Hello
I dont use forums like this as Im unsure who will respond and what they will say- but things are bad so I need to say something = so at least Ive said it.. My boyfriend of 10 years has been diagnosed only yesterday with Huntingtons disease. For the past 3 years, his behaviour such as balance, twitching, lack of descision, mental health issues ie anxiety, OCD - this man who was my rock just disintegrating in front of me. Eventually we got a diagnosis of Parkinsons- 6 months ago - so we tried to come to terms with this - but that was a mis diagnosis and he has been diagnoised with this horrible thing that will rob him of everything (ive read all this info) , me and his mum and dad of the person we know. I am so frightened, for him, for me - and how we will cope - I have no family and we have no children we are in our early 40s - and feels as if we are lost. I lost him along time ago but i hoped that with medication hed come back a little - and I worry how, someone like me - who is not carer and never had the skills to be one- will help him/support him. I am so frightened, so sad, so angry, so worried.............

Dece,
First of all I'd like to say I am sooo sorry for what you are going thru. I know how you feel. My husband of 23 years was diagnosed in Aug. of 2013. He is a 3rd generation HD. He has been showing signs for several years but really got bad in April of last year....by July I was ready to file for a divorce cause he was so out of control. I told him if he didn't get some help I was leaving. He knew he was at risk and didn't want me to go so he agreed to be tested. I have a post on here called "my story" . I have went into detail of alot of situations we have been in. It is a horrible place to be. What was your boyfriends CAG count? did the dr say what stage he was in? I know what you mean when you say that he is your rock and it is so sad to see them daily going downhill. I think I have felt every emotion in the world.
This is a great site for help
Liz

I'll also express how sorry I am that you have been introduced to this disease.
You should find compasionate and caring responses to your posts here.
If you are concerned about posting in a public forum, there is an yahoo group you could join
hdcaregivers-subscribe@yahoogroups.com

Thank you very much right now - I feel as if we both have been gave a death sentence (in different ways - and I understand this is not all about me) . Having my own mental health issues for many years - it is impacted by this diagnosis - and how I can support J I dont even know how I am able to cope with myself. I will look on this site when im stronger - as to be honest the full scale of this disease and what Ive read - even on this site - I cant cope with it

I cannot begin to fathom how over whelmed you must feel. As when I first heard of HD, it was a trip to the libary and just a few technical articles that did not adeqauely discribe what was about to occur.

Hello - J is waiting to see the consultant/nurse. The misdiagnosis was beacuse the consultant had no reason to even suspect that anyone in the family had the disease - ie Js parents, brother, aunt, uncle, cousins, second cousins, grandparents (both sets), niece, nephews - not one sign of this! and even in the diagnosis of parkinsons there was no family history of this.

So Ok - I think J is in the early signs - and has been more noticeably in the last year (ie tripping/forgeting things, struggling through simple instructions, anxiety).

WHAT is a bad CAG count? if J has a bad CAG count and he has early signs will he decline quickly? Can you tell a CAG count without being tesetd at this point? ie by assessing the symptons visually?

No, the CAG canT be determined by the symptoms. The higher the CAG usually means earlier onset of symptoms, but not always.. My husband has CAG 42 and has severe chorea. He's 58 yo. Some people with higher cags dont even get chorea at all.

Thanks V, I appreciate your response J has the consultant next week so
were hoping he will get some answers ...

Dece, hang in there. You have every right to be disillusioned, angry, and frightened. I promise you that your will power and fortitude will come through. We all have something within us that we don't realize that we have, and that is the ability to enjoy the passing of time, one day at a time.

You are talking about all of us when you say you have had mental health issues of your own. I believe that the more you talk to people... ANYONE and not just those who have ties to H.D.... you find that everyone has challenges to their own mental health. Heck, I had all of that stuff before I even met my wife.

I have the same fears as my wife is entering what appears to be stage 4 of the disease and I am starting to feed her. I am more worried about our son being at risk. As we all know, it's a family disease. Some days are really tough, but I think we can all handle it. Think about today and not so much a year or a decade from now. Live for today.

Best wishes to you. Come on back here when it's convenient for you. You will find friends here.

Thank you that is so kind of you and Im trying I really am - trying not too be so morbid for Js sake -hes a half full person - and am half empty person - so not best placed ever to deal with problems. J has been working but his work again have refered him to their doctors again - they are aware he has Parkinsons but the new diagnosis they are not aware off - we are nto being devious J just does not know all that he needs to know. His work unfortuately have not been all supportive esp the supervsior and senior manager - I dont blame then as his mobilty is poor but the employers he works for (government) their policy is to make accomodations re disabililty. Their understanding of illness is flawed - a different supervisor/manager - I know would haev had a diff perspective. This is ongoing and Js confidence is very low.

Deep within my heart - I dont think he can work full time and he will find something else and Im hopeful for him = but he is most upset - advising that 'even thou this is just a shitty job (menial and low paid!) they dont want him because of his illness' - and I hate to see him in tears....My Jxxx



Edited 1 time(s). Last edit at 07/01/2014 07:03AM by Dece.