HD Australia

Hi everyone, I have been battling now with the realisation that I am at risk of HD. I am 39 years old and am aware that my grandmother had HD, and for some reason I have not really thought about it or addressed it until now. Perhaps it was at the back of my mind? 3 years ago I suffered my first episode of anxiety and depression, did all the hard work, and started cipramil (anti depressant) and made recovery. I am have similar symptoms now, although different. I am completely lacking in motivation, feel that my cognitive abilities have declined, and have come to the assumption that I have HD. This has severely impacted my life in the past month in that I have not been able to go to work, and am scared out of my mind. I have been reading everything on the internet and all the forums relating to HD, and whilst it helps to be educated it also scares me more. I feel every symptom! I feel as though my life is being destroyed. I just brought my first home 3 months ago, and now I feel I have made a mistake and am worrying about how I will pay for it. I am also in a job that I used to love, although have been wanting out for a while - I dont want to go back, and seriously considering my resignation to be able to concentrate on getting my life on track and getting better . I took the step today and made an appointment to see a neurologist referred by my GP. The earliest appointment is 26th March! I am dreding the worst, and dont know what I will do if I test postiive. At this stage, my mother does not show any symptoms of HD, although I am aware that late onset is common, she is 61 years old. Anyhow, that is enough for now, I feel that I need to get amongst the community, to give and recieve support that we so badly need. I guess we are truly the only ones who understand what it is life to go through this.
Thanks for listening.
Jo

Hi Joanne,

Welcome to the forum. Hopefully you'll find as welcoming and full of information as I have!

Sounds like you're going through a pretty scary time, perhaps the neurologist will be able to give you some answers one way or the other. Good luck, please keep us updated with how it goes?

Cheers,

Tania

Hi Jo and welcome to the forum, sorry about you needing to be here!

I know how nerve racking it is to be at risk, living with those fears and scenarios running through your head 24/7! It is a horrible experience and can only be thought of as torture! I too believed I had all the symptoms of HD, but I tested negative. I was so convinced I had HD that I didn't believe the test results when they did come in, and requested another test to be sure! Stress can produce the exact same symptoms so if at all possible, relax and go easy on yourself for a while! I'm not saying you don't have HD - only a blood test can determine that, but I do know first hand the effects stress has on sleep and emotional stability - thinking HD 24/7 really can send you round the twist!

I do not know where you live, but you can speak to a genetic counsellor any time! In Queensland the protocol is to go to your GP to be referred to the HD clinic - you then see the genetic counselor and geneticist (to explain the process & establish a family history of HD), psychiatric review (to ensure you are stable enough to handle the results and aren't being bullied into testing by someone else) and then the blood is drawn and several long weeks later back to the counselor to receive the results. If you go to the closest HD clinic in your area, you are often able to combine several of these appointments in the one day (scheduled one after the other) and cut the wait time down considerably! A neurologist can order the test without following this protocol if you are considered to be symptomatic already, have a strong case for believing you have HD or showing other neurological problems. I would highly recommend some counselling still as it is pretty heavy stuff and not many people understand HD or can give you the support you need during this time! Anti-depressants are a good idea too, especially if you are already prone to depression!

If your mum is 61 with no symptoms, she could be HD free or could have late onset HD. Hopefully she is HD free, but you won't know unless she gets tested. My dad is considered to have late onset HD, he was diagnosed at 59 but his symptoms were noticeable, we simply didn't know there was HD in our family and explained his odd behaviour on his abusive childhood, the start of alzeimers, industrial deafness... and the list of excuses goes on. Once we became aware of HD, it was blatantly obvious that he exhibited many symptoms, although not so obvious physical ones. My sister started depressive episodes at 39 and was diagnosed bipolar at 40. I guess what I am saying, is that if you are aware of HD and have had the opportunity to observe your mother recently in her 60's and she honestly doesn't show any symptoms, then it is less likely that your issues (at 39) are HD related. Stress really does cause the same emotional, cognitive, and even physical symptoms! I hope you can hold on to that hope as you go through your testing - not a guarantee, but something to hold on to during those dark and lonely nights.

Take care and let us know how you go, Shy

Hi Jo - welcome to the forum. We all know how you are feeling - it's a worrying time. I didn't know about HD in our family until 2006 - but once I found out it explained a few things about my mother's behaviour when she was alive (she died of cancer in 1997 at age 70) - though she was never diagnosed or tested for HD - of the many doctors she saw over the years - and the many things she had wrong with her - nobody suggested HD, though she got plenty of other diagnoses and medication and treatment for those.

I am 61 - the same age as your mother. I'm assuming your mother hasn't been tested - is there any chance she would be willing to be tested? I'm just thinking if she tested negative, then you wouldn't have to worry and go through the whole agonising process. Particularly as she appears to be displaying no symptoms - this could be a good sign, though I admit that late onset could be a possibility.

I agree with Shy - if you have a nearby HD clinic or even a genetic centre (in a local hospital perhaps) - maybe you could get an earlier appointment to talk with them and get the ball rolling (the ball seems to roll VERY slowly once you start the whole process). You could still see the neurologist in March - even if just to get his/her opinion and a baseline reading of your present level. If you test negative - great, you probably wouldn't need to go back. However - if you're aware of a decline in your cognitive ability and suffering from apathy etc - it could just be caused by stress. But I have to add that when I tested positive in 2006 - I felt vindicated that there was something wrong with me after seeing various doctors and specialists over many years and being told I was just suffering from stress, and being treated like a virtual hypochondriac. Of course, that feeling was brief - I would have preferred a negative result, obviously.

I know there are other people on the forum who displayed all the symptoms and considered they were HD positive - only to have negative results - so it cuts both ways.

Just ask if you think we can help in any way with information etc. We all know the feeling of being scared out of our wits - the sooner you start with genetic counselling etc, the sooner you can find out if you have reason to be fearful - hopefully not. Just take one step at a time, and I know this is difficult (I can't do it) - try to stop your mind racing ahead with all kinds of "what ifs" - even if it's just veggying out watching TV, reading, walking - anything to take your mind off it.

Hope to hear from you soon.

Best wishes,
sonnie

Thank you for your replies, I have read through your past posts and can see that you have all been through very trying and traumatic times becuase of the effects of HD on our lives. You are all so strong in supporting all others that come here with the questions and just needing to talk, it is truly admirable. My mum has not been tested and does not wish to, she has implied to me that she would not want to go on with life anymore, if she found she was postive. She is happy to live day by day in the present - and I respect her decision. As far as I can see she does not display any symptoms. She works and is active in life. The only thing that bothers me is her attitude towards me. We are not close. When my mother and father seperatred, she kind of went her own way, I felt as though I had to make all the effort to maintain the relationship. Even now, when she knows Im scared and not coping well, she does not always return my calls or messages. She has been like this always, I dont beleive that it could be considered a symptom, although who knows.

Thankfully I do not have children, although it is something that I would like. I lost a baby last year, and strangely HD did not come to mind, I was overjoyed. I think that if my test is negative, I will try for a child again. I have a very supportive partner, who I love dearly. I feel guilty that I have loaded all of this onto him. Sometimes I try to push him away, because in the event I am positive, I do not want to ruin his life.

I am interested to know, when symptomatic does it become difficult to do things such as writing a post? Do your mind and intellectual skills remain in tact in the early stages? I guess it would vary.

I am from Melbourne and will be an ongoing regular in this forum. I feel strongly in supporting and doing whatever I can.

Talk soon, Jo

Hi Jo,

Good to hear from you. I'm really sorry about the loss of your baby last year - no wonder you've been feeling depressed and anxious - that's one of the worst experiences a woman can go through.

As far as your mother goes - yes, that is her decision not to be tested, and if that helps her continue on with her life - well and good for her (but it does sound a bit selfish to me - I only got tested because I have 2 children in their late 20s - no kids yet - and if I'd been negative I wouldn't have bothered mentioning HD to them - I'm not sure if I would have tested at my age if I had no children - but probably I would have - it's certainly made a lot of things in my life click into place).

Although I'm the same age as your mother I no longer work and have basically shut my life down - I really only go out for appointments and am content enough staying home. I did work full-time teaching for 36 years until retirement. So maybe that's a good sign that your mother still works and is active and you think she has no symptoms.

About your mother's emotional detachment - my mother didn't talk to me for about 6 years (early 1990s) - until she needed me as a taxi driver/shopper etc when my father died unexpectedly in 1995. I continued on in that role until her death in 1997. If you want to know about maternal detachment - on her deathbed I told my mother that I loved her. Her response was "We don't go in for that sort of thing in our family" (they were her last words). I didn't ask the obvious question - saying you love someone, or actually loving them? - I didn't want to hear the answer to that. I've been seeing a psychiatrist for the last couple of years trying to come to terms with the whole HD thing - I told him about my mother and asked him why. He said parents are meant to love, nurture and care for their children - but it doesn't always happen (that explanation was cold comfort for the difficult relationship I'd had forever with my mother). I must add that I didn't know about HD in our family back then - so maybe her behaviour was something to do with HD - because if I have HD, she must have had it also.

If your partner is supportive I think you should allow him to be close to you, don't shut him out - if you read Daisy's posts - she's been on both sides of the fence, as a support person and also as someone going through the HD testing process. If your mum isn't close to you - I think a supportive partner is great - whether you test positive or negative. Let him be the one to decide if he needs "time out" occasionally - make sure you both keep talking with one another and expressing how you both feel.

That is the exact question I would like answered - "When does one know it's all starting to drift away". I've asked my psychiatrist - but he says I'm fine because I can carry on a conversation with him for 50 minutes every couple of months. But I know myself and the changes that have happened - a lot of things I used to think were just "me being me" or things that I've chosen to do - I now realise were probably HD symptoms. I looked on the US HD website the other night and found a list of 14 "soft" HD neuropsychological symptoms - I could tick all the boxes. For example - driving into kerbs - I've always had trouble judging distances but thought that was just the way I was, no big deal, just replace hubcaps every so often. Getting lost, reading maps and making sense of them, losing my vocabulary, mixing my words up, forgetting what I said a minute before, loss of motivation, no concentration - I wouldn't even attempt to read a book these days, hard enough getting through the newspaper - all of these things have been happening for many years but seem to be speeding up over the last couple of years and getting worse. Just today I realised I don't remember my 9 times table any more - but rationalised I really don't need to know that.

Perhaps someone on the forum can answer the question if they've had experience of this with a family member. Is the person aware at the beginning that they are losing all these skills and that their cognitive ability is declining? At what point is one no longer aware of the changes taking place - is there some kind of signpost that tells you this is very near? How rapidly/slowly does all this happen - I know everyone's different - but I'd appreciate hearing other people's experiences of the changes wrought by HD on family members (I know this is a topic that some people might not like reliving - so no pressure).

Jo - you ask if HD people can still post on the forum - that is one of my big fears - I am aware that there have been changes, but maybe I'm not aware of all changes and perhaps I'm sitting here typing away and posting it on the forum and it's just a lot of gobbledygook. You might have noticed the time of my posts - I have trouble sleeping and get on the computer in the early hours.

I see you live in Melbourne - is the neurologist you're going to see Dr Churchyard? Forum members speak very highly of him - he seems to be the HD expertise neurologist. Perhaps other Melbourne forum members can suggest a HD clinic/counsellors etc to you.

Take care,
sonnie

Hey Sonnie - your posts on here are definatly not gobbledydook (man I had to check 3 times to see if I spelt that right and I don't have HD!!!) You make a very considered and thoughtful post and I enjoy reading about things from your perspective! Keep them coming

Sorry to be so late in welcoming you Joanne, couldn't log in after cleaning out computer cookies and trying to find my password again.

I am sorry you have to be here but glad that you are. I am not a HD person but obviously have had family issues with it. The questions you ask are so hard to answer as it is never black and white. They are questions we see time and time again and have asked ourselves too.

Your best step is to seek guidance from the experts, have a support person handy for those nerves and do what is right for you. Even if you get to the point of them taking your blood and decide you don't want to know just yet, they will hold off giving you the results until you are ready. When the results come in they can sit there for as long as you want until you feel ready to be told. So you can get that over and done with and then decide what to do next. If you want to wait a few years you can, if you want them as soon as they are in you can. If you ask the Dr not to tell you when the results are in he/she will comply. It is totally your choice.

I am so sorry for the loss of your baby, believe me I know what it's like to lose a child.

You will find a variation of answers and advice on here and all of it will help. It will all be valuable and people here understand your fears, your symptom watching etc as we've all been there.

Let us know how you are going, what you decide and know that whatever you decide to do is right for you.


Buddybird