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Very Early age dementia in Down's syndrome.

jilljay

Registered User
May 22, 2005
74
Birmingham
Thanks Grannie G .I do appreciate it.Am at long last suddenly hearing something that might help us.but am so shocked that I had to go to so much trouble to find it. The previous lady (Rowengarth) gave me some very useful information,which I have acted on .Will let everyone know the out come. Am so glad I did the awareness/petition but if I hadnt ..wouldnt have heard anything!!!How would anyone know there was a serious situation out there? No Carer should have to go to extremes to get help/information.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,504
Kent
Dear jillyjay

I still haven`t had an email for verification. I don`t know what I`m doing wrong as I`ve had no problem before , signing petitions.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
hi Sylvia,someone else told me that too.they where using a works computer but their own email addy. When they used their own PC had no probs!
Here it is again ..If you dont mind trying a third time!!!!
I wish I knew the answer, but am amazed have managed this so far!!! Am just 'old'and not PC orientated ,but love it all the same!! I really dont want to be a nuisance to anyone except those who are ignoring our need!!
Thanks once again!!

http://petitions.number10.gov.uk/uk-ead-ld/


 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,504
Kent
I`ve done it again so will see. This is my own personal PC and no-one else uses it so it can`t be that.
You will see my name if it works. :confused:
 

jenniferpa

Registered User
Jun 27, 2006
39,448
I've just signed and I got the email immediately.

When you enter your email address it autofills it, but if it was put in wrong the first time it will be wrong subsequently so you might try that.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you for that Jennifer,and am so glad Sylvia is there!!! I know I keep repeating myself,but everyone on here really should have a pat on the back and a big thank you from me. Hope I am able to help you all too in some way. I have learnt a lot since starting this thread.
One of the big things I have learnt is ..you are NEVER alone, and someone out there has info/help for you!!
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,504
Kent
Thank you Jennifer

I did look but not so far down, I must have done it properly the first time around.
A senior moment? :eek:
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thought you might like an update.
As you know I have sufficient signatures for my petition but would like masses more of course , and the awareness part of my campaign has had approx 3000 views across a few Carer sites.,bet most of those where ME lolol.
WE where asked to attend a committee meeting at our council house to tell the councillors of our experience of Dementia. All of you who have been interested in reading my comments on here will know what I said. They appeared very shocked.Two people from a dementia service gave a very knowledgable presentation which I thought was really good but of course didnt include learning disabilities,and didnt cover my side of the city anyway!So now must wait to see if anything happens!! Here is my petition site again!!
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http://petitions.number10.gov.uk/uk-ead-ld/

Thanks for your concerns and attention. I fully realise just how difficult your lives must be too.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you Alfjess ,I do appreciate it. I am now wondering if the £150 million the gov says it is giving in the dementia strategy, will cover my concerns about testing for early age dementia in people with learning disabilities and also fund any follow up need? I wish someone would say where this money is going ,how it will be used, and how much each area will get!! Bet the info is out there somewhere!! It sounds a lot, but when it comes to the numbers of people out there,known and UNKNOWN ,it isnt enough!
 

jenny48

Registered User
Sep 19, 2008
121
Hello

Sorry I have only caught up with your thread but my name is on the petition now.

Good Luck

Jenny:)
 

Amber 5

Registered User
Jan 20, 2009
890
60
Berkshire
Hi Jill,
Have signed your petition and good luck with that.
What about contacting Fern and Philip on 'This Morning' - might just get some focus that could help.
Best Wishes,
Gill x
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Thank you Jenny and Amber. I now have 261 and hope to get more .
Another update for you all. Had a visit today from our new social worker. (Met him once before) He said that it had been agreed our daughter could receive a 1 to 1 care worker and offered a place back at her old day centre. It isnt our first choice of a base so am hoping more thought will be given to that. There are masses of ifs and buts, but we are at least on the road to getting a service suitable to her needs. I am sure all this has come about because of the petition,and awareness campaign that you have all supported so extremely well. We shouldnt have to go to these extremes to get what is needed for the people we care for.!!
will give you updates when things (hopefully) happen.
 

minky

Registered User
Feb 19, 2009
4
herefordshire
minky

hello jilljay i have just joined and i feel in a turmoil i dont know where to go or who to talk to if i meet anyone now who is a carer with e.g, learning difficulties etc i just seem to zoom in on them hoping that they can reassure me i did yesterday in town while we were shopping. my husband who works away all week seems to bear the brunt of my awfull nightmare of a week. its awfull and i feel so guilty as this seems to have taken over our lives over the past few months i dont even know when it started as sandra has always been moody and sometimes very difficult. i have emailed the alz society and hope they get back to me. i feel as though im possessed and shall go mad if i dont get help. dont know how to cope with this.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
71,504
Kent
Hello Minky

Does your sister have day care?

I believe early onset dementia is quite common with sufferers of Downs Syndrome and was wondering if anyone at her care centre can help you.

It might be better phoning the AS Helpline instead of emailing them so you can speak to someone.
Another possibility is to phone the Admiral Nurse Helpline.

Admiral Nursing Direct 0845 257 9406
Tuesday 10-4 6-9
Thursday 6-9
Email fordementia.org.uk

Even if you don`t have access to an Admiral Nurse in your area you can be given valuable advice over the phone. And Admiral Nurses are there to help carers.
 

jilljay

Registered User
May 22, 2005
74
Birmingham
Hi minky

Hi Minky have just read your message . Has your daughter down's syndrome,or has she a different type of learning disability? Could you tell me how old she is and why you are obviously distressed with her? Like.. why you think she may have a form of dementia? The Alz society have an information 'page' about L/D and dementia
but it referes you to the Down's association.(obviously just for people with down's syndrome) I think it is very important that different charities work together,as there are many people with other disabilities who also have a form of dementia. There are many questions I could ask,but the first would be ..have you talked to your doctor about Sandra and your concerns. Right at the beginning when I knew something was terribly wrong I was told there are four or five other avenues need exploring before dementia can be concidered. Please reply as I know I needed someone to talk to particularly at the beginning. The Alzheimers society members (on here) have been a wonderful support in signing my petition and giving me a lot of moral support.I also use Carers UK.and Princess Royal Trust for Carers (all types) They have a chat room so can 'talk to them which is really good.Why dont you pop in one night? Tell me the time and I will try to be there. Most go in after 9.30pm, but if that time doesnt suit ..give me a time and will let you know if I can manage that time. Dont worry if you do not like that idea . some it suits others it doesnt. Hope to hear from you again!!



Jill
 

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