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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 17-05-17, 03:36 AM   #1
Hayl86
New Member
 
Join Date: May 2017
Posts: 2
Default Awaiting results

Hi, I'm unsure where to start really.. I'll try and be brief.
I have recently had my bloods taken for the HD test and am awaiting my results.
I'm 30. From Scotland but living in Australia. I've been here for 5 years now, all of my family are still in Scotland.
My biological father passed away when I was 4 (he was 26). His mum had HD as do 2 of my dads sisters and 1 of his brothers. The other 3 of his eldest siblings are unaffected by the gene.
I have the most amazing family back home in Scotland, although I have 5 brothers only one of them has the same dad as me. Although I consider them all as my full siblings i am thankful that the others will never have to worry or go through the process of being tested for this dreadful disease.
I've been with my partner for 3 years now.
My main reasons for wanting to be tested were:
1. my age. I would love to have children. As I'm sure any parent would agree you want to give your children the best possible start in life and if I have HD I do not want my child having a 50% chance of having it also.
2. my location. Because I'm so far away from my family and best friends I feel it would be irresponsible of me to 'wait and see' if I have HD. I can't expect my partner, his family and friends in Australia to care for me or make decisions for me to be cared for.
3. To be able to make plans. If I do have HD I'd like to be able to plan my own future. I.e nursing homes for further down the track ect. I'm very close with my cousins who have had to make those decisions for my aunties who have HD and If I'm able to do that for myself I won't have to put that pressure on anyone else. (Although they've taken it in their stride and are incredibly strong. They are beautiful people)
I find myself in some sort of turmoil while I wait for the results.
I'm not sure of the testing process in the U.K. But here in Australia it's usually a few appointments to discuss things before you start the process of testing. In between each appointment there is a month wait to let you think things over and be sure you want to have the testing done.
At my first appointment I told the dr my reasons and explained there was never a good time to know but more so I have to in order to plan my future. He was very informative and explained the disease itself very well along with highlighting both outcomes and discussed some cases over his career (obviously not in detail) he also done some mobility and movement tests and from this I showed no signs of HD. He told us the next step was to wait and hear back from the genetic dr who would be doing the actual test. My partner and I both left feeling positive. The call came and a few weeks later we met with the other Dr and social worker. I explained to them on the phone prior to this appointment I definitely wanted to be tested and again explained my reasons. I also asked what the usual process was, as I live 5 hours away from the hospital where the appointments were the social worker (who has worked in this field for over 20 years) told me they could compress a couple of the appointments providing the psychologist report didn't raise any concerns (which it didn't). Back to the appointment, I explained I was trying to remain positive. The social worker told me that was good however I should also allow thoughts of having HD, incase the results come back positive it won't be such a bombshell. This does make sense.
The doctors and social worker have all been wonderful and obviously know their stuff.
my bloods were taken just over 3 weeks ago and I'm probably looking at another 3-5 weeks before I'll get my results.
I'm really struggling with trying to process the emotions of both outcomes.
When I think of a positive result the first thing I think of is my partner and how it will affect him, his life now and his future (which makes me very sad on his behalf), then I think of my family and friends and again I feel very sad for them (I'm wiping away tears thinking about it now). Then I wonder what my future will hold and I find myself almost grieving for the daily things I enjoy now, the things I take for granted now. I used to work in a nursing home when I was 18 and I saw then how sad the people that live there were. Back then I felt sad for them and how many of their families had seed to forget about them in there. I know rationally this isn't the case as my aunties are still a huge part of my cousins daily lives. I then try to stop myself being upset and 'distract' myself from my own thoughts by keeping busy or quickly thinking of a negative result and I that I can 'carry on' living my day to life stress free from this horrible disease.. then a couple of days later (if I'm lucky) I find myself having the same battle.
Everyone closest to me seems to be 'annoying' me at the moment. They aren't saying anything about it or when I talk about it to my partner he used to quickly change the subject. After I brought this to his attention he said he wasn't aware. Now when I bring it up he listens but doesn't really respond. Again I know rationally he doesn't actually know what to say and he must be worried also but when I'm not thinking rationally I feel he's being selfish as If the shoe was on the other foot I'd be telling him not to worry either way we would deal with it together. He's never been one to express his emotions like that so I know I'm being unfair but I can't help it. Even my mum who i tell everything to and speak to on a daily basis and have done since I moved to Australia is 'annoying' me by not asking me about it. Again I know she doesn't actually know what to say. I did tell her this the other day when explaining my thoughts and emotions are everywhere. She told me she will always support me and she doesn't know what to say other than we will deal with the results as a family when we know what they are.
I did phone the social worker the other day and briefly told her the above she said she is pleased as this shows I'm processing it all. I told her I thought I would find it beneficial if I could speak to someone impartial until I know the results she encouraged this. I went to the gp (my usual gp has been very supportive through the process but is currently on annual leave) after explaining my situation I had to fill out a questionnaire (for people with depression) all of my answers were 'never' to the questions 'I often feel so low I can't get out of bed' 'I often feel like I want to hurt myself' ect.. so because I said never I don't think I'm deemed very urgent to see a psychologist. All I can do is wait for the call. In the mean time my best friend (who has been nothing short of amazing through out this process) suggested I read or write a blog.
I guess I just wondered if anyone else is experiencing or has experienced something similar? I feel like I'm driving myself mad. Thank you for taking the time to read this as I know it's all over the place.
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Old 23-05-17, 10:09 AM   #2
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Awaiting results

Quote:
Originally Posted by Hayl86 View Post
Hi, I'm unsure where to start really.. I'll try and be brief.
I have recently had my bloods taken for the HD test and am awaiting my results.
I'm 30. From Scotland but living in Australia. I've been here for 5 years now, all of my family are still in Scotland.
My biological father passed away when I was 4 (he was 26). His mum had HD as do 2 of my dads sisters and 1 of his brothers. The other 3 of his eldest siblings are unaffected by the gene.
I have the most amazing family back home in Scotland, although I have 5 brothers only one of them has the same dad as me. Although I consider them all as my full siblings i am thankful that the others will never have to worry or go through the process of being tested for this dreadful disease.
I've been with my partner for 3 years now.
My main reasons for wanting to be tested were:
1. my age. I would love to have children. As I'm sure any parent would agree you want to give your children the best possible start in life and if I have HD I do not want my child having a 50% chance of having it also.
2. my location. Because I'm so far away from my family and best friends I feel it would be irresponsible of me to 'wait and see' if I have HD. I can't expect my partner, his family and friends in Australia to care for me or make decisions for me to be cared for.
3. To be able to make plans. If I do have HD I'd like to be able to plan my own future. I.e nursing homes for further down the track ect. I'm very close with my cousins who have had to make those decisions for my aunties who have HD and If I'm able to do that for myself I won't have to put that pressure on anyone else. (Although they've taken it in their stride and are incredibly strong. They are beautiful people)
I find myself in some sort of turmoil while I wait for the results.
I'm not sure of the testing process in the U.K. But here in Australia it's usually a few appointments to discuss things before you start the process of testing. In between each appointment there is a month wait to let you think things over and be sure you want to have the testing done.
At my first appointment I told the dr my reasons and explained there was never a good time to know but more so I have to in order to plan my future. He was very informative and explained the disease itself very well along with highlighting both outcomes and discussed some cases over his career (obviously not in detail) he also done some mobility and movement tests and from this I showed no signs of HD. He told us the next step was to wait and hear back from the genetic dr who would be doing the actual test. My partner and I both left feeling positive. The call came and a few weeks later we met with the other Dr and social worker. I explained to them on the phone prior to this appointment I definitely wanted to be tested and again explained my reasons. I also asked what the usual process was, as I live 5 hours away from the hospital where the appointments were the social worker (who has worked in this field for over 20 years) told me they could compress a couple of the appointments providing the psychologist report didn't raise any concerns (which it didn't). Back to the appointment, I explained I was trying to remain positive. The social worker told me that was good however I should also allow thoughts of having HD, incase the results come back positive it won't be such a bombshell. This does make sense.
The doctors and social worker have all been wonderful and obviously know their stuff.
my bloods were taken just over 3 weeks ago and I'm probably looking at another 3-5 weeks before I'll get my results.
I'm really struggling with trying to process the emotions of both outcomes.
When I think of a positive result the first thing I think of is my partner and how it will affect him, his life now and his future (which makes me very sad on his behalf), then I think of my family and friends and again I feel very sad for them (I'm wiping away tears thinking about it now). Then I wonder what my future will hold and I find myself almost grieving for the daily things I enjoy now, the things I take for granted now. I used to work in a nursing home when I was 18 and I saw then how sad the people that live there were. Back then I felt sad for them and how many of their families had seed to forget about them in there. I know rationally this isn't the case as my aunties are still a huge part of my cousins daily lives. I then try to stop myself being upset and 'distract' myself from my own thoughts by keeping busy or quickly thinking of a negative result and I that I can 'carry on' living my day to life stress free from this horrible disease.. then a couple of days later (if I'm lucky) I find myself having the same battle.
Everyone closest to me seems to be 'annoying' me at the moment. They aren't saying anything about it or when I talk about it to my partner he used to quickly change the subject. After I brought this to his attention he said he wasn't aware. Now when I bring it up he listens but doesn't really respond. Again I know rationally he doesn't actually know what to say and he must be worried also but when I'm not thinking rationally I feel he's being selfish as If the shoe was on the other foot I'd be telling him not to worry either way we would deal with it together. He's never been one to express his emotions like that so I know I'm being unfair but I can't help it. Even my mum who i tell everything to and speak to on a daily basis and have done since I moved to Australia is 'annoying' me by not asking me about it. Again I know she doesn't actually know what to say. I did tell her this the other day when explaining my thoughts and emotions are everywhere. She told me she will always support me and she doesn't know what to say other than we will deal with the results as a family when we know what they are.
I did phone the social worker the other day and briefly told her the above she said she is pleased as this shows I'm processing it all. I told her I thought I would find it beneficial if I could speak to someone impartial until I know the results she encouraged this. I went to the gp (my usual gp has been very supportive through the process but is currently on annual leave) after explaining my situation I had to fill out a questionnaire (for people with depression) all of my answers were 'never' to the questions 'I often feel so low I can't get out of bed' 'I often feel like I want to hurt myself' ect.. so because I said never I don't think I'm deemed very urgent to see a psychologist. All I can do is wait for the call. In the mean time my best friend (who has been nothing short of amazing through out this process) suggested I read or write a blog.
I guess I just wondered if anyone else is experiencing or has experienced something similar? I feel like I'm driving myself mad. Thank you for taking the time to read this as I know it's all over the place.
Hello H.
Welcome to the Message board........Sorry to read of your situation and what you are having to deal with at this moment in time. I did not respond to your first post as I thought there would probably be others who might respond, who would have more understanding of how you are feeling as you go through this very difficult, personal, decision-making time. Your emotions, are bound to be in turmoil.... and also those of your family and those close to you. There will be many others on this message board who are facing the same decisions, or received either positive or negative results recently..... I'm hoping they may now see your post again and be able to offer something from their own perspective. Your message may just have got a bit 'lost' in the system......don't think it appeared under 'new members '? posts?

Best wishes
Crystal
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Old 23-05-17, 10:22 AM   #3
Hayl86
New Member
 
Join Date: May 2017
Posts: 2
Default Re: Awaiting results

Hi Crystal,

Thank you for your response. I wasn't sure where I was supposed to post so I maybe posted in the wrong chat.
Hopefully as you said people going through or having gone through a similar process might respond.
It's actually a weight off my shoulders just being able to off old and know that someone is listening (or reading as the case may be)
Thanks again
H
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Old 23-05-17, 07:32 PM   #4
Crystal
Approved Member
 
Join Date: Sep 2015
Posts: 212
Default Re: Awaiting results

Quote:
Originally Posted by Hayl86 View Post
Hi Crystal,

Thank you for your response. I wasn't sure where I was supposed to post so I maybe posted in the wrong chat.
Hopefully as you said people going through or having gone through a similar process might respond.
It's actually a weight off my shoulders just being able to off old and know that someone is listening (or reading as the case may be)
Thanks again
H
Hello again H........hope you don't mind my abbreviation.... correct me if need be!!
No problem at all in where you posted......it's just the way things are on the message board that posts sometimes get overlooked unintentionally...... or we get a bit diverted with other posts at times! This past week was HD awareness week...... many of us got a bit sidetracked with events that were happening.!

Keep posting and sharing! We are reading and listening.....

Crystal
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Old 05-07-17, 04:55 PM   #5
Hoping81
Approved Member
 
Join Date: Jun 2017
Location: Gateshead
Posts: 8
Default Re: Awaiting results

Quote:
Originally Posted by Hayl86 View Post
Hi, I'm unsure where to start really.. I'll try and be brief.
I have recently had my bloods taken for the HD test and am awaiting my results.
I'm 30. From Scotland but living in Australia. I've been here for 5 years now, all of my family are still in Scotland.
My biological father passed away when I was 4 (he was 26). His mum had HD as do 2 of my dads sisters and 1 of his brothers. The other 3 of his eldest siblings are unaffected by the gene.
I have the most amazing family back home in Scotland, although I have 5 brothers only one of them has the same dad as me. Although I consider them all as my full siblings i am thankful that the others will never have to worry or go through the process of being tested for this dreadful disease.
I've been with my partner for 3 years now.
My main reasons for wanting to be tested were:
1. my age. I would love to have children. As I'm sure any parent would agree you want to give your children the best possible start in life and if I have HD I do not want my child having a 50% chance of having it also.
2. my location. Because I'm so far away from my family and best friends I feel it would be irresponsible of me to 'wait and see' if I have HD. I can't expect my partner, his family and friends in Australia to care for me or make decisions for me to be cared for.
3. To be able to make plans. If I do have HD I'd like to be able to plan my own future. I.e nursing homes for further down the track ect. I'm very close with my cousins who have had to make those decisions for my aunties who have HD and If I'm able to do that for myself I won't have to put that pressure on anyone else. (Although they've taken it in their stride and are incredibly strong. They are beautiful people)
I find myself in some sort of turmoil while I wait for the results.
I'm not sure of the testing process in the U.K. But here in Australia it's usually a few appointments to discuss things before you start the process of testing. In between each appointment there is a month wait to let you think things over and be sure you want to have the testing done.
At my first appointment I told the dr my reasons and explained there was never a good time to know but more so I have to in order to plan my future. He was very informative and explained the disease itself very well along with highlighting both outcomes and discussed some cases over his career (obviously not in detail) he also done some mobility and movement tests and from this I showed no signs of HD. He told us the next step was to wait and hear back from the genetic dr who would be doing the actual test. My partner and I both left feeling positive. The call came and a few weeks later we met with the other Dr and social worker. I explained to them on the phone prior to this appointment I definitely wanted to be tested and again explained my reasons. I also asked what the usual process was, as I live 5 hours away from the hospital where the appointments were the social worker (who has worked in this field for over 20 years) told me they could compress a couple of the appointments providing the psychologist report didn't raise any concerns (which it didn't). Back to the appointment, I explained I was trying to remain positive. The social worker told me that was good however I should also allow thoughts of having HD, incase the results come back positive it won't be such a bombshell. This does make sense.
The doctors and social worker have all been wonderful and obviously know their stuff.
my bloods were taken just over 3 weeks ago and I'm probably looking at another 3-5 weeks before I'll get my results.
I'm really struggling with trying to process the emotions of both outcomes.
When I think of a positive result the first thing I think of is my partner and how it will affect him, his life now and his future (which makes me very sad on his behalf), then I think of my family and friends and again I feel very sad for them (I'm wiping away tears thinking about it now). Then I wonder what my future will hold and I find myself almost grieving for the daily things I enjoy now, the things I take for granted now. I used to work in a nursing home when I was 18 and I saw then how sad the people that live there were. Back then I felt sad for them and how many of their families had seed to forget about them in there. I know rationally this isn't the case as my aunties are still a huge part of my cousins daily lives. I then try to stop myself being upset and 'distract' myself from my own thoughts by keeping busy or quickly thinking of a negative result and I that I can 'carry on' living my day to life stress free from this horrible disease.. then a couple of days later (if I'm lucky) I find myself having the same battle.
Everyone closest to me seems to be 'annoying' me at the moment. They aren't saying anything about it or when I talk about it to my partner he used to quickly change the subject. After I brought this to his attention he said he wasn't aware. Now when I bring it up he listens but doesn't really respond. Again I know rationally he doesn't actually know what to say and he must be worried also but when I'm not thinking rationally I feel he's being selfish as If the shoe was on the other foot I'd be telling him not to worry either way we would deal with it together. He's never been one to express his emotions like that so I know I'm being unfair but I can't help it. Even my mum who i tell everything to and speak to on a daily basis and have done since I moved to Australia is 'annoying' me by not asking me about it. Again I know she doesn't actually know what to say. I did tell her this the other day when explaining my thoughts and emotions are everywhere. She told me she will always support me and she doesn't know what to say other than we will deal with the results as a family when we know what they are.
I did phone the social worker the other day and briefly told her the above she said she is pleased as this shows I'm processing it all. I told her I thought I would find it beneficial if I could speak to someone impartial until I know the results she encouraged this. I went to the gp (my usual gp has been very supportive through the process but is currently on annual leave) after explaining my situation I had to fill out a questionnaire (for people with depression) all of my answers were 'never' to the questions 'I often feel so low I can't get out of bed' 'I often feel like I want to hurt myself' ect.. so because I said never I don't think I'm deemed very urgent to see a psychologist. All I can do is wait for the call. In the mean time my best friend (who has been nothing short of amazing through out this process) suggested I read or write a blog.
I guess I just wondered if anyone else is experiencing or has experienced something similar? I feel like I'm driving myself mad. Thank you for taking the time to read this as I know it's all over the place.
Hi
Im currently in a similar situation as you. Havent yet had bloods taken but started the process to get this done. Im 35 and my father died of huntingtons at 38 (pretty much the reason why ive decided to get tested).
I get frustrated too as its really difficult to talk to family about it. Dont get me wrong they are all really supportive (husband and mam) but they dont really know what to say. My husband just seems to focus on the fact that i might not have it. I tend to flitter between hopeful and then am sure i have it. Its a yo yo effect.
I think im pretty together as a person however this is a difficult one to process isnt it. Well fingers crossed for you-keep in touch.And here if you want to talk.
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Old 24-07-17, 10:06 PM   #6
Ange<3
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Join Date: Jul 2017
Location: Newcastle
Posts: 17
Default Re: Awaiting results

Hi,

I am also going down the testing route and am expecting my results back in 2 days. Reading what you have put really got to me as a lot of that is exactly how I feel at the moment. I'm literally living in limbo at the moment, I'm so anxious to get my result and one minute I'll be sure I have it then the next I try and sway myself to thinking what if it's negative and carry on with my day to day life. I'm in a relationship at the moment and I have told him about it but he found this hard to deal with and said it changed everything so we split up for a bit. We are now back together and I have no idea what is going to happen if I get a positive result. Like you I feel myself getting annoyed with a lot at the moment, things that never used to annoy me. I've even had jokey comments at work from people who don't know about the HD that I'm 'not the same as I used to be' and I think this is because I'm very snappy. We should be planning having kids at our ages and getting excited about what's to come because life has only just begun yet we have to worry about this horrendous disease that no one knows nothing about. I literally feel like I'm a complete outcast and I get embarrassed telling people about it which I know I shouldn't but it's just how I feel. I really hope you have had a negative result. Please keep us posted x
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