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Old 25-08-17, 01:52 AM   #11
Ange<3
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Join Date: Jul 2017
Location: Newcastle
Posts: 37
Default Re: Hello everyone

Quote:
Originally Posted by LECS View Post
Hi. I am so very sorry to read this, it breaks my heart to see more and more people receiving this news. I too tested positive around your age. You probably know a lot about the condition with your dad having it. I hope you find people who can be supportive to your needs and can be understanding of your condition. Put yourself first. If you need to ask anything, I am always happy to answer any questions you may have. Sending you lots of love. Lily.
Thanks lily.I'm just really unsure how to think or feel at the moment I'm just sort of numb. Did it take you a while to get your head around it? How old are you now if you don't mind me asking? My dad was not in my life much as I was younger. He was quite a drinker so I know he suffered a lot with the huntingtons but I'm unsure if he would of had an easier time if he hadn't of drunk so much and he's the only person ive actually known with the condition x
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Old 27-08-17, 01:18 AM   #12
LECS
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Location: Shrewsbury
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Default Re: Hello everyone

Quote:
Originally Posted by Ange<3 View Post
Thanks lily.I'm just really unsure how to think or feel at the moment I'm just sort of numb. Did it take you a while to get your head around it? How old are you now if you don't mind me asking? My dad was not in my life much as I was younger. He was quite a drinker so I know he suffered a lot with the huntingtons but I'm unsure if he would of had an easier time if he hadn't of drunk so much and he's the only person ive actually known with the condition x
Quote:
Originally Posted by Ange<3 View Post
Thanks lily.I'm just really unsure how to think or feel at the moment I'm just sort of numb. Did it take you a while to get your head around it? How old are you now if you don't mind me asking? My dad was not in my life much as I was younger. He was quite a drinker so I know he suffered a lot with the huntingtons but I'm unsure if he would of had an easier time if he hadn't of drunk so much and he's the only person ive actually known with the condition x
Hi Ange, of course you feel numb. No it didn't for me because I always knew I was different, I wasn't surprised when I found out I was positive, I just always knew. You mention you have memory difficulties and mood swings and it's a bit of a joke at work if I had my time again I would seek support from my workplace. I covered everything up and I moved from job to job, I temped for years, a couple of days, maybe a week then a different workplace. I blamed myself for having the condition and felt at fault because I wasn't as able as I pretended to be, which was an enormous feat to pull off on a daily basis. I'd always write copious notes of everything and repeat back everything that was asked to make doubly sure because of my poor memory and processing skills. It was something I did, long before I knew why. I did it because I needed to, in order to manage every job. You will need support and understanding from everyone. Perhaps those people you plan to tell could be educated by telling them about the condition and how it affects you. One thing I have always done right from the word go is live in the moment the very second, I only concern myself with what I need to think about now and not think about anything that might affect me next day, next week, next year. I still do it now. Whilst I worked I kept everything a secret and when I did seek help I found people who should have understood didn't and some didn't get it so the more it happened the more I found myself withdrawing. I listened to a professional speaking on the TV the other day about people who suffer with OCD and how it's very treatable once the person realises that something bad will not happen if they don't perform the ritual. It got me thinking about my own compulsions, I believe that anyone that does not believe like I do is wrong and so if I tried to stop my rituals I would be failing myself, it's not connected to something bad happening to someone else so it's not like the OCD he was referring to. The difficulty I've found is when you have a condition others try to tell you how you are feeling and why and often they are nowhere close to how it actually is. I have struggled with people laughing at me over the years and I struggle now with what I say being joked about but if I think really hard and consider where they are looking at it from, I can just about see that it might cause humour but because I don't like getting it wrong I'm overly sensitive. I don't drink Ange because I have zero tolerance of alcohol I used to be able to manage a little but even a few slips causes me to feel very drunk and uncoordinated so I no longer touch it. I think if I was talking to my 26 year old self I would say not to pretend, find something that I could do which caused me the least stress and not push myself unrealistically, to involve myself in things that gave me enjoyment and to seek distraction from thinking about the condition, to insist on support and be kind to self. Because I'm in the know so to speak I also believe that anyone who has HD or might have or cares for someone who does or who is a child of should be treated with the atmost of care and anything that they need should not need to be validated or verified and people should be going out of their way to help at every juncture but as my Gary tells me they don't because they couldn't possibly know what those with HD do because if they did then they would. I feel 29 was my noticeable year, although everything before 29 is questionable my family cite 29 as my beginning and I'm now 50, I have no idea about 51 not even 50 and half, I am where I am and I still have a massive job to do. Find the good in the moment and crack on. I'm sending you a huge hug and thinking of you. Lily
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Old 27-11-17, 05:12 AM   #13
Hayl86
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Join Date: May 2017
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Default Re: Hello everyone

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Originally Posted by Ange<3 View Post
Hi unfortunately I tested positive xx
Hi Angela,

I am so sorry to read your results. Although Iím not in the same boat I can relate to how you felt throughout the process and am here if you would like to chat. X
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Old 12-12-17, 05:27 PM   #14
Ange<3
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Hi Angela,

I am so sorry to read your results. Although Iím not in the same boat I can relate to how you felt throughout the process and am here if you would like to chat. X
Hi Hayley that's very nice of you to say thank you :) x
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Old 16-12-17, 06:03 PM   #15
melissa21
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Join Date: Oct 2012
Posts: 65
Default Re: Hello everyone

Hi Angela,

I am so sorry to hear you tested positive!! This is very sad

Unfortunately i had the same thing happen to me!!

I got tested when i was 21 years old and i tested positive and i have got a high CAG which means my symptoms started young. I am 26 years old and i have had symptoms for 5 years. I am in the early stages of HD.

I know how hard it is getting tested!! It was very hard and i am sorry you had to go though that too!!

How are you feeling now you have got your results?

Do you have any symptoms yet?

Melissa





Quote:
Originally Posted by Ange<3 View Post
Hello everyone,

I just thought I'd introduce myself to everyone on this board. My name is Angela I'm 26 and my Dad had HD. He inherited this from his Mam and his symptoms started around age 29. He passed away last year aged 60. I've always pushed this away in the back of my head but felt like because I'm at an age where I will be wanting kids etc in the next few years I should get tested and am currently awaiting on my results (appointment is Thursday). The very thought of getting these has my stomach in knots. One minute I'm ok and the next I'm sobbing my heart out at the very thought of a positive result. I feel like I may have symptoms as a lot of people comment on my memory problems (it's like a current joke in both of my jobs as it's that bad!) also I feel I may have anxiety and am definitely getting mood swings and letting things wind me up more than I used to which people have also commented on. I'm also at a loss with what to do with my partner. I'm not sure if I should have him at the appointment with me or if it would be easier if he wasn't there as I'm not even sure wether he will want to stay with me if it's a positive result and I'm not sure if they will be discussing the amount of repeats and things which he doesn't know the meaning of. Does anyone know how the results appointment goes? Do you get the result straight away when you go in?

Thank you for your time.

Angela
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Old 05-01-18, 02:24 AM   #16
Ange<3
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Join Date: Jul 2017
Location: Newcastle
Posts: 37
Default Re: Hello everyone

Quote:
Originally Posted by melissa21 View Post
Hi Angela,

I am so sorry to hear you tested positive!! This is very sad

Unfortunately i had the same thing happen to me!!

I got tested when i was 21 years old and i tested positive and i have got a high CAG which means my symptoms started young. I am 26 years old and i have had symptoms for 5 years. I am in the early stages of HD.

I know how hard it is getting tested!! It was very hard and i am sorry you had to go though that too!!

How are you feeling now you have got your results?

Do you have any symptoms yet?

Melissa
Hi Melissa, itís definitely not the best words to hear is it. But the good thing about knowing is being able to try and do things to prevent it such as eating healthy and excercising. Iím so sorry to hear you are having symptoms at such a young age. I thought I was getting them as my memory is extremely bad but I was at the clinic today for a proper assessment and he seemed to think Iím not. What sort of symptoms are you experiencing? Xx
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Old 30-01-18, 10:03 PM   #17
Hoping81
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Join Date: Jun 2017
Location: Gateshead
Posts: 17
Default Re: Hello everyone

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Originally Posted by Ange<3 View Post
Hi thanks hoping. It's definitely not what I wanted to hear and I am struggling to let it sink in but that's probably normal. I'm just trying to get on with everything now. It's all I can do really. Need to try and keep healthy and excercise to hopefully keep it at bay for as long as I possibly can. Do you know when you get your result? Xx
Hi ange.. ive not been on here for a while as think i just needed a bit of time off from it all (if you know what i mean). Im getting my bloods done next thursday. So in about 4 weeks im going to know either way.
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Old 15-04-18, 11:38 PM   #18
Ange<3
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Join Date: Jul 2017
Location: Newcastle
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Default Re: Hello everyone

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Originally Posted by Hoping81 View Post
Hi ange.. ive not been on here for a while as think i just needed a bit of time off from it all (if you know what i mean). Im getting my bloods done next thursday. So in about 4 weeks im going to know either way.
Hi hoping sorry I also havnt been on here and yes I know exactly what you mean I felt a bit like that myself which is why Iíve not been on! So have you found out now then? Really really hoping you received some good news please let me know xxx
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