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Old 09-03-14, 09:00 AM   #11
Holly
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Join Date: Aug 2012
Location: London
Posts: 11
Default Re: Symptons

Quote:
Originally Posted by LECS View Post
Hi holly

I have HD and I know it, I feel quite mad but I try to ignore the feelings that push me to want to do things and try to act 'normal' but I truly can't and it makes for a very difficult time for my hubby who remains devoted, he says that he comes at it from every angle and things he tried before which have previously worked no longer do. He calls me 'grumpy' daily and asks how the other dwarfs are to make me smile which it usually does. I look very 'normal' but we no longer mix with anyone outside of our family because others can't see or understand it. I hate foods that I used to love, a regular coffee drinker for years I now believe it to be poisonous so no longer can drink it. Before I let my hubby touch my hand I ask myself if it's clean and I have to visualise my meal tasting good before I can want it and if anything goes wrong in the preparation of it, I can no longer eat it. I find it easier if I can make it myself or if I don't watch hubby make it. I'm afraid the list goes on, sorry, but hubby tries hard to cope, I try hard to manage the madness in my head and somehow we keep getting through each day. I find I now use all the wrong words so hubby tries not to react to what I've said straight away because its often not what I mean. I can do only one task at a time and communication now requires more concentration so I need time to absorb what he's saying and how I need to reply. We are fortunate that time is now ours and never plan anything before midday because having to be ready by a certain time always ends in disaster. I wish with all my heart that I didn't have HD and that all other sufferers didn't either and knowing first hand the pain and hurt that I cause my loving hubby, my heart goes out to you. I can only say in my defence is that I cant help it. Sending you lots of best wishes.
Hi LECS
Thank you so much for replying to my post. It's good to get the perspective from someone with HD. I must admit that your post brought a tear to my eye. I feel so guilty when I react to my husband's rants and strange obsessions. It's just so difficult when I come home from a stressful day at work and I have to ask what sink I can wash my hands in. Or he is hovering over me (literally) when I am making dinner in case I make a mess. Then he will start shouting at me (this could be because a potato peeling has dropped on the floor or a splash of water has gone on the work surface). After reading your post, I am going to try harder not to react to him and not take it so personally. Thank you once again for your post. You sound like you have a lovely husband and I wish you both well.
Holly
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Old 09-03-14, 06:18 PM   #12
laney
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Join Date: Mar 2014
Location: Lancashire
Posts: 2
Default Re: Symptons

Hi I am a support worker with HD patients in a residential home. We care for people in various stages of HD but I have come across something I haven't seen before. A patient. In her late 30s who has started holding her mouth open all the time causing a very dry mouth and throat. Our doctor doesn't know the cause as it doesn't seem to be a spasm, no ridgidity in her jaw and she can close it if she wants to. Anyone come across this before? Thanks x
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Old 10-03-14, 12:05 AM   #13
DH
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Join Date: Dec 2007
Posts: 2,184
Default Re: Symptons

Quote:
Originally Posted by LECS View Post
Hi holly

I have HD and I know it, I feel quite mad but I try to ignore the feelings that push me to want to do things and try to act 'normal' but I truly can't and it makes for a very difficult time for my hubby who remains devoted, he says that he comes at it from every angle and things he tried before which have previously worked no longer do. He calls me 'grumpy' daily and asks how the other dwarfs are to make me smile which it usually does. I look very 'normal' but we no longer mix with anyone outside of our family because others can't see or understand it. I hate foods that I used to love, a regular coffee drinker for years I now believe it to be poisonous so no longer can drink it. Before I let my hubby touch my hand I ask myself if it's clean and I have to visualise my meal tasting good before I can want it and if anything goes wrong in the preparation of it, I can no longer eat it. I find it easier if I can make it myself or if I don't watch hubby make it. I'm afraid the list goes on, sorry, but hubby tries hard to cope, I try hard to manage the madness in my head and somehow we keep getting through each day. I find I now use all the wrong words so hubby tries not to react to what I've said straight away because its often not what I mean. I can do only one task at a time and communication now requires more concentration so I need time to absorb what he's saying and how I need to reply. We are fortunate that time is now ours and never plan anything before midday because having to be ready by a certain time always ends in disaster. I wish with all my heart that I didn't have HD and that all other sufferers didn't either and knowing first hand the pain and hurt that I cause my loving hubby, my heart goes out to you. I can only say in my defence is that I cant help it. Sending you lots of best wishes.
Probably one of the bravest and most honest posts I've read on this forum, and I've read a few...

LECS, I've tested positive for the gene but I'm non-symptomatic. Were you aware of the changes in yourself before anyone else or did they have to be pointed out to you? It's one of my concerns that I'll be acting in ways I don't want to without realising it.
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Fetchez la vache.
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Old 10-03-14, 06:59 PM   #14
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: Symptons

Quote:
Originally Posted by Allan View Post
Hi LECS

I have just tried to send you a private message. Have you chosen not to receive them?

Cheers

Allan
Hi Allan sorry no idea. If you tell me where to look I will. Lecs
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Old 10-03-14, 09:01 PM   #15
Allan
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Location: Hastings, East Sussex, UK
Posts: 1,148
Default Re: Symptons

Quote:
Originally Posted by LECS View Post
Hi Allan sorry no idea. If you tell me where to look I will. Lecs
Hi Lecs

I've been trying to understand other things that can be done on this forum but it's not very user friendly. For "Private Messaging" do this:

Click "User Control Panel"
In "Your Control Panel"
Under "Settings & Options"
Click "Edit Options"
Scroll down to
"Messaging & Notification"
Under "Private Messaging"
Tick “Enable Private Messaging”

Done!

If you click the link below you can see the full monty for "private messages":

http://hdmessageboard.com/faq.php?s=...l&titlesonly=0

Thanks
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Old 10-03-14, 10:29 PM   #16
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: Symptons

Quote:
Originally Posted by Allan View Post
Hi Lecs

I've been trying to understand other things that can be done on this forum but it's not very user friendly. For "Private Messaging" do this:

Click "User Control Panel"
In "Your Control Panel"
Under "Settings & Options"
Click "Edit Options"
Scroll down to
"Messaging & Notification"
Under "Private Messaging"
Tick “Enable Private Messaging”

Done!

If you click the link below you can see the full monty for "private messages":

http://hdmessageboard.com/faq.php?s=...l&titlesonly=0

Thanks
All done Allan I think.
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Old 10-03-14, 10:36 PM   #17
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: Symptons

Holly it is very difficult to easily explain things in a few chosen words and I'm now feeling bad that you feel it's you that's needs to try harder, it's not, it's more complicated than that. If you would like to ask any questions please feel free to private message me and I will do my best to answer them if I can.
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Old 10-03-14, 11:06 PM   #18
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: Symptons

Quote:
Originally Posted by DH View Post
Probably one of the bravest and most honest posts I've read on this forum, and I've read a few...

LECS, I've tested positive for the gene but I'm non-symptomatic. Were you aware of the changes in yourself before anyone else or did they have to be pointed out to you? It's one of my concerns that I'll be acting in ways I don't want to without realising it.
That's a difficult question to answer for loads of reasons, if you are non-symptomatic I recommend you live your life to the full and try to push all things HD to the back of your mind. If and when the time comes, you might realise your actions you might not, my mother has HD and I like to think that she didn't realise her behaviours and actions because it wasn't nice being on the receiving end of it growing up, but I do know about me, I never understand the why of my behaviours or thoughts or decision making but I know I've done it once it has been pointed out although I can't always remember specifics like who said what. It's like knowing the aftermath but not knowing how I arrived there. You need to enjoy today and not worry too much about tomorrow. I did when I was non-symptomatic.
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