I am not sure where to begin. I am 44 years old, married with six kids (three are naturally mine: 17, 11, and 4; other three are adopted). My aunt died at age 74 from HD (CAG 40) on Dec 9th and on Dec 10th, I received a call from my doctor that my HD test came back positive (CAG 40) (my father passed away in 2002 at age 56, before we knew anything about HD, but obviously he had it, since I do). I do not have any symptoms yet (that I know of), but I have my first appointment with a neurologist on Jan 8th and I am scared to death. I am scared and I am angry...really, really angry. I didn't want to get tested, but my family (mom, aunt, uncle, cousins, everyone except for my wife) all said, "You need to get tested. You need to get tested for your children. This is a terrible disease and you need to know if you have it, etc." so I listened to all of them and pushed my doc to order the test (STUPID ME!). Well, I was nowhere near mentally, emotionally, or financially ready to get a positive test result. All I do is think about this...day and night. I am a mess. The best analogy I have heard of people with HD is that you are holding a time bomb and have no way of knowing when it will go off, but you are to expected to act as if there is nothing wrong until it does. I have no job (have been a stay-at-home dad for the past four years) and am supposed to be starting school in January for medical coding (which will put me in another $10k in debt, bringing me to $30k+ of college debt (I have a useless Bachelor's Degree in English Education). IF I finish my coursework by December, how will I get hired if someone knows I have this disease and if I was hired, how would I get health insurance? I also have no life insurance or anything to make sure my wife and kids are taken care of and there is no way I can get life insurance now with this test result on file. I have totally ruined my future. I might get symptoms tomorrow or it might be another 15 years or longer. How do you know what is a symptom and what is just the natural part of aging? There is no way I can mentally handle this for years and years.

Thank you for listening.

Matt,

Read my blog at [www.hdlf.org] Start at the end. My CAG is also 40 and I'm symptom free at age 69.

Will

Matt-
It would probably help to see a counselor who is familiar with this disease. It will take some time to cope with your results. There are so many
trials going on and that are forthcoming that look to produce a cure or reverse symptoms. Take one day at a time. Each person has to make their own decision on whether to test or not and I'm sorry you were pushed to do so. Some do and some do not which is fine. This doesn't mean that your children will have the illness. As Will said it doesn't mean that you can't do things to help keep it at bay for sometime which will also buy time with the illness which in turn gives time until a cure or reversal is found. My husband has a cag count of 45 and has had the illness for 21 years or so. Yes, he has lost some of his abilities but he still has many. He eats healthy and exercises and takes medications that help for different symptoms. I look at him as the man I married not the HD man. We still enjoy many things together - we just have changed some of our activities. Everyone seems to be dealt a different hand in life - some better than others. How we choose to live our life makes all the difference in the world. I hope those who wanted you tested will support you. Good luck to you. There are many awesome people on this site that can help you with questions you will have now and in the future.

I also wish that I had taken out life insurance before being tested. I was 21 when I tested gene positive. I'm now 33 and am medically boarded from work. I have a high IQ, but can't pour a cup of coffee without burning myself.


You have come to the right place to vent. We know how you feel!

What was the cause of death for your father? Family history is very important in this disease.

Kathleen,

My father died of a heart attack, but my wife noticed he had "mannerisms," such as he would straighten himself up often (as if he was having a back ache and needed to stretch), his right hand would shake a little, and things like that. My grandfather also had heart problems and died at 68 (in 1986). Family members remember his leg bouncing and hand shaking and they remember his brothers having the same issues. No one in our family ever went to try and find out why these "mannerisms" happened until my aunt did and then there were several misdiagnosis' with her, until HD was found (she was diagnosed only within the last couple of years). My uncle said that he remembers her having little shakes or a head bob when she was in her early 20's, but she worked in a county office until retirement age and wasn't really bad until just a couple of years ago.

I had a cardio test done about a year ago and my heart is good and strong.

Are there any reputable companies (not "Uncle Joey's Out of the Truck of My Caddy Insurance Company" ) that will give life insurance to someone who is gene positive?

What about if I get hired for a job? Will I be able to get health insurance through the company?

It seems I have REALLY, REALLY 'effed my future by getting this test done.



Edited 2 time(s). Last edit at 12/21/2015 09:49AM by MattK.

Matt,

Here's a great source of insurance information. [web.stanford.edu] In short, you'll be fine for health insurance and employment, but not for life insurance, disability insurance and long term care insurance. Some others may have some tips for those.

You'll also be covered under the Americans With Disabilities Act (ADA) if you're symptomatic and it affects your job performance. Employers are required to make accommodations for your disability.

Will

Sometimes when you accept a job with a corporation, life insurance, short term and long term disability, and long term care insurance are automatically offered with employment without a medical exam or questionnaire. My HD positive first husband actually got long term care insurance from his company after testing positive because it was a new benefit and those who signed up when it was first offered got it automatically.