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MARSHA, STEVEI, ERIC....

1- DO ALL PHD'S GET ALL THE SYMPTOMS ATTRIBUTED TO HUNTINGTONS? OR JUST SOME OF THEM?
2- DO ALL PHD'S GET MENTAL ISSUES?
3- DO ALL PHD'S GET CHOREA?
4- DO ALL PHD'S GET THE SAME DEGREE OF HUNTINGTONS AS EVERYONE ELSE?
5- DOES EVERY PHD HAVE THE SAME EXACT LIFE EXPECTANCY AS EVERY OTHER PHD?

ok... this an open question, and if anyone else has questions they would like to add to this thread, you know, 'THINGS WE ALWAYS WANTED TO KNOW, BUT WERE AFRAID TO ASK', than please post em k?

oh yeah:

6- IS THERE SUCH A THING AS A MILD CASE OF HUNTINGTONS?
7- WHAT EXACTLY HAPPENS WITH PHD'S VISION, WHAT CAN THEY SEE OR NOT SEE?

Eric says he's oooooooooooold, so just how old is Eric??????? LOL

This question isn't directed to me, but I will answer part of it based on my my one experience with my FIL. He was about 80 when he died. I think his CAG was 41. He had very mild chorea (justlooked fidgity) and I think that is why he was diagnosed so late in his life (also there was no known family history before that). He didn't seem to have major mental issues, however he had problems with explosiveness and irritability. He seemed to be able to see just fine, but when he was in his early 70's he complained about his vision (I can't remember what the complaint was) but he got an exam and "passed" without finding anything. But even when he was bedridden we would show him pictures and he would smile plus he seemed to recognize us and smile. So in my very limited experience I would say he had a more mild course since he didn't have such severe motor issues but maybe that has to do with his late onset. I've read people with the same CAG can have a different progression/symptoms.

No, everyone doesn't have HD exactly the same way. For instance, my wife suffered from hallucinations which only occurs in 1 percent of HD sufferers. I suspect even less now as people are more willing to go to the doctor and are treated with medications for moodiness that prevent those anyway. A large percentage of "mental issues' is simple depression. So lumping depression in the pot with hallucinations, just because they are both brain based, really isn't fair.

This is a hard thing to answer. Really all those questions. I think HD goes the way it's treated and thought of often times. A person who is in touch with HD early, with a good support in place, and with people who are all on the same page has a very different experience in general than someone who never knew about an HD history, and remains untreated deep into the disease, and probably alienates all support in the mean time and has no understanding from the beginning. I would imagine that untreated HD looks much more similar up and down the board than well treated HD does. Not only medical treatment but early diagnosis, even better yet, pre-acceptance of the disease for what can occur. And our definitions change over time as well.

For instance a word that came up often 10 years ago was "apathy". It's almost gone now because we don't feel people with HD are necessarily apathetic now. No one wants to attempt or shows interest in things that become difficult to accomplish. Blind people don't find television as important to them as television to the sighted. They are not apathetic to television because they are "apathetic" people. It's that baywatch to a blind guy is just not interesting and the point of it is lost. One might feel a blind person who seems to be doing nothing, but the radio is on.. that person is listening. We project on him that he is not engaged in anything. He is as engaged as his circumstances allow.

There is the clinical answer to this... and the subjective one. HD is about management. How HD is thought of to begin with, how much support one gets and when, and how much understanding of HD by everyone involved goes a long way to how HD looks. I, for instance, was always way behind HD and learning after the fact what had happened. HD looked a lot worse than it would have with me having had different knowledge, and therefore different attitudes about it. Teresa and I never had any "game plan". I am positive that many things would have gone much better had I and she both had HD smarts, and not HD ignorance. A lot of our ignorance was that there was community ignorance.

That's why I think the best thing to do is face HD. Even the unlikeable things about it. So many things we don't like about HD can be minimized, and I have seen people do it over and over. Their people seem to have lighter HD than Teresa, but I highly suspect that Teresa had lighter support and understanding from me, and of HD herself, than people here have now.

I am so old Barb that I know it's not only ok to say I did it wrong, but to tell everyone else I did so they do it a lot better... that's oooooooooold!

1- DO ALL PHD'S GET ALL THE SYMPTOMS ATTRIBUTED TO HUNTINGTONS? OR JUST SOME OF THEM?

Some of them. I think it may be hard to find someone who has/had all of them. I say this because the list is long.

2- DO ALL PHD'S GET MENTAL ISSUES?

To some extent yes, but this can mean many things. HD is very much a mental illness. I wish there was greater understanding of this.

3- DO ALL PHD'S GET CHOREA?

No. I don't think so, and in fact in JHD it is not that common. I am more comfortable saying everyone has mental issues than everyone will show chorea.

4- DO ALL PHD'S GET THE SAME DEGREE OF HUNTINGTONS AS EVERYONE ELSE?

There seems to be many other factors in our make up that may play a role in how HD can affects each one of us in a different way or to a different degree. So I would say no to this, in general. But to date there is nothing proven to slow it or stop it. There is still no treatment for it, nor a cure, and it is fatal to everyone who has it. So, to this degree it is the same.

5- DOES EVERY PHD HAVE THE SAME EXACT LIFE EXPECTANCY AS EVERY OTHER PHD?

No. Not at all. Even having the same CAG count can not predict this, or that it means someone, the same age, with a lower count will live longer than than someone who has a higher number.

If this was a test this is how I would fill it out. There are some real doctors on this board, I am not one of them.

-Brett T

wow thanks... all good answers...
you know, i guess its true that, we can have alot to do with just how bad, or just how painful this whole experience will be...

and ERIC, thank you so much for those words, its very encouraging to put it into perspective like you did... it
was so 'relieving' to hear someone say basically,'its not our mothers disease', we've come along way, and with knowledge and medication, we are doing much better than back in the day...

brett.... so do all phd's get violent and dangerous? do they all get obsessive? i mean are some people more mild mannered? i mean look at barb... she is so sweet, i cant imagine barb being violent...

My Father in Law had HD and I never saw him get violent, dangerous, mean... anything negative. He essentially had chorea and mild psychiatric symptoms but never violent at all. My husband seems to be on the same path in terms of the aggressive/violent behaviour although I have seen some minor irrational anger (maybe his dad had that towards his mom too but we never saw it).

I can imagine barb being violent, at least out of character physically. She is a perfect example of working with HD and looking for abilities, and not lamenting losses. She has had losses. And she is ok with acceptable trade offs too. When I first met Barb, she was depressed, and had extreme anxiety. Had she stayed on that path she would be in much worse shape now. She uses the tools she can find in the clinic, here, other places, and accepts that medication is an important tool. Dan, her husband, has come around to the situation and is pretty good about it. And being here she socializes in the HD world... and she's genuinely not afraid. She knows what could happen, what has happened with others. Does that mean HD is all rosey? No, but it's not monstrous either. A lot of how barb is, is from what she has done. Had she not done them, this Barb we might never have seen.

I often wonder if older people who seem to have fewer issues have them because onset was later and CAG a little smaller, or if life experience works for them. Also that many of life's questions are somewhat answered for them. Couple that with the chances that children are out of the home, their environment is more stable, their partners can concentrate solely on them and are also matured, if all of those things don't help a lot. I can say that when HD takes people by surprise, and working from behind, either because HD was newly discovered in the family or people wait to face it later, the panic level is a lot higher... and that can contribute to excessive feelings, and extreme lifestyle decisions that people who prepare for all this seem to avoid.

Thank you Eric

I read this today in the NYT:

"As the brain matures, one thing that happens is the pruning of the synapses. Synaptic pruning does not occur willy-nilly; it depends largely on how any one brain pathway is used. By cutting off unused pathways, the brain eventually settles into a structure that?s most efficient for the owner of that brain, creating well-worn grooves for the pathways that person uses most. Synaptic pruning intensifies after rapid brain-cell proliferation during childhood and again in the period that encompasses adolescence and the 20s. It is the mechanism of ?use it or lose it?: the brains we have are shaped largely in response to the demands made of them. "

So that accounts for the differences, we are wired differently. If someone is prone to being happy or violent, HD will likely intensify the response.

I suppose anyone with HD would be upset from time to time, likely because of the "dementia", IE confusion because they can't remember or process something.

I don't think we can state or even speculate that normal pruning, and HD work together, plus we can't do anything about it. Whatever happens in the cell death process, happens. There are some medications that compensate for some of the loss by muting over expressed chemicals and replacing others. What the well brain does naturally and somewhat perfectly we can't replicate externally yet. If a person with HD has limitations because of this fact, the only thing we can do and should do is treat what we can to regain some of the altered abilities, then don't work against HD and what it changes but work with it. If handling money is a stress, just don't toss the checkbook in front of that person. Even if the person was an accountant.

Honestly HD seems a lot about just doing what is instinctual. Bad behaviors seems to always go back to fight or flight. It's just not tempered by reasoning things out fully. We are all sensitive to other people and how they behave. We can see when people act even slightly off. An artist's talk about 1000 colors of blue might be intently listened to by artists. They are comfortable there. A non artist might stick out by simply fidgeting. They are using their flight instinct to avoid the stress of acting interested and not be impolite by walking out. With HD the person might just walk out. Why take a person with HD there to begin with? Isn't it bad enough we are there..

I was thinking about Melissa. I have two teenagers. They really do play to my flight or fight instinct. Sometimes I blow a fuse. Sometimes I just want out of their interactions. Her husband wanting her back is nice. But his motivations maybe not be a what is best but what he thinks is best. I can honestly see where Melissa is better off outside the home. It's not about love. It doesn't make Melissa bad. It's that 3 teenagers and HD just don't mix in this case. They will be adults soon. They can interact in better ways at that time. With each other, and with their mother. There is no way that three teenagers are going to always think of mom first and behave for her the way she needs. And while she would have always preferred some different arrangement, and be able to interact well, it wasn't in everyone's best interests to have mom overwhelmed just so mom was right there at all times. The kids can't leave.. so they are going to fight or withdraw. Probably do both. It's ok that Melissa stepped back from that.

I made almost the same choice for Teresa and my family.. just later in progression. The combined interactions of all of us.. me with the kids.. mom with the kids, mom with me, the kids with each other.. it wasn't good for any of us. We all were overwhelmed... and the hard choice seems to have been the best one after all.

Had I understood HD, certain patterns may not have occurred. Concepts of reasoning, moodiness, depression, ability to empathize and so forth were not in play. And what I wondered what might be HD I would know now much much sooner was HD. I set the pattern really early as if she was not affected... and therefore my reaction and "request" was simple. Quit being a selfish bitch. Seemed reasonable at the time... But it wasn't. And yes, I know that is a hail Mary with any woman as is.. but it was where we were. Had she known herself... same thing.

Anyway... people reading here do have choices. Lot's of them. There are effective ones and there is ignorantly calling your wife a bitch. If as a future caregiver, or future sufferer, you don't plan and go with the bitch/bastard route, you are passing up on a lot problem solving, and creating future ones for you and everyone else.

Hi my stupid question would be whats the difference to starting with signs of hd then getting worse ie. on a scale of 1 to 10 how bad is your hd not sure what stages are what i understand everybody is diffferent and its over time but is there any way of telling.

How bad someone's HD is can be a tricky thing to answer. Some symptoms are more difficult than others.. and I think that someone who angers easily for instance is considered to have worse HD because it can interfere more than, say, forgetfulness. But is it actually a worse form of HD... probably not. We just like that symptom less.

Stages are tricky too but you can break them down roughly as early, middle, and late stage.

Early stage means that symptoms are noticeable but most tasks can still be accomplished by the person. The person may still be employed.

Middle stage means most daily living tasks can be accomplished independently or with minimal help, but some things can not like employment. Some help and encouragement is required.

Late stage mean the person really struggles to accomplish most daily tasks independently and requires help with many or all such tasks such as hygiene, food preparation and so forth.

Marsha will correct this, but doctors use(d) a scale called the UHDRS scale to measure the progression.

"The Behavior Observation Scale Huntington (BOSH) is a scale developed for the rapid and longitudinal assessment of functional abilities of persons with HD in a nursing home environment [Timman et al 2005]. For longitudinal studies, the Unified HD Rating Scale is used (UHDRS) [Huntington Study Group 1996, Siesling et al 1998].

Tks for that it does make sense and in language i understand

Hope2 Wrote:
-------------------------------------------------------
> My Father in Law had HD and I never saw him get
> violent, dangerous, mean... anything negative. He
> essentially had chorea and mild psychiatric
> symptoms but never violent at all. My husband
> seems to be on the same path in terms of the
> aggressive/violent behaviour although I have seen
> some minor irrational anger (maybe his dad had
> that towards his mom too but we never saw it).

Agreed here, Hope. My mother (CAG 40) has never been violent. Stubborn beyond belief, but never violent. Her mother (CAG unknown) on the other hand, was extremely violent. I remember her throwing things at my Grandfather and screaming at him so loudly that I could hear her from outside the house. I also agree with the statement that every case of HD is different. From what I have seen, no two are the same.

I actually don't agree no two are alike... I think there are more similarities than not. It's not about violent or not violent. Reasoning skills are poor in both.. probably impulse control in both. My son at 10yrs old could pick out a new HD resident at the NH in two seconds. There is a reason why that is. Yes, each is their own person... but so is each caregiver. But it's not the HD that's all that different. I think if we keep re-enforcing this idea we also isolate ourselves from each other. I am not meaning anything derogatory swgirl... that idea has been around for a long time. I am sure I have said it too. I really do think there is enough in common that it's just not really true at the heart of it.

Same same... but different. I think we actually all agree... there are certainly similarities and a general pathway that HD follows but so many factors alter it from person to person. One thing that has altered my husbands course tremendously is the diagnosis itself. knowing and accepting that he has HD has completely changed our playing field.

what if someone has CAG count 42
hes 33 years
can he get married and live a normal married life?
what are the implications
what to expect?