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Old 03-08-17, 10:42 PM   #1
Maia burnip
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Join Date: Aug 2017
Posts: 4
Default Hello

I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
Maia
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Old 04-08-17, 11:49 AM   #2
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 351
Default Re: Hello

Quote:
Originally Posted by Maia burnip View Post
I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
Maia
I am so sorry Maia about your Dad.
it can be a very lonely place you sound like a lovely caring daughter have you looked up your local support group / HDA branch are you in contact with your Specialist Huntington's Disease Adviser for the area . ?

This may help to be able to meet with others in similar situation x

I will find some info if someone else doesn't do it first

Take care

Gabby
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Old 04-08-17, 11:26 PM   #3
LECS
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Join Date: Jul 2012
Location: Shrewsbury
Posts: 214
Default Re: Hello

Quote:
Originally Posted by Maia burnip View Post
I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
Maia
Hello and welcome to the board I am so sorry that you are here, I feel your pain it is everything that you say it is and I am not surprised that you are feeling hurt and tired. It does cause isolation I think people who are experiencing it can't fully comprehend how it actually is or how it really feels. It's because you can't see it. I grew up knowing that something awful was happening and my grandmother was ill and my mother was different to other mums but I wasn't told it was because of HD until I was in my twenties and by then I was angry and hurt that my mum was like she was, I didn't see that it was the HD that was causing her to behave as she was because it was told to me like it was a monster that was far away in the distance, something that would happen in middle and old age and that wasn't affecting her yet. The internet was not used to look things up as a matter of course then so I shut my mind to it and carried on rather carelessly. In hindsight I should have thrashed out every possible piece of information and asked every possible question of my parents and with my siblings and we should have talked and talked but we didn't everything became a huge secret. If I was my 19 year old self again I would asked what I could do to help, difficult because my mum would never accept any as she always believed there was nothing wrong with her, she never listened and you could never reasoned with her, ever, which made for horrible times over a lot of years and I lost all sense of what having a normal family was like and I went to work and wish I had a relationship with my mum like other people talked about. I never did. Longing for something you can't have causes much pain and my best advice would be to break things down to more manageable chunks, talk to someone who understands about how bereft you are feeling about your dad and then when you are coping a little better think about how you might resume your own life, you are only 19 and you still have a lot of living to do. My middle son was really supportive an absolute rock, came with me to all of my appointments I discuss everything I was feeling with him and began to rely on him then he announced that he would not be doing it anymore and that he could not cope with how sad it made him feel and if I truly loved him I would ask no more from him and he could be free to live his own life which was making him happy. I was gutted and I didn't go quietly and it took several months before I got it but I have now and although I'm really upset he's not part of my life anymore I understand that what I wanted he couldn't give and that's ok. He's only 22 but he had seen so much growing up with my mum as his grandmother and all of my HD behaviours, he actually deserves to do what he needs to. I'm not sure trying to be there for my mum and her rejection all those years actually helped either of us. How you find learning how to cope needs to be your decision and what works for you, you sound a very caring person and HD is rubbish and undeserved and unfair but it helps if you can find a little good along the way whether it's sharing a smile with your dad or doing something nice at work, or with friends or family. Find some support if you can perhaps see your GP there is a lot more help now than there used to be, my medical practice has a full time mental health nurse that you can book on the day, it's a lot for your young shoulders to cope with. I am no longer able to get to see the sea which I love and you live in one of my most favourite places but maybe you don't agree because you are not old and grey like me! Try and stay strong. Best wishes Lily.
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Old 04-08-17, 11:57 PM   #4
Crystal
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Join Date: Sep 2015
Posts: 232
Default Re: Hello

Quote:
Originally Posted by Maia burnip View Post
I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
Maia
Hello Maia..so sorry to hear how sad everything is for you. It is hard to follow on from the amazing eloquent, honest reply and help that Lily has given you....and so I won't even try to follow such heartfelt advice. For info. though...maybe take a look at one of the fact sheets' available to download from this website ' a young adults guide'.... which will give you details of specialist youth worker etc. and meetings specifically for young adults to attend, where others in your situation can help and support one another. You will find it under 'advice and support '.....I understand your feelings of isolation, but there will be help available to you through this website..... you are not alone...others on this message board will be here to listen.

Crystal
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Old 08-08-17, 04:55 PM   #5
Maia burnip
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Join Date: Aug 2017
Posts: 4
Default Re: Hello

Quote:
Originally Posted by Gabby View Post
I am so sorry Maia about your Dad.
it can be a very lonely place you sound like a lovely caring daughter have you looked up your local support group / HDA branch are you in contact with your Specialist Huntington's Disease Adviser for the area . ?

This may help to be able to meet with others in similar situation x

I will find some info if someone else doesn't do it first

Take care

Gabby
Hi Gabby,
Thank you for your reply!
I have tried to search for support groups but there doesn't seem to be any around where I live. I have just got in touch with a genetic counsellor to arrange a meet / chat. Im also looking in to doing cognitive behaviour therapy.
Maia
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Old 08-08-17, 05:15 PM   #6
Maia burnip
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Join Date: Aug 2017
Posts: 4
Default Re: Hello

Quote:
Originally Posted by LECS View Post
Hello and welcome to the board I am so sorry that you are here, I feel your pain it is everything that you say it is and I am not surprised that you are feeling hurt and tired. It does cause isolation I think people who are experiencing it can't fully comprehend how it actually is or how it really feels. It's because you can't see it. I grew up knowing that something awful was happening and my grandmother was ill and my mother was different to other mums but I wasn't told it was because of HD until I was in my twenties and by then I was angry and hurt that my mum was like she was, I didn't see that it was the HD that was causing her to behave as she was because it was told to me like it was a monster that was far away in the distance, something that would happen in middle and old age and that wasn't affecting her yet. The internet was not used to look things up as a matter of course then so I shut my mind to it and carried on rather carelessly. In hindsight I should have thrashed out every possible piece of information and asked every possible question of my parents and with my siblings and we should have talked and talked but we didn't everything became a huge secret. If I was my 19 year old self again I would asked what I could do to help, difficult because my mum would never accept any as she always believed there was nothing wrong with her, she never listened and you could never reasoned with her, ever, which made for horrible times over a lot of years and I lost all sense of what having a normal family was like and I went to work and wish I had a relationship with my mum like other people talked about. I never did. Longing for something you can't have causes much pain and my best advice would be to break things down to more manageable chunks, talk to someone who understands about how bereft you are feeling about your dad and then when you are coping a little better think about how you might resume your own life, you are only 19 and you still have a lot of living to do. My middle son was really supportive an absolute rock, came with me to all of my appointments I discuss everything I was feeling with him and began to rely on him then he announced that he would not be doing it anymore and that he could not cope with how sad it made him feel and if I truly loved him I would ask no more from him and he could be free to live his own life which was making him happy. I was gutted and I didn't go quietly and it took several months before I got it but I have now and although I'm really upset he's not part of my life anymore I understand that what I wanted he couldn't give and that's ok. He's only 22 but he had seen so much growing up with my mum as his grandmother and all of my HD behaviours, he actually deserves to do what he needs to. I'm not sure trying to be there for my mum and her rejection all those years actually helped either of us. How you find learning how to cope needs to be your decision and what works for you, you sound a very caring person and HD is rubbish and undeserved and unfair but it helps if you can find a little good along the way whether it's sharing a smile with your dad or doing something nice at work, or with friends or family. Find some support if you can perhaps see your GP there is a lot more help now than there used to be, my medical practice has a full time mental health nurse that you can book on the day, it's a lot for your young shoulders to cope with. I am no longer able to get to see the sea which I love and you live in one of my most favourite places but maybe you don't agree because you are not old and grey like me! Try and stay strong. Best wishes Lily.

Hi Lily,
Your reply meant a lot to me got me quite emotional, thank you for sharing your story. My dad on the other hand took all the help he got possibly get and almost takes advantage of me when i stay with him as he will get me to do things he is quite capable of doing. Im often treading on egg shells when I am around him as his temper will suddenly blow if he doesn't get his own way or if he gets stressed. He really has turned in to someone I no longer recognise the dad I knew was kind and selfless but the dad I know now is obnoxious and so very selfish. Im sorry to hear about your son, he may still be figuring out how to deal with it himself. I also can not speak to neither parent about how I feel. I just hope he finds his way back to you or i fear he may regret it in the near future. This is only the beginning of my journey and I already hate how much it has impacted my life. I can only try and be positive tho!
Maia
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Old 08-08-17, 05:19 PM   #7
Maia burnip
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Join Date: Aug 2017
Posts: 4
Default Re: Hello

Quote:
Originally Posted by Crystal View Post
Hello Maia..so sorry to hear how sad everything is for you. It is hard to follow on from the amazing eloquent, honest reply and help that Lily has given you....and so I won't even try to follow such heartfelt advice. For info. though...maybe take a look at one of the fact sheets' available to download from this website ' a young adults guide'.... which will give you details of specialist youth worker etc. and meetings specifically for young adults to attend, where others in your situation can help and support one another. You will find it under 'advice and support '.....I understand your feelings of isolation, but there will be help available to you through this website..... you are not alone...others on this message board will be here to listen.

Crystal
Hi Crystal,
Her reply was wonderful, all the replies make me feel a little less alone.
Ive looked but a while ago so I will certainly take a better look, ive also got in touch with the representative for where I live and has given me some advice! I hope this forum will help me as well im all ready surprised and touched I even got any replies.
Maia
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Old 22-08-17, 04:21 PM   #8
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 351
Default Re: Hello

[QUOTE=Maia burnip;65234]Hi Gabby,
Thank you for your reply!
I have tried to search for support groups but there doesn't seem to be any around where I live. I have just got in touch with a genetic counsellor to arrange a meet / chat. Im also looking in to doing cognitive behaviour therapy.
Maia[/QUOTE

good luck with the genetic counsellor and CBT therapy

There is a Devon branch website below

www.fightthefire.co.uk

contact Charles the Area Specialist Huntington Disease Adviser (SHDA )
Charles on: 01579 345480

Take care
Gabby
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Old 05-09-17, 12:04 AM   #9
Cupcake
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Join Date: Mar 2011
Location: East Anglia
Posts: 1,490
Default Re: Hello

Hello, and welcome, I am very sorry to read your post that your dad has HD and you are so young. My hubby had HD and I know how sad my sons felt as the dad who played rugby with them, laughed and joked slowly disappeared. Many a time as they are in their 20's now they said how they wished they could go to the pub for a pint with their dad and be like their friends. It is hard facing the future but you will find support and as you have seen Lily has written a lovely reply. Besides the South Devon branch I am wondering about the youth site for you HDYO with Matty Ellison?

Take care x
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Old 16-12-17, 07:11 PM   #10
melissa21
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Join Date: Oct 2012
Posts: 65
Default Re: Hello

Hi Maia,

I am very sorry to hear about your Dad Stay strong!!

Unfortunately i know exactly how you feel. I am 26 years old and my Dad passed away from HD. It is devastating and it does make you feel so alone as it is such a rare disease and no one really understands...even though they try!! I always feel alone too but it always helps when you find people in the same situation and you realise your not alone and you have a whole HD family out there!!!

Very soon after my Dad passed away I tested positive and got diagnosed young and i have now had symptoms for 5 years.

Have you been tested yourself?

Stay strong and remember that your Dad would want you to be happy <3

Melissa





Quote:
Originally Posted by Maia burnip View Post
I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
Maia
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