Can anybody tell me what the very early stages are with HD? What sort of things would a spouse see / feel / notice very early on? Thank you!

I think the earliest symptoms are cognitive, thinking becomes slower, impulsive behavior, personality changes, outbursts of irrational anger and so forth. My guys both had these as their earliest symptoms.
My youngest also had facial grimacing and vocal tics, sniffling constantly...that part is passed now. My older son has a clearing of the throat or a gravelly voice.

Take care,

Carla

I'm early stage HD GAG 42 and a little older (53) than Carla's kids but would agree with Carla for the most part. I am having cognitive problems.Have to re-do alot of things I do here at work e-mails and such. Memory has really gotten bad and. When I was first tested positive I had to go on med's for depresion. Still taking them. Also have some movments mostley in my legs which seems worse at night.
Keeps the Dog off the bed . Hopefully you can find a good nueloist to help you.

Thanks Marky S and Carla. Just need all the guidance I can get. My wife has given up on the psychiatrist. Saw a neurologist six months ago but nothing diagnosed. Cognitive and psychiatric symptoms have been around a few years and movement stuff started about 6 months ago. Still very much in limbo. Only vague reference of Huntington's Disease from the psychiatrist. Not sure how seriously I should take it. I am not aware of it being in her family.

Nalo I think you should move on to a Neuro specialist in HD/movement disorders to know. Finding the right Doctor can be a chore, check out the years I searched for an answer under "community". Not sure why you think about HD since it isn't known in the family. It wasn't in mine either but I became the first. Always wanted to be first but I would have preferred the lottery. Unfortunately it was something of a breath of fresh air having a diagnosis. You get really tired and irritated when you don't know. Keep in mind there can be many things going on. I am a believer ( from experience) that there can be more than one health issue. If you want a recommendation send me a PM.

Best of Luck,
Mike

Out of curiousity, what do you all think of the theory that neurologists do not mention HD because of the "no cure" and psychological impact with a diagnosis? I went to a neuropsyc and she said that she thinks that is why neurologists don't mention or seriously consider HD.

That's a very interesting theory and we all know about the far-reaching implications of a diagnosis of HD. However, what about the OTHER people - the spouses, partners, children, other family members, etc. - people whose lives are also shattered. What about marriages that are breaking down,etc. I for one, would accept a diagnosis because that's all I have left. I could then consider the aftermath, counselling, medication, etc.
To be honest, the fear of giving a diagnosis is taking the easy way out. How are people supposed to be working towards a cure, if that's the case?
I thing it's appalling. End of!

Nalo,
Where are you located? There are folks on here that can point you towards a neuro in your area (hopefully) that has experience with HD or as Mikee said a movement disorder specialist. I looks like you need some answers and your docs aren't providing or they are shying away for some reason like lack of experience with her particular condition. Maybe what your doc observed was outside their scope of expertise and to avoid looking foolish they sent you on your way. IMHO

Pete

I am in Ireland. Probably not helpful as I know that most of you in this forum are in USA.

I think the advantage before an official diagnosis is that you can get your ducks in a row. Consider Long Term Care insurance and other options. I sure wish we had that. Even with Medicaid my husbands nursing home costs me $2600.00 a month. With 2 young kids at home this is a huge burden.
Once the diagnosis is official, all your insurance options are off the table.

I know I am not of much help because I am in Canada. But have you tried contacting the Huntington's Disease Association of Ireland. They do have a website with contact information. I hope they can point you in the direction of getting some help.

The cognitive psychiatric symptoms of the disease are certainly difficult to deal with. There are many of us who have been here who have experienced marriage breakdown because of this disease. It is a difficult situation when a spouse with HD want out of the marriage. I have travelled that road. My thoughts are with you.

My father's symptoms are insomnia, loss of appetite, social withdrawal, anxiety, irritability and mood swings.

Hi there i just came across this post and registered to reply as I live in Ireland
My husband is at risk too, we only found out ten years ago and up until now we largely ignored the whole issue. We have 3 children so my husband has decided to be tested so they will know if they are at risk or not, all the children were born before we were told about the risk

Anyway I would urge you to contact the Huntingtons disease society in Ireland they can give you details of a gp in your vicinity who has knowledge of HD. Some of my husbands family members attend a neurologist in Galway who has an interest in HD and wants to learn. I could get his name if you fail to find it but it would take a number of weeks.

Re your wife's family, I would hazard a guess that they are in denial, it's probably easier for them to believe you are at fault rather than accept they maybe at risk too. My husbands family has a lot of dysfunctional behaviour whether this is down to the disease or not I don't know. Initially it was though that my HD parent in law was free as they had been given the all clear before genetic testing. Around thirteen years ago one of my husbands siblings announced they had been diagnosed, knowing what I now know any one who had any knowledge of the illness had to be able to see she had the disease including my parents in law but they all went into denial and said she had made it up. eventually we accepted that the story was to truewe didn't see the sibling as she lived in another country. Roll on three years and my parent in law has a fall and we were finally told that medical confirmation had came years earlier and sibling was telling the truth but this had been kept from a few family member, meanwhile the others were almost finished the testing process.
We were quiet young and we're influenced into believing it was lies. The sibling arranged to send medical confirmation that she had the illness. On numerous occasions we asked if anything had ever came and we're assured it hadn't.

Sorry pressed send on my post before I finished

Obviously my husband and I were left reeling, after writing this post I am amazed that after this huge secret been kept from us that we continued to be able to have a relationship with his family but we did. I still can't understand how they could justify doing this to him and his other siblings and especially to allow us to believe the sibling with Hd was lying and behaving out of spite. The reason I am telling you this story is to try and give you some inside into how much denial and secrecy there is around HD here in Ireland.

I wish you all the best and hope your situation has improved.

Thank you, Daisy! I appreciate the time you took to sit down and write a reply like that. Things are getting worse here. She is not engaging with medics any more and her family are down on top of me like a tonne of bricks. She is applying for Protection Orders, Safety Orders, etc and now not sleeping at home by night as she lives in fear of me - lol! There are court appearances coming up - all very nasty. She is the VICTIM all the time and I am the perpetrator. The kids have turned completely against her and actually don't want her in the house. That's my fault, too, by the way - lol! They say that she has changed,
she's not the same, she's 'possessed' - not nice, I know, but she scares them. She can be very aggressive with them for NO reason when I am not in the house. I really don't hold out much hope for the immediate future. The kids are unbelievably upset at the thought of daddy leaving the family home - given the circumstances. Her paranoia is getting worse by the day. I emailed her neurologist recently about the movement issues and he sent out a letter for an appointment. However, she didn't attend. She's more than happy to pursue the legal route to get me out as this is her way of gagging and silencing me. All her symptoms will then disappear - lol! I am utterly desperate for advice. Thanks for the support!

Thank you, Concerned Partner. Yes, it is indeed difficult. My wife doesn't have a diagnosis. She is exhibiting all the usual symptoms - however the Psychiatrist and Neurologist visits have all stopped. She is in denial that there is anything wrong and
it's all my fault. Meanwhile, three young children and a husband are devastated. It really is so tragic.

my Wife went through a stage similair, where I was trying to kill her and every body was in cohoots with me to get her put away.
Her family history was well established and She was aware of the HD progression. So I was asure it was HD when the symptoms occurred. Her rage was so severe I was planning to have her committed.

After several hysterical visits to several Drs and being unsuccessful with multiple medications, a low dose of an SSRI and a benzodiazepine returned her to being a "normal" person again and has been so for several years.

"Denial" or more accuratly "self unawareness" is a sypmtom not mentioned alot
[hddrugworks.org]

while my wife is now in the latter stages with constant chorea, requiring help to walk, eat, dress, etc, she doesnot have HD and anyone who thinks she does is crazy

Thanks for that article JFB - A really interesting piece that I can certainly identify with.

Nalo, have you contacted the Huntingtons disease association in Ireland, they would probably be able to give you better advice. My heart goes out to you and the children, please do not even consider moving out of your home and leaving them in your wife's care, she is not in the right state of mind to care for them.

Mental health services are so poor here in Ireland its really frightening. Would you consider ringing one of the help lines and asking for help?

Thanks Daisy.
The problem is that when one person wants out of a marriage, there's not much the other person can do...even less so when you have no diagnosis. She can refuse any contact with medical professionals. The GP isn't the most proactive and he tends to believe her wild stories - after all she's a nurse! Her paranoia is so bad that she gets to tell her stories to virtually everybody before I do. I am public enemy number 1 with her friends and family and nobody is willing to engage on any level with me - why would they? After all I've done to her!!! Yes, I have spoken to people in The Huntington's Disease Association of Ireland. They are really fantastic. I have been to one of their meetings and plan on going again. They believe there is a place for me at their meetings and welcome me with open arms.
Her movement issues are progressing very slowly. People are probably putting it down to stress, etc. It also tends to be mostly at night. The children no longer recognise their mother and tell me about awful dysfunction when I am not here. All based on paranoia and accusations about me and what I am doing. Her friends and family hear the same every day. It just never stops.
I would love to know if there is anybody out there with similar stories.

Thank you all for being so kind, helpful and understanding.