Hello all,
I am a 4th year doctoral student in clinical psychology. I am writing my dissertation on the coping styles of primary caregivers of Huntington's disease patients, while the patient is in the pre-symptomatic stage.

If you would like to contribute to this understudied area of Huntington's disease, and be eligible to win a $100.00 Visa gift card as a thank you from me to you, please click on the link below.

[www.karenhuntingtonsresearch.com]

Please feel free to email me at any time at KarenHuntingtonsResearch@gmail.com

Thank you.

~Karen

Question...if the patient is in the pre-symptomatic stage why would they have a primary caregiver?

A 100.00 visa card? I find this very insulting!!!!!!!!!! To say the least!!!!! And yes, if they don't have symptoms yet, then they don't have hd yet! I think you have a lot to learn about hd, and about people

I agree that it sounds weird to suggest that a presymptomatic individual would need a "primary caregiver." In fact, it's wrong. A presymptomatic individual does NOT need a "caregiver."

However (wrong choice of words aside), I can see how this research could bring about something good (i.e. better services for people dealing with anticipatory grief, fear anxiety, etc., related to an HD diagnosis). Coping with the realization that a loved one is gene-positive (even though asymptomatic) can be scary. Spouses, etc. can't know exactly what they can expect, and when, and whether they will be good caretakers, and how to be, and etc. etc. etc. Sadly, there seems to be a lack of services available for people in this situation. As I've attempted to find a good counselor (through the COE) who can help me to deal with my fear and anxiety regarding potentially being a caregiver for my husband (and son), I've found little that can be of much help. As you all know, coping has been difficult for me. Of course, a 'regular' counselor can be of help (after all, counselors help people deal with anxiety, fear, stress, anger, grief, and a multitude of other emotions that go along with learning that a family member will eventually develop HD). Still, if a program could be implemented that was HD-specific, to help people who are terrified about what the future will hold for their loved ones (and themselves) as a result of HD, I see that as being a positive thing.

Since HD is so rare, any HD-specific services that are developed as a result of research done on how loved ones of presymptomatic individuals "cope" is a good thing, in my opinion. Might be able to help us cope better!

With my father I was not aware that I would be his primary caregiver...but I was.
With my older sister, I was not aware that I would be her primary caregiver...but I am.
With my younger sister...she had her two moms, who would help out and they both died. So......
What am I saying......just because you have a spouse, parents or siblings doesn't mean that's who will end up being
your primary caregiver.
As we know HD symptoms can be so different with each person. My take on it anyways.
I believe the intent of the study is too help prepare for the eventual symptoms to appear...good for her for wanting to be involved.

The thing is, she is writing a paper about HD, but is presenting hd the wrong way in her paper. I looked over the whole survey. She says in the survey also, that it is for caregivers of pre-symptomatic patients in the early to early-intermediate stages. First, if you are pre-symptomatic, you do not have HD yet, therefore someone is not a patient, and if pre-symptomatic, then it's not early to early-intermediate stage. Her survey says that in early stage, you are still able to work fulltime and completely perform your job. Well i am very early stage, but i am not able to work at all, even part time, because of the inability to multitask, and because i get confused easily. But i am able to do all my other things of daily living. It's just, if she's going to do a paper and a survey, that's great, but it has to be accurate, and it is not. I agree that her motivations are good, but innacuracies about hd is not good. And having hd, i still find the $100.00 bait humiliating and emberrasing, and maddening, like as if we in the hd community would not do anything we could, if we thought it was a good idea, to help the cause of helping a student and others about hd, without a money bait



Edited 1 time(s). Last edit at 12/23/2011 04:03AM by Barb.

Good points, and well-said. Presymptomatic does not equal early/intermediate stage, and where someone is writing a paper about HD, HD and its stages ought to be presented correctly.

And you're right, I think any and all of us would do it for nothing (would do ANYTHING we could to help with efforts for treatments/a cure/supports for all in the HD community)! Still, a gift card is a nice 'thank-you' gesture; I'm sure it wasn't meant to be humiliating to participants . . .

I hope she realizes that a person can be (and often IS) gene positive and presymptomatic, AND a caregiver to a symptomatic, later-stage HD patient.

My step son is considered presymptomatic but we, his Dad and I know differently. I think this is a good thing to talk about as the powers that be REFUSE to recognise what the HDSA used to call "soft signs". My step son has been in a mental hospital 3 times between the ages of 16 and 23. For suicidal talk, and psychotic episodes where he was SURE I was trying to poison him. He has changed his personality and some reality without meds. He told everyone that he was going to get a million dollars from a movie script, ( the movie 300) that he wrote when he was in THIRD GRADE! He told us his principal sign permission slips to producers as he didn't want to get his parents involved.. that Christina Applegate would send him the million.. I could go on and on. He is fine now on medication altho he cannot keep a job as he thinks everyone is talking about him and leaves. This IS HD, no doubt in my mind. Dr's like to say it could be something else, not HD..NOT. it's HD, and he's considered Presymptomatic. NOT by us and since we support him in everyway, I'd say we are his caregivers!

Love to you all and have a WONDERFUL HOLIDAY SEASON! Pat

First of all, I want to apologize to anyone I offended. I have tried to remain sensitive to those in the HD community, and it is obvious that using terms like "pre-symptomatic" and "caregiver" are not the best terms. I truly apologize for offending anyone. Those were not my intentions.

I feel that this phase of the HD diagnosis is greatly understudied. I, myself, was told I had a disease that would set in 10 to 15 years later, and the waiting was beyond awful for me. Given this personal experience and given that this phase of Huntington's disease is understudied, that is why I chose to study this.

I fully understand and acknowledge that there is probably little/no "caregiving" going on while a person diagnosed with HD is "pre-symptomatic." However, I felt that referring to a spouse/partner/family member/friend as a "potential caregiver" or a "not yet caregiver" was too confusing. The terminology was hard to settle on, and I apologize at how pejorative it is. I also recognize that one can also be positive for HD and be a caregiver as well.

In regards to the Visa gift card, I wanted to say thank you to anyone and everyone who participated. Your contribution to this understudied research is so valuable, the gift was intended as a thank-you gesture, and not as bait or me thinking you would not want to participate otherwise. It was truly the only way I could think of to say thank you, without writing each person individually (which would break confidentiality).

I again apologize for any offense I may have caused. As some of you pointed out, I am trying to learn more about spouses, family members, friends, and anyone else who might take on the primary responsibilities for caring for someone with Huntington's disease. I thank you for your feedback, and hope that you accept my apology.

~Karen
karenhuntingtonsresearch@gmail.com

Karen, it's ok, no need to apoligize, so much as just understand, that's all, and what you said now was good. But please, i just want you to understand that you're still not getting it. You are still saying someone with hd that doesnt have symptoms yet. What you need to say is someone that is hd positive but does not have symptoms yet. There is a huge difference. Someone that is hd positive, does NOT HAVE hd, ever ever ever, until they actually have symptoms. You absolutely have to get that difference for your paper, or your are saying things about hd that are not true or scientific. Can you get that and understand that? There is no such thing as someone with hd with no symptoms

Barb wroteomeone that is hd positive, does NOT HAVE hd, ever ever ever, until they actually have symptoms.
There is no such thing as someone with hd with no symptoms
I'm confused.
It was my understanding that when one tests positive, you have HD but it is not recognized by the medical community until symptoms can be "charted".
ie: my one sister tested positve a decade ago, it on disability for HD and has been going to the HD clinic for years but it was not "official"
until last year. ( Yoohoo sister K.... is that accurate)
I agree there is no such thing as someone with hd with no symptoms.
Karen wrote: I, myself, was told I had a disease that would set in 10 to 15 years later, and the waiting was beyond awful for me.
Are we to conclude you are gene positve for HD or are you speaking of a different disease?

I am absolutely correct in what i said Colleen. Maybe Marsha can explain this.

Think I read that the wrong way...I get it now. Sorry about that.

hmmm, Colleen, how could Kelly get disability without symptoms? From things Kelly has written, she's had symptoms for years, but they didn't give her an official diagnosis until last year??? I know many times someone can have minor symptoms, and not get an official diagnosis until things are more obvious. HD begins when someone shows symptoms, whether the official diagnosis has been given yet or not. Once someone has the official diagnosis of having symptoms, they can then say, it's now official, but my symptoms maybe started 2 or 3 years ago, or whatever the span may be. But someone that has tested positive, but doesn't have any symptoms, does not have hd, they are just hd positive. Here on the forum, a phd is a person with hd, which means, they have symptoms, if they have tested positive but don't have symptoms, they are not a phd, they are a person who is hd positive. But more than anything, i wish Karen would respond to what i have said. Her paper is not accurate, and that bothers me

Colleen, we must have posted at the same time lol

I will wait for Kel to confirm, I could have it wrong....geepers.
But thanks for the explanation, I did figure it out...really..lol

If someone has the HD gene and is not exhibiting symptoms, then they do not have Huntington's disease, they are at high risk for developing the disease in the future. If treatments like RNAi or antisense become available soon, there are people now with the gene who will never get sick. And every once in a while, there is someone with a count of up to 42 repeats who lives to old age without giving sick, including the 94 year old woman I reported about last year. And of course sometimes people die from other causes without developing Huntington's. When the gene test is given to someone who is not currently sick, it is predictive, not diagnostic.

The classic way of diagnosing Huntington's Disease is by the appearance of a certain level of motor impairment. Whenever you read a study about age of onset, that's the definition being used. However, thanks to the Predict-HD study, researchers now recognize what we family members have been telling them for years now, which is that cognitive and psychiatric symptoms can appear years earlier (up to 17 in that study). So now there is debate in the professional community about when HD begins. But again we are talking about symptoms. No symptoms, no disease yet and definitely no diagnosis.

HD is always diagnosed clinically. The gene test may then be given just to be sure it is HD and not some other neurological problem which occasionally occurs. Just because there is HD in a family doesn't mean that a family member with neurological symptoms has HD - usually but not always.

After diagnosis, an individual is definitely going to need help with managing symptoms. While some people do have more physical than cognitive symptoms early on and may be able to continue working for awhile, most people need to apply for disability after diagnosis. In fact, not being able to perform to standards at work that one could previously meet or exceed is very often the impetus for diagnosis. My ex was diagnosed for those reasons even though he had almost no movement impairment. Also, disabling psychiatric symptoms can occur early on and since individuals respond so differently to medications, it can take quite a while to get the person back on an even keel. Although HD is a progressive disease, the challenges come early with this disease. They may change over time, but as a caregiver I find the cognitive and psychiatric challenges to be far more difficult than the physical ones. They are a struggle for the person with HD and a struggle for the caregiver and involve alterations in fundamental roles and often lack of support from professionals who either aren't up on the latest research findings or who just don't 'get it.'

Karen, your definition of stages is wrong. You are not going to know who is answering your questionnaire, someone who anticipates being a caregiver to someone who is gene positive or someone who is actually caring for someone who is exhibiting symptoms. Those are very, very different times and the challenges and the coping strategies that people employ are entirely different. I don't understand why you didn't go to experts or come to the HD community and ask us before developing your questionnaire.

Potential caregivers, people who love someone who is HD positive (or even at risk) can cope well or cope badly. The coping strategies that I know about include planning for the future early so that can be gotten out of the way, trying to live life to the fullest and making good memories, living a healthy lifestyle so that onset can be postponed as long as possible, participating in research studies or fundraising to influence the changes of treatments becoming available soon, and seeking treatment for depression or anxiety as needed. Of course people can cope badly. They can go into denial, they can make HD into a taboo subject, they can self medicate with alcohol or illegal drugs, or do any number of dysfunctional things. But those people aren't here and they don't answer surveys. We may know them because they are related to us (not me, I'm speaking generally), but they don't go to HD support group meetings or post here or on the other forums or email lists or attend HDSA meetings and conferences.

After diagnosis, the challenges are obviously very difficult and they are real challenges with real obstacles. Frankly, I am tired of the focus on how caregivers cope psychologically. Here's what caregivers have to do: 1) successfully fight unhelpful bureaucracies to get the person their Social Security disability benefits, disability insurance, Medicare, disability retirement from work. This seldom goes smoothly. 2) get their loved one good medical care. This means finding a doctor who is familiar with HD and who won't dismiss your legitimate concerns because they don't see 'chorea.' I can't tell you how many times I have heard about doctors who insist there is nothing wrong someone and in the meantime they lose their job and disability and medical benefits. It also means getting the cooperation of the loved one who may not see their symptoms. This is not psychological denial, although it can be, but an actual, disease symptom where the person can't recognize their own symptoms. 3) balance the needs of multiple family members. The HD patient needs a quiet, structured environment but it's almost impossible to provide that with children. Psychiatric symptoms may impact children and the noise and hustle and bustle of children may negatively impact the patient. 4) cope with reduced financial circumstances. The well parent or spouse may need to work longer hours just when they are needed more at home. These are just some of the challenges. And over all, there is little support for caregiver and patient. The Robert Woods Johnson foundation issued a report which said that if one set out to design a disease which would fall through the cracks of medical and social service support, one could not do better than Huntington's Disease.

The issue of competency is very troubling since people don't meet legal standards to be declared incompetent (ie danger to self and others) but may still be making poor decisions that impact negatively on themselves and the family, decisions they would never had made when they were well. And even when the standards have been met, you can still be sabotaged. Right now I am working with the sister of a man who has had HD for over ten years. She has finally been able to get him declared incompetent in his own state and rescue him from a filthy house, from forgetting to take meds and neglecting other health problems, from getting in trouble with police, neighbors, etc. and from disastrous financial decisions and place him in a nursing home in her state with an HD wing. All was going well but then he had behavior problems and needed a medicine adjustment so he was sent to a psychiatric hospital for that to happen. They discontinued all medication and declared him competent and able to live alone. This without talking to the family or the NH or his regular doctor. I know this man, he's not competent, he is delusional, and it is incomprehensible to me that anyone at all would say otherwise. So now she has to go to court in a different state and get guardianship there. She could just let this go and go on with her own life but she won't because she loves her brother! And that's an important point that shouldn't be lost in all of this. We want to do what we can even though we didn't ask to be a caregiver to someone with HD and that person didn't ask to get sick. Anything can happen in life, only a child thinks life is fair.

So here's the thing with me. I am getting a little tired of studies about caregiver coping. They seem to me to put one more burden on our backs, to somehow develop some wonderful psychological coping style with makes us serene and happy despite all the hardship and anguish. And that's crap. We are losing people we love, we worry about our children, our health and finances have almost certainly been impaired and we have no time for ourselves and our needs. Of course we don't like the situation, but If we can manage to take care of our loved ones and stay SANE, we are doing pretty damned well. As my own therapist said, "Most people would be in a straitjacket by now if they had to cope with what you have had to cope with." And that applies to everyone in an HD family, not just me. So to me it's kind of an insult for people to do studies to assess how well we are coping.

How about a study of how laws and services could be changed so that we could have the support that Alzheimer's families get? That would be a good start

Marsha is %110 correct on all her thoughts, The first stage in SOME, not all is emotional, psych symptom which can lead to danger and SOMETIMES DEATH, as in murder. The Apathy is very hard to deal with also. We need to be taken seriously by the Drs, I know young adults who are dead now as a direct result of not being tested becuase the symptoms were psych and could have been something else, even tho the family had many Phd's in it. SHAMEFUL.

In order how things happened for me was as follows. I found out I was at-risk in 1996 and tested gene positive in 1997. I knew from the list of emotional and cognitve symtoms when I first read them that I was symtomatic before I tested gene positive. The test only confirmed what I was fairly certain of. But because HD clinic and Drs do not like to officially diagnose you until you have chorea and it is 100 percent obvious. I was diagnosed as having "soft symptoms" before I went to my first HD camp back in year 2000. But because most HD emotional and cognitive symptoms can be caused by other conditions and medical problems they always use words like probable HD etc. But once you have Chorea there can be no doubt it is HD. I had every single emotional and cognitive symptom on the initial list of HD symptoms I saw...I had no doubt I was symptomic back then. But most Drs are afraid to diagnose HD before there are physical/chorea symptoms. And given the high rate of suicide when people once people are diagnosed who can blame them.
I had to quit my job as a Home Support Worker back in 1997. I did not know until one year later when I first went to an HD clnic that I qualified for CPP. It was the HD Drs who applied for it and it was not only approved but back dated/paid to the day I quit. I was having problems with multitaking as well. I had balance problems transfering clients. I was way more easily irritated. I was in a high stress job and high stress marriage. There was alot of other HD symptoms I had back when I quit my job too, but the chorea was not present then.
My Drs advised me then that I should not be working anymore as stress was the worst thing I could have with the HD. I remember them telling me that if I could cut the stress in my life then and there that I stood to add years onto my emotional life later. I left my job and my marriage at that point. I unfortunately gave my marriage another chance which turned out to be a huge mistake but I did not go back to work.
So I have been on disability for all these years. The clinic "officially" diagnosed me after the chorea became visable to them about 5 years ago. All the professionals at the HD clinic all knew I had soft sign of HD but they will not make an official diagnosis until the chorea rears its ugly head. Many HD family have experienced this same thing.
Now with my chorea and my progression now just this year I became a PWD which is a Persons With Disability with the government.
So hopefully this explains things. You are not allowed to go to the HD camp unless you are symptomatic and I have gone 6 times already. I never counted the jumps and jerks as chorea until they came daily...Chorea is by definition involuntary movements but there can be years between the involunatary movement we notice ourselves and when the chorea actually becomes visable to others. My chorea has been visable for about 5 years now. There is a big difference between moving occationally, moving daily and moving constantly but it is actually all chorea. I called them involuntary movements until it became a regular daily occurance, then I started calling it chorea. I guess I was not accurate there as techically it was chorea the first time my foot jumped without my permission or by my order.



Edited 6 time(s). Last edit at 12/25/2011 07:22PM by Kelly B.

Wow Kelly. I bet maybe you see my dad's neuro, because she also would not diagnose him as having symptoms, until he got chorea, even though he was having balance and memory problems for at least two years before that. The neuro that i see, it went like this. I had been having memory problems, nothing else, except choking on water. I went to the hd clinic. I had trouble with the memory tests, he found slow eye saccades, which is a definite sign of hd, i had trouble doing the stick your tongue out test, and he noticed something wrong with my gait. And i was having trouble multitasking. So he ordered the bloodwork right then, i went back in one month later, and told i am hd positive, and that i am definitely in the early stages. A few months later my family doctor applied for my bc disability, and i had no problem getting it because of the very difinitive diagnosis that my neuro wrote in his report. My neuro says hd diagnosis is no longer based on chorea, he said it can be based on cognitive problems alone, or, psychiatric problems, or on physical problems.