Many here have shared their experiences of HD which vary widely.

Age of onset. Symptoms.

Take my family, for example.

My uncle had severe chorea when he was still in his 30s.

My dad didn't have chorea when he died at 69. He arguably had some cognitive problems. He had 2 psychotic episodes (right there at the last).

But he had no chorea. I have no chorea (at age 60). My sister has no chorea (at age 64).

I was actually concerned that my lack of observable physical symptoms might jeopardize my chances of getting the disability benefits that I had no choice but to pursue!

We all have our own unique experiences and challenges.

It's great to have a forum where we can share them.....

jl

jl,

Did/Do you know what your uncle's cag was? Or was his time before the testing? How old was he if/when he deceased? Just wondering if you were able to get a family cag history?

Wondering since your uncle had chorea so early and it didn't seem to be a symptom for your father or his children.

I wondered if the "type" of HD symptoms seem to run in families.

LizzyAnn - there IS no family history of CAG repeats - as I'm the only one who has tested.

The DNA test did not EXIST in my father's and uncle's time. It was just common knowledge in my family that it had been passed down through unbroken generations. My dad had it. His father had it. HIS father had it. And so on, back to a untraceable gggf who imigrated from Germany.

Since the DNA test did not exist until 1993 - only my generation had access to it. I tested positive with a CAG repeat of 43. My brother tested negative with a CAG repeat of 17. My sister has chosen not to have the DNA test - but acknowledges that she has it. My oldest sister died in an earthquake without having tested.

Since I have no children - any family "trend" will have to be born out by my sister's children and grandchildren.

To my knowledge, they have not yet tested. Of course, they've expressed varying views as to whether or not they would let their results be known, even if they WERE to test.

Since that's a very personal decision, I respect that.

They grew up quite removed, both geographically and socially, from the PHD contingent of our family - and so the painful realization that HD was a potential issue in their lives was understandably a blow.

Just in the last couple of years of Dad's life - they came to realize that he had it.

And although we were all aware of HD in the family - Dad's onset was so unusually late, that we honestly thought that it had "missed" Dad's branch of the family.

No such luck!

So to make a long story short - no, there is no "history" of CAG repeats in my family - because the DNA test has been such a recent development.

jl

Oh - and I have ALSO wondered whether not only is the HD gene passed from parent to child - but perhaps its MANIFESTATION, in terms of age/severity of onset - and perhaps even the type of symptoms.

I truly don't know the answer to that, but it seems possible. It certainly appears that could be at work in my family.

jl



Edited 1 time(s). Last edit at 03/28/2009 04:39PM by jl.

In my family my grandma had minor chorea (died 83), my dad had minor chorea (died 73), and I have minor chorea so far (age 55). However my brother had terrible chorea early and died early (at 57). My brother's two girls, one has HD at the early age of 25 and is in bad shape, the other is 30something and thinks she may have some early signs. I would be very interested also in hearing about people's family history.

I agree with Alice (and LizzyAnn) that family history is enligtening.

Due to the recentness of the DNA test - that kind of family history is often not available.

But age-of-onset and symptoms can often be illuminating.....

jl

I have to say that my sibs were very similar and at the same time, different. My 52 year old sister was the first to show any symptoms, and that came by way of paranoia and a general intensification (if that is a word!) of her personality. She fought tooth and nail over everything... EVERYTHING. She was in her late 20's, 28, is what I would say. The next to come along was my other sister, who was probably 30, and her klutziness became increased, along with her speech being slurred. My one brother, the youngest of the males, was 30, and he was basically just an intensified personality and movement. Then my oldest brother was the last to show anything, and he was about 40 i would say. The younger brother and the middle sister went pretty much the same - they admitted to having it, got the diagnosis, and declined more rapidly then the other two. I almost feel that since they "gave in", it actually quickened the illness for them. They let everyone else do things for them rather then attempting to do it themselves, and at the early stages. The other two, the oldest of both the girls and the boys of the family, showed the denial aspect, and tried hard to live the best that they could. I think this made a huge difference. Not an easy route though! We went through hell as a family because of the denial, but they are still fighting now... in very different ways, but still doing it. We lost the middle sister early, mostly because of her choices, and the younger brother of course has declined but stabilized. The oldest brother is in a wheel chair just recently, while the oldest sister has been in one for years(her choice too.)

I guess what i am contributing here is that with our family definitely showed symptoms similar to our father who had HD, and it seems that there is definitely a trend there. Our cousin, who is mid-late stage, is totally different from my sibs. It is very interesting to read what others have and are still going through with this, because there doesn't seem to be all that much in support of familial trends? I would really like to know how much you all can say on that.

My sister Karen, (who is so tiny now that i am amazed she is able to be seen, ) is doing well. She is so freaking strong, and such a live wire still, and i am so glad that she is happy and going strong. I don't understand how she can be, but i will not question it.

Much love to all of you, going through this battle. So wonderful to know that we are not alone.

Suzanne

I'm sorry so many of your siblings had/have HD, but it is interesting to read your summary. The only thing I'd maybe argue with is the "choice" aspect of either acceptance or denial. I think that I've accepted my HD, yet here I am still doing as much as I can to fill up my life with good things.

deleted



Edited 1 time(s). Last edit at 03/28/2009 05:13PM by jl.

I'm not into "giving up" - either for PHDs or non-PHDs.

How can it possibly not be a "good thing" to live life to it's fullest?

Still, I've seen life cases where people can have very different approaches to life's challenges.

I had an uncle who was blind. He was extremely bitter - and would try NOTHING but to b---- and moan and whine! People hated to be around him!

So, when I was in highschool and met a classmate who was also blind - his indomitable attitude never failed to impress me. He quickly scoped out the locations of the halls and rooms - and galloped about on his long legs (without a cane other aid) - with ASTOUNDING alacrity!

He did well in all of the regular courses - and also engaged in wrestling, band, and speech-and-drama.

On his family's farm, he loved to drive the tractor, with his brother calling out directions.

After graduating from college - he was gainfully employed for all of his adult life - and ended up in management for the last 16 years before retirement.

After retirement, he has lived on and managed HIS OWN 20 acre farm!

Oh, and he loves to play cards!

So, yeah - an irrepressible, can-do spirit can certainly be an invaluable asset.

Even when life gives you lemons.........

ESPECALLY when life gives you lemons!

jl



Edited 1 time(s). Last edit at 03/28/2009 07:19PM by jl.

Tony had little contact with his mother?s side of the family. That was her wish.

Tony?s father had worked for a seismograph crew and loved the adventurous life of constant travel and seeing new and different places in his world. His days were filled with hard work and his nights were filled with hammering out lengthy novels on his old typewriter. He did not have time to settle down and take a wife?until he met a beautiful young woman named Bobbie in Mississippi. He said he had to get married but quickly added, ?No, it was not a shotgun wedding. I had to get married because Bobbie was the only person I had ever met who thought I was damn near perfect.? They were married quickly and then the two of them continued with the gypsy life. When Tony was born, their life did not change. He lived in 42 states before he started to school, and planted a small garden in most of them. They wanted the best for Tony and his brother so when it was time for Tony to start to school they settled in a small Southern town. There they had two more sons.

Tony remembers that Bobbie?s sister, Helen, calling his mother a few times and that the two of them screamed at each other, but then, Bobbie said her sister was having mental problems and was not stable. It was proven to everyone?s satisfaction that Helen was mentally ill when she locked her two small children out of the house in frigid weather and attacked her husband with a butcher knife twice. It was too dangerous to keep Helen at home and so she went to a mental institution in North Dakota to live out the remainder of her life. No mention was ever made of the family curse.

Tony met one of Bobbie?s brothers once. The young man had called to ask for a job from Tony?s father and was hired for a survey crew. But when he arrived ready for work, he was drunk and was dismissed immediately. No mention was every made of the family curse.

Bobbie was one of nine siblings in her family and five of them had Huntington?s Disease. Bobbie may not have known what the disease was called but she certainly knew that it was hereditary. She had lived near her grandmother who had it and lived with her father who had it. She had known all of her life that this strange and terrible condition spiraled downward through the generations of the family.

But to acknowledge that would hinder her in her getting to her goal. She wanted a husband and babies. Who would marry her if they knew her secret, she must have wondered. She kept the secret for more than 30 years. After an auto accident Bobbie was hospitalized for observation and it was there that the secret was revealed. It was not Bobbie?s wish that the family be told what she had kept hidden for so long. Her sons were adults and three of them had children. Tony?s father resented the fact that Bobbie had kept such an important thing secret from him. He was not given a choice, but he cared for her with love and great kindness for many years.

My son, Eric, is the only one of Bobbie?s grandchildren who has not tested. All of the others were negative. The family curse will end with this generation in our family.

Wow! Well, there you go!

We all have our individual stories - and each one an aching insight into this disease!

jl

Hello Alice,

I apologize for insinuating the choice with acceptance or denial. That truly is not what i meant. I simply meant that my own family members did make choices that could have made things better or worse. It is something that our family would know the difference of, not necessarily any one else looking in. I know that there are people that are very proactive in their illness, and others that are not, and it is the same with my siblings. My one brother and sister that were in acceptance of it, also did nothing about it (such as any proactive stance with their illness and with their day to day lives). They declined much faster than the other two, who were very much in denial of HD, but very active and let nothing stop them, especially in their day to day lives. You know? I think it is amazing how this has come down with us, that's all. The two older ones, especially Karen, will still laugh and smile and Karen always has to be dressed up....Paul was never one for fashion, and has other problems besides HD, but he is still a big teddy bear and is happy to see me....

I just wish we could find a dang cure.

thanks for commenting Suzanne. I think there is a word for the denial that is sometimes a part of HD, can't remember it, though.