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Old 24-01-16, 11:43 AM   #1
Red Robin
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Default An introduction

Hi, let me introduce myself/family situation – we live in country Australia and because of the isolation I tend to resort to the internet. My husband has a family history of HD, though he seemed unaware of the actual disease until a sibling was diagnosed approximately 15 years ago (whom passed away about 18 months ago) he was always told his father had MS. When he describes his father it was that he was often mistaken as drunk (he died of a stroke). There was also an aunt and his grandfather who had HD, and research has shown his great grandmother died in a mental institution. My husband attended genetic counselling 10 years ago but decided he did not want the test and the genetic doctor told him he would be positive due to family history and more importantly one of his children from a previous marriage has been tested and is positive, (I believe the doctor has said she also noted symptoms at the time). His sibling had late onset and he seems to be the same, which is for the physical symptoms; but behaviour, selfish attitude, angry outbursts have been going on for longer than I can remember. I find it hard to remember a person that I would have wanted to marry! This is the first time with a forum, I have registered, written drafts, do I or don’t I post– have I become obsessed in trying to understand who my husband is, is there a point to it. Hubby does not want to know if he has HD, if he is symptomatic. He has told doctors the repercussions of knowing is worse than the disease, he would then be labelled. When speaking to my doctor he says my husband fits the stubbornness/difficult type of person that can happen in older men, he may have HD or could be a “grumpy old man”. Oh, a doctor who is an acquaintance commented to me a couple of weeks ago after seeing my husband out at a function, that he thought my husband was showing signs of cerebral deficiency – this doctor in the past has said he has never known anyone so angry as my husband. My husband still gets upset about this comment when he brings this up as he always says he is not an angry person (I wish). But I am struggling with the irrational behaviour etc - then I see a person who can seem normal and I get so confused – does using a forum help? So here goes I am putting my story out there.
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Old 24-01-16, 10:34 PM   #2
Trish
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Default Re: An introduction

Quote:
Originally Posted by Red Robin View Post
Hi, let me introduce myself/family situation – we live in country Australia and because of the isolation I tend to resort to the internet. My husband has a family history of HD, though he seemed unaware of the actual disease until a sibling was diagnosed approximately 15 years ago (whom passed away about 18 months ago) he was always told his father had MS. When he describes his father it was that he was often mistaken as drunk (he died of a stroke). There was also an aunt and his grandfather who had HD, and research has shown his great grandmother died in a mental institution. My husband attended genetic counselling 10 years ago but decided he did not want the test and the genetic doctor told him he would be positive due to family history and more importantly one of his children from a previous marriage has been tested and is positive, (I believe the doctor has said she also noted symptoms at the time). His sibling had late onset and he seems to be the same, which is for the physical symptoms; but behaviour, selfish attitude, angry outbursts have been going on for longer than I can remember. I find it hard to remember a person that I would have wanted to marry! This is the first time with a forum, I have registered, written drafts, do I or don’t I post– have I become obsessed in trying to understand who my husband is, is there a point to it. Hubby does not want to know if he has HD, if he is symptomatic. He has told doctors the repercussions of knowing is worse than the disease, he would then be labelled. When speaking to my doctor he says my husband fits the stubbornness/difficult type of person that can happen in older men, he may have HD or could be a “grumpy old man”. Oh, a doctor who is an acquaintance commented to me a couple of weeks ago after seeing my husband out at a function, that he thought my husband was showing signs of cerebral deficiency – this doctor in the past has said he has never known anyone so angry as my husband. My husband still gets upset about this comment when he brings this up as he always says he is not an angry person (I wish). But I am struggling with the irrational behaviour etc - then I see a person who can seem normal and I get so confused – does using a forum help? So here goes I am putting my story out there.
Hi Red

Thank you for sharing your story.

My Hubby had HD and sadly died five years ago (age 49) but using a Forum like this certainly helped me offload and I was able to ask questions when needed of others' experiences.

This Message Board is geared to the UK in the main but HD is the same the world over so I hope you feel ok to share your experiences and take comfort from us sharing our own.
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Old 25-01-16, 12:25 AM   #3
shiraz
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Default Re: An introduction

Hi There.....I have been waiting to see a Red Robin all winter....well as you are in Oz it is summer there? But....a Robin has turned up!!
So much of your post rings true from the diagnosis of a father being "drunk", angry outbursts (irrational) for longer than you can remember, to the person so far removed from the one you would have even wanted to marry....angry and hostile and you are left thinking is it me, why can't they see...My husband has finally been diagnosed with hd and yep he is older (72 now) but I was thinking dementia, Parkinsons....I just knew something was very wrong for many years. The problem seems to be that doctors see you for what 10 minutes...they don't listen to you, but the person with you who is saying 'I'm fine' and denying anything you might be bold enough to mention for fear of a backlash back home. As for cerebral deficiency I was told "brain starved of oxygen"....hence the movements being ataxia and on and on....but does it help being on this forum/messy board - heck yes for me....without it I would have bailed out. You are not alone....don't matter how many miles away you are, but...sometimes it does just help to share. Please keep in touch...if you feel you want x
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Old 25-01-16, 12:57 PM   #4
Allan
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Default Re: An introduction

.
Hi there – and Welcome

Phew! There certainly seems to be well recorded HD-type family history. I’m surprised that the genetic doctor told him he would be positive due to family history – because that on its own is incorrect. B4 testing he would be 50/50. However, the clinching fact [almost] is that one of his children has tested positive. Until both the child’s parents have had the genetic test it is not 100% scientifically certain that his father is the one to pass on the mutant gene – but in all likelihood it is.

The behaviour, selfish attitudes, angry outbursts and denial that you mention are typical examples found in HD - and also in several areas of mental health issues.

Yes, you will have become obsessed in trying to understand who your husband is. All spouses reading your message will sympathise and understand where you are coming from. This message board is a lifeline for many people who themselves are becoming isolated in their lives due to the consuming nature of this disease - which is only truly known and understood from the inside by family members who are, in the main, the Carer, Coper, Counsellor and Crusader in all things HD-based.

A good tactic for getting a grip and a better understanding of your husband’s condition is to let it all out here – in the privacy of this forum with friends who can comfort and care for you too.

Best wishes


.
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Old 25-01-16, 01:50 PM   #5
lunel78
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Location: Sydney Australia
Posts: 26
Default Re: An introduction

Hi Red Robin - I'm also from Australia - I joined this forum last year when the Australia HD Forum closed.
I think the forums are great - you can ask questions, read about other people's experiences with HD in their family AND you feel supported because the people on the forum know exactly what you are going through - whereas most people who know nothing about HD cannot understand or relate to your situation.
Yes - that's right - sounds almost certain if your husband's son has been tested/diagnosed that the father would have it - but as Allan says it's not definite unless tested. Case in point - both my maternal grandparents must have had the mutated gene as their 2 surviving (now one) children were tested in 2006 and both had 2 HD genes of 36+ and 40+ (which meant their children would have inherited a HD gene as their parent didn't have an unaffected gene to pass on). My own 2 children were tested, also in 2006, after I tested positive - and I thought my son had inherited my HD gene - but it was from his father - and my daughter got both mine and her father's.
So - you just never know.
One of the advantages of the forum is that you can remain anonymous if you wish - so privacy is maintained. Another is - you can log on any time to suit yourself - doesn't matter where you are in the world or what time it is.
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Old 26-01-16, 12:01 AM   #6
Red Robin
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Default Re: An introduction

Quote:
Originally Posted by Trish View Post
Hi Red

Thank you for sharing your story.

My Hubby had HD and sadly died five years ago (age 49) but using a Forum like this certainly helped me offload and I was able to ask questions when needed of others' experiences.

This Message Board is geared to the UK in the main but HD is the same the world over so I hope you feel ok to share your experiences and take comfort from us sharing our own.
Thank you Trish, I think I am doing the right thing by joining the group as I find although my friends can be of limited support as they just do not understand, they cant understand why I stay with my husband as he is just not a nice person, they think I am just making excuses for him. Though I must admit some of what I read on the forum scares me.
When looking up the net I did look for an Australian forum, but it had little activity and I think the UK just has the bigger population and I am reaching more people and their experiences. I have wondered where this disease originated in the family and it was only last week I found that my husbands great grandmother died in a mental institution in the early 1900s. From their I am thinking her mother, she died in Shardlow Derbyshire and from what I can find out there was a workhouse there, so I wonder as her husband's last know address was Stanton by Dale. I don't know why I needed to know this but I felt I did need to know where the HD came from. So I guess there is the UK connection too.
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Old 26-01-16, 12:26 AM   #7
Red Robin
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Default Re: An introduction

Quote:
Originally Posted by shiraz View Post
Hi There.....I have been waiting to see a Red Robin all winter....well as you are in Oz it is summer there? But....a Robin has turned up!!
So much of your post rings true from the diagnosis of a father being "drunk", angry outbursts (irrational) for longer than you can remember, to the person so far removed from the one you would have even wanted to marry....angry and hostile and you are left thinking is it me, why can't they see...My husband has finally been diagnosed with hd and yep he is older (72 now) but I was thinking dementia, Parkinsons....I just knew something was very wrong for many years. The problem seems to be that doctors see you for what 10 minutes...they don't listen to you, but the person with you who is saying 'I'm fine' and denying anything you might be bold enough to mention for fear of a backlash back home. As for cerebral deficiency I was told "brain starved of oxygen"....hence the movements being ataxia and on and on....but does it help being on this forum/messy board - heck yes for me....without it I would have bailed out. You are not alone....don't matter how many miles away you are, but...sometimes it does just help to share. Please keep in touch...if you feel you want x
"Red Robin" you made me smile as I don't know why I picked that as a user name, maybe my old girl guide days in the Red Robin pack or was I a Blue Wren, now I am unsure.
Then I cried - what you wrote is me, (my husband turns 72 today) - I am forever saying 10 minutes in the doctors room and he is perfect he knows the questions that are going to be asked. The doctors have said lack of oxygen from peripheral vascular disease, the reason for the signs of dementia and the need of a walking stick. But at home there is more happening and they don't see that. I totally understand having to be careful of what to say, for years I could not even mention HD, lately I can but my husband just does not want to know in his eyes he is fine, everyone else has a problem. He is aware he has problems walking, he knows he has problems with finding words at times along with other things, but it is "old age". I read on the forum where people are aware of their illness, know their problems and the impact, but this not knowing a definite and him in total denial - I just want a doctor to say, I think it is time that we find out for sure what is happening but it just does not happen especially when they have it on file his refusal to know anything. So I feel lost.
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Old 26-01-16, 12:44 AM   #8
Red Robin
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Join Date: Dec 2015
Posts: 34
Default Re: An introduction

Quote:
Originally Posted by Allan View Post
.
Hi there – and Welcome

Phew! There certainly seems to be well recorded HD-type family history. I’m surprised that the genetic doctor told him he would be positive due to family history – because that on its own is incorrect. B4 testing he would be 50/50. However, the clinching fact [almost] is that one of his children has tested positive. Until both the child’s parents have had the genetic test it is not 100% scientifically certain that his father is the one to pass on the mutant gene – but in all likelihood it is.

The behaviour, selfish attitudes, angry outbursts and denial that you mention are typical examples found in HD - and also in several areas of mental health issues.

Yes, you will have become obsessed in trying to understand who your husband is. All spouses reading your message will sympathise and understand where you are coming from. This message board is a lifeline for many people who themselves are becoming isolated in their lives due to the consuming nature of this disease - which is only truly known and understood from the inside by family members who are, in the main, the Carer, Coper, Counsellor and Crusader in all things HD-based.

A good tactic for getting a grip and a better understanding of your husband’s condition is to let it all out here – in the privacy of this forum with friends who can comfort and care for you too.

Best wishes


.
Thank you for your message, I understand the complexities of HD and other mental health similarities. Going back to the genetic counselling/doctor I think they felt the family history was strong and we were told it was almost certain he would be positive, it would just be where on the scale. I was also told they found him symptomatic whilst he was having the sessions with them. I think I find this the most difficult part of what is happening in my life as there is nothing set down in concrete but I know and other family members know there is something wrong, big time, with my husband, but in his eyes he is just getting old (72). When his sibling was diagnosed and subsequently has passed away in a nursing home, and then his child was tested, and because he did not want to know there has been a big family split. His attitude can be a struggle.
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Old 26-01-16, 12:58 AM   #9
Red Robin
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Join Date: Dec 2015
Posts: 34
Default Re: An introduction

Quote:
Originally Posted by lunel78 View Post
Hi Red Robin - I'm also from Australia - I joined this forum last year when the Australia HD Forum closed.
I think the forums are great - you can ask questions, read about other people's experiences with HD in their family AND you feel supported because the people on the forum know exactly what you are going through - whereas most people who know nothing about HD cannot understand or relate to your situation.
Yes - that's right - sounds almost certain if your husband's son has been tested/diagnosed that the father would have it - but as Allan says it's not definite unless tested. Case in point - both my maternal grandparents must have had the mutated gene as their 2 surviving (now one) children were tested in 2006 and both had 2 HD genes of 36+ and 40+ (which meant their children would have inherited a HD gene as their parent didn't have an unaffected gene to pass on). My own 2 children were tested, also in 2006, after I tested positive - and I thought my son had inherited my HD gene - but it was from his father - and my daughter got both mine and her father's.
So - you just never know.
One of the advantages of the forum is that you can remain anonymous if you wish - so privacy is maintained. Another is - you can log on any time to suit yourself - doesn't matter where you are in the world or what time it is.
Hi - this is something I wondered wether to do or not but I think I am on the right tack, to help keep my sanity. It would definitely be more helpful if my husband would have been tested, it would also have been beneficial if a doctor said "oh, we see you are declining in mobility etc I think it is time we investigated the family history of HD" but no, I think because of his age they think physical signs would have shown up sooner(though his sibling didn't show signs until 69, though I had noticed a deterioration of speech over the years but had thought nothing of it). My husband would at times "kick the dog" movement with his legs, these days he seems to stomp a lot, though he seems unaware, and he can at times fidget a lot, other times it is minimal. At times when he is talking to people his movements are quite odd, I often wonder what people think. Happy Australia Day.
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Old 26-01-16, 11:56 PM   #10
toosh
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Location: North East
Posts: 570
Default Re: An introduction

Quote:
Originally Posted by Red Robin View Post
Thank you Trish, I think I am doing the right thing by joining the group as I find although my friends can be of limited support as they just do not understand, they cant understand why I stay with my husband as he is just not a nice person, they think I am just making excuses for him. Though I must admit some of what I read on the forum scares me.
When looking up the net I did look for an Australian forum, but it had little activity and I think the UK just has the bigger population and I am reaching more people and their experiences. I have wondered where this disease originated in the family and it was only last week I found that my husbands great grandmother died in a mental institution in the early 1900s. From their I am thinking her mother, she died in Shardlow Derbyshire and from what I can find out there was a workhouse there, so I wonder as her husband's last know address was Stanton by Dale. I don't know why I needed to know this but I felt I did need to know where the HD came from. So I guess there is the UK connection too.
Hi Red Robin

Welcome.

I used to live very near Shardlow and Stanton by Dale know those areas very well!!
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