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Old 25-04-18, 06:31 PM   #1
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Hi everyone

Hi everyone I've been a member since last year wrote lots of messages etc then deleted them lol. I tested positive for carrying the hd gene in November 2017. As you all know it was the worst possible news as I have 3 great kids and grand kids my count is 39 so I may or may not get symptoms but that dosent matter to me as I'm aware my babies can get higher. Those loads more I want too say and I will but i need to be approved love and blessingsxxx
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Old 26-04-18, 02:06 PM   #2
HDAModerator
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Join Date: Jul 2007
Posts: 61
Default Re: Hi everyone

Welcome to the Board! I am sure you will get plenty of replies from other members very soon! Please go ahead and post!
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Old 27-04-18, 09:37 PM   #3
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: Hi everyone

Quote:
Originally Posted by Zlmd2017 View Post
Hi everyone I've been a member since last year wrote lots of messages etc then deleted them lol. I tested positive for carrying the hd gene in November 2017. As you all know it was the worst possible news as I have 3 great kids and grand kids my count is 39 so I may or may not get symptoms but that dosent matter to me as I'm aware my babies can get higher. Those loads more I want too say and I will but i need to be approved love and blessingsxxx
Hi Zlmd2017 sorry about you positive status and understand your worry for you children and grandchildren . the message board is a good place to say what you want to say and your posts may help others, there are lots of understanding people here to give advice to you too .

take care
Gabby
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Old 31-05-18, 06:51 PM   #4
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: Hi everyone

Quote:
Originally Posted by Gabby View Post
Hi Zlmd2017 sorry about you positive status and understand your worry for you children and grandchildren . the message board is a good place to say what you want to say and your posts may help others, there are lots of understanding people here to give advice to you too .

take care
Gabby
Thank you so much gabby for your reply I understand from your posts your husband has hd. I never knew anything about this disease until last year it hit me like a steam train as I adore my kids and grandchild and I found the nightmares so hard to switch off but now moving forward im so positive and so determined to live every day I treasure so many things I never saw before so for me now my hd gene I dont entertain with my thoughts as this present time everything is good anyway speak to u soon gabbyxxx
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Old 19-08-18, 06:33 PM   #5
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: Hi everyone

I know I've most probably put a message up that no one will read as I still haven't found out how too just post how I feel on my page. Ahh I'm really struggerling atm I think I've been in denial for a long time now I've stopped the anti depressants that I took to help me go through test process I suddenly feel really raw about everything I love my family so much too think I could of passed on a gene like this is soul destroying but I'm still hanging on in there I thought I would get some support from this sight but I don't feel I have it all seems so negative and more for the partners of hd people like myself anyway I send my love too u allxxx
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Old 19-08-18, 11:12 PM   #6
Crystal
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Join Date: Sep 2015
Posts: 237
Default Re: Hi everyone

Quote:
Originally Posted by Zlmd2017 View Post
I know I've most probably put a message up that no one will read as I still haven't found out how too just post how I feel on my page. Ahh I'm really struggerling atm I think I've been in denial for a long time now I've stopped the anti depressants that I took to help me go through test process I suddenly feel really raw about everything I love my family so much too think I could of passed on a gene like this is soul destroying but I'm still hanging on in there I thought I would get some support from this sight but I don't feel I have it all seems so negative and more for the partners of hd people like myself anyway I send my love too u allxxx
Hi Zlm
Sorry to hear how difficult everything is for you at the moment and the struggles you are having. Just to reassure you that your messages are read.... your thoughts acknowledged and we all do understand how difficult it must be for you and the heartbreak that families go through when HD enters our lives. Please don't think that this message board is just for those of us supporting and caring for someone with HD....it is for everyone who is facing a difficult, challenging and changing times within their families... in whatever way HD is affecting individuals.... for you to send your love to us all means a great deal and says so very much about you, that you can still think of others, whilst still trying to come to terms with your own feelings...which will be 'swaying' all over the place at any given time!
You mention that you're no longer taking antidepressants? Was this the advice of your GP? Maybe worth having another chat with them to see if all is well with regards to this?
Please don't feel this site is negative... there's a lot of positive help and advice and support that many of us have been so grateful for over the years. Do still 'hang on in there'!
Sending our love back to you!
Best wishes
Crystal
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Old 20-08-18, 10:09 AM   #7
Trish
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Join Date: May 2010
Location: England
Posts: 2,391
Default Re: Hi everyone

Quote:
Originally Posted by Zlmd2017 View Post
I know I've most probably put a message up that no one will read as I still haven't found out how too just post how I feel on my page. Ahh I'm really struggerling atm I think I've been in denial for a long time now I've stopped the anti depressants that I took to help me go through test process I suddenly feel really raw about everything I love my family so much too think I could of passed on a gene like this is soul destroying but I'm still hanging on in there I thought I would get some support from this sight but I don't feel I have it all seems so negative and more for the partners of hd people like myself anyway I send my love too u allxxx
Can I echo what Crystal said.

I also wanted to add a thought that maybe the way forward, apart from speaking to your GP and HD Specialists about how you feel, might be to see if you are a candidate for the various research projects going on now?

Maybe having a cause to focus on will help? That rawness being channelled into something.

Turning your HD status into a force for hope for those in the future generations may be a positive force of purpose that helps you come to terms possibly? Even if you cannot get on the research platforms is there something else such as taking up marathons; doing a sponsored event etc etc.

As a carer I found writing a blog helped; I then did a poetry project; I have done a trek around all the London Underground Stations plus a few other things to help not just with HD awareness but to offload my own sense of feeling useless at times. It's got me through a lot of cr#p times both before and after hub's passing.
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I tried.
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Old 20-08-18, 04:01 PM   #8
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: Hi everyone

Thank you both so much for your replies too me they ment alot it's a massive journey for all of us atm I had always been so proud of my llittle family just become a nanny when this evil came into our lives i found it still find it difficult to accept and lately I've felt so angry and also so helpless and lonley. I'm under Roger barker at addingbrooks who's brilliant he is one of the top specialists in the country I am speaking at a conference in November about living with hd and have done several fundraising events to raise money and awareness of living with hd so I am trying on just having a battle atm maybe your right I should go and c my gp thank you again I've tried and crystalxxx
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