HD Australia

Hi All,

I'v known for the past ten year that i have HD and choose to ignore it. its only been recentley that i'v had to confront it and try to deal with it. (not very successfuly). Im 30 years old with two children and scared to death. I feel so lost and alone. I dont know anyone else with the disease or in a similar situation. The guilt i feel for what i am going to put my husband and children through is crippling.

I have lost all confidence in myself. I'm trying to plan for the future but I dont know what to do? Do I quit work so we can have more family time and I can to some of the things I want to do before it is to late? or is this totally the wrong thing to do. I dont know. I'm finding it very unsettling not being able to have a time line or some idea of when i will get symptoms, its all so up in the air.

I really feel in a dark place at the moment, I need to know who people live with HD because at the moment it is affecting everything i do and it is in my thoughts 24/7.

I hope i havent dumped to much on you all i just need to unload at least a little.

thanks skye

Hey Skye,

You haven't dumped too much at all...i think you describe the realities of HD really well.
I think it can get really tough when you hit around the 30 mark! And the lack of "timeline" can be torturous As much as there's a sense of "knowing" in gene testing its still all so "unknown" !!

I had my kids being at risk, and through not having any other connections or support, it may have looked like i was just sticking my head in the sand a bit, but once i hit close to 30 i felt more of a need to get prepared and face this. Which is why i got tested. It can totally consume all your thoughts and days. I tested negative, but i don't know if that really stopped the thoughts, as my 3 brothers are positive, but i guess it allowed me to try and be more prepared for what lay ahead.

I think the biggest thing ive learnt through everything is that i need to be connected to other people living with this disease. For most of my life i didn't know anyone either...but once i did meet others it changed my whole outlook and perceptive on things. Ive made some great friends and learnt so much from other people...it truly has made the world of difference for me.

So your doing a huge thing reaching out and looking for support.
Sounds like you have some beautiful kids and family .

There's a great article written by Tony on this forum about being gene positive and some of the issues you've raised..you can view it at
viewtopic.php?f=6&t=530

Your not alone in how you feel...I hope you are able to get connected with others facing similar issues to you and also reclaim some head space back for you and your family .

Which state are you in?

I hope joining here helps!
Michelle

Hi Skye - I'm glad you've found us here on the forum. You can "dump" as much as you like on here - the rest of us do - it's a great outlet for getting your thoughts and concerns out of your head and written down.

It's also a wonderful place for support - I think you'll find others in your situation (similar age, with kids, scared out of their wits about being symptomatic and what the future holds for them and their family) - it's a help to know you're not alone, even if that's how you feel right now. Hopefully you'll link up with various members who can let you know how the HD journey has been for them, and ways of managing and coming to terms with the whole thing.

Can you tell us what happened recently to make you have to confront HD? It's normal to feel guilty (at least that's how I feel) - but you have to look beyond the guilt - there's no point beating yourself up over it.

Where do you live? Are you able to talk to a counsellor or doctor or somebody about how you feel? Usually a third party who's not involved can see things from a different perspective, and help you with strategies to cope and manage how you're feeling.

I hope you find some members on this forum who can help you with their stories of how they cope with the realities of HD. If you have any questions - please let us know.

All the best,
sonnie

Thank you so much, I have tears rolling down my cheeks, they are happy tears something i havent felt in a while. The power of 2 responses. I dont know that i can describe just how i am feeling right now. The unknow path that i am on just became a little clearer i can see the help along the way. I can feel my heart pumping again, a smile is spread from ear to ear.

When I was 19 I was told that I needed to best tested for HD as my mother was in middle stage of the disease. (Its a very complicated situation, i had had very little contact with my mother for many years). So not knowing really what i was in for got tested and was positive. I new very little only what i had seen of my mother and that was very limited, therfore it was very easy to ignore it for so long. When i started to approach 30 alarm bells started ringing and the more research i did the more i started to panick. late last year i went to brisbane to see Dr Iris Simpson (very lovely person). The clinic was excellent, but I do feel now that i have even more questions. (my mother is in the very later stages of HD. she is only 53)

My children and Husband mean the world to me. I am very torn with the question do i tell my children whats happening with me or wait until i further progress. My daughter is 9 and my litttle boy is 8.

I live in Northern NSW and as yet have not found any support. I will keep trying.

Thank you once again.
skye

Hi Skye,

I think you have hit the nail on the head - concentrate on the wonderful things in your life - your children and husband. Try to take it a day at a time - I know this is difficult and HD can overwhelm your whole life.

Quite often - I'm not sure if it's HD or not - there have been family problems (mainly parent/grownup kids) in HD families. I know in my family there were periods of years when my mother would not speak to me - despite my overtures she wouldn't budge - she died in 1997, but I still wonder why she was like that. I only found out in 2006 that HD was in my family - but looking back I think HD may have contributed to her strange behaviour over many years.

Personally I think your children are way too young to understand what HD is. Are you showing obvious symptoms that they are aware of? If yes - perhaps a small talk that mummy isn't well - but I'd be very careful not to alarm them at such a young stage. I think it would be good if you could get professional counselling advice on how to deal with this situation in regards to tellling your children. I also think that there is information on this topic online if you check out the HD websites in Australia and overseas. Have you looked at the youth website available on here?

My own children were in their mid 20s when I told them in 2006 (both tested positive) - this was the most difficult thing I have ever had to do in my life - I thought it would blow our relationship apart because I felt so guilty - but they have been wonderful, caring and supportive - I feel very fortunate.

It sounds like you didn't get much counselling support when you were tested. Are you able to go back to the clinic in Brisbane now you have more qestions that need answering. I think Michelle lives in northern NSW, so maybe she can help you with contacts for support and/or counselling.

Take care - and continue to enjoy your family. We look forward to hearing from you again. Let us know if there are any questions you think we might be able to help with. Or if you just feel like unburdening yourself - remember we're here.

Remember, Skye, one day at a time, and baby steps in trying to take onboard all the ramifications of HD in your family.

Keep on smiling! And happy tears are fine.

sonnie

Hello Skye and welcome to the forum,

I haven't been around as I keep forgetting my password, I hope I have cleared that up at last, (and I don't even have HD as an excuse!!).

I come from the other side, my husband is the HD person and I married him knowing he was at risk but not knowing really what it was as there wasn't much information about. I only knew what he told me and I don't remember how much he told me, enough to be scared thats all.

You definitely are not alone, I wonder why you feel guilt. Did you tell your husband before marrying him that HD was in the family? If so then he married you knowing the risks. If not then you both have a lot to learn about the disease, the course it takes and maybe get some help so you can both learn at the same time so you don't have so much confusion going through your mind.

There is tons on the internet and forums and of course much contradicts itself. Thats because everyone is different in the course of the disease.

I too think the age of your children is too young to tell them however I know someone on this forum who has told their children while young and they are very aware, very mature and understanding about what the disease is and how it affects other people. Maybe its a matter of how mature your children are as to how much you tell them, some children can learn about it according to their age or maybe they are not ready to be told while you are still mixed up about your own life.

The best advice will come from people here who come from HD families like you have, who have dealt with being at risk and testing as they can certainly identify with your situation and maybe offer valuable information for you to think over.

Wishing you all the best and again, welcome to the family we have here. Use us for any questions or worries you have rather than keeping them bottled up, we all have opinions and if you read what we all say and use what suits you it will make you feel heaps better.

Love

Buddybird (my real name is Debbie but it's boring putting that on here)

Thank you all once again.

Michelle, I loved Tony's article. very relevent.

Buddybird(I do like the name) I have always been very honest with my husband and he is an extreamly supportive and caring person. The thing thats scary about HD to me is that it is such a drawn out lengthy disease and it sounds like you go through so many physical and mental changes. It makes me wonder, when is it not going to be me anymore. In some ways I think I would cope better if I new that it was a much quicker ending - so thats were my guilt come from-what i'm going to put others through. My husband is constantly tell me that i will never be a burden. I just cant seem to shake the feeling.

Any words of wisdom about telling others. I'm not really sure if i should let friends and workmates know about HD. Is it a positive thing to share or is there negative backlash?

Your support means so much to me. Being able to let things out has helped me so much. The feeling of being alone is not so overwhelming anymore. Definatley strees levels have droped.

take care
skye

Hello Skye,

I'm glad you found the forum, and that you've posted and got some responses which have helped.

Our children are teenagers now, and came with me to my results appointment, so they could ask any questions. They've also spoken to my neurologist, and he's told them to contact him at any time if they want to discuss anything.

So far I'm not symptomatic, so it's not an immediate thing with us. I can understand, though, that it's at the back of your mind every day, wondering when things will happen. I guess that if you are symptomatic, it would be good to explain to your two a bit about HD. Being honest about it, at a level they can comprehend, seems to me the best approach. Of course each family has their own decision to make and what's right for us might not be right for you.

I hope you can find some support locally, but if not, there are lovely supportive people here

Best wishes,
Sal

Hi again Skye,

First of all I adopted a white budgie (already owning a budgie & cockatiel) who had the name Buddy so I seemed to adopt the name on many forums. Sadly our dog played with it & Buddy died of shock.

Now to the HD serious part. You are worried about being a burden to your husband, I think that is perfectly natural.

My husband tried suicide twice & the last time he said it was because he thought I was better off without him. I was furious the 2nd time as we had already lost our 7yr old & our youngest was diagnosed also with JHD, I told him that I will decide when I am better off without him - not him. I said if I feel better off without him then I'll poison his mashed potatoes or run him over myself, but I make that decision. I was furious at the beginning because I had supported him, married him, went through the trauma of losing Kieran to JHD, tried to encourage him to keep in touch with his family in NZ (2 sisters), went to work meetings at a place for disabled people and he was just going to leave me to deal with everything. He was rather shocked and I told him if he did it again I wouldn't take him back. He didn't try again.

Now he lives in a facility as I couldn't handle Bailey as JHD took over him, plus my husband. It is believed he became symptomatic around 37 and he went to the facility in his late 40's so the HD was very slow moving in him. He is still mobile at 50 but rather confused, I don't consider him a burden. I took him knowing the risk but not knowing the disease but we've been married 20yrs and no way would I leave him, he's a different person of course but I still remember the person he was and just want him to be happy. There is no timeset for when symptoms strike and now it is being looked at that it is possible it could be even 10yrs before symptoms make it obvious. I am currently looking into this as when I look back even as far as 1987 when we met, he did some strange things and I wonder if it was all HD related. I think research is still being done on this but it really makes me wonder when I look back.

We didn't tell anyone about the HD. Obviously his friends in NZ knew as they went to school with him and knew his Dad but over here we kept it quiet as we didn't know which way it would go. The only time we told people was when Kieran was diagnosed which meant obviously that my husband had it, we weren't treated differently and people stepped in to help when Kieran became sick.

I personally don't see any reason to tell friends and definitely not co-workers unless you have very close friends who will keep quiet. Only very few knew, they never told anyone as we did enough symptom watching ourselves without having everyone else doing it too. Do what you feel comfortable doing, are you seeing a Neuro who can advise you on how you are? They will notice when you become symptomatic or even your husband might notice before you do. It won't be sudden, it will creep up and give you time to make choices which is one good thing about it. You don't have to make snap decisions overnight, you have years ahead of you to slowly make decisions on telling people.

Don't feel guilt, your husband loves you and is very supportive so you won't be a burden to him as he married you and talks about HD with you. He doesn't sound like someone who won't cope when things get tough, it really would be good if you could meet other couples and have your mind put at ease.

I hope others can help, hopefully you won't become symptomatic until much later in life. I know thats not helpful to say but my husband was the biggest bragger when it came to how slow moving the disease was for so long, now he brags that he has outlived his father. Mind you he did avoid my mashed potato for years .

Wishing you all the best


Buddybird xx

Hi Skye - I agree with Buddybird - I don't think you should rush into telling people you have HD. Especially people at work - they'll be on the lookout for symptoms, and I know this would make me very anxious (I'd already retired when I found out about HD in my family in 2006 - but the people I worked with would have had a field day, I'm sure, if they'd known - but perhaps your work colleagues are more kind and compassionate than mine). You also have to be careful that you are not discriminated against in the workplace because of your HD status - so I would say nothing.

In retrospect I wouldn't have told any friends - but the way it played out I'd already told 3 close friends that my aunt was HD positive, and then (not knowing much about HD at that stage and all its implications) told them I was being tested - so basically I had to 'fess up when I got my results, otherwise if I'd said nothing they would have guessed the worst anyway. I have to say they haven't been very supportive - most people have never heard of HD, plus everybody has their own troubles to contend with.

The other thing is - if you tell friends/people then, in my case because my children were in their 20s, you're basically divulging to others who know your children that they are at risk - and I believe it should be up to them if they want to tell people. So I consider it a breach of privacy of other family members (but your children are younger - but eventually they'll be grown up). Also I don't know if you have any siblings or extended family who may be at risk and would prefer to keep it confidential.

If it were a more common disease (like diabetes or asthma etc - things that can be managed by medication/diet/lifestyle changes etc) - then people would be able to talk with you about it and would probably understand what you're going through - but with HD I think most people would steer away from it, especially because of the current poor outlook and prognosis - I mean, what words of comfort would they be able to give you knowing nothing about the course this wretched disease can take and the havoc it may cause. I don't think people want to confront that kind of stuff, and don't know how to deal with it.

Hopefully other forum members may be able to give you more positive words of wisdom to balance out all my doom and gloom - sorry, I've always been a pessimist.

Anyway - take time to mull over what you decide to do before you act.

All the best,
sonnie

Hey Skye

Glad your feeling a little less alone with all this...as your probably getting a sense throughout all the posts everyone does things differently and in their own way. Its kinda finding and doing what works for you.

Personally I feel being as open as you can about HD is the best way. Maybe not with work mates, although i shared an amount with my friends at work, as we had a really close relationship and there were times i had to go take care of mum whilst at work...so inevitably i had to share some of what was going on. Having said that though I worked for a small NGO..a Family Support Service...where everyone is trained to be compassionate and understanding! But I know alot of work places are not like that. I know there are times where some people have to tell their work due to safety reasons, if someone is symptmatic and working on tall buildings...well of course they need to let their work know. But if your not symptomatic, and working on the ground then its totally up to you.

I eventually told my friends about HD, which was received with support, they dont always know the right things to say...but its important to me that I share HD with with them...they have helped me with fundraisers...supported me during testing...visited my mum in the nursing home. I have a handful of very special friends who i share that stuff with. SO i guess choose your friends who have been there for you in the past and who you are close to. And make some friends who are living with HD as they are the best ones to share with!

With my kids Ive always been as open as i can about HD (being age appropriate). They have watched my mum get very sick, so I feel they deserve to know whats happening. HD is a regular topic of conversation in our house, just because it is so present, and mum is a big part of our every week. When I was at risk they worried alot and asked alot of questions ... and they still worry and ask alot of questions about my mum...about my aunts and uncles who are symptomatic, about my brothers who they know will get HD ...but I answer there questions as honestly as I can. Having grown up with HD without alot of support I feel its really important that we give our kids support and info as they need. Which is why we developed the site http://www.ourhdspace.org for young people living in families with HD.

There are proactive things you can do being gene positive...I have a good friend who visits his neurologist every year to ensure he has no symptoms...one of my brothers is really into excercise...other people take suppliments... so i guess its finding what helps you to feel hope for your future and gives you a sense of being proactive in the face of HD.  One good site which has really good info is http://www.hdac.org

..there are lots of websites out there...take what works for you and leave the rest... I think sometimes the biggest and most helpful thing is just knowing your not alone.



Michelle x

Hi Skye,

Welcome to the forum. Please don't ever apologise for 'dumping' it's not dumping, it's sharing!! I always find talking about things helps to lift the burden even if only a little.

Knowing who to share information with can be hard, it really depends on the people that your sharing it with. It's a hard decision and can be just awful when people react badly, but it can also be wonderful if they are understanding and supportive.

OK, that wasn't much help at all........

Once again, a big welcome to the site, I hope it helps to have others to talk to, I know it made all the difference to me.

Big hugs
Carls

Hi Skye,

As many other people have said, welcome to the forum.

It good to share these feelings that you are having, and here is a good place because many of us have been in very similar situations.

I agree with everyone, that knowing who to share this information with can be hard, and no one can tell you what to do. I'm lucky to have had a really good experience with telling some coworkers, but I do work for a small company that's a family business (but not my family) so perhaps they are more understanding.

Friends and family mean well, and mostly they are very good, but sometimes it can be frustrating if they are trying to tell you something other than what you want to hear.

I hope you feel welcome here.

Cheers,

Tania

Hello Skye

A quick hello from me too

Glad you found the forum

As you have already seen, there are people here with all sorts of knowledge, all sorts of experiences, and only too happy to share with you in your journey.  I am only relatively new to the forum but already I have seen such helpful and compassoinate stuff posted - it is just great

So please keep in touch through this means, as people here really do want to get alongside you, support you, and provide whatever help possible, without being judgmental, critical or whatever.  They are people who have travelled difficult paths, and can relate to your situation

As Michelle said, you are definitely not alone

Mark