I first heard about HD in my first internet genealogy exploration, when I went on a chickasaw website and was contacted by a woman also studying the family history. Comparing stories by instant messages and email, we found that our grandmothers were sisters. Of the five sisters, all but my grandma were HD, I believed. No one knew as much about the test back then, especially the grey areas. That was mid 1990's.

One interesting thing she said then was: "no we're not close, HD was like a bomb going off in the family." She has never contacted me again, and her email stopped. My address and phone have stayed the same.

I had done enough research to discover that the family had also been evicted from Georgia and sent on the trail of tears. My Great Grandma was the first born in Oklahoma. Before finding out about HD, I thought the trauma was Indian experience, and/or the Great Depression, pre-dustbowl migration to California. I had no explanation of why my Mom and Dad avoided Oklahoma when we crossed the country in 1962. I assumed they were feeling defensive about my Dad's alcoholism. I also assumed the devastation of my immediate family and emotional wounds were caused by that alcoholism. My mother and grandmother had stormy emotional lives, but no diagnosis.

My family in Calif never mentioned HD. My first cousin reported that my uncle denied any knowledge when he was in his eighties.

It is a combination of shyness, apathy and fear of what I might find that keeps me from digging more. On my Dad's side, I met the Great Aunt, and her descendents. I loved them but feel I can only offer disappointment, because I can't write regularly.

Apple



Edited 1 time(s). Last edit at 12/19/2006 03:43PM by appleseed.

A combination of shyness, apathy and fear.

Well spoken, Appleseed.

I don't know that someone who is researching the genealogy of an HD family can ever hope to root out its source. There sometimes seems to be so much pure misery in each family affected that it becomes perfectly understandable, even rational, for the next generation to strike out on its own, leaving parents, family, and unhappiness behind.

I think it may be worse for HD families because of the fear of getting the disease and all it entails. But it's not a unique phenomenon.

Old people get shuffled off to the nursing homes and everybody is way to busy to visit.

Somebody at work gets MS or Cancer and it's long term. After a while nobody calls from work.

You see these things in newspaper stories all the time.

Why? One reason is people can't stay compasionate for that long. They simply can't. You can only care for a while.

We all do it to some extent. How many times have we lost touch with people in the nursing homes?

HD is worse, because after a while the person can't communicate. It makes it difficult to even talk. And you don't know what to say. What can you say? "Having a nice day?" "Gee, we just go a new Jeep Wrangler".

You don't have the same problems anymore. This is a life threatening disease with horrible implications to the protogy. How is Mary Sue supposed to tell you how bad it is that Junior isn't starting on the football team and what a fool the coach is?

See how it can be difficult? You don't share the same goals. One goal is to grow old with your wife and kids vs living another day on a tube.

And the longer it takes somebody to make a call or make an advance makes them feel guilty. So who has time to feel guilty? Isn't it better to just avoid the situation completely?

Not everybody is filled with human compassion either. If you can't keep up you are out.

It is kinda human nature to leave the sick and dying alone and move on too. It's the basis for the theory of evolution.

If it is a short illness with a clear recovery path everybody will send flowers. If it's a long term thing that involves more than a few weeks you will lose your friends.

As far as older people and thier complete denial of the sickness, that makes sense if we look at in the context of former generations. My mother always said that the children pay for the sins of the parents. She was born in 1916. Things were looked upon differently back then. We can't judge that kind of thinking based on modern attitudes. These attitudes were cast 2 generations back.

That's the way I see it anyway.

Genealogy has been my dad's hobby for years - more than 10 - and when my brothers were first ill, about 5 years ago, we didn't believe there was a genetic link to either side of the family. Since the diagnosis was incorrect until about 6 mos. ago, we weren't even looking for the correct pattern of symptoms. Once HD was brought up in a Doc. appointment and little research on our part and bingo... the path of the disease thru at least 4 generations (my mom,(possibly her brother) her father, grandfather and great grandfather) seemed pretty obvious. Even when the 35 count came out during my testing to be from my father's side (no diesease present back thru 1850's), Dad's geneology helped us make sense and find peace with how long this gene has remained "stable" in his line. During a support group meeting, we discussed long term support for phd's from family & friends... the parents of 3 phds observed that their daughter was visted by her girlfriends for years into her nh time, while their 2 sons friends dropped off the map quite a bit sooner... no offense to all the wonderful men here on our board, but other families present at our meeting agreed with this trend. I have even noticed in the years of my brothers' illness - one friend remains. Just early morning mussings...

Yeah, that's the ol' emotional, lets talk about it, teary eyed us!

I think that either by social construct or by nature itself, nurture comes to women more easily as does care giving. I certainly had to learn to do what I do...nothing was natural. To do it for my family was not really a chore...I can honestly say without prior experience I would probably been a poor friend of an HD sufferer. I think the observation is correct. You never hear a female caregiver speak about having to shave her spouses face. Someone must be doing it. But if a man has to shave a leg of his spouse you not only hear about it... you would think he threw himself on a grenade! If a woman does complain...it's not about the chore at hand but more so the grind of the chore. A man, more often than not, complains about the actual chore...then tops it off with the grind of doing it. And we wonder why we get thought of as being big babies. A razor, soap, a leg and body hair. Honestly! What is the big deal? (a bad cold is also equal to, or greater than, amputation to men)

No man bashing allowed. You guys do some amazing things with your lives' taking care of your spouses' and families'. I'm greatly relived for my husband that HD won't being coming for me, but he'd be right there with you, shaving legs and all the other stuff that needs done.

Now, the common cold taking a guy down like the plague... that's a whole other thread...lol...

susan

That was so funny, Eric!

As long as the razor being used is hers and not his - what indeed, is the big deal!

I was in awe when I heard that one of my great Uncle's took care of my GGrandmother with HD. They said he would cry when he had to change her diaper. What a loving son! He had to take care of her because all of his sisters either had HD or died from it.

My Mother was born in 1926 and her Mother had her when she was 42 with HD, so she was born in the 1800's, and her Mother had had it. We're sure it went back so far that it came with people who either came from France or England. Most probably France.

Nancy L