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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 06-09-08, 02:44 PM   #1
daydreamin
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Default just wondering

hi
there is no care residental or respite or day care in york for people with hd and there familys
peoplle go to leeds or res/nursing homes that have no experiace in hd not everyone can travel or want there loved ones in old peoples homes that have no experiece , expecianly when ther luyved one is not old .
what can we do about this , i have worked as a carer all my working life and would just dreeam of having a place cumfee friendly with trained staff in york for people and relotives of hd how can we get there ,
there is an big old house in fulford been for sale for ever every time i drive passed i can see it as a plkace of comfort for people conected to hd if i won the lottery thats what i do with the money and train staff in care of hd people
anyone have any idea how my dream can come true i need help x x x x
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Old 06-09-08, 09:43 PM   #2
DH
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Default Re: just wondering

Quote:
Originally Posted by jacqueline View Post
Are there any places especialy for HD patients?
Three that I know of:

http://www.bupacarehomes.co.uk/careh...andNursingHome

http://www.bupacarehomes.co.uk/careh...illNursingHome

http://www.stah.org/en/1/srvdivtow.html
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Old 07-09-08, 09:19 AM   #3
poppysox
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Default Re: just wondering

Hi Daydreamin

Thats a lovely post and like Ashlee I wish i could make it come true for you too. I will have to win the lottery too unfortunately.
take care
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Old 07-09-08, 01:28 PM   #4
arsenal61
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Default Re: just wondering

hi jac, not sure about other parts of the country, but my mom in law went to a sue ryder home in hitchen, for a break, and im sure that i have heard of other sue ryder homes too, im sure if you looked on the net you could find them, as for winning the lottery and opening a home that is a wonderful idea, if only dreams came true!
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Old 07-09-08, 01:29 PM   #5
arsenal61
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Default Re: just wondering

sorry that was meant to say hitchin! der
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Old 07-09-08, 02:44 PM   #6
just1moreperson
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Default Re: just wondering

I was going to say...maybe all together we could make something happen. But then I realised that would mean one care home and where would you plonk it on the map
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Old 07-09-08, 08:58 PM   #7
Sarcasper
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Default Re: just wondering

As well as having a step bro with HD, I am also very fortunate to work for a res home specific to HD only, down here in Kent. :-)
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Old 07-09-08, 10:35 PM   #8
just1moreperson
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How is it Sar???
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Old 08-09-08, 04:25 PM   #9
Claire03
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Default Re: just wondering

Hiya,
just read you post and i am in a very similar situation to urself! I have just left uni at st john's in York, and forthe last 8 years or so i have been travelling to london to see my dad who is a resident in the british home n hosp for inc, would love it if there was somewhere closer, as i could spend quality time with him rather than an hour every few months, for him tho i feel he is better off where he is as he is settled and he has family in london. If you could ever set something up like that it would be amazing! n maybe i'd come work for you! i have no idea what path to take yet! sorry i cant help you!! all the best
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Old 08-09-08, 04:49 PM   #10
angelad
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Default Re: just wondering

Hi
There is a care home in leeds for people with HD
Its a great 10 bed unit,but unfort the staff just pick hd up as they go along
no long term training which i feel is quite sad but funds dont allow training
how sad
Angela
xxxx
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