Hello, my name is Sandy, age 57, married 2 children ages 35 & 30, one grandson 11 yrs., I live in NC, near Charlotte. My brother found out he is PHD two months ago. We as a family are just starting to try to find out as much information about HD as we can. There are 4 children in my family and no history of HD, but our maternal grandfather was institutionized the last 6 years of his life. From what I remember, his symptoms seemed alot like HD. I am in the process of trying to open his medical records, but with HIPA I has to have a court order. My problem is, should I be tested or not?? Do I want to know and how does this affect insurance in the future? I think it would be a great help for my children & grandchild. I have no symptoms. If I private pay for the test am I protected and how expensive is the testing? I would appreciate any help, I have learn so much just reading your comments, questions & answers. Thanks, Sandy

Others will chime in here with good advice. Do not get tested until you have purchased all of the insurance that you will ever need, not only life insurance, but long-term care insurance as well. It will affect your insurability. Also, think about disability income replacment insurance--if you work now, who will pay the mortage or other major bills if you cannot work?

Make sure that your health insurance plan is stable--not going to lose it when the job stops. I would not mention HD to any of my doctors until I had all of my insurance in place.

It costs $40,000 per year to have a caregiver with my wife. I am researching nursing homes. The lowest prices in our area are $70,000 per year. You can see why insurance issues are so important.

Sandy my advice is go slow , take lots of time to make decisions , like testing . We have stated many times , but the saying " You can't unring the bell" is a good one to keep in your mind , when dealing with HD . Dave's advice on insurance is such good advice . Not telling even your DX. is great advice , also . I would think , you could almost assume your Mom's dad had HD . Many of us did not realize HD was in the family . A lot of family members die of other causes and never knew they had HD . Read all the info on both sights ; the Lighthouse and here on HDAC . The knowledge might help in deciding to not test or to test . I personally have changed my mind back and forth a few times . I do know , you should not test until , every little duck is in the row ! I am sorry you had this news in your family .Take care of yourself . this news tends to be overwhelming at times . All of my best. db

thank you Dave & db for you information, it is very helpful

Hi, Sandy

I tested at UNC Hospitals in Chapel Hill. The cost was about $1,000. I tested under my own name and the cost was picked up by my health insurance - State Employees BC/BS.

Will

HI Sandy - welcome. Does your Mom show any signs of HD? If your grandfather and brother had/have HD, your Mom would have to have it too. (That would put the rest of you at risk assuming same parents as brother) However, It is possible that your brother had a spontaneous mutation and your grandfather's disease was something else.

Anything on your father's side?

Lots of support on this site. My Mom was diagnosed last summer. (We can now attribute some of my deceased grandmother's behaviors to HD - she died at 84 of a stroke) It really is quite a blow - but things normalize after awhile. My Mom is 66 yrs. old and Mid-stage.

Take Care,
Juliew

Julie's idea is very good. What is your mother's HD status? Is she alive? Are any of her siblings HD? It is possible that your brother had a spontaneous mutation and you are not at risk. You cetainly need more family history and information. How old is your brother? Another possibility is that your mother has/had a bordeline CAG count and the CAG count expanded in your brother. Have you consulted anyone at an HD Ceneter? What is your brother's CAG repeat?

Thank you for the information Will, that is good to know if I decide to do it. Only two hours from Chapel Hill and have a daughter that lives there.

Julie, My mother died in a housefire when she was 37, so no history available there. My grandfather was in a state mental institution when he became to aggressive to handle at home. Father lived to be 82 years old and no history there. Maternal grandmother lived to be 81 and good health until massive heart failure, paternal grandmother lived to 100 yrs of age. Parternal grandfather 81 yrs of age and heart problems attributed to his death.

Grandfather did pick a live 220 line on a tugboat and that is what they always said caused his problems. His mental status was always changing to the worst. He lived away from his family, so I only remember visiting there when I was very young, I did not know any of his family members.

sorry julie computer posted before I was finished. My brother is 56, 11 months younger than me and all 4 of us are from the same mother and father.
I am now the oldest on both sides of the family, so family history is now hard to find. Can this be spontaneous??? And thank you julie and Paula for you input. I have not contact anyone yet. I am afraid of the insurance coverage issues, plus I have 2 children and 1 grandson, so there is nothing I can change now there. They are not considering any children at this time. Sandy

Sandy, speaking from personal family experience, please keep in mind that you might think you have the same parents as your brother, but it might not actually be that way. I can't speak for your family, only my experience. I certainly don't mean to step on toes by saying this.

What do you mean Sally...? I only ask b`coz i tested neg almost 1year ago and am the 1st in my fam that I know of 2 test neg..

Sandy, it's still possible your Grandfather DID have HD and not have problems due to electrocution.. My father in law was only one to test postive out of 8 siblings, his Dad was diagnosed with Lead Poinsoning, as he had neurological symptoms and was a house painter. I'm sure it was HD. He died in a car accident before it could escalate much further. You Mom could have died too young to have symptoms. I'd get my insurance ready and when or if you feel ready, test then. But I'd make sure my children had a true grasp of the seriousness of this disease, so they could make informed choices about child bearing. Try to not worry, and do only what you are ready to do. Pat

This is exactly what I am thinking Pat, thank you and all others for you most helpful information. This is so nice to others to share with. My brother has cut almost all of us out of his life, he is so angry and has been for some years. After reading some of the others situations I now realize that this may have been the HD behind it. His wife talks to our youngest brother and I am gonna to try to find out what his CAG repeat may be. I am still in the dark about alot of this, trying to learn as much as I can. I do have access to medical books, but I am learning more for you all. Thanks for your support. Sandy

Sandy CAG repeats I personally feel do not indicate how the pHD might think and act . My Mom is such a nice person ; but she had some pretty odd ideas and thoughts as life unrolled . Moms CAG I think is 39 . Actually in my family , many lived normal lives , never knowing they had HD ; but , There were many times over the years , someone was not speaking to someone else , because of some supposed hurt or wronged .As a young girl , I thought ; why would the same uncle or aunt be so nice to me , but so odd, to others . I had one aunt who took you in and out of her will on a yearly basis . I remember thinking " please don't let me act like , aunt so and so , or please help me to not be irrational like Mom . As life went on , I trained myself , to take a breath , and to not react to assumptions of my own , untill , I could qualify it as a fact . By the time I qualified things as fact , I had calmed down and loss interest in being upset , anyways . But Mom , would get upset and aunties , so and so , would get upset and stay like that . Or their wrong thoughts never corrected themselves . I feel strongly in ignore , ignore , ignore odd thoughts and behaviors for pHD's . Life is smoother . All of my best. db

thank you db