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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 05-10-15, 07:50 AM   #1
glasshalffull
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Default Don't know what I expected but it was not this.

I live with my daughter and 2 grandchildren, and back in the summer she was tested and received a positive result Prior to this I had notice a few problems as had my daughter, so the result was expected.

Now there is nothing, we told the kids, siblings and a few others and now nothing, I feel like we are waiting for a volcano to erupt, a feeling of false normal is the only way i can put it. There is nothing "to do", as a mum you make decisions and now there is nothing I can do as my daughter has to make the phone calls, fill out the forms, etc, but she is not doing so well, so we plod along together every day. For the first time in a long time i cannot make it better nor is there anything else I can do, want to take my baby in my arms and make it all go away.

I know this is not a question post, but how do others cope with the feeling of uselessness.
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Old 05-10-15, 10:43 AM   #2
Crystal
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Default Re: Don't know what I expected but it was not this.

Quote:
Originally Posted by glasshalffull View Post
I live with my daughter and 2 grandchildren, and back in the summer she was tested and received a positive result Prior to this I had notice a few problems as had my daughter, so the result was expected.

Now there is nothing, we told the kids, siblings and a few others and now nothing, I feel like we are waiting for a volcano to erupt, a feeling of false normal is the only way i can put it. There is nothing "to do", as a mum you make decisions and now there is nothing I can do as my daughter has to make the phone calls, fill out the forms, etc, but she is not doing so well, so we plod along together every day. For the first time in a long time i cannot make it better nor is there anything else I can do, want to take my baby in my arms and make it all go away.

I know this is not a question post, but how do others cope with the feeling of uselessness.
Hi - quite new to the MB but just wanted to reply to your post and say that I understand exactly what you mean by 'false normal'. My 'baby' too has HD and it tears me apart and I too just want it to go away. All we can really do is be there to offer support and practical help if it is wanted, but also to try and maybe keep the 'false normal' - perhaps there's nothing wrong with that as well and help them to retain as much independence for as long as possible. We do plod along together every day and perhaps that is o.k. too. I hope you stay in touch on the MB as I'm sure it may help you too with the myriad of emotions you are feeling. Not sure if that was any help, but just here to empathise with you. Your daughter will know you are there for her I'm sure and that may be enough for you both for the time being.
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Old 05-10-15, 12:13 PM   #3
shiraz
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Default Re: Don't know what I expected but it was not this.

I guess what you are going through is that your daughter has tested positive and because you know what hd is you are symptom watching...you have this black cloud hanging over you and the clock is slowly ticking....tick tock tick tock and you are waiting, bracing yourself for things to kick off. As a wild generalisation......middle age is the time that things start to worsen....so alls you can do is try and enjoy each day and live that false normal as happily as you can pushing the feelings of impending doom to the back of your mind. Your'e in limbo I guess...just waiting. Embrace the good times - there are many, and try not to think of this positive result as an imminent 'death sentence'. I guess really you are panicking and filled with worry for the future, I know I am. And yes, I feel useless too, and worry constantly about what will happen if I am ill and there is nothing I can do to stop it other than administer drugs to combat certain symptoms and simply be there to care. Which is what you are doing - caring. hd can be long and slow in developing....so enjoy your daughter and grand-children. Relish the good times while you can.....
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Old 05-10-15, 08:28 PM   #4
Cupcake
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Default Re: Don't know what I expected but it was not this.

Hi and welcome to the board. I feel for you and how helpless you feel. My babies are not tested yet, I dread the thought. As you say now the volcano is about to erupt. I felt similar when hubby was tested, how long, how bad etc., you will settle into some more calmer times, as you realise it is all very slow. Cherish the times together, and enjoy life, before one day you realise things are getting worse, and she can do less. When you are with some one all the time, it creeps up on you unexpected, you don't really notice, other than some of the behavioural issues. Keep strong, be there and try not to worry. Xxx
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Old 06-10-15, 06:56 PM   #5
Gabby
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Default Re: Don't know what I expected but it was not this.

Quote:
Originally Posted by glasshalffull View Post
I live with my daughter and 2 grandchildren, and back in the summer she was tested and received a positive result Prior to this I had notice a few problems as had my daughter, so the result was expected.

Now there is nothing, we told the kids, siblings and a few others and now nothing, I feel like we are waiting for a volcano to erupt, a feeling of false normal is the only way i can put it. There is nothing "to do", as a mum you make decisions and now there is nothing I can do as my daughter has to make the phone calls, fill out the forms, etc, but she is not doing so well, so we plod along together every day. For the first time in a long time i cannot make it better nor is there anything else I can do, want to take my baby in my arms and make it all go away.

I know this is not a question post, but how do others cope with the feeling of uselessness.
Sorry your daughter tested positive and is not doing too good , so hard not being in control and able to fix things when it's what us mums do .. but as many have said live for the day enjoy , do as much as you can together make lovely memories .. it won't stop the worry i know but you can talk laugh or look at pics of the good times when you get the bad days .. get plenty of support for you as well as its your friends and groups that keep you going when times are tough so you can be there for your family
take care
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Old 14-10-15, 10:13 AM   #6
glasshalffull
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Default Re: Don't know what I expected but it was not this.

Many thanks for your kind comments, so very hard to watch loved ones suffer in this way, but you are all right must live for now and then maybe will have less if only moments in the future. x
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Old 15-10-15, 12:05 AM   #7
Melody
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Default Re: Don't know what I expected but it was not this.

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Originally Posted by glasshalffull View Post
Many thanks for your kind comments, so very hard to watch loved ones suffer in this way, but you are all right must live for now and then maybe will have less if only moments in the future. x
Hi GHF, (hope you don't mind the abbreviation)

Sorry I missed your original post and todays is way down the latest posts too...

Just wanted to say, you are not alone... Crystal has given you good advice from an informed position.

Take a day at a time, enjoy your daughter and the grandchildren and just deal with whatever presents in the future as and when.

A horrible position to be in. Stay strong.

Take care. x
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Old 17-10-15, 01:25 PM   #8
Glasgowdad
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Default Re: Don't know what I expected but it was not this.

I know exact what you mean. It's my eldest son who has been struck down. I've had good advice from my new friends on this site. Only this community understands the nightmare we go through. I moved virtually next door to my son. I thought only of him and my grandkids. I ignored my 2nd wife. We were soul mates. It was either my way of dealing with this or as the say " the highway" I'm losing my boy and I lost my wife because HD claimed my lad, my wife and me! I didn't think of her needs, we stopped talking and just argued. The pressure is immense . I'm getting help in my relationship with this monster. Glasshalffull think about doing that the HD professionals are life savers
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Old 08-05-16, 10:52 PM   #9
glasshalffull
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Default Re: Don't know what I expected but it was not this.

would just like to say that things have calmed down and we very much live for the day. HD is not the boss in our house we are, we are very aware of the Curse in the corner, but refuse to let it take priority in our lives. Thank you all for your words of wisdom, it really helped.
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Old 09-05-16, 03:52 PM   #10
Gabby
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Default Re: Don't know what I expected but it was not this.

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Originally Posted by glasshalffull View Post
would just like to say that things have calmed down and we very much live for the day. HD is not the boss in our house we are, we are very aware of the Curse in the corner, but refuse to let it take priority in our lives. Thank you all for your words of wisdom, it really helped.

Well done so pleased for you .. Just remember you are allowed to still have bad days they to be expected we all get down sometimes .

Take care
Gabby
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