like STATE FARM or NATIONWISE. They can help. They can explain what you need to have, and the tests.

I wouldn't throw in the genetic component while talking to them. They will give you a booklet and you can ask to see their policy discloures and the applications.

You should be able to get about any insurance you want. Most exclusions on life insurance are within 2 years, and you don't have to worry about 2 years.

I'm curious. Why do you go to a neurologist in the first place? Are you having some other symptoms?

Fred, thanks for the advice. How do most address the family history section on these forms? As far as the neurologist, I began to have numbness and tingling in both arms after sharp pain in my back. It appears to have been a pinched nerve and has gotten much better. Thanks for asking.

Welcome! I am also at risk, and I posted recently "how to deal with stress" because I am dealing with lots of stress about the at-risk status lately + upcoming [EDIT: ANONYMOUS] test date in Feb (more stress than depression for me at the moment). This week is better than last week...due to me taking some of the suggestions given (excercise if you can, think positive, find distractions...)

Here is the link to the checklist for what to do prior to testing.
Seems pretty good, except that I bought separate Long-Term Care insurance because my Life & Disability policies did not have an optional rider for it.
[www.hdlighthouse.org]

Also, if you feel there is not a lot of hope on the horizon, read this link about Will and things he has done to help ward HD off as best as he could. [hdlighthouse.org]

Plus Barb has had some great posts lately about her treatment ("Go team Hayden" and a few pages back "Dr. G says...." Plus totally separate avenues of gene-switching & stem cells also give me a lot of hope. I hope you can find some hope by reading some if this stuff too.

EDIT: I agree - pick one or two companies and get the forms. Although forms may change over time, this can help if you can see the questions and decide whether it would be better to apply before your answers change. You need to answer honestly (or risk your policy being no-good when you need it), but you do not need to volunteer what is not asked. My Life, Disability, & Long-Term Care Insurance forms through Northwestern Mutual did ask about immediate family history for "hereditary diseasus such as diabetes or cancer" (Although not specifically mentioned, I would think HD would qualify as a "hereditary disease", but none of my immediate family has officially been diagnosed so I did not list it), and in another section it asked whether I had been tested for a "Huntiongton's Chorea" amongst a laundry list of about 30 other diseases. As for bloodwork, I don't think genetic testing is currently practiced, but there could come a day....

EDIT AGAIN: Although I somewhat agree with the suggestion about being in a state of mind so that you can make good insurance decisions, it may also be that getting some of this stuff in order may help you feel better. Policies can always be cancelled - for example if you get new info like a negative test. Most have a 30-day period where you can even be refunded. But past 30-days, you can cancel and only be out the money that you already paid.



Edited 3 time(s). Last edit at 01/04/2010 02:13PM by smiling sara.

Gene - I am almost 40 (ha! LOL) as well and I understand what you are going through because I've been there. I have an 11 year old (going on 40 himself!) that I was really worried about as far as not being there for him mentally and physically as he needed me to be. All the stress of the not-knowing yea or nay was extremely difficult. I was either very angry or very sad all the time as I couldn't find anything positive either about HD. I'm not sure there is anything positive, but I can tell you that once you reach a point that you can handle the results (whether negative or positive), then you are ready to test. For me, personally, I could not take the indecision and the not-knowing any longer - it was doing me more damage mentally than good. I was not able to live my life as if I did not have the disease - it was getting to the point that I couldn't stand to be in my own skin.

I will tell you that I am extremely hopeful for a treatment sometime in the near future. There are so many trials in the works at all different levels, that I think it is going to be possible to at least have a treatment that may slow or stunt the disease. That's what I kept my eye on as I was going through the testing process - if I have it at least I can be part of something to help not only myself but everyone else in this same mess. To me, that was the positive in the situation.

As far as insurance, I don't think it is a prevalent as we may think. I have not seen one insurance form that asked me about HD or genetic diseases. I have been asked about family history related to heart disease and diabetes and cancer but not HD. I think it is something that we fear, but in reality, I don't think it is on anyone's radar screen. I was worried about that, too, but turns out I didn't need to worry.

If you are worried about testing and having your insurance company know, you can test anonymously - I did that and I had a lot of fun being someone else for a couple of hours - turns out that she did a lot of things I would never dream of! LOL

Hang in there - it's going to be okay - either way.

Linda

Gene67,

Look at the forms first, then decide. I applied for health insurance and that wasn't on the forms I looked at from State Farm.

If you watch a lot of TruTV where a spouse takes out a huge policy on the other spouse then offs them, you can see they aren't very picky about facts, just a signature.

Just get the information from the actual source. Look at the applications and see what you need to tell them. You may be surprised. Plus, there are lots of insurance policies. You don't have to tell them your life history or your personal issues to get the application.

Gene - there are a lot of causes for neurological symptoms besides HD.

Unless there is a DIRECT ancestor who has had a positive DNA test for HD - I would not even THINK of sharing probable family risk with any potential insurer!

Fred is right that most insurance policies have a "pre-existing condition" clause that you must check out. Mine was 18 months (not 2 years). You simply must read the boring policies.

As Fred also correctly pointed out - there are are NUMEROUS insurance plans/policies out there.

sHOP them, until you find one that suits your potential needs!

This is very important.

jl

Thank you all for the advice. Sara, good luck. My prayers are with you.