Eric,
You seem to know alot about HD and sound like you have common sense as well. My husband has HD and we are in the early stages or the fight. He comes from a family of 5 children all inheriting the gene, 3 have passed already and his sister 13 months older is in end stages. In his home HD was the elephant in the room and kept pretty much in the closet. My mother-in-law is a saint and was the care giver for her husband and two other son's until they passed in her home. She did not have any real help just one Doctor in another City who phoned in meds for one of her son's the other was not on anything.
So we don't have any history on medications or trials. We are going to the convention in Phx. and one of the speakers we wanted to hear was a Dr from the Mayo Clinic talking about drug trials. I am so glad I read your post it was an education. I did not know that we would have to stop our anti-anxiety medication and not sure if that would be something we would be willing to do, we are still trying to come up with the right "happy pill". Anyway I just wanted to say Thanks for your informative post.
Hope your day is a good one,
Debie



Edited 1 time(s). Last edit at 06/03/2009 10:05AM by Debi.

Hi, Debi,
Whether or not you have to stop taking a drug depends on which med will be used in the trial. If the two drugs are working to counter each other then the trial would be flawed. For example, Tetrabenazine cannot be taken during or for a period before the ACR16 trial because both have an effect on dopamine and work counter to each other. However, there are many drugs that Tony could have continued. As I have said, he was not taking anything except supplements and they were all fine and he still takes them. So the drugs that will not be allowed depends upon which trial a person is in.

Debi, people don't always have to stop their medication to participate in trials. It depends on whether there might be confusion as to what caused the results - the experimental drug or the drug the person is already taking.

Ron, for heaven's sake post whatever you'd like to say! We are all in this together.

I am deeply grateful for everyone who has been participating in clinical trials. We have choices and I hope that people wanting to do so will find the information here and on the Lighthouse and on the HDSA site helpful in choosing the trial that they are most hopeful about and which meets their needs.

I am also grateful to Maggie and Will for posting their stories about participating in clinical trials. This is very unfamiliar to most people and your writings are very helpful. I know I am always anxious about unfamiliar situations.



Edited 1 time(s). Last edit at 06/03/2009 12:43PM by Marsha.

Good points, Marsha!

jl

ERIC!!!! how bizarre and what an exciting thread. Its 2am and i have GOT to go to bed, but im writing this dead quick.
Amoungst all the madness at home, strangely, i gotta top up my "work" degree (like im gonna manage that eh! - but my boss is nice so i should be supported).
I signed up to do this "research module" (i hate research, but hey). So, for my assignment i gotta critically analyse a piece of research (marsha, please do it for me, im all in to plagerism personally - sod personal development!).
So, im at home, looking after the youngster, hubs looming around being argumentative, googling various articles: and i think... mmmm... HD carers and how utterly rubbish it is that there is such crap support outside of the hd community.
so im surfing away (between cancelling all the things my hubs chucked on his bank card when he got "bored" and i come across some stuff about carer "burden" being targeted as a research area here in england.
(at this point i think: oh shit, are we THAT behind that we got to pay money to establish the extent of carer burden - i would do the bloody research for free when i do my discertation!!)
But some turd would just snub it as "qualatative" and rubbish it as unreliable anyway.
So, i set about finding an article on carers of people with HD, in order to compare my own experience and also considered, that if i gotta analyse some research to the tune of 2000 words, best do it on HD!
so i find this article..... and blow me... yes it raises some good points, but it also completely misses the point when it comes to the actual lived experience of being in a hd family!!
its bizaree. i acknowledge that it probably isnt "good" for me to use this peice cause its so close to my heart: i bet i end up doing the work on depression or something, but, erics point is made perfectly: the researchers took 10 people in glasgow, all over 40 and mostly over 50, who were not involved in any other studies and used them to base assumptions on about people (not) coping.
I couldnt believe it. I did some further investigation and looked at the paper breif, before it was submitted, and the researchers had apparently made a MISTAKE about someone who had tested gene positive and declared them as "at risk" - they had to amend their own mistake before it was approved for publication.
For goodness sake!!!!!
if anyone is interested in the article it is called:
"Avoidance as a strategy of (not) coping: qualitative interviews with
carers of Huntington's Disease patients"
(Alison Lowit1 and Edwin R van Teijlingen*2)
The earlier point of HD families, living day to day and trying to negotiate the battle field that is the lack of resources, lack of clear diagnosis and sheer diversity in presentation was in no way reflected in this article.
GRRRRRRRRRR.
Yet, this research is published and "carer burden" is a targeted area here in terms of research......
they gotta get it right, not make assumptions that meet their OWN hypothesis and publish them as facts....
im sorry if this doesnt appeal to all on here and sounds like rambling.
I thought i wasnt interested in research. but apparently i am. x

I read that article and I found it bizarre too. I thought, Really? They are carers and they manage to avoid stuff? And I wondered what was the matter with caregivers in GlasgoW.

By the way, I am speaking on denial, uncertainty and decision making in HD from a family perspective at the convention.

really marsha!!!!?

but thats so exciting. im thinking of tearing apart the research article in my critique and using it and posting it off to glasgow.
i would be so grateful if you would let me have any references you have or.... dare i ask.... if i can quote your speech in my critique of the article.... ie marsha points out that blah blah blah...... (so even if there is a link here i can reference that would surfice!)
i got some ideas of how im going to pull it apart on a few levels!!
we are so archaic in england.
i will understand if its unpublished and your not to comfortable with sharing stuff like that, but i would be so interested in your perspective, and from what i can see, no one has actually critiqued that article. but it was so wrong on many levels in my eyes. they missed the point!!!

its very topical here, considering such "research" may be quoted in looking at carer burden and this was highlighted as a "novel" piece of research. i find it scary!!!
(i would appreciate any advice or pointers in where to look for some REAL stuff!!!)
Carer burden, being so topical needs to address inappropriate service provision and the stuff we have been discussing re not diagnosing.
Not just making assumptions that the hd community dont talk to each other!! look at us!!!
ps. i note they had 100% update of the 10 people interviewed: cause they were all individually picked as people likely to respond to the study!!!!!!!!!!!!!!!!!!!!!!!!
kind regards.



Edited 2 time(s). Last edit at 06/04/2009 05:52AM by Marsha.

Janet Williams does good research on HD families.

[hdlighthouse.org]

In this article we have carers who saw the disease before the professionals!

I re-read the Glasgow article. It certainly seems as if the authors got it right based on the extensive 'avoidance' quotes. Is there something different about the culture of Scotland or the history of HD families there which results in so much denial and avoidance? Maybe these families are just not getting good help and support from the professionals.

Maybe I am biased because obviously I interact with people who aren't in denial about the disease being in their family and DO discuss it (at conferences and in chatrooms and right here on the forum). Maybe there are a lot of families out there that I don't meet because they don't engage with the community because of denial and avoidance.

I couldn't cope in isolation.

Even though the authors do seem to have gotten the theme right, I wonder if they probed more it might be a bit different in places. If the carer is denying symptoms in the spouse and putting off talking to the doctor, that is actual avoidance behavior. In contrast, the issue of children and 'avoiding' thinking about their gene status is different. What would be non-avoidance behavior? Whatever the status of our children is, it can't be changed now and it's not our decision whether they test or not or when. Wouldn't all of us say we try not to think about it? But at the same time, wouldn't all of us say that we DO worry? Both are true. We couldn't function as carers if we spent too much time dwelling on the future but if there's some way to truly avoid thinking about it, I don't know what it is.



Edited 1 time(s). Last edit at 06/04/2009 06:04AM by Marsha.

Hi Everyone
Just a note of apology to everyone for my rant on this thread.This site is about support, and my post was uncalled for. To all of you who are being proactive, my hat is off to you.Please rest assured that it will never happen again.

Sincerely
Ron C.

Ron, I have said many times on this forum and others that I credit YOU and Peter for getting me through the long months when Tony was angry, paranoid and at times just down-right scary. Nobody knows more about support than you do, my friend. You have nothing to apologize for. We all rant from time to time. It is the nature of the beast. With love and appreciation, Maggie

I agree that anyone dealing with HD would have to be almost inhuman not to have to rant on occasion!

jl

Marsha, im not going to use the article for my study: "too close to home".
However, your point about cultural aspects of glasgow is important. A headbutt is known in england often as a "glaswegian kiss"... there are areas of severe social deprivation. Alcholism, unemployment and family dynamics in terms of coping would not be about planning in 20 years, but often living day to day for families even without HD.
With reguards to the study, all recipients responded as they were the only ones invited as identifed as likely to respond to the research.
In order to participate they could not be taking part in any other research.
The majority participants were well over 50. Services available in Glasgow and in england generally cannot be overlooked.
Also, although some families had indeed gone through a stage of denial (as with any greiving process). They were generally talking of this retrospectively. Furthermore, when they discussed children, they were talking about it being "too difficult" to contemplate and actually were not actually in a position to PLAN for what might happen. Particularly when they were already dealing with what IS happening!
They were not given the opportunity to clarrify the researchers perceptions of their responses: often their is a dignity in eventually accepting that which you cannot control or prepare for. The cultural aspects of the individual families and living in glasgow is not representative of HD families, in my view.
But yes, perhaps i am biased too!
However, these people are probably based with lack of resources: many support groups set up in england fail due to lack of uptake: however, access problems and lack of respite and care provisions here would also influence reduced uptake and attendance at such a group.
Offering inappropriate facilities or groups, then stating that they are using "avoidance" as a coping stratagy is unfair.
Some of the statements made clearly point towards frustration and fear.
Also, the interviews were carried out in the carers home: where was the pHD? how likely is the carer to talk openenly about their fears for thier children for the sake of a researcher, when in fact this may open a "can of worms" for them.
Perhaps their coping is not "denial" but depressive realism: they know the future and that it is out of thier hands.
They also know they are dependant on an inadequate health service to manage their relatives, and in reality they will probably be dead before long term services are required.
How are they supposed to "plan" for the futures of there "children" who are likely to be in their 30s?
There are so many other points i could make here about the researchers interpretation of the statements made: however, it seems they sought out to look at the topic of denial and used this area: they avoided other areas and acknowledged this.
wether the denial was retrospective or in fact NOT denial but not having the energy to reach a service that is unlikely to meet their needs until it became absolutely necessary?
Many scottish people are prideful, courageous and "as it is" people, very direct.
but also look after their own and not necessarily used to or expecting of a good nhs service.
i know that not everyone will agree with this.
However, i do have experience of working with a specifically scottish population in mental health and there needs very much differ from those for example in other areas of england.
Crime rates are high as is alcohol and drug use. It may be that people are more likely to "take a drlink,son!" (and this would be very socially acceptable) than acknowledge ANY mental health problem or seek help for it, until crisis point.
Heart disease and associated problems caused by alcohol, smoking and teen pregnancy are high. Education is not particularly outstanding.

but there are so many variables that have not been acknowledged within this research.
Like i said, it raised SOME good points, but sought out to prove its own point.
i reckon the people who participated should have been given the opportunity to clarrify what they meant.
furthermore, i have been at the recieving end of being asked a structured questionaire, in my home, about my experience as a carer: i rated my scores lower, but the scorer talked me into putting them higher!
strrrrannnnggggeeeee. Worrying really, cause this was my baseline assessment: it just concerns me that individual interpretations of how people "cope or dont cope" do not take into account how, perhaps, denial is NOT denial.
But serenity.
ps. hey ron. chill. i just ranted about research most people probably never read!
pps anyone from scotland or glasgow: im not having a "go" there are many assoicated strenghs of the scottish population, but i can back up what im saying with research!!!

nutpea Wrote:
-------------------------------------------------------
> If no completed trials then no drugs. That is the
> bottom line.With encouragement from Barb and
> Maggie my wife is in the ACR 16 trial. Mark

Mark, it's good to see you, and so glad you got Marianne into the trial...how is she doing on it?

I think i will try and respond to Eric's question, as to whether there is a disconnect between researchers and patients and their families. Here, in vancouver, the researchers, are also the doctors. At the molecular genetics centre, there is the Hayden lab, the Leavitt lab, and the Raymond lab. These are the three hd research labs. Each lab is working on something different for hd, and they each have a staff of researchers under them. In michael hayden's lab, there is even a young man, who is a researcher, who is hd positive himself. How much closer could you get to having a researcher who cares about a cure? Michael Hayden himself, won a prestigous award this year, i believe the prize was 20,000 dollars, and when he found out there was a cash prize, he did not take it for himself, but put the whole thing into his lab. Michael Hayden not only does research, but also teaches at ubc, and he sees the clinical trial patients. So he is a researcher, a teacher, and is involved with patients, not just with mice like some researchers. Dr Ramond and Dr Leavitt, also, researchers, teachers, and they are the two neurologists that see all of the hd patients. Dr Goumeniouk, is a professer at ubc at teaches psychiatric meds, and he is the hd psychiatrist, and sees all of the hd patients. I've never experienced anything but the utmost compassion and care from each of our researchers/doctors. And so i know that in this instance, how the researchers see the patients, we don't have a disconnect here. I also think not enough credit is being given to all the researchers. I truly believe that they all care very much. This has been my experience, and it's a good one.



Edited 1 time(s). Last edit at 06/04/2009 09:31PM by Barb.

I think maybe i have a question to ask too. If we think there is a disconnect between researchers and hd families, could we be creating that disconnect in our own minds? What i mean is this. I have the experience of seeing very compassionate and empassioned researchers. Maggie, dcb, and will, have all said many times how their experiences with the researchers, are very positive. So what i'm wondering is this. We have several accounts, of not what people think could be, but what they have actually experienced themselves. So i'm wondering, if some were to feel the researchers have trouble seeing the human side to hd, are there actual experiences here to back that up? Or is this just a fear in our own imaginations? I know many have bad experiences with "the system", getting help for someone with hd, but i'm talking researchers and their connect with hd families. Has anyone here had unfavourable experiences themselves with researchers, and would like to share that, or is this just us creating a disconnect?

And i think one more question here is, is there a disconnect between trials and the hd community, notice, i didnt say researchers like in my last post, but trials. Yes it's researchers that do the trials, but that's not what i'm asking. I will talk about my own personal disconnect with trials. I believe it's a communication problem. The actual trial announcements are communicated poorly. So i will speak from my own experience. When the dimebon trial was announced here, i was quite excited about it and interested, and wanted to know more. So, it was announced here, but when i asked questions, nobody knew any answers. So i was directed to look at the link for the trial, and it gave a phone number if you wanted more information. I will say, that for someone with hd, it's a very difficult prospect for me to try and phone someone i don't know. And i imagine for a caregiver, they don't have the time to go to that extra work either. I find it difficult to have to make a phone call to someone i don't know, but finally i called my hd clinic, and my doctor told me i would have to go off my memantine to do the dimebon trial, and he did not recommend that for me. But you see, for me i had to phone someone i knew, not a stranger. What is lacking is this. A trial link will usually only give you a little information, and then says if you want more info phone us. That is a daunting prospect for many of us. What seriously needs to be done is this. There needs to be a lot more info on the trial link, so that a persons questions are answered without them having to call someone. It is the fear of the unknown. People like to see a good set of info, so they can thoughtfully make an informed decision. A trial link will say something like this, if you are taking certain meds, you may not be able to do this trial. Well, take away the unknow, tell us what those meds are, tell us much more about the trial, and then maybe people wont feel so intimidated. I also think, it would be really good if Robi could check in on the forum more if he's able to, so when something like the dimebon trial gets posted, and i ask a whole set of questions, that nobody is able to answer, there should be someone with answers for us. And i have to say, i've really liked maggie sharing her blow by blow on their trial experience, it is taking away the unknown, and certainly answering some of my questions and helping me.

Eric - Thank you!!! I really appreciate that you have pointed out the obvious, but often missed reality, of pre-symptomatic testing. The research and scientific community is at times very direct with the HD community about the problems they have recruiting for trials. Often this directness, such as in the keynote speech, is directed at those who haven't yet tested. The reality though is that until we have symptoms - we can't participate anyway, tested or not!

I was certainly affected by the keynote speech, as I was by the dialogue and reactions on this forum in response to the speech. I really appreciated everyones opinion. It made me really look at myself and question if my reasons for not testing were selfish (they are), I thought about my young nieces who are also at-risk and decided I did want to be a part of the solution and do whatever I can to participate in research trials. I logged on to the HD trials site and began looking through the criteria to see what I would qualify to participate in and which studies were near me- luckily I live within 5 minutes of an HD Center of Excellence. I found that the only study I could participate in before I was symptomatic, regardless of if I'd tested or not, was the Predict-HD Observational study. I'm already in the Predict study (they have tested me, but just didn't give me the results...Yep, I read into everything the neurologists and radiologists do and say to me looking for a clue about my HD status - even though logically I'm aware they probably don't know).

Bottom line, until they find a biomarker that accurately assesses the early neurological changes that are present before clinical onset - then testing has nothing to do with participating in trials. I wish researchers would be direct with those at risk about this, and shift their recruiting efforts. I would have been livid had I been tested because I'd decided I wanted to be 'a part of the solution, only to find out I couldn't participate in a single study!!

The decision to test or not to test, in todays reality, SHOULDN'T have anything to do with participating in a trial unless someone suspects they have symptoms. To be prudent, I'll undergo a neurological exam annually - and the day they tell me I have a possible symptom, I'll test and enroll in a study if its positive. This is ALL anyone who is pre-symptomatic at-risk CAN do until solid biomarkers are identified.

Off to the HDSA Gala Dinner in Phoenix Hope to see some of you there!

~S



Edited 1 time(s). Last edit at 06/06/2009 08:02PM by missmolly.

I think i personally am feeling very uneasy about this whole new hd ready campaign that seems to have suddenly hit our forum. Many times people come on here asking, saying they are thinking about testing, but are aprehensive, and what should i do. I always find that one of those threads is so good and supportive. Many of us share, myself included, that for me, testing was a very positive experience, but also, if a person seems to anxious or depressed, many times people will share and say maybe you're not ready yet. But i find that this one topic we are all very supportive, and try to help that person decide what is best for them at this point in their life. I'm finding the hd ready thing has a pressured guilty feeling to it, and i don't think anyone coming here should be hit with this new trend. It is a pressure tactic, and i don't like it. Even the questionare on the other thread, is not an unbiased questionare at all, if you read through the whole thing, there is one motive in that questionare, it is another pressure tactic, for hd ready. I don't like it. People living with hd in their lives, do not need this. This is a complete pressure tactic. Hd is hard, both for those that have it, and for those that are scared that they may have it, and to have this pressure added as well? I am upset, because what people in the hd community need is support, people with hd, caregivers, and their families. As far as i'm concerned, hd ready can stop right here and now, with whatever selfish motive is behind it. Do you know that what hd families need more than guilt and pressure, is support? Do you know that i personally, know two dif hd families on this forum, and in each of their families, their teenage child has tried recently to commit suicide, because they see hd, and are scared of their future? Can we focus on those that are hurting and scared? Whats with all this pressure, of suddenly, us people that have had great misfortune, are now told that us living in our own personal hell, and just trying to live, now we owe others. Trials, testing, etc, are all good, and when someone does trials in the hopes of helping others, thats even a bonus too, but dont ever make anyone feel that they should not put themselves and their family first, and that they owe it to others. What we owe is nothing. And what we give in loving and supporting each other is a gift. I am getting very sick of this new trend, i don't like, i don't like it at all.

I agree with you barb. I think as trials become available there is going to be a push to participate. So i think we will have to be mindful that there are some who as much as they might like to participate they will be of two minds and we will have to be accepting of the people who want people to participate and those who decide that testing is not in their interest.

It's a topic on the forefront here at the moment and probably here to stay. But when an individual brings up whether they should test or not, I think it will be spoken of as way to be proactive or empowered if they decide to test. It's different when you speak of the group as a whole and you speak to an individual. It might be nice if more people in the entire group choose to participate in trials, but it may not or doesn't have to be a preasure point to a person deciding to test. It might be just one thing to add to the plus list for that person,but not in the thinking process for the next person. I think we can be supportive in either direction. This can't be THE issue for testing. I never have to make this choice for myself. Unfortunately that makes it hard for me on the surface to take a strong stance to not be somewhat in favor of this being at least one reason to test. But even I can't pushit it hard. I am afraid there could be some who become single issue about this and push too hard at the expense of other considerations. On this board.. i think it's got people who are deeper that that. Anyone who is overly enthusiastic will dial it back if asked to if they are being unfair in implying someone is being selfish for not testing. Let's let the newness wear off and see if we don't find the comfortable middle ground where this can be spoken of in perspective. I agree barb this is new and how we address the topic is in the growth phase and needs refinement..

As you all know I just got on line about a month ago. I am a bit confused though sometimes I dont know if I can voice my opinion or even if I should I did the one time and I think I stepped on somebodies toes and did not mean to. I am not up on the political world associated with HD and I am trying to learn more each day. As for me I grew up with HD in the family lost my mother, sister, and now my brother just a month ago. Im right now dealing with to get tested or not to get tested. I have a 22 year old daughter and if I knew everything I know now back then I would have been tested before I had children. I was young and I did not want to face any of this, It wasnt until my early 30's then I started waking up to the fact that this is here and was not going away any time soon. So now after having my daughter and plan on not having any more children I dont know if I should be tested or not. I know it is my understanding if I would be tested and it would be neg. it would stop and not carry on to my daughter. Can you particapate in trials if you are not sure if you carry gene or not? Or do you have to be tested first? Been going crazy thinking about to do or not to do for a very long time???? Well thats enough of not making any sense at all, sorry.