huntingtons disease and a siter i have not seen for 12 years
#1
Scooby Regular
Thread Starter
iTrader: (2)
Join Date: Jan 2009
Location: liverpool
Posts: 2,440
Likes: 0
Received 0 Likes
on
0 Posts
huntingtons disease and a siter i have not seen for 12 years
might not be the best place for some advice or help but you never know!
to try and be brief, i was in care until 5 then adopted. very traumatic at the time and effected me in my younger years emotionally. when i was 15 i by chance got back in touch with my mum through a girl in school, i went there that night and remained in contact for around 3 years. after a spell in the army and the mental strain that is suffered by most in "active" service, with a marriage that was breaking down and un-prescribed self medication i thought it may be a good idea for "destinys sake" to re-visit my biological family. "mum" was well with a committed partner, my sister was around 18 with a new baby, all under the same roof. things looked well for them so i decided for the best to lead my own life for my sake, along with everyone elses. admittedly, at the time my head was up my ****, but i was not aware at the time how much.
15 yrs passed and in july, through my ex on facebook i recieved a message from one of my half sisters (3 half sisters and 1 half brother- diffrent dad from me), the message said i have 1 brother and 1 sister that has huntingtons disease and if i wished, to perhaps, get in touch. which i did pretty much within 24 hrs.
my brother sadly lives as a recluse apparently and will not allow anyone near him ( mainly due to his mental state) whereas my sister i have seen, and will continue to see from now on. she is totally diffrent in every way. i have as a result booked my holidays with work for the following year with a 10 week gap between each week off so as to pend as much quality time with her as possible. i am not looking for the usual "sorry to hear " responses despite them being helpful, but i am very new to all this and if there is anyone that could shed any light on how to deal with the time left i would greatly appreciate it. Lee.
to try and be brief, i was in care until 5 then adopted. very traumatic at the time and effected me in my younger years emotionally. when i was 15 i by chance got back in touch with my mum through a girl in school, i went there that night and remained in contact for around 3 years. after a spell in the army and the mental strain that is suffered by most in "active" service, with a marriage that was breaking down and un-prescribed self medication i thought it may be a good idea for "destinys sake" to re-visit my biological family. "mum" was well with a committed partner, my sister was around 18 with a new baby, all under the same roof. things looked well for them so i decided for the best to lead my own life for my sake, along with everyone elses. admittedly, at the time my head was up my ****, but i was not aware at the time how much.
15 yrs passed and in july, through my ex on facebook i recieved a message from one of my half sisters (3 half sisters and 1 half brother- diffrent dad from me), the message said i have 1 brother and 1 sister that has huntingtons disease and if i wished, to perhaps, get in touch. which i did pretty much within 24 hrs.
my brother sadly lives as a recluse apparently and will not allow anyone near him ( mainly due to his mental state) whereas my sister i have seen, and will continue to see from now on. she is totally diffrent in every way. i have as a result booked my holidays with work for the following year with a 10 week gap between each week off so as to pend as much quality time with her as possible. i am not looking for the usual "sorry to hear " responses despite them being helpful, but i am very new to all this and if there is anyone that could shed any light on how to deal with the time left i would greatly appreciate it. Lee.
#2
Scooby Regular
The good thing about this site is someone is always willing to help mate, I have had snippets of help through a few tough times by the very generous members we have here. Sometimes its just nice to air how your feeling without worry of being judged. Good luck mate.
#4
Scooby Regular
iTrader: (1)
Join Date: Jan 1999
Location: UK
Posts: 15,271
Likes: 0
Received 0 Likes
on
0 Posts
I think you have a lot of heart both for what you are doing and what you have posted up here.
Wish you all the best and, I know it's a cliche, just be yourself. In the same way you don't people to feel sorry for you, then I am sure you will be the same with your sister. Being there is a huge thing on it's own.
Good luck
Wish you all the best and, I know it's a cliche, just be yourself. In the same way you don't people to feel sorry for you, then I am sure you will be the same with your sister. Being there is a huge thing on it's own.
Good luck
#5
Cooking on Calor
iTrader: (23)
I cant really offer anything in the way of support as I have never personally been through anything like that.
I would say that the NHS website has always come up with a great in-sight into any health issue's that I or my family has had in the past.
I hope this helps: http://www.nhs.uk/Conditions/Hunting.../Symptoms.aspx
I would say that the NHS website has always come up with a great in-sight into any health issue's that I or my family has had in the past.
I hope this helps: http://www.nhs.uk/Conditions/Hunting.../Symptoms.aspx
#6
Scooby Regular
Join Date: Apr 2006
Location: Pleiades
Posts: 1,294
Likes: 0
Received 0 Likes
on
0 Posts
I know a little of the illness as my friend's dad and sister both had it (recently another friend was tested and has been told she will get it at some point). If you can, just be there for them, they may find themselves being ignored by friends/ family etc because people just don't know how to handle it. Quite often if someone is ill they get fed up of talking about their health, hospitals etc, they just want to be treated as normal, being asked "How are you?" gets boring if that's the first thing everyone says to them!
I would try to get to visit your brother, the illness has some distressing symptoms so it is understandable he might feel he has to hide away, let him know that you are not bothered by the symptoms and you just want to see him, at least you will have given it a go.
I would try to get to visit your brother, the illness has some distressing symptoms so it is understandable he might feel he has to hide away, let him know that you are not bothered by the symptoms and you just want to see him, at least you will have given it a go.
#7
Scooby Regular
Join Date: Mar 2000
Location: Weston Super Mare, Somerset.
Posts: 14,102
Likes: 0
Received 0 Likes
on
0 Posts
Well good on you pal for the positive action you are taking. That's quite a story!
I'd just say take each day/week as it comes and have some fun together without dwelling on the dark side of things.
Oh and ignore the "shouldn't be posting on here" brigade
atb. dl
I'd just say take each day/week as it comes and have some fun together without dwelling on the dark side of things.
Oh and ignore the "shouldn't be posting on here" brigade
atb. dl
Trending Topics
#8
Whether you wanted to hear it or not, it is a shame to hear about your 1/2 brother and sister with that awful disease. It is a pity your brother feels like he does but a very good thing that you have got in touch with your sister. I am sure it is very helpful for her that you are seeing her regularly. You had a difficult start in life and it is good that you are taking the action that you are doing. That will help her a great deal.
Les
Les
#10
Scooby Regular
iTrader: (6)
Well firstly lad considering your life so far you've become a food bloke and should be proud ... unless you hide it well secondly I would say you owe them nothing ... so anything you decided to do is totally out of the goodness of your heart!
Personally I would get checked for huntings too as if memory serves there's a good chance you can have it too ?
Good luck mate
Personally I would get checked for huntings too as if memory serves there's a good chance you can have it too ?
Good luck mate
#11
Scooby Regular
iTrader: (6)
Well firstly lad considering your life so far you've become a food bloke and should be proud ... unless you hide it well secondly I would say you owe them nothing ... so anything you decided to do is totally out of the goodness of your heart!
Personally I would get checked for huntings too as if memory serves there's a good chance you can have it too ?
Good luck mate
Personally I would get checked for huntings too as if memory serves there's a good chance you can have it too ?
Good luck mate
#12
Scooby Regular
Join Date: Jan 2000
Location: Disco, Disco!
Posts: 21,825
Likes: 0
Received 0 Likes
on
0 Posts
Be yourself and i would read up on the disease and its effects and this may well help 'shape' your first and future meeting up's.
start here: http://www.hdsa.org/
Good luck
start here: http://www.hdsa.org/
Good luck
#13
Scooby Regular
Join Date: Jan 2003
Location: Not the Wild West
Posts: 1,567
Likes: 0
Received 0 Likes
on
0 Posts
I knew someone with this disease about 10 years ago. She inherited it from her mother and she had a sister that wouldn`t get tested because she didn`t want to know incase it was positive. If it was me I would want to know. Dont assume you have it because it doesnt always get passed on. Read as much about it as you can as most people are scared of things they dont understand. It also depends how old you are, it seems to start taking effect at around 30 till 50. Keep us posted
#14
Scooby Regular
Join Date: Jan 2000
Location: Disco, Disco!
Posts: 21,825
Likes: 0
Received 0 Likes
on
0 Posts
I knew someone with this disease about 10 years ago. She inherited it from her mother and she had a sister that wouldn`t get tested because she didn`t want to know incase it was positive. If it was me I would want to know. Dont assume you have it because it doesnt always get passed on. Read as much about it as you can as most people are scared of things they dont understand. It also depends how old you are, it seems to start taking effect at around 30 till 50. Keep us posted
#17
Scooby Regular
Thread Starter
iTrader: (2)
Join Date: Jan 2009
Location: liverpool
Posts: 2,440
Likes: 0
Received 0 Likes
on
0 Posts
to clarify, i am fine. the gene was passed on from their father to 2 of his 3 kids. pimmo, you are right bud, i do owe them nothing, but, my past is the past, i am not going to ruin my or anyone elses future due to resentments etc.
#18
Scooby Regular
Thread Starter
iTrader: (2)
Join Date: Jan 2009
Location: liverpool
Posts: 2,440
Likes: 0
Received 0 Likes
on
0 Posts
Be yourself and i would read up on the disease and its effects and this may well help 'shape' your first and future meeting up's.
start here: http://www.hdsa.org/
Good luck
start here: http://www.hdsa.org/
Good luck
Thread
Thread Starter
Forum
Replies
Last Post