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Younger person with Alzheimers

Eileen

Registered User
Jan 12, 2005
4
I am a younger person with Alzheimers and am just learning how to access the web site and this talking point page. I am interested in getting in touch with people in a similar position to myself. I would be interested in hearing from any women aged under 65 who have been diagnoised with Alzheimer's. I would like to know how you felt about the diagnosis and how your family and friends coped. I am no longer able to work and get quite bored at home - do you have any ideas on things I can do to keep myself active and busy.
 

Colin Cosgrove

Registered User
Mar 10, 2004
18
www.alzheimers.org.uk
Hello Eileen

Welcome to Talking Point. I hope that you will be able to make contact with others like you.

There is also a website called the Alzheimer's Forum that was set up by people with dementia to make contact with others. You can visit it at www.alzheimersforum.org

The Alzheimer's Society has a number of branches around the country. Have you been in touch with your local branch? They may be able to put you in touch with other people, or there may even be groups for younger people that you can join.

If you would like me to find out your local branch, please let me know. You can also email me at ypwd@alzheimers.org.uk

I hope that helps.

All the best,
Colin.
 

carolinew

Registered User
Jan 14, 2005
1
Buckinghamshire
Another young person

Hello there,
I am a best friend of a 39 year old lady with Altzheimers. My friend is deteriorating quite fast, and has the genetic version of the disease. We are interested in hearing from anyone else, although my friend does not have internet access, so we sit together to do research. She is a single mum, and lost her father aged 36, and uncle, and grandmother to the illness before her.
I am online most days through work, and would love to hear from you.
 

HeatherR

Registered User
May 19, 2004
6
Derby
Hello Eileen,
It is wonderful to make contact with someone who may be facing the same problems that you are. I am 50 and at the moment have a diagnosis of Mild Cognitive Impairment/mild dementia and I am being ping-ponged about between specialists while they watch me and my score deteriorate. I have been told “I am too young and just too bright” to have a full diagnosis or treatment yet I too have had to give up my job (IT consultant and lecturer). The pathway to a diagnosis is very hard and long as no one seems to know what to say or do to younger people struck by this disease.

My family have reacted in a very different way to my current diagnosis; my husband is still playing head-in-the-sand although he is slowly beginning to face facts. My son (21) and daughter (19) are very supportive and a couple of close friends have helped me along the way. I think that it took nearly six months for me to come to terms with what is happening to my brain and to accept that I would never work again.

Have you contacted your local Alzheimer’s branch? I could not have got through the last 12 months without the support of my local branch. They have always been there for me to talk, offer advice, information and support you in any way they can. Ask them how to claim your council tax discount for people with dementia.

I try to keep busy and keep my brain as stimulated as possible at home. I am a foster mum for a local animal rescue unit and look after mums and kittens for them when I can. I think that you can do up to 8 hours of voluntary work a week without affecting your benefit. You might like to think about trying your local college to see if you are interested in any of the courses that they are offering.
Keep up the stimulation!

HeatherR
 

briancash

Registered User
Feb 9, 2005
1
Bury St Edmunds, Suffolk
I am a man

Hi Eileen,

I am a man who is 58 years old and has just retired on the medival grounds from being a primary headteacher. I have Frontal Temporal Dimentia/Pick's Disease. Is this what you have got?

Can we have a chat?
 

Eileen

Registered User
Jan 12, 2005
4
carolinew said:
Hello there,
I am a best friend of a 39 year old lady with Altzheimers. My friend is deteriorating quite fast, and has the genetic version of the disease. We are interested in hearing from anyone else, although my friend does not have internet access, so we sit together to do research. She is a single mum, and lost her father aged 36, and uncle, and grandmother to the illness before her.
I am online most days through work, and would love to hear from you.
I am sorry to hear about your friend and am glad she has a supportive friend in you. I shall be thinking of her every day and would like to communicate again with her if possible. You or your friend could make contact with me via my support officer at the Leicestershire Branch of the Alzheimer's Society. Her name is Amanda Bee.
 

Eileen

Registered User
Jan 12, 2005
4
HeatherR said:
Hello Eileen,
It is wonderful to make contact with someone who may be facing the same problems that you are. I am 50 and at the moment have a diagnosis of Mild Cognitive Impairment/mild dementia and I am being ping-ponged about between specialists while they watch me and my score deteriorate. I have been told “I am too young and just too bright” to have a full diagnosis or treatment yet I too have had to give up my job (IT consultant and lecturer). The pathway to a diagnosis is very hard and long as no one seems to know what to say or do to younger people struck by this disease.

My family have reacted in a very different way to my current diagnosis; my husband is still playing head-in-the-sand although he is slowly beginning to face facts. My son (21) and daughter (19) are very supportive and a couple of close friends have helped me along the way. I think that it took nearly six months for me to come to terms with what is happening to my brain and to accept that I would never work again.

Have you contacted your local Alzheimer’s branch? I could not have got through the last 12 months without the support of my local branch. They have always been there for me to talk, offer advice, information and support you in any way they can. Ask them how to claim your council tax discount for people with dementia.

I try to keep busy and keep my brain as stimulated as possible at home. I am a foster mum for a local animal rescue unit and look after mums and kittens for them when I can. I think that you can do up to 8 hours of voluntary work a week without affecting your benefit. You might like to think about trying your local college to see if you are interested in any of the courses that they are offering.
Keep up the stimulation!

HeatherR
Heather I am sorry to hear that you are finding it difficult to get a full diagnosis - does this mean that you cannot take any of the dementia drugs that are available. My support worker suggests that you BULLY and keep asking for a diagnosis. You need to know what you are suffering from to be able to come to terms with it. I to have a daughter who has accepted my diagnosis but unfortunatley lives the other end of the country. I to had to finish working and found that very hard to deal with. Suddenly I had lost some of my independence and belonged to a different group - not the 'working group' but I lost my sense of identity. I do hope that you get your diagnosis. Please keep in touch. Eileen
 

Eileen

Registered User
Jan 12, 2005
4
briancash said:
Hi Eileen,

I am a man who is 58 years old and has just retired on the medival grounds from being a primary headteacher. I have Frontal Temporal Dimentia/Pick's Disease. Is this what you have got?

Can we have a chat?
Hello Brian, I do not have Pick's disease but have been diagnosed with Alzheimer's Dementia. My support worker suggests you look at the following web-site for more information about picks. www.pdsg.org.uk I hope they can help you. Regards Eileen.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Hi jainischalverma

While many of us might hesitate to call 60 "old", :D you are very welcome here if you are dealing with a relative with dementia.

You might want to check out the factsheets at the top of this page (top left i Factsheets )which provide a reliable source of information about Alzheimer's Disease and various other dementias.