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44 yrs old - early onset

linda1scot

Registered User
Aug 2, 2011
416
0
54
north lanarkshire
Hi

As some of you may know I was away seeing the psychologist this morning after trying to get someone to listen to me for 3 years!

Well, to cut a long story short, she has told me she is pretty sure I have early onset dementia and has given me another appt to see another psychologist/neurologist 22nd sept. Seemingly the appt will last 3/4 hours.

Its weird but as well as being upset (although in my heart i knew) and the length of time it has taken to get a diagnosis, i am also relieved to be told the diagnosis. I can now get on with the rest of my life and try to live every day to the fullest.

anyway, im sure someone will be able to advise me what to expect or what i should be doing now as my head is a bit scrambled at the moment (to be expected i guess).

Linda x
 

Amy

Registered User
Jan 4, 2006
3,454
0
Hiya Linda,

Sorry that you have received this news today...I cannot begin to imagine the range of emotions that you are experiencing. You are right though in what you say...we should all 'live every day to the fullest'...for none of us knows what tomorrow may hold.

I know that there are others posting on here who have early onset and I am sure that they will be able to offer you support.

Love Helen
 

danny

Registered User
Sep 9, 2009
3,342
0
cornwall/real name is Angela
Hi Linda, sorry about your news. You must be experiencing so many different emotions right now.

The main thing is that now you have a diagnosis you can start planning ahead.

I don`t know if you have heard of the following organisation. I know they are based in Oxdordshire but they will have a wealth of practical information if you contact them.




http://www.youngdementiauk.org/index.htm


We are all here for you . Take care,best wishes, Angela.
 

Izzy

Volunteer Moderator
Aug 31, 2003
63,517
0
69
Dundee
Linda I'm sorry you've had the diagnosis. Just to encourage you thought - my husband's diagnosis was 10 years ago and although things are not the same he still enjoys a good life. x
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi Linda

I can understand that your head is a whirl at the moment. The diagnosis must be the confirmation of your worst fears, but it must also be a relief that at last someone has taken your fears seriously.

I'd suggest that the best thing for you at the moment is to try to relax and let your thoughts settle. Don't worry too much about what's ahead, as you can tell from the forum, all cases are different, and there's no knowing how your disease will develop.

Stay with us, you;ll get lots of support here, and advice when you need it.

Take care,
 

Grannie G

Volunteer Moderator
Apr 3, 2006
72,400
0
Kent
I'm really sorry Linda. The diagnosis is bad enough in itself but in someone so young it's the worst nightmare.

I do hope you are a suitable candidate for the medication.
 

linda1scot

Registered User
Aug 2, 2011
416
0
54
north lanarkshire
Hi all

Thanks for your replies and support. All are very very much appreciated.

I have spent most of this afternoon and this evening phoning relatives etc to let them know of my diagnosis. Most were supportive although i was quite surprised at others!

Theres nowt as queer as folk!!

Thanks again

Linda x
 

sanford99

Account Closed
Aug 2, 2011
217
0
Talk about being slapped in the face with a wet kipper.......! Oh, Lin, I am so sorry - you must be reeling, and yet, also, as you say, relieved at last that you are getting somewhere and there is recognition that there is something medically to deal with. I am sure getting fobbed off over the years was a real strain when you knew something wasn't right. ( been there, done that, not only got the t-shirt but the badge and hat as well...Grrr)....

At least you now not fighing a battle for recognition and that is a big plus. It goes without saying that my thoughts will be with you throughout and I hope you will continue to share.......

When you ready, I would love you to explain how some relatives did react!! The mind is boggling that there could be anything less that 100% support........but, sheesh, families.........I should know better.....:rolleyes:

Big hugs.......xxxxxxx
 

linda1scot

Registered User
Aug 2, 2011
416
0
54
north lanarkshire
Hi Sanford

Yet again you have lifted my spirits.

Yesterday as i said, i felt relieved after 3 years to be given an answer but today i just want to go to the top of a mountain and scream and shout its not fair!! I have a husband who underwent a triple heart bypass in May (he is only 41) and that was bad enough. I also have 2 daughters - the youngest is only 2 and a half - what am i supposed to tell her in a few years? I am just (better watch my language) peed off. Very unsure of my feelings today and dont like it very much.

So please do tell me about the reactions from relatives - i need a laugh!!

Linda xx
 

grove

Registered User
Aug 24, 2010
7,714
0
North Yorkshire
Hello Linda 1 Scot , Just wanted to send you much Love , Support & Prayer's for to- day & the Day's & Weeks to come . Am very sorry to read of your early onset Dementia as you said in your last Post its very unfair

Am trying to think of a Joke to make you laugh but my jokes are not very good ! ! ! ( will have too look in the Christmas Cracker's this Year :D )


Take Care & Welcome to T P you will have lots of good Support on T P


Love Grove x x
 

sanford99

Account Closed
Aug 2, 2011
217
0
Hey Lin...well, hate to break the news to you, but the reason you are feeling that is so bloody unfair is because it darn well is!! And a good climb to a mountain summit, a piercing scream and a ripping blue streak to make a navvy blush, would do you the world of good.........:D Am just sorry we cannot helicopter you there for half an hour and let you get on with it.....:(

Nah, I meant YOUR relatives reactions, though we could do a virtual 'round the camp fire' telling bad family stories instead of ghost stories one night.....I will be one supping from the hip flask :rolleyes:

You are bound to go through a whole range of emotions - day to day, hour to hour, even minute to minute ( oh wait! Is that just me?????:confused:), but things will settle, I am sure.

Whenever I have felt daunted ( and there have plenty of times!!) I have taken a big sigh, and thought, just one step at a time.......cannot do anymore than that...and sometimes just focusing on that' one step' has got me through times when I really did think that I was too overwhelmed to do anything.........bit of a cliche, maybe, but it has worked for me......

Just know that we are here and we are all here for various reasons, obviously......but help and support has got to be top of the list....;)

So, big breath and remember who your friends are ( and ahem, as you will find, some of them won't be family members!!!:mad:)
 

murray548

Registered User
Mar 21, 2011
9
0
Dundee
Hi Linda
My wife was diagnosed in June 2009 at the age of 51 after being passed from pillar to post for almost 18 months. We have 2 wonderful daughters and a new grand daughter.
Until recently my wife was holding down 2 jobs although she has given 1 up now. She does a lot of charity work and will shortly be starting voluntary work at the local AS Centre. I'd love to hear more from you and am always availble if you need an ear to bend !! Good Luck x


Hi

As some of you may know I was away seeing the psychologist this morning after trying to get someone to listen to me for 3 years!

Well, to cut a long story short, she has told me she is pretty sure I have early onset dementia and has given me another appt to see another psychologist/neurologist 22nd sept. Seemingly the appt will last 3/4 hours.

Its weird but as well as being upset (although in my heart i knew) and the length of time it has taken to get a diagnosis, i am also relieved to be told the diagnosis. I can now get on with the rest of my life and try to live every day to the fullest.

anyway, im sure someone will be able to advise me what to expect or what i should be doing now as my head is a bit scrambled at the moment (to be expected i guess).

Linda x
 

linda1scot

Registered User
Aug 2, 2011
416
0
54
north lanarkshire
Thanks so much for your post. it means an awful lot when i am sitting here wondering whats going to happen to me and how quickly it will develop. I have just phoned my lawyer whom i have known for 20 years so he was pretty shocked to hear the news. Just didnt realise power of attourney or whatever its called costs so much to register etc !!

Am also going to see my MSP again on friday to let him know whats happening. i mentioned before how it was down to him that i finally got someone to listen to me and wasnt all in my head! He actually emailed me at 3pm on sat afternoon to ask how i had got on at my appointment last week (which i thought was amazingly thoughtful of him!) i guess not all MPs are the same!

My battle with the authorities is far from over tho as i have a list of about 10 things that i have to bring up with him regarding my lack of treatment so far and this includes comments regarding the lack of treatment/diagnosis/support from the psychologist who admitted quite adamantly that there was nothing to help people of my age and how she was so shocked at it taking 3 years for a diagnosis as such. This is after receiving a copy of a letter sent to my MP
from lanarkshire health board to say how they had/have done everything in their power to help - YEA RIGHT !! They also mentioned if we would like a meeting re the above they would be happy to see us - they dont know what they are in for !!

Anyway, sorry about the ramble and thanks again for your concern. I do hope your wife is well - she certainly seems to be coping!

Linda xx
 

TinaT

Registered User
Sep 27, 2006
7,095
0
Bolton
Dear Linda,

I'm so very sorry that you have finally been given the diagnosis. I hope with all my heart that a cure is not too far away. Pin your thoughts on that my love, modern medicine is striding along and we all have every hope that what with the 'stem cell' research and other marvelous ways forward, there will be a light at the end of the tunnel, both for you and for others.

I know what a campaigner you are and as others have said to me on my quests in that direction , have a break, give yourself some TLC (wish I was near enough to put my arms around you) and pamper yourself in whatever way you like.

We are all here, right with you on this journey. Take good care of yourself.

xxTinaT
 

Reds

Registered User
Sep 5, 2011
567
0
Hertfordshire
Thanks so much for your post. it means an awful lot when i am sitting here wondering whats going to happen to me and how quickly it will develop. I have just phoned my lawyer whom i have known for 20 years so he was pretty shocked to hear the news. Just didnt realise power of attourney or whatever its called costs so much to register etc !!

Am also going to see my MSP again on friday to let him know whats happening. i mentioned before how it was down to him that i finally got someone to listen to me and wasnt all in my head! He actually emailed me at 3pm on sat afternoon to ask how i had got on at my appointment last week (which i thought was amazingly thoughtful of him!) i guess not all MPs are the same!

My battle with the authorities is far from over tho as i have a list of about 10 things that i have to bring up with him regarding my lack of treatment so far and this includes comments regarding the lack of treatment/diagnosis/support from the psychologist who admitted quite adamantly that there was nothing to help people of my age and how she was so shocked at it taking 3 years for a diagnosis as such. This is after receiving a copy of a letter sent to my MP
from lanarkshire health board to say how they had/have done everything in their power to help - YEA RIGHT !! They also mentioned if we would like a meeting re the above they would be happy to see us - they dont know what they are in for !!

Anyway, sorry about the ramble and thanks again for your concern. I do hope your wife is well - she certainly seems to be coping!

Linda xx

Sorry to hear your news. Its easy to say but live life to the full. Make the most of every single moment and sometimes take a mental holiday. You may find you enjoy yourself more now you know, none of us knows whats round the corner so although you have now been labelled your chances may not be any worse than any others. Hope this comes across the right way, all the very best!
 

grove

Registered User
Aug 24, 2010
7,714
0
North Yorkshire
Hello Linda , Thinking of you & hope the next Appts go well for you & you seem to have a very nice :) MSP in contacting you on Saturday

Take Care & as Tina said give your self some T L C :)


Love & BIG HUGS Love Grove x x x x
 

ginger40

Registered User
Sep 6, 2011
2
0
hello

Hi linda,
I have just read a really good book, called 'Losing Clive to Early Onset Dementia'.
My mum managed to get a copy from her local Alzeimhers society, who you should get in touch with. You should have a local branch. The Leicestershire branch has regular meetings for those with early onset. Lets hope your does too.
It is written by Helen, Clives wife. And its good.
I came on here tonight to tell people about it. It certainly touched a cord with me.
Google the clive project and you will be able to see what its all about.
These talking forums are a god send. Keep us informed of our progress.