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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

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Old 23-04-18, 03:26 PM   #1
lucybee
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Default New to forum- looking for some advice

Hi there, Iím new to the forum Iím just looking for some advice.

Just over a year ago my mum was diagnosed with HD. We had known something was not right for about 6 years and doctors reckon thatís when her symptoms started. After my mum was diagnosed my grandfather who has now passed was also given a positive diagnosis, his HD was very late onset therefore did not develop such severe symptoms. My mum has 4 siblings none of which have inherited the gene.

My mums symptoms have gotten a lot worse and I can see her slowly loosing herself and struggling more each day. Iím the eldest sibling out of 3, Iím 19 years old, my sister 18 and my brother 14. We do not have a father in the picture as he passed away when we were young. Iím struggling to cope with looking after my mum and to look after my siblings and trying to make everything seem normal for them. Alongside that Iím absolutely terrified of inheriting the gene. I have developed terrible anxiety and even the slightest twitch before I go to sleep or shake in my fingers leaves me petrified and convinced I have HD and this is the start of it. I donít think I am in the right frame of mind to go for genetic testing because a positive result would completely kill me.

Does anyone have any advice on how to make my home environment still be a happy place? Me and my siblings are struggling to stay positive and my mum is feeling very down about it all. Im just finding it really hard to cope at the moment and struggling to see my mum turn into somebody I donít recognise. Iím trying to stay positive for my siblings but itís so difficult to take care of everybody all the time and constantly worry about what the future holds for us. Any advice anyone has on how to cope living with someone with HD or how I can still make it fairly normal for my siblings? especially my young brother).

(Didnít realise I had written a novel!)

Thanks!
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Old 25-04-18, 01:14 PM   #2
Allan
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Default Re: New to forum- looking for some advice

.
Hi Lucy

Thatís just the first chapter. Letís hope that the second can find you in a better place.

Have you contacted the Scottish HA? They have an excellent Youth Service. Also have a look at the HD Youth Organization for lots of good advice.

If you contact Social Services the Adult Social Care Team should be able to give your mum an assessment as to her Care needs. This could also involve an Occupational Therapist. Then, through your mumís GP, get a referral to a Dietitian, a Physiotherapist and a Speech and Language Therapist (mainly for swallowing and choking issues). There may be other services available too.

Itís a lot of organisation for you in the first instance but once youíve got these professionals in place it might allow you more and better opportunities to ďguideĒ your brother and sister through this - with the involvement of the HDS Youth Service and others.

Best wishes Ö


.
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Old 25-04-18, 03:17 PM   #3
lucybee
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Default Re: New to forum- looking for some advice

Hi Allan, thanks for responding. My mum has been seen by by the physios, dieticians and OTs. The SHA are amazing at what they do and my mums support worker is great. But obviously they canít be there all the time and itís just difficult to know that this is the start of a very long journey that wonít get better.

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Originally Posted by Allan View Post
.
Hi Lucy

Thatís just the first chapter. Letís hope that the second can find you in a better place.

Have you contacted the Scottish HA? They have an excellent Youth Service. Also have a look at the HD Youth Organization for lots of good advice.

If you contact Social Services the Adult Social Care Team should be able to give your mum an assessment as to her Care needs. This could also involve an Occupational Therapist. Then, through your mumís GP, get a referral to a Dietitian, a Physiotherapist and a Speech and Language Therapist (mainly for swallowing and choking issues). There may be other services available too.

Itís a lot of organisation for you in the first instance but once youíve got these professionals in place it might allow you more and better opportunities to ďguideĒ your brother and sister through this - with the involvement of the HDS Youth Service and others.

Best wishes Ö


.
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Old 26-04-18, 09:06 PM   #4
Zlmd2017
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Default Re: New to forum- looking for some advice

Well I think you are already doing a great job at 19 you have a hell of alot on your young shoulders. I tested positive for carrying the hd gene last November I have 3 children and a grandchild they all know about my diagnosis and it was heartbreaking telling them but like you they have taken it in their stride. How to cope each day and make a normal environment?? Just take each day as it comes some will be ok some will be awful but you will learn to live with this **** disease as I have too and others on this board anyway keep your chin up always here if you need support xx
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Old 27-04-18, 03:38 PM   #5
lucybee
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Default Re: New to forum- looking for some advice

Thank you so much just feeling down about it recently but youíre totally right like you said just take each day as it comes Xx

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Originally Posted by Zlmd2017 View Post
Well I think you are already doing a great job at 19 you have a hell of alot on your young shoulders. I tested positive for carrying the hd gene last November I have 3 children and a grandchild they all know about my diagnosis and it was heartbreaking telling them but like you they have taken it in their stride. How to cope each day and make a normal environment?? Just take each day as it comes some will be ok some will be awful but you will learn to live with this **** disease as I have too and others on this board anyway keep your chin up always here if you need support xx
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Old 27-04-18, 09:47 PM   #6
Gabby
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Default Re: New to forum- looking for some advice

Quote:
Originally Posted by lucybee View Post
Hi there, Iím new to the forum Iím just looking for some advice.

Just over a year ago my mum was diagnosed with HD. We had known something was not right for about 6 years and doctors reckon thatís when her symptoms started. After my mum was diagnosed my grandfather who has now passed was also given a positive diagnosis, his HD was very late onset therefore did not develop such severe symptoms. My mum has 4 siblings none of which have inherited the gene.

My mums symptoms have gotten a lot worse and I can see her slowly loosing herself and struggling more each day. Iím the eldest sibling out of 3, Iím 19 years old, my sister 18 and my brother 14. We do not have a father in the picture as he passed away when we were young. Iím struggling to cope with looking after my mum and to look after my siblings and trying to make everything seem normal for them. Alongside that Iím absolutely terrified of inheriting the gene. I have developed terrible anxiety and even the slightest twitch before I go to sleep or shake in my fingers leaves me petrified and convinced I have HD and this is the start of it. I donít think I am in the right frame of mind to go for genetic testing because a positive result would completely kill me.

Does anyone have any advice on how to make my home environment still be a happy place? Me and my siblings are struggling to stay positive and my mum is feeling very down about it all. Im just finding it really hard to cope at the moment and struggling to see my mum turn into somebody I donít recognise. Iím trying to stay positive for my siblings but itís so difficult to take care of everybody all the time and constantly worry about what the future holds for us. Any advice anyone has on how to cope living with someone with HD or how I can still make it fairly normal for my siblings? especially my young brother).

(Didnít realise I had written a novel!)

Thanks!
Hi Lucybee sorry you find yourself in this position . Your GP can help with stress and depression and the Scottish Huntington's disease as mentioned before . Have a look at the sites suggested by Allan there is also a lady called Annie Mack near you who runs LiveforLive worth looking on facebook . Hopefully things will settle again as others have said and you learn to work round things still try and do the things you have always done as you say keeps things as normal as you can . Sure Mum would not want you to give up your life . If she cant manage things get help don't try and take it all on yourself and as for testing that's something you can do or not do you will know when you are ready .

Take care
Gabby x
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Old 28-04-18, 11:28 PM   #7
lucybee
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Default Re: New to forum- looking for some advice

Thanks gabby Iím feeling a bit better reading more threads and realising Iím not alone with these feelings and with this disease xx

Quote:
Originally Posted by Gabby View Post
Hi Lucybee sorry you find yourself in this position . Your GP can help with stress and depression and the Scottish Huntington's disease as mentioned before . Have a look at the sites suggested by Allan there is also a lady called Annie Mack near you who runs LiveforLive worth looking on facebook . Hopefully things will settle again as others have said and you learn to work round things still try and do the things you have always done as you say keeps things as normal as you can . Sure Mum would not want you to give up your life . If she cant manage things get help don't try and take it all on yourself and as for testing that's something you can do or not do you will know when you are ready .

Take care
Gabby x
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Old 17-05-18, 03:59 AM   #8
Tom B
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Default Re: New to forum- looking for some advice

Hi Lucy,

First off I'm sorry for this late reply but better late than never.

My wife's father was diagnosed late in life, at that time our children were 21 and 24. My wife was convinced she had HD, like you when she fell asleep and twitched' or 'startled' herself awake it created a massive anxiety. She 'twiddled' her thumbs constantly and to say she was clumsy was an understatement, at one point she had dropped so many cups and plates I thought she was practicing juggling! When we told the kids they reacted totally differently, our son became anxious, our daughter's attitude was ' what will be will be'.

My wife went through 11 months of counselling after which she was tested and she tested negative. Her father, grandmother, aunt and uncle all had HD, so this proves the chain can be broken. The counselling was fantastic, it helped her so much. She didn't have to be tested after it but she chose to and thankfully everything was 'brand new!' I would suggest that you speak to the HDA and consider the counselling, maybe the testing isn't for you at the minute but the counselling really helps.

It's tough for you to have all this at your age but with support you'll get through this. Your mum is very lucky to be surrounded by those who love and care for her so much. Having lost my my mother to cancer (when I was 8) and watch my father deteriorate after a stroke, I understand how hard this is for you, I hope you realise that your support for her is a massive help, but you need support to, try and get as much as you can.

When I found out I was terrified for my wife and children and it took me at least a month before I could think straight, the counselling helped me tremendously, one day I was positive, the next all I could see was the down side but the counselling really, really helped. The HDA was a great support and in return I've supported them in any way I can.

My wife was convinced (after seeing so many of her family with HD) that she had HD, she showed many of the symptoms and she tested negative, there is hope, I used to dream we would have the 'all clear' and we did. Life's not all negative, it may seem that way sometimes but there's light at the end of the tunnel. NEVER FORGET THIS!

We're thinking about your mam and your family, were praying to whatever's out there that you stay healthy and it's not too long before happiness finds it way back in your life. Stay strong kid, believe me, dreams do come true!

Take care,

Tom


Quote:
Originally Posted by lucybee View Post
Hi there, Iím new to the forum Iím just looking for some advice.

Just over a year ago my mum was diagnosed with HD. We had known something was not right for about 6 years and doctors reckon thatís when her symptoms started. After my mum was diagnosed my grandfather who has now passed was also given a positive diagnosis, his HD was very late onset therefore did not develop such severe symptoms. My mum has 4 siblings none of which have inherited the gene.

My mums symptoms have gotten a lot worse and I can see her slowly loosing herself and struggling more each day. Iím the eldest sibling out of 3, Iím 19 years old, my sister 18 and my brother 14. We do not have a father in the picture as he passed away when we were young. Iím struggling to cope with looking after my mum and to look after my siblings and trying to make everything seem normal for them. Alongside that Iím absolutely terrified of inheriting the gene. I have developed terrible anxiety and even the slightest twitch before I go to sleep or shake in my fingers leaves me petrified and convinced I have HD and this is the start of it. I donít think I am in the right frame of mind to go for genetic testing because a positive result would completely kill me.

Does anyone have any advice on how to make my home environment still be a happy place? Me and my siblings are struggling to stay positive and my mum is feeling very down about it all. Im just finding it really hard to cope at the moment and struggling to see my mum turn into somebody I donít recognise. Iím trying to stay positive for my siblings but itís so difficult to take care of everybody all the time and constantly worry about what the future holds for us. Any advice anyone has on how to cope living with someone with HD or how I can still make it fairly normal for my siblings? especially my young brother).

(Didnít realise I had written a novel!)

Thanks!
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Old 19-05-18, 02:41 PM   #9
lucybee
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Join Date: Apr 2018
Location: Glasgow
Posts: 9
Default Re: New to forum- looking for some advice

Thank you so much Tom for your kind words, feeling more positive about it all now- although I know there will be days I will still feel scared. Youíre right in saying what will be will be. Thanks again, take care xx




Quote:
Originally Posted by Tom B View Post
Hi Lucy,

First off I'm sorry for this late reply but better late than never.

My wife's father was diagnosed late in life, at that time our children were 21 and 24. My wife was convinced she had HD, like you when she fell asleep and twitched' or 'startled' herself awake it created a massive anxiety. She 'twiddled' her thumbs constantly and to say she was clumsy was an understatement, at one point she had dropped so many cups and plates I thought she was practicing juggling! When we told the kids they reacted totally differently, our son became anxious, our daughter's attitude was ' what will be will be'.

My wife went through 11 months of counselling after which she was tested and she tested negative. Her father, grandmother, aunt and uncle all had HD, so this proves the chain can be broken. The counselling was fantastic, it helped her so much. She didn't have to be tested after it but she chose to and thankfully everything was 'brand new!' I would suggest that you speak to the HDA and consider the counselling, maybe the testing isn't for you at the minute but the counselling really helps.

It's tough for you to have all this at your age but with support you'll get through this. Your mum is very lucky to be surrounded by those who love and care for her so much. Having lost my my mother to cancer (when I was 8) and watch my father deteriorate after a stroke, I understand how hard this is for you, I hope you realise that your support for her is a massive help, but you need support to, try and get as much as you can.

When I found out I was terrified for my wife and children and it took me at least a month before I could think straight, the counselling helped me tremendously, one day I was positive, the next all I could see was the down side but the counselling really, really helped. The HDA was a great support and in return I've supported them in any way I can.

My wife was convinced (after seeing so many of her family with HD) that she had HD, she showed many of the symptoms and she tested negative, there is hope, I used to dream we would have the 'all clear' and we did. Life's not all negative, it may seem that way sometimes but there's light at the end of the tunnel. NEVER FORGET THIS!

We're thinking about your mam and your family, were praying to whatever's out there that you stay healthy and it's not too long before happiness finds it way back in your life. Stay strong kid, believe me, dreams do come true!

Take care,

Tom
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Old 19-05-18, 07:50 PM   #10
Tom B
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Join Date: Oct 2015
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Posts: 22
Default Re: New to forum- looking for some advice

Hi (again) Lucy,


On those days when you feel scared, angry or a little lost, get yourself on the message board and get your feelings out there. Never forget, (I hate to sound like Michael Jackson) but you are not alone! We never told anyone about the possibility of my wife having HD and we didn't tell the kids till a couple of weeks before my wife had her test. I was frightened to use the message board and that was a mistake, there are lots of people out there who will help get you through your bad days.

Take it easy, we're thinking of you and your family, keep your chin up!

Tom.


Quote:
Originally Posted by lucybee View Post
Thank you so much Tom for your kind words, feeling more positive about it all now- although I know there will be days I will still feel scared. Youíre right in saying what will be will be. Thanks again, take care xx
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