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Carers, things that have helped Share your experiences of caring, and pass on practical advice and helpful tips

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Old 19-07-18, 08:23 PM   #1
PB
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Join Date: Dec 2017
Posts: 3
Default Finding someone to talk to

Hi can anyone suggest ways that I can connect with someone in a similar situation to myself.
I am 47 and my Husband was diagnosed with HD a year ago I have 2 teenage daughters.
I have asked my HDA advisor and she doesnt know anyone in my situation. I live in Cumbria but happy to chat via text, messanger. I feel it would really help as friends dont really seem to get what this is like xxx
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Old 22-07-18, 03:04 PM   #2
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: Finding someone to talk to

Hi I'm 46 and I'm a mum and a nan but I'm the other side I have been diagnosed of carrying the hd gene last year. I understand your isolation on this and how other people react and I'm sorry to hear about your husband and I completely understand the worry about your daughter's do they know?? I hid the news from my kids until id gone through the test process telling my diagnosis was soul destroying for a mum I felt and still do feel so guilty but my kids were great they have been amazing I'm so proud of them anyway I'm here if you ever need a chat and make sure you have plenty of support for yourself you need too be strong I wish you and your family all the bestxx
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Old 29-07-18, 07:26 PM   #3
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: Finding someone to talk to

Quote:
Originally Posted by PB View Post
Hi can anyone suggest ways that I can connect with someone in a similar situation to myself.
I am 47 and my Husband was diagnosed with HD a year ago I have 2 teenage daughters.
I have asked my HDA advisor and she doesnt know anyone in my situation. I live in Cumbria but happy to chat via text, messanger. I feel it would really help as friends dont really seem to get what this is like xxx
Hi Please ring 0151 331 5444 there is a support group in cumbria

Gabby
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Old 06-08-18, 03:28 PM   #4
PB
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Join Date: Dec 2017
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Default Re: Finding someone to talk to

Quote:
Originally Posted by Gabby View Post
Hi Please ring 0151 331 5444 there is a support group in cumbria

Gabby
Hi Gabby, I have been to a few of the meeting. Asked them if there was anyone in my situation to talk to, unable to help x
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Old 08-08-18, 06:02 PM   #5
Gabby
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: Finding someone to talk to

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Originally Posted by PB View Post
Hi Gabby, I have been to a few of the meeting. Asked them if there was anyone in my situation to talk to, unable to help x
Oh ok so who do they support ? sorry confused ?


Gabby
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Old 08-08-18, 11:17 PM   #6
Crystal
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Join Date: Sep 2015
Posts: 237
Default Re: Finding someone to talk to

Quote:
Originally Posted by PB View Post
Hi can anyone suggest ways that I can connect with someone in a similar situation to myself.
I am 47 and my Husband was diagnosed with HD a year ago I have 2 teenage daughters.
I have asked my HDA advisor and she doesnt know anyone in my situation. I live in Cumbria but happy to chat via text, messanger. I feel it would really help as friends dont really seem to get what this is like xxx
Hi Pb.....looking back at your situation... quite a while ago now...I suggested that meeting someone in the same situation as yourself, on a one to one basis might help you... as like most of us... if not all..you were finding it difficult to cope with the responsibility of caring. It would seem that you have tried to do that, by getting in touch with your Specialist HD Advisor as was suggested (to 'connect') you with someone and since then you have also been to some of the support group meetings. SO!!... like Gabby I am a little confused as to why your SHDA said didnít know anyone in your situation.... and also what happened when you went to the support group!!? Would you perhaps be able to tell us a bit more, so we may be able to try and help, as we may be misunderstanding something here along the way!!

Best wishes
Crystal
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